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    You are here : Home » Get Involved » MSRC Interactive » Haematopoietic Stem Cell Transplantation (HSCT) Bl

    Stella's Haematopoietic Stem Cell Transplantation (HSCT) Blog

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    Stella

    Hi,

    My name is Stella, I am aged 36 and I work for the NHS as an Ophthalmic Photographer. I'm happily married and live in Derby, England with my husband Marc (who is my everything and my soul mate too) and our 2 cats, Lily and Sookie.

    I think the best way for me to do a biography introduction is to kind of do a bit of a "jackanory"! So here it is......

    My Story!

    I was diagnosed with RRMS in March 2007 but my first symptoms were definitely around in approx. 2001 which were Uthoff's symptom (misty vision due to a rise in body temperature), another relapse later in 2004, which was diagnosed by GP as sciatica. Another relapse in Nov 2006 of optic neuritis which I then had evoked potentials, followed by an MRI and then the ultimate bummer of an MS diagnosis.

    Treatment to start off with was giving myself Avonex injections (not bad for a needle phobic) once a week for about 18 months, it didn't do a lot to prevent relapses for me. Followed by a drug trial with a drug only known to me as CDP323, which I responded v well with but all drug trials come to an end and prob a good job it did because my liver blood results went crazy high after I had taken the drug that morning for the last time! As part of the trial, I was then supposed to be drug free for treatment of my MS for 12 months after but as I was relapsing at a rate of 1 per month, it was decided that I should have Tysabri to treat my MS. I started the Tysabri infusions in Dec 2009 with no bad reactions which was good and everyone that I met at the IV infusions every 4 weeks, said things like "I've been on it 4 yrs and no relapses" & "not a relapse for years, feel better than ever" or "it's the best drug there is at the moment it even helps with the fatigue"! But alas, not for me because whilst I should be same as everyone else, I have had 5 relapses in the 18mths I have been having it.

    So, now we're heading towards the good and slightly more interesting bit! I saw my consultant, Prof. Cris Constantinescu at Queens Medical Centre, Nottingham, in Nov 2010 (after another relapse) and he discussed the status of my MS which he said i am definitely "highly active, rapidly evolving" MS and also the possibility of my also being Secondary progressive stage of my MS. He also discussed new treatments with me. He spoke of Campath (Alemtuzumab) or maybe Haematopoietic Stem Cell Transplantation (HSCT). It was discussed that if I was interested in having HSCT then he would set up a meeting with the UK's leading expert and friend/colleague Dr Paolo Muraro at Charing Cross, London, I said that I was indeed interested and I'd be happy to see Dr Muraro. So, he said he'd set it up.

    About 2 or 3 weeks later I received an appointment to go and see Dr Muraro. So, in Jan 2011 me and Marc went to see Dr Muraro, who was such a nice man. He asked me questions about my MS and examined me physically and then we discussed potential therapies. He said that had I have had the Campath back in 2004 then it would have been effective then, but as I wasn't diagnosed back then and it not being a treatment at that time either, it wasn't really an effective option now and the only avenue left would be to have the HSCT. He said he would write a letter to my neuro saying all of this and supporting my having this treatment.

    On our return about a month later I was sent an appt. to see Prof Russell (the haematologist who will be doing the HSCT) and I saw him in Feb 2011 we discussed the process roughly and he told me that he would send off an application to Derby PCT for an "individual funding request" for exceptional cases. We heard back from Derby PCT at the end of April '11, rejection, access denied, case not exceptional enough! So my consultants decided that they would appeal the decision on my behalf and I saw my  neuro at the hospital (as I was working near to his office that day) who said that Derby PCT commissioning team had called him and he'd answered several of their questions and showed them evidence and sure enough on Tues 7th June we received a letter saying that the treatment is approved and is to be funded by Derby PCT.

    I called Prof. Russell's secretary later that day and she said that he wanted to see me ASAP and could I make it on Mon 13th June at 3pm? I said that I could and that I was very excited.


    Further Information

    Other Haematopoietic Stem Cell Transplantation (HSCT) Blog Sites

    Wed 15th Aug 2012

    We are fast approaching my 1st birthday for my new immune system as I received my stem cells back on 17th Aug 2011. So I thought I should do a blog update, here goes...

    I have a bit of news for everyone that has been following my blog as I had a neuro test, EDSS test and an MRI the other week.

    My EDSS has only improved v slightly (I had thought by 1 whole point but as at my last EDSS my score had already improved to 6.5 from a 7)  and giving me a score of 6, so 0.5 improvement, which is still really good cus I worship all the blessings that come, whether big or small. My Neuro test scores had improved massively tho with my dexterity, coordination and cognitive function, which was a very encouraging development.

    So, it was then down to the last thing remaining - my 7T MRI scan. I had a beginning phase of MRI, followed by the gadolinium contrast dye (this shows the active lesions on my MRI although I guess I'm teaching my granny to suck eggs by explaining that). After I came out from the MRI nice and refreshed after my snooze in there, I was shown the MRI and I'm very pleased to report - no active or new lesions!!!

    Of course, over the next few years I will be monitored quite closely and need to undergo these tests regularly but after having had this first one, it looks quite promising.

    I am back at work now, having had a slow phased return over a 12 week period to build up to full time. I have had an Access to Work assessment carried out and a report compiled for my needs, such as a hearing system to wear with direct fm input into my hearing aids from a device called a receiver, that looks a bit like a small dictaphone, which sends the sounds ie. speech, by fm waves directly into my hearing aids - this cuts out all of the interference to sound waves along the route into my hearing aids. Super cool! Other equipment is for things like special phones (amplified and text phones) and a special keyboard because due to left hand finger amputations and me now typing with one hand, the traditional keyboard is too big for one handed operation. I was unable to go to clinic though until my hearing equipment arrived. I am trying to shadow my colleagues in clinic (thank you All of you for your kindness and patience). I do find it very frustrating and massively fatiguing/exhausting to try to receive the communication but due to the clinical rooms being very loud and echoey (is that actually a word :0/ ), there are (for obvious cleanliness reasons) no soft furnishings which would diffuse the sound making it softer and my lip reading skills, still being very undeveloped (although I will be attending lip reading classes beginning in September). My manager Sarah has been ace though, by not rushing me or putting any pressure on me and allowing us both the time to better adjust, assess and evaluate along the way. But me, being the eager beaver that I am, just want to do my job and get tuck in again. Mentally, I can but physically I can't, my body just let's me down a bit there. I'm confident though that I will get there and it'll just take some time, I need to treat it like a marathon instead of a 100M sprint (yes I have been watching the Olympics, Usein Bolt... Of lightening)!

    I've been for my prosthetic fingers to be cast and made and I go back to see the prosthetist on 24th Aug to check the sizing and to do the colour match and nail shapes and he'll finish them off and I can hopefully pick them up in Sept. I can't wait til I get them, I'm hoping that they'll help with my self image issues - I know I'm being vein but I'm really self conscious.

    I've seen my CBT worker, I've completed my assessment which took 2 x1 hour sessions, jeez, I must rabbit on! She said she's unsure if CBT is the right therapy for me but we've both said we'll give a go and if not refer me on elsewhere.

    I've been assessed and allocated a social care worker who has ordered me some equipment of which is a minicom/textphone (as I can't afford to buy one myself cus there about £500!) - I  badly need this, as everywhere I try to call and say that I'm deaf and can't hear on the phone very well, so they then tell me that they have a minicom system and I'm like "yeah?  Well, there's no need to brag about it"! Lol. So I guess that shows my predicament.

    Here's a snap of my lovely new eyelash extensions because after my HSCT they grew back much shorter than they used to be, hence my extensions! Just don't pay any attention to my lazy eye, lol!

    Here's a snap of my lovely new eyelash extensions because after my HSCT they grew back much shorter than they used to be, hence my extensions! Just don't pay any attention to my lazy eye, lol!

    Over the last 12 month I have found myself comfort eating - A LOT! I have piled on the pounds and I really need to get my diet head on but I can't seem to find it, maybe Kate Moss is wearing it! It just seems like since all the chemo last year (the chemo that you have makes you have the biggest appetite) I am like a bottomless pit, I just never seem to feel full anymore! I am starting to cut back on all food but especially the junk and I've brought our rowing machine out of the graveyard (with good intention but it's so humid ATM)!

    I had a bit of a scare last Fri (10th), I became unwell at work very suddenly with acute chest/abdominal pain on my left side (it felt like i'd taken a blow to my abdomen and i'd been winded) so I was taken to A&E (lucky I work in a hospital eh?). Where they started doing lots of tests to check my heart & blood pressure, my chest/lungs x-rayed, blood tests, urine tests, even measuring my calves as they had become swollen. They said they were being very cautious after all that body went through in the last 12 months - omg, that is soo last year! I was given a DVT jab and admitted to a surgical assessment ward as an inpatient - not again, I think I've had my fill of being an inpatient now. When I got to the ward I recognised one of the Dr's from when I was having my HSCT on Fletcher ward. She was amazed to see me. Then 2 minutes later another Dr came to see me, he'd been one of my Dr's when I was very ill in ICU, I didn't remember him and he said that he wasn't surprised because I was in a coma at the time. Again he was amazed to see me walking, talking, etc. again after what I'd been through last year. He also reiterated what the A&E Dr had said about wanting to check very thoroughly after all that happened last year and said that they may want a CT scan.

    About an hour later another Dr saw me and I asked would I be able to go home tonight and she said maybe tonight or tomorrow morning all being well - please not overnight, I feel fine now and I want to go home, I told her this and she said she'd talk to my registrar about me doing my DVT jabs at home. About half an hour later my registrar saw me said the same as the other Dr's about wanting to be sure before letting me go home after all that my body went through last year (this is all very repetitive). She said that they don't think it is/was DVT now but wanted to do one more blood test as it was over 6 hours since I'd felt ill and this blood test would show them if anything such as DVT or heart problem was to blame but if everything is fine I can go home then. The blood was taken and I was told that we'd have the results in about an hours time. The dinner lady came round to take food orders (I declined as I'm adamant I'm going home). Tick tock, tick tock! Then the Dr came to see me, said results were all fine and nothing had been picked up, so I could go home but to rest plenty over the next few days and if I felt unwell again to go straight back. Yay! I'm going home! I can't help but wonder what it was though. Idiopathic ie no reason? MS hug maybe?

    Well, I am almost 1 year post HSCT now (already, where did this year go)!

    - Do I ever feel sad of all that I put everyone through? Of course I do, I cannot begin to imagine what they all went through and it makes me feel really guilty for being so selfish by having this very high risk treatment but I think I naively believed it'd all be ok like it was for all of the others I've been in touch that have also had HSCT for MS. So, to those  people who had to see me go through it all.... I am so, so, very sorry.


    - Do I wish things had been different? Very much so, I just wish I knew a dr who'd be able to translate what the reply from the hospital to my letter requesting answers really means  and be able to point me at the right direction of the further  questions I still need answering.

    - Do I miss all that I have lost due to being so ill? Fingers and toes, not so much but  hearing loss, now that, I miss for every minute, of every hour, of every day! Music is  pretty pointless as I can't hear it how it sounds and I have to only listen to music I knew very well before my HSCT, so new music is just an irritating noise to me as I can't make sense of what I'm hearing. I can't use the telephone anymore and avoid using it as much as I  can as I can barely hear on it - even with the amplified phone as it is a) too quiet and b) I can't lip read on the phone, which shows that a lot of my communication is using this method. I find also that I miss out on watching films at the cinema because I need subtitles and my cinema only show 2 films per week in subtitled viewings and it's not always the films I'd like to watch but I'm pleased that they show the ones they do. One of my biggest issues though is that I'm an Inbetweener! Not like the really funny tv show film. But I'm in between one community and another meaning that I don't feel like I belong to either. To the hearing community - I'm deaf but to the deaf community - I'm hearing!

    It is quite a conundrum! I need to learn to British Sign Language in order to be involved in the deaf community but for the upcoming academic year clashes with my lip reading classes of which I need to learn much better not just for my work but for general day to day living too.

    - Are we going to be able to enjoy actually getting to celebrate our wedding anniversary this year? You bet we are! Especially because I'll be awake this year! Last year it was our first wedding anniversary when I was in a coma in intensive care fighting for my life. So there wasn't any celebration then. So this year we'll be celebrating our wedding for the first time but on our 2nd anniversary and it will be so special to us.

    - And finally.... Am I glad I did it? Yes, because we don't have to live in fear of an ms relapse anymore!

    Me at our friends Charlotte and Darren's (CharDar) wedding on 23rd July which is exactly one month before our wedding anniversary!

    Me at our friends Charlotte and Darren's (CharDar) wedding on 23rd July which is exactly one month before our wedding anniversary!

    The End... For now anyway!

    Sat 5th May 2012

    I thought I'd better stop being a lazy bum and write a new blog entry. I've been such a sloth, I'm sure if I lived in a rainforest as sloths do - I'd be covered with moss! Not quite the rolling stone that I once was, that's for sure! Ok, well I'd better get on and do an update on everything since my last blog entry.....

    I'll start with the most important matter, which is that I am now 9 month post transplant and I still have not had a ms relapse!

    I did think a few months ago that I was having one because I was med free due to no pain anymore and then I started to get the lovely ms pain again! It wasn't as bad as it had been pre-transplant but I started to take meds again for pain relief, for what it's worth.

    My neurologist the superfab Prof Cris Constantinescu, has said again that Sativex (the cannabis oral spray) would really help me but still, as yet NICE and all of the local PCT's still haven't authorised it for use but he said as soon as it gets a green light then he can prescribe me it (I can have a private prescription for it now but it would cost me about £500 per month, which I can't afford). I find it hard to accept, that, despite all of the evidence of benefit to ms patients, that this drug still hasn't been approved for use and we are instead at the mercy of opiate drugs, which do not really combat the pain they just dope you up so that you care less about the pain and you have to keep increasing the doses as you become more dependant and tolerant of these drugs!

    My toes have now fully healed from the amputation surgery I had on the 3 middle toes on both feet. I keep getting blisters though because the skin is still quite delicate, which can be a bit sore but nothing I can't handle. My feet are so small anyway as my shoe size is only a child size 13 or 1 but if I didn't have all of my big toes I bet I'd be a child size 10!

    Stella's Toes

    I am going to prosthetics in 15th June, which is to get my fingers moulded so that I can have some prosthetic fingers made. This will be really good because I have a few weddings coming up and I would really like to be able to wear them.

    I can have some toes made too but not until they've "bedded in" a bit more - so no sandals this summer then. They are all just for cosmetic purposes and won't have any function but it'd be really nice to appear "normal" to the world! I know that I'm being really vain, as I only have fingers and toes missing not full limbs or anything but I am finding more and more, that I feel my self esteem is under crisis and that my image to the world is under a microscope and I know it's just my building paranoia but I can't change how I feel about myself.

    Still, I have my new shrink (my other shrink Emma had gone on maternity leave a while ago and has had a bonnie baby girl) coming to see me on Weds to assess me, etc. and start my therapy. Emma my previous clinical psychologist (that's their proper title, not a shrink as I tend to call them for short), tested me and Marc and the outcome was that we both have post traumatic stress disorder following all that happened to me last year. Marc also has been given the opportunity to see a specialist, who he is seeing soon too and we both hope that with the right help we can get past it and move on with our lives.

    I have also been looking into going back to work in the near future. I was offered retirement on ill health grounds but I really don't want this. I want to be able to work and do my job again, so I am being assessed at work this week by Access to Work, who are an organisation that offer practical solutions for people with disabilities or health problems that affect their working life. So, I'm really looking forward to this as my work is really important to me as I really believe in what we do.

    I'm  going to be having another bunch of immunisations again on 18th May (the day after my birthday). As you will have seen from the earlier entry I'm a tad behind with my immunisation schedule but I've had the 1st bunch of jabs and I now have monthly jabs to build up my immunisation against things like:- tetanus, polio, typhoid, dyptheria, pneumonia, flu and so on and so on. None of the jabs that I receive are live jabs tho, so don't really get side affects as such, which is good.

    I have a special medical bracelet now for in case of emergency, it says " I am at risk of TA-GvHD, if I need a blood transfusion (red cells & platelets) must be gamma irradiated RhD A-". The TA-GvHD is short for Transfusion Associated Graft versus Host Disease which is a life threatening complication that may occur if blood products are not gamma irradiated first before transfusion into a patient who has undergone HSCT.

    Stella's Medic-alert bracelet

    Stella's Medic-Alert Bracelet

    The RhD A - is my blood group which is rhesus A negative, which is only 7% of UK population, trust me to have an awkward blood group (my mum and grandma were the same but no one else is in the family - strange)! While I was looking up the abbreviation for my blood group I came across a wacky website claiming that those with rhesus a neg blood type are from an ancient alien ancestry! They say that this blood group often have green eyes (check), red hair (I was ginger as a baby and still have red in my natural hair colour), an extra bone on end of coccyx (how would anyone even know that), psychic occurrences (check.... Don't ask! Just know I've had some spooky stuff happen before) and have a high IQ (I'm 146 so check), maybe that's why my neutropenic phase of transplant went so wrong... My alien DNA!!! Pmsrofl!!! Don't you just hate people who laugh at their own jokes.

