John & Cath

When my husband John was going through his cancer treatment I searched for ‘hopeful’ stories, but unfortunately because of the nature of pancreatic cancer most were ‘sad’ ones. I hope our story will give a boost to people like us looking for some positivity.

Being diagnosed with pancreatic cancer

John was diagnosed in September 2020. He had been suffering from tummy and poo problems for about six months, with lots of hospital visits, and had cameras inserted just about everywhere. He became very jaundiced and was admitted to hospital and had an ERCP procedure (where a stent was fitted in his bile duct).

Subsequently an MRI brought us the shattering news that there was a tumour in the head of the pancreas. Although this was devastating, we felt lucky, which sounds strange, because it was operable.

The next couple of months waiting for the operation were difficult to say the least. Three times I had to call the doctor out because John felt really unwell and was shivering violently. Twice they said it was a water infection but after the third time he was admitted to hospital, where they discovered the stent was blocked and had to be removed and replaced which meant another ERCP. These infections caused by the blockage left him weak and unfortunately delayed the operation to remove the cancer by 4 months.

Having surgery and recovering

In January 2021 John had his Whipple operation. It was the longest day of my life but after 10 hours the consultant rang to say the operation had been successful and they had removed the tumour plus a number of lymph nodes and ‘re-plumbed’ him.

A spell in intensive care and 10 days on the ward were challenging for him, because he suffered from a lot of confusion which distressed him a lot. He said he felt ‘not himself’ and like he wasn’t in control all the time, and had very vivid, troubling dreams. Gradually, they kept moving him to different parts of the ward as he started to improve. I couldn’t be with him due to COVID, so he had to deal with all that on his own.

However, when he got home he recovered really well considering it had been a huge operation with a large scar across his stomach. His appetite was good, he managed to eat well (he now takes Creon with food) and felt well enough to get up and about with short walks within a week or two.

A setback

Although things were going well our euphoria was short lived, as unfortunately histology showed the cancer had gone up to the margins and there was some spread to the lymph nodes. The consultant explained that although this wasn’t the best they had hoped for, it wasn’t the worst and it was advisable to have a course of chemo to prevent the cancer coming back.

Six months of chemo followed – gemcitabine (given as a drip) and capecitabine (taken as tablets). We were warned about side effects, which was quite frightening, but to be honest he coped really well, much better than expected. He was on a 4 week cycle – every Monday for 3 weeks for the infusion drip, tablets twice a day and then the 4^th week off.

His worst problem was fatigue: John has always been very active and got very frustrated that he couldn’t do much. Taking short walks which didn’t tire him too much and resting/sleeping when he needed to helped. Luckily he didn’t suffer sickness, loss of appetite or hair loss from the chemo.

The future

Now for the good news! In August this year he finished his chemo and then we waited anxiously for the results of a scan. It showed all clear with no evidence of cancer. To say we were relieved was an understatement and the consultant told us to go away and enjoy our lives.

John is still feeling tired from the chemo but we are getting out and about and taking short breaks, allowing for COVID! Obviously they need to keep checking him with blood tests every 3 months but we’re keeping positive and looking to the future.

My experience of caring for someone with pancreatic cancer

It’s been a roller coaster and I must admit that I’ve had a couple of tsunami waves of emotion that have hit me hard. I remember one night waking with tears on my face, not knowing why, and for the next 2 days crying every time someone looked at me.

Strangely my daughter was relieved, she said the family had been worried that I was bottling it all in and that maybe tears were my way of de-stressing. That’s not to say I was a blubbering mess all the time – but my advice to other carers who are trying to keep it together and be positive for their loved ones is, it’s alright to give way sometimes to tears, as my daughter said to me – let it all out Mum and then ‘get your big girl pants back on’ – which made me laugh!

I know there’s a long road still ahead of us and probably more bumps in the road, but I hope our story helps others to feel more positive about the future and to ride the roller coaster of emotions which come with good and bad news.

November 2021