Retiring And Preparing To Die At 41

Yes this title is a strong one. But I am continually shocked at how many more younger people are being affected by cancer. I recently spoke to a young lady of 36 who has stage 4 bowel cancer. Maybe this is a thing because I am getting older, but I don’t think so? Personally I know so many people under the age of 40 that have died from cancer. Quite truly shocking for our society! Will this be yet another thing that gets generally accepted by those running our cancer care?

When I was diagnosed at 51 in 2007, I was told I was young to get Mantle Cell Lymphoma. Now I know many people at least 10 years younger who have it. Before Covid, all organisations involved in cancer were aware that it kills approximately 450 people per day, and that 50% of us will be directly affected by the disease. But these are still just talked about as statistics not related to people and their lives! I want to know why anyone in the sector considers these figures acceptable? Maybe if they were put on the TV every month by the Prime Minister we would get something done?

I would like to thank Clair (@DyingWell_UK ) for sharing her own experience of ‘coming out’ publicly, with her terminal diagnosis of stage 4 bowel cancer. Highlighting the important part work has, and is still playing in her life.

“My first job was in the stock room of Freeman Hardy and Willis (a now defunct shoe retailer). I was 13 and had trawled round collecting application forms from all the shops in our town after school, completely on my own initiative. My motivation at the time was to get some money together for a pair of cherry red Doctor Martens. I have worked ever since. A variety of shop jobs through school and college, then various factory temp jobs and call centres saw me through my university years. I joined the Civil Service graduate scheme and then set up my own training and consultancy business.

I was working overseas in November 2018 when I first got sick. Making my apologies to my client, I was taken to hospital with severe abdominal pain, where I underwent emergency surgery and then was flown home to recover. I had a few weeks off, and then when I was ‘better’ I went back to work. Except I wasn’t really better. The diagnosis was stage 4 bowel cancer and this was just the beginning of a journey of palliative treatment that has so far included 3 major surgeries and 4 rounds of chemotherapy.

I don’t really think I ever made a decision about whether I would keep working or not. There were commitments in my diary and I just didn’t want to let people down, so I kept going. Only a very few people knew that I had cancer, and most of them I think presumed that the treatment would make me better. Because I run my own company and have control over my own diary I have been very fortunate in being able to plan work around my treatment. I pioneered remote working way before COVID made it cool, and my oncology team joke about how I come to all the meetings with my diary!

There are definitely times when I’ve pushed myself too far; continuing to commute when I felt so sick and tired with chemo, or struggling with my luggage after surgery. Managing a stoma in a corporate environment was also tough – disabled toilets normally locked and inaccessible to people that didn’t fit their steroptype of people who should have access. While I’ve sometimes been surprised by the kindness of strangers, I’ve also sadly found that people are pretty unsympathetic if you look like you should be fit and well.

But mostly my work has been a lifeline. There’s been a liberty in being in company with people who don’t know I’m sick. I’ve loved having intelligent conversations, feeling valued and appreciated. Being able to contribute something of value to others has been so important. Financially it’s also made sense for me to keep working, and I think my family have found it reassuring to see me doing normal things. At a very basic level it’s been helpful having things in the diary and a reason to get out of bed and move forward. Knowing I have a terminal illness has changed the way I prioritise the work that I do; I’ve enjoyed seeing projects through to completion and investing time in developing others.

So it is with some sadness and trepidation that I admit that I’m retiring in 2021. As a long time associate of the What Works Centre for Wellbeing, I’ve begun a retirement project ‘Dying Well’ to explore Wellbeing in terminal illness. This world cancer day I will be supporting the Civil Service working through cancer network as they consider how best to support those living with terminal illness and encourage more Government Departments to sign up to the TUC ‘Dying to Work’ charter.

Being employed is a really key part of personal Wellbeing and it is often also the link to other things that really matter: our sense of purpose, financial security and personal relationships. We know that how we feel about our health is as important as how healthy we are; and so when our health forces us to make unwelcome decisions about work it can be really difficult to manage. I feel very lucky to have be able to continue to work as long as I wanted to. If you are looking for help in this area, I recommend the resources on the Marie Curie website. Clair Fisher www.dyingwell.uk dyingwell@gmail.com”

I feel very honoured that Clair has chosen to share this piece with me. If you would like to find out more about her diagnosis etc you can here. If you would like to share your own experiences please feel free to get in touch. Thank you so much as always for your support of my work and this site. We will continue to pressure for improved outcomes throughout the entire cancer sector!