    Stella at Mar's Mums birthday

    Me at Marc's mum - Diane's 60th birthday celebration! She asked for people to give money as presents so that she could donate it to MSRC! Oh and check out my hair, it's growing so fast and it's curly now!

    20th April 2012

    Yay! I've had all of the beginning phase of re-immunisation jabs today.

    I queried it with my GP a week ago because others that I knew that received HSCT had to be immunised again as our immunity is that of a newborn baby.

    A letter came yesterday from haematology, saying as you are now 3 months post transplant we advise you to follow the following immunisation programme!

    What a bloody joke, I'm 8 months post transplant! I should have received all jabs needed and have complete immunisation

    Grrrrr! Still, better late than never! I'm just glad I haven't caught any nasty bugs in the meantime.

    Love

    Stell x

    20th March 2012

    Yay! Been to see orthopaedic surgeon to check on toes healing and assess if more surgery needed but the man from del monte says no!

     No more surgery! Fantastic news!

    He's given me some antibiotics and swabbed one of my toes as its a wee bit infected but other than that it's all good in the hood! I've had my stitches out, didn't cry at all (i am such a big brave soldier) and only flinched once cus it was tugged on to get it out (nearly broke Marc's fingers by squeezing too hard on that one) and toes have had a good clean. They're now dressed again and need dressings changing every two days, then go back next thurs to see surgeon again to check again.

    Toes so much more comfortable without stitches, they really pulled on the skin!

    Check my kinky boots! Whit whooo (wolf whistle) lol! What d'ya think? They come free with every toe amputation too!

    Stella's Boots

    Ha ha ha! My grandma had a pair v similar too! They're hot! I daren't go out in them just in case I get arrested for causing a breach of the peace! I'm going to a party on sat too, it's a good job I'm wearing a maxi dress to hide them or people would prob wanna fight me for them! Lmao.

    Oh, I'm so silly :0P x

    8th March 2012

    I'm staying in bed today!!! All day!!! If I thought my feet hurt yesterday, that was a walk in the park compared to today cus just walking from bed to the en suite is worse than trekking up everest! My toes are screaming murderer at me with every step! :0(

    My poorly toes and check out my iodine tan - David dicko would be well jell if he saw them.... Unless he uses that to achieve his tan! Love Stell x

    Stella's Feet Post-op

    Stella's Feet Post-op

    7th March 2012

    Well, I'm out of surgery, success! In typical Stella style I was asleep through it all! Still numb from waist down from spinal anaesthetic but movement starting to come back slightly. Itching like crazy all over my body tho which is due to the spinal too! But I'm fed n watered and doing well. :0) love stell x

    OOOOOOUUUUCCCHHHH!!!!!!I guess all of the anaesthetic has worn off now cus my feet are killing me and not in a nice drunken night out dancing in high heels way nor in a shop til you drop but lots of lovely shopping bags full of gorgeousness kind of way either. No my feet are literally killing me, it's like the pain is trying to kill me by making want to neck a big fat barrel of painkillers washed down with a gallon of vodka! Drama queen I hear you say, who? Moi? Nooooooooooooo!

    Sat 18th Feb 2012

    I forgot to add yesterday, that I've been to prosthetics again on 14th Feb to get a device so that I can carry walking stick in my left hand (which is where I need to hold it). They said that they will send me an appt in a couple of weeks to get my hands casts taken to make me some prosthetic fingers for my left hand. I was a proper girl about it too and asked if I will be able to paint the nails on fingers and toes (when they can be made after my op). He said they used to use acrylic nails but found they kept popping off and the nails they use now are silicon like the fingers but a bit of a tougher silicon but still flexible like the fingers and based on that, he recommended using a flexible nail varnish like the Rimmel one with Lycra in it. Yay! My toes will look as pretty as ever in my summer sandals then, although its a bizarre thought (summer sandals) when it's a bit snowy and sleety today and definitely a snugg booty slipper day!

    Stella's Stick Adaption

    I have noticed too, also on a girlie note, that my hair is starting to get a bit wavy! I'm gonna be a curly girlie! Coolio! But look at how much its grown too and I only had stubble in Dec '11 and it's almost in a hairstyle now!

    Stella's Hair Feb 2012 

    Stella's Hair February  2012

    Stella's Hair December 2011

    Stella's Hair December 2011

    I've also been teaching myself some British sign language and I can now finger spell the whole alphabet. I can say, "hello" "how are you?" "goodbye" "please" "thank you" and much more. I have a book which I bought from Action for hearing loss and it also gives access to an online learning tool too. So I should be able to know a few by Sept '12 when our local college enrolls again (have to wait til then for my lip reading course too)!

    We have also got in touch with social services who are going to arrange for a social worker to come and assess me to see if there is any equipment or adaptions for me. I didn't know this service was available as I hadn't been told by audiology or even seen any leaflets anywhere for this service. Thankfully, my fab friend Karen (who's the best BSL interpreter and is actively involved in the deaf community) got in touch with me and told me about this service being available in Leicester (mine and Karen's home town) and how it should be available or similar in Derby too.

    I can't wait for 1st April either not because I have a fun April fools day trick it is so that I may enquire an application for a hearing dog. These dogs are fantastic, the work they do is amazing and prove that they are so much more than just being mans best friend. They alert you to sounds like doorbells or smoke alarm or even alarm clock. For example if you're in bed asleep they pull quilt off you or jump on you to alert you to say an alarm clock but if that's not the case then you hold you palms up and ask where and the dog will show where the sound is coming from, whether it be be a burglar alarm or smoke alarm. If you are already up and about such as sitting watching tv the dog will let you know of a sound by putting their paw on your knee. It is a 5 year long waiting list but it'll be so worth the wait and to be able to go shopping and if an alarm goes off the dog gets you away from the alarm. For more info check out the hearing dogs website to see some of these clever pooches in action.

    Fri 17th Feb 2012

    I've been to Derby Hospital this morning for my pre-op. We had a few questions and forgot to ask even one of them but we were kind of rushed along a bit (a bit like an Aldi supermarket checkout)! Marc will call my consultant's secretary later to ask for info about the how long surgery will take and whether I can take my meds that morning, etc.

    We also called my MS nurse today - the magnificent Maxine! Marc had a chat with her as my leg pain is getting much worse again.

    I started back taking Baclofen about a month ago because I was experiencing a bit of spasticity and muscle spasm but nothing major and I'd been doing OK with it until this Tues 14th Feb (Happy Valentines to you too MS). I found myself in quite a lot of pain, not as bad as before my HSCT but pretty bad still. Over the next few days it got worse thought because as well as the spasm and spasticity, I was now getting some burning sensations in my left leg. The burning seemed like a searing heat, much like a red hot poker being shoved into my heel and up the bones in my shin and along my thigh to my hip.

    All week, all I keep thinking is please don't let it be a relapse, please don't let my MS progress! After everything that I have put myself, Marc and our families through, in the last 12 month, please don't let it have all been in vain! I've tried googling post HSCT and MS relapse and haven't found anything of much use (oh yes, I know it was a crazy thing to do anyway) hence why Marc called Maxine. Marc explained that the rehab Dr I'd seen early Feb had said it was probably due to infection in my toes causing pain in legs and Maxine asked if I had any redness or discolour to my legs to rule out DVT, of which I don't have any. She said she would have a chat with Cris (my excellent neuro) and get back to us. I really hope for some positive news or advice or just something to stop the "crazies" from taking over!

    I just don't know what it all means?! Did the transplant not work? Is it new damage? Or is it just my old symptoms returning? Can the transplant stop relapses but not progression? Ie. if I am secondary progressive ms, would the transplant stop my having relapses but not stop progression? If it is just old symptoms returning, then why was I symptom free for a while? Why they go, to then come back? I am very confused, anxious, upset, angry, distressed and overwhelmed by it all! I need answers!

    Answers on a postcard to P O Box Bewildered,UK.

    Sun 5th Feb 2012

    As you all know from my last blog entry, I said that I was....

    1)  Going to write a blog entry once every month unless something important happened
    2) On a five month wait for my toe op
    3) Going to campaign and fight by any means necessary to bring the date forward

    Well, by me adding this blog entry so soon after the last entry, it must mean I have something important to report. It must also be about my toes and the surgery needed as they are my biggest problems right now and it must also mean that we have managed to bring the date forward!

    Yay! Yippee! Woo hoo! Hurrah! Coolio! Whoop whoop!

    I am very pleased and overjoyed to say that I have my surgery booked for Wed 7th Mar 2012!

    The campaign began with Marc phoning PALS (patient advisory liaison service) at Derby hospital on Wed 25th Jan 2012 to ask them to investigate whether the surgery can be brought forward and they asked us to ask our GP for a letter stating the case of need to bring date forward from July.

    On Fri 27th Jan PALS called to say they are dealing with case and it has been passed to manager to discuss with head of orthopaedics. That afternoon we saw Kate the lovely practice nurse at our GPs to get my weekly check up on toes and we reported to her about toe surgery wait and she said she'd speak with a great GP called Dr McKay about toes as he has been called in by Kate twice before to check on toes (he did my referral for my toes  to hospital initially), so he knew how bad they are and ask to write letter to Mr Rajan to explain circumstances and request that he expedite me to receive surgery sooner, based on not just the physical state of my toes but also my psychological well being. Kate rang that evening to say that Dr McKay is writing the letter that evening. A very huge massive thank you to both Kate and Dr McKay!

    On Wed 1st Feb i went to see the very caring, Dr Bird at my GPs and we discussed how I was doing with my HRT and my menopausal symptoms, of which I'm doing quite well and I have improved a bit but before we increase dosage we said we'd complete a full cycle/packet and then review it better. I spoke to her about my spasticity and muscle spasm and we have increased my Baclofen dose, only very slightly tho because it is in no way as unbearable as it was before my HSCT. We had a call from PALS today, to say they had challenged as much as poss but unfortunately as my surgery was being classed as a routine op, the date couldn't be brought forward. We received a copy of letter written to surgeon by Dr McKay (GP) - a very good letter!

    As of Thurs 2nd Feb, We now have to dress 4 toes on each foot now as my toes that had seemed ok are now in a lot of pain due to he vascular damage, I don't know what the surgeon will do tho because it now means the only toe unaffected is the the little toe on my left foot and big toe on my right foot. The big toe and the little toe are the most important toes on the foot for balance and both are needed on each foot plus another of my toes now looks (in my small medical knowledge as I'm no expert) as tho it is getting worse!

    On Fri 3rd Feb, after numerous missed calls from both sides we eventually spoke with Mr Rajans secretary who said my op is booked for Wed 7th Mar and my pre-op is booked on Fri 17th Feb, to run through the surgery, etc. We saw Kate again for our Friday visit and she said we both looked so much bright compared to last Friday, she said that she had never seen us so low as we were last Friday!

    It just goes to show that if you want something bad enough and work/fight/campaign to achieve it, then everything is possible.

    Ooh, I've just remembered! I have started to learn British sign language and am committing 5 letters in finger spelling, to my memory each day and I can now do my a-o in sign, 2 more days and I'll have the whole alphabet down pat!

    25th Jan 2012

    Hi everyone, Stell here! I hope you are all fine and dandy. I'm ok, still having loads of appt's for all of my new troubles but I'll just talk about the more interesting ones!

    Had physio on 10th Jan and was very pleased because we ran through my exercises and I had a test to see how well I'm doing and we were both pleased with it but still have a lot to continue with but she has taken my exercises that I do at home and made them slightly more difficult now but she said that until my toes are all better there's not much she can do until then, so to call when toes are better for an appt.

    On 17th Jan I went to see a really nice Dr (Dr Naboubi), an OT in his team and a prosthesist (not too sure if that is a correct title but you get what I mean) about my amputated fingers on left hand and whether anything could be done to help me.

    We discussed about things I struggle with and products that may make life a little easier. I now have a knork, which as the name suggests is a knife/fork! I also have a special non-slip sheet of a rubbery material to use eg, to hold a plate in place. I was given a special scrubbing brush for cleaning nails, etc which has suckers on the bottom to hold it firm to the work surface - v handy (no pun intended) for when I've been gardening!

    I was shown the prosthetic fingers and tried one on too and they feel a bit weird but look so realistic and even have nails on them, I was asked if it would be something of interest to me and I said definitely. Although they are mostly for cosmetic purposes, I told them that Marc's mum and dad had booked us onto a mini cruise (thank you Diane n Alistair) and we were also invited to a wedding and I didn't want to get into any conversations about what happened to my fingers or have any strange looks because I have amputated fingers. These are both happy events and I want to thoroughly enjoy them without being self conscious. I was told that they colour match and size match them so that they are almost unnoticeable. They gave me an appt for in 2 weeks to see about constructing something for holding walking stick in left (where i still need to use it but have had to use right hand at the mo as its better than nothing) and they also took a cast of my stumpy fingers on my left hand and said they will make some protective rubber thimbles before next appt, these are for me to wear so if I bash my fingers it won't hurt, fantastic! They also said that after my toes have fully healed they could make me some new toes too, so that I my toes will look presentable in sandals or flip flops in the summertime.

    At the end of the appt. I was told that if I needed them for anything at anytime, like if I was struggling with doing new tasks or hobbies for example, then I should contact them for an appt. and see if/what anything can be done. It's Amazing the things that can be done!

    On 19th Jan I went to see my lovely GP Dr Bird, who told me that (following a blood test on 12th Jan), I am now menopausal (as we had suspected) and I have been prescribed some HRT (Elleste) to replace hormones that, at my age, would normally still be produced. I told her that I'd been getting quite stiff and restless legs and keep needing to move and stretch them, we discussed that this probably is from residual damage caused before my stem cell transplant and been prescribed Baclofen again.

    Went to CamTAD and saw Ansuya on 20th Jan to take phone back that I had borrowed to try out but as I hadn't got on v well with it and because hearing aids were altered again on 18th, we tried out another phone which I got on v well with! Ansuya also retubed my hearing aids as I said that one of them keeps falling out. We spoke about learning British sign language and I asked if she thought I could do it, what with my stumpy fingers on left hand. She said there was a sign language using one hand but she said that she thought I would get on fine with bsl and that others would be able to tell what I was signing too even with my fingers on left hand plus with prosthetic fingers this may make it a bit better too. She also gave us some details for how to get home installed with an alerter using lights in house for smoke alarms, etc. As we'd expressed interest in bsl, she gave us a sign language alphabet, some signs for most common used words, words used at work and even some word searches which instead of letters it has the hand signing alphabet used! Honestly, if the world had more kind and caring people like Ansuya and the team at CamTAD, the world would be a much much nicer place!

    At my appt. today, on 24th Jan with my orthopaedic surgeon Mr Rajan, he gave me 2 choices with regard to my manky, sore toes (the 3 toes in between the big toe and the little toe, so 6 toes at least) they were:

    1) Leave toes alone for necrotic tissue to come off by themselves and heal which will take about 18mth minimum to heal fully but I may still need to have surgery on them. He said that if I let them fall off naturally I will still have all the pain as the vascular damage will still be left on the toes and that is what causes the pain and unless I have surgery to take those parts away too, I will always have pain in toes.
    2) Have surgery sooner than later, (which the consultant said he would have if his toes were like mine) to amputate the toes and save as much skin as possible and should still (hopefully) have stumpy toes to have prosthetic toes in place because he said that the vascular damage extends down my toes from the necrotic tissue but he said unfortunately, I have to wait another 5mth for the surgery due to waiting lists.

    This will mean that by the time I have the surgery I will have had my toes - sore, painful and proper nasty for a whole year!!!

    So, really upset and angry now because naively I thought that today was gonna be the light at the end of what has been a v long dark tunnel! I'm so so gutted, I've been sobbing most of tonight, since leaving the hospital because I just want it all to be over. I want it to end, so that I can resume back to a normal life and not have to have toes dressed daily and have to go to see our practice nurse Kate (as lovely and caring as she is) weekly to check on the state of my feet and infection. I want to able to walk without my toes feeling like a blister has just popped on the tips, with every step that I take.

    For the first time since the transplant, I am feeling so low that I feel like I wish I hadn't had the transplant now what with all my complications but I really hope in 6mths time I will have gotten toes sorted and return to being happy about it again due to no more ms relapses and feel it was worth all this trouble! I think with everything I've been through now and managed and tried so hard to overcome all these things and remain fairly positive. This is, as they say "the straw that broke the camels back"!

    I've had enough! Stop the ride I want to get off!

    Friday 6th January 2012

    Stella has sent in some new photos of her toes, affected when she was so ill in hospital.

    Stella's toes with unhealing necrotic tissue

    Stella's toes with unhealing necrotic tissue

    Stella's toes dressed by Marc

    Stella's toes dressed by Marc

    Stella's toes dressed by Marc

    Stella's toes dressed by Marc

    Tuesday 3rd January 2012

    Happy New Year Everyone!

    I hope that everyone and a fab christmas and I wish that everyone has a super healthy, wealthy and happy 2012.

    My new years resolution ..... Not to have any invasive treatments this year! Lol. I know that my family and friends will very pleased to hear that after all that happened with the nearly dying stuff!

