October 2012...Where I am now....

Now it is all about recovery after such an ordeal, and I can tell you it was horrific.  I think when I wrote most of this blog, even when i was going through it, I just described the symptoms and what was happening.  I got on with it because I had to, there was no alternative.  Even now I think I put on a brave face and only certain people really got or get glimpses of how I really felt/feel.   On reflection it was horrific but I am hoping i'm on the road to recovery properly this time.  

The good thing is that I am on less medication now:
* mycophenolate (immunosuppressants) which I should be one for another 6 months
* azithromycin (antibiotic.  This is instead of penicillin.  I will be on this for life)
* Aciclovir (anti viral)

I've had a few issues including an eye infection which meant I had terrible weeping eyes and blurred vision and now I have pain in my joints (mostly ankles, feet and knuckles).  It is common to have these odd ailments as my body has been through so much so i'm hoping they get better.

I am trying to get my strength back and over the past month have really started to improve with my strength and ability to do more.  My biggest battle is my mind!  I find it a struggle sometimes to come to terms which what I have been through.  I have an internal fight with myself that I should be so happy, grateful and positive because I have been given another chance at life. Yet on the other hand I feel so lost, like I should be doing something more profound and not to waste this new life.  I have the fear every single day that it could all come crashing down.  

I feel the perception is that I've had the transplant, it has worked so all is or will be ok.  That I not necessarily the case though.  I am in the most fragile stage of the transplant now, allowing it and protecting it enough to develop and mature.  This will take at least a year or two.  Not only can I catch things to make me ill now or that might affect my marrow in the short term but also in the long term there are other things that can happen.  Like the joint pains, like the fact I have iron overload because of all the transfusions I've had so I'll need to actually have some blood taken off me every so often to control it (how ironic is that).  It is just a never ending cycle of ups and downs.

I have to be so careful as I effectively have the immune system of a 3 month old, yet mine is complicated!  Something like the flu could see me back in hospital.  I have no immunity anymore to all the childhood illnesses I once had, so try and avoid children, Chicken pox would be very bad! I don't have the immunity to the illnesses we all had inoculations for growing up, measles, mumps, rubella, polio etc...

The problem is I can't wrap myself in cotton wool.  I can't live like a hermit even though I'd like to because I am so unbelievably scared of catching something.  I've learned to wash my hands to within an inch of their lives! It is the main way germs are spread and when someone seemingly has a cold, I never know what virus it is.  Virus's are bad for me, very bad.  I seriously feel like I want to spray everyone I meet with antibacterial gel! Sounds funny but my life kind of depends on it.

That said I am looking to return to work in January, the docs seem to think that would be ok, all being well.  I am looking forward to it as I've been off for so long but it is very daunting.

I am constantly battling the cmv virus, which seems to be my nemesis.  CMV virus is something that can be very bad news for a newly transplanted person.  It can also lead to life long medical problems such as severe lung problems, breathing difficulties, eye problems etc... Therefore it is important that the level of it in my blood is checked regularly.   I've only just come off the medication for that which affects my blood cells in a bad way.  That coupled with a cold type virus I seem to have means my white cells and platelets have dropped a lot in 2 weeks.  I am now Neutropenic again and back on the gcsf injections to try and boost them.  They seem to be coming up (as of today) but we will see.  i cant allow myself to get too hopeful anymore because I can't take the heartache if it is not good news.

At the moment I suppose I am taking each day as it comes.  Some days are really good, I feel happy and I am grateful, relieved and positive about what I have come through.  I even feel able to plan things for the future.  Other days I feel lost, despair, like I don't know what I want, I don't know how long i'll be here, so very uncertain and I just cry, all day or for many days.  Today is one of the latter days.  When I was in hospital all I wanted was my normal life back.  Now I am nearer to actually having it, it all seems almost not enough or something, or more like I should be doing something more.  I don't know and I certainly don't mean I want to change it all but it messes with my head.  I do know that I need to take this time out now to recover and relax, which is easier said than done.

What I try and do daily is cherish the wonderful people in my life, the man I love, my family and my friends, they are all people I always want in my life.  

The thing I have learned though is that I wont ever be my normal self again, I have changed and it is the new me I am trying to figure out.  it is all very hard to put into words but I hope it makes some kind of sense.

I'll finish this post with a pic of me as I am now...

An old post I found in my drafts...from October 2012 about Transplant number 2!

