Living with incurable cancer: Talking about the future when I won’t be here for it

In this post, Shine community member Christine reflects on discussing future plans while living with incurable bowel cancer.


I have incurable cancer. It seems to create a lot of awkwardness.

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Christine with her parents

 

But, life goes on. I know that when I die the world will go on without me. That’s the same for each of us, though hopefully for most people that time is a long way off.

In the grand scheme of things we are all just tiny specks who exist for such a tiny length of time. Most of us will have only a very limited impact on the wider world. If we are lucky we will have some small influence on our little circles. But really, for the vast majority, the future will be no different without me in it.

I have accepted my fate, as best I can. What I find difficult is that other people make all sorts of assumptions about how I might feel, and it ends up limiting conversation.

Sometimes when a group discussion naturally gets on to future plans, people start to look at me uncomfortably. They might even try to change the subject. It is really not necessary. I don’t mind at all.

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A photo from Christine’s recent holiday

I am not worrying about pensions, or mortgages, or planning a wedding. It doesn’t mean I don’t understand the importance of those things to other people, and I don’t mind discussing them, though obviously I might not have much to contribute. (Except on weddings – I have a lot of strong opinions there!)

Of course I am sad that I won’t have the future I thought I might. And I am sad for all the things I will miss. But that sadness is far outweighed by the joy of knowing that those things will happen. My loved ones will carry on living without me. They will be happy again. I am not suggesting it will be easy – far from it.

I don’t believe in a heaven, or that I will be watching over them. When I am gone, that’s it. Whatever made me me will cease to exist, and my body will return to the earth. I will live on in the memories of those who knew me, and I hope that they will continue to feel my love even when I am no longer here. Somehow I will always be a part of their lives.

Sometimes I forget that my days are numbered, and I have little daydreams about my future, the same as anyone else. To be honest even without the whole incurable cancer thing I doubt many of them would come to fruition. Few of us live the life we planned, which is often no bad thing.

I don’t mind talking about the future, either generally or people’s individual hopes and dreams. I don’t begrudge anyone their good health or their future. I don’t wish that everyone else was dying too, just to keep me company. So please don’t leave me out of your conversations or feel that you can’t tell me things.

I still want to be a part of your life while I can. And if that means planning for your future then I am more than happy to join in.

Anyone who knows me well will know that I am quite organised. I like my lists and plans. I’ve had to let go of a lot of that because cancer is so unpredictable. But now I have a whole new set of plans to make – for my funeral, my end of life care, my will. It could be a bit depressing, but actually I get quite a lot of comfort from it.

What I am trying to let go of is my desire to continue to control the future when I am no longer here. I worry about how my family will cope. At first I came up with all sorts of ideas of how I could guide them through. But the reality is that I just can’t. I have to accept that once I am gone, they will need to learn to live in their own way. I don’t get to be involved in that. If they decide to abandon the monthly smoke alarm tests and the house subsequently burns down then it will not be my responsibility.

I thought about leaving cards for all the milestones I will miss. But I don’t even know what those milestones will be. And when would I stop? It seems a bit selfish, to inflict myself on them even when I am dead. I don’t want to gatecrash, or to make them sad on what should be happy occasions. And really it’s only to satisfy my own ego. I am dispensable. Everyone will be just fine without me.

Life isn’t just about the big milestones anyway. It’s in the boring minutiae of the everyday. When I imagine the future I would have liked, it’s those little moments that I will miss. Not when we are all dressed up to go somewhere fancy or putting on our biggest smiles for a photo, but laughing because otherwise you’d cry, or finding something to smile about when you’ve had a really hard day. And actually I think, much as I’d love to be there to celebrate all the wonderful things that are to come, it’s the hard times that I am sadder about. It pains me to imagine my loved ones struggling and not being there to help them.

Of course, there’s not really anything I can do about it. I try to give everyone as much love as I can right now while I am still here, and that will have to be enough.

If you’d like to connect with other young adults living with cancer, please request to join our private Facebook group or follow us on Twitter (@shinecancersupp) or Instagram (@shinecancersupport). 

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Improving treatment and support for young adults with cancer in the UK and Europe

What a full on weekend!!

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Jon, Shine’s Fundraising & Comms Officer represented Shine at YCE’s Annual Meeting together with Rachel, one of our fabulous Network Leaders!

