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This is where you can find out about all the amazing things going on in the Online Community. It's where you'll find news about events and awareness months; ways to get involved with Macmillan and up-to-date campaigning news from Macmillan HQ.
To celebrate Volunteers Week, 1st-7th June 2015, our Macmillan Community Champion Daloni has written a blog about how volunteering for Macmillan is her way of giving something back to the womb cancer community.
Diagnosed with womb cancer in Feb 2014, Daloni is a mother of two, wife and journalist. She has been volunteering for Macmillan for over 5 months, and a member of the Online Community for a year.
This cry for help came across the internet one evening in April.
"I just need advice on trying to stop myself reading something into everything before I go mad!"
It reached me via my email inbox on my mobile and came from a woman newly diagnosed with womb cancer. She was scared, struggling to understand not just her diagnosis but also the care process. She’d convinced herself that an off the cuff remark from a radiographer had sinister connotations.
So the womb cancer support community immediately swung into action. We shared our experiences and knowledge; we reassured and made suggestions about things that had helped us and that she might try.
Slowly, she began to unburden her fears and what was going on in her head. Twenty seven hours later she posted this:
"What a relief it has been to find so many caring people on this site. Yesterday I felt so alone and now I know that I can log on at anytime and find help."
I’m a Macmillan Community Champion and this is what I’m here for. There’s no one who understands the impact of a cancer diagnosis like someone who’s been there. There is no-one who can offer support and practical ideas about how to get through it like someone who’s done it.
I’m saying that from experience. A few days after I was diagnosed with cancer of the womb 15 months ago, I went to see the marvellous hi tech movie, Gravity. I watched Sandra Bullock playing astronaut Dr Ryan Stone, stranded in space after an accident. There she was, spinning like a Catherine Wheel, with no idea which way was up and which was down, frantically reaching for a firm hold. Every time she seemed to have found safety, everything would blow up in her face sending her spinning off again.
It was just how I felt.
The Macmillan Womb Cancer Support group became my place of safety – one that didn’t blow up in my face but has remained solid and firm. I can’t remember exactly when in my cancer journey I came across it. I knew that Macmillan provided information about cancer and indeed it was the one source that my clinical nurse specialist advised I look at. “Don’t go on the internet,” she had warned me early on. “You’ll only scare yourself. But if you must, go to Macmillan.”
So, it was on one of my forays into the internet to find out how to prepare for surgery or what to expect from chemotherapy that I came across Macmillan Community.
Here I found an online community of women who knew exactly what I was going through. Some of them were ahead of me, others some at the same stage. Here was a group of women who would share their experiences and with whom I could share anything.
It was on the main site that I found the terrifying lists of side effects from chemotherapy; it was on the online community that I discovered how many women have a pattern of side effects and can plan for good and bad days so that chemo doesn’t entirely rule their lives.
They were ready to give me a virtual hug when I sent out an electronic howl of despair. They gave me an electronic cheer when I completed a phase of my treatment. Soon, I started to support other women who were sharing their fears, triumphs and worries.
Macmillan’s community has seen me through cancer treatment and helped me both to understand and to articulate some important ideas. Early on, one woman advised me to look on the journey as an adventure. It was a hard notion to get to grips with but one that has been enormously helpful in trying to regain some autonomy.
I was able to articulate how I coped: I handed over my medical care to the medics but saw my role as keeping myself as well as possible through exercise, healthy eating and meditation. We exchanged tips on keeping busy through the hours of sitting on the sofa. I knitted; others crocheted. We have had conversations not possible elsewhere about our sex lives and our partners.
I’m now a community champion, a role that I enjoy enormously. I’ve done the training – which was both easy and incredibly useful. I know how out of control newly diagnosed women feel – and it is great to be there to help and support them in the same way I was helped and supported. It is also good for me to turn this experience into something useful that can help others.
I’ve since discovered that being part of the community makes me a Clanger. No, don’t laugh – this is serious and evidence based.
In 2008, the government’s Foresight project reviewed the evidence for what keep us mentally well, and came up with the acronym CLANG:
Connect with others and gain the emotional ballast of being part of a community.
Learn and feed your curiosity.
Be active every day in mind and body.
Notice the world around you and discover the joy of being as well as doing.
Give back to others.
I’d say being part of a Macmillan community definitely counts as clanging.
But are such forums unequivocally A Good Thing?
I know that there are lots of stories out there of damaging online communities where one group of people gang up on an individual or where a particular view of treatment gains orthodoxy and no dissent is brooked.
I’ve never experienced anything like that in the womb cancer community. Here we share our experiences and let each woman take what she wants from them. We sometimes encourage women to seek help – suggesting that they might call their GP if an appointment hasn’t come through or that they call the helpline if they are struggling with emotions. We support each other to come to the treatment decisions that are right for each individual and do not judge. I have made a number of wonderful friends – most of them online but one I have met up with in person. We have a lot in common.
So for me, this is a safe community. I think that’s because of the safety nets built in by Macmillan with clear guidelines, moderators always alert and ready to react if they are breached and training for the community champs.
In the film Gravity, Dr Ryan Stone does get back to earth and the final scenes of the movie show her viewing the world through new eyes. That’s where I am now. My feet are back on terra firma, nothing will ever be the same again. When I meet someone newly diagnosed, I listen to them carefully and with my full attention. If they ask what helped me, I tell them it was the Macmillan community.
Get Involved with Macmillan today.
Read more on our Community News Blog.
Join our Online Community to talk to other people affected by cancer.
well done Daloni. Great blog for a great charity!
As usual well written and so true. Great wrote up and certainly reflects my own feelings about macmillan. Thanks Daloni. Susie x
Well done Daloni, always good to read your blog and to hear good things about our group!! You are right, it's a great support. Xx
Couldn't put it better myself! Well done!
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