About me

by Verite Reily Collins

The word ‘cancer’ can strike fear in to anyone’s mind, but I found Cancer treatment was a doddle. I had confidence in my surgeon, Mr. Gui, so I didn’t see why I should worry.

Until ………. I was put on Tamoxifen.

The British health service, both private and NHS, gives almost no help in handling drug side effects, and I began to realise why there is a fear of cancer lurking in the back of everyone’s mind. In Britain medics are far too busy dealing with the basic disease, and have no time to help once you are off the treatment conveyor belt. It seems incredible in this day and age, but however intelligent and feisty you try to be, when faced with a doctor who – genuinely – tries to deny that horrendous side effects you are experiencing are due to the drugs, you feel like giving up. Are you going mad?

Instead, in a nasty about-face, the NHS tries to blame poor cancer survival rates on us – saying it is OUR fault that survival rates are worse than Europe, because we don’t take up screening and tests when we should.

But this week (Dec. 2009) comes word that we are doing what we should. We are taking up screening and having tests done – in fact we are one of most responsible nations in Europe. BUT … we still have one of worst post-cancer survival rates in Europe, only ahead of the Czech Republic for some cancers.

What is even more worrying is that so many powerful drugs, not only for cancer, but for other diseases, pain relief, etc. are being prescribed – yet doctors have little or no training in dealing with the side effects. And knowledge of possible reactions that might occur, are brushed aside.

Hence many patients decide to come off the drugs given to us, either because they can’t handle side effects, or the lack of knowledge of how to deal with them from our medical advisors is worrying.

The good news is this problem is at last being addressed. The Dept. Health has realised they must do something about helping with after-effects. So there is a Cancer Survival Strategy plan – due to report in 2012!!!!

Don’t weep! Just decide that you ARE going to beat this, and become your own medical sleuth. It’s not difficult, with so many excellent internet sites (don’t believe doctors who try and pooh pooh them – these sites are set up by the world’s top cancer hospitals in US).

Being an inquisitive person, I went off looking for my own solutions. Breast Cancer Care say 74% of us look for information on the web, and I used this to my advantage. I found lots of products and treatments that CAN help, so decided to let others know – and set up this website.

Necessities rather than luxuries As I looked for help, I found out that old therapies such as massage were incredibly helpful. At the Paul D’Auria Cancer Support Centre they told me, “it is important to emphasise that, while services like massage and reflexology may seem like luxuries for people who are well, they are actually critical in reducing distress and increasing wellbeing for people with cancer”.

In Britain we don’t pay enough attention to Complementary Therapies (NOT Alternative – there is a difference), yet in Europe they are used as part of regular cancer treatment. In Europe their post-cancer survival rates are better than ours – this must say something.

So – I was able to take advantage of some treatment in Europe, and this website gives – hopefully positive – information about what I found, what I was given, and how we can access this in Britain. Good luck – follow me – HAVE FUN!

Background – or why this website happened

It’s all been very satisfactory, hasn’t it?” beamed Dr. 30 Second, when I went for my check-up at the end of radiotherapy treatment. He nearly fell off his chair when I spat back “NO!” He had given me no help with dealing with Tamoxifen side effects – so I told him that I had been very disappointed in the standard of care, and we parted.

Having Fun After Cancer is about what happened next, and overcoming side effects caused by these hopefully effective but very strong drugs. I hate those “how I suffered” books – but if you are told “I’ve never seen this before”, by medics, print out this page with my good wishes and shove it under their noses.

Currently, the NHS’s own research says more than 60% of us are non-compliant. This means that we decide to come off the drugs, either telling our medical team, or sometimes just quietly throwing away the pills. This is wasteful – both for ourselves, and also of NHS resources.

The start

At first I meekly accepted that my symptoms might not even be caused by the drug; perhaps they were caused by an allergy to something completely different? Until I asked Revd. David Brown, the Marsden’s Senior Chaplain, who kept all the notes from the Ethical Committee meetings that approved Tamoxifen. Each time I phoned about a symptom, he would look it up, say that yes, it was documented as a side effect, and even give me the percentage who had suffered this effect during trials.

