My Treatment pathway
I developed a lot of nasty side effects such as temporary blindness, peeling skin, etc. Oncologists told me "it's your age", or tried to deny symptoms existed, saying they had "never seen this before". I was lucky enough to be a friend of Rev. David Brown, The Royal Marsden’s Senior Chaplain at the time, who had been on the Ethical Committee that approved Tamoxifen. He was honest and admitted that treatment in Europe was better for the patient, so I took his advice and was treated in France, Germany, Austria, Italy and Switzerland. There, they didn't brush me aside, but would freely admit that symptoms I was suffering came from the drugs I was on, and "this is how we treat it".
So I set up a website to tell other patients what I was told, and what help we could get. Then, Macmillan published "Cured - but at what cost?" which admitted 1 in 4 of us will suffer side effects from cancer drugs - and I knew I was on the right track. Medics acknowledge cancer drugs are very powerful, often full of toxins, and are beginning to realise they must help us with side effects; not brush them under the carpet. Now, new drugs are being developed which are much kinder to us, so hopefully, side effects will eventually disappear.
Hit by a ‘Double Whammy’
You are NOT the 'only one' when you experience worrying side effects.
Why do doctors in the UK deny side effects? We don’t lose our brain as a result of cancer – so I objected to my symptoms being brushed aside. Perhaps arrogance masks despair, as the NHS often seems ill- equipped to help. One doctor, more honest than the rest, said: “you must realise these hormone therapy pills are like having mini-chemo for five years“. Others told me contents were poisonous - to kill off cancer cells. Hence the reason why the rest of our body can react violently. Why aren't we told of products that help? Especially with skin problems that occur as a result of today's drugs. Other countries work with their cancer societies and hospitals to develop tailored skin care, so why not us? I have listed some products developed abroad, in conjunction with their cancer associations, and hopefully, my website will make it easy to order these online.
What’s wrong with listening to patients?
Andrew Lansley (ex-Minister of Health now working for Pharma company Roche) said that patients had to be at the centre of treatment, and listened to. But no-one has time, so we have to find our own solutions. I met some lovely doctors like Dr Paul Clayton who told a conference "some doctors in Britain are ‘barbarians’. I tried the Internet and found America seemed to have the most helpful and accurate website information. But make sure you look at official sites from approved charities or their excellent cancer hospitals. Cancer helplines in the UK are getting better and can offer good advice.