Having Fun After Cancer

verite3-200x300WHY WRITE THIS?

As Cancer treatment in hospital comes to an end, we want to get on with restoring our lives. So when daily visits to hospital finished, I thought I would get my life back.

BUT – no-one told me sometimes it can be difficult if not impossible to get your life back the way it was. No-one told me about one in four of us will have long-term side effects from chemotherapy, hormone therapy (pills) and/or radiotherapy. Until Macmillan published a report in called “Cured – but at what cost” highlighting unknown and unexpected problems caused by Tamoxifen (Hormone Therapy treatments); saying there are problems common to many of these treatments..

These problems can leave us with unexpected consequences.  Today, doctors are more careful and look out for signs, and sometimes carry out tests to see if there might be consequences.  I wasn’t told anything, but when I asked for help was told it was nothing to do with cancer drugs – doctors at The Royal Marsden Hospital even tried to blame side effects on my age! I had a fight to prove to them it was the drugs that caused the problems, and was frankly disgusted with the way my horrendous side effects were ignored.

Even after the report, it can be a struggle to get proper care in Britain .  Getting one’s ‘team’ to help us deal with consequences often isn’t easy.

The report highlighted what can happen, but missed the opportunity to suggest what could be done to treat side effects. So this was when I decided to write a website and include all the things I had learnt from helpful nurses and doctors (many abroad), and inexpensive to copy,  and to highlight how easy and inexpensive I found it to get treatment at some of Europe’s top cancer centres, and we can copy from them.

NEVER did I imagine so many others would write and say they were having same problems;  (see below).  At first I thought all the comments were just from friends – but soon found they were from strangers with the same probems. So thanks, everyone, for the vote of confidence.  Some mention alternative therapies;  although I don’t believe in them myself, if they work for others I always have a look as one can learn all the time.

Dealing with complex problems

Those of us who had problems often report staff are unhelpful and unsympathetic,  When pointing out  American research that warned us that side effects could manifest themselves years after we had finished treatment; and Cancer Helplines said they had lots of calls asking for help, I was dismissed as being too fond of using ‘Dr. Google’.  and told there was nothing that could be done.  This seemed to be the consensus across the British health service, although other countries acknowledge massive problems exist, and do something about treating them.  Some of us pointed this out – forcefully – and there was a woeful attempt in 2008 to set up the National Cancer Survivorship Initiative (ncsi.org.uk)/  This was so ‘successful’ it was closed down in 2013 and a statement on their website said:

“the success of The National Cancer Survivorship Initiative, the Living With and Beyond Cancer (LWBC) Programme was set up in June 2014. It is a two year partnership between NHS England and Macmillan Cancer Support aimed at embedding NCSI priority findings and recommendations into mainstream NHS commissioning and service provision”.  This has had such an impact that no-one seems to have heard of it.  Have you?

What did come out of this was a Holistic Needs Assessment.  Lovely little time-waster that is patronising and unhelpful if you have major problems.

So readers based in UK have to work hard to find their own solutions;  those of you who live in other countries, we envy you!  We are willing to learn, so are happy to read about YOUR new initiatives.

Way Forward

Currently the NHS is in such trouble that funds to help treat cancer survivors just aren’t there, so we’ll get even less help.  It is no good moaning about the fact we have the worst cancer care in Europe, we just need to realise we must get on with paying for it ourselves.  Think of it as your payment to national health to bring your contribution up to what you would pay if you were European.

But – for every ‘nasty’ there is probably a treatment that has been trialled successfully in another country – one with a better post-cancer survival rate than ours.  There are super products (developed after stringent testing and clinical trials) that help with side effects and make life easier and more fun.  I write about them elsewhere on this website.

We know medical staff are overworked, and Cancer patients often feel they can’t bother busy staff to find solutions.  The more I delved into survivorship issues and how to handle long-term side effects of drugs, the more I realised that drug side effects can cause the same basic problems, whatever cancer the drug was for.  So on this site readers can look for help with handling side effects under various categories;  e.g.  skincare deals with the dry, itchy skin so many drugs produce, etc.

On this site you will find lots of possible solutions to many side effects, used in different hospitals and cancer centres in France, Germany, Australia, Austria, Italy, USA etc. Some can even be accessed on the NHS, or from organisations such as Cancer Charities.

Warning!

I am not medically-qualified, but asked and asked questions of those who were – and found that the major American cancer hospitals and research centres are incredibly helpful with sharing information.  European oncologists aren’t so Internet-savvy, but go out of their way to help.

Good news

Nice therapies are not just for fun – but can serve a very practical purpose.  Using specially developed products and therapies such as massage,  skin care, etc. not only help with side effects, but also aids long-term recovery and gives you a ‘feel good’ boost. Hope some of the information here works for you.

