It is supposed to be my week off. I am supposed to be able to get on with life and get ready for round 2. the past 24 hours have been evil.
We got down to Dorset on Sunday to catch Murray winnng and then went to Jess' 21st birthday party. Really pleasanr evening round the table eating and chatting. Got back to Frank's about 10:15 and I had atouch of indigestion. Not surprising, I had been eating and drinking and thought I would have to pay the penalty for an hour or so. Went to bed, by which time the indigestion was on discomfort level 8. You can't describe it as pain, it is duller, deeper and less specific than pain. Woke at 3:30 and had to transfer to a chair as my stomach muscles were cramping and the discomfort had risen to 9. Thrashed about for a couple of hours, walked up and down the hallway a bit, still really uncomfortable. Got back into bed, but it hurt.
Got up and Frank had done a cooked breakfast, at my request, so I forced it down, but it was uncomfortable. We went down to Hive Beach to catch some sun and sea. I drove and probably shouldn't have done. Every bump and turn hurt. We set off for home about 2:00 with Sharon driving. I had read the leaflet that came with the antibiotics and it warned of indigestion as a possible side effect. I reclined the seat and thrasshed about in discomfort. Rang the triage team from Salisbury and they said if it was the antibiotics it would be easier and quicker to see my GP and get them changed. Rang the GP and got a 5:10 appointment, the last. It was 3:20 and Salisbury is usually 2 hours from home. Sharonwent for it and we walked into the surgery at 5:09pm, well done girl. Then waited 20 minutes to see a Doctor. It was one I had seen before, and he is very helpful. Last time he broke the rules and took my blood so I could deliver it the path lab myself instead of having to wait until the next day. Today he was great, read through the chemo documentation and pointed out that one of the chemo drugs also has the side effect of indigestion, some days after being administered. He then rang the triage team to check that what he planned to prescribe would work with all the other drugs I am imbibing. The triage team were surprised it hadn't already been prescribed!
So home, Sharon off to Sainsburys' Pharmacy and 40 minutes later, another drug enters my system. It hasn't cured it, but it has knocked the edge off. Discomfort down to level 6. Have spent most of the evening curled up on the bed thrashing about. Lets hope the second dose tomorrow gets rid of it.
Monday, 8 July 2013
Sunday, 7 July 2013
Well what a weekend!
Saturday afternoon, had done a couple of jobs and sat on he sofa in front of Wimbledon and the GP qualifying. Nodded off. Woke up feeling very hot. Not surprising, it was a hot day. We had something to eat and I still felt hot and rough. Sharon convinced me to take my temperature. 38.1, not good. Sharon rang the oncology triage service, I wasn't worried, I was out of it. I was hoping I could pop across to The Horton, get some antibiotics and get home to bed. Triage said if I went to A+E at The Horton they would almost certainly admit me and I would probably be in all weekend. If I went to The Churchill they woulkd check my bloods, give me some antibiotics and send me home, unless I had become neutrepenic. Neutropenia is a possible side effect of chemotherapy. Basically the white blood cell count becomes so low that the body can not fight any infection and sceptisimia sets in very quickly. The chemo guidance all says you have about an hour from initial infection to intensive care.
Probably worth the drive to The Churchill then. They were fantastic, the duty doctor, Anna, did everything she could to get me through and home, but all her efforts were beaten by Pharmacy once again! I don't know why it is so difficult for a doctor to get drugs from a pharmacist. The penicillin I needed is available on the internet with 24 hour delivery. But Anna couldn't get it out of The Churchill and couldn't risk letting me go without it. So Sharon went home about 1:15am and I stayed the night. I then had to wait until 1:15 pm for Pharmacy to dispense some penicillin. Like I said, I can buy it on the internet with 24 hour delivery. Temperature had dropped back to normal by the morning, antibiotics were doing their job.
Probably worth the drive to The Churchill then. They were fantastic, the duty doctor, Anna, did everything she could to get me through and home, but all her efforts were beaten by Pharmacy once again! I don't know why it is so difficult for a doctor to get drugs from a pharmacist. The penicillin I needed is available on the internet with 24 hour delivery. But Anna couldn't get it out of The Churchill and couldn't risk letting me go without it. So Sharon went home about 1:15am and I stayed the night. I then had to wait until 1:15 pm for Pharmacy to dispense some penicillin. Like I said, I can buy it on the internet with 24 hour delivery. Temperature had dropped back to normal by the morning, antibiotics were doing their job.
