Cancer care: underplayed or overlooked?

17 Jun 2009

As a breast cancer patient I wanted to write a book that was relevant for both cancer professionals and patients. As Prof McVie commented when he reviewed the book, 'I recommend newly diagnosed patients read 'even the eyebrows?' and newly qualified doctors, too!"

As a single parent, running a busy household (Richard 8, Jenny 10, Merlyn 14) as well as a PR consultancy, I really didn’t have time for illness. So, in 2004, when I was diagnosed with breast cancer, my first thought was the terrifying-but-normal ‘I’m going to die’. My second was, incomprehensibly: ‘how long will I have to take off work?’ Once I got my head round the fact that I was now a cancer statistic, I hit the bookshelves and did some research, so I’d know exactly what to expect - and, as Professor Gordon McVie tells me, cancer is the second most searched topic after pornography, so there was plenty to read online too. I should have been pretty well informed before I embarked on this journey, but I wasn’t. What’s missing is frightening - and you don’t even know you need the information until it’s too late - by which time you could have died of embarrassment, not cancer…

Let’s face it, when you hear those dreaded words, ‘It’s cancer’ your brain does freeze and you don’t necessarily think in a joined up way. Therefore it’s only fair that the information a cancer patients needs, from the very beginning, is presented in an easy to grasp, non-threatening way - and not just in writing. The only problem here is that many oncology professionals appear to believe they’re doing that already, but from my own recent experience, that’s far from the case. The sheer magnitude of available information was, still is, overwhelming, but where’s the really helpful, relevant, practical stuff? I don’t need to know that I might get diarrhoea, I want to be prepared for the time I’m in a meeting and my bowels decide on a surprise eviction. I don’t need to know that I might lose my hair and be given a list of wig shops, I want to know exactly how it falls out, how long the process takes and how I might feel wearing a wig in a Force 10. I don’t need to know that I might get cording; I want to be shown how to deal with it effectively. I would have given anything to have some down-to-earth discussions handling specific physical situations in advance of my treatment. Here’s a small sample of what I learned ‘on the job’.

Shit happens
It’s a well-known fact that diarrhoea can be a side effect of chemotherapy. The trouble is, no one tells you how to prepare for the moment your bowels let you down.

Mine did exactly that when I was in London for a meeting. Luckily, I was on my own and able to waddle off to a loo to sort myself out. I still didn’t feel ‘safe’ and had a 60-minute train journey ahead of me. It was upsetting, degrading and unnecessary. After that I never left home without my bespoke shit kit: Imodium Instants, spare knickers, night-time sanitary towels, tissues, wet wipes, body spray and scented nappy sacks. This wasn’t just a physical help - it had a very positive psychological effect too; I felt more confident so I knew I could carry on, almost as normal, when I was at work or just out and about.

Pregnant women are always told to have their overnight bag ready, just in case, and they’re given a Bounty Baby bag. At the very least we should be told to prepare a kit, but why stop there, why not give us a starter pack too?

What really happens when you lose your hair
Like most women, the thought of losing my hair came a close second to learning I’d got cancer, yet no one ever describes how it actually happens. I was told, ‘you’ll see some hair on your pillow in the mornings.’ I thought back to those very fine, wispy little hairs on the cot blanket… but there’s no comparison. This was full-scale defoliation, exactly 19 days after my first chemotherapy session. So I got the clippers out and persuaded my children to give me a Bruce Willis. This all sounds very matter of fact, but it was a heartbreaking, traumatic event. Weeks before reaching this stage I’d already discussed the options with my family: should I wear a wig, a scarf or go commando? I chose wig.

Wearing a wig the first few times was petrifying. I felt very insecure, and was convinced someone would pull it off as a joke. Well it nearly did come off as the Norwich-London express train sped through Colchester Station. It was only by using my mobile phone on one side and my fingers on the other, that I could clamp my wig to my head and avoid complete humiliation.