But before you try, ask advice from your medical team.

aSometimes Doctors don’t have time to help, and you can be made to feel awkward asking questions.  Teenagers feel they must ‘get on with it’;  older people are told “it’s your age”.Phooey!

If doctors and nurses haven’t time to give individual attention to you – you have to work things out for yourself.  I found French Consultants reassuringly helpful when I went blind in one eye, then came out all over with bloody skin lesions, 3 days after starting on Tamoxifen.  They listened, and sorted things out, where British Oncologists had produced excuses from “I’ve never seen this before”, to “it’s your age!

No Frenchman would dare be so dismissive, and thanks to them I was helped – and have written about their treatments.. Because the French take time to help with side effects, I am sure that is why WHO rates French cancer treatment so highly.

On this website I mention lots of lovely things I was given in French, German and other European cancer centres (I had a wonderful job that took me around Europe, so took full advantage), plus research and medical information from Germany, USA,  Australia etc.  The same treatments and products are now becoming available all over the world and show that Having Fun can be part of cancer treatment. 

So why bother?

Why not?  If asking a few questions, using the internet or phone can get you relief from side effects – go for it.  The trick is to ask around to find solutions for clearing up or making side effects tolerable;  I found plenty,  and many were fun.  Using my brain cells (even though some doctors seem to think we lose them with cancer) and lots of research here and in cancer centres abroad, I found lovely products and therapies, particularly for skin problems, which had been clinically trialled or were recommended by hospitals – so they weren’t untested.

HAVING FUN AFTER CANCER was a fun quest for treatments helping me stay on the drugs. Who could object to having massage to relieve fatigue, or being handed a jar of a gorgeous skin cream and being told “use this twice a day for your skin”?  Not me!

So I hope this website is helpful, whatever medicinal drugs you are on.

HOW TO USE THIS SITE

Finding info

Choose a category (see column on right side of pages) for advice and possible solutions for problems with:

  • Body Skin (arms, body and legs)
  • Facial skin (what to do when drugs make us look old as the hills)
  • Hands, Feet and Hair
  • Products (yes, suppliers make money, but in return they really help)

What helps

Often the leaflets that come with the drugs will list possible side effects, then say “Ask your GP/doctor for advice on dealing with this”.   Most GPs seem too busy to help us,  although I do think it is time that the NHS paid them extra fees to handle cancer cases, as is done for diabetes, dementia. etc.

Europeans expect their doctors to deal with skin and other problems (sometimes British patients are too meek to ask for help!) So what worked for me when prescribed by doctors abroad may not work for you – but hey!  even if something I tried didn’t work for me, it was fun trying it out! And as long as the product you are trying is made by a reputable company, it’s highly unlikely to contain poisons anywhere near as harmful as those in our drugs!

Dept. Health

I did ask the Minister what we were doing to copy European care, so that our survival rates might improve.  “Nothing” was the reply.  This shows the sheer arrogance that we put up with in Britain, although all the wailing over Brexit makes me laugh.  We didn’t consult with European hospitals when we were IN Europe so why are we making a fuss now that we are quitting?

Before your medical team turns up their nose, everything I mention on this site has

  • been clinically trialled in France, USA, Australia or countries where post cancer treatment is superior to ours
  • Or been approved by FDA (Food and drug agencies) of the above countries
  • Or recommended as a treatment by charities such as Cancer Research UK, Macmillan etc. or offered as normal treatment to Europeans by their doctors
  • Or available on NHS prescription

Although there are probably many herbs and alternative treatments that have helped some people, I believe that research is the best path for help, so put my trust in what medical teams had produced abroad.  The only product that hasn’t had clinical trials will be chocolate – but I believe everyone deserves a treat – and that is mine!

And the next medic who smugly says “we are not allowed to recommend commercial products” (even though they are recommended by doctors in Europe) might make me guilty of assault.  The drugs they recommend we take are made by some of the most commercially profitable companies in the world!

My side effects

95% of us suffer from side effects, but as a journalist I knew whom to ask for advice, and where to go.

So – if you have dry, itchy skin, peeling nails, straw hair, brillo pad face skin, cracked feet or any other skin problem – see details of treatment on this website.

Many of the products recommended to French and American cancer patients are now coming into chemists in Britain.  We have to pay for them, but they work wonders on skin.  Now Nurses tell me “you do have lovely skin”.  No thanks to the NHS though.

Skincare IS important

What doctors don’t tell you (although some Nurses will) is that today’s drugs often produce horrible skin problems.  Countries abroad often co-operate with their Cancer charities to produce targeted skincare.  Some of the best that I use constantly are:

Living Nature which was developed in New Zealand with co-operation from their cancer authorities. Products are good, and it is relatively inexpensive – don’t know how they do it at the price.

