Cancer occurrence is growing every day. In Ireland, every three minutes someone will receive a cancer diagnosis, every hour someone will die from cancer. It is predicted that by 2020 half of the population will receive a cancer diagnosis at least once in their lifetime.
Getting cancer as a young adult poses a number of specific issues. In February 2015, the Irish Cancer Society sought a new voice to advocate for young adults living with cancer in Ireland. They put a call out for young adults who had experienced a cancer diagnosis to come together and discuss the services and supports that were missing when they were dealing with cancer. Twenty young survivors came together to discuss what they had been through and decided something must be done. From that day YouCan Ireland was born.
Peer Support and Membership Co-ordinator and founding member of YouCan Ireland, Lyndsey Connolly was present on that day to listen to young survivors from all over the country talk about their experiences. Speaking to the Circular, Lyndsey explained the issues that came up made it impossible to walk away and do nothing ” We decided we can’t just walk away from this, we need to do something so people who experience what we went through don’t feel how we felt”.
The aim of YouCan Ireland is to provide age-appropriate supports and services nationwide. To educate the public and medical professionals on how to deal with young adult cancer patients and to advocate for the specialist services required.
The organisation is currently awaiting their official charity status but in the interim has been working since 2015 on an online support forum as well as organising meetups around the country for patients and survivors.
Through the work with young adult patients so far Lyndsey explains there are a number of specific issues faced by young adults with a cancer diagnosis. These range from financial issues, having to drop out of college to isolation, loneliness and infertility.
The online forum set up by a private group on Facebook allows patients to get advice and ask questions about different treatments and side effects. Lyndsey believes a forum is a powerful tool in allowing people to vent to those who understand what they are going through.
Lyndsey herself is a cancer survivor. In 2013, while in the process of completing her Masters, she was feeling tired and rundown. Naturally, she put this down to her workload and busy schedule as a full-time student who also had a full-time job. The tiredness got worse, and after getting the flu vaccine, she ended up in A&E with Meningitis. In A&E a chest X-ray was carried out that by chance discovered she had a large tumour in her chest. Following a biopsy, Lyndsey was diagnosed with stage two Hodgkin’s Lymphoma, she was 25.
Hodgkin’s Lymphoma is a blood cancer that starts in cells called lymphocytes which are a part of the body’s immune system. It typically affects two age groups, the first group between the age of 15-40.
Lyndsey underwent six months of ABVD chemotherapy. A harsh regime of chemotherapy every second week, she suffered many side effects, she recalls at one point thinking “I’d rather die because it was just so hard and I was getting so sick”.
One of Lyndsey’s biggest fears, when she was told that she would need chemotherapy, was hair loss ” being a girl you don’t want your hair to go which is really hard”. To keep control she decided to shave her head and donate her hair, although she bought a wig she couldn’t face wearing it and decided to go with the bald look.
Following the six months, she received the all clear. In the months after her treatment, Lyndsey was subsequently diagnosed with Post Traumatic Stress Disorder. Coming to terms with what had happened to her, the life-altering side effects and the abrupt loss of contact with hospital staff proved very difficult.
Infertility is a huge issue among young people who have received chemotherapy or radiation. Lyndsey’s doctor made sure she had her eggs frozen before any treatment began but her work with YouCan has opened her eyes up to “the disparities around the country in different hospitals with how different doctors go around it”.
“For me, that was the worst parts of treatment because you go into this room where there are couples who are ready to have a baby and you’re sitting there thinking I’m doing this and I don’t know if I’ll be alive to use these eggs”.
Not all doctors can offer this and not all patients have the time to wait. Going forward this is a priority for YouCan Ireland working to be able to provide correct information about fertility, links to fertility services and counselling if someone does find themselves infertile as a result of their treatment.
Lyndsey has a number of other lasting effects in addition to infertility following her treatment, these include severe nerve damage in her leg (peripheral nephropathy) and blood vessel damage in her fingers as well as the emotional scars.
YouCan Ireland aims to provide services where young adults can discuss their experiences ensuring they don’t feel alone. Lyndsey was treated in a room where she was the youngest person by decades and thinks it would have helped to have someone her age who understood how she felt going for fertility treatments, losing her hair and how hard it was watching her friends move on while she was stuck. One of the organisation’s primary aims is to also create services for people when they finish treatment.
“when you go through this, everything is kind of different and the support system isn’t there, you are this different person completely and you don’t know how to put yourself back out there”.
Lyndsey wishes to get the message out there that unfortunately, young people aren’t invincible. Cancer knows no bounds and can affect anyone at any age. People need to be proactive about their health and listen to their body.
For more information on YouCan Ireland, like them on Facebook at https://www.facebook.com/youcanireland/ or join their private Facebook page by searching YouCan Young Adult Cancer Support Network Ireland.