What does today mean to you...

Yet again it has been a while since I last wrote a post.  I suppose I started this blog for a few reasons, one as a type of therapy, in the hope that if I wrote things down and expressed my feelings it would help me get through the treatment and secondly, to keep friends and family updated on what was happening when I was stuck in hospital and not able to see everyone.

I have been thinking lately that the whole 'writing things down' thing is helpful and have decided to continue on with my blog properly.  A lot of how I think and feel has changed since my treatment and I am now at a stage where I am trying to figure out my place and how to live in the present.  I don't want to come across all annoying and 'new age' but the only way to explain how I feel is like I have seen the light and most of the people I know, or certainly people my age, have not.  I certainly don't mean that in a derogatory sense, I wish I hadn't seen the light to be honest but I have and I need to find a way of living with this new knowledge.  When I say that term, I mean that at the age of 30 I had all my current ideas of life ripped apart, I had to face head on, not only my mortality but also so much sadness, disappointment and huge let down, something that we don't generally have to do until a lot later in life. My hopes for life were wiped out because all I could see was bad things happening constantly.  When I'd get a bit of hope, it was taken from me. How could I ever trust that life could be good again.  It made me have a very pessimistic view of the future.

I remember a particular day before my transplant vividly, it was summer and I was standing outside my work place waiting for a friend as we were going for a drink that evening.  I was wearing a blue summer dress with coral embroidered flowers on it and it was a lovely summer day.  I was happy, i'd started a new life back in Northampton, was settling into a new job at Marie Curie that I loved and that meant something and I was feeling fit and healthy after signing up with a personal trainer.   On that day, in that dress, I had every reason to believe that life was good and that the future would be also.  Don't get me wrong, I've always been aware that bad things can happen but on a daily basis you just get on with life.  Fast forward to now... This is very difficult to explain but I'll try...Now I have lost that feeling of assuming or thinking life will be ok. That ability to live in the present and believe the future can be positive based on the assumptions of the past.  The experience of the transplant process, the first failing, a second transplant, then both my hips collapsing and both being replaced forced meto see life in a different way.  I no longer have those assumptions to underpin my life and happiness.  I have to find a way of believing I can be happy with this new knowledge I've experienced...the 'light'.  I hope that makes some sense!

I want to point out I am not blinkered, I know life isn't always a bed of roses.  I certainly know that from first hand experience but also from common sense.  It's not about wanting to be happy all the time and expecting that now, but about a more simple, paired down life in every sense of the word. Truly, and I mean truly living in a way that benefits myself and those dearest to me.  Looking at what really honestly matters.  It is a bit idealistic really... But why can't I live like that.  Why don't we all live more like that, it's much better for our minds and overall wellbeing.  Why slog ourselves through life, work, wanting this that and the other for some kind of gratification, who benefits? We don't, not really.  I want off that treadmill, I want to call the shots more, as best I can, on my life.  It's short and I'm already on a second borrowed chance. 

I have been embarking on a few things, not to get my life back, which is what I used to wish for, as for me that has gone, but to be able to live my new one.  I am feeing much more positive but I still have bad days when I cannot see a way forward and feel overwhelmed with what has happened, although they are less frequent now.  I know the time has come to move forward and I am taking steps to do that.   It has certainly highlighted that life after treatment is not plain sailing and support is most definitely needed, more so even.  When you are in hospital having treatment you are on a well oiled medical treadmill, it is when you get off that it becomes very difficult. 

I have embarked on a healthier lifestyle for myself and in turn Rich, and with his support we are now choosing a new and different type of life.  I'm not going to work full time, certainly for the foreseeable future, maybe forever.  It is something I feel unable to do, unable to comprehend.  Rather I am going to support Rich in his career and look after our home, cooking, washing, cleaning etc... A bit old school I suppose!  I now plan and cook all our meals so they are balanced and nutritious, bake all the types of bread we eat, plus things like healthy breakfast bars for on the go.  I cook everything from scratch from soups, stews, pasta sauces, curries, even baked beans using dried beans!  I am dabbling with vegan at the moment too and looking into nutrition etc...

