Pat was diagnosed with inoperable pancreatic cancer in 2010.
Pat’s husband Trevor tells his story
On 5th March, 2012, my wife Pat died of pancreatic cancer. Pat had been the love of my life for 36 years and the focus of everything that I had done during that period. We met when I was 35 and she 37, and had both been previously married, she had one daughter Lauren who was 16 when we got together, and I didn’t have any children of my own.
Just about two years after we were married we discovered that Pat had thyroid cancer, and underwent two unpleasant operations in six weeks, and then some radio therapy treatment. The good news was that the operations and the treatment were successful and we went on to lead a normal and happy life for over thirty years.
Towards the end of 2010 Pat was feeling under the weather as we were about to go on a trip to France for three days, and the Doctor advised against going saying it was probably a virus. Soon afterwards she started complaining of pains in her upper back, and would rub her back against a door pillar. Then she started being sick in the night and was prescribed anti-sickness drugs by her Doctor. The sickness continued and the doctor sent her for an X-ray and ultrasound test. This showed nothing and due to the bouts of sickness he arranged for her to have a CT scan, which was necessarily a few weeks ahead and the sickness continued. At this time unfortunately our doctor himself went off sick. Whilst waiting for the date of the CT scan to arrive the sickness worsened and further drugs were prescribed but to no effect. Whilst I was making efforts to get Pat admitted to hospital I read an article in the Daily Telegraph by Ali Stunt, and her own experience of pancreatic cancer, and it immediately rang alarm bells.
She was describing what we were experiencing.
Once admitted to St. Richard’s Hospital in Chichester the CT scan confirmed our worst fears. Not only Pancreatic Cancer, but inoperable. Told on that day that it was terminal and that no hope could be offered it was effectively being handed a death sentence. Being told that you have cancer is bad enough, but knowing that you have pancreatic cancer is about as bad as it gets. Pat took this awful news with extraordinary resolve, and seemed to be far more concerned for me and Lauren than for herself.
Pat was as I have said, the love of my life. She was not only beautiful but a lovely person too. She was kind, thoughtful, generous, loving, empathetic, cheerful and smiley. She made friends wherever she went, many from long before I knew her, who are friends still. We did most things together and we had great time.
Once diagnosed she had to have a gastric by-pass operation, which was completed successfully, and then there had to be a wait of six weeks before any treatment could begin.
Our first visit to the oncologist was what could be described as mixed. The consultant was there with the GI Nurse specialist, both were very pleasant and sympathetic in their manner. It was confirmed that Pat’s condition was terminal and that the average survival time was about 4 to 6 months, but that there were things that they could do. So what did this mean? We were told that she could have intravenous chemotherapy for 7 or 8 weeks. We asked what would be the efficacy of such treatment and what would be the likely side effects. We were informed that it could perhaps give her an additional 8 weeks of time. Not a particularly attractive equation. As to side effects they were said to be not predictable but generally not too bad with this drug, different people respond in varying ways. We asked if any treatment could be delayed and be started at a later date and were told this it was not an option. We were, also, told that treatment could be started but if it proved too hard or distressing she could stop at any time. We were advised to take a few days to decide what to do and so we went home.
Such a situation is very difficult to handle. On the one hand you are told that you are going to die and that outcome cannot be changed, but that the time scale maybe can be altered. You are aware that for the time scale to be altered to your advantage, it may be very uncomfortable to achieve this perceived benefit.
I think that at this stage Pat was thinking of saying that she did not want any treatment, and I fully understood her position. Lauren and I both said that the decision had to be hers and that whatever she decided we would support her decision. I said to her that if she did not try the treatment she may regret her decision at a later time, but that if she did decide to start she could stop if it was found to be too difficult. Lauren was of similar mind and after a few days Pat said that she would give it a go, and so started the next stage of our journey through this difficult time.
The treatment required a blood test one day at St. Richard’s Hospital in Chichester followed by chemotherapy at Queen Alexandra’s Hospital in Portsmouth the following day. This continued for seven weeks and then there was another CT scan. This showed that the treatment had not had the desired effect, which resulted in a change to chemotherapy in tablet form. This meant that we did not have to travel to Portsmouth each week which was a relief, although visits to the oncologist at Chichester continued. The side effects were not too bad and Pat carried on much as normal although tiredness was-an issue. She continued with the capecitabine for about 18 weeks and then her feet started to break up, and were getting very sore, and as a result she was advised of stop taking the tablets.