La Roche Posay ia he French cancer skincare product, now launched in Britain; they knew that thousands of British women were already going on their website to order their products;  now we can get same canceer skincare as the French. 

IS Clinical had been developed in Washington Cancer Center.  The cosmetic surgery industry in Britain is mostly private;  they read results, and realised IS Clinical’s products would be excellent to help patients recovery from face lifts – so Harley Street knows all about the creams – we have to find out for ourselves.

So this website is for those of you who are fed up with doctors saying they can’t help and don’t know what to do about side effects.  Become an ‘Expert Patient’ and tell them! Apologies if I often repeat myself – but I have written the articles they way that I found helpful by repeating and analysing those phrases or things that explained how, where, when, what and why.

And HAVE FUN AFTER CANCER!

If you want to contact me email me at veritegreenbee@gmail.com

The contents of this website are not intended to replace professional medical advice. If you are ill, have a medical problem or question, please consult a doctor or physician..

All writing on this site is copyright of the author, and all photographs are copyright of the photographer. You may not copy or otherwise reproduce any of this material without prior written permission. All rights reserved.

  1. Anne Burrows October 6, 2009 at 4:04 pm Reply

    I was at the Lymphoedema AGM in September and was interested to hear you speak of your success with your Euro MP. As I live in an area without lymphoedema support I would be very grateful to be able to talk to you and get some advice as to what action I should take. I am useless with computers (a friend is doing this for me!) Is it possible for me to ring you – or you ring me.

    Best wishes
    Anne Burrows

  2. Doreen Twarkins November 8, 2009 at 4:50 pm Reply

    I am taking Femara for my 5 year treatment after a double mastectomy from breast cancer. I have hot flashes and night sweats as a result of the Femara. (I can not take Tamoxifen because I have a history of blood clots). I am also depressed so my medical oncologist prescribed Prozac for me to take. She said it will help with the hot flashes and night sweats in addition to the depression. Will the Prozac interfere with the estrogen-blocking effects of the Femara since the Prozac helps with the sweats?

  3. Cherie Mathews May 12, 2010 at 7:15 pm Reply

    healincomfort loves your website and would like to facebook and twitter it so women can find you. Verite, you are a strong, beautiful woman and a warrior for future patients.
    I love these statements by VERITE REILY COLLINS “this website is for those of you who are fed up with doctors saying they can’t help and don’t know what to do about side effects. Become an ‘Expert Patient’ and tell them!
    On this site you will find lots of possible solutions to many side effects, used in different hospitals and cancer centres in France, Germany, Australia and the USA. Some can be accessed on the NHS, or from organisations like Macmillan.”

    • Verite Reily Collins May 12, 2010 at 11:58 pm Reply

      Cherie
      Thank you for your comments, which please me enormously because I know you have the same attitude; when you found you were sent home without support of the correct, comfortable garments to wear, you got on, designed a suitable outfit, and now supply these to hospitals and cancer centres. Yur website tells more – http://www.healincomfort.com– and does what the name says! Best of luck!
      Verite

  4. Romesh May 24, 2010 at 11:15 pm Reply

    Hi,
    I am a Event Conceptuliser in India. It is my job design an event. To give it that selling edge. I was making a presentation for Glaxo Positive Health Awards. These are awards for people who have gone through some serious life threatening diseases and come out on the other side all hail and hearty.

    Just wanted to say your blog here helped me understand the life of such an individual. I was very easily able to advertise the event at the right places. You’ve been through a lot. I wish you were in India.

    I would have recommended you for the award myself 🙂 Please lemme know if you have any plans to come here. Please visit this antediluvian civilization and help us find hope in your new life

    Romesh Rustom

    • Verite Reily Collins May 25, 2010 at 11:33 am Reply

      Dear Romesh

      Thank you for the wonderful vote of confidence; I set up the website to try and help others understand that although the treatment can be a bore, there is plenty of life afterwards if one is lucky!

      I would dearly love to come to India, but don’t think your treatment is all that antediluvian. Firstly, I have found with cancer treatment that if a patient can be given tender loving care, this goes a long way to helping them get better. Seconlly, I hear fantastic things about your hospitals – and although I know they are few and far between, their influence can be far-reaching. Thirdly, I am a firm believer in nice therapies such as aromatherapy massages – I have been to Germany and found that their research is strongly in favour of a monthly massage – and this was developed in India.

      I think we have a lot to learn from what you are doing in India, and please let me know how your awards are going – If you have a report I would love to put it up (with photos) under the News category on the website.

