May I first start with some bad news. My Mum, who was diagnosed with Alzheimer’s last year, unfortunately died. She had been very poorly for the past 3 months. Her cremation, in Yorkshire, was a lovely opportunity to celebrate her life and the weather didn’t let us down. My brother and I intend to take her ashes to Whitby where she had some happy times with my late father.
Can I also say a huge thank you to everyone who has added likes and comments to my last blog post. It is such a lift that people have taken the time not only to read my blog but have also found it useful. Thank you all.
It’s also been a while since my last update. No excuses just a lazy arse.
My scans were very confusing. The consultant I was under gave me conflicting information. According to him the tumours in my liver had grown, we were looking at different chemo and he was making noises about Radio Frequency ablation. Not the most uplifting conversation I can remember having. It did cause me and my wife a great deal of stress. My consultant seemed to be gleaning information by reviewing the scans without consulting the radiographers report. However I was due to have my current chemo 2 days later so we decided to continue with this whilst looking at other options.
Fortunately I met with my Macmillan nurse Laura who gave us a completely different picture. At the MDT meeting that she had attended it was noted that there had been a small growth in the 2 main tumours in my liver but nothing to be overly concerned with. As I had spent the previous 5 months having chemo sessions cancelled due to what seemed to be constant infections it was no wonder I had experienced a slight increase. It was decided at the MDT meeting to carry on with my current chemo (Irinotecan and Capecitabine). I was also asked if I wanted to change consultants. I had lost all faith in my consultant and agreed to change. My first meeting with her went extremely well and the report that she wrote to my GP was comprehensive and upbeat.
Laura has been a great help. She referred me to the pain clinic at my local hospice who have been able to give me many more options for pain relief that hadn’t been considered by the pain clinic at my local hospital. I have been prescribed a slow release morphine drug that keeps the pain during the day at bay. I tend to have more issues with pain at night and when trying to sleep.
I’ve always been a bit of a cynic and have started a course of acupuncture. Again provided through the hospice. I have to say that although I’ve only had 3 sessions it has not affected my pain but I, and a few others, have noticed that my mood has definitely improved.
I cannot praise my local hospice enough. Always welcoming they run a series of courses such as dealing with anxiety, increasing physical activity and advanced care planning. I’ve recently started a course in seated Tai Chi. It must look hilarious watching from outside.
I’ve finally bit the bullet and decided that it would be impossible for me to return to work. After much form filling and questions, I have retired from the council. This gives me access to my local government pension 5 years early (I should have retired at 65). It won’t be a lot but every little helps. I will certainly miss work. Even though I’ve only been there a relatively short time I will miss my work colleagues plus the actual work I did. Although I spent over 30 years in IT the last 3 years have given me more job satisfaction than I could ever have imagined.
I’ve recently returned from my second music festival of the year. I camped on both occasions and thoroughly enjoyed myself. It was hard work on occasions but worthwhile. I don’t intend to let my lack of mobility or my illness to stop me from doing anything.
So onwards and upwards. I’ll try to update the blog a bit more often with anything interesting. I’ll let you know how retirement goes to. I’ve got the same issues but I’ll have loads more time to ponder over them. I’m off to a beer festival at the weekend with some friends so I hope you all have a great bank holiday weekend. It’s the last bank holiday before Christmas.
You have been warned.
Take care
Pete