I have been vegetarian since I as 12 years old and always been conscious of where food comes from but since being ill I am much more aware of chemicals in our food and environment.  I have had so many pumped into my body through the form of medication and chemotherapy and I basically don't want anymore if I can help it. 

I hope, once my hip/walking rehabilitation is complete, to find a little part time job.  The difference this time is that I will work really to earn a bit of extra cash not for career gain etc... But that I will have a different attitude, that is the biggest shift in thinking.   I just don't want the pressures anymore, why do we put ourselves through it.  My focus will be my life, myself, Rich and my closest friends and family, not money or work or anything else, that will be secondary.

We are also planning our vegetable growing for this year and expanding it so we can be much more self sufficient.  The hope is that we can move, in the not too distant future, to a village as we are looking for that kind of environment to live in now.  Although, I'm really thinking one day at a time right now but it is nice to have some dreams, my aim is to let myself think them rather than being negative about the future and what it could bring, to hopefully embrace that it might not all be bad. 

So that is a quick overview of where I am coming from, I think it is scary but also exciting and a positive way to move forward but most of all I have to do this, I have to find a way of living with my new thoughts, I am thankfully alive afterall! 

I will finish with an update on where I am now healthwise etc... as my last proper update was in June last year... There is lots of positive news actually which has led me to where I am today...

* I had my right total hip replacement on 10 July 2014 and my left total hip replacement on 13 November 2014.  Both operations went really well, I was only in hospital for 2 days each time.  Although it was painful, certainly the first one was worse as I still had one broken hip, it was nothing compared to the pain I had been in.  I am now in the process of pretty much teaching my body, posture, muscles etc how to walk again.  I am doing well, am down to one crutch but I get very tired walking as my body and muscles are weak.  I see a physio who is helping me and I have some ache/pain but again it is nothing like before so I accept it and feel able to cope with it.  I do feel a bit weird about having two artificial hips but there's nothing I can do about that!  The hope is that they will last a good 15 years and I can have each one done once more in my lifetime. 

* Rich and I are engaged! We got engaged on our anniversary, 2nd July at Chatworth House in Derbyshire, a place I love.  The wedding is on 7 November this year and we are planning that at the moment.  I suppose I should say we are also happily living under one roof and my flat sale completed just before Christmas.  We are very happy together, he is amazing, together we are amazing. 

* I am the volunteer member of the the new Anthony Nolan Trust Grants Panel which I find so rewarding and it is great to be able to do something to help those in need who are going through the transplant process, as well as give something back to the charity who helped me.  

So that was a bit of a heavy post but I'm back on track and my future posts will be more about everyday life, progress, things I do, make, bake etc... I hope!

I'll end on something I discussed with my psychologist about the meaning of life... Instead of stressing over what life means, pair it down to think about what today means to you in this moment, that is what matters...

groundhog day...

I said to my psychologist the other day that I felt every day was like groundhog day.  I feel I am treading water, trying to get through quicksand or walking through glue... I hate that I have had to give up work, I cannot walk more than a couple of metres, cannot move without pain.  I feel so very confined physically and mentally.  She discussed this with me and actually reminded me that yes, I am confined to a certain extent, certainly from a mobility & pain point of view but not every day is the same.  I do have moments of happiness...I might see my mum or family, have a natter with a friend, go out for dinner with Rich or sit in the garden reading a book.  I am not doing the things I want to do because of the problems with my hips but I need to make the best out of what I can do.  I like how she put that.

I try every day now to make sure I get up out of bed and get washed and dressed as best I can.  it is difficult as I cannot get in my bath now, I cannot lift my legs up and can't reach down so putting trousers on and shoes is hard.  I do my best though, i try and do something every day.  That something is quite difficult for me.  The pain is unbearable, the morphine for the pain makes me drowsy and so very sleep and my mood is so variable because of everything that has happened...but...I do my best.  If I can succeed in doing just one thing like some sewing, reading a book, making a cake, and not laying in bed which is quite frankly what i want to do and what feels best, then I make each day different and keep going.

