Wednesday, 21 August 2013

On The Cut

We had a great weekend in North Wales, rode the Welsh Highland Railway, ate well and generally had a good time.

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

Welsh Excursion

Saw Prof Hassan on Friday. He was only 40 minutes late. Very brief appointment, he looked through my blood pressure numbers, told me all the side effects to watch out for (including spontaneous bleeding) and said if I have any of them to call straight away. Other than that, next appointment is 13th September.
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

New Regime still seems good

Drove down to Dorset on Sunday.  Had 90 minutes sleep when I got there, but I did that sometimes before I had cancer and was on chemo.  Good couple of days down there, saw the sea, had a drive round the fantastic countryside in my classic car and had a reasonable journey home on Monday.

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

New Chemo, great day

video 

Had a great day today.  I have been at On Your Marks.  it is a charity do sponsored by Asda.  Andy and Dan were there with their rally cars giving people rides in return for a charity donation.  I went as Service Crew.  I got a ride with both of them too.  Great fun.  Had a walk round too and saw the air display.  Went in 500Tie, which made it even more fun.

I was up early, not to go to Bruntingthorpe, but because I have to have my latest chemo on an empty stomach an hour before food.  The latest regime is Pazopanib  which comes in tablet form and I can take at home.  I have had no side effects today, I was very cautious about going to Bruntingthorpe on the day I started a new chemo regime but, after a restless night thinking about it, I am glad I did.  I suppose it could have been very different, if you look at the side effects.   I am really hoping this lot works.  I am formalising 'using my brain to heal myself' with a Betty Shine Healing Room meditation thingy, also need to look out the book Aud and Josh recommended, think it was called The Secret, by Rhonda something, it will be on facebook.


Off to Dorset for a couple of days in the morning to see Frank, hoping to take 500Tie there as well.  I think I have already done more miles in her than she did in the last 3 years. 

Tuesday, 6 August 2013

Its been a good day, but I am a bit down.

It's been a good day today, drove over to Oldbury to get some bits for 500Tie.  They had everything I needed except a headlight switch, the current one works most of the time, but I can guarantee it will fail when it is most needed.

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

Churchill Time

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. :