In May I started the conditioning treatment for transplant number 2 which involved another week long course of Chemotherapy and ALG.  It wasn't as bad the second time but maybe I was more used to feeling so ill.   Thankfully I didn't lose my hair again.

This is the chemo...
Its weird seeing it go into your body knowing you'll feel very ill very soon! 

Having said it wasn't so bad , it certainly was not pleasant.  I had sickness, lots of temperatures where I got bugs as I couldn't fight off anything myself, diarrhoea, stomach cramps, serum sickness (painful joints, tremors, fevers).

I then had the new cells given on 7th June 2012.  Then it was another waiting game for a few weeks to see if they'd taken and to keep me as healthy as possible in the meantime.

I blew up like a balloon again with water retention and because my kidneys were suffering and not working properly.  I reached the point where I could hardly move or touch my skin as it hurt so much and was laid flat in bed most of the time.  I needed the nurses to bathe me and help me change, I struggled to get to the toilet so a commode was right next to my bed.  I cried every time I moved with the immense pain I was in.  They had to put a syringe driver in my stomach which administered 24hr pain relief, I was on many painkillers including morphine.

I developed an allergy to penicillin too, which I had always been fine on before.  Wen I got a temperature, which was quite often, they had to give me immediate antibiotics and do blood culture to see what bug I had.  The first drug they would give, as a matter of course, through my Hickman line was meropenem, then they would move not stronger antibiotics.  A lot of these are penicillin based drugs and I erupted in an awful sore, itchy, bright red and lumpy rash so had to use steriod creams daily all over. 

 I still have skin discolouration on my legs from it.  I had to have a few skin biopsies to check what exactly the rash was and then they decided it was the penicillin.  So I need to remember that for life now.

I was on many medications.  The general ones I remained on were cyclosporin and mycophenolate which are immunosuppressants to suppress the immune system and stop my cells attacking the new cells.  The cyclosporin was bad for my liver and I kept having abnormal liver test results and hence they'd send me for liver ultrasounds.  Thankfully my liver was always looking normal but they took me off the cyclosporin and kept me on the mycophenolate instead.   I was also on omeprozole (for the stomach due to the stress it was under with the meds), folic acid (for cells), Azithromicin (antibiotic I will be on for life) and aciclovir (anti viral).  

My mood was so very low and it was at this time I thought it would have been easier to die.  What was the point in doing all this and putting myself through all this pain when it was all so uncertain.  I was causing pain to those who cared for me and couldn't see the light at the end of the tunnel.  I used to get worried and stressed about the future and who would look after my cat, what my family and friends were going through, what would happen with my job if I was off a long time, how would I pay my bills, how I could give my possessions to friends,  etc...  My lowest point was when I stopped thinking like that, about the future, and all I thought was I don't care.  I thought it doesn't matter what happens if I die because I wont be here.  That sounds so terribly selfish doesn't it.

It was then that I started seeing the specialist transplant counsellor.  I was diagnosed as suffering from depression and i was offered anti depressant tablets.  I didn't want them so I saw my counsellor every few days for a talk, he was brilliant and slowly i felt better and saw a little more hope.

My bloods started to improve slowly and I had regular GCSF injections to boost the white cells I had.  I started getting daily visits from the occupational therapist and physio to try and get me prepared for being out of hospital.  By this time I had spent over 7 months in hospital with only a few days out.  It meant I was very weak, could not stand up for long or walk more than a few steps.  I was unable to stand in the shower or even stand long enough at the sink to brush my teeth.  They helped me to regain my confidence and strength with exercises, helping me get ready each morning and taking me for small walks up the corridor.  I remember crying when I was finally able to wash my hair on my own, it was such an achievement for me at the time.

This is me just before discharge..looking a bit better...

After 6 weeks I was discharged.  I slowly didn't need any more platelet transfusions and then a bit later stopped needing blood transfusions.  My bone marrow biopsies were good and my day 100 post transplant biopsy showed I had good producing cells and they are 100% donor.

I visit kings hospital every other week and Northampton in between for blood tests.  I have got a lot of my strength back but have to take each day as it comes as no one day is the same as the last.

I am now on day 137 post transplant and all I can say is that it is hard, so hard.  I am doing ok but its certainly not all plain sailing....

Thought it was about time for a long overdue update!

So it has been a while and I must apologise for that.  Life seems to have taken over and I have neglected my blog.  The plus side is that I'm still here to write this and have a life, of sorts, but at times I wasn't sure I would be.   However it has been a very long and difficult journey which I have not yet finished.  I'm going to do a few updates to cover the time since my last blog in March.

