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In Hope Stories

Just 1% of the national research spend has been allocated to this devastating disease

Carl Piddington

Manchester pub landlord, Carl Piddington, was fit and healthy with three children, when he discovered one day that he could no longer control his hand. After a massive seizure and subsequent tests, Carl was told that his aggressive brain tumour could end his life within a year. Determined to be a long-term survivor, Carl is now eight years on after diagnosis and facing yet more treatments.

 “I know this is terminal. Maybe it will get me, maybe it will be something else, but I’m not going to sit and wait for it. As my dad always used to say, while laying his hands on my shoulders and looking into my eyes: “you are a lion, my son!”


Carl tells his story…

I’m a Manchester lad, born and brought up in Gorton. Happy-go-lucky, I have always loved being around people and music, so it was a dream when we took on the Royal Oak pub. It was the first pub I ever had a drink in! Sandra, my wife, and I had another pub after that one, living above the business and bringing up our three children. We are both grafters, not afraid of hard work.

A big Manchester City FC supporter and always fit and healthy, I played football and tennis several times a week. I was surrounded by good friends, my loving family (including my dad, Coronation Street legend Bill Tarmey), being my own boss and working alongside the love of my life. Life was good.

The very first indication that my life was about to change came in January 2009. I even remember that it was a Tuesday, it’s so stuck in my head as a turning point. I was standing in our kitchen holding a bowl of soup and a spoon, but my hand just wouldn’t dip the spoon into the soup. I knew what I wanted it to do, but I had no control over my hand and had suddenly lost all coordination from my arm down. It was the strangest feeling. I wasn’t in pain or feeling ill, so I told myself that I must just be tired. It’s funny how we do that, make up little stories in our heads to try to explain odd things. No one wants to believe that these unusual moments could mean something as terrifying as cancer.

A few days later and we needed some bits from the supermarket. I was outside the pub, in the car with the key in the ignition, when the same sensation came over me. This time I was intending to move the gear stick, but the signals from my brain were not reaching my hand and it just stayed still. It was as if it was someone else’s hand I was looking at. Two minutes later I had a massive seizure. I managed to call Sandra in the pub and she came out to see me shaking like a salmon in a net with only my seatbelt holding me upright.

Afterwards, my whole body ached. It was like being hit by a train and I thought it must have been a heart attack or a stroke, because of my dad’s medical history. I never even considered a brain tumour. I was so scared by the idea that the seizure could have happened five minutes later, while I was driving, possibly killing myself and others. It made me feel sick to think of what could have occurred.

Blue lights and sirens accompanied me to Tameside Hospital where I spent a week having tests. It soon became clear that it wasn’t a heart attack and the doctors spotted some kind of growth on the top of my brain. I was sent to The Christie for more tests and then on to the Salford Royal to see a neurosurgeon. Every time I was referred on, we became more and more worried that this was serious.

I underwent surgery, to remove as much of the lemon-sized tumour as possible, and to have a biopsy to properly identify it. They were not able to get all of it as its delicate position meant that I could have been paralysed during surgery, but I was told that the operation went well. After an agonising two-week wait for the biopsy results, we heard the shocking news that I had an aggressive glioma, probably stage three or four.

I was sitting there nodding, I hadn’t a clue what that meant, but then I saw Sandra completely break down. She had worked in hospitals years ago and the terms that the doctors were now using about me were horribly familiar to her. Seeing Sandra, and my sister Sara, in tears in the doctor’s office scared me but I pulled it together and asked the obvious question: how long have I got?

I was not prepared for the answer… one year without treatment, maybe five with it. Bang, that hit home. I couldn’t get my head around it. I had been fine one minute and then, just days later, I discover that there’s a lemon-shaped thing in my head trying to kill me. The medical team started talking positively about chemotherapy and radiotherapy, but we were all clear that there was no cure to offer.

Everything was upside-down immediately. I was having a lot of seizures so stopped working and couldn’t be left alone much. There were now hazards for me everywhere I looked: sharp corners, hard floors, stairs. I couldn’t trust myself. The family were amazing; my youngest child was 18 and living at home, while the older two were close by, so everyone mucked in to help look after me and the pub.

I became an expert on my seizures; there were three main kinds. I would get hot and sweaty, physically shaking, sometimes up to 12 times a day. Occasionally it would only be my left hand violently vibrating for a couple of minutes. Then there were the big ones, the grand mal seizures where I might black out completely. Ambulances to hospital became an almost fortnightly activity, whenever I suffered a particularly bad one. I could start to predict when a seizure was coming on, as I would smell burning rubber.

From being my own boss, fit and healthy, I was now dependent on other people. I had always been pretty handy around the house, having spent 20 years in the building trade before the pubs, but now I couldn’t even nip to B&Q without asking my son to drive me. I was determined to keep active and be useful, so I would clean and polish the house, listening to my music. We sold the pub, as it became too much without me able to work, and took on a fish and chip shop.

