Wednesday, 21 August 2013
Picked up the narrow boat on Monday afternoon and have travelled up to Llangollen, where Graham and Pat joined us for a meal and today we have done a mega cruise from Llangollen down to Ellesmere. Just moored up a little way out of the town on some 48 hour moorings between two cattle pastures. Tea is on.
My blood pressure started to rise on Saturday and has been showing higher than my normal high. Left a message on the Prof's answerphone yesterday and his secretary called me back today. Well I had to work out she was the unknown number as she didn't leave a message. When I got hold of her she said she had left a message for me at home. She doesn't like to leave messages on mobiles as she might have got the wrong number, how does she know she got the right number for home? Anyway, upshot is, Prof says to take 10mg of amlodopine instead of 5mg and see how it goes until Friday and then let him know the result. That is much better than what his secretary suggested, which was to visit my GP, not easy from a narrow boat in Shropshire.
Today's picture is the view from the boat on the Pontcysyllte aqueduct. That grass is 126ft below. Great fun.
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Saturday, 17 August 2013
Came out to find that there was no one to do blood tests until 2:15, so another 15 minutes waiting. Ho hum.
Got home, packed some bags and waited for Ian to come and pick us up. Tea at Lauren and Ian's and then off to Wales. The Buckley Arms hotel was great but Porthmadog has been very wet today and the Bron Rhiw here in Criccieth seems very average.
We have tickets for The Welsh Highland Railway tomorrow, so it is an early start with breakfast at 8;00. I have to have my chemo drugs on an empty stomach an hour before eating, so I will be up popping pills at 6:45 am. Horrible for a Sunday.
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Tuesday, 13 August 2013
Been pretty good today as well. Got up about 7:00 to take the Pazopanib then went back to bed. Struggled to get going and finally emerged at 9:30ish. I have had a form from the DWP to keep claimimg my ISA benefit. Part of the form has to be completed by a healthcare professional, so I took it to the GP. They rang me and said they charge £15 to fill in the form. Ok, so that is no big deal for me as I have other sources of funding and am only getting my contributions based benefit. But if I was having to survive on the £71 a week the benefit pays me, £15 would be a substantial chunk of my weeks money. Why does a doctor charge me to do things? I have paid my NI all my working life, shouldn't I get something out of them? I am angry.
Popped over to see friends, who are visiting from Guernsey, they had bought me some lucky heather back from their trip to Skye. It will fill the gaps on the rockery a treat, lets hope it is super lucky too. Had a very open discussion with Martine about how long I have and funerals. Did me good.
Saturday, 10 August 2013
Tuesday, 6 August 2013
Don't know why I feel down, but I do. I am not looking forward to the new chemo, the list of side effects has scared me. The Prof pointed out on Friday that the side effects are no worse than those of Aspirin, but it still scares me. I can feel the tumour in my groin a lot more now than ever before and I am not sure if it is my imagination following the scan results last Friday or if its real, but I can feel it elsewhere too. I need to keep busy, when I am doing things I don't think about it. Driving is still good for me, it occupies my mind and leaves my sub-concious to process things. I am using my brain to see if I can send my white blood cells to fight the cancer cells, it has to be worth a try. Thinking about going onto a green juice diet, it seems like a hell of a lot of green vegetables and the advice says not to mix it with chemotherapy, so I need to talk to Dr Pratap about it on Friday.
Have an appointment with my GP on Thursday afternoon and with the Oncologists on Friday Morning. In between we are hoping to go to Bristol for the Baloon Fiesta Nightglow and Fireworks.
Just realised I haven't blogged since Friday! Sorry. The weekend was great. Saturday Sharon and I took 500Tie to Mallory park to watch the qualifying and a few races at The Classic Touring Car Club Classic Weekend. A trialing aquaintance was there racing his Ford Fiesta, and going very quickly. Sunday we went to Andy and Cheryl's for dinner and had a great time. I needed cheering up after Friday and motorsport and good friends did the job.
Friday, 2 August 2013
Been to see Prof Hassan today. He was running an hour late as usual. He had the scan results and they were not good news. As a result we decided to try the other chemo regime. This will be tablet based, take at home, so no more visits to the Brodey. Will call in one day next week to say thank you. The main side effect of the new chemo is raised blood pressure, mine is high already. The Prof says we can control it.
He also said they will monitor closely in the early stages. Sharon and I imagined daily visits to The Churchill, turns out his concept of close monitoring is every 2 weeks. So it looks like the blood pressure monitor will be pressed into service.
I am not feeling great about it all. Finding it really difficult to get motivated and I am uncertain how I will react to daily chemo, could be good, could be bad. The conversation with The Prof upset me and Sharon. Talking about how long the drugs might buy me and how quickly I could deteriorate if I refused them focuses the mind. Unfortunately it isn't a nice place to focus.
On a more cheerful note Lauren and Ian are home from their holiday and came round for tea. Had to take them both for a ride in 500Tie. Lauren wants a brake pedal on the passenger side and Ian wants to go on the insurance. :