Tom shares his experience of being diagnosed with operable pancreatic cancer when he was 42
On the 24th January 2018, out of the blue, I was diagnosed with pancreatic cancer. Up until the New Year I had been feeling fine. I had just enjoyed a lovely festive season with friends and family and everything seemed normal. However, as January progressed I began to show signs of jaundice. I went to see my GP who booked me in for checks at the hospital the following day.
After two days of blood tests and scans I was called into a room and the doctors told me the news. I had pancreatic cancer, and they had already arranged a bed for me. I was going nowhere. It was a shock. Up until then I had thought it was probably just an infection that could be treated with drugs.
Jaundice is a horrible condition. You are constantly uncomfortable: hot, sweaty and itchy. Not to mention that you look a total fright because your skin and eyes are yellow. The jaundice was a symptom of a bigger issue and its presence meant that the tumour in my pancreas was diagnosed sooner than it might otherwise have been.
In my case the doctors were confident that an operation to remove the tumour could be carried out. The procedure the team had identified was a pancreaticoduodenectomy, also known as the Whipple’s operation. This would include the removal of the gall bladder, part of the duodenum, and the head of the pancreas. Followed by re-stitching and plumbing me back together.
I wasn’t too fazed by the enormity of the operation. I had some understanding of what lay ahead as I’d undergone major spinal surgery when I was younger. Plus, I had complete confidence in the medical team. Anyway, it had to happen and there was a slot available in the coming week and so there was little time to reflect on it.
I could only marvel at the dedication of the amazing surgeons who carried out my operation. I was overwhelmed by the standard of the post-operation care and attention the whole team, both doctors and nurses, gave to me. I felt in such good hands and warmed to each one of them. I was humbled by the efforts they took for me, it felt that they all went the extra mile.
I am gradually mending after the operation. The wound has completely healed, though it is still sore. My taste buds have returned to normal, and I am able to be more active, managing daily walks and I am also starting physiotherapy.
It is tiring to go into town, and feeling vulnerable isn’t easy. For the first months after the operation I carried a walking stick, as a precaution to stop me falling over, and to signal to people around me to take a little more care. A stick however does not get you a seat on a tube, and seats with priority seating signs are routinely occupied.
I have now completed three rounds of chemotherapy. In total there will be six.
In some ways I think the anticipation of the treatment was worse than my experience of it so far. I spend half-a-day each week in the chemotherapy suite, hooked up to an IV drip, and I take tablets at home for the rest of the time.
The night before a treatment I don’t sleep well. I’m not consciously worried or on edge, though clearly under the surface there is something going on. The most frustrating part of the process is waiting for the results of your blood tests. The system is not always a smooth one. Much chasing from the nurses brings no result. The minutes and hours tick past. The treatment can’t be started, or even prepared without a green light from the blood test results.
Patience is vital. There’s nothing to be gained by fighting the flow. You have to go with it. It happens at its own pace. I pass my time reading, listening to music and chatting to the nurses.
Putting life on hold
In October, when my course of chemotherapy comes to an end, I will have taken almost a year out of my working life. Everything just had to stop. I had to cancel all my plans. Pints, walks, galleries, football matches and gigs would have to wait.
At work, I had to step away from client projects. With lots of interesting projects lined up, I had been really excited by what 2018 was going to bring. My employers have been amazing and they have supported me throughout. This has enabled me to down tools at the drop of a hat and focus on my health. They have remained in touch, offering support and encouragement. This is important as it has taken away what would otherwise have been a lot of stress and anxiety. For this I am truly grateful.
I have visited the office a few times and it is always lovely to see my colleagues. I am proud of how everyone responds to seeing me and comes and says hello. I still feel very welcome there. My mind has started to turn to thinking about life after my treatment. It’s coping with the day-to-day, when I am back at work, that concerns me most. Will I be able to make the necessary adjustments?
One of the most important aspects of my recovery has been the fantastic support I have received from my family and friends. I have found that some of my friendships have grown and become stronger, as well as new friendships forming.
Positivity is the only way forward. Life is full of hard knocks, and it is how you respond that matters.