Not good news.

Just back from seeing the consultant, who has the images from my scan but not the full report.  However, one of the radiographers had been down before I saw him to draw his attention to the two bright areas in my groin, which means either they didn't get rid of all the cancer cells when they operated and it is growing again or there is some post operational infection.  He is also concerned about my right kidney which also showed some abnormality and that correlates with the lower back pain I have been getting.

Very down about it at the moment, so I am getting it out of my system by writing.  Sharon is checking it from the sofa to make sure I get it right.  Round 7 of Chemo is going ahead on Monday, so 3 more days at hotel Churchill, hope they have my usual suite available.  Need something fun and exciting to do this weekend, any ideas anyone?

My brother is out in India doing voluntary work at the moment and he is blogging as well, so if you fancy a change from the world of chemotherapy and cancer have a look at http://inpondyable.blogspot.co.uk/

Quietish day

Late start as we had a lie in. Walked across to the doctor's to pick up my prescription and took it to the pharmacy. Penny (my sister) turned up to do Mum's shopping and called to see us.

I read piles of documents in preparation for this evenings School Governors meeting and went out about 4:30 to chair the meeting. Home about 7:30, ate tea and Simon came round for a chat.

Was going to bed early as the District Nurse is due at 8:15, but I have started watching Question Time so it will be late. Consultant at 1:00 tomorrow, let's get a decision.
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Home again Home again giggety gig.

After breakfast we walked across to Chichester market, bit of a disappointment, markets aint what they used to be.  Then we went up to Chichester Cathedral, had a wander round, amazing building.  Back to the car about 11:30 and drove down to the sea at Selsey.

Proper sea, not like the creeks and harbour of Portsmouth.


Took a picturesque cross country drive from there to Winchester, via the South Downs.  Some fabulous views and at one point a section of something very rare nowadays, open road without another car in site.

Used the Winchester park and ride, had a wander round town and then walked out to the Cathedral Christmas market.  Coffee and cake in the coffee shop and then a walk round the Christmas Market.  After that we met neice Jess and took her for a pizza.  Jess said it was the first hot meal she had eaten in a couple of weeks.  Student life must be such fun.  Walked back down, got the bus and drove home.

Think I have done really well over the two days.  Walked loads, driven loads and generally felt pretty good.  My walking is slower than it used to be and stairs aren't easy at the moment.  Think that is mainly a lack of fitness from doing so little through the chemo.  Got a bit dehydrated today, making it up now and should sleep well tonight.  Came home to a letter confirming my appointment on Friday and one with Radiotherapy on 14/12.   Yipee?




 

Chichester

Two early bird special breakfasts for £10 including tea and coffee in Chives cafe. Good start to the day.
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Scanned

Got to The Churchill to find a huge car park queue. Left Sharon to park the car, which took her ages, and went in to The Department of Nuclear Medicine. Checked in, sat down in the waiting room and as if by magic a radiographer appeared asking for me.

Straight into one of their little nuclear bunkers to have a vein pierced. Took 3 nurses 4 attempts to get a vein they could get the nuclear tracer into. Evidently one of the effects of chemo is making it more difficult to get a vein. Sat covered in cotton wool and micropore for 90 minutes whilst the tracer spread, then into the scanner.

I fell asleep in the scanner (again!). Over in about 30 minutes. Went to the cafe for a toasted sandwich and then hit the A34.

We were on the top of Portsdown Hill by 3:30. Fabulous view out over Portsmouth to the Isle of Wight. Went down from there to the Travelodge and checked in. World first, the Travelodge heating was on in the room!

Now sat in Rosarios restaurant in East Wittering. We have shared Chicken and Chorizo in cream and wine, steak kebabs, deep fried courgette and aubergine with potatoes in a peppery tomato sauce followed by Profiteroles. Excellent.
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Quiet day at home

Taken it easy today in preparation for a couple of busy days. Got a PET scan in the morning and then we are going to the seaside. Well actually a Travelodge between Portsmouth and Chichester. Then on Wednesday we are planning to go to Westminster Cathedral Christmas Market.

