Living with the Consequences of Cancer

Guest blog by Ceinwen Giles, Trustee, Shine Cancer Support and 2013 Clore Social Fellow.

In a report released last week, Cured – But At What Cost?, Macmillan Cancer Support highlights that at 25% of those diagnosed with cancer at some point – around 500,000 people in the UK – are facing disability or poor health after treatment for cancer.  The report argues that commissioners and providers must better understand the long-term needs of people living with and beyond cancer and how these can be met.  Some consequences of cancer and its treatment, they note, can be reduced with simple interventions, while more complex issues will require specialist services.

Macmillan makes a number of compelling arguments in its report.  But what is missing from the report is a consideration of the needs younger adults who are in work or caring for their families. There are many services available at a free or low cost to people living with cancer, including counselling, physiotherapy, and assistance claiming benefits.  However, the vast majority of these services are offered during working hours.  For some people – those who are older and/or retired – this is unlikely to be an issue.  But for the 30,000 people aged 25 to 49 who are diagnosed with cancer in the UK each year, the current structure of support services often makes them unsuitable or inaccessible.

As a Trustee of Shine Cancer Support, an organisation exclusively focused on supporting people in their 20s, 30s and 40s who have experienced a cancer diagnosis, I frequently meet younger adults who struggle to find support that meets their needs, lifestyle and life stage.  For example, many younger adults affected by cancer know that they would benefit from counselling following what can be a very traumatic experience.  But, having taken months or even years out of work for treatment, they are often feel unable to take more time out of the office for something that is not seen as a necessity.  This can sometimes lead to bigger problems down the road as anxiety or depression then make it even more difficult to work.

The nature of the assistance provided to those with poor health post-cancer is also deeply personal to me.  Three and a half years ago I was diagnosed with an aggressive form of non-Hodgkin lymphoma.  Treatment involved a high-dose chemotherapy regimen which was given to me over the course of five months in the hospital.  In many ways, I emerged from my treatment feeling lucky. The almost laughably long-list of possible side-effects (including brain infection, liver and kidney failure, permanent nerve damage, and death) had largely failed to materialise.  What I found out months later though was that the same chemotherapy which has hopefully left me cancer-free has also damaged my bone marrow and weakened my immune system.  Following an extremely nasty bout of meningitis, I was prescribed monthly immunoglobulin (a blood product) infusions to boost my system and ensure that I am able to fight off most common infections.

These infusions take up to six hours during a weekday and often make me feel tired and nauseous for 24 hours afterwards, making working the next day difficult.  Together with the vast number of other medical appointments and tests that I have to attend, it is frequently a juggling act of circus-like proportions to make sure that I can get my work done, see my doctors, and care for my three year old daughter.  I’m lucky that I have a helpful and supportive partner.  But the fact that I see other patients in the immunology clinic more frequently than some of my friends is symptomatic of the struggles I have fitting my medical appointments into the rest of my life.  Accessing other support on top of this – particularly when it is only available Monday to Friday, 9am and 5pm – is often impossible, no matter how badly it may be needed.

As the number of young people surviving cancer increases, so too will the number of those who experience difficult and debilitating consequences.  In seeking to support these individuals, we cannot assume that a “one size fits all” approach to the provision of support services works.  People living with and beyond cancer are a diverse bunch, with diverse needs.  A more flexible system of support that enables and empowers people to live well after diagnosis should be delivered in a way that makes them accessible to everyone.