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Radiotherapy – Like being in Star Trek

IntrepidClassSickbay

The idea of radiotherapy to treat cancer goes back to 1934. I’m halfway through my treatment and there’s no particular problems; I just think it’s weird.

For three weeks I have to turn up daily for a 10-minute experience that is pure 1970s Star Trek. I’ve been told that the breast surgery, the chemotherapy and the other lot of surgery have already cleared my body of cancer and so this radiotherapy is just to be totally sure.

The principle seems to be to get my body in exactly the same position every day and then send x-ray type beams to attack the cells near the original site of the tumours. I am now very good at lying completely still and zoning out while a person each side pushes my naked fat overspill around and chants numbers and measurements. With my eyes closed, I appreciate the tone, accent and sound poetry that accompany this science. The best day was when I had a Welshman speaking on my right and an Irishman on my left. Once you are positioned correctly, they leave the room while you get zapped by the machine, which looks like an upside-down round glass and metal Habitat table.

My radiotherapists have been lovely; I was surprised that most so far have been men. The male professionalism that treats a half-naked female body in a detached, matter of fact way whilst at the same time talking warmly to you as a person is great and makes me feel happy. Like a crazy patient in love with her psychotherapist, I have wanted to take a cute radiotherapist home with me on more than one occasion.

Today, though was a really weird radiotherapy session. A different radiographer had put on a CD which played throughout the session. I’m all for using music to relax patients; a bit of Chinese music or Indonesian gamelan does the job, Mozart or Bach maybe or, at a pinch, some light jazz-funk instrumentals.

But the CD in question was ‘Love Ballads’. I lay there with my naked top half exposed, lights off and the machine buzzing and clicking whilst a couple of sexy anthems played. I think it might have been ‘Nights in White Satin’ and I was certainly glad when it reached an end. Afterwards, I got dressed to ‘You’ve Lost That Loving Feeling’ by the Righteous Brothers. Too right, I have lost that feeling; I’ve got one breast, a sad excuse for hair and virtually no energy, so, however lovely the radiotherapy men are, nights in white satin are out of the question.

Satinsheets

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Side Effects of Chemotherapy – Hair Loss

brush-with-hair

I had always wondered what I’d look like bald. In fact, I had considered doing charity head shaves on several occasions, so the initial news that my chemotherapy would result in hair loss was not as devastating as I know it is for some women. I liked my shoulder-length hair, but after more than 20 years with broadly the same style, I was excited to have a change.

Thinking that short hair falling out would be easier to deal with than long sections, I went to get my hair cut short.

“Like Judi Dench,” I told my hairdresser.March 5, 2006  Hollywood,Ca. Dame Judi Dench 78th Annual Academy Awards - Arrivals Held At The Kodak Theatre © Oskar / AFF-USA.COM

“No – you’ll look more like Emma Watson,” he retorted and persuaded me to have it dyed a bold coppery-red.emma watson

The outcome was great; everyone said the short cut suited me so much better than the long bob I had carted around for a quarter of a century. Another bonus was that I was about to save a fortune on haircare.

At chemotherapy, you are offered the ‘cold cap’ treatment. By making your head extremely cold during the infusion, the idea is that you might lose less hair. Most people say it doesn’t work, and I didn’t bother, but I have met a couple of women who did keep their hair through it.

After two weeks, nothing seemed to be falling out; I was starting to think that I had escaped. My teenage daughter groomed me like a monkey every night, seemingly disappointed as she pulled the brush through with no joy.

hairs

But by three weeks, hair was detaching itself with glee. If I put my hand to my head, about 100 hairs would come out like a little doll’s wig. After a bath or shower, there would be a thick carpet of red hair left behind. It got too much when every meal I served was garnished with at least a dozen hairs on each plate.

My hairdresser had already volunteered to shave my head any time if I wanted, so I trooped on down and sat through a rather surreal hour of different types of clippers and razors, hearty banter and the inevitable feelings of loss. Suddenly all the hairdressers in the building were commenting on what a great head-shape I had and how it suited me. Well I suppose you would do that, under the circumstances.

Four months later, I now only occasionally wake up in the morning thinking I h022240_DGR_MERINO_BEANIES_AW13_2_pave hair. My top item is a purple merino wool skull cap that I wear all the time; it’s designed for mountaineers and the like, but it has great temperature control. In winter, I’ve worn various woolly hats over the top, and have occasionally gone to the supermarket with a bald head and drawn-on eyebrows.

hat

I didn’t get a wig, because everyone in the know said it was itchy and hot, and the price was fairly off-putting. But now, I wish I had, just to have an extra option, or for a smart occasion where you want to blend in with the crowd.