    I know I have been slack for a few months and haven't always been able to write my blog for which I really am very sorry, I've just been either really busy or worn out due to rehab and that I am still rehabilitating back into life again now that I am home. Oh boy, let me tell you, it's been quite a slog!

    I'm so happy being at home again with my fantastic hubby Marc and our 2 girls (our cats that is) after being discharged 3 weeks before than was predicted, due to:-

    a) my fast progress in learning to do everything again and starting to build the muscle tone again after my stint in intensive care.
    b) The hospital was having a bed crisis and therefore needed my bed more for a poorly person.

    I'm quite pleased with how well I've done and how fast I managed to progress to a point whereby the staff were happy that I'd be able to get around safely and be able to cope at home! I was like a baby 4 weeks before my discharge, had a catheter in (had it removed 2 weeks before discharge) and had to buzz a nurse if I needed bedpan, I had to be fed my food as my arms couldn't move due to muscle wastage too, drinking - I had drinks with straws, I was given bed baths and was dressed by the nurses, I couldn't really stand with out the rotunda to keep a hold onto, I was unable to walk at all!

    I can now do everything myself - I can feed myself, make my drinks again too, I can shower or have a bath (I have special lift in bath from the occupational therapist until I don't need anymore), I can walk and go up and down the stairs quite happily (OT sorted out having additional hand rails fitted on the stairs due to my lack of fingers on left hand making me a wee bit unsafe). I even did the Christmas shopping and cooked Christmas dinner (both with the help of my wonderful hubs)!

    Marc has been amazing, really helpful with everything but we work as a team and prop each other up where necessary. When I find things hard, Marc will step in and help or vice versa. I wear out quite quickly still but I'm getting there. What I'm having the most trouble accepting is that I have limitations and restrictions now! Rehab whether in hospital or at home is all about building up gradually and not rushing head on at things like the bull, that I am (Taurus star sign, if that counts) lol.

    But I'm not kidding myself, I know that now that I am FINALLY home, this is where I will be challenged the most and the OT said that this is when you do the most rehab! What with cooking, cleaning, shopping, laundry and and when I've completed my household tasks all successfully and not as fatigued and then when the time is right I look forward to going back to work!

    I went to a Haematology appointment at the end of November and I mentioned to the Dr that I had coughed up a few (really hard) blood clots. She listened to my chest and said my lungs were clear which is good cus I've been quite phlegmy too, I was asked to monitor it and if it persists then to see GP but it was probably from when I was in intensive care and because of tracheotomy most likely. She also discharged me as my blood and platelets etc, are normal again now. I asked about whether I am having the menopause due dreadful hot flushes esp in the night (I wake drenched), she said that because platelets are normal to stop taking northisterone 3x daily and to see GP re: menopause. My blood clot and catarrh have all cleared now thank goodness, I just have the snots in nose cus with my new immune system I catch colds and stuff now (not had a cold for 10yrs or more), so had flu jab last week. Taking no chances now!

    My lovely neurologist Prof Constantinescu (Cris) and 2 of the fantastic MS nurses (Maxine and Razia) came to see me at home the other week (wow!) and they had bought me some beautiful flowers and yummy choccies. We had a chat about when I was really ill and about the progress that I've made since. They were pleased to hear that I am no longer in any pain at all and no longer need hardly any drugs for MS symptoms! I no longer walk with 2 crutches and can now get about with 1 walking stick which is mainly for balance (physio have given me an A frame with wheels (a bit like a zimmer frame) to use when I have the bad wobbles or need to get around particularly uneven ground. My feet are hardly numb at all anymore (very disorientating) and my right foot is super ticklish again which  it hasn't been for maybe 20 yrs! I told them that I couldn't cope with the pain before transplant so even with the loss of fingers and with the deafness (both of which I am adapting too and the worst is over and done with), I so happy to have had the transplant as I no longer cry every night because of the pain and my MS was so active and each relapse was worse than the previous. So I am still very grateful for having had the therapy.

    The downside of that tho is that due to the necrotic tissue coming off of toes now and I also have a few toes with bone coming out of the open wound (sounds painful eh?) and it is very painful! I have an appt for end of Jan (earliest appt) to see orthopaedic consultant about operating on them (which may mean I break my new years resolution, because it may be an invasive treatment as I think I have to have general anaesthesia) as they can't heal as they are and Marc and our GP practice nurse - the lovely Kate, are doing their utmost best to try and prevent them becoming too infected! Thank you to you both for all of your help with everything!

    I also have an appt in Jan at Notts city hosp (must pop to intensive care whilst there to thank them for keeping me alive) for a prosthetics appt. This is to see what is available practically or even cosmetically for my hand?! I haven't a clue what to expect but I'll be sure to let you all know!

    I have already been to test my hearing using different devices with CamTAD (Campaign for Tackling Aquired Deafness) in Derby and they've lent me a telephone to try at home, my I-phone has a hearing aid function thankfully, although I still find the telephone extremely difficult and can only really hear Marc or my mum on it. I have purchased a personal listener which helps me to hear better at meals out with others, meetings, etc and I have also purchased a device to help me to hear the stereo and tv (although I still need subtitles) better! They weren't cheap (£450 for them both) but totally worth it! I heard music again 2 weeks ago for the 1st time in about 5 months, it sounds different to how it used very electrical sounding and the singers (esp male) sound like they have just inhaled lots of helium, making their heavy metal/rock voices sound more like Alvin n the chipmunks! Lol.

    I think the deafness is what I struggle with the most (even though at my last audiology appt I am now just severely deaf as opposed to profoundly deaf which I was initially) and I am, with the help of Marc and my clinical psychologist, working through this with family, friends and I'm learning to deal with it better when I'm in public too. But I'm not gonna lie because sometimes it really gets me down, I've been told that it is because I am going through a grieving process and that it is all still very new and therefore very raw. Marc and I are going to go to lip reading class tho, which I do a lot of already but would still benefit from learning from a professional and as soon as they start the sign language courses again in Sept then Marc (I love you, you amazing man) and I will go along to learn sign language too (which is free for deaf people and their family), as another method of communicating which would be very useful esp in noisy/busy places, ie. supermarkets, shopping centres, etc.

    Well, I think I've warbled on for long enough now - oops, sorry! So, goodbye for now and I'll keep you all posted maybe once a month with how I'm doing.

    Stella's Left Hand Now

    Stella's Left Hand Now

    Take care everyone and keep well

    Love Stell x

    13th December 2011

    Stella update.....

    I have man flu!!! It's actually just a bad head cold but due to my prev super-charged immune system, I haven't had a full blown head cold since maybe 10yr or longer ago! But since stem cell transplant and getting a new immune system, I am suffering - I'm not used to feeling poxy like this! I had forgotten what it felt like.

    Welcome back to the human race, Stell! Lol! X

    Ps. Sorry Marc that I've given it to you too! Love ya!

    12th December

    Stella update...

    I have been to CamTAD (campaign for tackling acquired deafness) and I tried lots of different hearing equipment like the telephones, tv hearing loops and personal listeners. It was such an amazing experience to be able to hear the tv again and not have to read subtitles! I have already placed an order for a loop listening system and have also ordered a beginners sign language book! :0)

    I'm very happy

    Stell x

    10th December

    Stella update: Stell received a referral for prosthetics for her left hand, hopefully we will have more news on this soon.

    We would like to thank Kate our practice nurse for seeing us early yesterday she saved us a second trip to the doctors in the day.

    Love you Stell

    Marc x

    7th December

    Stella's new photo 7th December

    Stella update.....

    I spoke on the phone tonight for the first time in over 4mth!!! This is because my hearing aids have been t-function enabled now ready for CamTAD (Campaign for Tackling Acquired Deafness) on Monday, so that I can try more hearing devices. Yay! I am so pleased to be able to try to overcome some of the isolation caused by hearing loss! :0)

    Love Stell x

    6th December 2011

    Stella Update: We've had a busy couple of days.

    Yesterday's adventure saw Stella's neurologist & two MS nurses come to visit us from Nottingham to us in Derby. It's not very often a professor does home visits especially in the neighbouring county to the one they work in.

    It was really good to talk things through with what happened & what the future may hold.

    Today we went to see the plastic surgeon & Stell is having an urgent referral made to get her toes sorted out, from what we understand she may need an OP under general anaesthetic but we will have to wait & see.

    Stell also has now the "T" position enabled so we can try out hearing loop systems on Monday.


    Love ya Stell

    Marc x

    Friday 2nd December

    Stell update: Attempting to achieve a little slice of normality today before the Friday ritual of toe dressing by the nurse later.

    We popped into town to do a little Christmas shopping, Stell has found the whole experience very difficult with the amount of people pushing & barging into her, she's Stell getting back up to speed with the world.

    Love you Stell

    Marc x

    Tuesday 29th November

    Stella update: it's been a busy day for us both with an OT & physio home visit today. It's looking like Christmas could hold up the recovery so our fantastic OT is working really hard to put things in place so we have enough knowledge & skills to last us over Christmas so Stella's rehabilitation doesn't suffer too much ready to hit the ground running in the new year. I've been amazed how complex all the different parts of her rehabilitation have been in the community but everyone who has helped us has been amazing & so supportive of us both.

    Love you Stell

    Marc x

    From Stella - Just seen breaking dawn part 1 as showcase were doing a subtitled showing! Most excellent! Can't wait for part 2 now! I tried a special pair of ear phones too, that cinema lent me and I could hear parts of film but the subtitles were great as I could read them but I could also see the film too without distraction. Feeling v happy with my first deaf cinema experience! :0)

    Stella x

    Saturday 26th November

    Stella Update: I'm sorry the updates have dried up recently but there has been so much going on in both our lives over the past few weeks.

    Stell has been discharged for 3weeks now. She has been discharged from haematology this week which is fantastic news.

    Bits of her toes are now falling off & has been referred to plastics to double check there ok.

    Care & support in the community is very good but we've realised it takes time so were being patient very patient on this.

    Love you Stell

    Marc x

    Saturday 12th November

    Stella Update: Sorry I haven't updated much this week but we have been very busy.

    The district nurses helped with occupation therapy assessment which has lead to Stell having adaptations made to the house to make it more safe for her.

    I've become very good at dressing her toes. & this morning her big toe nail finally came off.

    We both realise that it will take time for things to settle down & for life to become settled, we're just happy to be moving in the positive direction.
     
    Love you Stell

    Marc x

    Wednesday 9th November

    Stella update: It's been a frantic start to life back home for Stell!

    Monday & Tuesday were dedicated to appointment & more accurately chasing people for appointments.

    Around Monday lunch time it became clear to us that nurse might not be coming so after a couple of phone calls to the district office we found out that rehab hadn't made the referral.

    While seeing the district nurse we mentioned the other referrals that should have been made at the time of discharge, the nurse made a few calls on our behalf & it looks like none of the referrals where made for Stell at the time of discharge, hopefully we have got most things sorted now.

    Love ya Stell.

    Marc x

    Sunday 6th November

    Stella update: On Thursday 3rd November Stell was discharged from Kings Lodge Rehab unit in Derby. The timing of the discharge was a great surprise to both of us.

    On Wednesday we were both informed Stella would be discharged on Friday (3 weeks ahead of schedule) but on Thursday due to a bed crisis Stella was discharged then & there.

    As I'm sure you can all appreciate the speed of the discharge was a pleasant surprise but has taken some time to get used to the idea.

    Stell is still receiving treatment in the community & as an out patient. We have the district nurse, audiology, haematology & GP all to see in the coming week with physiotherapy, occupational therapy, plastics including prosthetics to chase up.

    Stell hadn't had a house assessment by occupation therapy by the time she was discharged which is very important considering we have two flights of stairs to manage.

    Love you Stell

    Marc x

    Tuesday 1st November

    Stella update: Nothing new to report on the progress front apart from Stell continues to work really hard.

    Stella Doing Her Physio

    Stella Doing Her Physio

    It occurred to me the other day that I've not communicated a significant piece of information!

    When Stell was in Intensive Care & there are pictures of Stell smiling & generally responding on pictures she has no recollection of her time in intensive care apart from the last day or so but she did have some very strage dreams that in someway make sense to what was happening to her at certain times.

    Further Update 1/11/11

    Stella update: Today's busy schedule included breakfast club (Stell nearly fainted) & physio working on arm & shoulder weakness.

    Stella's walking is that good now she is walking unaided around the ward as long as there is a member of staff to supervise her.

    Stell is also allowed home every weekend as part of her rehab.

    Her hair is growing stupidly fast & it's so soft, baby soft actually!

    Stella's Hair

    Stella's Hair

     Love you Stell

    Marc x

    Monday 31st October

    Stella update: After a successful weekend at home Stell has been back on the Physio & Occupational Therapy trail.

    Stella waiting outside Audiology

    Stella waiting outside Audiology

    She is working really hard & doesn't ever complain even though I know her physiotherapy has become much more demanding over the last few sessions.

    At the weekend we did absolutely nothing apart from chill out.

    Love you Stell

    Marc x

    Friday 28th October

    Stella update: Big news this weekend, Stell is coming home for the weekend! We have had to convert the spare room downstairs into a bedroom/living room but it's so worth it just to get Stell home for two hole nights. She's making such good progress at the moment.

    Stella update: Second of the day, we have just gotten back from seeing the audiologist & we finally have answers, the type of hearing loss is permanent affecting the hair on the cochlea which is affectively nerve damage. We have info on groups that can help us with equipment & support so all in all a very good appointment.

    Love you Stell

    Marc x

    Wednesday 26th October

    Stella update: Today is turning out to be quite busy.

    Stell has an audiology appointment I hope they will be able to shed some light on Stella's hearing because apart from being given hearing aids we have had no information on the hearing situation we don't even know how to clean them!

    Also today while Stell has her physio her occupational therapist is doing a home visit to asses the house.

    Later Stella update: hearing test done by audiology & results were surprising, there has been a change with both ears more equal so hearing aids have been adjusted accordingly, hopefully this will help Stell.

    Audiologist still unable to answer questions it's was the wrong "type" of appointment so an "appropriate" one is being booked.

    Love you Stell

    Marc x

    Tuesday 25th October

    Stella Doing Physio

    Stella update: Another physio squeezed into Stella's busy schedule & again more good progress has been made.

    Stell would like everyone to know the reasons why she hasn't been keeping up to date with her blog is that's she's been a busy girl with, physio, occupational therapy, breakfast club, ward rounds, & general poking & prodding that by the time she gets round to writing her blog it's too late at night to do it.

    Love you Stell

    Marc x

    Stella doing physio

    Monday October 24th

    Stella update: After a very successful weekend with much needed time at home for me & Stella but today was back to the hard graft of rehab.

    She had a good physio session but has left her quite tired this evening after her hard work in the gym.

    I'm very proud of you Stell.

    Love you Stell.

    Marc x

    Sunday 23rd October

    Stella update: Sat at home for the second day running with Stella, after yesterday was deemed a success by the nurses she was allowed to come home again today for a few hours.

    This weekend has turned out to be one of our best weekends together it's amazing how the little things are now so important & special to us.

    Love you Stell

    Marc x

    Friday 21st October

    Stella update: Tomorrow Stella is coming home for a glorious 6hours!

    This a very important step for Stell, she has been very home sick over the last couple of weeks.

    I'm very glad the house has a ramp to the front door & wheelchair wide doors!

    Stella further update: Stella has managed to sneak off the ward for a couple of hours at home in preparation for tomorrow.

    She has given her seal of approval to our temporary living room situated on the bottom floor as stairs are out of bounds at the minuet.

    It has been lovely just spending time together away from a clinical environment.

    Love you Stell.

    Marc x

    Thursday 20th October

    Stella update: it's been a busy time since Stell moved to rehab with a lot a really good progress mainly through the hard work Stell has put in.

    We had a trip to the pub across the road from the hospital the other day, which was really good for everyone concerned.

    Stell currently has an ear infection which is making her feel fairly rubbish.

    She has also had her catheter removed & is being monitored closely on that. Stell is an an amazing person.
     
    Love you Stell

    Marc x

    Sunday 16th October

    Stella update: she's feeling a bit poorly today.

    Woke up in the early hours with a migraine which with the symptoms of feeling sick & dizziness brought back memories of being very poorly.

    The nurses called me & asked of I could come in to be with her, so we're just relaxing.
     
    Love ya Stell x

    Marc x

    Saturday 15th October


    Stella update: Stell has been further than she ever has before in her electric wheelchair.

    She braved the chaos on the main entrance for a Costa coffee & little slice of normality with me, it was fantastic.

    It's amazing how the small things feel so good when they haven't even been a possibility for what feels like a life time, it's hard work but so worth it.

    Stell you are the best,

    Love you xxx

    Marc x

    Friday 14th October

    Stella needs to go home very soon, I'm sick of hospitals!!!

    I can't even break out in my electric wheelchair cus there's 2 security doors to get thru!

    Plus like Marc and my Mum said I'm getting the help I need to get me back on my feet (literally and metaphorically).

    Grrr damn, I hate it when they're right!!!

