After my last clinic appointment I'm down to taking 5 different medications.... instead of about 15. I'm off all the steroids, not taking any of the magnesium or potassium supplements and soon they're going to start taking down my immune suppression medicine which means my immune system should be able to start fighting for itself and get rid of the virus' I have once and for all. Yes I've still got the CMV and Epstein-Barr virus, but the virus counts are very low and once the immune suppression meds start to come down they'll, hopefully, vanish on their own.
I went in to hospital last Monday, normally I have blood taken, wait ages, see a Doctor, tell them there's nothing wrong, then we leave hours later. This time they just took the blood, I filled out a form to say there was nothing I wanted to see a Doctor about and that was that, back home in time for tea and crumpets. Obviously a good sign that they're happy with the way every thing's going, still it feels weird moving on to this stage, a little disconcerting, you feel like you're really being cut loose but it's definitely a good thing.
So how's the coming down off the steroids going? Alright, the insomnia's still really wrecking me, coupled with the fact I'm alone a lot of the day at the moment with very little to do it can really get you down. For instance having been awake now since 5am, with everybody else asleep I start to feel pretty edgy and anxious. Same when every one's at work or Uni and I'm stuck in the house, still diazapam and the relaxation exercises help and I'll be back at University fairly soon working my ass off to get my degree anyway. Another thing I'm a little anxious about, but that is another three weeks away and if I look at where I was three weeks ago... I've come a long way alright, I think by the time Uni really starts I'll be ready for it. It's going to take a lot of getting used to, but I'll manage.
I was thinking back to when we had to make the decision whether to go for a Bone Marrow Transplant or just go the chemotherapy route and I definitely think we should have been made more aware of the recovery process after the transplant. I don't regret the transplant at all but if I didn't have my girlfriend and my family to support me through the recovery it just wouldn't be possible, if I had a teenager or young adult going through this kind of recovery without the right support I'd be terrified they'd self-harm or worse. I think I might try and volunteer at the hospital when I feel up to it, if they'll let me, see if they'd want somebody who could talk to people about the experience. I'd never want to put anyone off it, it's saved my life but the at the end of the day this stage was never really talked about and it's been the hardest thing I've ever been through.
FormerMember
I'm glad you are doing so well, and I wish you a much easier time getting your degree than you have been through already. What is it again that you will be studying?
I think you have made a very good point about the recovery process from the bone marrow transplant. Just having someone who has come through it telling you to hang on in there must be a great boost to someone feeling very down and wondering why they don't feel better straightaway. I hope you do write a practical supportive guide for other patients going through it all.
Hi Will - as always good to hear from you! It must be strange now your girlfriend is back at school and as you say you are at home 'alone' more. Is there anything you can do wrt getting ready for Uni, perhaps meeting up with tutors to update them, do they have the equivalent of an 'Occupational Health' unit at the Uni, and if so (and not already done) might it be worth touching base with the medical team there ? I genuinely feel due consideration should be given to what you have gone through when it comes to exams, i.e. a couple of marks short of a First, (high 2:1) should equal a first!! It is a huge achievement to have gone through what you have and still keep your education on course. Hats off to you! It is always difficult when you have time on your hands and no 'plans' as such to fill that time, and yes you are right it does cause the mind to wander. Maybe you could document your experiences? I know you were given the pros and cons of the transplant and the risks, but as you say the information was lacking on the recovery front. It is a very personal thing, but perhaps your experience could help others. I am sure there are others or will be that have been through the same whilst at Uni, and perhaps as you say without family to support them. My brother's story is a little different, AML, but after his transplant he did go out to people about to go through what he did, I think it was organised through his local leukaemia support group. He had a few people on 'his books' he went to see and he said it was mutually very much a worthwhile exercise. As you say perhaps the Uni could help here?
I am sure follow ups will continue for a while, so you are not 'loose' yet, and I am sure the door will always be ajar for you. Let's hope this is the toughest thing you ever have to face, you have done so well, your parents, girlfriend and friends have every right to feel very proud of you.
I wish you well, especially over the next couple of more 'lonely' weeks, and all the very best for the new Uni term!
