Sunday, 30 June 2013

Chemo not so good day

Had to do mum's shopping and ended up doing washing and sorting out bedding for her too.  Then we had to do our shopping too.  Got a food craving on the way to Sainsburys and walked round the store eating a falafel wrap.  I paid for it first, not like those snotty nosed kids whose mothers stick a donut in their face to keep them quiet.  

Saw the start and end of the grand prix either side of shopping and then fell asleep on the sofa.  Out like a light for a couple of hours.   Felt quite down when I woke up, wondering if the chemo will be any easier or better with just the one drug this week.  Cheered up now as Simon has been round for a couple of hours, I have had a nice summery meal and it's time for bed.

Saturday, 29 June 2013

Breaking News


Good Chemo Day

Week one of regime 2 behind me.  We have been to Bloxham steam fair today.  Sharon and I have been going since we moved to Banbury, most of the family have joined us at some point.  Norman and Lesley joined us today.  I wasn't expecting to last long as chemo has got the better of me every day this week at some point. But apart from a food craving and a sugar craving I have been fine all day.

When Martine told me, last year, to listen to my body, I didn't really understand.  During regime 1 I had milk cravings and knew exactly when to sleep. Today about 12:30, I had to eat, something spicey, something filling and quick.  Fortunately we were close to a thai curry provider and sweet potato and carrot curry did the job.  I went from wreck to fine.  About half an hour later I needed sugar, bag of fudge and I was fine.   Weird, but I know what Martine meant now.  It seems a whole new level of communication exists in my body, if I can just use it to get rid of the cancer I will win.

I have just watched The Strypes from Glastonbury on the beeb.  How can ones so young produce such blues?  Check them out.   Lee Brilleaux had to smoke 40 number 6 a day for 20 years to get a voice like that.  I have come to the conclusion that souls are re-encarnated, no way could they do it in so few years.  

Friday, 28 June 2013

Chemo head

Wel it is the end of this first week of chemotherapy and it is taking its toll.  I have been able to get on with some odds and ends, but it has made me really tired and a bit nauseas.  Managed a couple of governor's meetings and some phone calls and paperwork but haven't had the energy to achieve the things I hoped.

It hasn't been helped that my 30 minutes of chemo requires a pre-chemo injection ad 30 minute wait.  So far it has been between 2 and 3 hours each visit.  Could be worse, I could have a 2 hour car journey to Oxford for it.  The Brodie Centre is great, fantastic staff, good atmosphere and so far I have only encountered nice patients too.

Struggling to write this as chemo head has taken over and I am watching Seasick Steve live from Glastonbury on BBC 4.  Concentrating on one thing with chemohead isn't easy, trying to do two is almost impossible.  But I think I have made it.  Seasick Steve has finished and it has taken me an hour to post a blipfoto and write this much blog.

Tuesday, 25 June 2013

Feeling OK

Went for another load of chemo this afternoon. Arrived just before 2:30 and left about 4:45. So much for half an hour or so. It was very busy at The Brodie and it took ages to get started. Actual treatment time was probably just under an hour.

Have also been to an academy governors meeting. I told people I was planning to resign at the end of term, they may have convinced me to stay on as long as I am able to get to meetings and be coherent, thinking about it.

Had a phone call from one of my motorsport trialing mates. He was volunteering to pick up my Skoda and put it together for me, which others have already volunteered to do. So many good friends that I now have competition for help! What can I say? Thank you all.
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Monday, 24 June 2013

Seconds away, Round 2

Started my second chemo regime today.   Nine tablets at breakfast, 3 more at the hospital, a bag of IV in my PICC line, then 4 tablets more for lunch, just had one for tea need another before bed and then the same again every day for 2 weeks. Most of them are antiemitics to stop the chemo making me sick.

My appointment at The Brodie Centre was for 9:30, but you know what happened, you've heard me ramble on about NHS appointments before.  Dr Pratap said it would just be a short appointment at the Brodie for chemo, that was part of my reasoning for asking for it in Banbury.  I left the hospital at 12:07.  OK some of it was my fault as I hadn't gone over on Friday and picked up some tablets that I had to have an hour after food and an hour before the IV chemo.  But I had breakfast at 8:30, gt the drugs at 9:40 and took them and the IV chemo didn't turn up until 10:15.  They are all doing the best they can with the resources they have available, they just need more resources.