Now it’s summer, I have tried scarves a few times but I don’t really like the feel or the look; I prefer to wear a cloche straw hat, the purple merino cap or go bald. My arms and legs are super smooth and, down below, I have a chemically-induced full Brazilian. I have found it grim with no eyelashes to catch tears nor eyebrows to catch any beads of forehead sweat. However, at long last my hair is starting to grow back. It’s white and I think I’m going to look like this little monkey before too long.monkey

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Side Effects of Chemotherapy – Taste and Smell Corruption

telephone operator

There’s a woman in my brain: an old-style telephone operator and for the past 20 weeks, she’s been deliberately misconnecting my tastebuds. Is that vanilla fondant encased in chocolate? No, that’s lard, you’re tasting. Belgian beer? Not at all; you must be drinking washing up liquid.

In the simplistic way that people try to define the scattergun effects of chemotherapy, this is often summed up as a ‘metallic taste’. Maybe that’s true for some drugs, but for me on FEC-T, I still experience a wide range of different tastes – it’s just that they are not the usual ones, due to that pesky woman.

I’m cured of my cake, chocolate and biscuit addiction. Nothing tastes sweet but you can certainly taste the cheap hydrogenated fat in such foods. A lot of people raved on about fresh pineapple, but the one I tried tasted of cucumber.

Strong and savoury has been the way for me, with cheese and pickle sandwiches being the favourite followed by anything with marmite on it. Curry has been interesting; I’ve eaten it for the scorching effect in the mouth more than the actual taste and conversely ice cream and yoghurt give a tingling sensation even if they taste of phlegm.

Drinkinapple & mangog water is the main thing that does taste metallic, and it has been hard to flush those drugs out by drinking enough. I have found that the only way to do it is by drinking Sainsbury’s Apple and Alphonso Mango Squash. Other brands are available but Asda’s was yucky. Where others have sworn by pineapple, mango has been my flavour.

Smell, though, has been all-round heightened and it’s an amazing smelling world! I can’t bear to actually drink coffee but it smells divine. I sniff chocolate rather than eating it and my nose perks up like a dog walking in the park as I smell every shrub, every flower I walk past. It does mean I also smell every rancid bin, every soggy lettuce leaf in the fridge and, worst of all. the pandemic disgusting umbelliferous plant known as Cow Parsley. which the whole of my outdoor world seems to stink of this week.

3. Cow parsley

Yep, taste and smell affected. Supposedly a minor side effect of chemotherapy, it can be powerful enough to change you into a dog.

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Side Effects of FEC Chemotherapy – Sickness

sick bowl

It’s great to believe in mind over matter. A nurse had told me that a positive mental attitude was the key to getting through chemotherapy. And I think it’s true – up to a point.

After my first dose of FEC, I started to have lurid alcopop red urine but otherwise felt fine for many many hours. I walked round the park and started to feel smug and strong because my positive attitude was helping me with any side effects. Still in the habit of a primary teacher, I designed and printed a colour-coded spreadsheet for all the medicines I had to take and had stocked the freezer with foods that teenagers can cook and eat. I was sorted.

But then I started to be sick; I won’t describe it because writing about it is too disgusting. But I was sick from 3pm until 1.30am when I had to go into hospital to have much stronger intravenous anti-sickness drugs. Instantly the sickness stopped but I had a difficult night in hospital struggling with a urine infection. I wonder how much those elephant-foot NHS cardboard pots cost because I used a lot of them one way or another.

Over the next 9 weeks I had two more infusions of FEC, but didn’t have any more actual sickness. This was because I had proved to the NHS that I needed the extra-strong sickness tablets that come in a gatefold sleeve like a fancy CD.

In fact one of the pictures below is ‘Small Craft on a Milk Sea’ – a gatefold set from Brian Eno (price £70), the other is Emend anti-sickness – a gatefold set from American drugs company Merck (price £52). Don’t confuse them now.

emend  brian_eno_7_0

NHS chit chat

Computer - generic

At work, people like to have a chat. As a patient sitting in a waiting room, it’s not great to listen to people chatting when they should be working.I had thought the NHS was getting a bit more professional at this, but you still find the exceptions.

I work in a primary school; it’s generally thought inappropriate to have ongoing chat between the adults once school has started. In the classroom, the most I’ll admit to doing is catching a colleague’s eye with a significant look when a child says something like:

“My mummy and daddy like to lie down together on our furry rug,”

And that sort of comment happens more than you would think.

But, based on just a few months of sitting in different waiting rooms, there doesn’t seem to be anything holding back the staff in the open plan reception areas from discussing all sorts. I wouldn’t mind if there was a bit of political debate or interesting facts to overhear. But no; it’s invariably mind-numbing dross.

Here’s the top ten conversation topics for receptionists and other staff in NHS waiting areas. 

  1. “Did you go out last night?”
  2. “You’ll never guess what John’s done now,”
  3. “I’m not sure what to have for tea,”
  4. “She’s done it again… what a bitch,”
  5. “That’s a lovely scarf,”
  6. “When’s your break?”
  7. “I’m fed up with that school,”
  8. “Did you see The Voice?”
  9. “I’ve booked my holiday at last,”
  10. “Had to take the dog to the vets,”

Sorry NHS – I don’t want to hear it, and I wouldn’t hear it if you said it in the staff room on your work break.

