Got up very tired at 9.45 am to take my tablets and went to bed again for another hour. After brunch, Janice, Dominic and Aleksandra went to Looe. I stayed behind and did some work on the Flora and Heather painting for Colin and Caroline, who were planning to visit us on Sunday. I do have aches pains in my lower back and kidneys that although troublesome I decided not to take any extra morphine. Unfortunately, the pain got worse and I took 20 mg of Oramorph after lunch. There is no doubt that I am loosing my strength gradually. I get out of breath easily and have to stop for a rest when walking with my crutches up a slight incline. I also find going up the stairs with a shopping bag after we have been to the supermarket hard going. The days of strutting my stuff on the stud farm are definitely distant memories never to return. As I keep a detailed diary and keep copies of all my blood test results I spent some time listing relevant treatment milestones and events to see if there was something that could have been done that might have changed my situation. In the evening we played a most enjoyable game of nomination whist, which Dominic won. During the game I had two large whiskey and cokes, which was forgetful of me because you are not supposed to mix morphine and alcohol. However, I suffered no ill effects from the incompatible mixture. Before going to bed at 1.30 am I took another 20 mg of Oramorph.

I woke feeling tired as I did not sleep very well owing to many things going on in my head. For the second day running I did not need to use any Oramorph for pain relief. At my 10 am foot appointment at Liskeard, Pipa told me that my ulcer and blister was not infected and that I did not need any antibiotics. It seems that the blister problem was caused by the new insole rubbing on the side of the ulcer. My ulcer was dressed and the next appointment was made for Thursday 2^nd September at 1.30 pm. The afternoon appointment was made so that I could continue to my 2.30 pm appointment at Derriford hospital for my bone strengthening drip. At 4.30 pm I attended the Derriford PSG meeting for a presentation about erectile dysfunction. The meeting was well attended and the presentation very good. It appeared that around 65% of men who have a Radical Prostatectomy or Radical Radiotherapy suffer from erectile dysfunction compared with around 25% with Brachytherapy. However, the oral tablets such as Viagra are very successful at rectifying the problem. Unfortunately, the male hormone testosterone is needed for an erection which means that the vast majority of men on hormone therapy cannot get an erection. Interestingly, men with prostate cancer represent around 30% of patients with erectile dysfunction problems with the remainder being men with diabetes, heart and other health problems. After the meeting, I asked Colin Street, the new leader of the Steering Group (SG), whether the SG would be supporting the request from the Graham Fulford charity for support with PSA testing in Plymouth, which was scheduled for November. He said it was on the agenda for the SG meeting next week. Dominic and Aleksandra arrived just before midnight for their stay with us over the bank holiday. We stayed up until 2.30 am drinking and chatting.

A good nights sleep and I did not wake until 7.30. No pains and did not need any Oramorph. I called Dr Daniel’s secretary to chase a reply to my e-mail. She told me he is on leave until Tuesday next week, but she promised to mention my request if she happened to talk to him. Dr Simon Fullalove called about the swab result which showed I had an infection in my ulcer. He suggested that I have a course of antibiotics. During the call I asked if he would request Abiraterone from the manufacturer. He said he could not because he was a GP and not a cancer specialist. However, he said he would find some specialist who would and if needed request another second opinion from Professor Alan Horwich at the Royal Marsden, who I saw last December. I had a feeling that I would be requesting the services of Simon as I was starting to lose faith in Dr Daniel. I chased the complaints department at Derriford to see when I could expect a response to my complaint now that the promised response date had been exceeded. In the evening I had some aches in my neck so I rubbed in some Ibugel.

At 4 am I woke with severe lower back pain. Could not get to sleep and took 1 gm of paracetamol. This had no affect and at 7 am the pain was getting worse so I took 20 gm of Oramorph (liquid morphine). I managed to get a couple of house of undisturbed sleep but got up around 9.30. I had not received a reply from Dr Daniel to my e-mail. I took more Oramorph around noon but did not take any more as the pain seemed to have gone away. It was not a nice day and I worried about things to come. When I went to bed, I put some Oramorph beside my bed just in cases I needed it during the night.

Our lunch date with Nick Love for tomorrow was cancelled by Nick. I had my foot appointment in Liskeard at 10.30 am. A blister had formed and it burst when Pipa was cleaning it spraying her with my blood. She took a swab to see if it was infected. The blister and ulcer was dressed and my next appointment set for 10 am on Thursday. When I got home I sent the NSIG input documents to the UKNSC. I also sent copies to the NSIG team and the Prostate Cancer Support Federation (PCSF) Committee. Afterwards I finished the single portrait of Zofia and cancelled my art tuition with Richard Barry as I had too many things I needed to do. I sent a high priority e-mail to Dr Francis Daniel asking him directly if he would contact Cougar for the drug Abiraterone using the Doctor/Patient relationship.

Finished the picture of Flora, Heather and Zofia and I was very pleased with the result. At 7 pm we went to the McMillan charity BBQ at the Beach Café in Seaton. The weather was very bad and there were very few seats undercover from the torrential rain. We bought tickets in the raffle and the treasure hunt. The hog roast was very good. We bid in the auction for one of Richards Barry’s signed print of the original oil painting we had already bought. We also bid for one or two other interesting lots. We were unsuccessful in the raffle, the treasure hunt and the auction. This said, it was a very enjoyable and worthwhile evening.

