I’m sat at a beautiful hotel, overlooking the sea, surrounded by beer. Life is good. This holiday has also given me a chance to finally finish this blog post, and boy it’s a long one, so please, kettle on and make yourself comfy.
This has actually been written for around about a year…well almost completed. I haven’t shared it because, it’s not everyones favourite conversation topic. In fact some people recoil in horror at the thought of discussing something so horrible, so openly. It is one of the subjects highly on the general taboo list. But it is something that I have felt strongly about for years, and recently a few things have happened which have made me think. Now’s the time world. Now’s the time.
Oh that’s right everybody, welcome to a blog about the lack of real discussion around serious illness and dying.
By real discussion I don’t just mean sitting around talking about darkest thoughts and feelings, that is obviously part of it. But it’s also about feeling great about finding humour in those darkest moments.
Ta dah! I know. Exactly what you expected.
Now before panic sets in. I am very well, no health issues here. Everybody knows I only do major events, car crashes, unexpected blood clots. I’m the girl who can have a tiny cut, and end up having a severe allergic reaction to the plaster. Which to be fair, I probably didn’t need in the first place.
Illness and death is something that has pretty much surrounded my whole life, well since I was 8 years old. So 75% of my life for maths fans out there. That sounds really dramatic, my life has not been doom and gloom. But it certainly has had its fair share of super shit times, but mixed up with a huge amount of much less shit times.
Before 8 the only stressful thing I remember happening, was that I had to have a tooth out because of a nice abcess I’d grown myself. I remember getting knocked out and then waking up at home on the sofa watching The Fox and the Hound. Nothing like waking up from your first anesthetic to a story about an orphaned fox. Talk about mild peril.
Not long after the tooth out drama, when I was 8, my family that I had known changed dramatically. My big, strong, Royal Merchant Serving, long time policeman Dad had a brain tumour, and in typical fashion, not just any old brain tumour. One of the rarest available. Top work by my father there. He had found himself with a Benign Central Neurocytoma.
Benign is a great word, most of the time. Not so much for this one, as yes it is great it doesn’t run the risk of spreading to other parts of your body, but the location of the primary tumour is smack bam in the middle of your brain. Surrounded by delicate blood vessels and, what I imagine to be, brain goo and other important functions such as being able to walk/talk/write. A couple of Central Neurocytoma facts for you:
- It was first described in medical journels in 1982, a mere 13 years before Papa C found himself with one of the bastards.
- It only makes up 0.25%-0.50% of intercranial tumours that are found.
I think that sums up just how unlucky the guy was to get it, I imagine he had a higher possibilty of winning the lottery. Now that would’ve been a different blog post all together. Written from the family yacht.
I’m going to take you back to 1995, John Major was Prime Minister, the UK had a heatwave which has only just met its match in 2018. Gangsta’s Paradise was blaring from every Hi-Fi and discman, and my Mum and Dad had just been hit with the diagnosis from hell. The chances of him making it through the first operation to remove the tumour were slim.
I remember suddenly being at Nan and Grandads a lot, always dishing up oven pizzas with extra cheese on, and Nan now did all of our ironing. I did know that Dad was poorly, but in all honesty that is all I remember. Me and my brother went to school as normal and we saw Mum in between hospital trips. I might only remember this because my brain has decided to repress some memories and feelings, but that is completely normal, for anyone, at any age when you have trauma going on in your life. It’s not a bad thing, it is a coping mechanism.
Now I’m going to skip a whopping sixteen years forward. Two major brain surgeries and batches of radiotherepy for my Dad later, he died.
Over these sixteen years, Dad went through a hell of a lot. He made a recovery after the first operation and even went back to work, but it was closely followed four years later by the tumour growing back, and he was back in surgery. I remember my Mum giving me a letter to give to my form tutor explaining that my Dad was having brain surgery that day, almost like a get out of jail free card for the day incase I decided to go on a rampage in assembly. Looking back I should have used it more to my advantage.
I was 24 at this point and Dads health had very quickly taken a massive downward spiral. He was sleeping dowstairs in a hospital bed at home and had carers come in regularly to help Mum with looking after him. I remember one Friday I was getting ready for work and had the most overwhelming feeling that I shouldn’t go. Dads health had been getting worse everyday.
Now is my first top tip for anybody going through a similar situation. Trust thoses insticts.
I made my way to my Mum and Dads and sat whilst a nurse visited and said it is time to make our move over to the hospice. We didn’t have long to make some very big decisions and before we knew it, an ambulance had pulled up outside to take him there. We made our way with the nicest paramedic ever, who popped on the radio so Dad could hear some music. Something that I have forever been grateful for. It took the desperate sadness away from that moment, and added in that great dark humour moment you need there.
What radio station do you put on in that situation. Heart radio is the answer to that.
