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). 

getting hit by a bus

10 things you shouldn’t say to someone with cancer

Okay, we get it. Sometimes, talking to your friend or relative with cancer feels awkward. What do you say? What if you say the wrong thing? How can you help?

Recently, a discussion in our private Facebook group took off – “What’s the silliest thing someone has ever said to you about cancer?” asked David, one of our members. More than 110 comments later, we felt like we had to share some of them with the world! Take a read and let us know what you think. If you’ve got cancer, we hope you’ve managed to avoid these comments (all of these are real, by the way – we haven’t made them up!).  If you’re supporting someone with cancer, we know you want to help. Stuck for words? Sometimes admitting, “I don’t know what to say” can be the best way forward.

1. “You don’t look like you have cancer”.

In the movies or on TV, the person with chemo usually spends their days losing their hair and looking increasingly ill. But these days, a lot of cancer drugs don’t make you lose

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All of these people have, or have had cancer.

your hair, and many people don’t have chemotherapy anyway. Some people end up on “watch and wait” without treatment right away, while surgery and radiotherapy are frequently given for more localised cancers (or even advanced cancer if they can halt the spread). The key message here? A lot of people don’t “look” like they have cancer but just because you can’t see the side effects of the cancer or treatment doesn’t mean they aren’t there. A simple “How are you feeling?” can be a much better, and more sensitive way to start a conversation.

2. “So, how long have you got?” or “I’ll help you with your bucket list.”

We all know that cancer can cause death. But if, when, and how that might happen isn’t usually something that we want to talk about. When you’re asking your friend or relative about their illness, ask yourself whether your questions are more for your own information (read: nosiness) or to help them.Bucket List

Most people with cancer aren’t given a “timeline”, and even if they are, they might not want to share it. If your friend is openly creating a bucket list, great, but generally speaking it’s good to keep the death talk to a minimum. Journalist Helen Fawkes created a “List for Living” after she was diagnosed; this can be a much more positive way to think about treating someone with cancer to a nice experience than a “bucket list”.

3. “You don’t need chemo…..I know someone who cured their cancer with [insert questionable cure here]” or “Chemo doesn’t work – it’s just a plot by Big Pharma to make money” or “Have you tried turmeric?”

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This will not cure your cancer.

So, your friend is prepping to start chemo and this seems like a good time to tell them about an article you read about someone who shunned chemo and cured their Very Deadly Cancer with kale and wheatgrass, right? Wrong.

Chemo can be tough but it saves lives, and whether you agree with your friend’s treatment decisions doesn’t matter. Eating more fruits and vegetables, and getting more exercise is certainly good for us and there is some evidence that it can help reduce rates of relapse in certain cancer types. But if the person you’re supporting is undergoing chemotherapy, consider carefully whether it’s definitely the right time to bring up that raw food diet that your aunt’s sister’s best friend used to cure her dog’s leukaemia. It’s probably not.  Instead, why not make them a nice meal and take it over to their house? (Only include kale if you know they like it!).

4. “That’s a good kind of cancer” or “At least you’ve lost weight. There’s a silver lining in everything, right?”

When you’re diagnosed with a life-threatening disease it’s pretty hard to find any silver linings. Self-esteem can take a massive hit, so try to avoid making comments about someone’s appearance or weight or downplaying the seriousness of what they’re facing. Anyone diagnosed with cancer is likely to feel pretty shocked by the diagnosis. Sure, some cancer types are more curable than others, but as most oncologists will tell you, every case is different. Telling someone they’ve got a “good cancer” risks minimising their feelings. A better approach might be to say something like “I’m so sorry about your diagnosis. Do you want to talk?”

5. “Cancer is caused by past trauma and stress”

There is little good quality evidence that stress and cancer are linked and if your friend has cancer, they’re probably stressed because, you know, they’ve got cancer. Ask yourself what you can do to relieve their stress. Can you take them out for a film or a drink? Cook them dinner? Walk their dog? It doesn’t need to be a big thing – even small gestures can mean a lot. Take a look at our blog about how you can help.