      Best wishes,

      Verite

  5. Marlene MacPherson June 10, 2010 at 10:48 pm Reply

    Hello. Great Blog! I am a stage three breast Cancer survivor and a mother and out of treatment have launched a new cooking show Marlene’s Meal Makeovers. I would really appreciate any feedback that you may have my website is http://www.marlenesmealmakeovers.com and my blog is http://www.marlenemacpherson.blogspot.com. Best health to you and I hope all is well!

    • Verite Reily Collins June 11, 2010 at 1:22 am Reply

      Love your website – I just peeked, and ended up reading every category, so I suppose that means I am now a fan! Wish we had your TV show in Britain.
      Have signed up for newsletter, and look forward to trying your Chicken recipe.
      Verite

  6. Freda Ingall July 31, 2010 at 8:23 pm Reply

    Dear Verite
    It can be very helpful to people affected by cancer to indentify a local support group. In the Nottingham Cancer Patients and Carers Support Group we meet monthly to share friendship, we share our experience of cancer and the services we have used. We also share a wide range of knowledge and skills. Most members of this group are keen to know as much as possible about their individual form of cancer and the treatments available also the complimentary therapies available to help them.
    It is good to read upto date articles on research which we share. We receive free copies of Chris Woollams ICON which we also pass around members of the group and healthcare professionals who visit our group read them as well.
    I feel the more we learn about cancer diagnosis and modern treatments and the managements of cancers the less anxious and more confident we feel. Together we focus on developing a happy social life as we appreciate the joy of each day and the friends we make on our journey through life.
    So keep writing and keep sharing experiences and making lasting friendships.
    Best wishes
    Freda Ingall

  7. achievala August 15, 2010 at 8:06 am Reply

    t’s such a great site. imaginary, very interesting!!!

    ———–

    Gry

  8. hair growth August 21, 2010 at 6:18 am Reply

    Cool, Just wanted to respond. I thoroughly loved your post. Keep up the great workhair growth tips

  9. Hoomiapassice September 5, 2010 at 5:33 pm Reply

    Hi other members, i would just like to make an introduce myself to you members at after-cancer.com

    That is what we call a swell forum, I barely care to read out an entire forum section but this forum got my attention and believe me, That?s unusual.

    I was after some information and was searching on Google Russian for it. I visited each of the top 2 pages that came up but didn?t get any relevant result… I then luckily found your diamond message board in the dirt and thought to check it out. This is exactly what I was looking for – what a fantastic find!

    Thanks peeps at after-cancer.com and keep your fab effort up?!?

    Sports Nutrition Thermobol Creatine Weight Gain superdrol

  10. Toni September 14, 2010 at 2:14 am Reply

    What an amazingly informative article, thanks!
    This is so important and the progress that has been made in awareness, education, treatment and overall respect.
    Please have a look at the link and join us by adding your comment on the tremendous value of pink ribbon campaigns. Keep up the great work and stay well!!
    Thanks
    http://www.mmdnewswire.com/breast-cancer-awareness-10078.html
    Toni

  11. Graham Cable October 5, 2010 at 11:03 am Reply

    Hi Verite,
    Just a quick note to thank you for all the support you have given me offline. I strongly suspect we will keep in touch and I look forward to that.

    • Verite Reily Collins October 5, 2010 at 11:14 am Reply

      Graham,
      Am always happy to support fellow cancer survivors who come up with sensible ideas of how we can help ourselves. If we don’t it’s almost inevitable any support we get won’t be what we need.
      Verite,

  12. Graham Cable October 14, 2010 at 8:24 am Reply

    Hello again Verite,
    Thanks once again for taking the time to read my draft ‘The Cancer Survivor’s Confidence TricK’ and for your suggestion. I think what I’ll do is bolster my links page on http://www.moveonfromcancer.com (which will certainly carry a link to this wonderful site too).
    Would you mind if I also replicated the very useful links you have placed here too? I’ll let you know when both the guide and the links are finished.
    As a pointer to your readers, ‘The Cancer Survivor’s Confidence Trick’ outlines:
    • Why and how cancer can shatter our confidence and cause us to re-asses our lives (‘Confidence Trick’ Number 1).
    • Why it is that many cancer survivors experience a low after the initial euphoria of survival (‘Confidence Trick’ Number 2).
    • How to deal with this experience and how to rebuild your confidence (‘Confidence Trick’ Number 3).
    Perhaps some of your readers may find this of use – it will be available at http://www.moveonfromcancer.com very soon.
    Best regards for now,
    Graham

  13. Michelle Perk November 2, 2010 at 1:16 am Reply

    I was skimming through other blogs and yours caught my attention. I thought you might be interested to see what our school is doing to help fight breast cancer. We have raised over $10,000 in the past 3 weeks and 80% of our students are considered in poverty. It’s a very inspirational story that might help peoples spirits.

    http://www.1school1cause1goal.blogspot.com

    Best wishes,
    Michelle Perk (The teacher)
    Email: perkteach@gmail.com

  14. jean December 25, 2010 at 3:48 pm Reply

    thank goodness, what a spirit you got. i envy you for your positive attitude and i am certain that what kept you going and helped you overcome this dreadful disease. keep up the good work, you inspired me.

