Clicking “like” or “share” on the dreaded FB is easy, without first considering the consequences. Especially when you’re doing it at 3 o’clock in the morning. You read an article (well to be honest I speed read it) and immediately recognised the phrases the author highlighted. In my defence I had been in bed 7 hours, and was still unable to sleep due to being unable to get comfortable. Note here that I didn’t say “due to being in pain”, I’m trying to convince myself I’m not, a bit of PMA again. It might work.
The article in question is here should you wish to familiarise yourself with it:
I immediately empathised with the various comments. I’ve heard them all. My own particular bug bear is “you’re looking well“, when I know I’m not, my face is drawn and pale, and creases with every painful movement of my body, but hey, thanks for the thought. Nobody seems to comment on how well I’m looking when I’m feeling great. But what are we looking for. Certainly not sympathy, certainly not to be patronised. It’s something that permanently disabled people have to put up with every day of their life. Those of us with (hopefully) a temporary illness only have a taste of what it’s really like. I, or to be precise, the author of the article, was quickly shouted down by a few of those I had shared said article with. Strangely enough I found myself agreeing with most of the criticism subsequently aimed at the author, and because I also ‘liked’ it, myself. It’s far better that someone make a clumsy comment, than say nothing at all. I’ve had people ignore the fact that I’ve got cancer, which can be deeply embarrassing if you allow yourself to be offended by their ignorance or embarrassment. The same as people crossing the road in order to avoid the subject raising it’s ugly head. I’ve also had many inappropriate comments that have made me gasp in amazement. Gasping only because the person making the comments have clearly not thought about the illness, or how their comments were so inappropriate, even if they are well meaning.
Being on the receiving end, it did make me re-think (with a little help from Nick) how I respond to how others deal with my illness. Despite the fact that I blog about it, I don’t particularly feel the need to share it with others unless they choose to do so. I don’t force the 400 – 500 a week who regularly read the blog, and I suspect you are not the one’s who fall into the category referred to here. The author of the Guardian article did try to redeem herself at the end of her piece, but perhaps if she had approached the subject from a different angle in the first place, it might of have avoided being seen as sensationalist. It’s disappointing that she chose to highlight the negative aspects when it could so easily have been approached in a more positive and helpful way. I’m not an expert cancer patient as yet, I’m just as much to blame for being offended at other peoples comments as they are for their ineptness. I hope I’m learning, and I hope I’m learning not to “like” something just for the sake of it.
Boss nurse came to visit again yesterday, and I think I got a good report this time. The new dressing she prescribed on her last visit seem to be working, the wound is getting smaller, even if it is only by millimetres. My report shows it‘s now decreased to 1.4cm. Macmillan nurse also checked in to review my pain discomfort. As I’m on the maximum background pain relief she’s decided to opt for something stronger to replace the Targinact. I feel once I can get this under control I can resume an almost normal life. Normal that is until chemotherapy starts. I’m back at The Christie on Thursday to see what they have in store for me and when treatment will begin. I’ll have my diary with me, the main aim being to work chemo around the festivals I’ve got booked for the summer. I want to ensure that my ’good weeks’ coincide with weekends away. If that involves shifting the treatment around a little, I’m sure the benefits of a good weekend away will outweigh any disadvantages. I’m going to do this on my terms, I’m determined to be the one in control, not cancer.