CANCER SURVIVORSHIPS

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           ‘Cancer Blog of the Year’

                                                                     Winner!

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Cancer Care should have been a doddle; after I had spent a year in Stanmore Orthopaedic Hospital with Polio, everyone helped me get back on my feet, so I walked out of there.

I expected the same “let’s work together to beat this” attitude when it came to overcoming cancer. But this time, I wasn’t prepared for today’s NHS Conveyor Belt treatment: i.e. the ‘clinic’ system where instead of seeing ‘your’ specialist you could see anyone, And what seemed to be the unhelpful ‘brushing aside attitude’  when side effects from cancer treatment kicked in.  And TLC seemed non-existent. 

Communism

Nor was I prepared for what Prof. Karol Sikora, the cancer guru, calls

the last bastion of Communism in the Western world“:

the NHS Appointments system.

 

I came across the Communist ethos just this week; having had a huge scare with skin lesions appearing all over my body three days after starting Tamoxifen. When recently I came out in a red rash all over my elbow – painful and unsightly – plus little itchy red spots,  I naturally phoned for an appointment to see the wonderful dermatologist I am under.

Yes, I could see the doctor –  in three months.

But what do I do in the meantime? And suppose the rash has cleared up by then?

Down the telephone line came the unspoken suggestion that it was up to me to go privately and see the dermatologist before the rash became a problem.  That was the best the NHS could offer;  just like in the old days under Communism in Eastern Europe.  Pay up or shut up.

Have noticed more and more that the NHS is trying to encourage us to go privately.- again back to the Communist system.

See more of Sikora’s sage sayings under https://aftercancers.com/2016/05/karol-sikoras-tips-on-dealing-with-the-nhs/

Tamoxifen

After I was put on this hormonal drug

  • I woke up blind in one eye (limited sight eventually came back)
    Came out with bloody peeling skin and blisters all over  – yet the hospital denied that these were caused by Tamoxifen. I was changed to Aromasin, then Arimidex, and had more side effects – even nastier..But I was still told “you are the only patient who has these problems. 
    Years after, late effects still crop up
  • no-one warned me what might happen. 
  • I expected to work WITH the team looking after me, but was shocked to be told by my Surgeon, “well, you are alive” and he didn’t know what treatment would help.

This defeatist attitude seems to have permeated today’s NHS, but would never have been allowed by Sister at Stanmore. The once-superb NHS service seems to have crumbled, but I was incredibly lucky that my dogs had made friends with Nigel, the dog belonging to Rev. David Brown, Senior Chaplain at the Royal Marsden Hospital.  He had been on the Ethical Committee that originally approved Tamoxifen, and told me my side effects had been well-reported, particularly amongst European and American oncologists.

It wasn’t until Macmillan published its report “Cured – but at what cost” in 2013 that I realised I was NOT the only person complaining of side effects from drugs.  Apparently 25% of cancer patients get them to a lesser or greater extent.

It’s a sad reflection on how today’s NHS has been left behind;  so Britain has some of worst post-cancer survival rates – bottom of the European league for most cancers.  (National Audit Office, World Health Organisation, etc.)

David’s network of contacts was immense;  I would report a side effect, and he would say “you should go and see So-and-so – they are the experts”.  As my job took me all over Europe, I was able to tap in to the best treatment for whatever side effect was hitting me.

Today, I can’t travel so easily, so am learning to dig out those medics in London who are intrigued and interested in helping us survivors who are reckoned to have long term side effects .  

World Health Organisation (WHO)

This organisation is the Public Health arm of the United Nations, and places the UK way down at the bottom of European cancer survival rates:  25th out of 27 !!! Shocking!.

So, determined to overcome the often-frightening long term side effects from cancer treatment, I set up this website to tell others what I found worked for me.

Warning!  I am NOT medically qualified.

  1.  I write about treatments I have learned about, are carried out in hospitals or medical centres, sometimes in other countries with better post-cancer survival rates than in UK.
  2. Products that have been approved by authorities such as cancer societies in other countries – many have undergone Clinical trials.
  3. Or what has been recommended to me by a medical professional, by helpful doctors and nurses in Britain and other countries.
Macmillan’s report:  Cured – but at what cost? says about 25% of those being treated for cancer will need on-going treatment.  But no mention of what they are doing to ensure that the NHS acknowledges our problems, or lobbies for improvement in our care.

In Britain, we have the research organisation CANCER RESEARCH UK (CRUK). 

This is research organisation is highly-respected all over the world, and known as one of best. But their scientists and medical professionals say that the chains of communication out from CRUK fall down, and we in UK don’t get the benefits we should.  Add to this the arrogance exhibited by medics, and our treatment is woefully lacking.