After my fourth chemotherapy session, my hair started to grow again, and that’s when my eyebrows and eyelashes decided to do a disappearing act. Luckily with the clever use of make up, this wasn’t too noticeable. But after my fifth session my fingernails and toenails flaked off. Not only was it unsightly and painful, it was an enormous surprise to both my nurse and me. I had to suffer in silence in the office but, at home, I found fresh air helpful and flip-flops bliss.

Perhaps I should have known about cording, but I didn’t, certainly no one ever spoke to me about it. So, a couple of weeks after the operation to remove the tumour, when I experienced acute pain every time I attempted to stretch for something, I assumed I’d overdone the post-operative exercises. The odd thing was that I could see this thin bony line under my skin, and couldn’t work out what it was. The physiotherapist at the hospital did; it was, hardened lymphatic vessel, and got rid of it straight away by ‘pinging it off’ (sorry, no scientific terminology available). I could actually hear a tiny pop sound as the vessel snapped and this delivered instant relief She taught both my sister and my daughter how to ‘ping off’ the vessel, to save me trips to the hospital. As I had so much cording, I learned to do it myself and became quite expert. I discussed this with my surgeon who told me an excess of serous fluid (which apparently I had) could often lead to cording. Yet, talking to other cancer patients, I found that they (a) like me, knew nothing about cording, or (b) were told it ‘will eventually disappear’, or (c) advised to gently massage it away. Personally, I’m glad I could get rid of the discomfort; why should you have to put up with this on top of everything else? But what’s the party line here? I don’t have a clue.

Chemotherapy at home
When I was asked if I’d like to have chemotherapy at home or in a private room in the hospital, I assumed this choice was due to my company’s private medical insurance scheme. I chose home. For me, having chemo at home meant I was there when my children returned from school, we could have tea together while I was still ‘plumbed in’ and they could see for themselves that it wasn’t remotely scary. As important was the fact that I was more relaxed in my own surroundings and felt more in control. This control was good for my soul, because it’s so easy to feel that you’re secondary to your treatment.

When I mentioned that I was having chemo in my living room, everyone was universally surprised and delighted and, like me, put it down to the medical cover. When I asked Healthcare at Home, the company who treated me at home, why this service wasn’t offered to everyone, private and NHS, they said that in some cases it was. Of course there are times when chemotherapy has to be administered in hospital, but where that doesn’t apply why don’t NHS Trusts offer a home chemotherapy service as a free option? It may even help save money and improve service by reducing waiting times in outpatients and the pharmacy; freeing up valuable nursing staff and avoiding the need for a hospital to lay on transport. Also, when drugs are administered in the community, they’re exempt from VAT. Shouldn’t everyone about to have chemotherapy, providing it’s feasible, have a right to home treatment? If their NHS Trust says ‘no’, they should then be given some help to shop around.

Going hippy
Through chatting with past cancer patients, I found that a couple of them had had reflexology throughout their treatment, and said it had boosted their feeling of well-being. I’d heard of reflexology, but never had it. I knew it was a massage-based therapy, which is supposed to be excellent at restoring and maintaining the body’s natural equilibrium when it’s getting a pounding from the drugs. I don’t really understand how all that works, but anything involving having your toes fiddled with for an hour has got to be good! Yet, when I wanted to book sessions, I met with opposition from reflexologists who said it would counteract the effects of the drugs. This is complete rubbish of course, but some women would have been discouraged from getting this totally relevant complementary therapy, which is a shame. I believe reflexology was instrumental in helping me cope as well as I did - I was able to work throughout the eight months of treatment, only taking two days off during the week I was having chemotherapy, and walk two miles, three mornings a week before work (and I HATE exercise). I’m still not sure whether it was the one hour of pampering a month, having my Chakras rebalanced or breathing in more fresh air than I’ve ever had in my life that made the difference, but it worked for me.

It’s such an anomaly that while significant progress in treating cancer continues to be made, something as basic as providing practical guidance on well-known side effects is either underplayed or overlooked. It doesn’t have to be that way; it’s a problem that’s so easy to solve.'

Even the eyebrows?' by Sharon Morrison