  15. accormloantee January 20, 2011 at 1:21 pm Reply

    I’ve been visiting your blog for a while now and I always find a gem in your new posts. Thanks for sharing.

  16. Como Recuperar a tu Pareja January 23, 2011 at 6:25 am Reply

    I hope you would not have reservations if I put up a part of HAVING FUN AFTER CANCER! — Verite Reily Collins writes about Cancer Side Effects on my univeristy blog?

    • Verite Reily Collins January 23, 2011 at 7:49 am Reply

      Thank you for a lovely compliment. Would be delighted if you put extracts on your blog – just mention the address (www.after-cancer.com).
      Verite

  17. onlinehealthmedicine January 31, 2011 at 2:48 am Reply

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  18. Tatiana Flaker February 3, 2011 at 7:17 pm Reply

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  19. Bulah Bridger February 10, 2011 at 7:06 am Reply

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  20. Cancer Treatment Centers of America February 10, 2011 at 2:42 pm Reply

    Asking questions, seeing different doctors and checking the internet all can be extremely helpful. All of these resources are here for us why not use them. If a doctor gives up on you and says that’s all we can do then move on to someone that can do more and is willing to invest their time into achieving more.

  21. Alexander Schadel February 15, 2011 at 6:21 pm Reply

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  22. Monet Sous February 28, 2011 at 8:28 am Reply

    I know this is truly boring and you are skipping to the next comment, but I just wanted to throw you a large thanks – you cleared up some things for me!

    • Verite Reily Collins February 28, 2011 at 9:52 am Reply

      No – it’s not boring, it’s lovely to have your comment, and others similar. When one writes something on the Internet you also get a lot of abuse – one posting that shocked me was a nurse working for a cancer charity, who asked “who does she think she is” when I reported on a meeting with a Government Minister whom her charity had arranged for me to meet! So thanks – your comment is much appreciated.
      Verite

  23. kiran dhami March 9, 2011 at 2:40 pm Reply

    hi, here is the video i was talking to you about yeterday:

    • Verite Reily Collins March 9, 2011 at 4:02 pm Reply

      For anyone who hasn’t seen this video, it gave me a lot to think about. The source is reputable – but we need to ask a lot more questions – main one is why aren’t we hearing about tests for this type of screening?
      Verite

  24. multi photo frames March 12, 2011 at 1:34 am Reply

    Excellent read, I just passed this onto a colleague who was doing a little research on that. And he actually bought me lunch because I found it for him smile So let me rephrase that: Thanks for lunch!

  25. xbox live code 1 monat March 20, 2011 at 5:46 am Reply

    Have you ever considered writing an ebook or guest authoring on other blogs? I have a blog centered on the same information you discuss and would really like to have you share some stories/information. I know my subscribers would value your work. If you’re even remotely interested, feel free to send me an email.

    • Verite Reily Collins March 22, 2011 at 2:11 pm Reply

      Currently I am writing a book about surviving after breast cancer, and am always willing to talk to anyone who wants to share information. Verite

  26. Helen March 25, 2011 at 3:22 am Reply

    What an inspirational lady you are, reading your blog you remind me of my late mother. she too was a kind, caring and courageous lady. A pure inspiration like yourself.
    xx

  27. Press Release Writing Service March 25, 2011 at 9:11 pm Reply

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  28. Vladlena Nyzhnik March 27, 2011 at 9:05 am Reply

    Dear Verite Reily Collins,
    I would like to say without any exaggeration that your site is great. It helps people to overcome the mortal disease. I should like to admit that, in many cases, people who have survived the stress of surgery and medical treatment, are in need of rehabilitation.
    I am an assistant of the professor Serhii Misyak MD. He is an expert in the field of rehabilitation of the oncological patients. He is the author of several books and articles on this theme. However, his works were published only in Russia. I shall be very grateful for your consultation and your help in the organization of the publication of his articles in Germany, England, USA and so on.
    I am clearly understanding that it is a very complicated affair which demands connections with editors. I am a newbie in this affair and I am expecting on your help, as far as you are the experienced writer and the author of books devoted to this topic.
    I shall try to contact you on the facebook.
    I am expecting on your understanding and your help.

