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The D word – Breaking the death taboo

Possible trigger warning. Let’s talk about the elephant in the room. Death. When I first got diagnosed, and all the way through treatment I could get a little bit obsessed with my prognosis. “But what are my chances? If you had to bet on it…” 

I would quiz my doctors about it whilst they resolutely refused to answer the question. I get why not now, mainly because I wasn’t at the point where we were talking about anything other than working on getting rid of the cancer, and also because this damned disease is so completely unpredictable. 

One person will respond brilliantly to treatment, and never have a recurrence, whilst another will get wiped out in a matter of months. And the honest truth is that, at best, when they answer these kind of questions, they are giving you an educated guess. By the time the stats are published, the treatment received by the people behind the numbers, is at least 5 years old. In the world of oncology, where there are new trials and developments all the time, five years is a long time, and your prognosis 5 years ago may be very different from right now.

And even if this wasn’t the case, there are cases which buck the trends all the time. The person with the “good cancer” dying far too swiftly, the stage 4 with months to live actually surviving for years on end. They have absolutely no concrete way of telling how your cancer will respond to treatment, and it is an ever moving target.

Meanwhile, any mention of the “D” word around friends and family tends to lead to a flurry of “don’t talk like that” “you have to think positive” “you’re a fighter, why would you even say that” accompanied by sad eyes, tilted heads and secret messages to my husband asking how I’m doing… But funnily enough, a cancer diagnosis does bring the idea of death front of mind, and I think we all need to stop avoiding the subject. 

There is a charity called Dying Matters, and one of their main reasons for being is to break the taboo around death and get us talking about it more. I think this is an excellent idea, and maybe if we were a bit more open about discussing dying there would be less stigma and cancer patients would be better able to talk about how they feel.

Feelings like “I’m worried I won’t get to see my children grow up” or “I’m worried that my husband will kill himself with beer and pizza if I’m not around shoving the odd vegetable onto his plate occasionally” or “I’m not done yet. I still have things to do, places to see” or even just “I’m scared of dying”. 

These are all perfectly valid feelings that are completely natural to be feeling, especially when you have been diagnosed with cancer and are staring your mortality in the face, and yet when you say them out loud, people think you are “giving up” or not being positive enough. They chivvy you along with a brisk “you can’t think like that, you need to stay positive”

Seriously, I remember at one point worrying that I wasn’t being positive enough and this might actually, genuinely harm my chances of getting better – obviously complete poppycock, but when you are diagnosed with a potentially life threatening disease and yet no one will talk about death with you, it can give you crazy thoughts! 

I also think that if we break the taboos about talking about death, we can start to lose a lot of the really annoying euphemisms used around the matter – phrases like “she lost her battle with cancer” said in hushed tones as though it was something shameful and as though the bad luck was contagious. No, what you meant to say is “she died of cancer” Because it is a shitty disease, and often kills people. Passed on, was called home, gained their angel wings, why are we so scared to call a spade a spade?

Personally I think it has a lot to do with fear – no one wants to die, and none of us know exactly what (if anything) happens next, and that is quite a scary thought to consider. All living things have a built-in need to survive, so it goes against the grain to contemplate death. 

For myself, I never really thought that I wouldn’t beat the cancer when I was diagnosed, and I never really thought that the cancer was going to win – at least not this time around. This doesn’t mean that I didn’t/don’t think about death quite a bit. Especially when I had to attend a funeral, less than a week after diagnosis. On reflection, this was not the best thing for my mental health at the time. I sat through the whole thing thinking about how this could be me, how my kids would cope, and crying my eyes out for them, and for my situation. I was grieving for my pre-cancer self, for the end of my life as I knew it, out of fear for what the future would hold, and I didn’t stop crying for 3 days afterwards!

Re: the cancer. I suspect that at some point it may well come back, and I think ultimately, I may have been presented with what will at some point (hopefully many, many, many years from now!) ultimately be the death of me. This is not me being morbid, or negative, it is just a fact of what I feel.

I may be wrong, who knows. I could get hit by a bus tomorrow (although that would really suck given what I have just gone through in order to stay alive!). However, I think one of the things that cancer has done for me, is to show me that none of us are infallible, that life is short and fleeting, and confronted me with hard evidence of my own (and those around me) potential to be struck by lightning at any moment. 

