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Simon

Posted by: Simon 18 December 2019

Simon was diagnosed with pancreatic cancer in 2017, when he was 42. He shares his experience of having surgery and chemotherapy.

Simon And His FamilyMy journey began on the 23rd December 2016 whilst away for the Christmas period. I recall having an unsettled sleep as an odd ache was developing around my diaphragm.

As the night progressed, the pain increased to the point where I woke my wife, Jennifer. I went into the bathroom as I didn’t want my 10 year old daughter Mia to see me in pain. As I closed the door, sweat began to pour out of me.

I went back to the bedroom and that was when the pain dial got turned to maximum. The pain bored through to my back and up into my left shoulder. This whole episode lasted for a few hours. For around 36 hours I felt like I’d been hit by a train.

As most people do, I put it down to something to worry about at a later date.

Going to A&E

By the end of January 2017 I became very poorly and decided to go to A&E. As I didn’t have gallstones the assumption was made that I must be an alchoholic, and I was diagnosed with pancreatitis. Two to three days later I was told I could go home. Thankfully I questioned how they had come to this decision as I was still in pain. The consultant said to book me in for a CT scan.

The results came back showing a shadow on my pancreas, but it couldn’t confirm if it was the dreaded ‘C’ word. Although looking back, it was obvious as I was suddenly on a ward surrounded by cancer patients and not alcoholics.

Whilst waiting for referral to the pancreatic specialist, I unfortunately went back to A&E as I had developed a pleural effusion, which is fluid filling up in the sack surrounding your lungs. After 9 days of not being able to sleep laying down and waking up feeling as though I couldn’t get enough air in my lungs, I finally had the fluid drained. I was told later that the fluid was squashing the top of a lung, hence the feeling I couldn’t breathe.

Being diagnosed

In April 2017 I had an endoscopic biopsy taken of my pancreas. I was admitted on 1st May 2017 and confirmation given a day or two later that it was in fact pancreatic cancer. The Pancreatic Cancer Specialist Nurse broke the news to me and gave me all the information I would need for what was to come.

I spent that evening and night mulling over how to break this to my family. The following morning I called my wife and burst into tears. This wasn’t the plan.

Treatment

After another drain around my lungs I had a chest drain to continually extract the build-up. I must admit, this wasn’t pleasant.

My surgery was brought forward a week, so all was ready to go on the 10th May 2017. I was to undergo a radical left pancreatectomy (not the Whipple’s procedure) and a splenectomy (removing the spleen) as the cancer was in the tail of the pancreas.

Recovery was a shock as I’d never had surgery before. The biggest surprise was waking up on the post-operative care unit and feeling amazing because of the mixture of drugs that masked the trauma my body had been through. Thankfully by the 18th May I was discharged to continue my recovery. It’s a huge operation to recover from mentally and physically.

Having chemotherapy

Possibly 6 weeks later, I was back to face a new challenge. The dreaded chemotherapy.

I had six rounds of Capecitabine (tablets each day for 3 weeks, then 1 week off) as well as Gemcitabine (a drip once a week for 3 weeks, followed by a week off).

Thankfully, my veins didn’t like the drip so I was sent to have a PICC line inserted into a deeper vein. This in my opinion was a blessing, as the cannula’s I’d become tired of were no more. It’s definitely the little things that help.

Chemotherapy is definitely different for everyone. I had daily side effects, including quite a few rare ones, and at one point I went to around eight and a half stone at 6ft 2. I had a few issues towards the end of treatment, but I was monitored closely.

Recovery from chemotherapy has been tough as I developed nerve damage in my legs and hands. However, if I was told about this before treatment I would still have had the chemotherapy, as the other option isn’t that appealing.

2 years on

After having chemotherapy for 6 months I rang the bell to celebrate finishing my treatment on the 5th December 2017.

This December, on the 2nd anniversary of ringing the bell, I started helping other cancer patients as a Practical and Emotional Volunteer. I have also gone back to school and I am currently studying to be a Counsellor.

Now that we as a family seem to have moved on from this time in our lives, we try and be as positive and blessed with what we have. Life definitely looks different after cancer, and not in a negative way.

Best Wishes,

Simon.

December 2019

Read more about chemotherapy after surgery