We got out of The Churchill by 1:30pm and hit the A34, heading Dorset. Some people were surprised to hear I was going to Dorset, but it was important to me, important for Sharon and LIFE MUST GO ON! I have no idea how much life I have left, I am not about to put things on hold just because I have had a bit of a temperature. I am sure I will need this level of determination at some point in the future, so I am building it up now.
Also, I love driving and travelling. Even in the Suzuki with the A34 and A303 full of Sunday drivers, it was fun. The concentration required to drive well fills the conscious part of my brain. The unconscious seems to process all the other stuff that is going on. I always feel better after a drive. Feeling well enough to drive was a milestone in the first chemo regime. Luckily, so far this regime, I haven't fell so unwell I can't drive. Lets hope it stays like that. I really fancy a day in a Morgan 3 Wheeler.
Sent using BlackBerry® from Orange
Well what a weekend!
Saturday afternoon, had done a couple of jobs and sat on he sofa in front of Wimbledon and the GP qualifying. Nodded off. Woke up feeling very hot. Not surprising, it was a hot day. We had something to eat and I still felt hot and rough. Sharon convinced me to take my temperature. 38.1, not good. Sharon rang the oncology triage service, I wasn't worried, I was out of it. I was hoping I could pop across to The Horton, get some antibiotics and get home to bed. Triage said if I went to A+E at The Horton they would almost certainly admit me and I would probably be in all weekend. If I went to The Churchill they woulkd check my bloods, give me some antibiotics and send me home, unless I had become neutrepenic. Neutropenia is a possible side effect of chemotherapy. Basically the white blood cell count becomes so low that the body can not fight any infection and sceptisimia sets in very quickly. The chemo guidance all says you have about an hour from initial infection to intensive care.
Probably worth the drive to The Churchill then. They were fantastic, the duty doctor, Anna, did everything she could to get me through and home, but all her efforts were beaten by Pharmacy once again! I don't know why it is so difficult for a doctor to get drugs from a pharmacist. The penicillin I needed is available on the internet with 24 hour delivery. But Anna couldn't get it out of The Churchill and couldn't risk letting me go without it. So Sharon went home about 1:15am and I stayed the night. I then had to wait until 1:15 pm for Pharmacy to dispense some penicillin. Like I said, I can buy it on the internet with 24 hour delivery. Temperature had dropped back to normal by the morning, antibiotics were doing their job.
Probably worth the drive to The Churchill then. They were fantastic, the duty doctor, Anna, did everything she could to get me through and home, but all her efforts were beaten by Pharmacy once again! I don't know why it is so difficult for a doctor to get drugs from a pharmacist. The penicillin I needed is available on the internet with 24 hour delivery. But Anna couldn't get it out of The Churchill and couldn't risk letting me go without it. So Sharon went home about 1:15am and I stayed the night. I then had to wait until 1:15 pm for Pharmacy to dispense some penicillin. Like I said, I can buy it on the internet with 24 hour delivery. Temperature had dropped back to normal by the morning, antibiotics were doing their job.
We got out of The Churchill by 1:30pm and hit the A34, heading Dorset. Some people were surprised to hear I was going to Dorset, but it was important to me, important for Sharon and LIFE MUST GO ON! I have no idea how much life I have left, I am not about to put things on hold just because I have had a bit of a temperature. I am sure I will need this level of determination at some point in the future, so I am building it up now.
Also, I love driving and travelling. Even in the Suzuki with the A34 and A303 full of Sunday drivers, it was fun. The concentration required to drive well fills the conscious part of my brain. The unconscious seems to process all the other stuff that is going on. I always feel better after a drive. Feeling well enough to drive was a milestone in the first chemo regime. Luckily, so far this regime, I haven't fell so unwell I can't drive. Lets hope it stays like that. I really fancy a day in a Morgan 3 Wheeler.
Sent using BlackBerry® from Orange
Saturday, 6 July 2013
It's Summer
Right, no moaning it's too hot, no complaining about sun burn and no wingeing about the lack of rain for the garden. It is summer and I am enjoying the glorious weather. Feels so much nicer to have some warmth on my back. The sun is shining and I am smiling.