In July she had a nasty bout of jaundice, she was very yellow and had dreadful itching, which required time in hospital for a stent to be fitted, this was successful and led to a period of relative normality. Pat was able to do some gardening, her favourite pastime. In August much to our surprise and delight we were told that she was in remission. The capecitabine had been effective. At this point our lives returned to relative normality and we continued to operate much as we had done previously. We even dared to hope that she may survive for a longer period than our original thoughts allowed us to dare to hope for. We went out to meet friends, visited relations and lived a normal existence. In October we went to Porlock in Somerset to spend a few days at a favourite hotel and we had a good time, although her appetite by this time was not so good.
During the whole of this period Pat had been receiving massage and acupuncture from a lovely Iranian lady named Zohreh, who used to come to our house each week. I am convinced that this helped Pat to survive as long as she did, whether in itself efficacious or psychological in its effect I don’t know, but if it works don’t knock it.
Come November things started to go downhill, weight loss accelerated, appetite became worse and jaundice returned. A
further spell in hospital was required to replace the stent that had become blocked. Although much more risky than the first time, the stent was successfully fitted. Following her hospital stay she spent about ten days in St. Wilfrid’s Hospice in Chichester. Here she was cared for wonderfully well and returned home a couple of days before Christmas, which was spent with Lauren, her husband Nic, and our two beautiful granddaughters, Molly and Lottie. We had as good a time as possible in the circumstances and I am hugely grateful that we were able to do it.
After Christmas we were still able to go out from time to time to meet friends for lunch and, of course, further trips to the hospital. Pat would come down for breakfast and then go back to bed until late morning. In the evenings she would go to bed about 8.30 or 9 o’clock and I would read to her for about an hour. We managed to get through two of Alan Bennett’s books and one by the Dowager Duchess of Devonshire.
By this time Pat’s care was supervised by Macmillan nurses from Midhurst, and a clinical nurse specialist would visit every couple of weeks to see how things were going on.
Things were now on a downward path, and although Pat was still amazingly managing this awful situation, for two weekends in a row I had to call out the emergency Doctor. We decided that, if possible, she would like to go back to the Hospice. We experienced a little difficulty in achieving that, but without going into the reasons, we finally achieved our objective. I wish to point out that the Hospice had been helpful throughout.
It was agreed that Pat was to be admitted to St. Wilfrid’s Hospice in Chichester on 28th February. Even at this stage, she was amazing, two female paramedics on the ambulance went to the bedroom, and when it was suggested that they bring in a chair to carry her to the ambulance, she said “No”, and walked down the stairs and into the ambulance. The ambulance left and I am sure that although we had not mentioned it, I believe that Pat knew that she was leaving our lovely home for the last time.
I followed on a few minutes later and when I arrived at the hospice she was already in a room and being cared for by the lovely nurses and other staff.
I think that it was the following day that Lauren came to stay with me, and we went to the hospice together. Whilst we were visiting we were asked to speak to the Medical Director who proceeded to tell us that Pat was very ill indeed and that we should expect the worst. I suppose that this was not entirely a surprise, although when I had started to arrange for her to go back to the hospice it was for a bit of respite care.
Over the following days Lauren and I visited, and a few very close friends visited too. Pat was still being extraordinary and trying to care for her friends, and the nurses, and of course Lauren and me. Towards the end of the week Nic, Pat’ son-in-law, and Lottie her granddaughter visited, and needless to say Pat was still utterly charming with them, although clearly very ill indeed.
On Saturday before leaving for home, I asked one of her nurses if she thought that I should stay with Pat all night, the answer to which was “No I think that she will be alright”.
On Sunday I asked the same question and the answer was different, “Maybe”. I stayed and sat in a reclining chair next to the bed and held her hand all night. My beautiful Pat died at quarter to seven in the morning.
I am so pleased that I decided to stay and leaving later to go home to try to get some sleep was incredibly hard, leaving her behind. Driving home was one of the hardest things that I have ever done, and Lauren had to do the same alone in her car. This was the start of a whole series of hard things that needless to stay are still occurring.
I have lost the most important person in my life and I am hurting like hell. However, I have to say that all of the nurses and Doctors, specialists and surgeons were excellent, even when we had to make a hurried visit to Queen Alexandra’s Hospital when Pat had a bout of cellulitis.
During the period of Pat’s illness Ali Stunt was also very helpful and spoke to us both on the phone and answered some questions for us.
Looking back on a very hard time I have to say that I consider it to have been a privilege to have cared for Pat. I have been shown wonderful kindness from relations, friends and acquaintances and am learning to live with my new and unwelcome situation.
I am now doing some volunteer time for Pancreatic Cancer Action, as I live not far from their base, and I am setting up a Tribute Fund in Pat’s name, to raise funds to help other people with this awful disease.