    Best regards,

    Vladlena Nyzhnik

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  30. Deborah May 29, 2011 at 12:16 am Reply

    I have never, ever seen so much complaining in my life. She is not having fun after cancer. She is going on and on about it and reliving it. I am a former cancer patient. Former, as in I’ve moved on. Did she ever write what the cure for the side effects of Tamoxifen were? I couldn’t find any answers anywhere in there. Just whining and complaining.
    I have night sweats and a few other side effects but nothing all that bad.
    I thought this website would be about moving on and having fun. Not whining about how everything wasn’t up to your expectations.

    • Verite Reily Collins June 4, 2011 at 11:23 am Reply

      Deborah
      I often wonder if I am complaining too much, but I seriously think that we NEED to know what steps we can take for ourselves, and me writing about medically trialled products, used in other countries, surely is helpful? You say that ‘did she ever write about what the cure for side effects of Tamoxifen were?’ Perhaps you didn’t have time to read on, where I go into great detail about different products that are prescribed in French hospitals, and some now have NICE approval (at last) so we can get them here. I also write about loss of sight from Tamoxifen, and how I found out about what to do. With regard to Hot flushes, night sweats etc. do look under that category.
      Recently I have been writing about what is happening to NHS to reflect concerns from readers. Unless WE do something to stop what is proposed, cancer patients who might have secondaries, long-term effects, etc. are going to have a very, very raw deal. It sounds as if you have been very lucky, but there are many patients who speak and email me with horrendous stories of trying to survive, and I really worry about them. Many can’t speak up for themselves, but I have been putting petitions up on the site which I think have a chance of hitting home – and received a delightful thank you letter from one organiser saying that they had checked back and found a flood of signatories had come via after-cancer.
      Once the Health Bill becomes law – for better or worse – I shall go back to the fun events, nice new products to help us etc. But for the moment it is imperative that everyone lets their MP know what concerns they have about the Health Bill. As a matter of fact, I am all for involving private healthcare – but reading the fine print I suspect it will be big companies out to make mega-bucks, rather than the well-run local private hospitals. And incidentally, I joined our local LINk cancer group to try and help – and we have ended up best of friends and have a very jolly dinner after each meeting.
      Thank you for writing.
      Verite

  31. Sam June 4, 2011 at 11:13 am Reply

    GMC guidelines are clear on raising concerns but doctors are sceptical as time and again they face retribution and are left all alone at the mercy of the NHS Managers who then refer them to police, GMC and subject them to ostracism, horrifying investigating process, dismissal etc. I suggest the GMC guidelines lack clarity on real support after raising concerns as the PIDA don’t support adequatley because of a number of loop holes and health professionals can’t affort hefty legal costs as the Trade Unions hardly support a PIDA claim. Doctors opt to silence fearing further reprisals by the NHS Managers.

    GMC screening process should be robust and if a whistleblower provides evidence of raising concerns prior to complaints, he/she should not be referred to the FTP as it will send a wrong message to other doctors and will discourage them to speak up for their patients.

  32. Jackie June 12, 2011 at 1:39 am Reply

    Doctors are just too busy to pay attention to our special needs.

    I had been taking Tamoxifen for almost 5 years when I opted for a prophylactic hysterectomy/oophorectomy because of a new cancer incident in the family – making us fit the HNPCC cluster profile. None of my doctors ever suggested genetic testing, but I had requested for one and received the result 8 months prior to that family member’s colon cancer diagnosis.

    My family doctor had since viewed me as a hypochondriac. (He doesn’t know any of my family members nor their medical history.) But I’ve been seeing my oncologist’s most of the time and I received the ‘OK’ from him (I had requested it through my gynecologist.) My oncologist sent me a note after my appointment last fall that he wanted to make sure I was still on Tamoxifen. Knowing that he doesn’t like to be questioned, I looked up the medical database and retrieved abstracts about how Tamoxifen had been proven to have preventive effect even after the standard 5 years.

    There is something wrong with our medical care system. Had it not been my support group – where I had been exposed to the most current research and treatment method – I would not have been able to take actions to prevent future cancer incident. [The gynecological surgeon noted in the chart that there’s some hyperplesia observed in the endometrium…]

  33. Andrew Pelt July 16, 2011 at 3:55 am Reply

    i just wanted to thank you for this website,

  34. tea tree essential oil August 8, 2011 at 6:37 pm Reply

    Rarely do I encounter a blog that’s both educated and entertaining, and let me tell you, you could have hit the nail on the head. Your idea is outstanding; the difficulty is something that not enough individuals are speaking intelligently about. I am very satisfied that I stumbled throughout this in my quest for info referring to this.

