I’m having a fibromyalgia flare up. The pain and the exhaustion seem to stem from this rather than the chemo and radiotherapy. I could easily sleep 12 hours a day and every little bit of me hurts so I’ve diagnosed myself and decided this is what it is. So what’s the remedy? Some trashy tv and very poor daytime movies have helped. I’ve developed a raging sugar craving which I’m trying hard to ignore but that’s very difficult. The whole sugar question is also an interesting one. Sugar feeds cancer, this we know. Sugar is also not good for you, particularly in larger quantities. Fruit and some vegetables obviously have sugar in them but some of my cancer chums even steer away from those. Fruit would always be my first port of call and I really enjoy it but I feel conflicted by the amount of information there is out there about diet in cancer recovery. Ooops. I start writing about Fibro and soon am back on the cancer track. There really is no getting away from it. But soon I am going to see the Physiotherapist who will provide me with some kind of exercise and stretching regime and then a visit to the Pain Clinic to see how I can control it without recourse to Amazonian quantities of drugs. Unless it’s another kind of Pain Clinic altogether and will be full of people attempting to give me pain. If that is the case, I think I may have to retaliate and try and deliver the kind of pain I feel. With my tattoo sleeve, I feel I could do it.
Monday will see me at the Rarer Cancers Conference. Apart from hearing about all sorts of stuff (I can’t imagine what), I will get to speak to an Advocate to help me talk to my Oncologist about my kind of cancer. Why would you need that? I hear you say. Well, when I was originally diagnosed with cancer, I was diagnosed with Inflammatory Breast Cancer. IBC. It’s rare and aggressive. Very aggressive. After a few doses of chemotherapy, at some point I got hold of my notes and had a little look through them. The IBC at the beginning was still there but later on, it was talked about as Invasive Ductal Cancer. IDC is a very different fish to IBC. IBC and IDC have the same pathological origin (or so I am told) but the point that worries me is that their follow up is very different. IBC cannot be seen on a mammogram and yet that is something I have already been given. Hmmm. Not good. IDC is less aggressive and can usually be seen on a mammogram. Are you following me here? So the conference has come at an amazingly good time as I should be highly educated on IBC follow up by the time I see the new Oncologist. My week is interspersed with hospital appointments (Echocardiogram, Oncologist) and groups at Maggie’s with a meeting at Southampton General thrown in for good measure. That pretty much takes up my whole week and that is the general flavour of my life at the moment. It’s ragbag and disconnected but I kind of like that. I don’t want to be back in the full-time rat race. I still dream about work. I dream about one particular line manager I had (and some of you will know who this is) who bullied me mercilessly, mostly due to the fact that she had spewed so much bullshit in order to get employed that she felt threatened by anyone who was vaguely competent. She undermined me determinedly, sabotaging my work and being defensive. It was a horrible time and the fact that I still dream about it shows how deeply ingrained it is on my psyche. So I am in no hurry to get back to that and, to be honest, still feel way off being ready for work. I know I am lucky. I know other friends who have to go back to work after cancer simply because of economics and I take my hat off to them. No doubt in their shoes I would do the same but I am grateful that I’m not in that position. And so time for bed, I think. Tomorrow I am meeting with Will who is doing the website for Annabel’s Angels and I have to write for that. If you’re unaware of AA, please take a look at the website – http://www.annabelsangels.co.uk and see what we’re up to. That’ll keep me busy.
Oh dear Shelley, life’s a sod isn’t it! Good luck with your visit to the Oncologist, hope you get the answers you want. Just take it steady and look after yourself. Take care, Mo.
Thanks, Mo. It will all sort itself out and I’m lucky I can get good advice before I see the new oncologist. Hope your cruising went well! Say Hi to Jim xx