I am trying, with the help of my psychologist, to make these little daily activities or tasks meaningful.  Can I read a book that will teach me something? or make something to sell etc...  I need to take each day as it comes, one day at a time right now.  It is uncertain when my hip replacement operations will be done and how well I will recover, although a glimmer of light is there as I had my pre-op assessment done this week and it looks like the first operations may be within about a month.  I cannot allow myself to get hopeful yet though or think about the future properly because I cannot take the disappointment, stress and upset if it all changes or goes wrong again.

That is the world I live in now, it's all a bit...sort of...nothingness... I get upset because I cannot help myself thinking of the future and what I want, and I am not talking big dreams here, I talking basic things like, walking, working, going out without the wheelchair!  I also am so worried that once (even saying that scares me!) these operations are done and hopefully all ok and I get mobility back as best I can, that I will not be any better.  I think people around me think that once I can walk again that is it, I will be better.  I am worried about my mind.  My Psychologist says we cannot move on to think about or tackle that issue until these hip operations are done and I understand that.  I know that in that short period after my second successful transplant, before my hips gave way, I was struggling.  Struggling with the notion that I had this second chance at life and I should be so grateful and want to live it to the full, be happy to be alive.  I was happy to be alive but I had changed and I couldn't get around my thoughts that I had gone through so much hurt, illness, pain to live this life of spending all of it in a job, going to work every day, coming home, making dinner, going to bed, doing it all over again the next day, trying to enjoy weekends, it is all so mundane, so regimented and bit meaningless.  It is hard to explain but I think that after these operations, that is my next battle.

For now, I am taking each day as it comes as best I can.  I can feel I am getting better emotionally.  I know it has been helped by being back with Rich.  I am so happy with him, we are so happy.  We deserve to be happy now and move forward in our lives together as together we have both been on this hard journey over the past 3 years.  It has definitely helped to talk to my psychologist (she is funded by Macmillan I might add...another fantastic service offered by that charity!).

My next hurdle is the right total hip replacement operation which will be happening in the next month or so... what happens after that I do not know...

Lying...

I've titled this post 'lying' for two reasons and meanings... firstly I am lying in bed, having been off work all week with full blown horrid flu! I've not had flu before and I don't ever want it again.  The first signs I had caught a virus were a few weeks ago when, out of the blue, after a routine blood test, my platelets had dropped by half down to 75.  It was a shock and I was very worried.  I constantly am on edge when I have blood tests, probably always will be, as I always think someone is going to tell me I am illl again.  I worry about it more now as I seriously don't think I could go through it all again.

Anyway, virus cells showed up in my blood so my doctors weren't worried and put it down to that (I might add all my other bloods were great still).  I then felt really poorly last weekend, sick, shivery, sweating, temperature and went to the hospital first thing Monday morning.  They did lots of bloods and tests and confirmed flu and my pleatelets dropped again to 21.  I'm taking Tamiflu tablets and today i'm finally starting to feel human again plus my platelets have risen to 66 which can only be a good thing.

I said at the beginning that this was called 'lying' for two reasons and the second is because I have been lying....big time lying to you, myself, everyone....  I haven't done it on purpose as such, more to try and make things ok.

Basically I am not ok, or have not been ok.  I have been struggling for a long time with my mood, how I feel, crying a lot, not having the motivation or energy to go out, do anything, work has been a struggle and pretty much the only thing I've managed to keep doing.

I was diagnosed with depression when I was in hospital during the second transplant.  I had been in hospital so many months by then, was very poorly and the first transplant had failed.  I got to a point where I used to think that dying would be better.  I'd lay there and think that if I was dead, I wouldn't hurt anymore, I wouldn't need to worry anymore and none of it would matter anymore.  Don't get me wrong, although I was thinking like this, I never actually thought about killing myself, the actual act or how to do it.  I just felt total nothingness and despair, like I was in a black hole.

