Disclaimer: If you are about to undertake Chemo perhaps have someone vet this blog post before you read it.
I think all these will carry the above disclaimer….
Chemo has a bad reputation. Sadly, unlike the girl you went to school with who just happened to develop quicker than everyone else, it’s deserved.
I’m finding it a little hard to gather my thoughts on the subject and be funny. So I’m writing some vignettes about my chemo time; just little stories to keep us all going, time has made them funnier but they might be strangely useful too.
I think I finally gave up around the point in the visualisation exercise where the whimsical, soft voiced woman asked me to “feel the wind in my hair”.
It was then that I decided I wanted to flunk out of Chemo School.
To be fair to both the Nurses running the class and myself, a series of unfortunate incidents meant I was caught entirely off guard when I found myself at the door of an airless and windowless room in the Oncology Department.
This for starters seemed strange to me; any building to do with Cancer, is always bright and airy. I’d go so far as to say that the bleaker the illness, the brighter and lighter, the space (in my limited experience). If windows are not forth coming, weirdly cheery wall stickers may be used but mostly cancer folks are guaranteed some windows.
I suspect it’s because no hospital or political party will ever get a kicking for spending resources on the Cancer Wing. I know this because if you read the UK Parties manifestos at the moment most, if not all, mention beating / leading / ruling or in some other way whooping Cancer’s Ass. Cancer and/or Dementia may win someone an election (or not).
So yes, Cancer is the Switzerland of diseases (except for Smoking induced Lung Cancer which causes much controversy – it is possibly the North Korea of cancers, but that’s another story).
The unfortunate incidents are boring really, serving only as a reminder, as to why you need to chase up appointments. It turned out, that someone thought I was a few appointments ahead of where I actually was, on the Chemo pathway. A bit like when that person told you what happened at the end of the nail-biting series you were two episodes shy of completing. Only possibly worse, though I don’t want to judge, people feel very strongly about Broadchurch.
It is understandable that occasionally these situations occur, especially when you consider the pressure everyone involved in our NHS is under. However, it is also not the funnest situation to be in. On my Cancer journey thus far, I’d give it a 4 – where 1 is finding out I had cancer and 10 is finishing treatment.
Anyway all of this is leading us very far away from Chemo School and meditation. Suffice to say, to my knowledge nobody puts Cancer in the Basement. I was slightly intrigued then, when I was ushered down the stairs, closely flanked by my beloved men. Though, I thought I was probably going to have another scan. Scans are kept in the basement.
The door swung open to reveal a room full of grey, shell-shocked types, instantly recognisable as the newly diagnosed. There were a few loved ones too but only one per person, my two was now making me feel, as close as I’ll ever come, to a famous type with an entourage.
We were late so we squished into the room still none the wiser as to why, exactly, we were there. It became apparent all too quickly, that this was Chemo School.
We would be ‘vaguely’ running over the ups and downs of Chemo; ‘vaguely’ because while I didn’t take a straw poll, I’m pretty sure my fellow students (both male and female) were not all Breast Cancer People.
Specifics were shied away from; too many Chemo types, too many possible side effects. The dreaded phrase “including but not limited to” was used. Be wary of this phrase. Used when there are SO many side effects. It is often quoted by a thoughtful looking medical professional, normally when you show them some bit of your anatomy that is dropping off / turning blue / not behaving like usual. “Hmm, yes that’s not unheard of” comes the response “we normally just give you the headlines but it’s not limited to those symptoms”.
As would become sadly usual in the coming months; bowel movements, vomit capacity and all number of bodily fluids were touched upon. The tone used to broach these subjects irked me. In much the same way as the phrase “spend a penny” or “had an accident” irks me (both of which were also used, if I recall correctly). It’s an apologetic tone; the chin goes down, the eyes lowered, awkward shuffling. These are medical people for crying out loud; if you can’t say shit or poo, can we at least use faeces? I’m pretty sure that, is at least, in medical dictionaries.
(side note: A friend once told me that a nurse told her, that medical professionals are now not allowed to use the phrase – when referring to injections – “a little prick coming” and that “a little scratch” has to be used instead, for fear of offending!)
It was at this point in proceedings the elderly gentleman next to me started shifting uncomfortably.
Poor chap, things were about to get worse; “libido” was up next. Nothing specific, same apologetic tone, same airbrushing over the details. It would have been frustrating, I’d imagine, for anyone seeking actual advice and here comes the kicker; At each stage of this interminable process we were told several times that “Questions were welcomed”.
This got me on a number of levels
1) The delicate and embarrassed handling of these slightly fruity topics did not make me feel I could pop up a hand and ask a question related to my bodily functions or sex. I was in a room full of strangers and embarrassment breeds embarrassment. Also MR 80, sitting next to me had cancer, he did not need to die of a heart attack.
2) I WAS FLANKED BY MY DAD AND MY BOYFRIEND.
Now, I’m a 35-year-old woman; old enough to have sat through a few risqué and unexpected movie sex-scenes, while sitting with a parental. I’m mature enough to handle it reasonably comfortably.
I’m also mature enough to admit there are times when (shush) I’ve wanted to be perceived as alluring and sexy. At this moment in time, I was just about coming to terms with the butchering of my body, the weight gain and the loss of hair that would follow but it hadn’t happened yet. I STILL wanted to be seen as sexy by my boyfriend. It was important to hang on to this for as long as possible.
So under no circumstances could anything have induced me to put up my hand and ask about ANY of these topics.
The nurses seemed disheartened that no one was asking questions. I am a people pleaser but still I couldn’t bring myself to ask anything. Imagine! I mean where do these people think we are? Some beautifully open Nordic Country, at ease with nudity? We’re British for crying out loud!
I feel I need to mention at this stage, that this is not an attack on the NHS, the Nurses or the standard of care I received. I still Heart the NHS, big cheer for the NHS.
I do have to question the validity of this particular aspect of the process. To be fair it was a pilot scheme that was clearly in its early stages.
Dad would also point out here that unfortunately, I did know an awful lot about cancer and its treatments before all this; those who don’t may find it useful. Though I’d say a look at the Macmillan website would be just as informative.
My argument with this pilot scheme can be summarised in the following bullet points:
*Warn people what the class is about, make it optional, suggest you don’t come with an entourage, so you can ask the unsexy questions you want to know the answer to.
*If you are going insist people come and pay the hugely inflated parking fees, make the classes useful and specific. Putting us in a mixed gender / mixed cancer groups is not going to encourage the type of free and frank dialogue wanted by those running the group.
* When dealing with a room full of awkward, sick people and forcing them to meditate. Do some research, listen to the CD you’re using and perhaps pick the one that doesn’t assume the listeners have hair. Especially if they lost it via treatment. It will piss them off and not aid relaxation.
*Offer them a biscuit and a cup of tea, it’s just polite.
Don’t worry the Oncology Department know how I feel. I (politely) wrote the above down on the feedback form. If they couldn’t make it out on that, they’d have had a second chance with the clipboard I was leaning on. I made quite the indentation.