Andy O

Well, my problems all started in the last week of April 2018. I felt terrible, my pee & poo weren’t right, so I thought I’d got food poisoning.

My job is a Bar Steward, and the landlady had no one to cover my shifts, so I soldiered on for the rest of the week feeling bad. The following week there was cover for my shifts, so I took some time off, but things got worse and I went yellow!

So off I went to A&E and saw a doctor who sent me for blood tests, as he said “I can see you’re jaundiced”. A couple of days later I went and saw my GP for the blood test results. After seeing me and the blood results, my GP immediately sent me to the hospital. There I went through a number of other tests and discussions, and after six hours they told me that a bed was available for me.

Getting a diagnosis

Over the next two weeks I went through a number of tests to try and discover what the problem was. They thought it was gallstones. I had ultra sound on the liver, a CT scan, and an endoscopy down my throat.

They discovered a blockage in the bile duct, but they couldn’t budge it. It was then decided to put a drain into my liver to release the bile, as it was causing tremendous itching – so much so that I’d made my legs bleed with all the scratching!

At this point my local hospital decided that they needed to discuss my case with a specialist hospital, so I went home and waited for a call, which I got the next day! The specialist hospital asked to see me the very next day for a meeting with a consultant.

At the meeting the consultant said “Well you know what this is about”, I said “They were looking for stones, couldn’t find them, but found my bile duct blocked”. He proceeded to tell me that my bile duct was blocked with cancer, and the best way forward was to have a five hour operation, where they would remove the cancer and a number of stomach parts, and then re-plumb it. This is known as the Whipple’s procedure.

He asked me to sign the consent form, which I signed, and then told me that I was booked in for the operation in six days, so go and get your pre-ops done now!

Having surgery

I spent the next few days resting and then it was off to hospital on 31st May for a 7am start! After what felt like an age I got the news that a bed was available on the high dependency unit (HDU), and at 11am I went down to theatre.

The next few hours were the easy bit, as I was under anaesthetic and I don’t remember much of the HDU. After three days I was taken to a ward, where the consultant told me that there was more cancer than they expected, but the liver and lymph nodes looked ok. The operation had taken nine hours!

The two weeks on the ward weren’t very pleasant. I had four drains coming out of my stomach, I was connected to a drip for morphine, and I couldn’t eat or drink for five days! Eventually I started to eat and drink small amounts, and when I could eat and poo it was time to be discharged.

The nurses were very professional & patient, but for the two weeks I was there I hardly slept, so I was pretty exhausted when I arrived home in the middle of June.

Chemotherapy

Just a couple of weeks after the operation I received a letter from the oncology department at my local hospital asking me to attend a meeting. When I walked in the oncologist said “You look well!”. He told me that as they caught the cancer early, all looked ok inside, and as I was so strong, they were going to give me a double dose of chemotherapy for six months.

I said “I’m not strong enough!”, “oh yes you are!” he replied. He then gave me documents about the chemo drugs and told me what side effects might occur. He told me that I would have to come off warfarin, a blood-thinning tablet I take, and self-inject anti-coagulant for the next six months – nice!

Two weeks later I started the chemo. I had an infusion of gemcitabine once a week for three weeks, plus six capecitabine tablets every day for three weeks, and then a week off. The cycle was repeated six times!

Dealing with chemotherapy

I found the start of chemo quite stressful as I didn’t know what effect it would have on me. But over the six months I didn’t get bad side effects, no hair loss or mouth ulcers, just very sore feet and stomach. I would be lying if I said that chemo is a walk in the park, it is tough to get through, but I’m afraid it’s the old adage “One day at a time!”

It was a big relief to come off chemo in December 2018. By this time my feet and stomach were very sore, and the chemo makes you feel yuk anyway! But since coming off chemo seven weeks ago the side effects have gradually reduced.

The future and some advice

The blood tests that I’ve recently had are normal, with the tumour marker tests also improving significantly. I saw my oncologist and he said “I have good news for you!”. The CT scan of my stomach was all clear, with no problems. Which is very good news.

So everything is moving in a positive direction, which is a relief! I’m now booked in for a review with the oncologist in 3 months.

So what advice can I give to anyone about to go through all this.

• Try and get as much information about your situation as you can from the health professionals.
• Speak to Macmillan Cancer Support about the benefits you are entitled to, and a financial advisor to assess your finances.
• Speak to, or read, patients experiences via charities like Pancreatic Cancer UK – you’re not the first person to go through these experiences!
• Try and eat good nourishing food, it will be difficult to do so, but if you can it will help your recovery tremendously!
• Find yourself an interest to help focus your mind on something else rather than dwelling on your present situation. It will help the time pass!
• To help you through your treatment and recovery period, you will need assistance from your family and friends. I don’t think you can do it on your own, so make them aware of your situation and take offers of help they give you.
• Finally, try and stay positive (I know this is difficult) and don’t give up!

February 2019