  35. Aalyah Ibrahim. August 8, 2011 at 10:36 pm Reply

    I have always wanted to start a cancer support and i never knew how to. i wanted to start one because of all the dieng people everyday and the people who don’t have enough money to get treated. i would love to really raise allot of money and with peoples help i think i can.
    i would love for you to answer back to this and tell me how to.

    Thank you.
    -Aalyah.

    • Verite Reily Collins August 9, 2011 at 8:54 am Reply

      Aalyah
      All I can say is just write about what you feel. I wanted to tell others that we don’t have to accept that side effects from cancer drugs are ‘normal’; there are things we can do and products we can use that will help us, and so I wrote about them. I was careful to write about treatments and products that had been researched, recommended and/or used by doctors and hospitals – did not write about fruits, foods or theories that had no scientific fact. Gradually I began to realise that it is up to us survivors to learn more about cancer treatment, not only to help ourselves, but to do lobbying to improve things for others – hence the fact that I have started to write a lot about our NHS. Interestingly I get a huge amount of interest in our health service from North American readers, obviously not wanting to make the same mistakes we do. If you like to contact me at verite@greenbee.net and tell me which country you live in, I could write back and tell you of anything that might be of particular interest, and tell me if you start a website so I can mention it in Contacts. And good luck. Verite

  36. Sweda August 18, 2011 at 3:08 pm Reply

    They’ve proven over and over that a positive attitude does yield more favorable medical outcomes. Interesting article and I think it’s important to live life even after cancer.

  37. Emma September 14, 2011 at 6:09 am Reply

    Hi Vertie,

    Great site! Thank you so much.

    I thought you might be interested to know there are a number of studies showing magnetic fields of just 12mG (1.2µT) block the ability of tamoxifen to control the growth of human breast cancer cells (see references below).

    Anyone taking Tamoxifen might want to consider reducing their EMF exposures as much as possible –convalesce away from power lines, TV and radio masts, mobile phone antennas, and minimise EMF exposures at home. The main EMF sources for most people are from mobile and cordless phones, laptops and wifi, hair dryers, microwaves and electric blankets.

    The Bioiniative report reviews over 2000 studies linking electromagnetic exposures (EMF) to brain tumors (section 10), childhood cancers (section 11), breast cancer (sections 12 and 13). http://bioinitiative.org/freeaccess/report/index.htm

    There is also a useful article review article from 2009:
    http://wifiinschools.org.uk/resources/Sage+and+Carpenter+2009.pdf

    And an interesting post about the research on Tamoxifen and magnetic fields: http://www.microwavenews.com/nc_nov2005.html

    Kind regards,
    Emma

    Girgert, et al., (2005) Induction of tamoxifen resistance in breast cancer cells by ELF electromagnetic fields, Biochem. Biophys. Res. Commun.336 1144–1149.
    Harland, et al., (1997) Environmental magnetic fields inhibit the antiproliferative action of tamoxifen and melatonin in a human breast cancer cell line, Bioelectromagnetics 18 555–562.
    Harland, et al., (1999) Evidence for a slow time-scale of interaction for magnetic fields inhibiting tamoxifen’s antiproliferative action in human breast cancer cells, Cell Biochem. Biophys. 31 (3) 295–306.
    R.P. Liburdy, et al., Magnetic Fields, melatonin, tamoxifen and human breast cancer cell growth, in: R.G. Stevens, B.W. Wilson, L.E. Anderson (Eds.), (1997). The Melatonin Hypothesis—Breast Cancer and Use of Electric Power, Battelle Press, Columbus, Richland, pp. 669–700.
    Luben, et al.,(1998). Independent replication of 60-Hz 1.2_T EMF effects on melatonin and tamoxifen responses of MCF-7 cells in vitro, in: Abstract A-3.4, Bioelectromagnetics Society Annual Meeting, St. Pete Beach, FL, June 7–11, pp. 17–18.

  38. Christine Green September 27, 2011 at 6:45 pm Reply

    Dear Verite and others,

    Being myself an observer of Massage Therapy and after my own illnesses, decide to learn more about Reflexology and Relaxation therapies.
    I did 2 courses before and the final Diploma last year, from which I learnt so much.
    I was an almost invalid – 3 years of physio-therapies di dnot help nor osteopathy. Therefore LET US SAY TO PATIENTS – PUT NUMBER ONE FIRST_ wHO Is NUMBER 1- ME THE PATIENT.
    Verite rightly said – Tender Loviang Care – Post operative and pre- operative patients for cancers or other illnesses, do need that encouragement. Put Number one first – forget about everything else for a moment, take a quiet time – do the things you want to do, and have never been able to do – the theatre, travel, fine clothing, foods, OK yea, DO THE THINGS THAT MAKE US HAPPY. DO THE THINGS THAT MAKE US FEEL GOOD.
    Gentle massage therapy and gently reflexology treatment- can be tried, for the feel good factor anything to do with medicines – I cannot comment on .  chrstngrn7@aol.com

  39. Barbara February 3, 2012 at 11:42 pm Reply

    I have gone through chemo and radiation, but I now keep getting colds and other ailments, How can I build up my immune system. Tired of being sick. I also am on tamoxifen.

