Wednesday 31 July 2013

Been and gone and done it

Well, I did it.  I bought a sports car.  After much indecisiveness I decided I was clean of steroids, sound of mind and had found a good one.  The ebay seller had refused my offer when I went to look on Sunday, but he rang me Monday evening and said he had been thinking.  The rest is history.  

I now own a gorgeous 1978 MGBGT. Has it cheered me up?  You bet.  Will it continue to keep me happy?  As long as I can drive it, it will.   Been out this evening and dusk in a British legend is so enjoyable.  It has that sports car smell, it drives beautifully, it sounds fabulous, it makes me grin.

Monday 29 July 2013

PET Scan

I have been for a PET scan today.  The results were conclusive, I don't have any Pets.  We havent had any since the dog died.

No seriously, the PET scan went smoothly.  I am amazed at how relaxed I am about them and hospitals in general now.  I suppose it is the exposure that has numbed me.  I remember my first PET scan last year.  I was apprehensive about being injected with radio active glucose, they struggled to find a vein and I was generally agitated by it.  Today I breezed in, closed my eyes whilst they found a vein, read a magazine and browsed the web whilst I absorbed the radioactive glucose and then fell asleep in the scanner.  Hopefully the results will be with Prof Hassan on Friday.

The end of chemo week and the weekend have all been good days.   Facebook friends and Blipfoto followers will already know that I went to The French Car show with Andy and his Peugeot rally car on Friday and Saturday.  There wasn't any hardwork to do, so we sat in the sun and drank tea, looked round the trade stands and cars and had a good time.  We took Andy's American Camper, it is fantastic.  Such luxury.  On Sunday I had a leisurely start, went to Leicester in the afternoon to look at an MGBGT (it is on ebay, I made him an offer, he won't end the auction early, so I will be at the mercy of the ebay bidding machine) and then called in to see some old Cambridge friends who now live in Leicestershire and we haven't seen for 10 years.  Audrey has given me some very useful information on alternative/complementary remedies, which she is involved in.  Looking at a major diet change, ways to make my body more alkaline and other possible strategies to help me beat the cancer for longer.  Anything has to be worth trying, the worst it could do is kill me. 

On Sunday evening Andy turned up with Ed, Scott, Max and Angus with the van and trailer.  We bolted the rear crossmember into the Skoda and 3 of them picked it up and wheeled it onto the trailer (once we freed the brakes off).  I was impressed, thought it would be heavier.  It is now in the workshop, where I can go and do bits and many others have volunteered to help.  Thank you everyone.

Thursday 25 July 2013

Good days, bad days

Into cycle 2 week 2 and it has been a roller coaster ride.  The weekend wasn't great, Monday and Tuesday were grim and things picked up on Wednesday.  Feeling OK today.  I think the combination of the steroid withdrawl and the change of chemo chemicals does my head in.

On Monday I was starting to doubt my sanity.  I had become almost obsessive about buying something to cheer me up.  I spent hours on the internet scouring ebay and model shop websites hoping I would find something to cheer me up.  Every time I found something my brain then went into "what the hell are you doing???" mode and told me I didn't need to do it.  On Tuesday I started looking at cars and found this  After much anguish with myself and my brain I chatted to Sharon and she seemed perfectly reasonable about it.  I was still in a bad way emotionally and mentally though, so I shelved it.  We were both very emotional and spent sometime just crying and hugging.  I suppose it is good that I recognise when I am emotionally unstable and don't just go mad spending money on things I will never need or have time to enjoy.

Felt much better on Wednesday morning  though and decided this was a good compromise.  After all, I have been looking at Caterham 7s and Morgans which would cost far more and be much less practical.  So I rang the man.  Unfortunately he had someone coming from France to look at the car on Wednesday morning and they bought it, so I can't have it.  Shame as it could have been fun. Felt good enough in the afternoon to go out.  Got the Lnd Rover out and went and sat in the tractor cab with Andy whilst he was haymaking.  Great to get out, great to spend some time with Andy and catch up with others.

Today's chemo was early, 9:00, as they are short staffed at The Brodey today.  Went fairly well, was over by 11:00.  I missed a phone call whilst I was there, it was the warden from Mum's flats.  Mum is ill again.  It is really difficult, I ought to rush over an help her out, but all the advice says stay away as picking up an infection from her could be catastrophic for me with my chemo reduced immune system.  The doctor has been and says she will come back on Tuesday,  what Mum is supposed to do between now and Tuesday, I don't know.  Penny has stepped in and is making calls and talking to the care agencies.  I think it will all be OK.

I am hoping that things will stay good for the rest of this week and next, lets see.

Sunday 21 July 2013

Steroid Withdrawl

In the first week of the chemo cycle I am on a steroid called Dexeamethodone.  You can't just stop taking it without potentially catastrophic impact on your blood pressure, so the dose reduces at the end of the week.  The reducing dose does your head in.  Uncontrollable mood swings/anger, total lack of concentration, tunnel vision.  Add to that the increasing nausea from the chemo and the fatigue and it is pretty grotty this weekend.  Managed a few jobs around the garden yesterday morning, but nothing much, other than that I have moped around in the office and on the sofa.

Chemohead is very strange.  I decided this morning that I should sort out my 2013 accounts, close down my business from the end of December, get the accounts finalised and sort out my tax liabilities.  Sat down in front of the computer, opened up my accounts spreadsheet and found out I finalised all my accounts on 3rd Jan 2013!  That was in the first regime of chemo, about cycle 7.  I don't remember doing it, a quick look says I have got it all right, so I am going to get them off to the accountant and see what I owe the revenue.  Hopefully they will owe me as I have paid some on account I think.

