Say what you need to say


My New Year’s resolution for 2014 was stolen from a friend. He frequently advises people to stop and then think about what they think they need to say, and test it against these three questions:

“Is it true?
Is it kind?
Does it need to be said?”

He asserts that only if something satisfies all three questions is it suitable for saying out loud or communicating in some way. I liked the idea of this… That it is satisfying to live life trying to be as kind as possible.

Of course, nobody is perfect and I’m sure there will be times when I open my big gob and put my foot in it… But I would like to try to live by this for 2014 and beyond.

That doesn’t stop me sometimes wanting to talk to people quite candidly about how I feel. Especially if I am worried.

There has been (in my perception, at least) a lot more coverage of breast cancer and BRCA gene mutations and so on in the news recently. This still directly affects me. It probably always will. It’s two years ago this week since my diagnosis, and seeing any article about cancer puts it at the front of my mind and makes me worry just a bit.

The reason it worries me? I have to make a decision at some point about getting rid of my Fallopian tubes and ovaries altogether… I’m BRCA2+ and therefore I have a 30+% chance of getting ovarian cancer, which is pretty high – and ovarian cancer is waaaaaaay less treatable than breast cancer.

The problem with knowing a thing could happen to you is that “could” isn’t “will”. It’s a numbers game… It’s a big gamble, but with years, rather than money..

Should I take time out of my life to have an operation? Should I mutilate my body so I might improve my odds and not be killed by my ovaries? If I do that, will I get heart disease and osteoporosis? Should I even be worrying about all this, and if I should, who can I talk to about it?

I have found some useful resources to read, such as:

Luckily these days, the information and science is available in much greater quality and quantity than ever before, and the internet grants us immediate access to a lot of it. That allows us to make much more informed decisions.

What it doesn’t do, however, is take all of the emotion out of the situation. That’s where seeking out a support mechanism comes in.

Of course, the “traditional” route of getting support involves talking the ears off friends or family, or conducting a symphony of snotty tissues in a nice counsellor’s office.

Seriously though… If you aren’t sure who to talk to and want something face-to-face, do give counselling a go at least once to see if it’s your thing. It can do you the world of good if you really go for it and talk openly.

If you appreciate that kind of support, there are plenty of people who are locally available – you only need to look in Google for a vast array of them. The best thing to do is to find someone with accreditations – and sites like bacp.co.uk/ are helpful for this. The counselling directory explains some of the accreditations. I’ve heard that CBT often has quite a good early result for people who like being set “homework” – things to work through in their own time between sessions.

Additionally there are support groups, of non-professional people who are willing to give up their time and talk in a relaxed informal environment to people in a similar situation. Groups like Keeping Abreast, and Macmillan can prove invaluable as a resource for this.

Something I know I’m not good at, is talking to people face-to-face about being frightened, or sad, or lonely… I feel uncomfortable with people seeing me get upset. If you’re anything like me, it’s good to know that there are now lots of new ways to communicate, be they indirectly through writing your own blog, recording videos, or talking online in forums, chat rooms, in social media and so on.

A few examples are:

See also: Accidental Amazon’s blog

Why does blogging help so many people through something like cancer?

I can only speak for myself but I have always found writing a pleasure. It allows me time to structure my thoughts and if necessary, re-order them. When I feel angry, writing it down allows me an outlet in a contained but more productive way than just being upset. I can take my frustration or sadness and put a name to it, and possibly even a song. It also allows me to then coach myself into a more positive frame of mind.

I follow a handful of bloggers who have had their own run-ins with breast cancer, all of whom are very interesting, insightful, challenging people. What they also are… Is lively, lovely and supportive on Social platforms such as Twitter.

I realise Twitter is a bit more public than some means of communication, but it is also more immediate. If you want a discussion, there’s usually someone posting on there about breast cancer, whatever time of day it is or wherever you are in the world, and you don’t need to sign up again or be vetted to talk to them. I’m also a member of some Facebook groups that share specific concerns about BRCA positive tests and associated medical procedures, or about reconstruction, and so on.

After chatting with some of the Twitter “regulars” one Sunday, we got talking about support groups and pondered whether it would be worth doing something more organised and regular in terms of discussions on Twitter. We knew there was a US one: #bcsm, but as that runs at 1am UK time I’ve only been involved in it once!

We realised that no one group has all the answers or indeed covers all time zones. That’s when we decided to get the hashtag #bccww registered. We have a Twitter account @bccww which is now a TweetChat every Tuesday night, 9pm UK time. We’re excited as we have LOADS of ideas for discussion topics. Come and say hi if you get the chance… Next Tuesday, 9-10pm UK time, 4-5pm EST.

My vision for the future is that we can share this or encourage other groups elsewhere in the world to do similar at times to suit them. As the Macmillan campaign says: “Nobody should face cancer alone.”

I talk to a real mixture of people in a variety of circumstances on Twitter. Some just diagnosed, others in the midst of treatments like chemo or radiotherapy, some like me who are picking up the pieces and trying to make sense of their options for next steps on more surgery, some with recurrences or metastatic cancer. That last group is unfortunately larger than you think.

All of us benefit hugely from the opportunity to talk to people who will say “yes I know what that’s like” or sympathise with us when we have a bad day, or cheer when we have a good one.

I’m not saying that I don’t have brilliant, caring friends and family, who I talk to about all kinds of things… But not everyone wants to talk about cancer or think about it day to day. I don’t want my closest relationships to be dominated by my personal “interests” in my health. I want to be able to say what I need to say in an environment full of people interested in and equipped to handle that kind of discussion.

It’s also helpful to talk to people who truly understand what we have been, or are, going through and can offer practical tips and emotional support. Sometimes it’s great to be able to talk about what you need to, in a forum that is away from everyday life.

All of the people that I have talked to, seem to naturally have a code of honour; they try to be inclusive and welcoming and above all, show kindness to others.

It’s a good way to live.

Take out all your wasted honour,
every little past frustration
Take out all your so called problems,
better put them in quotations
Walkin’ like a one-man army,
fightin’ with the shadows in your head
Livin’ up the same old moment,
knowin’ you’d be better off instead
If you could only say what you need to say…

Have no fear for givin’ in,
have no fear for givin’ over
You better know that in the end,
It’s better to say too much
Than never to say what you need to say, again…

Even if your hands are shakin’
and your faith is broken
Even as your eyes are closin’
do it with a heart wide open:
A wide heart.
Say what you need to say!

Lyrics by JOHN MAYER “Say what you need to say”

2 Comments

Filed under breast reconstruction, cancer, chemo, Friends, genetics and biomedical research, Health, mastectomy and reconstruction, mortality, relationships

2 responses to “Say what you need to say

  1. Joanna Levy

    Great blog!

    Joanna M Leviton

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