Together with Rachel, Shine’s North East network leader, I’ve recently returned from Youth Cancer Europe’s Annual Meeting in Vilnius, Lithuania!! We were so grateful to have met everyone and to have been a part of all of the important discussions that were held.

To be honest, I was very nervous beforehand about going…with my dodgy eyesight I’m not the most confident traveller and I wondered how my anxiety and fatigue would hold out. I find meeting others who’ve been affected by cancer to be really helpful, but big events can drain my steroid induced energy (Shine Camp and the Great Escape were amazing but I regularly had to pull back as my symptoms hit home). My friends are used to me having to take timeout but at the meeting I hoped I’d be able to contribute as much as possible, represent Shine, and bring back the expertise that was shared.

YCE’s website outlines their aims:

“Together we can help shape European policy, collaborate in and promote research, fight for better access to care, for better treatments, better conditions and help fix disparities that exist across Europe for young people fighting cancer.”

And they have a great tag line too: “Giving patients and survivors a voice in Europe”.

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Inspiring speakers at YCE’s meeting

At first, I wasn’t sure what issues young cancer patients in Europe face, or what disparities there are between countries, but the weekend proved a crash course in information, and greatly improved my understanding of the importance of policymaking too.

After cancer in my early 20s and through my work at Shine I’ve become well aware of the need for care to be tailored more to the lifestyle of young adults. I had some idea how government and industry policy influenced care, but at the meeting I was shocked to hear some of the issues that people faced getting access to any care, let alone care tailored to their age! It was inspiring to hear from the organisations working to support younger patients in countries that are still developing systems to reflect young people’s needs.

Many people at YCE were first diagnosed as children or teenagers and many of them are still suffering the impact as young adults. The kind of issues that we explored together are issues I only started going through in my late 20s – but that I’m still struggling with 10 years later. Things like anxiety and living with uncertainty, living with the after-affects of treatment, dating when most of my friends are already well into stable partnerships, the thought of children when everyone around me already has them, and trying to get a stable career when friends have been in theirs for years! Being at the meeting really made me see how the cancer care pathway has to support people as they leave childhood/teenage years, as well as people first diagnosed early in adulthood! As the demands of life change the impact of cancer changes too.

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Chatting through issues about working after cancer in a breakout session

The disparities between countries in terms of access to care became very clear over the course of the weekend, as did some of the practices that were working most effectively. Being at the meeting also made me realise how fortunate we are in the UK to have the NHS. Of course, many of us, including myself, have experienced problems with how NHS services work for younger people and know that there’s room for improvement in terms of specific types of care and in coping with the after effects of cancer. But at the meeting I heard examples of countries where cancer patients have to raise funds for each scan, as well as any treatment that may follow. Processes of diagnosis and referral are often not as efficient as they could be and patients often need to research treatments themselves. While there may be times when we have to research our conditions, fight for them to be tested or argue to access to certain treatments, for the most part we do trust our NHS professionals to make decisions in our best interest.

It doesn’t matter how or when we got here as young adults who are living with cancer, all of us need support to help us live as normal lives as possible. People who haven’t felt their bodies failing them due to cancer may find this difficult to understand. Everyone faces tough things growing up, but a serious illness adds another dimension. It makes it more difficult to live that “normal” life that all your friends appear to be living.

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Prioritisation session for the weekend

One thing the weekend helped me to realise is that change doesn’t need to be either local or national but that together (there were 23 countries represented at the meeting), we can create bigger and more meaningful movement for all. In order for the needs of young adults to be met, we need to improve how we communicate about them to decision-makers. We also need a solid understanding of the policies in our own countries that shape access to treatment and funding for research and new therapies.

As someone who’s had a survivable cancer, I feel a sense of responsibility to increase

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It wasn’t all work! Rachel takes in the view with a glass of wine!

awareness of what I have experienced so that others going through it in the future can have care that reflects their stage in life. Working together with YCE will allow Shine and the other participants to better examine and share practices, support others, and build a voice so that we can have a say about decisions made for us. Cancer patients have power and, if we are knowledgeable enough about how health systems work, we can speak on behalf of the 210,000 young adults currently living with and beyond cancer in the UK, to influence those decisions.

Jonathan is Shine’s Fundraising and Communications Officer. Why not sign up to this blog (see the button at the top!) or follow us on Instagram @shinecancersupport