Tried to fill in a form from my pensions company yesterday, but I didn't understand the questions they were asking.  Why do people who have technical language put it in documents they send to their customers?  What is a drawdown amount?  How do I know how much my pension is worth, that's what I asked them!  It's even worse with chemohead and steroid withdrawl.  Got angry with it and filled in the wrong box.

Saturday morning I noticed I had forgotten to re-order my blood pressure drugs and they will run out on Monday.  That is the first time I have done that in about 10 years of taking them.  It drove me to tears, really angry with myself, bloody steroid withdrawl.

Lets hope things improve in week 2.

Thursday 18 July 2013

Thursday, Week 1, Cycle 2

It hasn't been too bad so far this cycle, I have managed to get out and about a bit, I haven't been as fatigued as I was in cycle 1.  I did sleep through most of the treatment at The Brodey today, it was quite warm and I had lunch before I went, so it may just have been a siesta.

I have got hiccups again.  Long term readers will remember hiccups from regime 1.  The Brodey haven't offered me anything for them and I would probably refuse it any way.  They seem to come on about 7:00 pm and last until bedtime.  The anti-sickness drugs must have something to do with them.

I have had several conversations with people about alternative medicine cancer cures.  One said she had a sudden thought that red foods would cure it and nearly bought me some tomatoes and raddishes.  She had no rational explanation, but lots of passion.  Someone else has been to Portugal to a Juice Oasis who claim not only to dettox but also to cure cancer with fruit and vegetable juices.  I did some brief research and can find as much evidence against the alternative strategies as I can for them.  Some of the 'marketing' seems believable, but I can find little real evidence.  What do you readers know?

Sunday 14 July 2013

Brighton Rocks

Have had a great day out in Brighton today.  We visited the Royal Pavillion, The Lanes, The Pier and The Volks Railway.  It was very hot, very sunny and very busy.  But great fun.  Had afternoon tea with Snook and then headed back. The M23 was horrible, so we used the A24, which took us straight to a busy M25.  Took about 2 1/2 hours to get home.
Need to be up early to take my chemo pills and then across to The Brodey for some IV.   Saw Prof Hassan last Friday and we are still looking to scan and review at the end of this cycle. 

Saturday 13 July 2013

Wow, what a day

It was the hottest day of the year so far, which is a good start. Woke up in the Hickstead Travelodge at about 6:00, it was hot already and very bright. Up and showered by 8:30 and on our way. Didn't recognise Snook in his sports car with his dark glasses on, but he walked over anyway and off we went.

About 20 minutes drive to The Bluebell Line where we consumed a hearty breakfast and then went on a guided tour of the engine collection and The Atlantic Project. Fred, our guide, has created a CAD model of an Atlantic class locomotive and is now building one. Marvellous man and a fantastic project.

From there it was onto the footplate of the 12:15 service to East Grinstead. A fantastic experience, OK it was far too hot and sweaty, but what an experience. When the regulator opens and the steam fills the cylinders, the whole world hisses, shakes and moves. Even with the 20mph speed restriction in place, it was amazing. Thanks to everyone who made it happen.

Snook had prepared an excellent lunch which we ate in the picnic area. It really is summer and it was fantastic to be out in the warm sun eating and drinking. We then had a sit on a train. We were going to take a ride up the line, but the service was delayed, so we got off and had a mooch round the museum. Lauren and I raided the dressing up box.

Snook and I then took more pictures of the engine I travelled on and Sharon and Lauren had a look round the shop. A fantastic day, great people, good friends and family. Everything I love in the world, and a real steam locomotive!

Left Snook for the Travelodge and showered off the coating of coal dust. Chilled for a couple of hours and have just been out for a meal in Burgess Hill.

Now off to bed to sleep the sleep of men of steam.
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Friday 12 July 2013

No cause for concern

I know, I haven't blogged since the beginning of the week when I was hoping I would get better and the pills would work.  You have all been thinking "Oh no, the indigestion is so bad he can't type!".  Au contrare Rodney, Au Contrare.  I have been having a good time!

It is after all Chemo 'Good Week'  when I am asupposed to get a break from all the drugs and poisons and get on with life.  So that is what I have and will be doing.  Tuesday was bit grotty, but the medication had clearly started to work and I was up and about instead of being bent over double with stomach cramps.  Wednesday I went for a drive with James to Leamington and back and then went and rowed up hay with Andy.  Out in the sun and having a good time.

Yesterday I took Ian for his birthday treat.  I had offered him the chance to have a day out with me and drive a Caterham 7 on a circuit, but that isn't what he wanted.  He wanted to spend the day with me driving and him in the passenger seat.  So we did.  Picked the car up from Berkeley went south and over the old Severn crossing to Chepstow, up the Wye Valley to Monmouth, over the hills to Hay-on-Wye, across to Brecon, over the Beacons to Merthyr, across The Heads o The Valley Road to Abergavenny, B roads to Monmouth, back down the Wye Valley to Chepstow and back to Berkeley.  I think the only time Ian stopped smiling was when it all got a bit sideways on the way to Hay on Wye, when his expression went to surprise for a moment, then back to smiling.  We had a great time.  Picture on blip here

I did let him have a sit in the hot seat, so he knows what it will feel like when he is old enough to drive one

Monday 8 July 2013

The worst chemo 24 hours yet

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.

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.

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.
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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.

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.
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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.

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.

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:


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.