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Recovering from cancer treatment – two years on

article-0-1a9a672b000005dc-23_964x576A year ago I wrote a post about how great it was to have survived cancer and to go back to the normal everyday things. When I now read my last post I struggle to remember how that felt because now it’s two years on and everything seems so different.

I guess I thought that everything would be changed; that I would see the true purpose of life, I would make the effort to do wonderful things, not waste time, and have amazing adventures. How I wish…

But it hasn’t. I’ve slipped back into old habits, worries and that dull comfort zone which probably contributed to the disease in the first place. I think it’s a common problem; your friends, family and work colleagues give you lovely treatment in the aftermath of bereavement, divorce or serious illness. This helps you on the road to recovery, and soon everything seems fine, but these are all long processes.

Two years on and I’m still thinking about cancer every day; every glass of wine, every chocolate bar, every hour spent on the sofa, every stressy work day, every funeral, every glimpse of the scar. I’m not feeling sorry for myself; I am cross with myself that the post cancer wonder-world I experienced hasn’t lasted, and that I still have exactly the same faults that I had before this whole shebang started.

Not to mention the poor old NHS.

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Recovering from cancer treatment – one year on

tunnel

It’s about a year ago when I was diagnosed with lobular breast cancer. Since then I’ve had two operations, six rounds of chemotherapy, and 15 sessions of radiotherapy. I’ll be on luxury tablets for five years but have been given the all-clear in the meantime. How strange it was; like a Narnia experience where time has a different value and yet I’m now thrown back into normal life.

I am now so enthusiastic about my everyday experiences – I have to hold back when people moan about Monday mornings or difficult situations that annoy them. It’s just great to have got through treatment and be allowed to have ordinariness back again.

What is hard is to cope with is when people have a worse cancer prognosis than me and know they have a much more limited time; I feel that it’s not fair. Or the women who tell you that breast cancer always comes back eventually; that’s understandable anger but please don’t.

In conclusion, my time in treatment has resulted in me enjoying the ordinary things in life, not getting stressed about stuff and wanting to help other people who are suffering.

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Side effects of cancer treatment: financial problems

One Million Pounds Sterling

You know how you can never leave a lottery syndicate, because the week after you stop paying up, the syndicate will win a multi-million pound jackpot? Well, for the same reason I made two huge financial mistakes before cancer.

This will have to be be my last post on this paid-for blog site. I’ve simply got to save money and pay off my debts.

Back in the early ’90s, there was a trend for ‘critical illness’ insurance policies. My husband at the time and I were quite enjoying playing at being grown-ups and had excess money to spend on men with laptops who came round your house for various reasons. In our 30s, we both took out critical illness policies just in case we developed diseases, disabilities or had freak accidents at the seaside. I think we paid over £6,000 into these policies and didn’t manage to break even a leg.

A few years later, there was bad press for some of these policies as the later ones had too many exclusions and were refusing to pay out, so, in order to cope with the costs of divorce, I cancelled the policies and decided I would just have to look after my own health, take exercise and not do anything too risky at the seaside.

When I had to extend the mortgage on the house, I also decided to do away with the payment protection insurance. PPI had also had bad press; I could see why a self-employed person might need it, but I worked for a County Council and had superb employee protection – they even offered me a subsidised bicycle so I had no fear of losing my job or needed help with the mortgage.

My two financial decisions saved me about £80 per month, which was fine until I was diagnosed with breast cancer. I should have continued to pay out or at least put money aside, because worrying about money when you are having cancer treatment adds to the difficulties.

My employers paid me for 100 days and then sent me standard letters that go to malingerers with sore knees rather than someone having chemotherapy. My pay would be halved and then zeroed. Friends in the private sector were mostly unsympathetic; I’d been lucky to get anything. The cancer charities do a great job to help people who end up on sickness benefits, but I still earned enough to feed my children, just not enough to pay for the expensive hobbies that they take for granted.

So I rushed back to work full-time as soon as the treatment finished; I enjoy it, but I particularly enjoy the thought of eventually paying off my overdraft and having normal health and normal finances. And that will include a ‘rainy day’ fund.

Rainy-Day-Fund

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Side Effects of Chemotherapy – Nail Trouble

tree

One of the most irritating long-term effects of cancer treatment is revolting finger and toe nails. The gnarly look of them is bad enough, but it’s so frustrating not to be able to peel a sticker off or lift the ring on a drinks can. The chemotherapy drug Taxotere (also called Docetaxel) is the second part of the FEC-T chemotherapy for breast cancer and it sees off your extremities with no mercy. Just like the bark rings on a tree show droughts and polluted air, so your nails start to have ridges that show you’ve been poisoned. And it takes months for this to grow out.

My fingernails also fractured into thin layers and split apart every time I touched something. It didn’t hurt; they were just a bit numb. This numbness is called ‘peripheral neuropathy’ and I seem to have been left with it particularly in my toes.

Some people are rightfully squeamish about other people’s feet so I won’t go into detail. But three months after my last chemo session, I can still find toenails that have completely fallen off in my bed. They seem to grow back and fall off like snakeskin, but I can’t feel a thing – especially in my big toes. I have got used to a very weird feeling in my feet. I can’t feel my socks or shoes when I wiggle my toes and it feels like my feet are infinitely big with no end to them.

BrassFingerpick-11

I was never great at finger-picking on the guitar, but now I do have a good excuse for my fumbling and mis-twanging.

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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.

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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.