I can honestly say that the past few months I've been back to that black hole.  Slightly different this time, but thinking why did I go through all that pain and treatment to live the life I've got now.  I cried every day pretty much, so deeply unhappy.  I was so hopeful when my second transplant worked and I got over that and went back to work etc.... A massive set back has been the avascular necrosis in my hips.  It has stopped my life really.  My mum keeps telling me it is only temporary and I just need to get over this last hurdle, but I'm sick of getting over hurdles, I'm sick of being strong all the time, I don't know how much strength I have left.  Then Rich and I splitting up has just compounded those feelings.  When you are with someone you love and who apparently loves you, you feel invincible.  I felt I could face anything with him by my side.  Then all of a sudden I was on my own.  Yes, I know I have my friends and family, wonderful they are too! But they have their own busy lives....it's not the same...you I know what I mean.  I have found myself living and working (in my new job from home) on my own and becoming more and more lonely, down about my leg pain, frustration with mobility with confinement more and more to the home, as well as so deeply sad and trying to heal my broken heart.

I have been on a downward spiral of depression for a few months and it all came to a head on Monday.  My platelets dropping, living on this constant knife edge of whether blood results are ok or not, and then being poorly caused me to have a kind of break down I think.  I was a wreck on Monday, but as I was at the hospital it meant that I couldn't hide it.  I had been crying constantly all weekend, whilst being ill, I couldn't get out of bed, motivate myself, didn't want to speak to anyone.  At the hospital when I spoke to the nurses and doctors about being ill that weekend, it just all came out which has helped me immensely.  I know it has not gone away but I now feel able to deal with it again.

I chatted with the Macmillan Nurse specialist and she was telling me it is really common to feel like this after treatment such as mine.  You have this inner pressure, and outer from work etc... To be normal again, to live life because you've had this second chance and it could have so easily been different.  Yet it is so hard to go back to normality when you've been through something so traumatic and life changing.  I question that I am wasting my life, going to work etc... Even though I like my job, but what else can I do, I have ideas but, well for now, they need to go on hold.  I need to accept that.   I am seeing a counsellor again and to be honest, just finally admitting it properly has helped me so much.   Depression is a strange thing, people think they can talk you out of it, tell you everything is ok, life is good, take you out, make you happy, but it is deep rooted in your mind.  Minds are complicated funny things.

I can't really even believe the amount of bad luck I've had over the past few years, surely now I deserve some happiness, I don't think I deserved the bad stuff in the first place but I think I've done my bit now, it's time I was able to live and be happy.  I don't ask for much, just a simple life and to be happy. I know I've got a journey to go on yet but I am hopeful, I can now see that glimmer of the other side and I can now understand how strong I have been, how much I have pulled myself through and that is an immensely positive thing. 

I feel I can actually honestly say now that I will not let this beat me.  I am a strong person and I will be ok.  I am finding the strength for these last hurdles with my mind and my hip ops so I can truly live my second chance at life.

Update...long overdue!

Well it has been a long time, a year in fact, since I last wrote on my blog.  I suppose this is a good thing because it means life has been getting in the way!

I've just read my last post from January 2013 and it was very positive, I was getting my life back on track and my bloods were doing really well.  So here is an update from there on this roller coaster that is my transplant journey....

In January 2013 I was all set to return to work, having been off for so many months, however my body was not going to let that be a smooth process...I had a reactivation of my nemesis, the CMV virus.  My bloods were much stronger at this point but it did mean I had to delay going back to work for a month because of needing intravenous drugs every 12 hours in hospital.  I didn't want to stay in so went to Npton General twice a day for a couple of weeks.  It was very draining and disappointing. However I successful got over that and returned to work in February 2013'

It was wonderful to be back at work as fundraiser for Northants, Leicestershire and Rutland at Marie Curie Cancer Care  although it had changed a lot with staff changes etc... But in essence I was so happy to be back.  I did unfortunately encounter a tough time, was overlooked by management because I'd been off sick and I felt very discriminated against.  Anyway there is no point going on about that here, it is done and dusted.  I felt it was time for me to move on from there and I successfully got the role of Regional Fundraiser covering East Midlands for Teenage Cancer Trust.  I absolutely love my job and the charity is phenomenal, I've been in the role nearly 6 months now.