    Later Stella update: she's working really hard in physio everyday & making what can only be described as fantastic progress. We had a meeting to discuss what the plan is for Stell & she has been given a discharge date or around six weeks, who's betting she we do it ahead is schedule...any suggestions how much she will beat the target by?

    Love you Stell x

    Marc x

    Thursday 13th October

    Stella update: She's continuing her good progress at rehab, she's having physio most days which is showing real improvements.

    She's also getting more confident in her electric wheelchair which is really good to see, these little signs of improvement are very welcome & massive steps forward.
     
    Love you Stell.

    Marc x

    Tuesday 11th October

    Stella update: Yesterday Stella made really good progress.

    She walked from the gym to her bed (aided with a physio on each arm) she also made a cup of tea & toast in her OT session.

    Stell is amazing.

    Love you Stell

    Marc x

    Monday 10th October

    Stella update: She's settled in really well at King's Lodge & has come on in leaps & bounds the few days she's been there.

    She's got the used of an electric wheelchair in the hospital with is fantastic.

    There is a big meeting scheduled for the end of the week to discuss action plans, timescales & getting Stell home which is such good news.

    Love you Stell

    Marc x

    Wednesday 5th October
    Stella update: late today stell moved from Nottingham to Derby hospital to start the next phase of recovery...on to rehab!!!

    Saturday 1st October

    Stella update: We've had a mixed bag today. I got to the hospital early so we could watch the rugby but more importantly it gave me a chance to shower stell for the 1st time since becoming ill (shes been having bed baths) it was hard work for both of us but the results were worth it :) we enjoyed the sunshine again with a trip in the wheelchair.

     After that stell had a little sleep, I think the excitement tired her out!

    Love you stell

    Marc x

    Stella Update from Stella! Friday 30th September

    Tues 27th Sept 2011

    Hi everyone, I'm back! Back from the dead and still smiling! Lol!

    I know the hubby has been keeping you all up to date with what has been going on, most of which I hadn't got a clue about as I was either unconscious or heavily drugged and in la la land, so thanks Marc for keeping everyone in the loop.

    But in summary here's  what I do know.........

    2 weeks in a coma
    4 weeks in intensive therapy unit (I hear I was a proper poorly girl and the nurses didn't think I'd make it and gave me 1% chance of living  -  hahaha here I am lol!
    2 weeks on the emergency ward
    Back to Fletcher ward (yay!) in Haematology
    Hearing tested - deaf as a doughnut but I have some hearing aids which is great just need to used to the damn things cus everyone sounds like the teacher in Charlie Brown!

    4 fingers amputated down to the 1st knuckle up from hand as they were like witches fingers (should've saved them for Halloween), they were all black and dried out and GROSS! They wanted me to let them drop off naturally as it saves more tissue and less risk of infection but I said no way! I could just imagine, I'm eating my breakfast and splash, there's my finger in my bowl and I'm not a fan of breakfast at the best of times but that would put me off permanently!

    Both of the above  are due to the drugs in ITU, the drug that made my fingers and toes  manky is called Noradrenaline but I also had septicaemia helping out too. My hearing loss is due to a drug called Gentamicin which is a very powerful antibiotic reserved only for the very poorly. Apparently any drug ending with icin may cause hearing loss!

    I can't do much for myself due to my muscle wastage in my torso, arms and legs, so need to washed, dressed, fed, etc by someone else which is very difficult for me being a tiny, teeny, oh ok, a huge control freak!

    I did stand yesterday though, with the aid of a rotunda, a physio, Marc and a nurse but I still did it, my legs felt really weird and wobbly, I was like Bambi standing for the first time. My neuro is trying to get me into a rehab programme which would a) be in Derby (home town) b) the most important, I could go home! It's really bad but I've been here that long now I've forgotten what home looks like, all I know is this room! And c) in rehab it is daily and all day long, so I'd be back up and walking in no time! 

    Wed 28th Sept 2011

    As a part of my physio, today I was to go into the wheel chair. So, we got me standing on the rotunda, twizzle me round and into the wheel chair. Simples! I was then wheeled to the lift, out of haem building and into the great outdoors but not for long unfortunately. I'd been suffering a tiny bit of a poorly tummy and it was churning again, so off we raced back to the ward!

    We found out that audiology had discharged me, which is fair but as my hearing aids aren't aiding my hearing, I have been re-referred.


    Thurs 29th Sept 2011
    Had a lovely day today. When I'd got dressed I was seated in my chair, which was nice to be out of bed. After lunch Marc and a nurse got me into my wheelchair with the rotunda (which I felt really confident on) and off we went on our travels. First we went cashpoint, then to the shop for some ice cold drinks and then we went outside to sit opposite the cricket pavilion, in the shade and it was really nice on this lovely sunny day. Who'd think it's almost October with weather like this!

    Thursday 29th September

    Stella update: Not been the best day for Stella but not everyday can herald a massive progress.

    She's had an upset tummy & been to the loo more times I can remember but I'm becoming quite handy at assisting!

    Even though this has been the hardest journey I've ever been on I think I can safely say that I Love Stell more than ever and she tells me she feels the same which helps us both at this difficult time.

    Stella enjoys the sunshine

    Stella enjoys the sunshine

    Stella transferred to a wheelchair & we enjoyed a very short stroll around hospital grounds until her upset tummy got the best of her & we needed a hasty retreat! We have been out in the wheelchair again & managed a successful trip to the shop & outside where we enjoyed the crazy weather!

    Stella  enjoying being outside

    Stella  enjoying being outside

    She's doing so well at the moment her determination is humbling!


    Love you Stell,

    Marc x

    Wednesday 28th September

    Stella update: hopefully the physio can get stell in a wheelchair today so we can go out & enjoy some of this wonderful weather!

     Stella's Left Hand

    Stella's Left Hand

    Stell had her bandage on her right hand off yesterday so I've seen her new hand & it still looks as beautiful as ever!

    Stella's Left Hand

    Stella's Left Hand

    Love you Stell

    Marc x

    Tuesday 27th September

    Stella update: While she was out of action my Facebook updates were transferred to her blog on the MSRC website but because she has got some use in her right hand Stella is starting to write her own blog again.

    You can read it at the MSRC website.

    I will keep my Facebook  posts updated too.

    Thank you everyone for you're support in this most difficult of times. Thank you all for your continued support because in many ways the adventure has only just begun.

    Marc x

    Monday 26th September

    Stella update: We've had some good progress today she stood up today for the 1st time in about 6 weeks with the aid of my self, a physio, a nurse & a rotunda!

    She had her poorly toes redressed & we get to see her "new" fingers on Thursday.

    Love you stell

    Marc x

    Sunday 25th September

    Stella update: I said a few weeks ago there had been complications while in ITU due to her illness & medication she was given.

    Her op last night was to do with that. She had circulation problems in hands & feet due to sepsis & the use of noradrenaline causing what is effectivly gangrene. She suffered damage to fingers on her left hand & partal damage to most toes.

    The op was to amputate the 4 fingers from the 2nd knuckle & a small amount of her thumb.

    Love you stell xxx
    Marc x

    A view of Stella's world from her bed on the ward

    A view of Stella's world from her bed on the ward

    Friday 23rd September

    Stella update: she's had another day full of adventure.

    I'm hoping she can dictate a post for me to write tomorrow.

    She's got her hearing aids now which will take time for her ear/brain to get used to so her hearing is very limited today.

    We spoke to her neurologist about stell going to rehab soon.

    Love you Stell
    Marc x

    22nd September 2011

    Stella update: spent most Tuesday on the ward with Stell going through what happened etc.

    It was really nice to spend time with her without machines, lines & nurses coming in to check on her.

    We both know how much further we have to travel before she's ok again but today was just nice simple & uncomplicated.

    She's having her hearing aid fitted tomorrow so that should make life easier by far.

    Love you stell.

    Marc x

    21st September 2011

    Stella update: if they can find her a bed in haematology today she will be leaving critical care.

    I hope she remains in a side room as she is still on the c-diff protocol while her tummy is upset.

    Once she is back on the ward there is the possibility I can spend the night which would be fantastic.

    Further Update 21/09

    Firstly I want to say how well I think Mrs Thorley is coping with things she's amazing!

    Secondly she has been moved back to haematology.

    Thirdly she saw the audiologist & the damage to her hearing appears to be caused by the antibiotics, the damage is permanent & quite severe. 1 ear she can't hear anything really below 80db & the other it's around 95db so...she's having hearing aids made there not the fashionable ones that fit in your ear there the traditional ones because of the level of hearing loss :(

    Love you Stell

    Marc x

    20th September 2011

    Stella update: good news as promised, she had her tracheotomy removed today which means two things.

    1 She's breathing really well now 

    2 She can now talk... & talk is the only thing she did when I visited her!

    She's very confused but I have started helping her piece together everything that's happened over the last 4 weeks.

    Love you stell

    Marc x

    Stella after having her tracheotomy removed

    Stella after having her tracheotomy removed

    Sunday 18th September 2011

    Stella update: shes fully alert today it was beautiful to see her with all her faculties in place & working. Even though she won't see the audiologist until Wednesday I've been told her hearing impairment could be permanent due to the antibiotics. The only thing I have to say on this issue is no matter what is I'll be there for you Stell every single step of the way.

    Love you Stell

    Marc x

    Saturday 17th September 2011

    Stella update: she was very sleepy today, slept through most of my visit.

    She's doing really well on ventilation I'm hoping in the next week the ventilation won't be needed at all. She's getting more fustrated every day, this could be because of her confusion.

    She keeps on smiling no matter how pissed off she is.
     
    I love you stell

    Marc x

    Friday 16th September 2011

    Stella update: today she's living in Stella land which is a smile happy but frustrating place for my girl to be.

    Had a catch-up with the DR she's doing really well but there is a debate about what's worst effected hearing or mental state. I think hearing the DR thinks the other way around. It doesn't make any difference either way.

    She breathed without her ventilator for support for the 1st time today too (just a trial run)

    Love you stell

    Marc x

    Thursday 15th September

    Stella update: She was in good spirits when I saw her yesterday & has had a much settled nights sleep now they have sorted out effective pain relief.

    She still has her temperature & is on her ventilator.

    She's going to be kept busy over the next day or so as there are plans for various specialists to come and see her.

    Love you Stell
    Marc x

    12th September 2011

    Stella update: She is in good spirits today even though I can tell her frustration grows each day with the communication, breathing & body strength issues.

    Her temperature is back upto 39 & rising, she will have bloods cultured again.

    A hearing specialist is visiting her soon so hopefully that will give us answers.

    Love you stell.

    Marc x

    Sunday 11th September 2011

    Stella update: I've just been to see her & even though it was a frustrating visit communicating with each other as it's quite apparent Stell is having trouble with her hearing, I did have a breakthrough by using my iPad as a note pad asking her simple questions & allowing her time to read & take her time to answer with nods & shakes of the head. MS pain is an issue I'm addressing with the doctors.

    She wants to come home & is pissed at the lack of strength in her limbs.

    Marc.

    Stella Smiling

    Stella Smiling

    Saturday 10th September 2011

    Stella update: Her temperature appears to have gone at long last.

    Everyday I see small improvements in Stella which makes me the happiest person in the world but knowing that we have a long but difficult road to travel.

    Thank you for Darren, Charlotte & Tom for making our meal last night as normal as possible.

    Friday 9th September

    Stell update: she was asleep when I called at 10am.

    She still has her temperature & I'm am hopeful of being able to talk to a doctor.

    They were busy last night & I've not spoken to a doctor since Monday.

    Marc x

    Thursday 8th September 2011

    Stella update: she's had a really good day.

    She's been out of bed & in her chair again today through the miracle of the hoist.

    She's been showing off how she can move her legs a little now.

    She still has her temp & the Dr's are confused why so they are pulling out every line possible.
     
    Marc x

    Wednesday 7th September 2011

    Stella update: Positive things only...she's more awake today & has been on a little trip on a hoist from her bed to a chair.

    She's very smiley today it's beautiful to see.

    Marc x

    Stella in bed with Tracheotomy & eyes open

    Stella in bed with Tracheotomy & eyes open


    Stella out of bed in chair 1st time with Mum Sue right & my Dad Alistair left

    Stella out of bed in chair 1st time with Mum Sue right & my Dad Alistair left

    Stella in chair

    Stella in chair

    Tuesday 6th September 2011

    Stella update, she's doing ok as the doctor told me yesterday 2 steps forward 1 step back.

    She's has been running a temp for the last 24hours & at the mo there is little sign of it stopping we're currently at 39.

    They have grown some new bugs recently one is Vancomycin resistant!

    She is back on pain relief sedation to help her so she more sleepy now than she was.

    Further Evening Update

     Stella update. She's been sleepy today but didn't have much of a chance to see her today as they were changing lines to combat her temp that was at last count 39.3.

    It's been frustrating for me as I had to sit in the waiting room for over 2hours with very little info (they didn't tell me she was having lines changed).

    The nurses are being cagey at the mo which frustrates me & there for the reason for the late post...I can't sleep! Lol.

    Marc x

    Monday 5th September 2011

    Stella update while waiting for pizza @ dominos!

    Stell is ok, as the doctor told me critical but stable.

    She is still awake but quite delusional today off in her own little world. She seems very happy but unresponsive to commands from doctors.

    It's still very early days & she's doing really well.

    Marc x

    4th September 2011

    Stella update. She's having a tracheotomy done as I type. I've been over to see her this morning because she was conscious & understandably upset. I had a nice chat with her (obviously fairly 1 sided as Stell was still on her ventilator) after being turned by the nurses she was more settled & sleepy. I'm just waiting for news from the tracheotomy so I can see her.


    Stella update. I've been back to see Stell this evening. The tracheotomy went well & she is off sedation so is fully awake. This is proper good news but the beginning of a long road back good health. She is understandably very upset & confused. I've discovered I'm rubbish at lip reading as I am sure she was in pain & wanted to talk to me but couldn't. I can lip read "I love you" & know the signal for kiss please :)

    Friday 2nd September

    Stella Update.

    Today is the original date for discharge if everything had gone to plan.

    Stell has had her Hickman line removed & a new line put in for her dialysis which she is on now.

    Her temp has come down as a result of being on dialysis it always does, this does mean her temp readings are not truly her real temp.

    The doctors are trying different levels of sedation and ventilation to see how Stell is getting on, so she is semi conscious and moving her eyes, which is fantastic.

    Stella 02/09/11

    Marc x

    1st September 2011

    Proper stella update (been slack the last couple of days)!

    Stell had 24 hours off her dialysis to see how she got on. Once back in dialysis the line clotted off after two hours. It since has been removed & are planning on putting a new line in today as kidneys are still on strike. They have grown a bug which is likely the course of her temp spike over the last few days. She is showing signs of ware & tear which is normal.

    The nursing staff & doctors are amazing like mini Demi Gods!

    Marc

    30th August 2011

    Very late Stella update.

    She's had an ok day, her temp has spiked today for the first time in a few days somewhere between 38.2 & 39.7 for most of the day.

    She went back on dialysis this evening but has come off because her line has given up (which they will replace tomorrow) all in all Stell is steady & stable.

    One last thing thank you Darren for coming over & for listening to me go on about Stell tonight it was very needed.

    Marc x

    29th August

    Stella update.

    She's still stable & the plan is to bring her off sedation sometime this week but it could be a long process. There are other things happening but I'm not ready to share all with the world just yet.

    Thank you everyone for your continued support.

    Marc x

    28th August

    Stella update, she's stable & has come off some of her medications.

    She had her ventilator tube replaced last night as it got all gunked up. The doctor let me look down the camera while investigating any potential part blockage of the tube. I've now seen the entrance to her lungs!

    I'm trying not to get to excited about the improvements because we've had an up & down week.

    Marc x

    27th August

    Sat at hairdressers waiting to have my haircut (obviously) & realising this is the first normal thing I've done in the last 7 days.

    Stella wise, condition is the same as yesterday. I will keep you all posted.

    Marc x

    26th August

    Stella update. Not much to report so far today her condition is the same as last night "very poorly". I've just spoken to the nurse & they are giving her maximum support, with medication, sedation, paralysation & dialysis. Saying that her White cell count is up from yesterday & her blood is slightly less toxic than last night which is good because I don't think it could have been any more toxic if it tried. When I talk to her doctor later I'll squeeze some more positive news out of him.

    Stella Update. Just been told Stell has C-Diff the full blown super bug. They have known since last night but only decided to tell me once I arrived at the hospital to see her. Sorry, rant over :(

    Marc x

    25th August

    Stella update. Stell has had a tough day, she's had a CT scan which upset her breathing & she's back on her dialysis this evening to make her blood less toxic. She's also on more sedation than yesterday. Keys hope the next 24hours will be more settled for her.

    Marc

    24th August

    Stella update. Shes still stable & yesterday came off sedation & dialysis but unfortunately as is common in these situations she's had to go back on to dialysis & sedation. It will take time but things are looking ok.

    Thank you everyone for your wedding anniversary messages it means more to us than words can say.