The second week of chemo has passed uneventfully, apart from the phone call I got about 11:00 am Friday morning from the Brodey Centre. They were expecting me at 10:00 am, but LIZ HAD WRITTEN IT DOWN AS 13:30 in my appointment book. Anyway, I walked straight over and they got on with it. Liz apologised. I knew I hadn't got it wrong, I don't get things like that wrong. I have also got all my appointments for the next cycle and have tried to get in touch with Dr Pratap to make sure the prescription is done early and I can collect it next Friday. It will be so much easier if I can get everything to go smoothly.
I have had a look at chemo dates and I will still be on chemo for the MGCC Autumn Trial and The MCC Edinburgh. But there is nothing in the regs says I can't compete whilst on chemo, so entries will go in for both. Andy is threatening to pick the Skoda up this weekend, once he has it in the workshop I can start building it, with everyone's assistance. So there are some September and October targets.
I had a good look round on the internet for a canal boat in August and have found plenty. So this week I think I will book something on The Llangollen for the week of 19th. Only 4 days, but that is long enough to do the whole canal, which includes a tunnel and The Pontcysyllte Aqueduct. We have done it before, but it is my favourite and has been part of my life's memories. I can remember stopping on the A5 to look at it as a small boy on trips to North Wales. I can remember stopping on the A5 to look at it as a young man taking my first MG to Snowdonia and I remember stopping to look at it in the Land Rover on Welsh laning trips. We went over it a few years ago when we did the Llangollen, it was as spectacular as I expected. Sitting on the stern of a narrow boat with nothing between you and the Dee Valley, 126ft below, is breathtaking. The fact that Telford built it in the early 1800s, before the internal combustion engine was invented, makes it even more magnificent.
Had a long phone chat with John Matchett, my old boss, today. He is in the JR recovering from an operation. He too has cancer and has a similar prognosis to me. We agreed we will both fight on whilst there is still a tomorrow. We also agreed that what we have had, hasn't been bad. So be thankful for what you have, when you have it, live everyday to the fullest you can and always look forward to tomorrow.
The second week of chemo has passed uneventfully, apart from the phone call I got about 11:00 am Friday morning from the Brodey Centre. They were expecting me at 10:00 am, but LIZ HAD WRITTEN IT DOWN AS 13:30 in my appointment book. Anyway, I walked straight over and they got on with it. Liz apologised. I knew I hadn't got it wrong, I don't get things like that wrong. I have also got all my appointments for the next cycle and have tried to get in touch with Dr Pratap to make sure the prescription is done early and I can collect it next Friday. It will be so much easier if I can get everything to go smoothly.
I have had a look at chemo dates and I will still be on chemo for the MGCC Autumn Trial and The MCC Edinburgh. But there is nothing in the regs says I can't compete whilst on chemo, so entries will go in for both. Andy is threatening to pick the Skoda up this weekend, once he has it in the workshop I can start building it, with everyone's assistance. So there are some September and October targets.
I had a good look round on the internet for a canal boat in August and have found plenty. So this week I think I will book something on The Llangollen for the week of 19th. Only 4 days, but that is long enough to do the whole canal, which includes a tunnel and The Pontcysyllte Aqueduct. We have done it before, but it is my favourite and has been part of my life's memories. I can remember stopping on the A5 to look at it as a small boy on trips to North Wales. I can remember stopping on the A5 to look at it as a young man taking my first MG to Snowdonia and I remember stopping to look at it in the Land Rover on Welsh laning trips. We went over it a few years ago when we did the Llangollen, it was as spectacular as I expected. Sitting on the stern of a narrow boat with nothing between you and the Dee Valley, 126ft below, is breathtaking. The fact that Telford built it in the early 1800s, before the internal combustion engine was invented, makes it even more magnificent.
Had a long phone chat with John Matchett, my old boss, today. He is in the JR recovering from an operation. He too has cancer and has a similar prognosis to me. We agreed we will both fight on whilst there is still a tomorrow. We also agreed that what we have had, hasn't been bad. So be thankful for what you have, when you have it, live everyday to the fullest you can and always look forward to tomorrow.
Thursday, 4 July 2013
Nile Rodgers
I have just watched Nile Rodgers from Glastonbury whilst imbibing my chemotherapy. Who would have thought, in 1976, when I was an angry young man, that the technology would exist for me to watch such a performance, on a wireless device I held in my hand. I remember discovering disco music. I had been bought up on rock and roll, prog rock and most recently punk. We were sat in Ollie Bennet's front room in De Freville Avenue, someone had a copy of an album by The Commodores, we played Brickhouse continually for nearly an hour. That was the start of a quest of discovery, possibly culminatiing in Chic, Le Freak. It remains one of my all time favourite pieces of music.
