Sunday, 14 August 2016

So many strong people..............

This is not about me, in fact, I feel humble, what I am battling with is nothing in comparison����..

very good friend of ours Jaki, has kept us up to date about a friend of hers, Dolly, lives in Mallorca and if / when you read and hear how she is coping with her life and cancer, it is inspiring. The YouTube clip is of Dolly and her boyfriend Andy, our friend�s son . https://youtu.be/oh_tI29NPrA
A truly remarkable brave young lady.




Jaki, our friend wrote in a recent email to us :
You are going through similar situations as so many friends and people I know.
Most doctors / oncologists seem to have few or no "feelings" when dealing with cancer victims which makes me really angry too. Dolly was told, coldly, that she would be dead within 2 months if she did not continue with chemo. She has had NO medical treatment since that day, over 1 year ago now! Her oncologist also told her that the chemo could kill her because, over the years, her 4 sessions of chemo has permanently damaged her whole body and bone-marrow. So sad and distressing after recently having her arm amputated to remove the cancer! She has coped so well, washing and styling her wig with one hand.

Another lady I know, Annemarie, who had breast cancer and went through Chemo, sent me these lines:
Discussions with consultants are at best draining, at worst so depressing and upsetting.  It's a relief to find someone who treats like you a fully functioning human being.
Saw your article about washing your wig.  First time is very nerve wracking, just like washing a precious newborn baby.  I only had one wig so no fallback position.  The advice I got was to turn the wig inside out, wash the inside with gentle baby shampoo, and rinse under the shower with cold water.  Hope that helps too.

Tony, who I have known and �loved� since I was 18 years old, has also been through hell and back:
What I found interesting was how little data is used to check up on people. I had nodular lymphocyte predominant Hodgkin's lymphoma (nlphl) which is relatively rare. They used to treat it as regular Hodgkin's (hence why quack in North Vancouver got it wrong) but recent developments illustrated it had more in common with non-Hodgkin�s. So they treat it now similarly. I asked the quack in Bath what the cure rate was in UK, as I had read up on it and only came across one test who had taken a specific cure, and after 6 years all 6 nlphl patients were in the clear. He replied that he kept his own records, but there was no central data bank for UK haematologists (Blood oncologists). He kept his own records and had so few people so it could not be reliable. A worldwide specialist in Vancouver (ironic since my oncologist did not refer me to him, just across the bridge) prescribed the same treatment, but also did not have many cases. He did have 20 years of data for Hodgkin's treatment, and for nlphl limited stage (mine had spread, so needed chemo full on). Looking back I can see how the guy in North Vancouver got it wrong, but what he is not excused for is giving me misleading information (or worse, he said I had Hodgkin's, probably didn't read the autopsy fully - he gave that impression) and not conceding he goofed - probably for legal reasons.

It seems to me that many doctors / consultants have lost the art of �empathy�, and the way they communicate with Cancer patients. It is sad, as this should be the easiest part of their profession. Just a friendly smile, an understanding nod,  a sign, they empathise what the patient is going through


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