Came home, popped over to see Mum and encourage her to take some of her pills.  Then I dismantled the barbeque, loaded it in the Land Rover and took the remains to the scrap bin at the tip.  Came back the long way and felt pretty good.  The sun was out, I was driving the Land Rover and all was good with the world.

Sunday, 23 June 2013

A great birthday weekend.

I have had a lovely weekend, preparing me for the chemo regime.  Saturday, Lauren was here early in the morning and we spent all day getting organised for a little birthday party in the evening.  We went shopping, reorganised the house, put up the borrowed gazebo and did some cooking.  We had told people any time from 4:00 pm and the first guest turned up about 4:45.  By 8:00 there were between 30 and 40 people, the barbecue had broken and beer was being drunk.  Good times.  Barbeque was usable, but doing an even better job of burning sausages than usual.  I didn't get much chance to talk to people but just having so many friends here did me good.  Was great to see some of the regualr blog readers putting names to faces they previously only knew via facebook and the blog.

Today we have been to Haynes in Bedfordshire for Haynes Village 100  It was bought to my attention by a motorsport friend and seemed like a nice way to spend an afternoon.  Pictures are here  Lauren and Ian stayed Saturday night so we got up for a cooked breakfast and a leisurely start.  I opened all my cards and a few presents.  Lauren has bought me a book to write things in.  I have already started a little black book with all the essential information they will need to know, but this one is much more substantial and will have room for memories, feelings and things.  I cried when I opened the book.  It focused me on the future, theirs is bright, mine is not so.  On the way back we passed the airship hangers at Cardington and visited this dovecot, it's huge.

Had a visit from The Howards when we got home.  Great to see them, more good friends.  I have also had an email from a friend mentioning a Cancer Centre in Bristol who practice some alternative therapies like visualisation.  Going to do a bit of googling if chemo doesn't numb my brain too much tomorrow.

Friday, 21 June 2013

100th Blipfoto Today

As well as writing the blog I also post a daily photo at Today is my 100th blip posting. I had plans a couple of weeks ago to make it a photographic expedition day looking for good 100 theme photos.

Instead I spent the entire morning having a PICC line fitted, called in to see Andy and Ed, then spent 20 minutes in my GP's waiting room before updating her and getting her to investigate getting a second opinion.

Had a great phone conversation with Snook as well this evening. He has helped me deal with lots of things along this journey. Sometimes by distracting me, sometimes by inspiring me and sometimes with sound philosophy. So many people out there are supporting and helping. Thank you all.
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Thursday, 20 June 2013

Another Great Day

We had a very peaceful night at the Abbey Hotel.  I didn't expect to have an actual abbey next door,
with a chiming clock.  Slept through it until 5:00 am, then heard 7:00 and 8:00.  Great hotel breakfast, like it should be with cereals, fruit, fry up and croissant.  Not all at once obviously.

Then we went back down to Morgan for our factory tour.  They were running late because two parties had not turned up.  In the end we went with the first group to arrive.  There are lots of pictures here.  It was very interesting.

My highlights from the tour:-
They have changed the way they produce cars to enable them to make more.
They still put the cars on 2 wooden trestles to build them.
The only quality inspection is at the very end, and they nearly all pass.
There is informal peer quality review along the way.  If the aluminium won't fit the ash frame Dave goes and asks Nigel what he is up to!
There were quite a few young craftsmen in the factory, Morgan will live on.
I didn't manage to blag a ride in a 3 wheeler.

After the tour we spent some time in the museum and then started home.  Stopped in Worcester for a look at the Cathedral and city centre and some coffee/tea.

Off to the Churchill tomorrow to get a PICC line fitted.  Oh Joy.

Wednesday, 19 June 2013

What a day

When I told my Mum that the cancer was back and that there was nothing they could do to stop it taking my life, she said "have a bloody good time then".  Today we did.

