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...