    Stella on ventilator

    Stella on ventilator

    Stella's PM update. Her condition is the same as it was the last time I posted but I've had a chat with one of the doctors & the have finally identified two different bug in her blood. Her temp spike at 40.7 again today as it did last night & she's still critical with no long term prognosis but it's a step in the right direction that the doctors at least know two of the things there up against.

    Marc.

    22nd August

    I've been trying since 8.30am to get an update on stell & there nothing major to report. She is stable which isn't the most exciting & descriptive description in the world but it's the best news I've herd in the last two days. I'll pass on all the well wishes from everyone, I'm sure she will be happy to hear it even though she's unconscious.

    Stella on ventilator

    Stella on ventilator

    Stella update, just been to see her & she's still stable. I know I'm wanting too much but I would really like it if she woke up sooner rather than later but by the sounds of things she will still be unconscious, sedated & on her ventilator tomorrow for our first wedding aniversary tomorrow. I have written some of your messages sent to me & stell in a card so she can read them when she wakes up.

    Thank you ALL for your continued support.

    Marc x

    21st August

    Stella update, after initially picking up a little yesterday evening she had a rough night & her condition deteriorated to the level where it was decided she needed to be put on a ventilator. Hopefully this will give her body the break it needs so she can wakeup in time for our first wedding anniversary on Tuesday.

    Stella in ITU

    Stella in ITU

    Yet another Stella update, sorry no positive news yet she's deteriorated again since this mornings ventilation she's now on dialysis because her kidneys have decided not to work now. She is on many other devices & things to keep going. I've been told the next 24/48 hours are critical, she's a fighter & I know she will pull through. Sorry there isn't anything positive to say at the mo but as soon as there is I'll let u all know.

    Stella in ITU

    Stella in ITU

    Marc

    20th August

    Stella hasn't had a good night & an even worse morning. The Doctors don't know if she's having a reaction to the ATG or the blood transfusion but it's making her really poorly. There currently running every test under the sun to get to the bottom of it. So on her behalf can I think everyone for all lovely & kind messages of support, it's helping both of us through this difficult time. Thank you everone.

    Stella in ward being assessed by nurses before being moved to ITU

    Stella in ward being assessed by nurses before being moved to ITU

    Quick Stella update she's been moved to ITU, she's very very poorly. Not sure what's causing it yet. Thank you everyone for all your messages of support.

    Marc

    Wed 17th Aug 2011

    Stem cell transplant day! I have hardly slept all night, I don't think there could be much of a problem with my kidneys at the rate that I've been peeing! I have on average been 2 times an hour, sometimes more! I feel really grotty and because I'm hooked up the drip still, I can't shower until this afternoon - eugh, gross!

    Marc made sure that he would be here for my transplant today, I think he knows I'm actually really nervous about it, which is so strange because it's only something that belongs to me anyway, they're my stem cells after all. They're only putting back, what they took out the other week from me! The nurse said that the stem cells will go in at an almost exact time of 24 hours after the Melphalan which I had yesterday at 3pm. Before transplant I was able to get free of the machine and enjoy myself a shower, lush! Marc noticed a rash that had appeared on my back and my head! The Dr came and had a look but she wasn't worried.

    Then it was time! My nurse was with us and she said that the lab tech was just defrosting my cells and that I had 4 bags in total, each with aprox. 2 million per bag and they were going to hold the leftover cells, out of the 12.74 collected, on an if needed basis. The nurse said that to other people I will smell of sweetcorn quite strongly and that it is just a harmless preservative that is added to my cells to keep them nice n fresh. We received the 1st of the bags and got going. My obs were being taken throughout and after a little while I was almost sick, I had a really nasty taste in my mouth, I'm not sure what of but it made me feel really sick. My nurse gestured another nurse who was on hand, to get an anti-sick for me and in it went. Another bag came though, I'm still getting these waves of nausea though! Then another bag came though, still with the nausea! Then finally it was time for my last bag, hurrah! I was really looking forward to my tea this evening but now, not so much! Marc said that I did indeed reek of sweetcorn, nice! A little while after, I got a bit emotional about it all (I am not a rational person when I am this tired) and I got v tearful! I think I was just feeling really overwhelmed by the experience, plus I was exhausted but couldn't unwind.

    Stella having Stem Cell Transfusion

    Stella having her stem cell transfusion

    At about teatime, I became very uncontrollably in pain, my MS pain has NEVER been this bad  before! Why is it so now?! Marc buzzed for the nurse, who later followed with the Dr and I was given some more Tyzanidine and luckily because I hadn't much for tea, they got to work quite quickly! I said to Marc that I think I will be ok now if he wants to get home and get some rest. It really upset him to see me in all of this pain and as soon as he got home, he rang to check how I was doing and I told that I had had a nap and was feeling a lot better physically and emotionally plus it was nearly time for night meds, which we both knew would put me to sleep for the night!

    Tues 16th Aug 2011

    Last day of chemo today - yay! Although, this is supposed to be the worst out of all of the chemo drugs, it's called Melphalan and I have to chuck as many ice poles and ice in my mouth/stomach before, during the 7min injection and for a small amount of time after. Good job I don't suffer with sensitive teeth then! Feel quite sick now!!!

    I find it very strange though that one of the most toxic of these drugs is only a 60ml, 7min injection, you'd think maybe over a slow release of about a week or something! I will now have lots of fluid to be pumped through my drips over the next 24hrs, oh and a water tablet to make me pee lots in to lots of pots! This is so that they can keep a check that my kidneys are functioning well and remedy if they're not! 

    I am also having my rabbit drug test today to check that I am not allergic or anything, this all happened absolutely fine, with no ill effects.

    I saw my haematologist Prof Russell today on his rounds, I explained that my MS pain is getting worse and he said that they would get in touch with my neuro Prof Constantinescu or one of his team to see what they can prescribe for me to help manage pain better. A little while later I had one of my meds (tyzanidine) increased with scope to further increase if necessary, while still being mindful of my liver.

    Marc's sis brought Marc to visit me today, I can see he is really starting to show signs of struggle but Marc insists that he is fine and he is coping. I wish I wasn't putting him through this, I wish I could take more of the strain but I think because of all that is happening with me and all of these drugs, I am not equipped or strong enough to be the that person that he really needs to prop him up throughout all of this. I feel v selfish but Marc says that he isn't struggling because of me and that it isn't my fault and i shouldn't beat myself or feel guilty because it will all be ok in the end and that I'll be so much better off afterwards that I can start to pick up our life together again.

    Mon 15th Aug 2011

    My Mum came to visit me this morning and she arrived with jam/cream donuts, haribo (the happy world of haribo) and some celebrity gossip mags so that we could go through them and bitch about who's lost too much weight or wearing a dodgy outfit or my personal fave is when they are out in public without their face on, prob all sweaty after the gym, yeah! Mwah ha ha ha!

    My taste buds are even worse today but I have noticed that they can taste creamy, sweet flavours! Not choc or sweets really but the jam/cream donuts were very well received! Mouth is also very sore esp the on the gums around my teeth. I spoke to the nurse about this and she said to keep using the oral wash as it will help to numb my mouth a bit. I spoke to her about the next chemo that I have tomorrow and how it will affect me and great news, she said it will start to make me become quite poorly! The nurse also said that said it was good that I have been drinking lots as it saves the mouth but unfortunately this ulcerative soreness will go from mouth to gut to bum! Plus, tomorrow I am being allergy tested for the rabbit drug that starts on Thurs. She also told me that once Fri is over tho that is all of the toxicity finished and it's on the up from there! I asked whether I may get out of hosp sooner than other pt.s because I didn't have a blood disorder like most of the pt.s but she said that it's the drugs that we all receive the same of that causes the I'll effects and we are all still having the same drugs and therefore I will still be in for aprox. Another 2 wks after fri's last dose of rabbit.

    I also mentioned about my MS pain not being controlled too well and she said that the chemo will just home in on any weakness and aggravate it but she said she would speak to the Dr's for me and see if there was anything that could be prescribed or increased to better manage my pain. The Dr's have now prescribed me Nefopam to see if it helps with the pain without masking any temp spikes. Please work, my legs haven't felt this bad in what seems like ages!

    Sun 14th Aug 2011

    Again, today the same chemo/drug regimen but I am noticing that I taste less and less as the day goes on and my mouth is really dry and I've had a couple of ulcers come out so the nurse has given me an oral mouth was to use 4 times a day.

    My MS pain is a lot worse today too, I must catch a nurse or Dr about it, to see if anything can be done or if there are drugs I can increase.

    Marc arrived at about 11am after sorting out our cats and doing washing-up, laundry, etc around the house.  I really look forward to him arriving each day and it breaks my heart when he has to leave but I know he needs to get get his rest, more than I do. He is my everything, my whole world. He is my rock through all of this! When I am tired and weak - he gives me strength. When I feel ill and nauseous - he tries to search for a remedy. When I am hurting and in pain - he tries to soothe me. When I am upset, nervous or frightened he calms and comforts me. I wish I could help him though this though because I know we are both going through all of this together.

    Marc's Mum and Dad kindly came to visit me this afternoon, bringing me some fruit and cookies, etc. Marc's sister had also sent me some DVDs to watch too, which was great cus I'm gonna be in this room for 3 whole weeks. We all had a good catch up on things and spoke of a narrowboat holiday, next year maybe - puke fest no. 2 then with my motion sickness!

    There was a hive of activity out of my window on the cricket field as there was an open day for the Haematology Dept to celebrate 25 yrs since their 1st bone marrow transplant! Prof. Russell (my consultant haematologist) was on the news that night talking about all of the accomplishments made over the years. It looked like they were all enjoying the event!

    Then it came to that time of day again, when Marc has to go home! I get so overwhelmed with sadness, that I am not going with him.

    Sat 13th Aug 2011

    Much of the same to report today again except I've started to notice that my Hickman line is looking a bit snotty (and after that last Hickman line, well, no holding back this time), so I mentioned it to the nurse, who gave it a good clean with some iodine - with me being allergic to chlorhexidine which is in most alcohol wipes, cleansing and anti-microbial washes/cleansers!

    Marc came to me for about 11am. He'd been to pick up some provisions for me like, juice, breakfast brioches, sweets n mints to take the taste of chemo off a bit. Mouth feeling a tiny bit sore and dry so I made sure I got plenty of fluids down me as advised by the nurse.

    Had the same chemo/drug regiment as the day before, felt the odd wave of nausea but thankfully they came as quick as they went. Appetite not brill tho and I can't taste food all that well - my brioches taste bizarre.

    Marc left for home absolutely knackered at about 7ish, he's been running around trying to do everything, trying to please everyone but neglecting himself by doing so! I wish I could help, I wish I could carry some of the weight that it so visible on his shoulders, I wish I wasn't putting him through all of this and it's just the beginning still, it's still a long road to my recovery.

    Fri 12th Aug 2011

    I awoke nice and early 4.30am! 4.30am! I didn't even know that 4.30am existed - I though it was an urban myth! Ha ha. I think it's just me getting used to the different sounds and the light levels, I'm sure it won't take too long to adjust, I really hope.

    I had some bloods and obs taken, a bit of breakfast and my bed was made and then hopped into the shower for a quick scrub and then settled down to watch some mind numbing daytime TV - boring!

    At 9am I was given all of my meds, followed by 10am anti-puke and 1st lot of chemo for the the day which finished just after approx. 1pm and after my lunch of fish, chips n mushy peas, mmmm! Then it's time for lunchtime meds (so pleased, starting to feel these spasms a lot more than is norm when meds are being taken) and obs also taken again.

    Stella having her chemo

    Stella having her chemo

    Marc arrived just before teatime - yay! I'm really missing him so much already! We spent the night chatting about the day, cuddled up and really making the most of our time together before the chemo and transplant  make me too ill.

    I had another bag of chemo that night at 10pm, along with another anti-sick jab and more bloods/obs taken.

    Thurs 11th Aug 2011

    So, today was the day that I would be admitted into hospital to start the next 2 phases (immune system wipeout and stem cell transfusion)! I was told to call the ward at 9am, which I did and the receptionist said she would get hold of a Dr and get someone to call me back. I got a call about 10mins later or so from the nurse saying that they were waiting for results back from the labs to see who was going home today, so they could allocate me a room. She said that someone would call me as soon as a room becomes available for me or if I hadn't received a call by 3.00pm then to give them a call to find out what time a room would be ready because I would defo be admitted today!

    So, we waited and then it was 3pm and we still hadn't heard from anyone. So, I gave the ward a call and was told the room had just been vacated but still needed cleaning and making up for me and they asked if we could arrive in about an hours time.

    So, we arrived at about 4.10pm at the hospital and were taken to my room, which just happened to be the same room that I was in a few weeks ago with the infection in my Hickman line! Strange, but it looked different! I mean it had had a new TV/DVD installed but it wasn't that. I kept asking Marc questions like was that in here last time? or that wasn't there before was it? To which I discovered that apart from the new TV, everything is exactly the same! I guess that also shows how poorly I was the other week!

    I got all settled in and with Marc's help, we put all of my clothes away in the cupboard and toiletries on the shelf, wig on my polystyrene head and mints & dental gum on my bedside cabinet (as my ozzy chum told me these will be a god send - yucky taste with some of chemo + they help with oral hygiene too, thanks Carmel) and my doggy pillow which Marc bought for me, in place on my bed (yes, it is a pillow & a lovely looking, cute doggy too, it is soo comfy and cuddly it's good as both a cuddly bedtime teddy (my Marc replacement while I'm in hosp, although it prob won't complain about my sleep talking) or a nice snuggly pillow. I can't think of a name for him (he's defo a him) tho, if people (who are also on Squiffy's Facebook and see my latest blog update by him or by any other means) wanted to help me name him, that'd be great. Just have a look in the photo of him on my blog and see what name he would suit best! Thanks! (sorry no prizes for the best suggestions, unless you'd like me to send a cardboard loo pot or a paper med pot, I'm guessing not)!

    Stella's New Dog

    Please help Stella name this pesky pooch!

    I had my obs all taken and some more blood too and then I was hooked up to the drip for a saline flush firstly, then I was given an anti-emetic (anti-puke, yes please) and just after this I felt a bit of a strange feeling.......downstairs! It only lasted about 5mins, so didn't think much of it until another nurse asked me later that night, if it had been given neat or diluted? I didn't know and she then explained her reason for asking because she said that even tho it's only a 2ml jab (neat) she said it is better to dilute as there are strange sensations experienced by pt's in the genital/anal region! Yay, I'm not a freak! Well, not as much anyway, hee hee!

    I got hooked up to my chemo shortly after my jab and kissed Marc goodnight. It was only a 2 hour chemo session tonight - get in! Although about an hour and a half into the transfusion I started to feel like I felt when I had the infection the other week, I was really struggling to breath - could only say 4 words before panting for breath, I was also feeling my heart racing like a drum roll and my head was scorching! Please no, not again! I buzzed for the nurse to come to me and when she did I told her how I was feeling and she fetched the machine to take my obs. My BP had raised a bit (prob by me fretting), O2 saturation was fine so I was getting enough O2 but still quite breathless, pulse was only slightly higher and temp again only slightly higher but normal still. The nurse told me that the particular chemo I was having, did make people a bit poorly while the transfusion was happening and hopefully that's what it was but she asked, as i had only a small amount left - could it make it to the end of transfusion and I said that I could and she said if i got worse and couldn't take it anymore then to buzz them. I didn't get any worse and continued to the end (what a trooper), she also said as she unplugged me from machine, that she would take my obs again in an hours time to see if they were normalising again. Which, she did and of which, they were! So pleased it was nothing to worry about!

    Stella's Duncan Goodhew Look with tan line

    Stella's Duncan Goodhew Look With Tan Line

    Goodnight everyone and sweet dreams. x 

    Wed 10th Aug 2011
    Had a rubbish night's sleep, both me and Marc (sorry Marc) as I had been in so much pain (mostly physical but had a nightmare about procedure too which was quite disturbing) plus  with me having these bad dreams I was sweating so much when I woke and it had taken off one of my dressings on my neck so I had wake Marc to change them at aprox. 3.45am! I think I keep going over and over the procedure and also my last Hickman line and how that all panned out! I keep thinking about how ill I was with the last Hickman line and hoping that this time it'll all be different, please everyone, knock on wood or keep your fingers crossed for me!

    Tues 9th Aug 2011

    From the minute I woke up this morning I had a feeling of dread! Today I was having Hickman line no.2 fitted! I know that the process of the Hickman line being fitted and it's not so bad, it's just a feeling of, what if it gets infected like the Hickman line no.1 again! I bet the chances of it happening again must be like lightening striking the same spot twice but I still can't shake this feeling and after googling the chance of lightening striking the same place, and finding out that apparently it happens very often, I feel even worse! Maybe I just chose a bad analogy!

    We also realised today, that what we thought may have been just something that comes and goes, we can now def say it's another relapse - great! Just what I need as I'm about to put my body through hell, although it's a good reminder of why I'm doing this!

    We arrived at the hospital at about 1.15pm, I took a big, deep, breath and told myself to suck it up and stop being a big wuss cus I've even seen loads of people who have Hickman lines and without complication! I just got unlucky, that's all! On reporting to reception at the day case unit, I was soon taken through to have my obs (bp, pulse, O2 sat, temp) taken so that they have a pre-Hickman line result to compare with post-Hickman line. I was also given a surgical gown to put on but I could leave my bottom half clothes on.