Posts and pictures of everything but the scan.
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Pleasant weekend

Went grocery shopping twice on Saturday, once for us and once for my Mum.  Watched the Grand Prix qualifying and didn't do much else.  Didn't have time to do much else because we didn't get up until late. Our Su7nday lunch guests cancelled and for a while I considered a trip to Bristol to watch/marshall on the Allen Trial.  Sharon talked me out of it and she is probably right, I wouldn't have coped with being outside that long and I certainly wouldn't have been running up any hills.  However, thanks to all who provided info and especially to Michael (ClassicalGas) for the offer of detouring to pick me up and driving me to a section to help Marshall.  It means a lot to me that so many people are out there listening and supporting in whatever way they can.  Also thanks to Richard for his email, I will reply.

Today our guests had to cancel because Samuel has Chickenpox.  Wish I had Chickenpox, so much easier to deal with.  So we had an unexpected free day.  We braved the flooding and went to Moreton In Marsh for lunch and a bit of a mooch.  Excellent toasted sandwiches in Tilley's Tea Room.

There is a Wellington Bomber museum on the edge of the town, I have been driving past it for 20 years and have never been in.  So we went there.  If you are planning to get there, go quick, not sure how long the curator will keep going.  He told us he joined the RAF as a Wellington mechanic in 1940.  Lets say he was 16 then, he is 88 years old.  The museum is about the size of our front room and is stuffed full of pictures, manuals, a Merlin engine and allsorts of other memorabilia.  The highlight of the visit was when we left.  The door had been blocked with sandbags to keep the flooding out and making it difficult to step in and out.  The curator insisted on stepping outside before me to help me step over the bags by holding my hand.  He didn't just do it for me, he did it for all 5 of the people who left when we did!  What a gent.

He is also a skilled engineer.  Here is his model of a 1930's AutoUnion racing car made entirely from scrap metal.

 I know they look like tyres, but they are actually concentric washers welded together.  The aerodynamic foil running behind the drivers head is an old wiper arm.

Drove back via Dover's Hill and had a walk to enjoy the view of the Vale of Evesham, could see all the way to the Malverns.  We then went across through Shipston on Stour and braved the floods back to Banbury.  I think the wading depth on the Polo is probably about 18 inches, it coped with everything today.

Cycle 6 Week2

The uncertainty has been getting to me this week. If we were on plan A it would all be over, if we were on plan B I would have 4 more cycles to go. But I think we are now on plan C. Radioactive PET scan booked for Tuesday results to be discussed Friday and decision about Cycle 7,8,9,10 to be made. Still haven't heard from radiotherapy.

Helped Lauren to change the wheel on her car on wednesday. Had to have a lie down afterwards. My arms ached, my back ached and I was out of breath. I look forward to recovering fully from this chemo, well except the vinchristine finger and toes.

Been to Coventry this afternoon to see a man about a cylinder head. Had a new District Nurse this morning. She noticed the PICC line entry point is a bit yellow, so I have to keep an eye on that.

Busy weekend with guests for lunch on Sunday and Sharon is off work all next week. Not really got a plan for next week yet apart from my scan and consultant appointment.
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Feeling more human

Well some sleep and rehydration has got me back to feeling near normal.  The fatigue is still there and the brain is a bit fuzzy, but I feel a hell of a lot better than I did at the weekend.  Was going to go out for a walk at lunchtime, but I will get soaked, mi9ght risk it anyway, perhaps a picnic and a stroll somewhere.

Starting to get a bit twitchy about round 7.  Wish I had a scan appointment letter so I knew that would be done before the next round.  I suppose it is just a case of wait and see.

Update on brain

Maybe I am not ready to drive. Simon has just been round And called me a miserable git for not responding when he flashed and waved at me this afternoon. Didn't notice him at all.
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Quiet weekend

Not done much other than play with computers and watch telly. Some of the cycling from Glasgow was good. Bit unfair giving that old bloke an engine though when all the others have to pedal.

