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Side Effects of Chemotherapy – Hair Loss

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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

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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

British Election Result – Bad Behaviour on my Birthday

poor-beggar

I am sorry that I behaved badly yesterday. I was angry. The 8th of May is my birthday and I woke to hear that the Conservatives were going to gain a majority in the UK parliament.

Over the day, I became angry with myself for not having a proper understanding of this country and its people and now I do, I don’t think that we can save the NHS. Most people are too selfish.

In my head, I had a picture of the ‘hard-working family’. You know, the one that involves taking toddlers to nurseries and rushing to work and just about getting by at the end of the month based on a couple of low to middle income jobs. As a single parent who worked full time, I had felt particularly ‘hard-working’ and also ‘squeezed’.

Both Labour and Conservatives tossed around this idea for many many months prior to the election; they conjured unspecified millions for the NHS because that is the apple pie and motherhood mantra for modern Britain which was needed to win the election. Hooray! Hard-working people will be able to see their doctor at 9pm so they can get back to work.

But maybe the voters aren’t so hard-working after all.

As I’m recovering from chemotherapy, a good friend took me out for a birthday lunch. We went to a posh tea shop in a niche retail outlet where people spend money on lovely and expensive bits and pieces for their homes. On a Friday you get hundreds of affluent pensioners here; the yummy mummies and the women who work part-time so they can manage everything.

In a flash I saw it. The Conservatives won because there are so many more of these people now. If you can sit and have coffee and cake on a Friday afternoon then life is good and why change anything? Talk of food banks and benefit payments is as meaningless to these people as the swollen bellies of starving children in Ethiopia.

“I think it’s good the Conservatives got in; they’re doing all right for me,”

said a youngish lady next to me, pleasantly.

I scowled and took off the woolly hat to reveal the bald chemo head.

“Yeah, I used to think that before I had breast cancer, but suddenly I need the NHS and it’s being sold off for profit…….and I had a secure well-paid job, but now I’m having to find out about benefits and charity payments.”

I poked my crude baldness at her in what I thought was reminiscent of a Charles Dickens novel. I hope I didn’t jab a bony finger at her.

“You might think you’re all right now – but you don’t know what’s around the corner.”

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First FEC-T chemotherapy for breast cancer

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A lot of people have family members to take them for chemotherapy. You see the relatives fuss and get stuff out of efficiency bags packed with magazines, foil-wrapped nibbles and i-pods. They look anxious and they obviously feel terribly powerless to help the person going through it, because that person is locked in. It’s like getting onto a new roller coaster-type ride at a theme park and there’s no escape once the safety bar is in place; you just have to sit it out however scary or sick-wrenching it is. The people on the ground can’t do a thing to help you with your fears; their thumbs up and jolly waving gets ignored as you have to set your brain to survival mode.

With no family to drive me; a friend dropped me off. I had wondered what to wear. Should I dress up posh and hope for superior treatment (like an NHS free upgrade?), or go for comfortable, with layers to take off or put on if the temperature went crazy. In the end I went for comfortable-posh but with easy shoes.

My appointment was early in the day. The room with about 12 treatment chairs was empty as I was directed to sit down by an extremely jolly nurse. She sorted out the blue tray with the drugs, hand-maggot and needle-stuff whilst listening to my worries and assured me I would be fine.  My big worry was an allergic reaction in the first 10 minutes. If that happens, a crash team fly in and sort you out, but apparently it was not going to happen to me…

After taking steroid tablets and a ‘sharp scratch’ on the back of my hand for the cannula maggot, it all started. The FEC part of the treatment is 3 separate drugs given one after the other, and there are lots of medical websites that explain this if you want to know. Instead of having a drip to pump and gravity- feed these drugs into me, I had a method I labelled nursie-squeezie. She sat there for an hour or so, slowly pushing the syringe-plunger and chatting all the while. It was a really good way to get to know someone. I heard her life story and she mine; we founds points of connection and had a pretty good laugh. There was no allergic reaction, and I was not sure whether the slight weirdness I felt was due to the chemo, or my overactive imagination.

When I asked the nurse about side effects later, she just said, “You’ll be fine,” and that gave me confidence. I rang my friend to arrange to be picked up, and carried my packets of pills, syringes for tummy injections and the yellow sharps bin out to a sports ground car park nearby. When my friend went to pay the man in the hut for her parking time, he looked at my pathetic expression, packets of drugs and bucket and said,

“Oh no, love… that’s all right…. you don’t have to pay.”

Gosh. The cancer perks have started.

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Chemotherapy – finding out about FEC-T treatment with positivity and Google

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The first thing I did after finding out I needed chemotherapy for breast cancer was to go home and Google the effects of the FEC-T treatment I was due to have. There were several YouTube videos of women, mainly in the USA, documenting their journey through the treatment. It was horrible but motivating at the same time. There was no way I could imagine myself being bald with dark-eye-circles and that mood-branding that people interpret as ‘brave’. The videos went through different rounds and days of the treatments, but often had gaps of many days followed by admissions that the women had been too ill to film. That scared me, but then I started the positivity trail. It goes like this:

“Many thousands of women are having this treatment. It affects everybody differently. If you found that you could get on with your life and it wasn’t too bad, then you would do that and just be thankful; you wouldn’t make videos about it. So maybe the women in the videos are unrepresentative and I will be okay.”

The worst thing before it starts is the uncertainty about how having chemo would feel. Was it just going to be like ‘the worst hangover you’ve ever had?’ Would it put you at death’s door for days? Was it going to change your personality and make you bitter or bolshie? Google was not helping, but there was real life advice for me too. Suddenly lots of lovely friends turned up who had a grandma or auntie or sister who’d been through it and they were able to recommend me pineapple and ginger and toffees and special tea and chewing gum and all kinds of stuff that might make it better.

The NHS gave me more leaflets for my collection and invited me to a group powerpoint presentation on chemotherapy given by a nurse. I don’t remember much about it apart from thinking how much I hate powerpoint presentations. There were also a couple of bitter and bolshie men who had already had chemo before who were obviously planted in the audience to scare everyone with their juicy extreme anecdotes with X-rated medical detail about how they nearly died.

In the days before the chemo started I spent a fortune having my hair cut in a punky crop and dyed carroty red. Then I went out and enjoyed myself as if it was the end of the world; I talked to strangers, I went to bars on my own and I really tried to swamp the fear with fun and positivity. I really did try.

NHS chit chat

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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.

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