The illness

Created by Richard 12 years ago
We found out about Petra's illness on the 20th October 2010. Multiple lesions in the liver was how it was put. We both knew instantly that Petra was going to die. I had to go to Cyprus to speak at a conference but obviously I did not want to go. Petra said I had to. I left and she spent the next few days on her own. The kids were with grandparents in Glossop. On the Sunday morning, she went to the Grove Church. We looked into ever possibility as the slow process of diagnosis took place. We were told that she had cholangiocarcinoma and that the prognosis was very bad. Cholangiocarcinoma is a cancer of the bile duct which links the liver with the small intestine. It is very rare and very difficult to treat. There is one standard treatment which often proves to be ineffective. Petra sat patiently for whole days in the Nightingale Ward of the Bexley Wing as they dripped the chemotherapy drugs into her. In February we were told by our consultant, who we nicknamed 'Actually' that the treatment had not worked and there was actually no second line treatment. Both Petra and I developed a very low opinion of the NHS, not because they could not cure her but because of the impersonal and disinterested way that they went about not curing her. Actually. When she was first diagnosed, a friend had told her about macrobiotics and how that had helped some people slow down and even reverse the progress of cancer. Petra vowed to try it and showed incredible discipline to stick rigidly to the diet. In April, we went to America to attend a course at the Kushi Institute to learn more about the macrobiotic diet. In the end, it did not help Petra to beat the disease but it gave her hope and made life more bearable while she was on the diet. I did it strictly for six weeks and felt wonderful. I lost weight and had loads more energy. Part of the major problem with cholangiocarcinoma is that it presents hardly any symptoms. Petra knew something was wrong when she could feel the tumour in the left lobe of her liver pushing into the wall of her abdomen. By this stage, it was roughly 16 cm in diameter. She did not look ill nor did she feel ill. She looked relatively healthy until well into the summer of 2011. We looked at trial programmes at St James and the Royal Marsden in London. There was talk of a special form of radiotherapy but that, it was felt was either too expensive or too dangerous depending on which consultant you spoke to. By the end of August, there were other symptoms that were starting to cause problems. Ascites, which is the build up of fluid in the abdominal cavity started to cause a problem when we were in Klatovy. Once we got back to Leeds, Petra had to go into St James to have it drained. They started a new course of chemotherapy but in the end she was only able to have one dose. In the middle of September, we both started with chest infections. I fought mine off but as Petra's immune system was compromised, hers developed into pneumonia. She had to spend almost two weeks in St James's on strong painkillers and antibiotics. The ascites was getting worse and though they could drain the fluid this led to a drop in her blood pressure which could only could be raised by giving her fluids intravenously. This of course made the ascites worse. There was no answer to this vicious circle. She had problems communicating and was clearly very ill. There had been talk of having her nursed at home by me round the clock with help from the district nurse but it was decided that a hospice was the best option. The journey to Wheatfields was the saddest of our lives together. The ambulance took us through the city centre and past the university, where I had studied and Petra had worked. We saw the church where we got married and past all the pubs where we had spent so many evenings. Our favourite restaurant, the Caliente Cafe was close to the hospice and the two flats in Headingley where we had lived were a stone's throw away. We both cried all the way. The expectation of the hospice was that it would be a couple of days but things did not work out as expected. For some reason, Petra picked up and was soon holding court to up to eight visitors a day. She started to eat properly and, with the collaboration of friends, decorated the room in her own unique style. The hospice even arranged a shopping trip for her, Liz and our daughter Toni. They went to the White Rose Centre and bought Toni a bear for her birthday. Petra recorded a message for the squeezy thing in bear's paw in which she said, in Czech, 'Good morning sunshine, I love you. Good night my darling, I love you.' The end started to come at the end of October. Petra was able to attend Toni's birthday party at Ralph Thoresby school but was clearly very ill. She could see not see visitors for very long and was now on very strong painkillers. On Wednesday 2nd November, they had to start giving her strong sedation. On the evening of the 3rd November, our daughters actual birthday, close family and friends gathered in her room for Toni to open her presents. Petra was heavily sedated but was squeezing a soft toy to show that she was aware of what was happening. I took the children home to put them to bed while Liz and Dawn sat with Petra. Around 8.30, I got a call from the hospice asking me to come at once. When I got there, I found Liz and Dawn still sat in the room. I then sat quietly with Petra on my own but she had died before I got there.