Carl, 38 - diagnosed in September 2012 with operable pancreatic adenocarcinoma

28 July 2013

Hello! So, I guess there may be a few reasons why you are reading this, one reason is you have just been told you have pancreatic cancer and maybe its operable, another reason is one of your family members has been told that they have pancreatic cancer and you are doing research; it seems that it affects us all differently but here is my story.

I am not very good at writing, I’m not very poetic, and my vocabulary is minimal. I’m from Yorkshire! I would like to think I’m true to the heart and I am blunt! So let me put it bluntly, when someone tells you “you have cancer”, it’s hard, and when someone tells you it’s “one of the worst cancers you can get”, it’s very hard, but with all the percentages and with all the nastiness, please remember this, as this is the most important bit of my blog, there is always a chance you can survive this.

I have a coping mechanism, and it’s all about positive thinking. I have a list on my phone on reasons why I am going to survive, if I ever get down, I look at this list. This is one of many ways I keep positive. I have also made a dear friend from the forums, we communicate often; no-one knows what it’s like until you have had this experience, so it’s good to talk to someone who is going through the same journey.

I am not going to dress this up, the past few months have been difficult, but not impossible.

I was 38 when I got told I had pancreatic cancer, I was a fit 38, I went to the gym most days. I went to the doctors as I had pain under my rib cage. My GP is great, and took me more seriously than I took myself, I wasn’t sure why I went to the doctors at the beginning, I am not the type of person that went to the doctors much, I’m glad I did now. My skin started to turn yellow, there was a change in my stool, my GP then sent me to the hospital.

I went from hand held medical equipment to then other bigger equipment to see what the issues were, at the start I was told due to my age that the chances are it is gallstones.

I had to lie down in the magnetic tube, and the female voices tell you “breath in, breath out, and breath in, hold your breath……” at this point I started to question if I should start to be worried.

For me at the start paranoia was a key part, the doctor was doing his daily rounds and I questioned each time he came if he acted differently, and then, one day, he walked in with a lot of junior doctors, pulled the curtain around me, and touched my leg before saying something about cancer.

My mind went into overdrive, I tried my best to filter and order my thoughts, I couldn’t, it’s impossible. The doctor walked away to go to the next bed, and the nurse came up to me, at this point I was just stood in the corridor, almost in a childlike state and chewing the top of my T-shirt, trying to make sense of it, when I think back to this moment, I can see it, but there is no sound, so I’m not sure what was said.

Later on another doctor came around, and I was told not to Google it! I then did, and then wished I had taken the doctor’s advice. My world blurred, I often look back to this moment and don’t remember much about it.

My life had just changed! This was the start of my new life…

I could not listen to my usual choice of music at this point, there were too many words in the songs, and suddenly I liked classical music as it doesn’t create any words or bad thoughts. I didn’t need an alarm clock to wake up on a morning anymore; the natural imaginary screaming seemed to work. At this stage, as soon as I woke up, or as soon as I fell asleep, it kept hitting me like a truck. I don’t think now half an hour can pass without me thinking about cancer, but at this point I did not have a second thought that did not involve cancer, for me it was not just in my body, but also in my head, you do learn to deal with this side later on.

My sex life went from interested to none existent. Some people started to act differently with me, some friends I haven’t heard from them at all, I guess when something like this happens, some people simply cannot deal with it, and it’s just an easier option to walk away.

The doctor drew a diagram and wrote some percentages which are frightening, and then told me that I was about to have one of the biggest operations that the body can have.

The operation took most of the day, I went asleep and woke up, and the morphine took the pain away. For a day or two after the operation I was kept in the high dependency unit, I don’t remember much as I slept for the most of it, I was then moved into a normal ward. I was a bit nervous about this because in the high dependency there are 1 nurse to 2 people I believe.

The nurse woke me up at 3am, she told me that they realised that there is a lot of blood coming out of the many tubes that were filtering me and that means I have internal bleeding, my surgeon was on his way, and I had to go back into the high dependency ward.

My surgeon (who is great) came in and said, I had to have a blood transfusion and re-operate due to the internal bleeding. The morphine took the pain away, but it also took the reality away, are you really in hospital or are you really in a war camp, who knows, at least it takes the pain away.

I awoke from my 2nd operation, and started to realise the epidural had not worked, and I could feel the cut and everything, they started to pump morphine into me, but can only do this at a certain rate, strangely the pain is so much it kind of numbs you.

The hospital encourages exercise, it’s hard to get out of bed, but each day for me I could walk a few more steps.

I was in hospital for around 4 weeks, I think it took longer for me as there were 2 operations and due to this, it took longer to heal.

In the past few months I have gone from a 13 stone healthy guy, to someone very ill and 9 stone.

I concentrated on the operation, and taking the tablets, but I then started (and still am) on the physiological side of pancreatic cancer. I did not recognise myself in the mirror, it’s all big eyes and ears, in the hospital I needed help to go to the toilet, I needed help when I had not made the toilet, I needed help, lots of help.

The doctors told me to take my tablets, which I did, but I really had to concentrate on doing so.

You eat, you eat more, in the past it was about looking after yourself and not eating too much, suddenly it was about eating as much as I could.

I did cry a lot, and uncontrollably.

My skin started to lose its yellow tint, I knew I was starting to get better, and started getting more independent.

I went home, and I guess it’s about getting used to your new lifestyle, after all of that its Round Two as the chemotherapy starts.

I did find this hard, the first month or two was ok, but I started being sick around the 3rd month, and built up an association between chemo and everything else which made me sick. If I parked my car in a car park when I went shopping, it reminded me of the car park in the hospital and I was then physically sick, or even just brushing the back of my hand made me sick.

The poor nurses in the chemo ward, I had to have the curtains pulled around me as soon as I walked in.

Everyone kept saying how quickly time was going as the six months passed, but to me, it was slow, but you do get to the end, and when I had a week off and I was not sick, I really appreciated it.

For me at this point it’s a strange time, you give up being seen and getting tested every week, to every three months – it feels like the stabilisers have been taken off your bike for the first time, you want it but are scared at the same time.

When I first found out about pancreatic cancer, I went on the forums like you are now, if you’re like me, you will be looking at the dates, and thinking I cannot find many people who have had it for over five years. I found out I had pancreatic cancer in September 2012, at that point, I went on the Pancreatic Cancer UK website, and all the forums, as pancreatic cancer had taken over everything. I think what happens when you finish chemo though is that pancreatic cancer becomes less of your life, and other things start to replace it.

I have started work again, and I’m going back into the office soon, I have pushed my new business ‘Market Wraps’ and I’m concentrating on that, I have just had a new street food trailer designed and have a few bookings for weddings.

I am going less and less to pancreatic cancer forums and I can imagine after five years people won’t even want to go on to them, and I think that’s why I didn’t find many people like that on there.

Right now, I’m looking forward to going further with my business and pushing it to grow, I recently had my civil partnership, and I’m back in the gym, I’m getting rid of my car and buying a bike.

Things have changed and I know I will never be the person I was, but that doesn’t mean that life ends with pancreatic cancer, you can still enjoy yourself, improve yourself, make yourself feel better, and have dreams, and right now that’s what I’m concentrating on.

July 2013