So much for the doctors saying they had never heard/seen my symptoms before.

Then, when I started to write this website, others contacted me to say they had the same side effects. And yes, the doctors had tried to deny they were caused by cancer drugs. If you don’t believe me, just read the comments on the site.

Cancer treatment doesn’t make us lose brain cells

So why on earth do doctors think we are so stupid we will believe it when they deny side effects that are presented to them? Do they suffer from collective amnesia and forget the papers they read about clinical trials? We don’t lose our brains cells as a result of cancer – so I objected to my concerns being brushed aside.

Helpful doctors admit that colleagues are arrogant; but sometimes I feel it is because they are so over-worked they don’t have time to deal with the paper-work and us. Something has to give!

SIDE EFFECTS

So off I went and found so much that really helps:

treatments and therapies (see under massage)
products that restored my skin – look under:
Body
Face
Hair

etc.

For me (but NOT for everyone) Tamoxifen unleashed a chain of problems. The more eminent specialists I saw in London, the more worried I became. These people were in denial, saying they had never known this drug to cause my symptoms before. Yet talking to other patients, they said they had similar problems, but their doctors couldn’t help either. Couldn’t – or wouldn’t?

One friend had dreadful hot flushes; her doctor didn’t do anything to help until one day during an examination she had one – and sweet poured off her in rivers. That made him sit up and say “I never realised it was so bad”. Why not? Listening to patients, the penny should have dropped.

Eventually I got the message that I had to find my own solutions. Medics in Britain just don’t have time to treat problems – only to deal with the primary cause.

Finding Out The Chaplain admitted “doctors come to me and say they don’t know how to talk to patients”. But there are really, really helpful medics out there – it just takes time to find them!

I met lovely people like Dr. Paul Clayton who agreed some doctors in Britain are ‘barbarians’, and I could quote him!
I tried the Internet, and found America seemed to have the most helpful and accurate website information. But watch out that you look at official sites from approved charities or their excellent cancer hospitals.
There are some weird sites, selling ‘cures’, and other money-making products that do nothing for us, and can even be dangerous if you follow them. NB. If they ask for money avoid the site.
I contacted cancer helplines, but eventually gave up when the nurses would tell me “you seem to know more about this than we do”.
I met one doctor, more honest than the rest, who said “you must realise these pills are like having mini-chemo for five years“.

Thanks a bunch. So why don’t doctors do something about these side effects?

I hope you are one of the lucky ones who DON’T have these side effects – but if you do, you are not alone, however many times medics tell you “I’ve never seen this before”. Maybe they should go to SpecSavers?

EUROPEAN SOLUTIONS

European post cancer survival rates are far, far better than in Britain. So when I had to go to there with my job, I decided; one visits Museums to help improve our minds, so why not visit the local cancer centre to improve our health?

Asking local tourist boards if they had a centre that treated post cancer patients, this produced a stream of information. Most Tourist Boards are delighted to promote anything good in their region. They were proud to book me into the local cancer centre, introduced me to top medics who were incredibly helpful, and I learnt why Europe generally has a far better post cancer survival rate. So don’t do what I say – copy what I did!

WARNING! As I write about skincare I realise that not all chemicals are bad, and not all so-called ‘pure’ products are that. But anything I mention has either

been Clinically trialled,
or can be prescribed on the NHS,
as far as I know is genuine about being pure or even organic, with a minimum of chemicals.
and/or has passed the US Food and Drug Administration tests (or similar ones in places like Australia, where they have excellent post-cancer care).
Or is a treatment approved by a charity such as Macmillan, Cancer Research UK, etc.

I am NOT medically-qualified, and although I have been very careful only to mention products and treatments that have been approved in some fashion, you never know. A product that works extremely well for others, might give contra-indications if you are on a cocktail of drugs.