    The porter came to fetch me at about 1.45pm and wheeled me at lightening speed toward the X-ray with Marc trotting along at the side. Once there, the nurse came out to greet us to run through the consent to the procedure and ask some questions. Then the Dr who would be doing the procedure came to ask some questions too but more aimed at my previous Hickman line and the infection and scarring and he said they may try to go into the vein using another route poss in the left side of my chest but said he would get the consultant to join him once in theatre. So, off I went, on the walk of doom and into theatre!

    I lay myself on the table, shaking like mad only this time I couldn't blame MS tremor (well, I could but that would be lying and my Mum says you should never tell lies) lol! I remembered something I had forgotten to tell the Dr, it was about the thrombo phlebitis I had recently had in my left arm and he said that in that case they would go in the right side of my chest and poss in the same places as had previously been done! This really frightened me and now I was shaking so much because my nerves were getting the better of me but then a really nice nurse came to chat with me (I think she recognised the sign of a panic taking over me) and I started to calm down a bit and I realised that while I had been chatting, the Dr had prepped me ready for insertion. I was then given a local anaesthetic in my chest and neck area (needle goes in really far - ouch) and then they began.

    At first I just felt a bit of pushing and pulling then it started to really hurt. I told the Dr that I could feel pain and the nice nurse came and held my hand hand which was comforting, then I felt even more pain, it felt like I was being gouged! I started crying at this point and then after I started REALLY crying, the Dr said he would inject some more local anaesthetic which he did. But then I felt him doing something that I thought was him doing some stitches (and 2 seconds later the nurse confirmed I was right), this was really sore, so I told the Dr again and he injected a bit more local and after a few seconds I felt him stitching me again. I was crying through most of the procedure this time and I kept apologising to the Dr's and the other theatre staff for being such a baby! I told them that I'm not normally a mardy person but they said that it may be hurting more because of scar tissue from line no. 1, which did console me a bit. 

    Stella with new Hickman Line inserted

    Stella With New Hickman Line Inserted

    I was so glad when they said I was all done, and as soon as I saw Marc I burst into tears again telling him all about the procedure and how I'd been such a baby but he said that I wasn't being a baby and that I'd been v brave esp when you consider how ill the last Hickman line had made me!

    Close-up of Stella's new Hickman Line

    Close-Up Of Stella's New Hickman Line

    So then it was back to the day case unit for 2 hours of obs before going home, i had found the experience both physically and emotionally very draining!

    TGI Hometime!

    Monday 8th Aug 2011

    We went to the hospital today to consent for stem cells to be transplanted back to me. I didn't see Prof Russell today I saw another consultant who I saw when I was poorly - she's very nice and we ran through all that will be done over the next few weeks. I'm booked in for my Hickman line to be fitted tomorrow afternoon at aprox. 1.30pm - yuck! I was also told that I didn't need to come into hospital on the Wednesday evening as was previously discussed and that I would become an inpatient on Thursday (yay, another night in my own lovely bed) and to give the ward a call at 9am to check when they want me to arrive (ie. When they have a bed for me). I also had 2 lots of blood tests today 1 to check that my iron count is still coming up and the 2nd to check my blood clotting ability. I don't know, with all these blood tests it's a wonder I have any left to give!

    I also received my New Pathways magazine today with me on the front cover (Judy, you could have picked a more flattering photo, lol, although I see what you were doing)! I have 4 pages in this mag and there will also be a part 2 post stem cell transplant and a part 3 after 6 months to see what/if there are any improvements/deterioration! It's kind of weird reading about yourself and seeing photos of yourself looking back at you from the pages! Bizarre!

    Sunday 7th Aug 2011
    We went out for a lovely meal today with Marc's parents and his Aunt and Uncle, the food was lush - I wish the hospital food was this good! I mean, it's not too bad but I like food with lots of flavour esp onions, garlic, chilli and peppers, I'm not sure they use any of these ingredients but I'm told that food will be last thing I'll be wanting for quite a while once the chemo starts. So, I'll just carry on stuffing my face with yummy things until then!

    Sat 6th Aug 2011

    My brother and his girlfriend came to visit today with my nephew, which was brilliant as it may be that last time I see them for a month or so with me going into hospital and being in isolation while they wipe out my immune system.

    My nephew (who is the cutest little boy in the whole world, but hey - I'm biased) was a bit of buggar today though and had defo got his mardy pants on! It was still really good to to see them all and I know Marc and my bro enjoyed themselves playing with my nephews new transformers even if my nephew didn't - boys and toys! I have to say tho the transformers are for age 5+ but both Marc and my bro (who's an engineer and fabricator) were really struggling with transforming from car to robot and vice versa! Age 5+ - I don't think so! Lol.

    I was very tired after they had left though and had to go for a nap as Marc said I was grouchy tired, I don't know what he means, hmm!

    Wed 3rd Aug 2011

    I received the info from Lynne today telling me all about the schedule for treatment, here it is the plan Stan, as follows:-

    Tues 9th Aug - Hickman line being fitted in the afternoon.

    Wed 10th or Thurs 11th Aug - Being admitted to hosp as an inpatient :0(

    Thurs 11th Aug - Carmustine (BCNU) administration

    Fri 12th Aug - Cytarabine at 10.00 & 22.00

    Sat 13th Aug - Cytarabine at 10.00 & 22.00 and Etoposide at 11.00

    Sun 14th Aug - Cytarabine at 10.00 & 22.00 and Etoposide at 11.00

    Mon 15th Aug - Cytarabine at 10.00 & 22.00 and Etoposide at 11.00

    Tues 16th Aug - Melphalan

    Wed 17th Aug - Stem Cell Transplant

    Thurs 18th Aug - rATG Administration

    Fri 19th Aug - rATG Administration

    So, 6 days of 24 hour chemo - yay! I can't wait for that pukefest, all I had before was 1 lot of 24 hour chemo and that made me me rough as hell!

    I was advised by Carmel to have lots of ice poles when rATG is administered to help keep temp down as the side effects are shivering fever.

    The email from Lynne though said that I will be in hosp for aprox. 3wks and when blood counts have recovered I will be released home. She says that I still won't feel too well and may still have nausea, poor appetite and feel extremely tired but it will improve after the first few weeks of being at home. I will be monitored weekly though, for the first 3 months following transplant.

    Sounds fab - can't wait! Can't wait til it's all over that is!

    But I know that it's gonna make my MS sooo much better - no more relapses plus a poss. improvement of present symptoms and that's what it's all about, that's what will make this all worthwhile!

    Tues 2nd Aug 2011

    I've received word today that I will unfortunately (majorly unfortunate) be having a Hickman line fitted again as one of the other Dr's advised that it will be necessary to have one fitted for the transplant, booooooooooooooooooooooooooooooooooooooooooooooooooo!!!!!!!!!!

    I know that the chances of an infection like the one I had is very rare but I'm absolutely gutted that I've got have another one, it's poooooooooooooooooooooooooooooooooooooo!!!!!!!!!!

    Mon 1st Aug 2011

    I had an appt to see Prof Russell today, to discuss the next phase on my treatment. I discovered that I will be having phase 2&3 pertaining to the BEAM Protocol. This will be starting with another appt. Next Monday with Prof so we can do my consent to transplant forms and also check that my iron/hemaglobin count has come up a bit more (9.2 today so heading close to a more normal count of 12.1-15.1). Lynne (nurse) asked if we knew the full procedure of the next 2 phases and we said we weren't too sure, so she said she would send us an email and she would also include the dates for all of my different appt's/treatments.

    I was told though that it will involve 6 days of chemo to shut down my immune system, I was told that they will try to keep on top of the anti-sickness drugs but I will still feel quite unwell during this time. Following the 6 days of chemo, I will have my stem cells transplanted to me. Then finally, the day after stem cell transplant I will be given a rabbit drug?! This is a T-cell suppressant, this is done, just in case there was a rebel T-cell (this would be one the little buggers that cause all the trouble with MS - die T-cell die!) in my bag of stem cells transplanted. So by suppressing these cells, it means that when they rebuild again, there is no dodgy goings on afterward! Because this drug is made of rabbits, does it mean I will become a carrot junkie, having to settle for a cabbage or some Brussels   for a fix when the greengrocer/dealer has a carrot drought, lmao! :-D Sorry, I had a silly moment there!

    Prof Russell said he would try to find out if we could do the next phase using a PICC (peripherally inserted central catheter) line instead of a Hickman line (yay, you're my hero prof) due to my bad experience of it previously! I'm so relieved by that cus I was dreading having that nasty bacteria harvester inside me again and there is less risk of infection with a PICC! Although, the PICC line is sort of similar to a Hickman line, the main difference is that it's inserted into a vein in the arm and it is then fed along the vein in the arm to the jugular vein in the chest and it then takes the same course along the vein and into the superior vena cava in the heart - check me out sounding all clever-like (Wikipedia, lol)!

    Later, when I told Carmel and Scott (Carmel is friend from oz who's also had AHSCT too) that I was having the BEAM protocol with the r-ATG (r for rabbit), they told me that's what Carmel had had done too, with really remarkable improvements! They told me that in Brazil they use h-ATG which is made from horse and is more toxic than the rabbit, so it's good that I'm getting that with all of the other toxicity going on!

    Fri 29th July 2011

    I was awake for most of last night, with a pain in my upper arm that I've had for a couple of weeks now but last night was agonising! When I first felt it, it felt like a bruise but there was no bruise visible and after a few days it went so I figured it was ok. Then the pain came back but a bit further along the vein line and I did think that it may be a wee clot but arm ones are nothing to worry about too much and I was taking antibiotics so it can't be infected and pain was still no worse than a bruised feeling.

    Then last night I awoke to feel it throbbing with pain right along the vein too, the vein inside my forearm which had had a cannula in to transfuse my blood back to me after stem cells taken, the pain was right along vein from cannula sight right inside my arm up to my near my underarm.

    So, at about 5am I awoke Marc and told him as pain was getting really bad by then and we called the hospital bleep number and I spoke to a nurse and explained everything and she said she would track down a Dr and ask what the next step was. She called me back and asked if I could make to the day case unit for 9am, I said I could and she said she would handover to the team that I would be coming in.

    Got to the hosp for 9am and waited until the Dr's had finished their ward rounds before I could be seen, while I where waiting I saw my haematologist, who asked if I was there to see him. I told him no and explained to him and he said "you really aren't getting a good ride with all this" and then he said he would go and have a chat with the registrar that I would be seeing so he could also explain the story so far.

    When I was called in by registrar he had a poke and prod at the vein/area in question and he said that as I was still on the antibiotic and there was no risk of infection, he said that I have a superficial thrombophlebitis and he felt the best thing to do in this case would be to give the vein a bit of tlc - some warm or cold (whichever felt best) compresses, elevation when possible, take ibuprofen and/or paracetamol and if there are any clots hopefully, they will dissipate. So, off we went again and like the good girl that I am (well, that and the fact it was fricking painful) - I followed his advice!

    Thurs 28th July 2011

    I have been contacted today by a lovely chap down in Oz today, whose wife has had the same stem cell therapy as I am having under the BEAM protocol.

    His wife had been in a wheelchair for 2 years prior to treatment and all of this rapid decline was while they were still trying to adjust to becoming first time parents of their beautiful little girl, which I know (not first hand) is a stressful and worrying time for all new Mum's and Dad's. They even had to move to another part of the country during this time but it was a good job they did because one night when they were sitting watching the news on tv a story about a boy called Ben Leahy - who had MS came on. Ben was being treated with a stem cell transplant to reboot his immune system and it was happening in the very same city they were now living in - talk about fate or destiny!

    But since she has had the transplant she has gone from strength to strength. She is walking again (with some residual effect as transplant does not reverse damage already done by MS), she has her drivers license back and is very much enjoying being a mum to a (now) 3 yr old daughter.

    She is also actively involved in trying to "pay it forward", to make more haematologist's and neurologist's get on board with this remarkable treatment. She also helps people with the raising of funds for this treatment.

    They are both a remarkable couple with whom I hold great esteem for and I feel very privileged to have made their acquaintance/friendship because they have both been very inspirational to both Marc and I.

    Wed 27th July

    MSRC ONLINE NEWSLETTER - I am sat in my back garden just having a quick browse on my iPad at the new newsletter and there was a piece about another supportive and inspirational website for Ladies With Lesions.

    http://www.ladieswithlesions.co.uk

    So I pretty much just sat and had a good read of that for the afternoon.

    I think that we have some pretty, damn, amazing people sharing this disease and I think that the amount of crap we have to put up with, just from our MS, would make lots of people spend the rest of their lives in constant fear, self pitying and slunk into a deep duvet of depression. But, and I'm not saying we don't all go through that phase at some time or another but, for the most part, we just get on with it! Life goes on and we can't let this bloody thing take over our lives.

    Yes, we do need to accept, it will always be a part of our lives and it will, much like teenagers parties, come along and gatecrash on occasion but also like at teenagers parties - gatecrashers are to be expected and half of the time if you try not to let the gatecrashers get the better of you, they will get bored and bugger off again! I've just read back all of this and think I might swap my metaphorical hat for a nice sun hat instead, I think the heat may have gone to my head maybe! Lol.

    Tues 26th July 2011

    Woke up with Marc this morning as he left for work for the day. I watched a little TV in bed while I texted my mum cus she said she's coming over to see me today but hadn't said the time and then I dozed off back to sleep for another hour.

    Woke up then and got busy with it and cleaned some of bathroom, folded and put laundry away, put the cutlery and crockery away in the cupboards from the drainer. Then I had a shower and got dressed, I didn't put any slap (make up) on cus it's so muggy and humid it'd just melt off again.

    Mum arrived at 12.45pm and we went to my local shopping centre for some lunch at our award winning (voted britain's best chippy) chippy, it was well nice and I think I could eat mushy peas with mint sauce with every meal, although I prob wouldn't have many visitors, lol!

    After, we had a little mooch around the shops and mum treated us both to a new top each and mine looks really lovely with my new blonde wig, I'll have to add a piccie of me in it. Although, I might put some slap on before a photo cus mum said today that I look really pale but the prof said yesterday that I'm quite anaemic - so that explains that!

    When we got back to my house, I was really tired and badly in need of a sleep but I still had dinner to make, there was some cleaning to do and Marc would be home very soon plus it wouldn't have been very nice to Mum if I'd have gone to sleep or started cleaning or even worse asked for help cleaning! I'm one of those people who never asks for help no matter how much I need it, even with Marc I'm still often very backward at asking for help but I think it's gonna get to the time very soon that I'm going to have to ask for help from family because Marc and I both went to bed absolutely knackered and poor Marc had been at work all day before coming home and working again on the house cleaning and he cooked cottage pie all by himself too and it was really yummy (& I only answered one or two questions)!

    I'm so proud of my lovely hubby, he has so much on his plate right now because he does the majority of the housework, laundry, cooking, etc plus he is working full time and he still has all of the struggles emotionally to deal with of my being ill the other week, all of the other treatment stuff to worry about and before all this he's had my ms to battle with too. Everything that I go through, he goes through it too and he sees beyond the smile saying that I'm fine to everyone else and he sees right into my soul to see the pain and anguish that I keep hidden from others and he still manages to support us both emotionally too. I really admire him, he's an amazing person and I know that I'm not the only person with an amazing person in life because behind every person who has MS, there is an amazing person helping them to hold it all together!

    To all these people I say a massive thank you and would like you all to know how appreciated you are.

    Stella looking much better

    Stella looking much better

    Mon 25th July 2011

    Woke up this morning and leisurely got ready for my appt this morning at 11.10, when Marc started panicking as he said the appt. wasn't at 11.10 as we'd thought it was actually at 10.10 and it was 9.45 now and there was the drive from Derby to Notts too! Marc called the hosp to tell them of our error and said we would prob be aprox 20-30 mins late and he asked if we could still be seen, they said yes and off we raced! We knew also there were some roadworks on our usual route but Marc said he knew of another route which we took and arrived only 10mins late - impressive!

    I checked in and went to get a ticket for the phlebotomist, I was a bit worried that they might struggle with my veins after all of the trauma to them the other week but he managed just fine. We went to sit near my consultants room and he came out to go to the room next door and called me in. One of the clinical dr's who looked after me while I was in hospital - poorly, came in too from next door room and we set off with the appt. Firstly, they discussed the bacteria (strep b) that had infected the Hickman line and me and how, I told them that about feeling ill and the temp's of last night and it was discussed that there wasn't a rush to get the transplant done but they had hoped to put another Hickman line in again this week as it is needed for the transplant (noooooooo!) but as I had fallen ill last night they thought it better to have more antibiotics and they asked if I could provide a sample of my phlegm (cringe) for them too and I am then to go back to see Prof Russell next mon to see how I am then and hopefully discuss some dates for things to happen with my transplant!

