Carl was diagnosed with pancreatic cancer in 2012, aged 38
We are extremely sad to say that Carl passed away on Sunday 19th June 2017.
Carl was a true gentleman, who touched so many hearts with his tireless work to help others, and will be remembered fondly by all of us at Pancreatic Cancer Action for all he did to support us, and cancer patients.
Carl tells the story, in his own words, of his experience with pancreatic cancer.
My name is Carl, I’m the one on the right, the one with ears!
I am guessing that there will be quite a lot of you reading this that have had that word said to you by a doctor.
I re-wind and re-played it in my head, over and over again, trying my very best to process, cancer! Cancer? Cancer!!!
That was September 2012, I am still trying to process it, but it does get easier to digest.
In September 2012 I would describe myself as an energetic 38 year old, went to the gym most evenings, worked full time as a web developer and used my hobby of cooking for my street food business ‘Market Wraps’ on a weekend, all was great, I was very happy.
40 is a funny age to get cancer, if you sneak into the young adults cancer ward where they have a pool table and a jukebox, I know I would probably get arrested, but on the other hand I feel I’m not ready for the exercise class that involves sat on a comfortable chair and circling your ankles just yet, but less face it, cancer at any age is rubbish I cannot really remember what happened first, I felt tired, I had pains in the right hand side under my rib cage, I had back pains, I started to itch. My GP took a urine sample, and when I went back due to going a slightly yellow colour, my Doctor sent me straight to the hospital.
It’s a good job my doctor took me seriously and my partner was pushing me to the doctors as at this point I was not talking it very seriously, I was making (bad) jokes about disappearing when stood in front of my big yellow van.
The doctors in the hospital told me not to worry, as the chances are it will be gallstone issues, this did calm me down, but at the same time on each piece of equipment that scanned me, the operators always looked concerned, and each piece of equipment seemed to get larger.
The doctors and the student doctors were doing there morning rounds, It was about the seventh day in hospital. I was the last bed they came to, I had a strange feeling something was wrong just due to the amount of student doctors.
“Do you want to stay here, or go somewhere more private?”
I guess I knew something was serious when the doctor said that. One of the problems was that I was in a busy ward that dealt with things like gallstone issues, the doctor moved on to the next ward after spending a couple of minutes saying something about a cancer called pancreatic. I was in total shock, and I am not sure what happened. I called my partner, told him.
I walked up and down the corridor, with the bottom of my t-shirt in my mouth. I was very much in a childlike state. It felt my world had fallen apart, we were half way into buying a house, and to me at that point it seemed important.
I bumped into one of the catering staff, she could see I was in distress. She was one of the regular ones on my ward that fed me so we had talked quite few times, she said I looked strong and I will be able to handle it – I bet she doesn’t know what those words meant to me.
I was told not to google “pancreatic cancer”, I did not understand why, I do now – it was about having the statistics of 3% survival, I stupidly Googled it! Not the type of information you want to read.
I asked the doctor if I “was I going to die” the Dr didn’t look hopeful and said, “We will see.”
The day after several doctors where looking at my scan results. After discussion they came into the room that my partner and I were sat in and explained I could have the Whipple procedure. It is one of the biggest operations a human can have, I wasn’t guaranteed it would be completed successfully and there was still an 80% chance it [the cancer] will come back.
In the first week in October I went into the Yorkshire Cancer Centre for my operation, which took a whole day. There were complications; I had internal bleeding so I was taken back into surgery 3 days later. When I awoke from the second operation I realised the epidural (pain relief) had not worked and I felt everything. The doctors slowly pumped morphine into my system until the pain went. When I was talking about this in counselling, it is that experience is what upset me the most, not the cancer. The surgeon came to see me and told me the Whipple’s procedure had gone very well and everything looked “pristine” inside me. I was told later that my cancer was stage 3 with some spread to local lymph nodes (5 out of 12) but it had been completely removed.
Morphine! That is some crazy stuff! For me it was too much, I was climbing the walls. It made me hallucinate a lot, I didn’t like it so they gave me a less powerful drug.
I was in hospital for 4 weeks. For me it a process of one step at a time, getting out of bed, walking, eating. I went from 13 stone to 9 stone.
My nurse told me that shock would hit me when I get home, it did, sometimes I was OK, and then I would sob uncontrollably.
Cancer doesn’t just effect what is happening in your body, it effects your esteem, anxiety, looks, stress and of course your finances.
There is help out there for all of this, I found Macmillan Cancer Support very helpful.
I started chemotherapy the following January for 6 months. I was selected to go on a trial which was supposed to improve my chances of staying cancer free. I was given gemcitabine via a drip and a tablet (capecitabine) to take alongside it. This chemo is supposed to be well tolerated, but sadly I am apparently very sensitive to the chemo poisons and spent 3 days post chemo being sick. By the time I was feeling better it was generally time for the next dose. That lasted for 6 long months! People would say “wow time’s flying” but for me that wasn’t the case.
I decided to try and get better quickly, I cut my hours down at work and worked on a project for my business, and yet again, it all started to slowly get back to some normality, I was excited about the future again.
My partner and I decided to get civil partnered, it was a great magical summer, most of our friends and family came, it was lovely, a real celebration of life, in every photo everyone was smiling.
I am not sure how I could have done all this without my loving partner and family and friends.
