“There, there” and “keep your chin up” don’t quite cut it these days

January 18, 2016 by mariemcw 1 Comment

One of our Cancer, Older People and Advocacy programme volunteer coordinators recently wrote the following post:

As a volunteer co-ordinator for one of the Cancer, Older People and Advocacy projects I would like to share a personal story with you today.

In September 2015 my best friend rang me up for what I thought was our usual weekly chat. We have known each other since college and she knew what our family went through when my father passed away over ten years ago as a result of a very aggressive brain tumour. Whilst we were not particularly close at that time I know I could have called on her had I felt the need.  This particular phone call was to tell me that her estranged sister had been rushed into hospital via A & E with what turned out to be a brain tumour.  The family were all in shock and as a very successful recently single woman, it brought home to my friend, the reality of living alone.  I am on hand when she needs me and I have been able to support her as and when she needs. It’s all done at her pace and when she feels the need to pick up the phone or come over to visit.

A couple of days later another close friend, informed me that her aunt had been diagnosed with bowel cancer.  She had been unwell for a few months but not felt the need to go to the doctors as she thought it was just a bit of constipation.  Sadly this story ended quite abruptly just before Christmas when she passed away at home with her family and friends around her.  Funeral arrangements were rushed through as it was all rather sudden, no one had even discussed any of this as they were not expecting it.

The third part of this story (everything comes in threes) is about another very dear friend who had a breast cancer diagnosis about eight years ago.  She is a survivor and has since retired and try as I might I couldn’t get her to join our project – I knew she would make a brilliant advocate!  Her reason was that she had done volunteering all of her life and she simply wanted to enjoy not having to go to work, to enjoy her ever growing family and friends and to do lots of painting. 

We had planned a trip down to South Wales in September and as I hadn’t heard from her I rang the house to check what the plans were.  I spoke to her partner who told me she had been diagnosed with Inflammatory Breast Cancer and the trip was off.  I certainly didn’t argue with that and we agreed that I would visit whenever she felt up to it.  Things have progressed quickly and she has been informed she is Stage 4. In her words “At stage 4 the horse is already out of the stable”.

We have spoken lots on the phone, usually early morning when I know she is awake and usually to laugh at some of the posts on her Facebook page!  For goodness sake, if broccoli and chicken soup were the answer we would be rid of this awful cancer.  “There, there” and “keep your chin up” don’t quite cut it these days.

I suppose the point of sharing this is that everyone’s journey is completely different.  For some it is far too short for anyone to make a huge difference. For others it is a complete shock and they have to take on so much information that they never even knew existed, let alone have to deal with.  Then we have the likes of my friend with Inflammatory Breast Cancer.  I spent the weekend with her and her partner, there was dust where there hadn’t been dust before, clothes drying on the radiators, we prepared and ate dinner in the kitchen (not at the beautifully laid dining table) and we drank low alcohol wine! Unheard of!  We sat in our pyjamas till about 2pm on the Sunday, we drank copious amounts of tea and coffee and we laughed.  There’s no great rush to fulfil bucket lists, no urgency to do the housework, lots of time for family and friends and lots of tissues to wipe away tears of sorrow and tears of laughter. 

I am going to be there for her, on the end of the phone if that’s what she wants, responding to an email if she wants any information and I can jump on the train if she wants company.  This I doubt will be requested often as in her words, she is the matriarch of a huge family (including ex-husbands and new wives) who love her and will do anything they can to make the journey as easy as possible.  Her advocates will be her family and friends, they will make the lists, check calendars, arrange appointments, organise prescription deliveries, hold her hand, ask the questions, investigate recipes, send links to websites, make her laugh and generally do what needs to be done.

Then I am back at work. The people who use our service don’t have what my three friends and their families have.  They are expected to ask their own questions, organise their own diaries and transport, sit alone on wards waiting for chemo, cook their own meals which often they won’t eat and end up throwing away, explain to call centres in faraway places they don’t want to claim PPI…….. They are dealing with all this and more on their own.  So that I suppose, is why I am so passionate about the work we do for older people affected by cancer, I can see the different levels of support that is available and realise that it’s not an equal playing field and what a struggle it can be.

If you will allow me to jump on my soap box, I will mention one more thing that my friend (and my mom) find highly irritating ……………… it’s not a fight, it’s not a battle, you won’t beat it, people who die as a result of cancer haven’t given up, they want to survive as much as the next person.  If only the media would stop using this language which insinuates that the person has given up.  Stop sensationalizing it, not everyone has the same chances, the same amount of time, the same levels of support and the same cancer.  That’s why COPA is a fantastic project and the volunteers who give up their time to help others deserve a massive THANK YOU.

My friend has started a blog about Inflammatory Breast Cancer and I would like to share it with you at some stage, when she is ready to make it public.  This is a very rare form of cancer which doesn’t have the same signs and symptoms of other breast cancers.  If you want to read more she has found some really useful information on these websites:

http://www.webmd.boots.com/breast-cancer/guide/inflammatory-breast-cancer

http://www.ibcresearch.org/

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