I last wrote when my bone marrow transplant was not doing so well after getting the CMV virus and being treated with very toxic damaging medication (Valganciclovir).  Well unfortunately that transplant failed.  My blood levels never recovered.  I was left with no immune system or working marrow at all so I spent a long time in hospital while they kept me alive with medications, blood and platelet transfusions.

I think this might have been my darkest time.  I had spent most of the past 6 months in an isolation room in hospital, aside for the odd day when I'd be allowed home for a bit.  I was so unwell that it only took a day or two before I got an infection and had to rush back to hospital in Northampton and get taken by ambulance down to London.  I remember one particular point when I really thought it was the end.  I was in Northampton Hospital with severe Graft vs Host Disease in my skin, liver and gut.  I spent most my time in the bathroom as I was constantly vomiting, had chronic diarrhea, was on oxygen as I couldn't breath properly and had a raging temperature.  I remember my brother visiting me as he had to fly back to Australia that night and I broke down saying I couldn't do it anymore.  I seriously thought that was the last time I would see him.  I was sent by ambulance to London that night.  These were the roughest few months.  My marrow was not working, I was very ill and just didn't know what was going to happen.

In April it was decided that I would have a second transplant.  The whole process had to start again.  The transplant team rechecked the bone marrow register (Anthony Nolan Trust) and approached the best matches.  I believe I had three matches, the first I'd already had, then they approached another who lived in America and they declined to go through the process so they re-approached my original donor in Germany.

Being the obviously amazing man that he is, my German donor agreed to donate again.  The first donation  of marrow he did was just sitting in a chair having blood removed and sorted in a special machine then back in without the bit that was to be used for me.  The second time he donated they opted for the more traditional way of donating marrow cells and that is to have the marrow liquid sucked out of the bone.  I have bone marrow biopsies regularly which involved putting a needle in my back/hip bone and removing the liquid from the marrow in the middle of the bone, then taking a piece of the bone for testing.  It shows how many cells you have etc, much more than a blood test.  My donor had a similar procedure in his back where they took a much larger amount of these cells from the marrow liquid and that is what was flown over to me in London and given as my transplant.

They tried to allow me some time at home before starting the whole process again but every time I was discharged I got an infection again.  I ended up having three Hickman lines before my second transplant as they kept getting infected.  This is not a nice experience, having a plastic tube forced into your chest.  In fact I absolutely hated it and each time felt like a lump of meat on the operating table.  The surgeons were so rough, there was so much blood and I just felt violated...that's the only way I can describe it.  Having said that, it was a necessity.  My veins were no good by this point and couldn't be used and i had a line put in my neck temporarily.

So...then came Transplant number 2!...

The latest from my new home...Kings College Hospital...

We are still 'watching and waiting' and there are still lots of ups and downs in terms of news.


In essence I am ok, I feel ok, no sickness etc... I just still have no blood!  On a positive note over the past few weeks have seen my white cells and neutrophils start to increase, with a little help from GCSF cell boosting injections and from 0 they have risen to 2 which is good.  Although when the injections stop they drop a bit but at least they are producing.


It has been confirmed that the reactivation of the CMV virus and the subsequent treatment knocked my new graft cells and that is why it is very fragile right now.  Another positive is that I have 100% donor cells now but although that should seem great, they don't seem to be working or doing very much from the blood results! Positive again is that my skin GvHD rash seems under control and they are focussing on getting me off the steroids, i'm on 20mg a day now and actually can see a small (very small) difference in the swelling on my face.


It is a tricky time as they need to balance the supression of my immune system as I come off the steroids and continue on Cyclosporin.  However, bit of not so good news is that my kidneys are still not great but they are not getting worse so they think it is just the overload of toxic drugs which should get better with time.  I had a kidney ultrasound which showed they were normal at least.  However my liver over the past 2 days has gone bad!  The number of enzymes has increased massively and this is bad apparently, they will do a liver ultrasound as they think it will be swollen and this will most likely be due to have GvHD in the liver, which in turn means I would need to go back on a higher dose of steroids.


So we are still watching and waiting for the next few weeks and then I don't know.  Part of me wishes they'd just give me the top up cells and be done with it.  I am going to speak to my specialist Prof Marsh on Monday (the consultants do a month rotation on the ward and as luck would have it she is doing March!).  I trust her and I just want to know what she really thinks...in her opinion and experience will my marrow recover sufficiently.


