Andrew had an abnormal blood test during a routine health screen and later developed jaundice. He had a stent put into his bile duct and a few weeks later had a Whipple's procedure. Andrew shares his experience of diagnosis, treatment and recovery and his message of hope.
My story began in May 2022. I started having chest pains but like most men ignored it, moaned about it but ignored it. I have been a plumber for 41 years, so my body was beginning to give up on me through constant work, so I put it down to that. My birthday was in June and the day after that I had an NHS text saying I could have another health check- up. I said to my wife, Rachel, that I would mention this to the nurse. I came out of the check- up feeling very smug as she said my weight, heart rate and blood pressure were spot on.
My diagnosis journey
The next day I had another text saying that the bloods taken had shown that my liver wasn’t working properly. I didn’t even know where my liver was. I looked this up and realised that my pain was where the liver is. I contacted my GP and was seen that day. The doctor said she wasn’t overly concerned as I looked well, it could be my gall bladder grumbling or a gall stone. She said come back if it gets worse or I start to look like Bart Simpson, we were both laughing. A week later while shaving I asked Rachel, ‘do my eyes look yellow?’ I was starting to look jaundiced. The worst thing I found with jaundice was the itchy skin.
Andrew with his family
I went downhill quickly
I went back to see my doctor who then said she would refer me as soon as possible, saying not to worry. I was seen within two weeks. I then had an ultrasound scan which showed a build-up of fluid in my stomach area. The consultant said something wasn’t right and I would need a CT scan. We went to see the consultant again after the scan and he thought there was a growth on my pancreas which had pinched my bile duct shut, more tests were needed. At this time, I wasn’t feeling well at all, I had gone downhill really quickly. I had also lost a lot of weight.
Getting a biopsy and a stent in the bile duct
The team decided that they wanted a biopsy of the tumour. This was to be done by an endoscope procedure, at the same time they were going to fit a stent in my bile duct. The endoscope wasn’t pleasant, I was sedated but I wasn’t out and kept opening my eye. The doctor doing the procedure found this very off putting saying to the team give him more anaesthetic. I remember one of the team saying I had had as much as a horse (we laugh about this now). It must have worked as I woke up five hours later. Two days after the stent had been fitted I felt like a new man, all the bile had been drained away. I was called back to see the consultant after the biopsy who confirmed it was cancer of the pancreas.
Learning about the Whipple’s procedure
Myself and Rachel then went to speak with the surgeon who explained it in words we understood. He thought I could be operated on saying the procedure was called Whipple. He did say it was major surgery on par with heart surgery, recovery time would be long. He also said that any of his team could carry out the surgery. When he said that he would see it as an opportunity lost if they couldn’t operate then, that made my mind up. He said I was fit and not overweight.
I had to have a Pet/CT scan just to see how close to blood vessels the tumour was, if this showed it to be ok then I was good to go. I had the scan, it showed I was good to go. I was told it would be up to six weeks for surgery, this wouldn’t make any difference to the tumour as it was coming out. After about a month I got a phone call on a Friday saying they had a cancellation on the Monday and could I go in, no time to think about it.
Feeling emotional on the day of the surgery
The day came, Rachel dropped me at the hospital. I admit I got very emotional walking into reception, once I was being measured for surgical stockings the reality hit home. This was the first time in 57 years I had stayed in hospital. I was taken down to the operating theatre, joking with the team, I have to say I wasn’t nervous. They washed my back and said they were going to put a small injection in my back. I asked, ‘is this it?’, they said ‘no, not yet’. Next thing I wake up in intensive recovery. There were three tubes coming out of my stomach area, a tube through my nose into my abdomen and a big dressing over my wound. I couldn’t move at all. The staff were amazing, reassuring me. I was so high on painkillers I didn’t know what was going on.
After a restless night I was moved to the ward, Rachel and Jack (my son, I have three adult sons Charlie and Joshua) came to see me. I wasn’t very pleasant to them. I apologised to them for being grumpy, they said after what I had been through they weren’t surprised.
The recovery was tough
The following day the physio tried to get me out of bed, I nearly fell over, I couldn’t do it. I kept bringing up loads of bile through the tube into my stomach area, not nice. A nurse called Hope got me out of bed the next day and I did three steps, like her name she gave me hope.
The first week was tough, I’m not going to lie, but as time goes on you get stronger. The surgeon came to see me, he said the surgery was very successful, but patience was needed now. I was perhaps coming home at the end of second week but I started being very sick midway through week two. My stomach wasn’t working yet. I was told this does happen to some people. I was sick for a few days and the tube down to my stomach had to be re-inserted, that was horrible. It did drain bile though and slowly I stopped being sick.
I came home after three weeks. Charlie came to get me, I managed to walk quite a long way to the car with him holding on to me. I am lucky that Joshua, like me, is a plumber, Jack is a builder and between them they took the bath out and fitted a shower tray in our house. I would have struggled to get in and out of a bath because of the wound. I had surgery on October 31st and by Christmas I was well on the way to recovery. I was told I would probably need six months of chemotherapy to mop up anything the surgeons couldn’t see. The biopsy that was taken during surgery showed that of the 27 lymph nodes tested the cancer was in 5, it was stage three.
I had to have chemotherapy for 6 months
I started chemotherapy in January and finished it on June 15th. I was fortunate that my hair only thinned, the oncologist said it doesn’t always fall out. The intravenous chemo wasn’t as bad as I feared. The chemo tablets I had to take alongside the this affected me more than the intravenous chemo itself. I don’t like having a cannula put in, but you get used to it. The good news is that I had a CT scan in April, and it showed that for now I am clear of cancer. I know it is very early days, but the news couldn’t have been better.
There is hope
The reason I decided to write my story is that with this dreadful disease there is hope. It is awful when you are told the news that you have cancer and pancreatic cancer is a nasty one, but if you can have surgery go for it, it is very hard, and you have to be positive. I think it’s harder on the family than you personally, I am fortunate to have a good strong family around me, lots of tears are shed along the way, you have to be strong personally but you will get there.
We are fortunate to live in the UK and to have the NHS. I am also fortunate to live near a leading cancer hospital. We have community cancer nurses locally who came and took my bloods every week. There is lots of information on the Pancreatic Cancer UK website and I found Macmillan cancer support very helpful as far as getting some help with money, losing a wage from the household is a big hit.
Looking ahead to my future
For me personally I am taking up an assessor role with a plumbing association I am a member of, as my days of physical work are done. My pancreas is now working again and is able to produce enough insulin to keep my sugar levels at the right level’s, I am careful though not to eat too many sugary foods. I have had to adapt to this new way of living, small price to pay. The main side effect for me now is tiredness, I was told this would be so. I have another scan if September so let’s just wait and see.