6. “I’ve heard that’s a really bad way to die” or “I know someone who died of that.”

As with point 2 above, avoiding death talk is generally the way to go. Talking about how bad/painful/awful death might be is a big no no. And telling your friend or relative with cancer that you know someone who died of the exact same thing is also to be avoided. Know someone who has lived 20 years after a diagnosis? Feel free to mention them! Those are the stories we like.

7. “Managing someone with cancer will look good on my CV” or “What about me?”

If someone you know has cancer, it’s time to think about all the great ways that you can support them. A cancer diagnosis is about the person who has cancer and those immediately surrounding them (partners, parents, children). This can feel odd if you’re used to getting support from your friend or relative but think of it as a good opportunity to repay all the love and support that you’ve received in the past. Unsure who to turn to for support? Take a look at this handy “ring theory” guide and remember: support in, dump out!

Ring Theory

8. “If you need anything, just let me know.”

We know it might sound odd, but often, we don’t know what we need, and even if we do, it can feel scary to ask. Rather than making your offer general, try to make it a bit more specific. Ask if you can make dinner on a Tuesday, drive your friend to their next appointment, or do their grocery shopping next week. By making it specific, you’re taking away the burden of coming up with something – and that is helpful.

9.“Everyone dies” or “Any one of us could get hit by a bus tomorrow”.

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“I might get hit by a bus tomorrow”.

You’re right – everyone does die. But the difference with cancer, especially cancer at a young age, is that death goes from being a vague hypothetical, to something that is giving you a cold hard slap in the face. That bus everyone’s talking about? Your friend has already been hit by it. They’re just waiting to see whether they’ll survive, and they’re likely really scared. It’s great to ask someone if they want to talk but sometimes distraction can be the greatest gift. Seen a funny cat video online? Now may be the time to send it over (assuming you’ve already checked on how they’re feeling).

10. “So, you’re all better now, right?”

One of the things that few people talk about is the long-term effects of cancer. The media shows us people who have survived cancer and go on to run a marathon or write a best seller. What you don’t get to see is that those same people are often also left scarred, depressed and tired after months or years of intensive treatment. For many people with cancer, the end of treatment is a tough time. They’re no longer seeing their doctors and nurses as regularly and, on the surface, life appears to be returning to normal. They may be in remission or be looking forward to a long treatment break but they’re unlikely to be “all better now” or for a long time to come.

We know it can be tough to keep up the same level of support once treatment has finished but keep in mind that your friend or relative may be feeling especially lonely. Make sure to keep checking in and, if you can, make sure they still get the odd treat. Be ready to chat if they want to talk about how they’re feeling and remember that you don’t have to solve all their problems. Just being a good listener can be all that’s needed.


If you’re in your 20s, 30s or 40s, why not join us online? We’ve got a private Facebook group here, or you can follow us on Twitter or Instagram

Life – but not as you knew it: The Perils of Living Life in Overdrive

Most young adults living with cancer have been told at one time or another that we ‘should live every day like it’s our last’ (if there’s one thing cancer is good for, apparently it’s a cliche!).  But what happens when you go all out and try to make up for ‘lost time’? Is it possible to live life at 100 miles an hour and still function?

Is our latest blog, Victoria describes her experiences of living her life in fast forward – what she did, why she did it, and the unexpected pressure that came with creating a ‘list for living’.  Take a read. It’s a great reminder of the need to balance fun and a little bit of rest!


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Guest blogger: Victoria Bel Gil (pictured with two members of X-factor finalists Rough Copy)

The emotional aftermath of my recovery from cancer has felt like having an unexploded bomb in my back garden. Even though I know that it’s gone for now, I still dread the day that it may become active again. I worry that, after years of lying there quietly and undisturbed, it will begin ticking and become an immediate danger to me once again.