So that is a positive point.... However the medical problems did not stop unfortunately... I mentioned in my last blog post that I had pains in my legs.  I was eventually diagnosed with Avascular Necrosis, which is basically the death of the bone.  The steroids I was on, which were effectively keeping me alive between the two transplants, caused it.  They can stop the blood supply to the bone, mostly in hips and knees, and cause the bone to kind of die.  It has affected both my hips and my knees a little.

I have seen an orthopaedic surgeon and had MRI scans etc... They show that both my hip bones have collapsed and are in effect broken.  I have to walk with crutches and it is extremely painful so I am on lots of morphine, although this makes me sleepy so can't take as much as I need.  Hence the constant pain.  It does get me down sometimes but I am still so very grateful to be alive.

I do need both hips replacing but the surgeon wanted to wait a few years as I am young.  You can only have 2 new hips on each leg and they only last 10-15years each.  However after lots of thinking I have decided I would rather be in a wheelchair at the age of 60 and mobile now!  My transplant consultant has been very supportive and has asked the ortho surgeon to see me again soon and fast track the procedure on my right hip ( that is the worst), so we will see what happens.

It is another hurdle to climb but I don't see it as bad.  It is just my mobility, I don't say that lightly, but  the transplant was so much bigger.  I know this will be tough but at least I am alive,

Recently, in October I had more stress and upset when my partner and I broke up, which was out of the blue and so heartbreaking given all we had been through. But l have this second chance at life so I need to live it as best I can and that is what I am trying to do now.

I must mention that I am astounded by the number of people all over the world who have read my blog and contacted me.  I hope my rumblings help someone.  Everyone's journeys are different but if I can help one person it is worthwhile....so watch this space for the next random instalment.  I think I am due some good luck now so hopefully 2014 will be the start of that.

My wonderful friends and family have been amazing as every and carry me through the bad times.  I will forever be indebted to them.

....and I'm feeling gooooooood.....

Well I just read that last post and it seems like a different person writing it. It is only 4 months later now but I feel so good!

I think it is because my progression is rapid now and each day makes a huge difference. I now feel very positive and happy. I suppose I should do a general update:

My bloods are great as are my bone marrow biopsies which show 100% donor cells and chimerism. The doctors call it a fully transplanted marrow! Woop!

I've had a few small battles which are that it has been confirmed that my ovaries are completely inactive. This is obviously sad news but I was expecting it and feel that I have dealt ith that as best I can in my mind over the last few years. The negative side of this is the menopause and the awful symptoms I was having, mostly the constant crying! I am now on HRT and I can honestly say it is amazing. I don't have any of those symptoms anymore and feel like a big black cloud has been lifted from my head.
The other not so good thing is the sore muscles/aches I have. They can be very painful but my Osteo things it is temporary. Docs are sending me for a dexa scan to check my bones but they do that for transplant patients anyway. If they have lost density they'll give me a tablet to take, so not too bad plus the HRT is obviously there to help this too.

So basically I am just getting on with life now. I am doing a dressmaking course, 2hrs on a Thursday evening which I love and I am starting a certificate in fundraising course to expand my skills for work.

I am also getting fitter and am doing weight watchers to lose this excess weight I've put on over the last 15months.

All positive things I think. I made the decision a while ago that I don't want to be sad and down anymore and think that I am going through this horrendous nightmare. The truth is now that I have been through it, I've come out the other side and that is just wonderful really.

It is time to move on, which is what I have been doing, even to the extent of de-cluttering my wardrobe and house! It feels good and feel good. i will never forget or lose sight of what I've been through and i know i am still recovering and have to take tablets and have check ups etc for years. However I am looking forward now and I can agree with the doctors and say I am we'll and able to move on.

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....