So whilst I bopped along to the Glastonbury performance I googled Nile Rodgers. I know he is on tour and I thought there might be the remote chance of a performance that isn't sold out. What was the first thing I found, this. So he has cancer, he writes a blog. Looks like he could well be on a final tour. Look at his hits, in his own name, for others and as a producer. Look at the film soundtrack and video game credits. What a man. The Glastonbury performance has a rhythm section like a steam train, brass beyond belief and such a great variety of great tunes.
So whilst I bopped along to the Glastonbury performance I googled Nile Rodgers. I know he is on tour and I thought there might be the remote chance of a performance that isn't sold out. What was the first thing I found, this. So he has cancer, he writes a blog. Looks like he could well be on a final tour. Look at his hits, in his own name, for others and as a producer. Look at the film soundtrack and video game credits. What a man. The Glastonbury performance has a rhythm section like a steam train, brass beyond belief and such a great variety of great tunes.
Wednesday, 3 July 2013
Wednesday Week2
Week 1 slayed me. I slept at some point every day. This week with just the one drug is easier. Kept going all day yesterday, thanks to 3 cups of caffeinated coffee I suspect. Struggled to sleep last night. Back to decaff again today, hopefully that will give a better nights sleep.
Got through The Brodey Centre in 90 minutes this morning. I was supposed to be in at 1:00 pm, they rang me yesterday and asked if I could get in for 8:30am. It was a struggle poking a leg out of bed at 7:25, but I did it, I was home byu 10:00 and I feel pretty good considering. It is bright and sunny here now so I think I might take a ride out at lunchtime and catch some fresh air.
I have booked a Caterham 7 for next week to give Ian his birthday treat. It is a shame he won't be able to drive, insurance companies! The hospital say I will be fine by next week, the poisons will clear over the weekend and I should have a fun week. Only on the poison this week, no steroids, no anti-emittics, no pain killers. Feeling good.
Sharon found some pictures from our recent escapades, I like these ones:
Got through The Brodey Centre in 90 minutes this morning. I was supposed to be in at 1:00 pm, they rang me yesterday and asked if I could get in for 8:30am. It was a struggle poking a leg out of bed at 7:25, but I did it, I was home byu 10:00 and I feel pretty good considering. It is bright and sunny here now so I think I might take a ride out at lunchtime and catch some fresh air.
I have booked a Caterham 7 for next week to give Ian his birthday treat. It is a shame he won't be able to drive, insurance companies! The hospital say I will be fine by next week, the poisons will clear over the weekend and I should have a fun week. Only on the poison this week, no steroids, no anti-emittics, no pain killers. Feeling good.
Sharon found some pictures from our recent escapades, I like these ones:
Monday, 1 July 2013
It's a conspiracy
Chemo was swift and efficient this morning. Got the drugs in quick and the bloodtests underway. I would be having very serious thoughts about the value of it, if I had to go to Oxford everyday. Thank heaven for The Brodie Centre.
Then the worlds of hospitality and finance started to conspire against me. All I wanted wa a nice hotel, for a couple of nights, near or in Brighton. Tripadvisor turned some up, all full, Visitbrighton found some, over £500 for 2 rooms for 2 nights, several small b&bs were answerphones, Premier Inns were all full or very expensive at Gatwick. So, off to Travelodge. Found what we needed within a reasonable price, made the booking, credit card refused. Call from credit card people telling me there is too much fraud from this website so I needed to clear the payment. Cleared, tried to rebook, no rooms! Called Travelodge, confirmed no rooms as system was holding them waiting for my payment to clear, wait a while, call back. Rang credit card company to ask them why I can't spend any money and moan about possibly losing the rooms. Their answer was a polite "tough shit we are protecting you". They protected me with the initial website, they protected me with their verification software and they protected me by phone 3 times. Shame they don't protect me from cancer.
Anyway, rant over, rooms booked, Bluebell line here we come. Thanks Snook. I need targetsand prizes to get me through this. Have set some motorsport targets for September and October, need to create a chemo schedule to see how it fits. Must sort out some fun for August.
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