In my previous post I think I got a bit too excited about the good news (no cancer), and explain how i feel about the news I have now got to deal with. Inspired by Suzanara’s comment here is a list of the varied emotions I go through throughout the day!
Relief at the knowledge there are no cancer cells. That the doctors feel they can treat the diagnosis i have. That the transplant wasn’t for nothing. That I won’t become a statistic that the NHS can use to argue that second transplants are not worthwhile.
About my prognosis. As I said in my previous post the bone marrow biopsy showed that my cellularity in my bone marrow had dropped quite significantly. This was something that the doctors were not expecting to of happened. This is why I can’t have the more simple and less invasive IVIG treatment. The situation I’m in suggests with the two donors battling it out it has had a pretty huge affect on my bone marrow, and pretty much I am at risk of losing my graft. Now ok the cancer cells haven’t come back, but if this continued and my cellularity reduced further I wouldn’t be able to produce my own blood cells. The graft would have failed, and I’m not sure there would be many options for me without further agreed funding!
About being guinea pig. I believe I am right in saying that this has only happened to very few patients, so I am one of the first to have this treatment. I’ve just got to put all my faith in the doctors knowledge to hope this will work, there most definitely aren’t any statistics we can consult, I will be making them!!
About having the treatment. When I previously had ATG I got on with it ok. My main complaint was being hooked up to a machine for 18 hours a day, a few nasty fevers, getting moon face from the steroids, and getting fat due to the steroids. But generally I wasn’t too bad with the treatment…… but I was young (or younger, 12 years younger!!) Maybe it will be different this time. Other patients I know have had horrific side effects from ATG and felt worse than they did on chemo, so who knows!?!?! Also I only had partial response to this treatment for my Aplastic Anaemia, so what if it doesn’t work?!?!
About getting an infection. As I am and with the treatment my immune system will be wiped out so I will be incredibly susceptible to infections. So far I have managed to fight all infections thrown at me, but it scares me how quickly things get out of control.
About the availability of DLI. My consultants are now checking with Anthony Nolan to see if there is any DLI already stored or if we have to go back to the donor to ask for more. If we have to go back to the donor to ask for more then the donor has the right to decline. Then what position am i in?? If we kill of all my t-cells then what happens if we can’t replace them??
That yet again I’m putting my life on hold.
Currently I am now waiting on a timeline from the doctors. I know I will be in hospital for 2/3 weeks but I have no clue when. As soon as they have things sorted then I will be put on the waiting list for a bed, this could be any day/time! Usually you have to get down that day as well else you miss losing the bed! So this week I will probably pack my hospital bag and it will have to sit there until its time to go in.
This also interferes with making plans. Can I book to go to an event next week or would I already be going in? Will I be able to make the events I have already booked or do I need to cancel them? And the trouble is I won’t be sure of the answer until likely the day of or before the event, which is usually too late to book/cancel.
I thought the 2nd transplant would be my last lot of full treatment (minus infections) but now I’ve got to psych myself up for another long stay. I thought I was coming to the end, but now it feels like I’m back towards the beginning (2 steps forward 1.5 steps back type thing) .
This isn’t just 2/3 weeks in hospital and then done. This will again take months of recovery. Time spent waiting for my blood counts to come back up again. Time to recovery some of my strength from the duration in hospital (even if I make a huge effort to move around, you are still hardly active at all when confined to those little rooms). Time to feel like a normal person again.
12 years these bastard diseases have taken over my life…. 12 fucking years…… Yes ok I’ve not been bad the whole time, but I reckon at least a 3rd of that time has been restrained due to illness. I would love to just run away from it all!! Do the job i love, go out and enjoy myself, jet off on holidays without thinking about medication, take on responsibilities (mortgage, rent, pets) without having to think “what if I get sick again”.
To the staff at Kings and Peterborough hospital who are a great support at all times and have tried to magic up another solution. I know they have my back and its great to have trust in them 🙂
So yeah… hope that explains a little bit of what i’m going through at the moment…. I’m sure I have missed stuff out. But hows that for mixed emotions
(Also frustration for my family and friends who have to go through this with me, house me, feed me and do my laundry!!)