Still in hospital...I might eat myself if I am not careful...and i've been thinking...

I am still in hospital, arghhhh.....  As you know I was readmitted, this time to Leicester Royal Infirmary just over a week ago to up my steroids again and try and get rid of this Graft vs Host Disease that came back.

Incidentally pics of my room at Leicester...very different to kings...like stepping back in time, but they are very nice here.

 

I very quickly started improving which was fab, the rash went in a couple of days and they started reducing my steroids again.  I am now off of the intravenous ones and on a lowering dose of the tablets.  I was being discharged on Tuesday (24th) and the day before they were prepping my discharge notes to speed up the process on the actual discharge day.  Then literally 10 minutes after the doctor had come in to speak to me about the discharge notes and medications he came back in to say there was a problem!

Damn it...  they had got a blood result back for a virus called CMV.  This is one of 3 virus's that they check for in your body to see whether you are a carrier before transplant.  It one of the most common virus' and once you've had it, usually from childhood, it lies dormant in your system and when you are immune compromised such as having a transplant it can reawaken and make you ill.  I carry this one virus called CMV so i've been on some medication to try ad keep it dormant but....the blood test results showed it has reawakened.

I don't feel ill at all, but they have to stop it or it will lead to bad things and we do not want that! So unfortunately they have to give me 7 days worth of an anti viral medication intravenously through my hickman line.  They can put me on tablets, which they probably will when I eventually get discharged but the complications are that this anti viral medication often makes your blood counts drop (brilliant!) and can make your kidney and liver function bad as it is very strong so I need to be in hospital to have it.  

On top of this I am still extra immune suppressed by being on the steroids still.  Thankfully though I am feeling fine, my only side effects, things that are making me feel unwell are the steroids and growth injections which make my bones really hurt...I needed morphine the other night!  I feel like my whole lower body is being stretched and stabbed all the time which is painful and I am very weak if I try and walk.  I am just happy I don't feel sick, can eat, can breath fine etc...

It is now a waiting game as frustratingly they are a little slow here.  The CMV blood test check is only done on a Monday and Thursday and takes at least 3 days to get the results.  Therefore I could be ok but need to wait 3 days for the results before they'd let me out meaning I won't forseeably be leaving hospital anytime before the middle to end of next week....Roll on February! Argh....

So I mentioned I might eat myself....I seem to be thinking of food all the time.  In fact one of my projects while I am off os to sort out all my recipes and get some order/type them up or something.   I am having a bad day in terms of boredom, although feel a bit better for getting sorted and writing this...I always think I don't have anything to say then blab on for ages...sorry I digress.  Yes, I seriously have just had an eating day today...I feel like it has been constant and actually I don't care, although I will have to start caring soon I think.

You will be pleased to hear the food in here is so much better than Kings.  You get to choose your main, then you choose your potato bit and veg bit separately.  The soups are not powdered and actually contain real bits of veg...shock horror! The Veggie options are basic, like pasta bake, veggie burger, leek and potato pie (the worst thing as it is literally a load of mash potato with cheese on top...very dry but I am not complaining, oh no.  In fact a lot is dry but so much more edible and like proper food.  There is a kitchen and if I am not neutropenic I can go in myself and get stuff, in fact you make your own brekkie in that case.  The kitchen has all sorts of drinks, cheese and crackers, fruit, crisps, choc, biscuits, soups, bread...makes you feel more in control rather than dictated to as to when you can eat.

Food becomes a massive part of your day, you look forward to receiving your meals etc... when you are in for such a long time, one could say it is the highlight! 

Other news...I am thinking once again of when I life is getting back on track.  I feel more positive although I know it will be a longer than 6 month process now.  I have always loved baking etc and so I have decided to set up a cake/bake club when I am better.  I cannot find one in Northampton and it will be a social thing maybe once a month or something, each person makes a cake, it can be themed, round someones house or at a venue, chat, laughter, recipe swap, could even have baking sessions such as bread and share it out etc.... lots of ideas but it excites me.  Got inspiration from Clandestine Cake club http://clandestinecakeclub.co.uk which is a national thing so might set up one of those in Npton as a starter.

The other thing is that I have always thought of myself as creative and love sewing, making home stuff, bags etc... which I used to do.  I've wanted to hone my skills, maybe do some craft/vintage fairs etc and I have finally found a great studio where you can do sewing sessions, courses, stitch and bitch sessions each week and it is only around the corner from my house! Just need to get better......

Bye for now...it's dinner time in approx 47 minutes...now what did I order...

Let's talk about Money...and a bit of AMAZING NEWS!

Firstly the latest update is that I am back in hospital...but I am ok with it as I finally feel I am getting the aftercare I need.  I am in Leicester Royal Infirmary Transplant Unit this time which is my nearest unit and the one that works with Northampton.  I am under the care of a consultant called Dr Hunter (she liaises with Prof Marsh in London) and she is fantastic.  Quite frankly it is so nice to be able to finally have someone in control of my aftercare which is so important, Kings College Hospital have been appalling with this and it is something I am taking further.


