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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Taking care: How and why ‘carers’ also need support

A few years ago, the partners of a couple of Shine members approached us about starting a ‘Plus Ones’ group. Having cancer is tough, they noted – but so is supporting someone with cancer. We started our Plus Ones group online and it’s continued to grow over the years. As we’ve worked more on supporting the supporters, we’ve also learned more about the issues that they can face.

In this blog, Dr. Jason Spendelow (one of Shine’s original Plus Ones) outlines some of the issues that ‘carers’ often face when supporting someone with a life-limiting illness. We know a lot of Plus Ones don’t consider themselves carers (78%, according to a recent survey that Shine carried out!) but we hope this gives you some insight into the support that someone looking after a young adult with cancer might need.


 

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Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers.

While carers do report many positive experiences, the physical and psychological wellbeing of this group is often compromised due to the stress associated with the support they provide. Those who provide significant levels of care to another person are more than twice as likely to suffer from poor health than non-carers (Carers UK, 2004). When asked directly, the vast majority (84%) of carers said that caring had a negative impact on their health (Carers UK 2013). Carer wellbeing, then, is a particularly important topic in cancer and other chronic illnesses. Carers provide a huge amount of support to loved ones affected by these illnesses. This means it is even more crucial that we take care of the carers.

Mental & Physical Health

We have an increasingly large pile of research available on carer wellbeing. From this, we know that psychological issues are among the most commonly reported difficulties amongst carers (Stenberg et al 2010). An important concept here is ‘carer burden’, which refers to negative emotional experiences that occur from providing care. The level of carer burden varies from person to person, with higher levels of burden being linked to female carers, living with the care receiver, spending large amounts of time caring, being socially isolated, under financial stress, and having no choice in becoming a carer (Adelman et al 2014).

Carers can experience a range of psychological difficulties. Some of the most common issues tend to be low mood and depressive symptoms, elevated levels of stress and anxiety, and lower quality of life (see for example, Braun et al 2007; Pinquart 2017, and Easter, Sharpe and Hunt 2015). Rates of depressive and/or anxiety disorders are higher amongst adult carers when compared to the general population. These figures do not mean that you are destined to develop such psychological issues, but carers are clearly more vulnerable. In late 2016, Shine carried out a survey of Plus Ones and found that 58% had experienced stress, and 77% had experienced anxiety.

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Shine’s first Plus One workshop covered how to cope with anxiety.

In addition to psychological difficulties, carers can experience decline in their overall physical health. Physical health problems vary and range from fatigue to insomnia, headache and gastrointestinal issues (Jassem et al 2015).

Positive Experiences

Despite the physical and psychological challenges discussed above, many carers can also identify positive aspects of their experience. Some of the reported positive experiences included being able to give back to someone, knowing the person is being well cared for, improved relationships, personal growth, and an enhanced sense of meaning or purpose (American Psychological Association 2018). Finding meaning and purpose is an experience reported across several groups of carers (Carers UK 2004). Being able to help is a source of satisfaction for many carers, while ‘giving back’ to someone and having an equal or reciprocal relationship are other positive outcomes (Spendelow, Adam and Fairhurst 2017; Buchanan et al 2009), Ribeiro and Paul 2008). The relevance to wellbeing is that experiencing positives from caring help people to cope better with the stress that comes their way.

Taking care of yourself

Your wellbeing is influenced by many factors. Believing that just one ‘thing’ is the cause of any experienced psychological difficulties is usually inaccurate and unhelpful. Attempts to improve your wellbeing, therefore, usually involves taking several factors into consideration. Look, I could bang on here about all the things you know you should be doing already: getting plenty of sleep, exercising, and eating vegetables. Yes, this is all true and fundamental to your health. But I won’t repeat the same advice given millions of times already.

Perhaps a more useful strategy is to ask ‘What barriers stop you from taking better care of yourself?’ and, more importantly, ‘What can you do about these barriers?’. Some barriers are physical: for instance, you don’t think you have time to look after yourself. Other barriers are psychological. For example, some carers feel that it is selfish to prioritise themselves over the loved one they support. Asking what barriers exist (and why) helps work out what might have gone wrong with previous failed attempts to take better care of yourself. These barriers need to be directly addressed, otherwise it doesn’t matter how many times you are told to go for a walk and eat some broccoli.

It may be that you need to discuss this issue with a sensible person that you trust in order to make progress with your wellbeing. Having said this, here are a few questions you can ponder to get you thinking more about barriers to better self-care:

  • What emotions might you experience if you put more time into self-care?
  • Why do you think you would experience those particular emotions?
  • What do these emotions say about your attitude to self-care?
  • What would have to change in your life to result in more time given to your wellbeing?
  • How might the wellbeing of the person you support be negatively affected if you spent more time looking after yourself?
  • What would be the worse thing someone could say about you as a carer? How does that influence your self-care?

 The Bottom Line

Carer wellbeing matters, both to the quality of life of the carer, and the wellbeing of the loved one that the carer supports. To cope with the huge challenges brought about by cancer, you need to be thinking of self-care strategies that are positive and sustainable over the long-term. If you fall over, both you and the person you care for will find things even tougher. Thinking about barriers to self-care can be a useful way to better understand your current approach to your health, and how you can improve it.