    Sun 24th July 2011

    I've had a fab day, we finally got to see Transformers 3, we've been wanting to see it since before it even came onto the big screen but because of me and my mankiness we hadn't been to see it, not even Marc, bless him, he said it's cus it's not fair that he go without me and even more unfair that I'm too I'll to go. But today we went and the film was brill, not to some people's taste but we really like these films cus it's nice to watch a easy to watch, not thought provoking and a light entertainment film. Most impressive I didn't fall asleep once (I almost always fall asleep even with good films - well annoying)!

    After for a treat we went to Burger King and I thought I would try the summer hot whopper as it had jalapeño's on it and I am quite partial to them but OMG, HOT! I immediately took them straight out for Marc as he has an asbestos gob but even he said that they were hot! Stick to what you know next time Stella,

    That afternoon I had a sleep and when I awoke I felt a bit poorly but I thought it just being a bit groggy after my sleep. But as afternoon turned to night I started to feel worse almost fluey, aching all over, breathing was getting worse - coughing loads and started to get all snotty! I went up to bed at about 6.45 and Marc checked my temp, it was 38.8 - fever! Marc then got me some paracetamol and ibuprofen, then checked my temp after 30 mins - 38 and then an hour later - 37.7. I'm at the hospital tomorrow to see Prof Russell to discuss the next phase of therapy, don't think that'll be this week at this rate!

    Sat 23rd July 2011

    I've finished the last of my antibiotics this morning, although I still find breathing quite difficult whenever I do anything other than sit or lie down. I'm sure it's probably just going to take time to get over this thing, it isn't like it was just a common cold so I just have to be patient and have faith that I will return to good health again.

    I managed it with Marc to our local shopping centre for a few bits of groceries that we needed and in the afternoon I enjoyed the sun in the garden while Marc mowed the lawn and we both did a bit of weeding and pruning in the garden - it's amazing how quick weeds grow but things that you actually want to grow, like nice pretty flowers, take forever! I really enjoyed it tho but had to go for a nap after cus it really wore me out. I can't believe how tired I get when I do the even the smallest of tasks!

    Fri 22nd July 2011

    Special K for breakie again as it is very iron rich, I'm obsessed with Special K and jacket spuds at the mo because of the iron content and my being a tad anaemic. I will do my best to try and give my blood a helping hand.

    I didn't do much today as I felt really very tired and I actually spent most of the day sleeping. I actually gave Marc quite a fright cus when I woke he had text me 4 times and called 3 before I awoke and reassured him that yes, I was indeed, very much ALIVE! Bless him. I put Shutter Island on the DVD this afternoon and probably watched about 15-20 mins before falling asleep and the next thing I knew was Marc waking me when he got home from work, what a lazy mare I am today!

    Thursday 21st July

    My new wig that I got today with my nhs voucher available to all who have any hair loss treatments

    Stella's New Off-The-Peg Wig

    Stella's New Off-The-Peg Wig

    Tues 19th July 2011

    I've booked an appt for the wig shop today, appt on Thurs at 11am and Marc's sister Hannah is going to take me. I have a wig already but it was an "off the rack" wig compared to this which will be custom made to fit.

    Stella's Off The Peg Wig 

    Stella's Off The Peg Wig

    I have my stubble coming out at a rapid rate now (very glad we clipped it when we did) and the majority of my head is now bald! I have some lovely scarves and bandanas but it feels so much more comfortable and nicer - au naturel!

    Stella's Bandana

    Stella's Bandana

    Some of our friends and Marc say I look like Sigourney Weaver in Aliens and our friend Holly said I look like Demi Moore as GI Jane! But judge for your self with the photo!

    Stella's Demi Moore Look

    Stella's Demi Moore Look

    I've been practising my breathing exercises today loads (I'm sounding like I'm in one of those antenatal classes minus the bump tho) and towards teatime I was finding the stairs a little easier, where before I almost collapsed at the top - I now find I have a few more steps in me, before I almost collapse!

    I'm sure that the Dr is right that I will get my breathing back to normal again but it's being such a long process and I'm v impatient and I want to be 100% again NOW!

    Mon 18th July 2011

    When we got to the hosp, the waiting area was really busy so we thought we might have to wait ages but it wasn't too long before my name was called and I was taken through and had my obs taken which were all fine which was great and my blood was taken for examination before I would see the Dr.

    When the Dr came he said that I had got an abscess but he said it looked like the blister was ready to pop very soon and he told us to then keep it clean and he got us loads of dressings for it too. He said we had done the right thing in coming though especially after the trauma of last week, he asked how I was getting on at home and I told him that I was struggling to get around and really struggling with the stairs but he said to take it all slowly and asked if anyone was able to be with me for next 24 hours (Marc said yes he would) as he wanted my temperature monitoring and with any spikes to take me back to hosp, he also said he had some breathing exercises, etc for me to do and hopefully it will start to improve my breathing very soon.

    Sun 17th July 2011

    Oh, it's just lovely being at home again! My own lovely home, with my lovely hubby and my lovely 2 cats. It's hard getting about with it being 3 storey and my breathing being so bad but as long as I take it slow and have stops when I need them, I can manage ok!

    My Mum brought my nephew to see us which was really lovely, so we took him to his fave eatery - Mcdonalds for a happy meal at lunch and then to ToysRus to buy him a transformer of which he chose Bumble Bee and Marc, (yes, Marc!) Came away with Megatron and Optimus Prime, under the caption that "they can be at our house for when Terrell comes over," yeah right!

    After ToysRus we came home and I had to go to bed because I had worn myself out and didn't wake until Mum and Terrell came up to kiss me goodbye at about 7pm!

    Marc and I discussed phoning the hosp as my neck wound from the Hickman line looked like it was developing an abscess or cyst or something, so Marc called them and they said to bring me in to the hosp tomorrow morning.

    Sat 16th July 2011

    I woke up mega early this morning, I'm soooo excited! Just a few more hours and then I'd be going home! The nurse came in to do my obs and I asked her about physio for my breathing as I live in a 3 storey house and still struggling to breath properly (breathing very shallow) and she said she would talk to the day staff to see if the physio could come and see me before I went home.

    The day shift arrived and the Dr came to see me before doing my discharge form, she said that unfortunately the physio wasn't in today but to keep taking deep breaths and holding them in for 3 seconds. She said that I would be taking home with me some antibiotics in tablet form because as she said the IV antibiotics should have cleared up the Strep B by now because Strep B doesn't like penicillin because it kills Strep B! But I was given more to take home to make sure that everything has cleared up and all is tickety boo again! I was given an appt. for a week on Monday so that we can discuss when I come in for the next stage of treatment but I was told that they would want me back up to top form again first!

    10am - Marc arrived and I was allowed to go home, I was told to eat a lot of iron rich foods as the collection of the stem cells had left me (only slightly) anaemic and off we went - home!

    Marc's Mum and Dad went and did a grocery shop for us which we super appreciated, as the cupboards, fridge, freezer, etc were empty, plus with Marc's Mum being a midwife she knew loads of iron rich foods and to have vitamin C with it otherwise you don't absorb the iron (who knew that, not I)! Also, did you know that there is nearly double the iron content in a jacket spud (which I love) compared to spinach (which I hate)!

    Fri 15th July 2011

    I awoke this morning feeling so much better, I think I'm going ask later (when the Dr's do their rounds), if I can go home tomorrow! I really want to go home now, back to my creature comforts (esp my bed) and to my husband and our cats but obviously, only if I am deemed well enough to go home!

    Maxine and Angie came up to tell me that they had harvested 12.74 million stem cells, wow! It does mean tho' that Marc is the winner then and he is prob, really gonna gloat too, I bet!

    This afternoon I had an echo of my heart, which is a bit like an ultrasound of the heart. I heard lots of murmuring about this is normal and that is normal, which sounded quite good.

    The Dr's also came to see me that afternoon, they asked me how I would feel about going home tomorrow! I said that was the best news ever, me n Marc were made up! Yay, I'm finally going home!

    Thurs 14th July 2011

    I had my 1st big chunk of hair come out this morning, quick phone Marc before he goes to work cus he needs to bring clippers with him!

    Stella's First Clump Of Hair

    Stella's First Clump Of Hair

    Today is stem cell collection day, as this is the 1st day this week that I have been well enough. I was taken down to the room where they do the stem cell collections where I saw Angie and Maxine, who are the lovely nurses who would be doing this procedure. As I had had my Hickman line removed I had a special metal needle in my right arm, which was wide enough for the stem cells to pass through but because it was metal I had to keep my arm dead straight because if I bent my arm it would pierce though the vein and then become useless!

    In my other arm I had a normal cannula to allow red blood cells, White cells, etc back into my circulation again. I would then be on this machine like this for approx.  5 hours, so I sat back and got myself comfy.

    Stella Having Her Stem Cells Harvested

    Stella Having Her Stem Cells Harvested

    Marc had been in to work that morning and he said that all of our colleagues had been asking after me and sending their best wishes to me which was really lovely of them.

    I had really bad heartburn today, I think it may be due to lack of appetite and therefore not eating much but my egg Mayo sandwich seemed to calm it down a bit. I had had a milky breakfast that morning as advised because the anti-coagulant to stop my blood from clotting throughout the procedure, fools the brain into thinking that I have a calcium deficiency and makes face become very tingly, apparently. I didn't suffer this which surprised me because I think I've about experienced everything else this week!

    Over the 5 hours I watched my stem cells collected and thought, ironically, that they looked a lot like the tomato soup that was on the menu for that nights supper - not for me, thanks!

    Stella's Stem Cells

    Stella's Stem Cells

    Maxine and Angie kept looking at them saying that they were a good batch and that there were going be loads. So we held a gentlemans bet to the amount of stem cells collected. As Marc and I had no idea of how much roughly there would be, we were told that 2 million was a minimum standard and gold standard was usually about 5 million. So here are our bets:-

    Angie - 9.84
    Maxine - 11.5
    Marc - 13.3
    Me - 10.56

    Angie and Max said they would come and let me know the figure in the morning.

    Marc hacked at my hair with scissors (Sweeney Todd would be impressed) took my hair off with the clippers tonight.

    Marc Cutting Stella's Hair Off

    Marc Cutting Stella's Hair Off

    I have, no wait, had, so much hair. I had shoulder length hair I now have a No. 1 all over.

    Stella's No.1

    Stella's No.1

    I thought it would be a bit cooler though, I had really looked forward to that but no, I feel hotter than ever but that could be this manky bacteria causing that!

    Wed 13th July 2011

    I had a much better night last night compared to Monday night, this is due to having Marc stay with me. Marc, however, had prob the worst nights sleep ever what with me warbling on all night - I don't mind I was asleep.

    I was told today, we had found out that the bacteria making me so ill is called Streptococcus B (strep b), usually found in babies and mostly harmless to adults except for those who are immune-compromised and in those instances it is fatal. Despite having IV antibiotics around the clock, I was still very ill and still not responding to any treatment. The Dr at this point decided that, as much as the Hickman line is needed, it needed to come out - NOW! I was given the option to be sedated but I chose not to and the Dr went on to pull out the Hickman line (which wasn't too difficult as it had only been in for 13 days), it didn't hurt in the slightest and I felt a sense of relief after it had gone but couldn't understand exactly why!

    A nurse from the intensive care unit came to see me a few hours later to assess whether I needed to go into ICU but I was improving already (I'd made it to the en-suite bathroom and back without almost collapsing - huge accomplishment). The nurse told me that she had advised them to take out Hickman line as it was the most likely cause of the infection and now with it removed, I was finally, responding to the antibiotics! 13 is still my lucky number then!

    I also had chest Xray, which found that there was fluid in my right lung and the Dr gave me a furosemide tablet to get rid of fluid, he said it would mean that my breathing may improve, also I had tree trunk legs (they had almost doubled in size), which it would really help too.

    I didn't realise until much later that normally furosemide is usually given in the day as it is a water tablet and with all of the IV fluids I've been having, well let's just say very little sleep but lots of peeing!

    Tues 12th July 2011

    I awoke this morning at 5.30am, having only got to sleep after 2am obs!

    Still feeling dreadful, I have a commode in my room now and the reasons are 2-fold. 1. They can monitor the amount and quality of my urine (my kidneys had also started to fail now too) and 2. I can't walk the 3 metres to the en-suite bathroom, due to getting so breathless (my oxygen is fixed to the wall and not mobile) and my heart was also really struggling and started to hurt even more when I tried to walk.

    We still aren't too sure what bacteria we're dealing with but I am on an anti-biotic drip and  saline drip (to keep hydration up as my kidneys are starting to suffer too).

    The drugs, infection and fever were making me talk (more like shout) in my sleep and when awake I was hallucinating all kinds of things, some actually very frightening.

    When the nurse came to do my obs, I asked her if I was going to die, she said no but I (in the state I was in) thought she was joking! She did say that it may help me if my husband stayed over with me the next night so that he could reassure me and help me to deal with all of this, she said she would speak to the dr's about this and check it was ok. The Dr's agreed that it would be in my best interest.

    Mon 11th July 2011

    I awoke at 2am this morning with really bad pain in my chest and it was making breathing a bit difficult too. I kept trying to get more sleep because today is a big day as I'm hopefully getting the harvest of my stem cells, either today if there are enough or Tues or Wed but once they have enough the harvest is finished! If only I could get some sleep but these pains and breathing are getting worse, time to wake Marc I think.

    Marc helped me to the toilet and I nearly fainted, everywhere was spinning, heart was pounding (felt like it was going so fast) and I had pins and needles in my fingers (more, no!). Marc asked me give my pain a number between 1&10 as to how bad the pain was (something we always do to work out how pain affects us) and I said it was a 10 minimum, at which point he said lets call the haemotology dept to see what they say, but we kept calling the numbers given to us and they were either engaged or rang and rang until after a while Marc said "Right, I'm calling 999!" Marc knows that for my high pain threshold, a 10 means I must be in serious trouble!

    When the paramedic arrived, I told her all about what I was feeling and about all everything that had happened this far with my HSCT. She did my obs - blood pressure - 190/125 (super high for me, I'm usually about 90/50 tops),temp - 38.6C, O2 stats - 85% and heart (pulse) rate - 188/minute (usually 75 tops) so she took me to my local A&E and as I was the first of the morning, I was checked briefly and I had my obs done again and I was then taken through to the resuscitation room to be observed. Once there, I did all of same explanations as I had done previously and they had a look at Hickman line and said that there was a bit of ooze there and they asked if I had had it swabbed and I said yes, last Friday and that I was having the treatment all done at City Hosp, Notts and that I had an appt. that morning for harvesting of my stem cells which would need cancelling and they said they were going to call them to ask if they had the swab results.

    They took my bloods too and a while later a haematologist came to see me, as he said he works at Notts City Hosp with my consultant sometimes. He said that they were just trying to sort out a bed for me at Notts City hosp, so that I may be transferred there, meanwhile, he said, he would get some bloods taken and some cultures taken too, so that they may start the process of finding out what type of bacteria was causing the infection as it would take 24 hours for the cultures to grow. After a while I was taken to the medical assessment unit until the ambulance arrived to take me to Notts City hosp for treatment and care. Please make me better soon, I've never ever felt this ill!

    Stella In A&E

    Stella in A & E

    Sun 10th July 2011

    I awoke in pretty much the same state as yesterday but worse the bone aches from the jab last night are really very painful today! God, I'm turning into such whinger ninja! Thankfully, once I had taken meds Inc. PnI and given them about 45 mins to get working again, I felt ok again. I went downstairs and my nephew was watching something on cbeebies with his mummy. My brother was still in bed the lazy bum until 11.00 ish, never changes! They had to get going soon after he got up because had to be in Leicester by 12.30pm so Marc and I had big cuddles and kisses from my nephew, followed by a hug from his mum and then my brother hugged me and told me he loved me and would try to come over again soon.

    We had a quiet and relaxing Sunday for the rest of the day which I think was just what we both needed.

    Injection has given me loads more pain in my bones tonight, busy little bone marrow, getting my blood and stem cells ready for tomorrow's harvest hopefully but ooouucchh, it bloody hurts (no pun intended)! Back to the hosp tomorrow morning to test my blood again and to see if I have enough of my stem cells in my blood for the harvest and after tonight's jab, I really hope so!

    Sat 9th July 2011

    Nooooooo! I've woke up this morning feeling proper rough! My throat and mouth are so sore! Everything is aching, I'm burning up and I don't feel like I have an ounce of energy! So, I  took my usual meds with some paracetamol and ibuprofen added to them and took temp, it was 38.6 Celsius. I stayed in bed with the fan on me and took temp again an hour later as I was starting to feel much better, my temp had returned to a nomal 37.6 C, phew! Anyway the rest of the day I kept taking the "P n I" throughout the day to keep temp down.

    I bought some clean n clear spot cleansing wipes today, as I've noticed that my skin is v oily and needs cleansing about 6 times a day since having chemo! My hair too, I can wash it at night time and come the morning it's greasy again! I assume this is from the chemo because before chemo I had dry skin and normal/dry hair, my hair only needed wash every other day and that was because I like it to smell nice. But I feel like a right chip shop chick!

    When my brother arrived my nephew came running up to me with a pink and White teddy bear and he said "this is to help make you feel better Aunty Stell" and there was also a cerise orchid plant for me too (very pretty), which was just lovely of them all. My nephew has named my teddy Pinky! We had a really fab time today but time for bed now I think, sweet dreams.

