I know how she does it: tips for how to cope with living with cancer

A couple of weeks ago, I heard an interview with Laura Vanderkam. She has written a book about successful business women and how they cope with being a mother.  It is called "I know how she does it".  I haven't read the book but the I was reminded of the title during the PLWC breakfast held 2 days ago.  (See previous blog).  After Dr Edwards had finished talking, Linda Greef started a discussion asking the women (and men) in the room how they coped with living with cancer.

The comments will be listed: I am afraid this blog won't do justice to the session!
- Spirituality/prayer
- Keep busy: this came from someone who ran the 2 oceans half marathon!  Quite remarkable even if you are completely healthy
- Positive thinking
- Become a volunteer and help others.  This came from a Reach for Recovery volunteer.  She stressed that sharing your experience with others helps you come to terms with the diagnosis
- Speak to other survivors
- Share your recovery with others
- Write a journal (Other women have suggested painting as an option)
- Count your blessings
- Live everyday as if it is your last day: you are responsible for your life
- Humour

Inevitably most of the people there were women however, one of the husbands said that it was really important to understand that the process was "our battle".

Linda, thank you once again for organising the PLWC breakfast!

The view from outside Simons restaurant


People Living with Cancer: metastatic cancer breakfast

Yesterday 25th July, PLWC hosted their annual breakfast dedicated to the needs of people living with metastatic cnacer.  The chosen venue was Simons Resaturant on Groot Constantia wine estate.

Dr Marc Maurel

Dr Marc Maurel, an oncologist from Rondebosch GVI oncology centre spoke first.  He lauded a multidisciplinary approach when planning the management for any person with cancer.  Everyone is an individual with unique needs. The goal of any management is to prolong quality life and he stressed that the symptoms from the treatment should not be worse than the symptoms from the disease.  Having talked about the role of radiotherapy, chemotherapy, endocrine therapy and targeted therapy, he spoke about immunotherapy.  Immunotherapy stimulates the body to react.  Already in use - for the  management of melanoma-  trials are ongoing looking at its usefulness in managing advanced breast cancer.

Hanne Muller and Jayme van Tonder: Slow Jack
A delicious breakfast and delightful entertainment from Slow Jack followed,  then Dr Lynn Edwards photo voice project.  This project, run by cancer buddies, asks cancer survivors to choose a photo that best depicts their journey of living with cancer. It is excellent, show casing benefits of descriptive research. It is national in scope and will assist campaigns for advocacy.

In terms of methodology - focus groups are asked specific "quality of life" questions.  Lynn's talk investigated sexual problems experienced by people living with cancer. Responses she received:
"live until I die by choice instead of dying all the while that I am living.."
"lost identity, invisible"
"Refocus on the important things: nature and family"
"Having cancer is like climbing stairs"
"People think you are busy dying not busy living"

When asked what approaches they found helpful:
"holistic approach"
"encourage conversation"

Linda led a discussion on how women coped and that will form the subject of my next blog.

In summing up, Dr Marc Maurel said medical people get most of our information from journals.  It is really important for us to get our information from our patients as well.

Well done Linda for organising such an excellent morning!

Linda Greef and Lynn Edwards


Symbolic flowers

A year ago, flight  MH17 crashed in Ukraine.  The exact cause of the crash is unknown. Two hundred and eighty three passengers and 15 crew members died.  One year later, the crash was remembered with some of the stories about the victims and other accounts regarding the circumstances around the tragedy.

Paul Mc Geogh, an Australian journalist  and Kate Garaghty, a photographer, gained access to the crash site. They knew that most of the relatives would face immense difficulty in getting through to a war zone and wanted to achieve something symbolic that may comfort the bereaved friends and relatives.  They decided to pick some of the abundant sunflowers blanketing the site.  Their  full story is available on line.

Nearly everyone I operate on is given flowers whilst in hospital but there isn't a synbolic flower associated with breast cancer.  How surprising.  Reading further, there seems to be some acceptance that pink would be the obvious colour and various flowers have been associated with recovery from breast cancer.  One surgeon in Cape Town, always gave a pink roses to any women who had had a breast operation.  Maybe a pink rose is a suitable flower to be associated with breast cancer.

The sunflower fund in Cape Town raises money by selling bandanas decorated with sunflowers every October. The money goes towards recruiting bone marrow donors for leukaemia patients.  The Canadian cancer association uses the yellow daffodil as their flower, apparently representing the end of winter and the begining of spring. (If that is the case, what about the lowly snowdrop?)

What flower would you nominate as being associated with breast cancer?  The Reach for Recovery conference held in 2013 in Cape Town, used the protea as their symbol.

Having just had lunch in my Cape Town garden and watched a sugar bird feast on an aloe, I think I would nominate the Aloe.


Bad dietary science

At the end of last year, John Bohannan was asked to concoct a study that would show a the problems with online open access scientific journals.  The story is long and definitely worth reading in full.  In summary, 15 people were divided into 3 groups: one group were put on a low carb diet, another on a low carb diet + 1.5 oz of chocolate and the third group ate normally.  They were weighed daily for 21 days and numerous parameters were measured.  The researchers spent the weekend playing with the numbers and showed (statistically) that those eating chocolate lost weight more quickly.

The study is a classic example of bad science.  There are too few people in the group, they are not followed up for long enough and too many parameters were measured to name but a few problems.  Any scientific journal would have thrown it out straight away..surely!

They managed to show that those eating additional chocolate lost weight faster (it was probably just a chance observation) and they submitted the paper to numerous fee paying open access journals.  Half rejected it straight away.  However, many took it and the "International Archives Medicine" published it without changing it.

From there, it was taken up by many newspapers and magazines including the Bild.  The world wants
to hear that they can eat chocolate and lose weight.  Good news in the dietary world travels fast.

What are the take home messages?  There are many points to be made;
-Breast cancer sites abound with dietary advice.  How many of the recommendations are based on sound science?
-Health reporters are often very sloppy and don't do their research.  Some years ago, I was quoted verbatim in the now defunct magazine "Real Simple" commenting on lung cancer.  I know nothing about lung cancer.  The researcher hadn't contacted me and had taken comments I had made about breast cancer and quoted them in an article about lung cancer: she had got her organs muddled up!
-People want to read what they want to hear.
-There are more and more open access journals being launched.  Many will charge a fee from the authors to get their papers published.  Not all of them are peer reviewed meaning not all of the the "science" is checked by experts.

Don't be fooled by what you read.