Doing It All Wrong

For those of you who are interested, the ghastly woman from the removal firm is not getting our business. The quote is significantly higher than that of the other company. I had so many texts and messages on Facebook imploring me not to give her our business, it made me smile. Things have been tougher this week, though. The side effects from Kadcyla don’t really go away. Or maybe it’s the peripheral neuropathy. Or the fibromyalgia. But something is causing me a lot of pain in my right arm and shoulder, to the extent that it wakes me up at night and stops me sleeping. I am reluctant to indulge in a lot of oramorph because, well, I just am, but this week makes it a bit of a necessity. The other cloud on the horizon is the pain in  my feet. This is almost certainly down to the peripheral neuropathy and the reflexologist who treats me on Friday tells me I have bruises on the soles of my feet. No wonder they hurt. This is very vexing as I have lots of things to do, mainly Throwing Things Away and pain in my feet makes it difficult to do anything except sit on the sofa with a wheatbag round my neck. What an attractive picture I paint.

On Saturday we have a spate of Throwing Things Away, supervised by Mr Mason jnr, during which we find editions of The Times in which the births of our 2 sprongs are announced, many old photographs and a couple of pairs of toddler’s plastic pants. We manage to rid ourselves of a lot of Star Wars toys, a huge collection of Brio and a lot of hi-fi equipment. The plastic pants go to the tip. (I can tell you which one if you want to go and rummage for them). I doubt plastic pants as such exist any more, technology in the pants department being what it is.

Having done so well in the throwing out department, I have a bit of a wobble on Sunday. I want to know the answer to unanswerable questions such as “How long have I got?” Being a lifelong planner, not knowing the answer to this kind of question is hard. Although I appreciate the impossibility of knowing the answers, I still yearn to know them  – as long as they are favourable, of course. At this point, the only people who truly understand what is going on in my head are other women in the same position – those also facing mortality and without prospect of a cure. Fortunately I am privileged to know such women and they send me messages which make me cry but also help to sort my head out. I suspect some of the wobble is due to trawling through the house contents and the memories things bring back and also the idea of leaving our home of 27 years and the city where we have lived for nearly 40 years. Don’t get me wrong, moving to a rural location is exactly what we want to do and I am sure it will be fantastic but it’s still a wrench to move away from somewhere so familiar.

On Monday I manage to speak to my cancer nurse specialist and she tells me I have been Doing It All Wrong. I have been cautious in my application of oromorph but apparently, I am taking too little to do me any good and I should be taking more. This is strangely comforting in that I am hopeful of a decent night’s sleep if I take it at the rate she is suggesting. This week I am back with the oncologist to see what she thinks of the side effects (if side effects they are) and also to have my third dose of Kadcyla – nearly £6,500 worth of drugs alone. A friend who has had around 16 doses of Kadcyla tells me her side effects grew less intrusive and intense as the course of treatment progressed. I am hoping this will be the same for me. Following the NHS review of drugs in the Cancer Drugs Fund, Kadcyla was not one of those removed due to excessive cost. This is reassuring for me but I still feel for those whose hope has just been deleted.

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