Jason is a clinical psychologist with a special interest working with people and their carers affected by chronic illness and disability. He also supported his wife through cancer. He runs his practice in Surrey. See more at www.jasonspendelow.com

To join our Shine Plus One Facebook group, click here. To join the mailing list for Shine Plus One events, please email plusone@shinecancersupport.org.

 

Life, but not as you knew it: Living with dying

Kate Granger is a 33 year-old doctor from Huddersfield who is into cooking, baking and swimming. She’s also terminally ill with sarcoma.  If you’ve never heard of her, you’ll want to go away and Google her (as soon as you finish reading this, of course!).

Kate travels the country speaking about the importance of compassionate care, all the while managing an illness that has tried to slow her down. Her campaign to get medical staff to introduce themselves to patients (#hellomynameis) made 56 million impressions on social media last year and aims to ensure that we maintain and grow the human connection between patients and staff.

We are hugely honoured that Kate has written this weeks’s blog.  In it, she tackles the tough but vital issue of how she continues to live while she’s dying, the plans she’s made for her funeral and where she’d like to die – but also all the things that she’s enjoying about life.  We’d love to know what you think – drop a comment at the end, or tweet us @shinecancersupport or check out our website which has more info about the support we offer young adults with cancer.


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Kate Granger

“So I’m going to die then?” This was my typically ‘face things head on’ reaction to the devastating news that my cancer was one of the most aggressive type of sarcomas known to humanity and there was no hope of achieving a cure. The tiniest, gentlest nod came back from my consultant oncologist, signalling that I was correct in my interpretation of the information presented to me. That conversation occurred just over three years ago. A huge amount has happened in that time and I have definitely, to coin a phrase, been living life to the full. But I have never shied away from the fact that I’m dying. I’ve thought about it, accepted it, planned for it and prepared those closest to me for it as much as I can.

But you might ask how, at the age of 29, can you just accept your imminent mortality? Being a doctor definitely helps. Death to a geriatrician is a familiar concept – I’ve been certifying the deaths of patients for 10 years; attending cardiac arrest calls and spending time with the palliative care team to develop my specialist interest. All this forced me to consider my own death and think about what a good death would look like in my own world long before illness came knocking at my door. Medical training has also helped me to evaluate the clinical evidence and to understand the prognosis statistics, which all helps with acceptance and pragmatism.

One of my first actions following diagnosis was to ask my husband to phone a solicitor to draw up a will. I’d never thought about making a will; why would I? It was always one of those ‘must do’ things that get pushed to the back of your mind.  A few years ago my husband’s uncle died without a will; it caused endless legal problems and I didn’t want to burden my family with that after my death. So it was done; a relatively simple will was drawn up, signed and sealed.

The next step in planning for my death was to discuss the ever emotive topic of resuscitation. I was crystal clear in my mind that I wanted a Do Not Attempt Resuscitation (DNACPR) form. There was absolutely no doubt about it. I had this strange sensation that I was discussing one of my patients rather than myself as I had the conversation with a slightly stunned consultant. I guess it all comes back to that concept of ‘a good death’. No amount of cardiopulmonary resuscitation was going to cure my cancer and I have ambitions for a peaceful death at home, not a medicalised one.

I then spent many hours while I was unwell, as a consequence of my palliative chemotherapy, writing letters and cards to my loved ones. I made a memory box for Chris, my husband. So many tears were shed writing birthday, Christmas and anniversary cards to a Chris of the future who will be living his life without me. I made a memory book for my nephew and niece who in all likelihood won’t remember their Aunty Kate to illustrate something about my life and my values as a person. I planned my funeral in intricate detail to ensure the event will represent me and be a true celebration of my life.

I try not to think about the very end of my life too much. I would dearly love to die at either my own or my parents’ home, but I’m also well aware that my symptoms may become too difficult to manage in the community and a hospice or even hospital admission may be become necessary. My biggest fear is developing a bowel obstruction which is a distinct possibility given the distribution of my cancer, but it is something I cannot let myself dwell upon too much. I’d like my pain to be as controlled as possible but I would really like not to be too sedated to enable me to interact with my friends and family for as long as possible.

Strange as it sounds I have even chosen the music and candles I would like to have when I’m too ill to get out of bed. I’ve also picked out the books I’d like my mum to read to me almost as a comfort blanket childhood memory. I hate the thought of being too unwell to look after myself and becoming  dependent on others for personal care but I know that time will in all likelihood come.

And now all that planning, thinking and doing is done, I can park it all at the back of my mind and get on with living in the now. One day at a time is my mantra. Each challenge as it comes. When I was diagnosed my professional ambitions to become a consultant were stolen by the cancer. But a couple of weeks ago I set foot on a ward as an Acting Consultant having defied so many odds. I never thought I’d see my niece born and have those precious new-born cuddles but a few weeks ago I did exactly that. I never thought I’d hear my youngest nephew say “Aunty Kate” but he did just a few days ago. No one can ever be sure what is around the corner so it is with some determination that I keep looking forwards, not allowing my dreams to be stifled because of the Big C. But when the time does come to die I’m also comfortable in the knowledge that I will hopefully achieve a peaceful death surrounded by my family and friends.

Kate blogs at http://drkategranger.wordpress.com/.  She’s written two books, The Other Side and The Bright Side, both of which can be bought here.  She tweets as @GrangerKate