    Fri 8th July 2011
    I went the hospital today to have a check on my blood again so that they can monitor me and make a decision about whether I would need a blood transfusion. My haemoglobin's are fine but white blood cell count is 1.2 which they were quite worried about as it is very low but they said to be very careful and to keep a check on body temperature, productive coughs, colds, sore throats etc which we said that we would and as my Brother, his girlfriend and my 3 yr old nephew were coming to visit on Saturday, I gave him a call to check that they weren't germy! They're not, which really pleased me because I was really looking forward to seeing them as they live in Leicester and we can't see each other all the time.

    Thurs 7th July 2011

    I went to the town today with my sister-in-law, to swap my wig for another as the one that I bought is very long and therefor very hot, I hadn't taken that into account when choosing a wig but one of my friends who is also having chemo (but sadly for cancer) has found that (now that her hair has gone) even her short wig is too hot and is finding herself wearing her bandanas instead.

    Thankfully, the man at the wig shop was understanding and knew that I hadn't been wearing the wig (as my hair still hasn't even started to fall out, yet) so he let me swap it for a cute little chin length, chocolate coloured, bob (hairstyle, that is)! While in town I thought I would treat myself to a new Pandora charm for my bracelet, I ended up buying 2 (oops, I don't know how that happened!) really lovely charms, one is a cat and the other a minty green, stripy, murano glass bead. Just lovely!

    I was feeling really happy apart from one thing, that was still niggling me but I don't want to dwell on it if I can help it any longer. Some of you may have seen that I received some negative comments on Facebook via MSRC posts, the day before. But today, I have received lots of positive, encouraging and supportive comments from some lovely, kind hearted people and I just want those people to know I really do appreciate the things that you have said and it has helped me to feel so much more positive and I also feel I should forget all about it and try to move on now.

    Wed 6th July 2011

    My mum came over today with my 3 yr old nephew, we had a lovely day together and my nephew is just the funniest and cutest kid ever! We went out for a pub lunch and he was just so charming he had virtually the whole pub as putty in his hands the little bug bug! Marc went to work today as he felt a lot more confident about leaving me because mum was coming, as I'd been suffering with a bit of a tight chest and very drained at time but it seems as though it has settled down a bit now.

    1st injection at home today! Marc mixed the solution etc. for me and then put the other needle on (cus you have one needle - big fat one, which is for adding water to the powder and drawing up into syringe), only to discover we'd used the wrong needle for drawing up so we had to tip the other out of sharps bin to use for injecting cus the other is long and fat!

    Tues 5th July 2011

    We went to the haematology day case unit today for a check on my Hickman line, bloods and injection training as I am to start injecting the Granulocyte colony stimulating factor (GCSF) today for the next week.

    So, bloods taken and Hickman line got redressed - chest tightness hasn't bothered me at all today so think body has gotten used to the line now, I'm feeling a bit apprehensive about these injections though. Not because I have to inject because it's only a little sub-cut injection in my tummy. No, it's because apparently it makes the bones quite painful after the injections due to the bone marrow working hard in the production of more stem cells.

    The nurse showed us how to mix and draw up the GCSF into the syringe (a job for Marc I think, way too fiddly for my Richter scale 7 tremor) and then she told me to hold an inch on my tummy and inject myself using a dart like motion, so I did it. Jab wasn't painful just as I'd expected having done intramuscular Avonex injections (much more painful jab) in the past, then that was us all finished. After I'd inquired about hair loss (although not noticed anymore than the odd strand so far), she went off to fetch my wig/hair replacement voucher and then we could go. As we were walking back to the car I noticed that my upper arm and collar bone were already starting to ache so on getting back to our car I took 2 paracetamol. On the drive home (Marc driving) I noticed that my legs had joined in the pain party too but by the time we'd arrived at home I could hardly notice any bone pain and still can't feel hardly any pain now (8.30am on Wed). Whether the pain increases after carrying out more injections I am yet to find out, so watch this space.....

    Also, I was v nearly sick at bedtime tonight, think I prob ate too much for my stomach's disposition at the minute but my dinner was really yum however I won't be filling myself to bursting like that again - lesson learned!

    Mon 4th July 2011

    Not much to report really today but much of the same. I am doing really well sometimes but then at others I am really rough and still get these (at times v strong) waves of nausea!

    I keep getting tight chested too which is really bothering me but I think it may be that I'm still getting used to having the Hickman line in. So, I will be monitoring over the next 24 hours to report to clinic tomorrow the frequency.

    Also, temperature remains normal, so not an infection causing it which is really good.

    Sunday 3rd July 2011

    Woke this morning at aprox 3.30am with aches (not like my ms pain more like a flu-type pain) and my head hurt. Scalp feels quite sore too, I've heard that scalp can feel sore just before and during hair falling out. Marc bless him went and fetched some paracetamol and ibruprofen for me and I went back to sleep until 8am when I awoke with nausea but can't take meds until 9am as I will be out of sync with every 12 hours, still it's only 1 hour! Chest and neck really quite painful from the tubes. What a moaning Minnie I am on this lovely sunny day!

    Having a fab day doing nothing feeling a bit queezy and majorly drained but like marc said considering I've had a 24hr straight chemo session, I'm doing quite well! Long may I shall, fingers, legs, toes, eyes, etc crossed!!! I'm a real wuss when it comes to feeling or being sick!

    Saturday 2nd July 2011

    Had a lovely day at home, got some films and munchies from the shops. Marc bought me a lovely bouquet with sunflowers in, bless him and we had fish, chips n mushy peas washed down with a dandelion and burdock pop from the chip shop and it was really yummy.

    Treatment wise nothing much to report today as I had no nausea (yay) today, just felt a bit drained. Oh, and these tubes in my veins are quite sore and make me feel a but tight chested at times.

    Friday 1st July 2011

    5.45am
    Good morning world, it's a lovely sunny day! I made it through the night without puking and 1 wave of nausea (that could just be stress of yest tho)! I'm doing good! 1bag if chemo down and 2 to go before I'm allowed to go home which all being well might be after eight (always liked those chocs) tonight! Woo hoo!

    11.15am
    Stell feels poorly sick and hopes anti-sick and steroids work soon! :0(

    11.20am
    Feel a bit better now, apparently I was due a little while ago for the drugs but as I'd said I was fine not long before to the student she had attended to someone else but was really sorry about it being late coming, bless her.

    11.22am
    Been a little bit sick but not the pukefest I thought was coming!

    11.46am
    I feel much better now I am v pleased to say! Still gonna skip lunch tho I think. I think the battered fish, chips n mushy peas I ordered earlier may lay on my stomach quite heavily. I was looking forward to eating this earlier! :0(

    1pm
    Feel nasty after trying to eat something, I wish I hadn't now but I've called the nurse to let them know.

    1.20pm
    I've just had a lorazepam under Tongue dissolvable tablet, I really hope this works!

    2.10pm
    Now I've been really sick, when will it end. I don't think I can handle much more, :'( called the nurse who said the next option is to try a sub cut injection which should be more effective.

    2.30pm
    Jab done now, please work - I've never felt this sick ever before!

    3.45pm
    Just given my order for dinner, cheese slice with mash n veg. No soup or pudding!

    5.30pm
    Just woke after a little nap and feel ok, I think. The nurse said that the dr had said unless improvement soon it'll mean another night stay in hospital - noooooo!

    5.40pm
    Tea has arrived and I've managed to eat 1.5 scoops of mashed potato and then the nurse came in and said I looked a lot better and said it was good to see me eating too, maybe I will get to go home afterall! Everything crossed.$

    6.10pm
    The nurse said as my last chemo and flush went in, I would be allowed home - yay! Just needed to get my meds to take home with me from the pharmacy and unplug me and off I could go!

    6.45pm
    We're leaving hosp now, homeward bound at last.

    7.40pm
    Watching emerdale now and then eastenders and then up to bed.

    8.55pm
    In bed now, my bed at last! It's been a tough couple of days and I've been through so much, physically, mentally and emotionally and now I feel drained. I'm not back at the hosp til tues so I'll try to get chilled out and relaxed in prep for the next treatments!

    Take care everyone!

    Love stell x

    Thursday 30th June 2011

    As you can see from photo my Hickman line is in!

    Stella after Hickman Line inserted

    Yay! Hickman line in and no sedation! Check me out! And the surgical team said how brave I was to Marc, they kept going out to tell him I was doing fine and he said they told him I hadn't stopped smiling and laughing throughout! Sick! Lol

    7.30pm
    Well, I'm all settled in my hospital bed for the night now in my (actually quite nice) room! The bed is comfy, in a nice, big, light and airy room with an en-suite loo, sink n shower. My dinner was nice, staff are lovely. I've had my anti-sickness drug and steroid injections and I'm ready for the start of my 24 hour chemo marathon! I'm feeling a bit tearful and overwhelmed at the mo but I'm sure it'll pass. Take care everyone. Love Stell x

    Wednesday 29th June 2011

    YIKES!!! Omg, it's tomorrow! Am I doing the right thing? Yes, i am. Do I feel excited? A bit. Am I terrified? Oh, I think so!

    What is it though that is frightening me the most? The Hickman line being fitted (it's going in my heart, MY HEART) - not really. The chemo and losing hair - nah, not so much. The injections and the transplant - nope. Then why do I have butterflies? Is it maybe because tomorrow it all becomes real?

    But now it's gonna happen and I have to be strong and brave, it is going to take courage every step of the way and I must be positive, I must be because if I'm not then why am I doing this, if not to make my MS better and stop the relapses and even maybe improve my EDSS score.

    I know it's gonna be tough and difficult and at times painful but hey, no pain no gain! I haven't changed my mind and I am doing this.

    I've received 2 good luck cards today one from my supportive colleagues at work (everyone had signed it giving me their best wishes of good luck) and the other from my cousins again wishing me well and the card sums me up it's a picture of the wizard of oz crew and it says "You've got brains, heart and more than enough courage.......You can do it!!!"

    Yes, I can do it!

    Mon 27th June 2011

    I would just like to start my diary today off, with a big thank you to Peter Haslam and Sandra Rascher for their kind emails and best wishes, sent to MSRC.

    I have seen my haematologist and the nurse this afternoon. I've had loads of pre-treatment bloods taken (about 8 vials), I've also consented to the having my stem cells removed and stored under the human tissues act. I've also been given a couple of bits of homework for pre-Hickman line fitting. I have to wash me (whole body) and my hair in Hibiscrub wash (this is an anti-microbial wash) and wash hair twice before Hickman line and body every day, and I also have some Bactroban nasal ointment to be rubbed into nostril 3 times every day, it feels really weird - sort of numb but a bit cold and tingly too! These are all preventative measures so that I am good and clean and germ free so I don't catch any nasty's when Hickman line is fitted and also kills MRSA. I was told that on the morning not to drink anything after 6am and if I want the sedative (like I've said before - hell yeah) then I am not to eat at all that morning. I am to be at the day case unit at 8.30 - 9am and we go from there down to x-ray to have Hickman line fitted and then I will hopefully be admitted that day or the next day on Fri.

    So, I'm feeling quite frightened and nervous but also excited because I know it is all gonna be worth it and Sandra said in her kind email that she had it 7 months ago and is already noticing a marked improvement. I just need to remember that when I feel frightened and afraid or tearful and emotional. I should also remember how soul destroying each relapse has been for me because each time I have a relapse it seems like I work really hard with physio and exercises to get me walking again (with a crutch but still walking) and then as soon as I feel I'm back on my feet getting about nicely again but then BOOM! Another relapse! Every time it's like I take 2 steps forward and then 5 backward again, but not for much longer!

    Hopefully! This is my new favourite word (it used to be onomatopoeia but never mind)!

    Stell :0)

    Sunday 26th June 2011

    Not written on here for a few days now as I've had some sort of cold/virus, I felt really rough but thanks to still having a super charged immune system it's well on the mend now (unlike hubby, Marc's still quite snotty and coughing, it's to be expected tho - man flu and all that). Really glad I'm a lot better because I'm going to see Prof. Russell tomorrow for my pre-treatment appt.

    I have been in touch with the nurse from haematology quite a bit over the last couple of weeks, asking like a million (exaggerating slightly) questions about treatment and it turns out I won't be in hospital quite as long as I thought (hopefully) as I can do a lot of the treatment at home (if it all goes according to plan and i don't get an infection or experience any hiccups, that is) in the earlier stage of therapy, which is really good news.

    But I'm just about ready for it now........

    Scarves arrived - Check
    New pyjamas - Check
    Wig bought - Check
    Sleep caps - Check
    Toiletries in new bag (all bought by my lovely hubby, bless him) - Check
    Overnight/weekender bag packed - Check

    So, bring it on!

    Tues 21st June 2011

    Ok, here's what I've learned today..... A Hickman line is fitted into the heart!!! Omg, who thought of that crazy idea, let's take this tube and push it down the jugular vein and into the heart! I really wish I hadn't looked that up on the Internet. But fore warned is fore armed and now that I know what's involved, when the nurse offers me a sedative, instead of saying it's okay I think I'll be fine,  my answer will be hell yeah!!!

    So, future appt's and procedures are:-

    - I am seeing the haematologist who will doing transplant on Mon 27th June to discuss the start of treatment.
    - Hickman line is being fitted on Thurs 30th June ?morning? It is also very possible that I may be admitted to hospital that day for some chemotherapy to start the mobilisation of the stem cells, mobilisation in short, is the encouragement of stem cells in their earliest stage of development, to come out into the blood stream. I will have to stay in hospital at least 1 night, maybe 2.
    - I will need to start the injections of the stimulating factor (GCSF - granulocyte colony stimulating factor) on Tues 5th July, I can either have a district nurse come to my home to do these or do them myself. I think I will do these at home myself as I used to inject myself with Avonex, intramuscularly for my MS treatment (a long time ago now) and these injections are only under the skin jabs a bit like the one for flu jab. I will get side effects from these injections, mostly bone and muscle aches/pains (I have those anyway).
    - The next appt is on Mon 11th July to check to see if my White blood cell count is high enough to collect the stem cells, if not it could be Tues or even Wed. It will take a couple of days to collect the stem cells. Once the stem cells have been collected we will arrange a date for the transfusion, when I'll be admitted for aprox. 3 weeks.

    But all of this is bit like the best laid plans of mice and men.

    So, it's getting closer to the start date.....

    Fri 17th June 2011

    Today I have been to have an MRI not just an ordinary MRI (which is a pretty amazing machine itself) but a super MRI!

    I got to see all of the lesions on my brain (there's loads of them, not too surprised really tho) and I had a neuro examination and my EDSS (expanded disability status scale) scored (I need to ask neurologist what score I have)!

    The whole point of it is to get my results pre-treatment and then 1 year post-treatment, to see how much progress has been made.

    Diary entry - Wed 15th June 2011

    I have emailed Prof Russell and Lynne Watson (nurse) today, letting them know of our decision, as we have discussed nothing else since Mon and it has been emotionally v painful and has been the hardest decision we've ever had to make and not something that we have taken lightly. We have decided though, not to have my eggs frozen/stored. This is due to me not being able to stop my pain medication as this would be intolerable and unbearable for me.

    We want for me to able to start the procedure ASAP and without delay. We've discussed in the past about my not coming off meds to start a family and that we would both be happy to adopt a child. We both feel we have a warm and v loving home to bring a child safely up in and we both have so much love to give a child. Our hope now is to get my MS stable so that adoption is still within reach for us.

    Diary entry - Monday 13th June 2011

    We went to see Prof Russell today, he said that we could probably start the treatment off in a few weeks and we went through the procedure today, step by step:-

    1) Go into hosp for about 1 week, have a Hickman line fitted (kind of like a cannula, fitted to the jugular vein in my chest), have some chemotherapy and some stem cell growth hormones to encourage my bone marrow to produce more stem cells, then I can go home for a week. I will lose my hair at this stage but they will put me forward for a wig (plus I've seen some great wigs n scalves on eBay).

    2)  Go back into hospital (for much longer this time) whereby they will harvest my stem cells from my blood and then they separate the stem cells and freeze them.

    3) More chemotherapy but this time it is to completely wipe out my immune system and take it down to 0% immunity. I will be in isolation at this point as it is v. v. V important that I don't pick up an infection or a virus.

    4. This is the stage at which the stem cells are re-introduced and start to build up the immune system again but without it doing all of the silly nonsense it was doing before the transplant!

    The procedure reminds me of when my computer is playing up and I turn it off and on again and it has forgotten all the rubbish it was doing before!

    I asked about whether or not my eggs could be frozen/stored for me, as I will be infertile afterwards, to which I was told I could have this but it would mean putting a delay on my treatment. Marc and I said we would need to discuss this as we really didn't want to delay treatment and we also had the issue of whether we could see me ever coming off of my pain medication as a possibility because I would need to stop taking them all for 3mth before, during pregnancy and after, if I wanted to breastfeed. So we have another appt. booked for Mon 27th June which allows for Marc and I to make a decision about this matter.

    © Multiple Sclerosis Resource Centre (MSRC)

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