So I hope that this website will help you realise you are not being demanding if you think there are things you can do to handle long-term side effects.

You can take charge – and start asking questions  

Doctors admit those of us who ask questions and demand better treatment LIVE LONGER.

I am sure our woeful survival statistics would improve if NHS doctors copied some of the treatment available to cancer patients in Europe – giving us the clinically-trialled products and treatments that are offered there to help with side effects.  A recent report said that Europeans probably received less drugs, but those they were given were more up-to-date.

In Europe  I wasn’t once put on expensive drugs or pills, but was treated with common-sense; sadly not so common here.
With all the cuts that are being foisted on the NHS, I have started to write practical advice about how WE can ensure we get better care in the NHS.  (See NHS Watch CategoryRemember, In Britain, medics are often too busy dealing with basics, and have no time to help once you are off the treatment conveyor belt. Europeans pay a bit more for treatment but live longer post-cancer.
I am sure one reason why we have poor post-cancer survival rates is because we find it difficult to have side effects treated.
Prof. Sir Magdi Yakoub has said, ‘We in the medical profession…have to listen more to our patients”.

 

CONTACT ME    verite@greenbee.net

Hobbies:  I write books about dogs :  “About the Border Terrier”, “999 and other working dogs”

Tel:  +44 (0)20 7584 4555

Address: Please send an email to me in first instance, and I am happy to send my address for bonafide enquiries:

verite@greenbee.net

Comments

effects were qualified as either not bothersome or impossible to have (was I faking it? you don’t get pain in your chemo arm that wakes you up just for the fun of it!). I was lucky because as a doctor I was able to monitor myself most of the time and to search the internet for information. I came across most of the help you mention, acupuncture, massage, diet and they helped me tremendously. I do not live far from a Maggie centre and they were great but what about those afraid to ask, too tired to move or unaware. Where do they find the support?
  1. By the way, I like your enthusiasm about the French medical care but we also have our non listeners.
    Thanks for all the info on your website, I wish I had found it when I started my journey, it would have saved me time.

    • Verite Reily Collins June 2, 2010 at 10:50 am Reply

      Sylvie, Thank you for writing, which I take as a great compliment. As you say, what about those afraid to ask – I fear that many of those just get discouraged, and eventually fade away. The statistic that 60% of UK patients come off hormonal drugs because of side effects shocks me – but doesn’t seem to worry the doctors! But they are one of the reasons why I started the web site, to try and reach out to them and say there ARE solutions.
      As you say, I know that the French system isn’t all roses, but overall I am very impressed. I did find one person who complained bitterly though. He had had to wait six hours in A & E to be seen when he broke his leg. Afterwards his wife told me (and you will understand this) he broke it on August 1st!
      Do go and see the latest story I have posted on NHS Watch – re doctor-speak ! http://www.after-cancer.com/NHS-watch. Best wishes, and if OK with you I will put you on my list to let you know when I have more stories up. Verite.

  2. Jacqui Burke January 14, 2011 at 10:20 am Reply

    Yet another really sensible blog Verity. Thank you for the trouble you take helping us to understand what the government is proposing and raising such important issues. I have tweeted a link to your blog to all my followers on Twitter. Many thanks. Jacqui

    • Verite Reily Collins January 14, 2011 at 4:26 pm Reply

      Jacqui
      Thank you. You have no idea what pleasure this comment gives me, as I sit here wondering if I am the only one who doesn’t think politicians have brilliant ideas! I am sure they are very well-meaning people – but somehow they do seem to lose touch with reality once they are surrounded by all their hangers-on in the Whitehall corridors!
      Verite

  3. Jane Rubinstein February 18, 2011 at 5:18 pm Reply

    If any of your readers might be interested in how the genetic variant found in recent research to be associated with Breast Density on Mammograms is related to the individual data in Health and Traits reports provided to personal genomic customers of 23andMe, please feel free to provide this link or reprint this SNPwatch.
    Regards,
    Jane Rubinstein

    http://spittoon.23andme.com/2011/02/16/snpwatch-researchers-identify-variant-associated-with-breast-density/

    SNPwatch: Researchers Identify Variant Associated with Breast Density
    Published by GeoffB at 10:06 am under SNPwatch