I am back in hospital as my Graft vs Host Disease flared up again.  I was on a lowering weaning off dose of the steroids they started me on to help with it but the skin rash came back over my whole body and Dr Hunter, who I had an appointment with in Northampton, decided to admit me to get it under control.  I was put back on higher dose steroids and the rash has practically gone, we are now lowering the dose over the next few days and I should be home on Monday.  I feel good although still very weak and have shakes in my hands from the cyclosporin drug I am on and cramp in them too which makes it hard to do things, but it is all a balancing act and hopefully all will be well and the GvHD will not flair up again.  The Immune system is a learning system so it has been suppressed and put into check, basically told it cannot do what it is doing, the attacking, and it should learn!  Very complicated but amazing stuff.


Had AMAZING news the other day... I have to have bone marrow biopsies every 30 days so I had my second one last week.  They take a piece of bone and the liquid from the inside of the bone from my hip so they can see what the cells are doing in the marrow and how they are growing.  The aim after transplant is to have 100% donor cells and none of mine and I currently have 97% donor cells in my marrow....WooHooooooooo.....


So I have yet to talk about money even though it has been a thing that has occupied my stressed out mind for a number of months.  Being faced with a life threatening cancer illness and the prospect of months off of work is very daunting if you don't have a load of savings in the bank or a helpful family, because I can tell you now you get nothing from the government! 


Don't get me wrong I don't believe anyone owes me a living, I want to work, I have a job, pay my own way, pay all my taxes etc.... but if you get sick you get no short term help, yet this is surely the time that you need it.  Temporary short term financial assistance from the benefits system (don't get me started on the inequalities of that!) when you faced with a life threatening illness, which is not fixed will effectively leave to death...so it's pretty important and urgent to continue with treatment! You get more money just randomly given to you by the government for going through the wonderful choice of having your own child even if you have a partner and work.


In my work contract I get 2 months full pay, 2 months half pay and then I go onto Statutory sick pay for 2 months (this is £81.60 a week).  I am currently in month 4 of my sick leave so on half pay.  After 6 months I get no pay from work and then I can apply for employment support allowance which is approx £65 a week.  My rent alone on my house, without bills is £610 a month! hmmm.... you do the math! 


When I was preparing for the treatment and the time off of work I looked into any financial assistance I might be entitled to.  Thinking in my naivety that there would be some.  I called the benefits helpline and they basically told me about the following I could apply for but may not be entitled to:


Employment support allowance - can only be applied for after 6 months when Statutory sick pay ends, £65 a week.
Council tax & Housing benefits - Can only be applied for after 6 months when money coming in is low enough to qualify, It will roughly half my council tax to around £65 a month.
Disability Living Allowance - Is only payable if you will have care needs for over 6 - 9 months.  Is made up of a care and mobility component depending on your needs and can vary from £20 a week to £150 a week.  I have been rejected for this already as I was told I'd only be off for 6 months, although not sure that is likely now, it may be a little longer.


That is it...that is all the benefits that I could apply for but definitely don't get if you are off for 6 months, even when on only £81.60 a week.


There is also very little help and advice out there.  Macmillan are the main charity, well only one, that offers comprehensive advice on money for people faced with cancer, and they have been great. They also offer grants of £500 to help with all the costs of being ill which I was initially told I could not apply for as my initial diagnosis was bone marrow failure (Aplastic Anaemia) even though the treatment is exactly the same as for a cancer patient.  However my illness developed to include Myelodysplasia which is a pre-cancerous condition so I have been told by the very helpful staff here at Leicester Royal I can apply.  It is such a stressful time, what you are thinking is will this treatment work, am I going to live! However your mind becomes occupied with can I pay my rent and bills, will I lose my house!  This is certainly not conducive to getting you feeling better and fighting fit.


Costs mount massively when you are sick too.  Thankfully as I am currently under regular care of the hospital I get my medications given to me, considering I have to take around 20 tablets a day plus creams and lotions for my skin, mouth washes etc...  Eventually I won't, like the past 8years where I have been on medication for my illness and paid for my prescriptions, and will have to pay £7.40 per item at the pharmacy! If I was on benefits or was a single mother, or an asylum seeker or a layabout not getting a job, or any other things I could say here which are probably very politically incorrect (don't get me wrong I know there are many desrving people on benefits but we all know there are many that are not!), I'd get it all paid for.....All of it! It makes my blood boil.  Even pregnant people get free prescriptions and dental care etc... and that as far as i'm concerned it your own choice to make!  I had no choice in this...I had this treatment or I died....simple.


Travel costs to and from the hospital, London, Northampton 3 times a week, Leicester...all adds up.  My family have spent a fortune.  My mum and aunt stayed in London 2 nights a week for 6 weeks so it was approximately £100 a day for that, plus petrol getting down there and back, then when I was readmitted they had train fairs a few times a week to visit for another 3 weeks.  They had to buy me food too as it was so appalling in Kings.


I should have just got pregnant at 16 and i'd be sorted financially now! Ah I feel a bit better for writing that down... this is like therapy!


Until next time....


P.s...I am not anti pregnant people...honest...just think if you choose to have a child you should be able to pay for it, but that is another story! ha ha....