Some friendships have changed through this period, some friendships had become stronger some have disappeared, with what has happened I try to show a bit more compassion, I guess some people just do not know what to say and cannot deal with this situation.
I have wrote a slightly comic twist on this on my blog about this.
It was late November 2013, I was rushing around as I had a meeting to sign a contract on a catering unit, this was to build an industrial kitchen to push my business further, I was very excited about this as I have worked hard and. I felt it was the next stage. The phone rang, it was my doctor’s secretary, she said my tumour marker CA19-9 had gone up to 90 and anything above 37 is considered abnormal and as they were concerned the cancer had come back they asked me to come in for a scan to confirm this. I put the phone down and cancelled the appointment of signing the contract of the kitchen unit.
It was my 40th birthday in London, the CT scan was booked in for the next week back in Leeds but we wanted to get away from thinking about the big C, and celebrate the big 40. It was a great weekend, the hotel upgraded us after I slyly wrote we are escaping cancer in the hotel booking section for under dietary requirement. The hotel was lovely. On my birthday my partner and I had left a bar after just one drink and went to bed. I was not feeling great, but fell asleep. At 2 am I woke up and could not tell if I was going to be sick, or I needed the loo. I don’t want to go into greater description but let’s put it this way, I bet the hotel wished they didn’t upgrade us. I was bleeding everywhere from my backside and I collapsed, an ambulance came. After more x-rays they found it had nothing to do with cancer it was yet again internal bleeding, but I was also told after a CT scan that they found a 2cm tumour on my liver.
Back in Leeds, my doctor said they would not operate on this tumour as they feel it had already spread once and so in their opinion was lurking in the background waiting to pop up in other places. So, chemotherapy started again called FOLFIRINOX. This is a combination of 3 types of chemo and I was told this was not to save my life but to prolong it. This left us both devastated for a 2nd time and in fact this hit harder than the first, as the first time there was a lot more hope.
I did get warned my hair would fall out, but I didn’t realise it would all in one day. I wish I had just shaved it all before it happened now. The 12 o’clock stage was not the best of looks.
More about this here on my blog.
I am on chemo right now. It’s been nearly 3 months and has been quite toxic, and made me quite sick, I am in bed for about 8 days and then it’s time to prepare to have more chemo as I have it once every fortnight.
More information here on my blog about this:
It’s takes over a week to manage to stagger out of bed.
The sickness drive is attached to me for a week. A sickness drive is a large injection that with time mechanically pumps more anti-sickness drugs into me, and it does work.
My partner started to look at alternative ways we can deal with this cancer. He found a procedure called nano-knife but this is only done in one private hospital in London and luckily I have private medical insurance through my work. However, there were a few issues with my private healthcare, and they would not cover it, so what was decided was to have a (cheaper) different procedure that did the same thing but instead of electrifying the tumour they used heat, this was called radio-frequency ablation. It cost £2000, and not the £13000 it would of cost for the nano-knife. We went to London to Harley Street.
I did sign a contract to say something like, don’t sign a contract in the next 48 hours. I didn’t really understand why, until after the procedure.
I did feel pain, and Professor Leen did say it would feel like I have been kicked, but what he didn’t say was, by a horse! But thankfully the drugs still put a smile on my face, and the pain was fine, a couple of pain killers and it was not that bad.
I think it does involve some strong drugs because when I came around I could not stop talking – this poor nurse could not leave my room! And I felt at that point I would sign anything!
With that in mind, I decided to leave the hospital! I did ask the nurse if I could leave the room and she said I was allowed to walk down the corridor, but down the corridor was the lift and, well, I decided that I felt fine and I wanted to go shopping!
I must admit, I did get some strange looks in the supermarket, I guess this is due to wearing a night gown. The night gown look is extremely popular in Morrisons in Hunslet, Leeds, but not in Waitrose on Harley Street!
I am now waiting on the results and have another trip to London next week.
But, after my tumour marker CA19-9, had gone up to 90, it then went to 230, and once it started going in that direction I decided not to take much notice. But then I was told after the procedure in London it went down to 73 and then, as from the other day, it’s now down to 31, putting me back in the normal readings again, I’m hoping it will go back to the 7s it used to be.
Cancer as taught me a few lessons, I started this blog describing me at 38. At 40 and with the experience that cancer as given me, I am trying to get to know myself now.
I have found out I have more strength more than I thought I had, but maybe we all have that strength when faced with this.
People have described be as ‘inspirational’, I knew this was a major complement, and when people say it, I thank them, but I did not really understand what it meant. I looked it up as I know my vocabulary is not the best.
Inspirational – imparting a divine influence on the mind and soul
Well! Yet again, I still didn’t understand! So I asked my partner why people said it.
He said, he thinks it’s the way I am dealing with the situation. Now if that’s what it is, I must admit, I feel a bit of a fake.
If I could run away from it, I would. I would run and run and not look back, not the most inspirational actions, but sadly I can’t. So, personally I would recommend to find the best way to deal with it, and I think if you do this you will find that the heavy weight on your back gets a little lighter.
Dealing with it is, and probably will always be, work in progress. To help myself and hopefully others I write a blog. I try and do my bit for pancreatic cancer to bring more awareness, and I am trying to live my life as close as I can to the one I had, I still have not let go of my dreams, and I still hope one day I will sign the contract to get the kitchen built to go further with my business.
My blog is at: http://carldenning.blogspot.co.uk
Thank you for reading x
Carl, March 2014.