I have been thinking about what to write over the last couple of days. Well actually the last week or so. I was going to talk about the anger and frustration that has been bubbling up to the surface since I started seeing my new consultant and he made decisions that could have been made before. Why didn’t my old consultant be more decisive and take more action? I have, since Friday (it’s now Sunday) been reflecting on this quite a lot. Sometimes it’s a real arse having a mind that automatically looks at both sides of the story. It means that I’m never fully on my side as I then look at the alternatives and how the other person may have been feeling and why they did what they did etc. This is probably a great tool to have as a therapist and as a critical friend to my course buddies, but when I want to be truly selfish for myself, to feel upset and angry and let down, I always water it down by thinking about the person that has triggered that particular state. Maybe it’s also a self-protection mechanism as well. By looking at the other side, I can’t slump and dwell because I also see the other side. Or maybe it’s just because I’m the middle child. The middle of the see-saw going one way and then the next. Understanding both sides of the equation.
I had, until Friday, been angry and upset at my old consultant, and now, maybe not so much. At my last check up just over two weeks ago I was told to phone the clinical nurse specialist in two weeks to find out what my Leukaemic rate is after being off the drugs for a month (at that point). I was crushed to find out it has risen from 0.009% to 0.022%. Maybe only small numbers, but a massive amount in the space of 4 weeks. What does this mean? Well that the drugs were doing their job and well which is a good thing but also, does it mean I will be able to come off them ever? I’ve been really good with my diet, avoiding sugar as much as possible. And whilst I have had a few slip ups, no more than once a week, if that, over the last 6 weeks. I do feel a bit like what was the point. My brain wants me to be free of treatment, I can’t tell you what it’s been like over the last 6 weeks to feel alive again, and now what. I find out more tomorrow about when to start taking them again and at what dosage. I might be put back on 40mg instead of 50mg to see if that helps my fatigue. Maybe this is why my old consultant didn’t take me off the drugs or lower the dosage because of this happening. I knew at my last check up that I would have to go back on them, but I’m shocked at how much the leukaemic rate has risen. I feel like my body has failed me and doesn’t want to get better. I’ve been in such a good place, even with this horrible virus that is going around, and now I feel. Well I don’t truly know. Upset, angry, disappointed, frustrated? Yes all of these. Do I also now feel resigned? Should I give up the hope of coming off treatment and just accept that this is it. This is my life? I don’t know. I don’t like giving up. I’ve been fighting this battle – normally a phrase I hate when it’s in association with cancer. Oh he fought really hard and lost – such a tragedy. Or I fought and because I did it so well I won. Well f that. Everyone does their best with cancer and sometimes there is a good result and sometimes there isn’t and it’s got nothing to do with how hard they fought or didn’t. And here comes the other side of the argument… well in some cases this isn’t true if they continue to do things that are known to be detrimental to health like smoking etc.
I haven’t been fighting cancer for the last 6 years 9 months and 1 day. My battle has been the drugs. The cancer is fine, and hasn’t ever really made me feel ill. All the bad stuff is the drugs. Being intolerant to the first lot and these making me chronically tired. And I suppose, a little bit of a fight against the dormant Leukaemic cells within me. But I’m not angry at them, or don’t like them. Not consciously anyway. They are a part of me and I love and accept them. I don’t see them as doing damage. They are there. But it is also because of them that I am on the drugs. It’s a bit of a mess really.
I am so thrilled that my consultant took me off the drugs and gave me a holiday, but I suppose it’s now time to get back to real life. I am hopeful that I won’t be quite so affected by them after having this break, but I am wary. I want to be positive and to think that I will be fine, however I also have memories of the past and these are hard to erase and forget.
I will, as I have always done, carry on.
With love and smiles,
A slightly apprehensive Me XXX