Tuesday, 19 April 2016

Approach with an open mind

Today I was lucky enough to attend an event where two of the speakers had previously been privy to my open brain.

The event was designed for people living with brain tumours predominantly and I received my invitation as I'm in the unenviable position of having cancer as well as a tumour. Although it sounds like heavy stuff it was actually an unexpected treat.

There were Consultant Neuro Surgeons, Clinical Nurse Specialists, Consultant Oncologists and even Neuro Psychologists all sharing their knowledge. There was a discussion panel, presentations and lots of support organisations offering everything from complementary therapy through to specially trained store staff from Boots The Chemist.

Here's what I retained from the event:

  1. There are specialists in conducting brain surgery (a craniotomy) when you are awake! Sounds scary but is apparently the best way to test your responses in certain situations where this is needed.
  2. Boots have a national network of Beauty Advisors to help people with life limiting diseases like Cancer to feel better about how they look and feel. Even with my chimp hair.
  3. Complementary therapies can be used to help tackle the physical and emotional aspects of brain tumours. This can be anything from reflexology to massage.
  4. Those with serious illnesses can have their eggs frozen to help them with loss of fertility further down the line (much further in fact as they can last up to 40 years)!
  5. Finally, and most importantly, there was an over-riding message from all the speakers and exhibitors that even people with life threatening diseases can access the right sort of help and live a life that is fulfilling, even trying something new so you're not judging yourself on your previous performances. 

Thanks to all who took part.

Well, not literally obviously...

Sunday, 10 April 2016

Guest blog from Amanda's friend, Charlotte

Two and a half years ago, I received a text from my best friend which shifted my world on its axis. The text said 'it's probably cancer. And it's probably spread.'  Since then I've struggled to make sense of Amanda's illness (futile, because it doesn't make 'sense') and I've struggled with how best to navigate our changing relationship.

When Amanda was first diagnosed I spent a lot of time online, hoping I would find some 'answers'. As common sense would have told me, reading factual information on cancer charity websites can be useful if you're someone who likes to know 'what you're dealing with'; trawling through obscure summaries of medical trials or out-of-date message boards until midnight, evening after evening, not so much.

I did search for, and find, tips on 'how to be a good friend to someone with cancer'. My visions of turning up on the doorstep with a fully prepared meal plan to nurse Amanda through chemo were perhaps a bit unrealistic, especially since I live more than a hundred miles away, but I did find practical, sensible advice on sites like this:


And this: 


One of the things I've found most resonant is the exhortation to 'be an equal opportunity listener...make it clear you're prepared to listen to the good and the bad'. I remember Amanda telling me she found it easier to talk about death with an acquaintance from church, rather than with family and close friends, as the prospect of her dying was just so painful to those who loved her most.

And the instinct to jolly things along, to reassure, to look for the best in the worst of situations, is a very strong one.  When I would first talk about Amanda to (unfailingly kind and sympathetic) colleagues and friends who didn't know her I'd be struck by the number of people who said things like 'well, as you say, at least they caught it early' - when I hadn't said anything of the sort; there are stock platitudes people use in conversations about illness, especially cancer, because it is just too difficult to have the real conversation.

Conversely, after Amanda received her terminal diagnosis, a few people told me they were worried about visiting Amanda in case they broke down completely.  On that point, I could reassure them - Amanda had already told me she didn't mind at all - in fact it showed her how much people cared about her.

It's not like that for me. In my quest to be strong, to 'be there' for Amanda, to be an exemplary friend, my coping mechanism has been to switch off my emotions to some extent; to remain resolutely dry-eyed and practical. I cry more at the Archers than I do about Amanda. I worry this is unnatural. I worry Amanda will think I don't actually care as much as everyone else (although now I think about it, I'm probably behaving much as she would, were our roles reversed).  I do care. I just can't quite take the whole thing in.

I didn't anticipate how the dynamic of our relationship would change. I'd always assumed that Amanda and I would remain friends well into our old age. But recently there have been moments when I've seen Amanda's illness take its toll, like when Amanda's asked me to count out change from her purse or when I've given her my arm to walk her across a car park, and I have had the disconcerting sensation that time has sped up for Amanda, and she has fast-forwarded many decades without me.

It also changes things to have our relationship mediated through Amanda's husband Dean, who is her social secretary extraordinaire, in addition to all the other ways he cares for, supports, and nurses her.  Dean arranges Amanda's diary, answers emails, types messages, etc, as these things have become difficult and time-consuming for her.  Amanda has always made such a point of being independent that her reliance on someone else, even when that someone is the husband she adores, is always slightly jolting. It's strange to be at one remove from her when for so much of our friendship, we've been a bit of a double act.

I used to get regular breezy voicemails from Amanda 'just calling for a catch up' as she drove around from one social engagement to another; I can still hear the very tone of voice she would use, but I don't get those messages any more.  I rarely used to answer my phone as I'd always have it on silent or charging somewhere, which I'm sure annoyed her no end; now I wish I had.

And yet, and yet. Amanda is still here, and every time I see her, I feel better, as despite all that cancer has thrown at her, she is still so recognisably herself. At the moment, the cliche that we should 'live every day at a time' seems like the truest advice of all.


Note from Dean : Apart from some sickness and challenging insomnia, Amanda is doing well.