    Mammography is a common imaging method used to screen for breast cancer, the second most common cancer in women. The result of a mammogram is a simple black and white image of the tissues that make up the breast. But even an image displaying apparently healthy breast tissue may still show signs that could be useful in assessing risk for breast cancer. It turns out that density — the proportion of dense (white) areas that appear on a mammogram — matters. In the last decade, research has revealed that women with high mammographic density (>75% dense tissue on a mammogram) have four to five times higher risk for breast cancer.
    Characteristics such as age and BMI can affect mammographic density, but it’s estimated that over 60% of the variability in mammographic density is due to genetic factors. In an effort to identify these genetic factors, a multi-national team of researchers searched for genetic variants linked to this trait in 7,712 European women with known breast density. In results published recently in Nature Genetics, the researchers identified a variant in a gene called ZNF365 that is correlated with breast density. They found that each copy of an A at rs10995190 was associated with a 2% decrease in mammographic density. The researchers also found that each copy of an A at rs10995190 is also associated with slightly lower odds of developing breast cancer. This association of rs10995190 with breast cancer replicated a similar result found by another research group in 2010.
    (23andMe customers can view their results for mammographic breast density in their Breast Cancer Risk Modifiers report, or check their data for rs10995190 using the Browse Raw Data feature.)
    While the authors state that the effects of rs10995190 may only account for a fraction of the of the variability in mammographic density, they note that this seemingly small decrease in density is also associated with a meaningful decrease in breast cancer risk. Although the data from this study suggests that genetic variation in ZNF365 could be affecting breast cancer risk by influencing mammographic density, further research is required to confirm this finding and to determine the other genetic factors that are involved.
    SNPwatch gives you the latest news about research linking various traits and conditions to individual genetic variations. These studies are exciting because they offer a glimpse into how genetics may affect our bodies and health; but in most cases, more work is needed before this research can provide information of value to individuals. For that reason it is important to remember that like all information we provide, the studies we describe in SNPwatch are for research and educational purposes only. SNPwatch is not intended to be a substitute for professional medical advice; you should always seek the advice of your physician or other appropriate healthcare professional with any questions you may have regarding diagnosis, cure, treatment or prevention of any disease or other medical condition.
    ShareThis
    Tags: breast cancer, mammography, screening

  4. Andrey Bogdan December 18, 2011 at 8:04 pm Reply

    Hello Verite,

    In Russian your name means believe. And I am believing in you. I agree with you about the side effects of Tamoxifen. Moreover, most medicines have a huge set of side effects.

    If we are consumers of this medicines and if we have no side effects from them, who will buy other medicines?

    I wanted to ask about chemotherapy, but rather about the people of pension age, what do you think pensioners are they needed for State?

    Do that side effects of chemotherapy kills most people before the cancer?

    Who from the doctors are really trying to solve the problem of side effects of the medicines that is prescribed by them?

    Are there exist medicines that can eliminate these side effects?

    Are there medicines that can protect healthy cells from damage by toxins?

    If exist medicine that is able to keep protective immune function at a high level during and after chemotherapy?

    Is there a medication that is capable to destroy only the tumor (mutated) cells, reduce intoxication, which have no side effects?

    How it can be possible to eliminate intoxication for the patients with cancer?

    With great respect and gratitude, Andrey Bogdan

  5. Joey Burdick January 26, 2012 at 12:36 am Reply

    Thank you ever so for you article.Really looking forward to read more. Fantastic.

  6. Adeline Reid May 13, 2012 at 3:21 pm Reply

    Thank you so much for all the information I receive from you .our cancer support Group of 40 members appreciate the knowledge .
    You look wonderful with the make over at Harrods and the wig is superb

  7. simone September 28, 2012 at 3:53 pm Reply

    dear Verite,
    I have come across your amazing website as i was looking for some intervention group in the area of kensington and chelsea where i could pilot a prevention program on osteoporosis. As part on my 3rd year bachelor degree in nutrition, i would like to develop a pilot program which would inform young girls of the borough about the importance of building strong bones through healthy eating and exercice.
    I live in the area and i have a strong interest in the disease as my mother died a few years ago in France,following hip fracture and many years of agonising pain. My GP in London was not very supportive in my request on how to prevent the disease from developing later in life. I believe prevention is key in reducing NHS ever rising cost of an ageing population. I would be very grateful if you could help in this project just by giving me some advise? Simone Faby

  8. Freda E Ingall June 26, 2015 at 4:12 pm Reply

    Dear Verite ,
    The last 5 months have been a hectic time ,when our focus has been on members of our family and members of our group who are like close family to us. I have just got round to reading your Blog . What a very Challenging time you have had but your courage and strength has kept you focused . I know you are a great inspiration to may people.
    Best wishes for your continue work and success.
    ken and Freda Ingall Nottingham

    • veriterc June 28, 2015 at 5:46 am Reply

      Thank you for lovely comments – but I just reflect what so many of us experience. They never tell you what to do if things go wrong – which I think they should!

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