Why Write This Site?
As a patient I wanted Information – not pity
During cancer treatment, I wanted to get on with ‘it’ – whatever ‘it’ was.
I didn’t need “poor you” comments, nor advice on eating miracle foods or alternative treatments.
I needed medically-approved advice, based on clinical trials and scientific evidence, to deal with side effects of the drugs I was on.
These drugs save our lives, but it took a kindly Consultant to tell me they can contain poisons designed to kill what’s attacking our bodies. Put like that, it wasn’t hard to understand why I had gone temporarily blind, my skin started peeling off, etc. What I needed was savvy nurses and doctors, who could tell me what I could do to counter these side effects, whilst the drugs I was on got on with doing their job.
As a patient I found I was often just a unit on the treatment conveyor-belt, identified by my date of birth, without any say in what was being done. As one NHS guru described it ; the hospital-slave syndrome.
Today, I watch patients post-Covid-19 treatment, having similar problems, and realise that the multi-disciplinary health care teams are excellent at dealing with the onset, when patients are probably oblivious to what’s happening. It’s when recovery starts, that helping us counter drug side effects, when healthcare is under-funded, is a struggle. Doctors and Nurses don’t have time to give us the attention they would like, so often ‘little’ things, that might make our lives easier, aren’t available.
Charities say “we are there for you”, but in Britain they follow the NHS line, even though surveys of European post-cancer survival rates place the UK at bottom of the table,. Try to find out what is happening in America or Europe, and you come up against a brick wall.
When I had polio I discussed my treatment with my Consultant and nurses, asked questions and evaluated possible action. But that was the 50s, when the NHS was under Matron’s wise guidance. Before ‘outcomes’, MDTs, tick boxes and computers came between us.
I didn’t find stories of “my journey” much use. We need practical, solid facts when dealing with side-effects from today’s drugs, to help deal with the aftermath. Doctors often don’t have time to answer questions or discuss options, and as side effects from drugs kick in, we can find an impenetrable barrier, with medics unable to allocate enough time to discuss problems. e.g. after starting on Tamoxifen my body burst out all over with bloody skin blisters (skin lesions); these were dismissed as “it’s your age”.
Needing a sane, sensible mentor to help me work this out, I was lucky enough to know the Senior Chaplain of the hospital where I was treated, Revd. David Brown. Hospital Chaplains have seen it all, and David was there to tell me what had worked for others, and gently suggest what I could ask for.
Whatever your religion, or if you are a complete Atheist, Hospital Chaplains can be helpful and non-judgemental. David gave me sensible advice, but I can’t remember once having a ‘religious’ discussion – he was there to be helpful. It was thanks to him, and his marvellous contacts across the world, that I came in contact with medical staff and cancer clinics worldwide, and discovered ways of dealing with many of the drug side effects that made life a misery.
So hopefully, whatever side effects you might have, there is something on this website showing what others have done. I am not medically-qualified, but have been lucky enough to come across some experts who are super-qualified, and share their knowledge.
Once hospital treatment is over, it’s not unusual to feel ‘abandoned’. It’s difficult getting information about medically-approved help for long-term drug side effects, and almost impossible to find products developed to help with these conditions. So I decided to write about what help we could get, and that is what this website is all about. These side effects can last many years, according to research at major institutions.
N.B.. I am NOT medically qualified – so ask your GP, Oncologist or CNS if I mention something and you need to check.
Incidentall my name, Verite: is of Huguenot origin. and means TRUTH. I try to live up to this and ensure that I search out the truth behind claims for treatments.
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