Shine is working to create a community for young adults with cancer in the UK and with 11 networks across England and Wales, we are getting there! But what about the people who support young adults with cancer? The family, friends and partners who support us, worry about us and take care of us?
As Shine has grown, we’ve met more and more partners, friends and family and learned about the struggles and worries that they face when helping us to cope with cancer. And so (drumroll please!!!) we are excited to announce the creation of Shine Plus One!
Shine Plus One has a closed Facebook group where anyone who is supporting an adult in their 20s, 30s or 40s with cancer can go to chat, complain, offload or lend support – as it’s a closed group, no one will see what you write and your comments won’t appear publicly on your timeline. We’ve also started a London Plus One network that will be meeting up regularly.
In this weeks’s blog, Salma and Peter (both of whom have partners who are living with cancer) share their stories and explain how Shine Plus Ones came about. Take a read, join the online group and, if you can, come out for a drink! To get in touch with our London Plus One, you can email Salma and Peter at email@example.com.
Let me be frank: being the partner of someone with cancer is tough – but in my experience it’s never quite as simple as that. Clare and I had a pretty tempestuous relationship in the years leading up to her diagnosis. Although the “Big C” certainly stopped us both in our tracks, we had existing problems with our relationship that had been left unresolved. In our case, the issues revolved around a lack of effective and loving communication, as well as all the common stuff that being a first time parent brings up – the new family dynamic and the differences in the ways we wanted to bring up our toddler. Just because Clare suddenly had cancer, the existing tensions didn’t go away – the biggest issue on our plates had just dwarfed them.
Equally as suddenly, we were forced into roles that were completely foreign to us. My beautiful, sexy, strong-willed and outspoken wife suddenly became ill. I was a jobbing actor, only just beginning to realise after the birth of my son that I wasn’t the most important thing in my life anymore. Everyone suddenly expected me to take on the role of ‘carer’. I was supposed to be supportive in every way and humble to the core. I rebelled for a long while, as I simply didn’t want to accept what was happening to both of us.
I remember coming out with stock phrases that I could say while remaining completely emotionally disconnected: “Yeah its not easy, but compared to what Clare must be going through, I’ve got it easy” or “No one expects to be hit by the brick wall of mortality at 31 – I just can’t imagine how she must feel”. The fact was though that I didn’t really know what to say to people who asked how things were going. It was too huge to actually deal with. When people asked how she was, how I was, I often just wished they hadn’t bothered, as there was nothing that anyone could say that would make the situation better. My biggest challenge at the time was accepting our circumstances. Quite simply, we were both trying to come to terms with a very unpredictable future that neither of us had ever imagined.
The idea of being able to connect with other people seemed impossible as there was no one who really knew what we were going through. There were plenty of people who said “call me if there’s anything I can do” but we both knew there was really nothing they could do. Perhaps I didn’t really want to connect with anyone at the time. Usually very outgoing and social, I found that my default coping mechanism was to internalise and disconnect from others. I found myself crying down the phone to a Macmillan volunteer one time, but that was about it. There’s never really been anyone I knew of who was our age and who had gone through what we were going through – until now and thanks to the creation of Shine Plus One’.
2009 was supposed to be great. After years of struggling in vain we were finally pregnant with our first child. Life was wonderful. Then one phone call brought us down from the top of the world and my husband Rich was told he had hairy cell leukaemia. I imagine everyone remembers the moment they find out. We certainly will never forget: it was the day before our baby’s 20 week scan.
The scan is still a bit of a haze for me. We were very happy to see that our child was healthy and growing well but as we sat there Rich feared that he would never see his daughter born, and I was utterly terrified at the thought of being a single parent without my husband at my side. It was all hideously wrong.
Following his diagnosis Rich had to stay away from people to reduce his risk of infection – even catching even a cold could have killed him. Fortunately he could work from home, but with me about to go on maternity leave, it was a scary time not knowing if we would manage financially. It was a lonely time for both of us as well. The winter of 2009 /10 was a harsh one and most of the people we knew had a virus at some point so they couldn’t visit. As a hormonal, emotional pregnant woman my mind went to horrible places as I watched my husband get thinner and sicker, but if I wasn’t positive and strong who would be? I kept it all in.
After his chemo Rich caught an infection and was put into an isolation room in hospital. He was there for most of the final two months of my pregnancy and this was a dark time. I watched him shrink physically and saw how the isolation drained every ounce of enthusiasm from him. Each day I walked in the snow to the hospital and sat with him. I left each night when he fell asleep.
As the one without cancer it was almost impossible to shout “what about me?” but I found myself in a lonely place. I have many wonderful friends and family nearby who looked out for me and who phoned regularly, but people have their own lives, and none of them truly understood what it was like to be me.
Shine Plus One
Shine has been invaluable to our partners Richard and Clare and has provided support and an understanding community (you can read Richard’s story here). When we met at Shine London’s Summer Picnic in July of this year, we bonded over the idea of starting a “Plus One” group that could provide the same sort of support but for partners, friends or family.
We want to offer a friendly ear and support to those out there who, like us, feel they might benefit from chatting about the real issues that having a partner or family member/close friend with cancer brings up. We want to provide a platform for people to sound off about anything without feeling judged. We want you to know that you are not alone in thinking or feeling the way that you do!
You can get in touch with us on Facebook (just request to join the group) or, if you’re in London, drop us a line at firstname.lastname@example.org