Yesterday was a lot of information to take in, I had a meeting with my case consultant and my specialist nurse, finally raised all the lifestyle and safety stuff that I'd wanted spelt out for me.
The first thing I spoke to Jill (my specialist nurse) about was my parents. Obviously I want them to be involved in everything, otherwise they're just going to worry and with all the good will in the world I don't think they would trust me 100% trust me to tell them absolutely everything. So Jill says she can do regular phone appointments with my parents and let them know everything that's going on, I think that would put their minds at ease to have a direct line to somebody like that. I don't want to have to worry about them worrying if you see what you mean! Plus Jill said that Jenny (my consultant) could always ring them now and then to let them know exactly how treatments going as well. So that was all positive.
What else... I spoke to her a lot about lifestyle stuff and exactly how strict I'm going to have to be about going out in to crowded places and all that kind of thing. To be honest I knew what she was going to say, I just really needed it spelt out for me. In fairness she did say that if I wanted to plan a trip or a day out I should just keep an eye on my blood counts and see how I feel but for the most part it was pretty much a resounding 'you cannot take part in social situations'.... Now I'm 21. I don't go out loads. But my age group goes out to clubs, bars and gigs. To be fair, out of all of me and my mates I probably go out the least and I had been starting to get real bored of going out to the same shitty clubs in Bristol... but still, to be told point blank how careful and aware you've got to be about it was pretty devastating.
With all my best mates spread across the country at different Uni's I'm pretty gutted that I don't have the freedom to just jump in the car and go see them whenever I want, primarily because I can't be too far from the hospital... I'm not looking forward to saying to people "sorry I can't do that... I have no immune system", that's gonna sound great..
Even just thinking what I'm going to do when my parents come down today is difficult, I'm not really supposed to go to the cinema, though if it was a quiet showing it would probably be fairly safe.
I did ask her about gigging and that, obviously going all the way to Brighton to do gigs is pretty much out of the question (gutted...) but I think again if I keep an eye on my counts and I'm feeling good there's no reason we couldn't keep gigging now and then. Might have to skip the sound check and just turn up for the gig, get George and Ben to set everything up... be a fucking pain in the ass but better than giving it all up surely.
I mentioned exercise as well, Jill really just told me to do whatever I want, obviously I'm going to be knackered a fair bit, so just do what you can.
So after talking to Jill I got to speak to Jenny about the next stage of my treatment. Although it is all pretty dependent on the results of my bone marrow test at the end of this cycle, it looks like I'm going to be in hospital every single day. Monday's will be a 4 hour drip and an intrathecal... which is a quite a lot, but then the rest of the week is just quick injections so hopefully overall I'll be spending less time in the hospital overall. Looks like I'll be off the steroids fairly soon as well, which is a relief because I hate not being able to sleep properly.
At the moment it's looking like I'm not going to need the bone marrow transplant, although really it depends on the results of the MRD bone marrow test at the end of this regime. I'm really hoping I don't need it, it would definitely be a weight off my mind.
Also I've got somebody coming to talk to me about Radiotherapy, which is likely to start after the second regime of treatment. I'm pretty worried about that, to be honest, mainly because I know nothing about it I suppose but still it just sounds a hell of a lot scarier than being pumped full of drugs.
So that's where I'm at really, it was a lot to take in, and a lot of it is pretty shocking. I think I'd partly kidded myself that I was going to be able to swan in to hospital a few hours a week, have some drugs, feel a bit shit now and then, and eventually get better. Lot to take on board.
FormerMember
Hi Will, good to hear from you and to read that whilst not all is rosy you are, as ever, being positive and actually very logical in your thinking. My brither went out and about at times, he did not have the same type of leukaemia, but he did watch his bloods and actually the hospital also told advised when it was a 'preferred' time to venture out - on one occasion he went othe Trafford Centre so a fairly busy place - and then when he was not so good, he stayed at home. I am sure you will find though that you will be pleased to have some peace and quiet at home after a few hospital visits. I am sure you will sus when you can do what!
Once again, I can only stand back in awe at the way you have handled what has been thrown at you recently.
BTW what happened when you say your Student Welfare person? Was there an acceptable outcome?