Its been a while.....here is the update...

Last time I wrote was back at the end of November and I'd had a bad bought of infection in my lungs but was coming out of the darkside...or so I thought....here is the next chapter...with some pretty horrid pictures too but this is real life!


I seemed to get a lot better and was eventually able to come off of the oxygen.  On Thursday 8th December I was discharged and came home, a very long day as they take so long to let you out the actual hospital we didn't get home to Northampton until late in the evening as it is a long drive from Kings.  I felt Ok, I mean, how was I meant to feel after a bone marrow transplant.  I didn't think I was meant to feel great just yet!


I was still being sick many times a day, unable to eat much at all, if anything, so that was about 4 weeks without eating a proper meal at one point.  In fact just the thought of food was awful and made me want to be sick.  The thought of taking my medication...approx 30 tablets a day plus mouth washes, liquids etc... made me feel and be sick.  I felt very cold I remember and basically spent the next 2 days wrapped up under a duvet at home.  It was all a massive struggle but I was home so I just tried to wake up and function each day...I managed for 3 days!  I did manage to have one nice day with my brother who was over from Australia when I came out and we watched Harry Potter films in the living room! 


Monday morning came and it had been arranged for me to go to my local hospital as I had done before for blood tests.  It was this day I was readmitted to hospital.  My kidneys and liver were on the verge of breaking point, I had a temperature, my lungs were raspy again and I had developed very bad Graft vs Host disease on my skin, where a thick, sore, lumpy rash spread rapidy across my body as a reaction.


This was such a low time, I felt so ill and wondered sometimes if I'd see the next day and how much more I could take.   I got more poorly, went back on oxygen to help me breath and was blue light ambulanced down to Kings College Hospital at midnight on Thursday 15th December for more specialist treatment.  By now I was on oxygen again and had a severe lung infection and the Graft vs Host Disease (GvHD) was very bad.


So...back in Kings I was put on a large dose of steroids.  They try to avoid this but if the GvHD takes hold they have to do it, it is because steroids also act as a suppressant for the immune system which they don't want considering the fragility of the new system and already being on a drug called Cyclosporin which is a suppressant also.  I also had loads of fluids running constantly to try and flush my kidneys etc... I was put straight back on intravenous Antibiotics, antifungals etc...  I also underwent two broncoscopies (camera put down into your lungs - the most horrific experience!) to try and see what was going on and take samples.  I also had a 'blood eye' as i'd coughed and burst a vessel in it...pretty....

Blood shot eye

Bad times....

I can speculate a lot right now and this is an ongoing issue in my mind but I think and everyone (other docs etc....) seem to agree, I should never have been discharged that first time.

So I spent Christmas and New Year in hospital and I didn't care at the time, when you are poorly you don't!  It was actually around Xmas day I was feeling a lot better,  I was off the oxygen and I think I ate my first proper meal for weeks...my veggie Xmas dinner, hospital style.  A dry quorn fillet, potatoes, one stuffing ball, rock hard carrots & sprouts but at the time it was bliss to be able to eat it....in fact I had it for lunch and dinner! 

My veggie Xmas Dinner

Another nice touch, very unexpected, was on Xmas morning when four of my nurses came into my room singing 'We wish you a Merry Christmas' with a present (some M&S Bath smellies).


I found this second stint in Kings much different as there were different nurses due to the Xmas period and I felt a bit more isolated.  I have a lot to say about a few things I am really really unhappy about with regard to some of my care but that is for another time/another forum I think and unfortunately something I will be taking further.

Hair shaved off as coming out

What I look like now....

So here I am now....I was discharged on Tuesday 3rd January when my most amazing boyfriend (words now fail me when it comes to this brilliant man!) came to get me.  I am feeling so much better than when I came out before...that's why I know I was let out too early!  I have to be very careful about seeing people, catching colds etc.. as my immune system is so fragile, like a new born child but with all the other stuff going on too like having another persons cells.  I am on a lot of medication which is like a military operation daily.  My face is massive and round due to the steroids I am on (they have to wean you off of them slowly but roll on 21st Jan when I am off mine!)  I go to my local hospital 3 times a week for blood tests and check up with the doctors but I don't mind, I am just so happy to be feeling human again.


I am very weak, having been in hospital for 2 months only walking a few steps at most in my room means my muscles don't work properly (plus the steroids affect the muscles).  I really am just resting now, and I can tell you even resting makes me tired! I know I still have a long way to go but I feel like I am on the road to recovery.


I am now on day +56 post transplant and we are all aiming to get to day 100 without any more glitches...I have had one bone marrow biopsy so far (have another next week, every 30 days) which showed good results and the new cells working.  I have not had to have a platelet transfusion for at least a month (I was having these every 3 days before), my white cells are around 5 and holding their own, neutrophils were 4 at last count which is amazing for me.  I still need red blood sometimes but the levels fluctuate up and down and this is normally the last thing to settle.


There we go...I am sure I missed loads out but I was not in a fit state to communicate with anyone for such a long time.


Until next time, thanks for reading and caring!