I attempted to cook at home too, but found it difficult with my poor coordination to work out the cooker. After I had set fire to a couple of tea towels, Sandra gently let me know that cooking hot food probably wasn’t a good idea. She won’t let me near the deep-fat fryer at our chippie! My balance wasn’t good either and I fell downstairs twice, breaking my ribs.

I had regular scans to monitor the tumour and although we had a scare or two along the way, it was generally stable for quite a while. Setting myself goals, I passed the one-year mark and things seemed to be okay, not getting any worse anyway. The doctors told me that if I could last six years, then I might reach the 20% of brain tumour patients who fall into the category of long-term survival. That gave me something to aim at and I’m now on year eight!

Although we lost dad in 2012, and then mum three years later, I have been around to see my children grow into fantastic people. They all live really close by and we spend time together as a family, going to music festivals and events. I’m a doting grandad myself now, looking forward to being able to take my five-year-old grandson to the football!

There have been tough times during the years. Last June, I knew something was wrong when I started experiencing a tinnitus type drumbeat in my head 24/7. It went on for weeks and we went through the normal process to rule out the more innocent explanations like ear wax build up. One day I was walking the dog when I felt a seizure coming. I tried to get myself home quickly but collapsed in our doorway with a grand mal fit.

I was told after a scan that I had a second tumour, this time on my left temporal lobe, and apparently they had seen it on an earlier scan but were just “watching and waiting”. It was infuriating to hear that they had seen a second tumour months ago and not told me about it. They decided to operate again, so now I have two scars on my scalp, like craters around three to four inches wide. Fortunately, the second tumour was benign – I was so happy to hear that word!

I was warned that the most recent operation could cause short-term memory loss, which it certainly has. I keep putting my phone in the fridge! However, it’s also stopped my seizures so I call that a good trade. I have to write everything down before forgetting things, but at least I can now be left alone a bit without scaring my missus. I also have to drink from a beaker with a spout, as my left hand isn’t stable enough to hold a normal mug.

Over the years I have been near death many times, usually in an ambulance, terrified, with sirens blaring. I must be indestructible like Captain Scarlet. We spend a lot of time together (!) so I talk to my tumour, telling it “you’re not going to beat me” and my sister has actually written and laminated an eviction order for Trevor the Tumour. You have to live your life and I really believe in thinking positive and putting up a good fight.

The whole family, and many of our friends, have got behind us and helped raise thousands for Brain Tumour Research. It keeps us busy and motivated. I get angry about the lack of funding and, like my dad who was a patron of Brain Tumour Research, I will always do everything I can to raise awareness. We will keep up annual events like the Bill Tarmey Memorial Trophy; it makes me proud to think we are making a difference.

I suppose I might have become a bit blasé about scans as time went on, everything seemed fine, but cancer has a way of knocking you sideways. Only recently I found out that my second tumour, the previously benign one, had started “misbehaving”. The news came out of the blue and it has shocked the whole family. I have had radiotherapy over the summer and am now looking ahead to many more months of chemotherapy.

I am preparing myself, building up good energy to fight it off again. After all these years, I’ve come to trust alternative treatments as well as the standard ones. I have been on herbal tablets since the start and, although there’s no way of knowing what their effect on the cancer is, I never get colds so they must be strengthening my immune system. I also use cannabis oil; it’s incredible how so many people really believe in cannabis oil for medical purposes, yet it’s not legal. As well as reiki, which makes me feel great afterwards, I use coconut oil and coconut water, plus I have given up dairy, sugar and red meat. I do miss cakes, but you get into a new routine.

At first, trips to the supermarket used to take ages as we would have to read all the ingredients, looking for hidden sugar and things, but we have got the hang of it now. I still have the odd glass of red wine. I enjoy it and you can’t give up everything you like. It puts a smile on my face and I feel like a bit of a rebel! Smiling keeps me well, I honestly believe that.

I have another scan due and they have already said that it’s unlikely that they will operate again, but I have too much to live for to give up now. It’s our silver wedding anniversary in 2019 and we have our dream holidays to take – I want to see the Northern Lights before I go anywhere. I know this is terminal. Maybe it will get me, maybe it will be something else, but I’m not going to sit and wait for it. As my dad always used to say, while laying his hands on my shoulders and looking into my eyes: “you are a lion, my son!”

Carl Piddington
September 2017

 

Brain tumours kill more children and adults under the age of 40 than any other cancer, yet just 1% of the national spend on cancer research has been allocated to this devastating disease. 

If you have been inspired by Carl’s story, you may like to make a donation via www.braintumourresearch.org/donation/donate-now or leave a gift in your will via https://www.braintumourresearch.org/legacy

Together we will find a cure.

The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.

Carl Piddington

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