Last time I posted on this subject, back in November 2007, it was to mourn the loss of the local beauty salon, after a takeover by a cosmetic surgery firm. Where, I asked, was I going to have my legs waxed now?
The problem is solved, for the time being. I am being treated for breast cancer, so I have no hair to remove – on my legs, or anywhere else.
Everyone knows that you lose your hair from chemotherapy – it features in a thousand television dramas. What they don’t tell you is that it hurts. Losing it, that is. First the scalp itches, dementedly. Then, when you put your hand up to push a lock of hair, each strand rocks back and forth in its follicle, like a tree trunk being levered out of the ground. Finally, after a couple of weeks, someone shouts “Timber!†and the hair falls out in clumps. Even with the warning, the final falling away is swift and shocking.
The other surprise is that head hair is not the only kind that counts. The absence of eyelashes has been a much bigger shock. Who knew? I now feel very exposed to the world, and the world is very exposed to me. When I cry, my tears splatter and leak in all directions, without hindrance.
I am not one of those people who lap up illness stories. Unless you are going through it yourself, it is not all that useful, and you don’t want to know. The narrative clichés – courage, black humour or gritty realism – are hard to fight. And my own reality, which includes personal problems beyond the illness, has been a bit too gritty. So I hesitated.
But in the end, I am interested to hear what ‘Prospect’ readers think. Is there a place for the personal in this blog, or should it remain “issues†orientated? Or a mix of the two? What makes writing about illness interesting to others?
If you want issues, I can come up with a few. My cancer was missed by the local hospital (Whittington) and was only caught later on a national screening programme. As ‘The Observer’ reported recently, missed diagnoses still result in unnecessarily harsh treatments and extra deaths.
One reason it was missed first time was because the ultrasound view was blocked by a cyst. I had asked radiology to drain the cyst but they refused – too much time and bother. I have since learned that in the US, they routinely draw the fluid from cysts of any size and redo the scan, because they know the risk of having an impeded view.
A gap in UK attitudes worth exploring? Do let me know if you have any interesting stories or information on this point.
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First, your post is worthwhile if only for the description of your experience. Far too many of our friends are undergoing various therapies, so your insight should improve our conversations with them.
Second, there are so many differences between treatment in the US and UK, to the advantage and disadvantage for both, as to make a reasoned broad discussion virtually impossible. For example, it has recently been reported that success in treating prostate cancer in America has advanced beyond that in the UK. But at what physical cost? And is the study good enough? I can certainly recommend the lady physician who writes each Saturday in the FT. She presents very clearly the challenges confronting practitioners in providing reliable advice.
Anyhow, I look forward to reading more should you wish.
I believe the dichotomy between “personal problems” and “issues” to be false. The real issues have to be about real people’s experiences, otherwise their “reality” is questionable.
A matter-of-fact description of problems associated with chemotherapy, especially if it comes from a person you know, makes it easier to relate to it. It also makes you think about your own health and mortality
As JR points out, some of one’s friends are in the hands of the mad scientists ( aka docs ) and it is sad but helpful to read your incitefulful post by way of further empathising with the unlucky few
Last winter, 3 male friends were diagnosed with advanced cancer ; none with good prognosis : 1st (aged 45) struggles on ( with private care – with drugs unavailable to NHS patients ); 2nd (aged 50) died six weeks ago ; 3rd (late 70s) after a year of gruelling treatment has just had the All Clear
Patient 2 ( deceased ) also was misdiagnosed ( Stroud ) The NHS radiologist found nothing, and his consultant suggested he take up yoga. ( Despite complaining to his GP about a stiff neck for the previous six months ) 4 weeks later, a private scan revealed tumours to neck & spine, and thus his understandable anger could just possibly have affected his energy level for fighting the disease
( this usually happy man had much – more than most – to ‘live’ for )
Patient 3 ( septuagenarian ) a natural toughie of the Obama school (” If you are tough you don’t need to talk about it “), decided he had two choices 1. To accept death – having already enjoyed four score years and ten or, 2. To fight it by firmly focusing all his positive mental energy – as he put it – on : ” helping the chemicals to do their work ” despite the obvious challenge to his dignity and pain threshold throughout ( abdomen / intestine / bowel & prostrate )
Prob-ab-ly misguided to suggest patients can think themselves well – but this chap has Macedonian will-power and was not thinking himself well, as such, but concentrating on ” helping the chemicals work ”
This he did religiously several times a day ( unusual – far from a natural hippy, albeit this could have been a bonus – not worrying about non-organic status of chemicals etc ) and he got twitchy with sympathisers : ” I don’t need bloody get well soon cards ” .
Sensitive to this, we none of us mentioned his deep voice turning near soprano – nor his 6′4″ frame shrinking into a corpse-like shadow of its former self ( happily, man and voice well on the way to normal again now )
Whilst treatment was via NHS ( inc several confusing booklets of illegibly hand-scribbled med lists that would have killed a saint ), for each operation & post-op recovery , he paid – not rich but needs must – for a private room ( in an otherwise regulation filthy NHS hospital – Paddington ) for which , despite noisy building works on the floor above, he was fleeced a cool £500 per night
( BTW, I’ve just returned from meeting six senior Swiss doctors – inc. an ocular oncologist – who seemed to view the NHS as a Darwinian survival course, where patients are treated like dirt; and concluded NHS employees would not survive a week in the real world )
With regard to early detection ; a cousin and a sister both have recently survived breast cancer scares ( including one mastectomy ) possibly in part coming from a remarkably strong gene pool but also, in the sister’s case, due to pre-cancerous cell detection via tests which I understand are not yet available on the NHS, if in the UK ?
Both live and were treated under private health insurance abroad
(USA & Switzerland) and thus , when debating the difference between USA and UK we need to include the “hidden ingredient” that is NHS ?
A final thought : Mr All Clear said the most debilitating part for him was the extreme fatigue after each session of chemo. Obviously depends on the individual, but another unlikely cancer survivor has since said he fought this fatigue by taking a strong sleeping pill immediately after each session so that he slept off the side-effects
Anyway, good luck , and yes please do keep us posted
In response to your question about US routine scans , I forgot to mention the sister also had the fluid drained from a cyst before pre-cancerous cells were detected. However, this was some time beforehand. Could the process of drainage while allowing a clearer view also contribute to cell growth perhaps? Active surveillance
of cysts might be one way forward ? Prof. Coombes would know ?
A radiologist ( recently emigrated to Canada with nuerologist wife in utter disgust at the NHS )has advised that a radiologists direct experience of scan protols needs thorough research before taking anything they say seriously, and even then to ‘get a second opinion’
i.e. MRI / MRV conducted at one hospital shows nothing – the same scan done at Queens Sq finds different results inc cavernoma etc.,.
Thanks to everyone for the encouragement about future blogs on this theme, and the medical information from “The Bolter” looks like it could be very useful for my research.
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