So yes, I do think about death, and I don’t think that is weird or morbid, and I’m trying to embrace it and normalise the conversation about it with those around me – not to make them sad, but so that they know what I want, and also get more comfortable with the idea for themselves. Death is a fact of life and we need to stop being too scared to contemplate or even discuss it. 

So here are the things that I think about when I think about my death…

  1. Shit! I really wish I’d taken out more life insurance/critical illness cover when I could!! Incidentally, having learnt my lesson with my own situation, my husband is now insured to the hilt, and always wears a slightly hunted expression now he knows just how much he is worth to us all should anything happen to him… And I have to confess, when he is being really annoying, the thought does occasionally cross my mind 😀
  2. Double shit! I really do need to get a will sorted out!! Something that is completely ridiculous as we have will-writers listed in our directory and I really have no excuse. I should just call them and get it sorted. Today.
  3. My funeral – I’ve always loved a party, so it is only natural that I have thought long and hard about this – my final soiree! I want a non-denomination funeral where my friends and family suggest music/readings/poetry that reminds them of me and it should be a celebration. I would hope there is at least one Madonna song! I want a cardboard box coffin, because I don’t see the point in wasting resources on a coffin which is literally going to be set on fire, and then after the deed is done I want everyone to go to the pub, get completely sloshed, and eat pizza & cake. I will make a playlist, and everyone will be forced to enjoy my “eclectic” taste in music which could range from anything from Prince to Florence & the Machine to S Club 7 to the Beatles. It will be my most epic playlist ever! No one will be allowed to leave before midnight, and only with a shot of something strong (jagermeister, tequila etc) in their belly to see them on their way
  4. My final resting place. After I have been cremated, I would then like my ashes to be used for a) to create two diamonds (it’s a thing diamonds from ashes)- one for each of my girls b) buried under a rose bush – I liked this idea, but given my ability to kill all plants is quite legendary, my daughter suggested this was only so I could “claim my final victim” c) scattered in the sea at Foz Do Arelho in Portugal which is one of my favourite places in the world and always gives me peace. If I can do all three (because I am basically greedy and indecisive) then brilliant!!
  5. What will happen to my soul? Some form of heaven/hell, reincarnation, spirits wafting around looking after loved ones, or nothing at all? Obviously I haven’t worked out the answer to this one, although I have some theories which I like (which is all any of us can hope to achieve). Personally I’m not religious, although I am quite spiritual, and I’ve always believed that you should be good, and nice, and tolerant, and accepting, and treat others with respect and as you would wish to be treated. Hopefully if there is some “good place” of some sort or another or if karma exists, then these values will stand me in good stead. If there is no life after death, then at least with these values I can die knowing I wasn’t a complete arsehole in life.
  6. My kids. I have raised two amazing human beings, and I just know they will continue to be incredible, strong, smart, sassy and beautiful women with or without me. Hopefully with, and for a very long time – I plan on being a part of as many of their milestones as I possibly can – probably being over the top, loud and overbearing! But even if/when I’m not physically around for them anymore that they remember everything I taught/showed them, know how much I love them and am so incredibly proud of everything they have/will become, and always feel my spirit as a part of them.
  7. What do I want to achieve/do before I die? OK so I’m probably too far down the line in my career to change tack and be the one that discovers a cure for cancer. We can’t all run around winning Nobel peace prizes and stuff, so I guess my legacy is going to have to be a bit more pedestrian… I want to eat pasta in Italy, I want to visit Malaysia. In fact, I want to travel full stop. I want to build this website so that it fulfils my vision of helping as many people affected with cancer as possible, and become a big enough entity that it will continue on, even if I’m not around to keep the cogs turning. I want to spend as much time with my family and friends as I possibly can, experiencing good food, good wine, and good times, and I want to be remembered for the good parts of my character and not my faults. 

So there you go. My contemplation’s around death. If you are on this site, then you may well be staring down the barrel of either your own or someone close to your mortality. My advice would be to embrace it. I don’t mean for one second that you shouldn’t fight it, that you shouldn’t do everything in your power to keep it at bay. But don’t be afraid to think about and discuss it with those around you, what your thoughts are, what you want, how you feel.

You are going to have the thoughts anyway, why not bring them out of the shadows, into the open, own the feelings and also start to normalise the conversation around death with those around you. 

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