So sad today

There are almost no words, but I feel I must pay tribute to the brave people, and their friends and families, who have lost their fight against cancer in the last few days. Donna Summer, Robin Gibb, and Ellie Jeffery. Donna Summer and Robin Gibb gave me the soundtrack to my teenage years. Ellie's story has dominated my conscience since Mom died in August last year. 

I discovered Ellie's blog quite by chance and I was immediately struck by the honesty of her writing. Ellie died on Friday. She was just 29 years old. This is Ellie's blog, with a final entry written by Tom, who she was going marry in June.

RIP.

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My blog in 2012

So, you may be wondering how much more can I write about Mom's cancer. Well, in case you haven't been paying attention, Living with Mom's cancer is all about how we as a society or community deal with cancer in people we know and love. Its bigger than Mom now, and that is very exciting.

Sunset, 2010, Lesley Beeton

Friends have heard me going on about this for some time now, so they will be pleased to know that 2012 is the Year of Action. Mumsnet Bloggers Network have been asking bloggers about our hopes and plans for our blogs in 2012. Some have said they want to get more readers, yes, of course. Some want a publishing deal, wow, yes please. I would like to use my blog to press for changes in care for cancer patients in hospital.

Oncology is mostly done on an outpatient basis, so patients come in for blood tests and if everything is OK, will go for chemo or radiotherapy. Almost everyone will have a bad cycle of treatment, however, which will mean a hospital stay to stabilise things before the next onslaught. I was reminded of this when I read Ellie Jeffery's new post about her latest miserable stay in hospital. I recognised in Ellie's description some of what we experienced when Mom was in hospital. There is no easy way for bed managers to find exactly the right place for a poorly cancer patient. Sometimes, cancer patients have respiratory or cardiac or other medical problems, and will need to be cared for by these specialists. You might expect that the oncologist will be aware of this, but not in the NHS. The wonderful cancer specialist nurses do their best to keep cancer patients well cared for, but it is very difficult to do.

I observed some first class nursing, but also some less than average nursing. That is to be expected. What I would like to see is a cancer patient support team, not reliant on nurses and doctors, but a human approach. Some one who understands the environment of the cancer patient, who has experience of their fears and concerns, and who can raise these issues with the clinical team. There is little or no emotional support for in-hospital cancer patients. The clinical teams are just too busy with very ill patients.

I would like to explore the possibility of setting up a pilot program and survey to understand how this can fit into the NHS cancer patient in-hospital care, and with this is mind, my resolution for 2012 is to use this blog to generate interest in and awareness of my endeavour.

I would be very grateful for your comments.

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HOW LONG HAVE I GOT?

That's a question Mom never asked, although she really wanted to know the answer. Sadly, the prognosis for Mom's lung cancer was six to eight months from diagnosis, even with chemotherapy treatment, and that hasn't changed in over twenty years. It's not through lack of trying to find better treatments for small cell lung cancer, it's simply that by the time it has been diagnosed, it has often spread beyond the lungs and chest cavity and therefore surgery is not an option.

A report this morning shouts the headline that median cancer survival has increased to six years over the last forty years. That means that roughly half of all cancer sufferers will survive for six years after diagnosis. Is this worth shouting about? Some people will live longer than this and die of something other than cancer, but some people will not live past the first year following diagnosis. It's a cruel lottery.

Ellie Jeffery has updated her blog today and she is starting a new chemotherapy drug to help her fight off secondary breast cancer which has spread to her brain. Ellie is twenty-eight years old. The statistics for this drug, eribulin, show a life expectancy of 13.1 months compared to 10.6 months on an established drug.

Keep Ellie in your thoughts.

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TWO STORIES OF HOPE

Although Mom died from her cancer, there will always be inspirational stories to tell. These are just two that I have found. Please read their stories and spread the word.


http://writtenoff.net/
http://kriskancer.squarespace.com/