Appetite is good and everything is starting to work again. Went for a short drive this afternoon to check the brain would cope and it did. Waiting for the lamb to roast for dinner, bit more telly, then bed. Had a short nap this afternoon.
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It's done my head in proper this time

Worst Chemohead yet.  Found myself halfway down the garden this morning in my socks, forgot to put my shoes on and didn't notice.  My head has been really fuzzy, concentration impossible, simple things a challenge.   Clearing a bit this evening, probably the Magner's Cider I had with the sausage hotpot.

Slow start to the day, then about 9:15 I  remembered it was Friday and the District Nurse was due at any time between 9:00 and 12:00.  Fortunately she didn't turn up until about 10:30 by which time I was showered and up.  An uneventful dressing change and flush.

Went and did Mum's shopping, good job I had a list as my brain wasn't capable of doing it with the list, would have been a disaster without.  Had lunch with Mum and came home with her bank card in my wallet, brain failure again.  I was going to be really lazy and drive and do the shopping, but I didn't think I was safe behind the wheel.

Had  brief sleep early afternoon for about an hour and then didn't do very much at all until cooking tea.  Now sat on the sofa watching Children In Need.  It's very difficult listening to them talking about people dying of cancer.  Also had news that one of my fellow school governors has lost his battle and died from lung cancer this week.  Staying positive is a big challenge and I am just about managing it at the moment.  I really want a date for my PET scan and some good news about what's happening next.  Not knowing if Chemo will carry on, how well it's working and what's next is doing my head in.

Nothing planned for the weekend, see how I feel.

Home

Well actually I was home yesterday about 11:45 but fatigue and nausea took over. Felt well enough to sit on the sofa, perked up enough to eat a jacket potato for tea. Fell asleep on the sofa a few times as the steroids wore off and perked up for a few hours when the second dose kicked in.

Sharon is off to London today so I am awake early and feeling OK at the moment. I am sure some porridge will set me up for another day on the sofa.
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Becky reads the blog!

Just been having a chat with Sister Becky. She has not been working over the weekend and Monday so she had a read of my blog post to see what state the ward was in before she came back! She also said I have had an enormous amount of chemo drugs through me and she thinks I have done incredibly well.

Moved beds today. Out of my radio active bunker into a 4 bed ward. First time I have been the oldest on the ward. That changed this afternoon though after a bed swap. Also the first time I have been in a 4 bed ward and chatted to anyone. Thanks Jake.

As for the food, managed a jacket potato and cheese for lunch but couldn't face an evening meal. Had a can of ginger beer, some jelly babies and a kit kat, much better than food and Martine told me to eat what I feel like when this all started.
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Hotel Churchill

The hotel is very busy tonight. This means I am in a room used for high dose radiotherapy. I have my own lead screen and free television. There seems to be some confusion over the bathroom though. One nurse has told me not to use it another said it was Ok to use.

There was a quality control problem with the chemo drugs so start was delayed. No idea what time I will get out on wednesday. The picture is my bathroom door.
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Round 6 here I come

Back from Dorset mid-afternoon. Trip to Sainsbury's to stock up on goodies for a 3 day stay at Hotel Churchill. Not looking forward to it, but I think I have the resources to survive the stay.
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Sunny Day In Dorset

Had a long walk round Bridport this morning. It was market day and there was a farmers market. We also had a wander round a couple of the antique (junk) and vintage (2nd hand) emporiums followed by hot chocolate cake in one of the hippy cafes.

Went from there to West Bay for a stroll round the harbour. Managed to avoid buying a portion of chips, but it was difficult. Had a short sleep when we got back and sat and wached some tellie. Legs ache, back aches and I am starving, Frank has a roast in the oven so things are looking up.
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Been to see my consultant.

Had an appointment with Prof Hassan today. Went armed with a list of aches pains and numbness I have had. He gave me a good going over, tickling my feet and legs with a tissue to establish how serious the numbness was and pressing my back to see what pain there was. Outcome, a PET scan has been booked, Vinchristine has been stopped for next round and we will be reviewing what happens next on 30/11, before cycle 7. He says I have done unbelievably well to tolerate the amount of chemo I have had so far. He was worried about dose levels when it started as he is used to dosing 19 year old boys. He seems to have successfully poisoned me without finishing me off completely.