Uncomfortable night waking twice with severe pains in my lower abdomen, which I suspected were probably caused by wind and/or a blockage. We both got up late very tired and with hangovers. Just before lunch we went to West Looe to pick up the PT Cruiser. When I got back I had an hours sleep. In the afternoon I did some painting on the picture of Flora, Heather and Zofia. I was pleased with the result. Richard Barry, my art tutor, rang saying that he had managed to get two tickets for the McMillan charity BBQ at the Seaton Beach Café, which was in memory of a young local woman who died of breast cancer last April. I drove down to the Café and bought the tickets.

Janice and I our appointment with Dr Francis Daniel at 9.15 am. Because my underlying diabetes problem Dr Daniel would not recommend chemotherapy using Taxotere as it would be too toxic and cause more harm than good, especially as the average life expectancy increase was only 2 months. Also, reducing the Taxotere does by 50% would be less toxic but of very little real life expectancy benefit, only a psychological benefit. The reason why my PSA level had seemed to level out is that some of the cancer cells have evolved so much from their mother prostate cells that they no longer secrete PSA. My raised alkaline phosphatase level was caused by my bone metastases and not cancer spreading elsewhere. With regard to Abiraterone, Dr Daniel felt it was of no significant benefit because if it was it would have been licensed by NICE already. Although I requested the use of the drug, he did not offer to contact the manufacturer under the doctor patient relationship. Also, the use of oestrogen was not advised as diabetics have narrowing of the arteries and would be at high risk from thrombosis. He went on to say that younger healthy men when having oestrogen treatment are given blood thinning drugs. Basically, Dr Daniel said that there is nothing he can do as my cancer has now become totally hormone intolerant. When I asked about life expectancy he said between 6 and 12 months after the cancer becomes hormone intolerant. This was the same prognosis he gave last December. I thought to myself this is the last stage and all I could benefit from now is palliative care such as pain relief. Dr Daniel also mentioned that it is mainly the side effects of the cancer (not the bone metastasises) that causes death, such as renal failure, spine collapse, organ failure, etc. However, Dr Daniel did arrange the use of the drug Pamindrinate (something like that) to strengthen the bones and provide some pain relief. Also, Dr Daniel suggested that I should accept that I have incurable cancer and not get frustrated or annoyed as there was nothing I could do about it. The appointment lasted around 45 minutes. Afterwards, Janice and I talked about what it all meant but unfortunately we did not reach any real conclusion as there were too many unknowns. This said, I could still go ahead with Chemotherapy accepting the high risks and/or I could ask Dr Fullalove, my GP, to request Abiraterone from the manufacturer. Whatever my decisions, I definitely need to prioritise what I want to achieve and do in the time I have remaining. I received an e-mail from Hugh Gunn, Treasure of the Prostate Cancer Support Federation (PCSF) staying that the PCSF at yesterday’s meeting would be recommending PSA screening to the UKNSC as part of the consultation response. At 7 pm Janice and I went to the Hannafore Point Hotel in West Looe for the Abba tribute evening. I drove the PT Cruiser which we planned to leave overnight and collect in the morning so that we could both drink. Because of the days events it was touch and go whether we went, but we were glad we did because we had a fantastic evening, part of which was winning a four course dinner for two at Barclay House in the raffle. We drank far too much and because of the days events we had some tearful moments when dancing together, hopefully unseen by others. We also enjoyed the company of Jimmy and Sue. At midnight we get a taxi back to Downderry and when we got home we watched the first episode of Dexter series 4. At 1.30 am we went to bed.

When I got up I put the plaster shoe on my ulcerated foot in the hope it would heal in a few days. In the morning post I received at card from my very good friend Heike, with a letter written inside. Heike likes to do things the old fashioned way, which is far more meaningful and appreciated than e-mails. After lunch Janice and I collected my blood test results from the Downderry surgery. Based on my previous PSA result of 85 I was expecting it to double to around 160, but I was wrong. My PSA had risen but only by 3 to 88. Although my blood count at 11.7 was just below the lower limit it has been this level for several months and was of no concern. All my liver function tests were normal except one, the serum alkaline phosphatase, which was nearly three times the maximum range at 389. After searching the internet to find out what could cause this elevation I was worried that my cancer had spread elsewhere. In the evening I printed out my letter to Dr Francis Daniel for my appointment with him tomorrow at 9 am. Richard Barry, my art tutor, left me a message that the life drawing session on Saturday had been cancelled but the session on 4^th September was confirmed.

In the morning I finished the grisailles for the painting of Flora and Heather together and the smaller painting of Zofia. Between 5 and 7 pm I had my art tuition from Richard Barry. In the evening whilst resting with my feet up, Janice noticed that my foot ulcer had started to bleed. On inspection, the ulcer had opened up, which was probably caused by walking on the beach yesterday. This was not good news as the ulcer had only been healed for around two weeks.