The other thing I have been battling with and thinking about lately is that even though I have learned so much about my illness and the treatment of the years, I know the risks etc... it has dawned on me more that rarely are you 'cured'.  Speaking to transplant patients tells me that the real story is that you often live with something forever, maybe liver problems, skin problems, Gvhd etc.... I mean it can be ongoing on and off for the rest of your life.  Don't get my wrong it doesn't mean you can't live a normal life, I mean, pre transplant I was working full time, living normally and still having transfusions twice a week.  What I mean is that when you tell people you are having a bone marrow transplant they think that is it.  If it works you are cured forever....really it is only just the beginning of another story... I'm just  hope mine has a happy ending and I wish that there was more support for people with more truthful answers.


On another note I have written my letter and made an official complaint to Kings College Hospital NHS Trust regarding my lack of post transplant care and the subsequent detrimental affect it has had on my transplant success.  Believe me I am not one to complain really but I could not let this go unsaid.  We will see what happens.  It was quite therapeutic at first to write it all down and get it out of my head but today, because I had the not so good news about my liver, I feel a bit angry that my current situation could have been prevented, I mean it is only my actual life we are taking about.   That is the frustrating thing too, you get a high one day because bloods have gone up a bit and there is a glimmer of hope and all your friends and family are asking what your bloods are,are they rising etc... but in the blink of an eye things can change and you are on a complete downer.


I just want to get on with my life, I don't want much, just to go back to work, see my friends, family and Rich...nothing fancy...just normal life.


I'll finish with a nice pic of my 'substantial' (NOT) salad I had for lunch...actually I have one every day, yes every day, either cheese or egg as it is the only way to get fresh veg! seriously... and one of my risotto which is stuck together like a pancake with the congealed cheese round the side...enjoy...I didn't.

Get me off this rollercoaster......

How quickly things can change!  I am still feeling well in myself, (have caught the Flu virus whilst being back in htospital but not feeling bad) but my bloods are rubbish!


Er...yes...I am back in hospital.  After being out of Leicester Hospital for a few weeks my bloods had not started improving at all.  I basically had no white cells at all, hence no immune system and my platelets, which were once holding their own at a level of around 80 had plummeted and I became transfusion dependent again every few days (you generally need platelets if they drop to about 10).  My haemaglobin (red blood) also dropped, and very quickly so needed blood transfusions every week.  It was all disappointing as my bloods had been doing so well, but it seemed that the toxic Gancyclovir drug they treated me with for the virus flair up had affected my cells in a much bigger way.  So...when I went for an outpatient appointment in Leics, Dr Murray turned round to me and said we need to investigate whether the graft (transplant) has now failed.  This is called secondary graft failure, when it did work but something happened to make it fail at a later stage.


I was quite shocked, I had finally allowed myself to think that it had worked and that I was getting better.  It was harder too as I felt so well, and still do (well I mean in comparison to how I had been feeling).  I wasn't sick or feeling poorly and I was slowly building my strength up again and trying to get back to some sort of normality.  My bloods were just not showing it!


Dr Hunter in Leicester spoke to Professor Marsh in London and she arranged for me to be readmitted.  Here I am writing from Kings College Hospital again.


I haven't had any treatment here, I don't need anything other than some platelets and blood every so often, it is all about monitoring me really.  Although I was told today I could go home if I lived nearer as i'd need to come in every couple of days for tests, but as I don't I am stuck here for a while longer.  But quite frankly I don't mind, I just want to get this all sorted.  It has also given me a chance to voice my concerns to key people about 'Kings' pretty much forgetting about me, not booking me a clinic follow up appointment when I was discharged (i had to book my own as I knew I was meant to be seen in about two weeks - didn't make it though, got admitted to Leics) and not liaising properly with my local hospital who had no experience of transplant patients. t seems there had been a few errors on their part with regard to follow up which they have admitted.  Unfortunately it seems apparent that had these not happened I would most likely not be in this situation now, something I am considering carefully at the moment.


Anyway...they did a bone marrow biopsy last week which was my day 90 biopsy due anyway, this is the only way to know what cell production is in my marrow.  I've been waiting a week for some results and today they told me that  there are cells in the marrow but not many, all the cells are male (which corresponds to my donor being male) which is a good thing, but as there are not many they are not making many other blood cells.  The question is now really is whether they can recover enough to raise my bloods and be ok.  I also still have Graft vs Host Disease on my skin a bit which again is a good sign that there are donor cells there and they are working.  My white cells have over the past 4 days started to increase, very slowly and by small amounts but still it is something.


