Why Write this Site?

Why this website happened

LIVESTRONG, the American cancer charity, says “We believe in information – not pity”.

Information is exactly what I wanted when receiving Cancer treatment: but in Britain, it seems we are set on a production line, and no time to ask about what concerns us. We are offered pity – asked to tell our story and all that. But practical, solid facts to help make a decision about MY treatment were very difficult, and doctors just didn’t have time to answer all my questions or even discuss options. As treatment came to an end, I felt abandoned as long-term side effects kicked in, I found there was an impenetrable barrier put up, with medics reluctant to give me facts. But  – I am a practical person. Give me the correct tools and advice, I will use and follow them, and find often the medical professionals treating me are surprised at how I get better quicker. But I have only followed their advice and got on with things, not stood around.

Many other cancer patients say once hospital treatment is over, they also feel ‘abandoned’ and have to work things out for themselves.  If this happens to you, this website is here to give you ideas and information about where to find help, and examples of what others have discovered, so you don’t feel so alone.

My name, Verite, comes from French Huguenot immigrants of the 16th century and means TRUTH. I try to copy my name (a bit difficult at times) but am getting fed up with the way Politicians (particularly those with their fingers in the Health pie) are misleading us with ‘porkies’. The Nuffield Trust produced an analysis of the results of the last election, and say that the politicians told us one thing, but voters were mainly interested in the NHS.

Before the Election, I had written to my MP to ask him to intervene and stop the closure of a local NHS service that cancer survivors depend upon. He replied back telling me “the NHS is doing a marvellous job”. I then questioned why Uber was being considered for hospital transport, to receive back what I can only describe as an advertising blurb praising the company – but not answering my points re Criminal Record checks, etc. Strange!

Politicians love to tell us “the NHS is the envy of the world”. Yes, those with poor access to modern healthcare, love the way they can come here and be treated for free. But the rest of the modern world is not interested – even Polish workers fly home for operations; as one told me, “we don’t trust your NHS”. Do you remember BA’s slogan “World’s Favourite Airline”? This was actually dreamt up by their Ad. Agency Saatchi and Saatchi. I suspect the same team invented NHS slogans. Yes, give Granny a cup of tea whilst she waits in A & E, and she calls the Nurse an angel and won’t say anything against the system that has her waiting on her trolley in a corridor for 12 hours. I was treated for cancer in a London hospital that said it was “World famous”. When I went to Europe to get better treatment, I soon found this wasn’t so – most medics there searched their memories, before asking “is the XXXX hospital a British one?”

During treatment here, it became obvious that I was developing a whole lot of nasty side effects; even more obvious that having put me on the tablets that gave me blindness, peeling skin, etc. the Oncologists hadn’t a clue what to do about these, so tried to deny they existed, telling me they had never seen this before. So I set up a website to tell other patients that this wasn’t true, and lots of us were getting nasty side effects. I then learnt how the NHS deals with whistle-blowers – and I was classed amongst them. Not fun. We could ask for better care such as is given to those in European hospitals. So I set up a website to tell other patients that this wasn’t true, and lots of us were getting nasty side effects. We can get better care just DON’T be intimidated by NHS doctors; if you know you are experiencing ‘nasties’ which must be side effects, just stand your ground. A lot of us will be with you.

Dealing with the revolving door

During treatment, it seems problems keep hitting you. “It’s all been very satisfactory, hasn’t it?” beamed ‘Dr. 30 Second,’ when I went for my check-up at the end of weeks of radiotherapy treatment. He nearly fell off his chair when I spat back “NO!” He had prescribed Tamoxifen, then given me no help dealing with side effects, which included bloody skin lesions and temporary blindness – so I told him that I had been very disappointed in the standard of care, and we parted. Nurses told me he is called Dr. 30-second, as that’s all the attention he gives us. My website is about what happened next, and overcoming side effects caused by these hopefully effective but very strong drugs like Tamoxifen, Aromasin and Arimidex. Which I was told had NO side effects!

For those of you starting out on the treatment path today, medics now acknowledge that these drugs are very powerful, and new variants are much ‘friendlier’, so hopefully you won’t be hit.

In other countries, doctors have more time to deal with side effects, and this makes all the difference; their cancer patients live longer. But if you pay attention to your health, and ask questions, you should live as long! Truthful medics here admit that side effects are a problem – but the main problem in Britain is finding medical time to deal with these. As things work better in other countries, I have included examples of treatment abroad, which we can easily copy. Incidentally in the time I have been treated for cancer, we have dropped in the European survival league tables from 13th to 25th. This is shaming, yet no one in NHS England or any other quango seems the slightest bit concerned.

