WHEN MACMILLAN PUBLISHED ‘CURED – BUT AT WHAT COST’, I SHOUTED HURRAH!
Macmillan’s Report highlighted that up to 25% of us might eventually end up with long term side effects from Tamoxifen (one of the cancer drugs I had taken). Since then further reports have highlighted that pretty well ALL cancer drugs, for chemo and hormonal therapies, can produce nasty long term side effects, which might not show themselves until long after we come off the drug.
Today, asking for help dealing with long term consequences such as Lymphoedema, Osteoporosis, Neuropathy, etc. meets with indifference, but here was Macmillan’s official report saying that serious problems often appear after treatment finishes.
When side effects started, I expected to talk over possible actions with doctors, as happened when I spent a year in hospital with polio.
But things had changed – Matron no longer kept a kindly eye on us. Instead of discussing and working out possible things to help with my side effects, I was told “it’s your age”, “I’ve never seen this before” or sent to Macmillan, Breast Cancer Care, etc. for advice.
So I asked advice of David Brown, the Chaplain at my hospital. As a member of the Ethical Committee that approved Tamoxifen, he had been invited all over the world to lecture on this. His contacts were superb, and when I appeared with bloody blisters all over my body, David told me these were NOT due to age, but almost certainly were a side effect of the drug; and arranged for me to see doctors at La Roche Posay, the centre in France where they specilise in this type of problem. A week after he had suggested this, and a couple of phone calls, I was there. There was no fuss about a GP referral; if I didn’t have one, then if I were prepared to pay the reasonable daily fee to be treated at the clinic, I would see a ‘gatekeeper’ doctor who would map out a plan of action for me.
What is it like in a French Hospital?
Arriving, I found Reception full of men putting on make-up. Badly burnt, they were learning how to conceal scars. The Centre itself was efficient; no waiting for appointments. Many staff trained in America, so spoke excellent English, and their skincare company offshoot made lotions and potions that helped my skin.
My first appointment was with a ‘gatekeeper’ doctor, who set up a series of appointments which started immediately I left his consulting room. No sooner had I finished one appointment, stepping out into the corridor there was a smiling face beckoning me into another consultation. In between, there was no waiting in Outpatients, instead I was given a superb massage. By the end of the first day I had had tests to confirm my blisters were a side effect of Tamoxifen, was given results of these, plus a box full of lovely lotions and potions clinically designed to help my skin recover
Sadly David died. So I had to learn to sort out the next problems myself. But it is surprising what one can find on the Internet. First off, I discovered major American cancer hospitals had informative websites (see below).
Then, as my job took me all over Europe, I could decide if I wanted to be treated at home. Or, if treatment in UK wasn’t forthcoming, I looked up the best place in Europe to treat the condition, sold an Editor the idea of doing a travel piece around wherever I wanted to go – and set off.
Eurostar made day trips possible, and when drugs dried out my skin, I ended up in a medical spa surrounded by the French Tour de France cycling team on a training session; another time I was doing a story on dog sledding and bumped off a dog sled (huskies soon realised I hadn’t a clue about mushing) – but the hospital sorted out the bruises – and my painful joints.
Food was good (except in German hospitals – lots of stodge). Italian medics were like extras in a film, and three years ago wired me up to an all-singing computer that is just being trialled in the UK. And European medical care always seems to include at least one massage session. Bliss!
Disadvantages? Having to pay (although I did get some treatment on the EHIC card) – but bills were cheaper than I thought. And I love the European ‘can do’ attitude. Faced with a problem, they weren’t going to shrug it off as ‘due to age’, but worked hard to find a solution.
Neuropathy (one side effect) put a stop to my travels, but long term side effects still pop up, so I started this website to offer short-cuts to others on finding help:
very articulate Forum discussing pros and cons of various cancer drugs
ASCO – American Society of Clinical Oncology
Memorial Sloan Kettering Cancer Hospital]
Dana-Farber/Brigham and Women’s Cancer Center
Johns Hopkins Hospital
University of Washington Medical Center
Contacting American hospitals seems incredibly easy; they are supposed to be money-oriented, but those I came across were very helpful. I frequently emailed over a question and back would come an answer almost immediately, at no charge.
We all know the NHS is in dire trouble, but with the Internet, low-cost airlines and English being the international language, the old barriers to treatment abroad aren’t there any more. And when just about every European country has better cancer survival rates than we do, it makes sense to go aboard.
Tourist Boards are generally VERY helpful. Every country wants to take advantage of Medical Tourism, and as long as you make it obvious that you are paying, their red carpet spills out.