So the plan of action....wait! They want to monitor me over the next few weeks to see what my bloods do and keep giving me the GCSF injections (cell boosters).  They want to get me off the steroids and are continuing to reduce my dose but that needs close monitoring as the GvHD can flair up (it has a little since i've been in here but that is not a bad thing at the moment) and also it affects how my marrow is suppressed so it is a bit of a juggling act with medications (cyclosporin).  In the meantime they will approach my donor again and see if he will donate more cells if necessary as this process can take a while.  Hopefully my cells recover themselves to adequate levels, if not they will give me a donor cell top up but thankfully it doesn't involve all the horrid chemo regime I had before etc... so should be ok.


I have always been very honest on here so thought I would add a couple of pics of before and during/after steroids...even though I cannot even look at myself in the mirror at the moment as I don't know the person staring back, I am going to be brave and share the pics with you as I think it is important, and you can see my hair growing back!   I have mentioned the side affects of the steroids, the main one is the 'moon face' (yes this is the technical term!), very sore, hot and hard swollen cheeks, swollen inside the mouth too, huge extra chin, hump on back of your neck and swollen neck.  These go away THANKFULLY..when on a lower dose and off the steroids...roll on a few weeks time... I need to feel like me again.

Pre - Transplant

Steroids! - Post Transplant

Oh incidentally today is the magical day 100...bit of a let down really! 


I also want to say thank you to my amazing friends and family who are a constant support, travelling all over the place visiting me, doing errands for me...bills still need paying, life stuff still needs sorting when you are sick...and buying me supplies and treats to stave off the boredom...and to Rich who is my rock...and who thankfully still has those rose tinted glasses on when looking at my horrific 'moon face'...i'll be back, I promise! 

Out of hospital and feeling good...

So I have been out of hospital after needing the anti viral drugs for just over a week now and I am feeling good and positive.


My GvHD is under control and they are reducing my steroids, they were reduced yesterday...can't wait to get off them, although it will be a few weeks yet, as it is the one thing that makes me feel rubbish.  They swell my face to the point it is sore and HUGE! but at least I know that it will go away when I am off them so it is a temporary thing to have to put up with.


They have also reduced the anti viral mediation I am on to control the CMV virus as that makes your bloods drop a lot and it means I have had very low blood for a few weeks now.  However once they recover which should start happening from now it will be good as we already know I have 97% donor cells in my marrow so they will kick into action as they won't be so suppressed. 


Linked to this is that my body has started transferring my blood to A+ which is the donors blood group.  I was/am O+.  What happened initially is that my red blood dropped very quickly as I was making antibodies to the 'foreign' A+ blood that my new cells were making so the blood cells were dying quickly, hence my need for transfusions a lot.  Now I am making both blood groups and because I am am coming off the anti viral drugs which were suppressing my blood cells it means that soon I will turn properly to A+ blood as they will be able to develop in my marrow to healthy full red blood cells.  It is all really fascinating! 


I am feeling much better about lots of things, very positive, so happy this is all working.  I still have a way to go but I see light at the end of the tunnel.  I can think more about the next couple of months and building my strength up to go back to work etc... and that feels really good.  At one point a month or so ago I felt so low and like I would be off work and poorly forever! I know, of course, you never know what could happen, but things are looking positive for now and I am very thankful for that.


I actually had some blood today and I wanted to mention the Northampton Haematology Day Centre...well it is now called the Macmillan Haematology Unit as they have just had a complete rebuild of the unit and Macmillan has paid for this...costing £2 million pound...This unit has been an essential part of my life for a few years now and has helped me so much.  It really is amazing in there now state of the art and so much more comfortable when you are not very well, sitting there for hours at a time having treatment.  The nurses are an exceptional team who I have become very close to and I wanted to let everyone know that they had to and are still fundraising to pay for the unit so if you want to donate then that would be lovely!  I wouldn't be here today if they hadn't been able to help me so much.  Prior to my transplant I was there twice a week having blood products to keep me alive, they were so accommodating to my life too, enabling me to have platelets in the morning before work etc...  Sorry if I went on there but it is important to me.


Anyway best be off...rich is cooking me dinner...with my instruction (he he)...I am a hazard with a knife at the moment with my shaky hands....again drug side effect related so will go soon!  Although with my new Kenwood Chef Mixer I am baking again which is a great therapy for me. Yummo! 

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!