Well my lovely bloglets,
I’ve got a really big decision to make. Well, at least I’m pretty sure I need to make the decision; that’s not already made. There might be another option, going by recent history it won’t be better. It was a bombshell that blindsided me a bit. A lot. Spent most of Monday in a bit of a daze. So unexpected. My gut reaction was ‘thank god and do it’, but then my brain kicked in. It would mean taking a pause from life. Just as my business is really beginning to pick up…. I would become a ‘normal’ cancer patient. Is this what I want?
I had my check up on Monday and was talking to my consultant about my fatigue and how debilitating it is. I’m trying to get 11 hours sleep a night. And I still feel fucked by lunchtime the next day. It’s not meant to be like this. Is it? I don’t know. What’s ‘normal’ tiredness? I’ve lost touch with what is right and wrong. I’ve felt like this for so long and it’s getting progressively worse. And I don’t think that’s normal.
And then I think of other people who have chronic fatigue and chronic fatigue syndrome and they can’t get out of bed, so then I think, well I’m ok then. I get out of bed. I function. Well, just about. I go to meetings and see clients. I can look after myself. I can cook and clean and tidy. So maybe I think I’m worse than I am. But then the way my head and body feels. It can’t be normal. I feel so heavy. I feel like I’ve been punched in the face. My head aches. I fuel myself with caffeine and don’t stop eating. I don’t really get anything done as I can’t focus. I cry. I eat eggs on toast as I don’t have the energy to cook. Or go to the shop. I have to sit all day. And then I walk as fast as I can when I have to walk, so it’s over as quickly as possible. I don’t really have a social life. I managed to see a friend earlier in the week as we met near where I live so I could mentally deal with meeting up.
So on Monday when telling my consultant that I need around 11 hours sleep and she looked through my file and said to me. Do you want a bone marrow transplant?
What. The. Fuck. Fuck. This is big. This is huge. This is almost too much to deal with. Shit.
Do I?
The reason is because I am on pill chemo I get progressively worse. I get given a break and I feel good and then my leukaemic rate goes up so I have to go back on it and I’m ok. And I just get worse and worse and worse. My quality of life is pretty fucking awful. I either work or see friends. I can’t do both. I get into bed around 8pm. This is not a sustainable way to live for the rest of my life. I’m 32. It’s not meant to be like this.
So do I want a bone marrow transplant? I think I do. A cure. To be cancer free. Something I never thought could happen. No longer a cancer kid. It’s been with me for 10 years. Maybe it’s now time to say goodbye. It would mean I don’t have to tell guys about it which puts them off. It means I don’t have to get to a place where I am allowed a year off treatment to have a baby. It means I’m not fucking exhausted all the time. It means I’m not worried about how much sleep I will get that night and the impact it will have on me the next day. It means. Well. It means I get my life back.
The bad side. Well. It could kill me. Or rather an infection could when I have no immunity. I need to find a donor who is a good enough match. I could have all sorts of side effects from it. Serious damage could be done to my body. A life of pain. And of course. A life of post-transplant fatigue. Do I want this? No.
The transplant process is around a year. I would be living in hospital for some of it. I would have to pause my business for a while. It could be for a year, as in the beginning, I would probably be ok to carry on working. Not when my hair falls out. Not when I become ‘a cancer patient’ and certainly not when I’m living in hospital. Will that damage it? Will all the work over the last 2 and a half years disappear?
And I feel a little bit like a failure. With all my knowledge, why haven’t I been able to ‘fix’ myself? Will people judge me? Will they think, why should I see her? Spend my money seeing her to help my health when she couldn’t help herself?
So, do I want a transplant? I think I do. It’s fucking terrifying.
I asked my consultant if she would do it and she said yes. This gives me confidence. I trust her implicitly. With my life.
I would be doing it as a ‘healthy’ person rather than an ‘ill’ one. My body would be in a better place to go through it. I have thought about the ‘what ifs’ of a bone transplant and if I had had one over the last 10 year. Would my life be better? Well now, I have the chance to find out.
I have one more pill chemo to try if I want to. The problem is, I normally feel ok to begin with. The fatigue is accumulative. And if I do this, I want to start as soon as I can.
I’m on a 4 week chemo break at the moment so hopefully by this coming Monday I will feel better. Back to normal. And when I do, I will truly know if it’s the right thing to do.
I can’t have the rest of my life like this. It’s unbearable.
So do I want a bone marrow transplant?
I think I do.
I will need all my angels with me for this one.
XXX