The hospice was amazing, the general misconception of it just being a place to go and die is well and truly wrong. Hospices offer day clubs for people with terminal illnesses, and gives respite to their carers. They offer complementary therapies (please note my lack of using alternative therapies), they help with pain management, they offer grievance counselling to family. All of this with very very limited funding, mainly relying on charity donations. Hospices will forever blow my mind with the level of care they offer to everyone involved.
So with that…I went to work. That’s right, not that day. But the next. This is where trusting your instincts come into play. I knew Dads death was soon. But not imminent . I went to work on the Saturday and Sunday. On the Sunday I went out for leaving drinks for one of my favourite ever people I have worked with. At the time my mind was completely torn. There I was, eating nachos and drinking more jugs of cocktails than what should be humanly possible. On the other side was my Dad dying in a hospice. Should I have felt guilty. Hell no. He would not have wanted me to be sat staring at him whilst he wasn’t ready to leave yet. He would’ve wanted me to be drinking rum with my favourites. From the very first day we got to the hospice I was insistent on not worrying until Thursday. Again…trust and believe those instincts. They help and guide you.
I called work on the Monday and said I’m done for a while and I would keep them updated. To the hospice I went with my hangover McDonalds and a very large coke. Family were arriving in shifts, for some I found it was something they felt they needed to do. For others, it was a ‘too hard to deal with’ situation.
Here is the start of my harsh talk. Controversial. I know. People that know me, will not be suprised by this. Here we go.
Sort yourselves out. If somebody that you love is dying. Visit them. Do not pull the ‘It’s too hard for me to see them like this. I want to remember them when they were well’, card. They may be gaunt, grey coloured, not talking, but you should feel privileged to be spending their last moments alive with them. They are reserved for our nearest and dearest and for me are the most important moments of a persons life.
Dying is the only one thing in life that is a guaranteed.
If somebody you love is facing an unexpected, early, or perfectly on time departure from this world, take time out of your life and spend some with them. I would be seriously pissed if when I die, everyone pulled the ‘too sad’ card. Seriously crowd yourself around me and tell me what I meant to you. Drink Jagerbombs and snakebite around me. Play beer pong. Even if what I meant to you was a massive pain in the arse. I want to hear it. Trust me. I will be laughing.
Any medical professional is coy when it comes to giving an expected amount of time left statement. But on the Wednesday in the hospice there was a definite shift. For the first time in that week we were told that if we wanted to stay that night that it was ok.
Take all of those subtle statements as gospel. That translated as, stay tonight. Tonight is the night.
They settled us in with recliner sofas, gave us something to play Dad’s favourite music on, and a TV to watch whatever we wanted. One of the hospice nurses who had also spent time with Dad for years previously at various respite days, told us that the last sense that people lose is hearing.
We relaxed, my brother watched West Wing, we played music and eventually all started to fall asleep listening to Dad’s breathing. I very vividly remember my last toilet break before Dad died. I looked in the mirror, I looked exhausted. I was wearing a denim skirt and a burgendy jumper, which I instantly threw away after. I put on a lip balm from Lush, which I have encountered a few times since which has instantly thrown me back straight into that moment.
A nurse came in to move Dad. Not long after Mum saw the time and said that it is Thursday. The very day that my gut instinct had given me a pre- warning about. Dad’s breathing changed and suddenly the fantastic dark humour kicked back in.
What happens when a family is gathered around a dying loved one in recliner chairs.
They struggle to get out of them when the time comes.
My Mum, brother and I all struggled relentlessly to get ourselves out of those bloody recliner chairs. Kicking and pressing buttons to release us from their brown leather grips.
The reason I’m telling the world all of this, is because it is more than okay to.
The reason for this whole blog post is to try and get rid of the illness and death fear.
Death to everyone at somepoint in their life is unknown. It is only unknown because it isn’t spoken openly enough about. If it was spoken about more, then dealing with someone close to you dying wouldn’t be as scary as it can feel.
Dying is a process. It’s as simple as that.
From this I want to take a moment to talk about my Mum. The legend to many that is Mama C. The legend that before Dad was diagnosed couldn’t drive, then after finding out, jumped herself into a learner car because she had to, to keep the family going. The woman that completely killed the gender roles for me. If you need to do something you don’t need a man to help you. The woman who taught me how to deal with the toughest times thrown smack bam in your face.
Children will be absolutely fine through this. They will be stronger and more powerful than you can imagine in the lowest times.
Death isn’t to be feared. Serious illness isn’t to be sssshhheeeddd until through ‘treatment’. It should be lived through.
It is not a ‘journey’… and hell no it is not a ‘battle’. A battle or fight implies a winner or a loser, and there is not one person in this world who faces cancer, alzheimers, ANYTHING, who should feel like their outcome would be to lose.
And with that…over and out.
Peace up. A town down x