While this feeling does not follow me around everyday, it catches up with me when I am faced with having to make future plans and decisions around my life. Simple and enjoyable tasks such as signing up to a new mobile contract, buying new furniture for my recently (pre-diagnosis) purchased home, or enrolling on a year long college course began to give me anxiety. I have felt – and still do feel – uneasiness around making future plans.

Once I finished treatment, many well-meaning friends and family members wanted me to catch up on what I had “missed out on” and to live my life “for today”. Invitations flooded in – and I took them all!

In the first six months after treatment I visited Brownsea Island twice, changed jobs, enrolled on an evening course in floristry, went to London Fashion Week, got a boyfriend (and ended it), saw an X Factor finalists’ show, visited gardens in Holland and Hampton Court, rocked out at two festivals, travelled to visit friends in Devon, Bath, Cardiff and London, and spent Christmas in the New Forest – and the list went on. Days out? Yep count me in! Night out on the town? Yes please! I even created a ‘list for living’ full of all those exciting things that I’d always wanted to do but had never got around to. Having looked cancer in the eye and showed it the door, the list became vitally important to me. I felt as if I had to fill every minute of my existence and not waste any time.

So what’s wrong with getting that tattoo you’ve always wanted (yes I got one!), doing that charity sky dive (not yet but I’ll be doing it for Shine when I do!), or booking a holiday to India (I’m saving up)? Nothing I hear you cry. Do it!

While ‘doing it’ is great advice, I had not counted on how exhausting it would be. I also discovered that the flip side of a life in overdrive can be unbearable disappointment. I had loads of amazing days out and fun times, but I often ended up feeling exhausted and unfulfilled. Take one of my living list items: run a half-marathon. At the time of my breast cancer diagnosis I was 38 and recovering from a recent divorce. Running had been a coping mechanism for the end of my marriage and, before my diagnosis, I had signed up to run a half-marathon for children’s cancer charity. I had completed many 5 km and 10 km races and was well on my way to achieving my goal.

And then: bam! In March 2013, I was diagnosed with aggressive breast cancer in my right breast and was given six rounds of chemotherapy, a right mastectomy, and 25 blasts of radiotherapy followed by 17 Herceptin injections over 15 months.

Throughout my treatment, much of my half-marathon training went on hold, though I am proud to say that I continued to run (slowly) throughout chemo, much to the terror of my parents. I even did an off-road 5km in the pouring rain between rounds 5 and 6 of chemo! Once I had my mastectomy, however, even my stubbornness couldn’t ignore the infections I kept getting in my surgery site as a result of pushing myself too far. When I realised I needed to stop, I felt a huge sense of loss and disappointment. My confidence in running had gone and, unbeknown to me, my little living list had put me under enormous pressure.

Eight months post-treatment, I have only just started running again with my little group of running friends, and my confidence is slowly returning. Instead of feeling bad about not completing the half-marathon, I have realised that I needed to start “listening to my body” and be more realistic and gentle with myself. To help me do this, I’ve devised some strategies:

1) Set realistic goals and plans: I have re-written my list for living to be more realistic and flexible to my new needs. Running a marathon may not be possible but running weekly with my group certainly is. Following an 8-week return to fitness programme that I was referred to by my GP, my fitness has improved. Last week I went on an evening run and kept up with my friends for nearly 5km!

2) Be kind to myself: I have allowed myself to take it easy and, rather than beating myself up, I focus on how far I have come in the nine months since treatment. If I don’t feel like running one day, I don’t feel bad – I just go to the next session and move on.

3) Celebrate the new goals and don’t underestimate new achievements: In my new post-treatment life, I run daily marathons. These include getting myself up, showered and dressed (impossible after my op without help), walking my dog twice a day, going to work part-time and doing my own house work (which somehow always seems so satisfying now!).

Is life dull? Not at all. I feel proud that I am taking back my independence. I still believe its great to plan and take small steps. But it’s also important to celebrate those steps and to remember that even though we are slow and hesitant we are still moving forward.

Oh and the bomb? Well, hopefully if it starts ticking again I will be better prepared. I look forward to meeting the hunky fire fighters who can help to blow it up!