Waitingroom

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Mastectomy – one boob, one scar

incineration

My body, like everyone else’s, was never perfect. Aged 22, I worried about tummy-flab and being too short with massive feet. Thirty years later, I look at photographs of that time and wonder what I worried about.

I grew up 80% tomboy; I didn’t like developing breasts because it meant I couldn’t run so well; all that jiggling and overbalancing meant that I took to swimming and cycling as I got older. I liked the 80’s fashion for long skirts and Doc Martens, or those massive political T shirts that drowned your bosom with right-on phrases.

But, last November, by the time I had to have a left-side mastectomy, my fashion ideas had moved on to compensate for being over 50 but not feeling it. My clothes comprised tight t-shirts and jeans at home, and quite low cut dresses for work. Both looks were to prove a little difficult in the weeks after the operation.

Having decided that reconstruction was not for me, I trooped to M&S to buy post-mastectomy bras. These have little pockets to keep the fake-boob (aka prosthesis) in place. From the front, at a little distance, you wouldn’t be able to tell. However, under a tight T-shirt, it’s hard to get symmetry. The low cut dresses were also problematic; when you look down, there’s no cleavage – it just looks wrong. When I sat in a coffee bar and leaned on the table, my daughter sitting opposite said it was very obviously a falsie, and I don’t argue with the style-wisdom of teenagers.

So, out went 6 old low-cut dresses and a similar number of tops, and I’ve resolved to get higher necklines next time. Unless I get shoes so impossibly high that my boobs are too far up for anyone to see. As it is, whenever I meet someone who I haven’t seen for ages, it’s amusing to track their eye movements as you say,

“I’ve had a mastectomy.”

They have an inner struggle with their eyes going automatically to your chest, and their brain saying to them,

“Don’t look at her chest!”

The other question that everyone asks is,

“Was it a double mastectomy?”

And I’m never sure what the significance of this is. Maybe a double is so much worse? I’m not sure, because the asymmetry of a single scar seems more awkward to deal with than a double scar, but I’m not qualified to comment, really. Another game I’ve been playing recently is ‘which side is real?’, but not with everyone I meet, y’understand.

After 12 weeks, my puffy, amateurish-looking scar is starting to fade and sink down in quite a pleasing way, and I don’t mind how it looks. I am now contemplating beach wear. Do I go for something modest, high-cut with a prosthesis-pouch? or a mastectomy swimsuit like the one pictured here to show off the scar!

NB This is not a picture of me. I have less hair and I don’t often wear lipstick.

monokini  http://www.medicaldaily.com/breast-cancer-survivors-meet-monokini-20-swimsuits-designed-women-who-have-undergone-mastectomy

A terrible case of Munchhausen’s

blue gloves

At work, I spend the day with a class of seven-year olds. They’re fun, bright and still working on the difference between reality and fantasy. This fact is how I came to waste the NHS a chunk of money in 1969.

I have a slightly grumbling appendix. Nowadays it only seems to ‘grumble’ every two years, but on grumbling day I do feel bad enough for some kind of medical consultation but then think:

‘it’s not life threatening, and it’s Sunday, and the walk-in centre’s probably rammed with gastric flu-spreaders and I’ll just wait another couple of hours and see if it goes off’

And it does go off.

Also I remember that I have already been in hospital to have my appendix out 45 years ago. And I wasted all the doctors’ time.

Back then, I was a biddable child, happy to please adults and always give them the answer I thought they wanted – even when I didn’t understand the question. The original pain could have been wind, or a genuine grumble but it resulted in a speedy drive from doctor’s surgery to hospital.

Hospital was fascinating; I was put straight on a ward where there was so much to look at and so many people focussing on me. It still hurt terribly, and pain was not something I was used to. The doctors talked quietly with my parents about a probable operation; it was all very dramatic and I loved it!

But then the pain stopped.

I can remember trying to think what to do or say about it, and being unsure, so I just lay there acting out what I thought my parents and the doctors would want to see;  me looking ill and pathetic. Over time, several different doctors and nurses came to ask me how I was feeling. My understanding at the time was that by lying in the hospital bed patients would slowly get better, so to each successive enquiry, I would say:

“I think It’s getting a little bit better” – obviously in a subdued, well-acted voice.

This wouldn’t happen today because of technology; there would be scans and monitors and a 7-year old malingerer would be thrown out after waiting in the corridor for a few hours.

But in 1969, there were different ways to check an appendix.

After about five “a little bit betters” the last doctor pulled the curtains round the cubicle to enclose me and my parents.

“We think there may be no need to operate, but I just need to check. I’m going to put my finger up your bottom so that I can feel what’s going on inside you. OK?”

And that was how they checked.

I’m sorry NHS that I didn’t pipe up when the pain disappeared. I’m glad you’ve got the equipment now that avoids wasting time and the need for blue-glove treatment. I blame the 7-year old grip on reality, rather than anything like Munchausen’s.  Most of all, I hope I’ve paid my debt back now, mainly by not pestering my Gee Pee for antibiotics every time I get a sore throat and not going to Ay & Ee with my grumbling appendix every other year.