Val & Phil

Val shares her husband Phil’s story – he was diagnosed with pancreatic cancer in 2016 and had surgery, chemotherapy and radiotherapy

19 February 2019

In January 2016, my husband Phil had been having mild stomach and back pain. Both he and our GP thought it was a recurrence of IBS (irritable bowel syndrome), which he had a few years ago.

After several visits we asked to be referred to a specialist. We have private medical care so he was quickly referred to a gastroenterologist, who suggested he had an endoscopy. This however showed all was normal.

The pain did persist, although I would emphasise that it was very mild and a couple of paracetamol usually did the trick. It was always worse when he was lying down at night.

After that he had a CT scan which revealed that he had a tumour in the tail of the pancreas. This information was relayed to us on 1st February, 2016.

We were devastated, Phil was a very fit active man. Although he was 72 he still ran his Construction Company, but was looking forward to retiring, having holidays and playing more golf.

Surgery and recovery

There was, however, a glimmer of hope. He was told that the cancer was operable and a distal pancreatectomy and splenectomy was carried out on 21st March. The operation took nine hours and I was informed by the surgeon that it has been a complete success. Phil spent two days in intensive care then five days in the ward, and I brought him home after just a week.

His recovery was nothing short of miraculous. The picture of Phil shown above was taken just three months after his operation! We went back after a fortnight for the results. It was a stage 3 tumour, but it had not spread to surrounding areas and only 3 out of the 17 lymph nodes removed were cancerous. He would therefore need a course of chemotherapy to mop up any lurking growths. We were both heartened by this diagnosis and were told that chemotherapy would start in late May.

Chemotherapy and radiotherapy

He had six months of chemotherapy – adjuvant gemcitabine plus capecitabine. This was completed in November 2016.

Phil did not have any terrible symptoms, he felt a bit nauseous for 2-3 days after chemo, and slept a lot. After 3 days he was his old self again and life carried on as normal. Once the chemo had finished, he had another CT scan and he was told that all was OK and there was no sign of the cancer.

We went on a fortnights cruise to the Mediterranean in June 2017, and it was then that he started to get a lot of pain and we were very fearful that it had come back. He had another scan in August 2017, which confirmed that the cancer had re-occurred. He was told that he had only a few months without treatment, and possibly a year with treatment.

Phil was not to be deterred, life meant so much to him and he opted for treatment. He had a further four months of chemotherapy – just gemcitabine this time. When this had finished he opted to have radiotherapy. He had to wait for a few weeks to give him time to recover from the chemo, and then he had six weeks of radiotherapy (under another oncologist) which finished at the beginning of April. He had capecitabine tablets at the same time as his radiotherapy.

Managing his symptoms

He was also referred to a Sue Ryder Consultant so that his pain could be alleviated. He was put on slow-release morphine, liquid morphine, paracetamol, pregabalin and naproxen. He managed to keep his pain more or less under control.

He was also having a lot of digestion problems, constipation one minute then diarrhoea the next. Radiotherapy had definitely upset his digestive system and he was put on Nutrizym® (a pancreatic enzyme), which improved things a bit.

We then had to wait for a few weeks in order for things to settle down. We decided to go to Tenerife for a week’s holiday, which was wonderful, and then we saw the radiotherapy oncologist in June who said that his cancer markers were down and the tumour was contained and had not spread.

Further chemotherapy

In July 2018 he was referred back to the first oncologist who carried out his original treatment. She said that Phil had completely amazed her, a) by surviving so long and b) by keeping and looking so well.

Because of this she offered him more chemotherapy which began in August, Gemcitabine and Abraxane®, which would be done via a portal inserted in his chest.

Unfortunately, Phil, for the first time, reacted badly to the Abraxane. His feet became very numb, as did his hands, he also felt quite unwell. The oncologist stopped the treatment stating that the treatment was more likely to kill him than the cancer. She said his cancer was now terminal, and he had only a few months to live. After a marriage of 51 years we were absolutely shattered.

We decided to live life to the full. Our motto was “grab each day as it comes, hope for the best, prepare for the worst and two fingers to cancer”. We had several holidays and short breaks. Phil played golf every week. He ate normally, and with the help of the Sue Ryder Consultant was able to manage his pain.

Making the last days count

We crossed our fingers and booked a 10 day holiday to spend Christmas with our son in Dubai. We made it, and had a great time. Phil by that time was eating very little and sleeping more than usual, but his spirits were high. We came home from Dubai and my sister and brother-in-law joined us for New Year’s Eve and we all had a long walk round our home town discussing what car he was going to buy. He was always an optimist and refused to give in to his illness.

On 10th January he was rushed into hospital, he was bleeding into the stomach and the cancer had spread to his liver. They wanted to operate to insert a stent into his liver, but by this time he was more or less unconscious and it was obvious to me that he was dying. I told the consultant surgeon that I really did not want to put him through any more medical intervention, and I managed to get him transferred to a small cottage hospital which had four palliative rooms. I am very thankful that I did this.

On 15th January 2019, Phil had a peaceful and, hopefully, pain free death with me and his two children by his side.

Something to look forward to

As I write this I realise that it is very early days for me as it is only three weeks ago. However, I promised him that I would endeavour to go on with my life, be happy and make the most of each day. I feel isolated, alone and miss him terribly.

I have two children, my daughter lives in France with her French husband and my two granddaughters, and my son and his wife live in Dubai with my two youngest granddaughters. However, I have a wonderful network of good friends who have been marvellous.

I decided I needed to make some plans and have something to look forward to. I am visiting my daughter in France next week, and have booked to go to Dubai for 3 weeks in March. In June I am going for 10 days to Spain with my sister and brother-in-law. I also intend to visit my cousin who lives in Chile, where I grew up – I haven’t been back since I left in 1963.

I have set up a JustGiving page which has raised £1489 towards research into pancreatic cancer!

February 2019