The pain clinic

Following on from my appointment with my new favourite doctor, Dr Berkowitz, he does everything he says and writes to my GP, also making appointments for me with a physiotherapist and at the pain clinic. I like the physiotherapist. She is quiet but thorough and carefully presses the fibro points which are so painful. She gives me Pilates exercises to help strengthen my core and says she will see me in a month to see how I am getting on. She prints out copies of the exercises and carefully writes extra tips down as she understands I won’t remember a word she has said once I leave.

Two days later, I am back at the hospital to go to the pain clinic. I asked my GP what a pain clinic involves and she denies it is about giving me pain but offers me exciting options like acupuncture or hydrotherapy. These I like the sound of. The Royal London Hospital for Integrated Medicine, formerly the London Homeopathic Hospital, is a strange place. Sited in Great Ormond Street, it feels more like a GP practice as it’s just so low key and is the most un-hospital-like hospital I have ever been in. Most people going in and out seem to be in wheelchairs or walking with sticks so I feel a little cheeky walking in unaided on my own two feet. The pain clinic is tucked away on the ground floor and when I find it, it appears to be one lady sitting at a computer in a very small room. It says ‘Pain Clinic’ over the door so I ask her if I’m in the right place. “Yes” she says and takes my name. “Please take a seat” she says, pointing to a couple of chairs outside her office. I wait patiently and shortly, a very pale man appears from behind her chair and calls me in. We squeeze behind her chair and I discover there are a couple of other offices around a corridor at the other end of her small office. Whoever designed the spacing was demented. I don’t get the name of this doctor and I struggle to determine where he is from by his accent. I think he is Easter European but could be wrong. He is very pasty, though, with a pudgy, doughy kind of face and little round glasses. He is also very, very serious. He asks me lots of questions about my condition and reads copious notes that have obviously been made about me. I am sitting there waiting for him to start talking about acupuncture, hydrotherapy and other lovely treatments but he goes for the one I have been hoping won’t feature on the list. The pain psychologist. I once read something about a pain psychologist who worked with a woman and enabled her to visualise her pain as a tiger beneath her bed. In this way she managed to deal with her pain without using so many painkillers and it gave her a sense of control. Damn. This is not what I want. I want someone to DO something to take away my pain, to dunk me in a swimming pool and swish me about a bit or stick pins in me. I don’t want to think about my pain as a bloody tiger. I sigh. At the moment I am seeing a specialist oncology psychologist and cannot, ethically, see two psychologists at the same time. I sense he is keen for me to finish with the caner person and get on with the tiger-taming psychologist. Being examined when you have fibromyalgia is always interesting as doctors always prod you, fully clothes, in order to see which bits hurt. There are a whole raft of points which people without fibromyalgia won’t respond to but people with fibro will yelp at if they are pressed, even lightly. The doctor goes through the obligatory prodding process and says he concurs with the diagnosis but that he sees me as a highly functioning person with fibro. He demonstrates the measure by holding his hands apart, waggling one hand as those who come in on their hands and knees or by wheelchair and waggling the other hand to show where I am. I almost feel embarrassed and rather sorry I am not more disabled. But pain is very much a personal thing and mine is as valid as anyone else’s, even if I am at one end of the spectrum. He is going to wait until I have finished with my cancer psychologist and then will fix me up with one of his own chaps. As I leave, he gives me his hand which is soft and slightly damp. His handshake is not firm and I wonder if I hurt him with mine. If I did, it wasn’t deliberate.

In defiance of all the advice, I go and sit in the tiny cafe and drink a diet Coke and eat a KitKat, surrounded on all sides by people with obvious disabilities. Standing up is the usual trial. My whole body has seized up and I feel about 101 as I creak to my feet. Following the physio’s advice of shuffling my feet about before I stand helps but makes me look bizarre. OK, more bizarre. I make my way back to the tube station slowly and carefully, wondering exactly when that tiger is going to pounce.

The no title blog

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 –  and see what we’re up to. That’ll keep me busy.