Went across to the rally school yesterday lunchtime to catch up with everyone. Nice to see them, but it wore me out and I fell asleep on the sofa in the evening.

In Dorset this weekend so updates will be at the mercy of connectivity.
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Out and about today

Had a phone call from a friend last night to see if I was up to driving to Coventry for him.  He had some bits he needed dropping off in Coventry and couldn't get away to do it.  So I did it for him.  Left home about 10:00 and was back by 3:00, which included half an hours wait to get a cylinder head skimmed during which I had lunch and forty winks.

Legs are still aching and I think the Vinchristine has got to my feet.  Must talk to the consultant about it on Friday.  Apart from a brief nap at lunch time I have kept going all day, and I feel pretty good for it.

Had to recover today

After yesterdays full on day I was a little fatigued today.  Managed to go to Sainsbury's with Sharon and do the weekly shop and managed to watch the Grand Prix from yesterday, but other than that I haven't done much at all.  feeling good though and planning to get out and about a bit tomorrow.

Faaaaantastic Day

Well maybe thats a bit of an overstatement, but it was better than good.  I have driven 90 miles, walked a couple of miles, watched an hours motorsport (not the Grand Prix!) and taken Sharon out for lunch and to IKEA.

Up fairly early to go to the Falcon Motor Club  Guy Fawkes Trial.  Decided yesterday that if the weather wasn't too bad and I was feeling OK, it would be fun to drive over to Dunstable and stand in a field for an hour or so watching people try and drive preposterous motors up grass slopes, that's Trialling.  Well the weather was too bad but with the right kind of clothing all weather can be overcome.

Sharon says she enjoyed it, but she was cold and wet. The rest of the trial pictures are here.  I think lunch in The Chiltern Visitor Centre and the walk round IKEA were more attractive to her.  Driving the 90 miles in the Polo was fun, chucked it round the roundabouts of Milton Keynes.  Doesn't matter what you do, you can't induce understeer, it doesn't have enough power!

Doing so much without needing a nap or a lie down has done wonders for my mental state and maybe even my fitness.  I need to get moving this week and get out and about and do some things.  Feel much better when I am occupied, driving and getting out and about does wonders for my confidence and I feel so much better.  So, things to do.

Children make me smile

After a fairly quiet week I was expecting visitors on Friday, Rob, Jude, Bella and Sam.  I had been thinking of getting the Scalextric out for a month or so, but the thought of a 50something bloke playing with his Scalextric on his own was just sad.  However, visitors with a 4 year old boy, excellent excuse.  We all spent an hour on Friday morning squealing, laughing and having a good race.  Well actually Rob had one go, Jude had one go and the kids spent the rest of the time in charge of the controllers, trying different cars and having fun.  I didn't even get a drive!  But I did have all afternoon to play after they went............................

Video on facebook

Week 3 of the cycle is about to start, physically I feel good, emotionally and mentally at the moment I feel fragile.  I know it's just a change of timescale and plan, but I am so disappointed it is going to hang around into next year.  Those extra few months seem a small price to pay if it works and kills the cancer cells, but something inside of me just wants to get on with life.  After all, none of us know how much we life we have left and I would like to get on with mine.   The whole avoid infection, take it easy, don't overdo it thing is starting to get to me.  I am bored, I need to do something, finding things to do that don't involve risk of infection, over exertion and being careful is not easy.

Few quiet days

Not done much. Slept quite well and plenty of it. Late starts, not much other than a walk here and there. Had bone ache Tuesday but it had gone by Wednesday.

Currently sat on Lauren's sofa waiting to hear that Sharon is on her way so we can start cooking. Chicken and Chorizo paellla, bought my own pan and ingredients as it was a last minute plan from Lauren.

Been a bit down emotionally since coming out of hospital last week. I think the 10 cycles and going on into next year has taken its toll. I have gone from next cycle being the end to being just over halfway and I never did anything! Will find some resources in there, need to do something interesting at the weekend. All ideas welcome.
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