Hit by a ‘Double Whammy’

You get Cancer. You follow what Doctors tell you to do. Then you find the drugs you have been prescribed are making you ill. At first, I believed doctors and meekly accepted that my symptoms were NOT caused by drugs. Until I asked Revd. David Brown, The Royal Marsden’s Senior Chaplain at the time, who had kept all the notes from the Ethical Committee he was on that approved Tamoxifen. Each time I phoned about a symptom, he would look it up, and say yes, it was documented as a side effect, and even give me the percentage of patients who had reported this effect during trials. Yet the doctors would look me in the eye and tell me they had never seen what I was complaining about. Luckily I had David to tell me I was right and the doctors had selective amnesia. Scary. So much for the doctors. One wonders if they ever read up on clinical trials for the drugs they dish out to us. Recently the British cancer charity, Macmillan, produced a report, Cured – but at what cost – which stated that 25% of us who had taken Tamoxifen went on to develop major long-term side effects from this drug. Now, studies by respected American research centres, such as MD Anderson, Johns Hopkins, ASCO etc. confirm side effects we suffer are caused by drugs. Go on their websites to learn more.

NO – you are NOT alone. Fellow patients frequently contact me to say they have had the same side effects. And yes, the doctors had tried to deny they were caused by cancer drugs. Cancer treatment doesn’t make us lose brain cells, So why on earth do doctors think we are so stupid we will believe it and deny side effects when presented to them? We don’t lose our brain cells as a result of cancer – so I objected to my symptoms being brushed aside. Some doctors admit that colleagues are arrogant; perhaps this is because they are overworked so they don’t have time to deal with the paperwork and us. Something has to give!

Side Effects

• One doctor, more honest than the rest, said “you must realise these pills are like having mini-chemo for five years“.

I went and found so much that really helps, which I have posted under suitable Categories of the Blog page (see right-hand column)

A friend had dreadful hot flushes; her doctor didn’t do anything to help until one day during an examination she had an episode, and sweat poured off her in rivers. That made her doctor sit up and say “I never realised it was so bad”. But why didn’t he listen to her before? What’s wrong with listening to patients? Ever since Andrew Lansley (ex-British Minister of Health now working for Pharma company Roche) said that we had to be at the centre of treatment, and listened to, there has been a big industry teaching the NHS all about ‘involving patients in their care’. This makes huge profits for the companies running conferences for NHS staff, costing around £500 a day plus – who return home and carry on as before. So, we have to find our own solutions. Medics in Britain just don’t have time to treat problems – only to deal with the primary cause. With 10-minute appointments and only 6 QOFs (points) allocated for GP’s payment each time they see us (diabetes, dementia, etc. get up to 93 QOFs) it is easy to see why we are ignored. And 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 told a conference “some doctors in Britain are ‘barbarians’“, and said I could quote him!
• 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. Not unofficial websites set up just to make money.
• There are some weird sites, selling ‘cures’, and other money-making products that do nothing for us, and can even be dangerous. Go to About/Home/Our mission or similar headings to find out if they are official/medically approved, someone with an axe to grind or just out to make money.
• NB. If the site asks for money – it’s probably best avoided unless it’s for a donation to a charity of which you approve.
• Cancer helplines are getting better and can offer good advice.

European Solutions

WHO (World Health Organisation) and others all agree (statistics back them up) that cancer treatment is better in Europe. I travel to Europe with my job, and thought “we visit Museums to help improve our minds, so why not visit the local cancer centre to improve our health?” European tourist boards were proud to book me into their local cancer centre and introduced me to top medics who produced superb treatment. Most Tourist Boards are delighted to promote anything in their region, provided enquirers realise they have to pay for European medical care; although European hospitals generally charge far less than the NHS. They are incredibly helpful, and I learnt why Europe generally has a far better post-cancer survival rate. Sometimes you can get treatment abroad paid under the EHIC rules. But if you have to pay, often charges are below what we would have paid for a private consultation in Britain. e.g. In the UK the NHS charge £120+  for a DEXA scan (for Osteoporosis). In Italy, I was charged €50 (about £40). It just shows the way the NHS could be ripping us off in Britain.

Warning!

As I write about skincare, I was in a good position to write about dealing with the appalling skin we end up with as a side effect of the drugs we take. And I realised that not all chemicals are bad, and not all so-called ‘pure’ products are that. But anything I mention has either:

• been Clinically trialled,
• can be prescribed on the NHS,
• as far as I know is genuine about being pure or even organic, with a minimum of chemicals – but not all chemicals are bad.
• 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 reputable charity.

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, there is always the chance that a product that works well for others might not suit you, especially if you are on a cocktail of drugs.

• So take a list of ingredients of any product to your Oncology Nurse to look at
• Ask skincare Consultants to give you a patch test.

Then try the products, therapies and treatments – AND HAVE FUN!

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