Julie

My husband Stephen had a disturbed night on New Years Eve 2019 due to abdominal pain. He very rarely had a drink but we had been to a party and he had had 2 bottles of beer, so we thought this could have been causing it.

The next morning the pain had gone, but he felt very fatigued. Because he had underlying medical conditions we always had a heightened awareness and reaction to any changes or developments. With this in mind we went online and booked a doctor’s appointment “to be on the safe side”.

The appointment was not until the end of January. By mid-January, the abdominal pain wasn’t much of a problem, but the fatigue was more apparent. On 15th January, Stephen’s skin appeared to have a yellow tinge (jaundice). We managed to reschedule the doctor’s appointment to the 17th.

Being diagnosed

When we saw the doctor, he noted the symptoms and yellow skin and conducted an abdominal examination. He took blood tests and warned us we could possibly be looking at something very serious. He said he would arrange an emergency appointment with the relevant hospital consultant. This appointment was arranged for 22nd January.

Not far into this appointment the consultant advised that she suspected a pancreatic tumour which was blocking the bile duct. He was kept in hospital and had a CT scan later that afternoon. The following day we were told the scan had revealed a pancreatic tumour which had spread to the liver. The immediate plan was to fit a bile duct stent to clear the blockage, this took place the following week and Stephen was kept in hospital to prepare him for the procedure. It all went to plan and he was sent home from hospital the following day.

An oncologist appointment followed two weeks later where it was explained that we were facing a terminal diagnosis of “months not years”. Neither Stephen nor myself wanted to know the predicted timescale.

Chemotherapy

He was offered chemotherapy to alleviate symptoms but was told it would not extend his life more than months. At this stage we were also put in touch with our local hospice and the Macmillan nurse contacted Stephen and arranged to visit the day before my 60th birthday.

Stephen’s chemotherapy began at the beginning of March, which preceded his worst night since diagnosis. He became very breathless when going upstairs to bed, and once in bed the breathlessness continued. He had a trembling episode, stomach pain, indigestion and a hot sweat. The following morning he awoke feeling improved but very tired and had another trembling episode which lasted for 15mins. During the trembling I held him in my arms and we both concentrated on deep breathing together, this seemed to help. His appetite was very poor and he slept all day until about 7pm.

That week we went to the Hospice Day Club, to which we were both invited to attend. This was a good day which we both enjoyed and got a lot out of. Stephen had felt reasonable all day but was exhausted on his return home, also he felt nauseous so took the anti-sickness medication. Again his appetite was very poor, he seemed to prefer drinking milk to proper meals.

The following few days were better, but the night sweats seemed to have become a constant feature now. On the Sunday Stephen admitted to hospital with neutropenic sepsis, his temperature peaked at 39.9˚C! He had three days in hospital with IV antibiotics.

Because of these events and the fact that we had told that the chemo was to help with symptoms as appose to prolonging life Stephen decided to call a halt to the chemotherapy. This was a decision I fully respected and supported. Our thoughts were that it was now the quality of life which was most important.

Making plans and having a focus

We lived in a fourteen room farmhouse at this stage and we both accepted that once on my own the house would be far too big for me to manage, both physically and financially. Stephen was quite anxious for things to be sorted out for me. Out of the blue an opportunity presented itself as a 2 bedroom cottage became available about 500 metres from where we lived. We decided to seize this opportunity and move.

This decision gave Stephen a whole new focus in his life. His days were filled with organising and planning for the new house. He had days when he was very tired, days when he didn’t get up and days which were relatively good. He took things one day at a time and got on with the arrangements on the days he felt up to it. I am certain this is what kept him going, he had always devoted his life to making sure I always had everything I need and this wasn’t going to stop now.

We moved house on 21st April, it was hard going but we managed it. We were happy and content with the move. At this stage Stephen seemed to be doing reasonable and not having much in the way of pain although his appetite wasn’t good at all. He had Zomorph tablets morning and night and very occasionally a measure of Oramorph. At the beginning of May Stephen developed a couple of pressure sores so the district nurse started regular visits to check on these. Sickness hadn’t really been a feature of Stephen’s symptoms but on 17th May he had a prolonged bout of vomiting which lasted until midnight.

Stephen was prescribed Dexamethasone (a steroid) which made him feel improved for a day or two and his appetite got a bit better. But by the end of the week his mobility wasn’t as good and he began to feel a bit wobbly when moving about.

Towards the end

Wednesday 27 May Stephen had stomach pain and also a chest infection which was making him weak and breathless, he was prescribed antibiotics. He stayed in bed for the next three days, but did manage a small portion of fish and chips (his favourite) on the Friday.

Saturday morning, there was a real turnaround, he got up and we spent the morning doing DIY jobs around the house, which was quite unbelievable after the last few days. Sadly this renewed energy wasn’t to last. He was tired in the afternoon so I suggested we went back upstairs so he could get comfortable and we could watch TV together. When we got to the top of the stairs, all his energy seemed to go and he was on the floor. He didn’t so much fall as just wilt to the floor. I had to call an ambulance crew to get him up and into bed.

The days that followed saw Stephen getting weaker bit by bit and more tired. His appetite was almost non-existent, but he did drink milk, pop and fruit juice, and the odd ice lolly. He was staying in bed now and I was spending my days sat on the bed beside him. He slept a lot and we watched TV, talked and listened to the radio. We watched DVD’s of our favourite films, laughed and wandered down memory lane. It was on one of these afternoons he said “I am really happy with this house for you”, which for me made all the effort of the move worthwhile.

Pain wasn’t a feature, nor was sickness. We had always planned for Stephen to be at home until as near to the end as possible and then go into the hospice when he needed to, we both realised we were nearing this time. Our daughter and Grandaughter came to stay on the Wednesday as we knew things were moving on. All the while Stephen was sleeping a lot but then we’re having nice family time as well.

He never lost his sense of humour. On the Thursday Sam came into the bedroom to ask her dad if he wanted anything as she was going shopping, he said “yes, can you get me a new pancreas”. On the Friday night the BeeGees came on TV singing Stayin Alive, Stephen said “that sounds like a plan”.

On the Saturday morning, June 13th, Stephen and I jointly agreed it was time to go to the hospice. He was admitted at 1.30 in the afternoon and lost his battle ever so peacefully at 9am on Sunday morning. This was 20 weeks from diagnosis. Our last conversation was the same as we had every night. I said “thank god for Stephen” and he said “thank god for Julie”, we then kissed each other good night.

We had been married for thirty years and thirty three days. I am so blessed to have shared the love of such a wonderful and brave man, my hero.

September 2020