    • Verite Reily Collins February 4, 2012 at 6:28 am Reply

      Barbara
      I think every cancer survivor feels as you do, and finds it difficult to get help. Firstly, if you would like to email me at verite@greenbee.net, I can give you some ideas, BUT these are things that worked for me so you may want to run them past your medical team. Secondly, we all need rest. We think it is giving in to have an afternoon nap, but we should. Thirdly, I am sure you are sick and fed up with people telling you what to eat, so instead find some little treats and have one! Tamoxifen is a wonder drug, so remember that your current ‘under the weather’ feeling is a side effect – but do tell your medical team. Good luck. Verite

  40. Patti May 27, 2012 at 9:10 pm Reply

    Hi Verite,

    There is research showing that where cancer exists, radio waves may accelerate its growth.

    According to Joines et al, “In general, at all frequencies tested [50 to 900 MHz], both conductivity and relative permittivity were greater in malignant tissue than in normal tissue of the same type. For tissues of the same type, the differences in electrical properties from normal to malignant were least for kidney (about 6% and 4% average differences over the frequency range in permittivity and conductivity, respectively), and these differences were the greatest for mammary gland (about 233% and 577% average differences in permittivity and conductivity, respectively)

    Reference: Joines W.T., Zhang Y., Chenxing L., Jirtle R.L. (1993)The measured electrical properties of normal and malignant human tissues from 50 to 900 MHz Medical physics, Vol. 21, April 1994, p.547-550.

    You’d think that cancer patients would be advised not to use mobile phones, wifi etc., wouldn’t you?

  41. barrie June 16, 2012 at 9:40 am Reply

    Hi Verite
    Interesting conference. As a Computer/Database developer interesting as a cancer survivor not so much.
    But everyone should also be working on survivorship as a real issue.
    I noticed you question was not really answered
    Dave want you to email him
    See you soon
    Barrie

  42. Wilfredo Aqueron August 3, 2012 at 11:44 am Reply

    My name is Wilfredo Aqueron, I am a Cancer patient as well. I was diagnosed with a Defuse Pontine Glioma (June, 2008). I remember when I was diagnosed I spend days looking for other survivors who have beaten the odds. My intention is to create a documentary that will collect some of these survivors. I want to provide hope.
    The only thing that I am asking is for you to check my campaign page and help me do my documentary.

    http://www.indiegogo.com/thankstomycancer

    • veritercollins July 29, 2013 at 11:29 am Reply

      Most of the products that I mention under Skincare will help with the itching we got. Try discussing these with your chrmist or nurse and ask for their advice.
      Verite

  43. Tregioriete September 6, 2012 at 6:26 pm Reply

    I feel this is among the such a lot important information for me. And i am happy reading your article. But want to statement on few normal issues, The site style is perfect, the articles is truly nice : D. Good activity, cheers We are a group of volunteers and opening a new scheme in our community. Your site provided us with useful info to paintings on. You have done a formidable task and our entire community will likely be grateful to you. .

  44. Rudee January 19, 2013 at 10:22 pm Reply

    I had such bad side effects of the cancer drug after breast cancer. I was put on three different drugs. I asked the doctor how do you know the drug really helps. He said we know before the cancer doesn’t come back if you take it for 5 years. I am not trying to recommend anyone do what I did, but I took myself off all the drugs. My beast cancer doctor told me to exercise, take calcium and vit. D3 and I will be fine. I also do acupuncture every week. I have also have done a lot of reading on acidic and alkaline foods and how they impact our bodies. The more alkaline your body is the less chance of diseases growing. I am cancer free for 5 years. I also think a good attitude plays an important rule.

  45. Raean January 27, 2013 at 12:57 am Reply

    Hello I have Breast cancer just finishing radeation soon Have you hurd of Any one who has Lupus that has takin Tamoxifin?
    I cant find anything hear I am trying to decide what to do.
    Any Help would be Wounderfull.
    Thank you for your time.
    Raean

  46. Verite Reily Collins October 10, 2012 at 6:58 pm Reply

    Thank you for comments. Can I say that I know what I am talking about, as I am a patient – and so often no-one asks us for our comments!
    Verite

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