Lauren and Ian bought us a day's Morgan hire as a joint birthday present.  I wanted to book it asap and certainly before chemo started again.  So today we did it.  They are fantastic cars. I have driven all sorts of things over the years but today was the best days driving I have ever had.  the sun shone, the scenery was fantastic and the car was awesome.  We picked the car up from the factory in Malvern Link, drove across to Hereford, up to Ludlow, stopped for coffee, on to Craven Arms the across to The Three Tuns Brewery in Bishops Castle for lunch.  We then went down to Clunand back across to Leomisnster on B roads.  Sharon had a drive, she even started to get confident.

Tonight we are staying at the 4* Abbey Hotel in Malvern.  We ate out at an Italian, have had a couple of beers and then back to the hotel for an early night.  It was an early start today and tomorrow will be busy too.

Breakfast about 9:00 and then back to Morgan for a factory tour.  What do you think the chances are of me managing to blag a drive of a 3 wheeler?  They do hire them and they do a track experience day, but I just want a go.

Lots more pictures and video here

Tuesday, 18 June 2013

Anuvver nice day except........

I had to go to The Brodie Centre for my chemotherapy pre-admission. Chemo starts on Monday, PICC line is being fitted at the Churchill on Friday, will have to go to the medical centre sometime Saturday to have it checked. They tell me the chemo will make me sick, give me diarrhoea, constipate me and give me headaches. Sounds fun.

Before that I went to see John for coffee and a go of his hydraulic press. We pushed the new bushes into the Skoda suspension swing arms. I think that means I have everything I need to put it back together, just have to find the clutch release bearing.

After hospital I needed to do something fun so I went and drove some of the local Warwickshire lanes in the Land Rover. Sausage and pasta for tea, get organised for a day with a Morgan tomorrow and an early night for an early start tomorrow.

Regular blog readers are welcome to contact me about my birthday celebrations, on Saturday (That's an invite). Planning to light the bbq, drink some beer and mix with people before chemo starts and I am in isolation in the toilet avoiding infection, nursing my headache and suffering from at least one of the bowel side effects.
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Monday, 17 June 2013

Great Weekend and week off to a good start.

After a bad Friday, the weekend was much better.  We went to Cambridge on Saturday for a haircut.  Lauren drove all the way there and all the way back.  She was clearly paying attention all that time she has spent in my passenger seat, she anticipates well, keeps herself safe and drives with confidence.   Sunday we went to Silverstone for MG Live.  Sharon and I first went about 25 years ago and have been many times since, with and without the MG.  The racing was good, with a variety of grids, the parking areas were great with a huge variety of cars and the classic bus tours of Silverstone were great fun (Lauren and Sharon went twice!).

Today Mandi from Macmillan came to see us.  We had a good chat, found out some useful things,cried and laughed.  She is going to put together an advance care plan for me.  This will tell all the health care professionals that I don't want to die in hospital and I want to spend as little time overnight in hospitals as I possibly can.  I'm not being stupid, if the chemo results in an infection I will go in for antibiotics, but I don't want to end up like the elderly men on the Oncology Ward whilst I was having chemo.  I would like to keep some dignity and Sharon is happy for me to be at home.  I am writing about it on here so everyone else knows my wishes.

Whilst we were chatting to Mandi, Andy turned up in the van and snuck down the side of the house to the Land Rover. By the time I got out there he had got the clutch pipe and cylinder off, fitted the new cylinder and was almost ready to bleed the system. We bled it and it is now sorted.  I took a run out in it this afternoon and called at the scrapyard to get a 'new' headlight switch for the Polobanger.

Sharon has had her first grass mowing lesson and spent a whole chunk of the afternoon in the garden.  I joined her for a couple of little jobs.  It is such a nice place to be.

Friday, 14 June 2013

Not A Great Day

Today's meeting at The Churchill confirmed that the cancer is back.  The biopsy analysis says it is sarcoma again, in my groin.  The last PET scan also showed up an area in my left kidney.  I didn't see Prof Hassan, Dr Pratap stood in for him.  Probably a good job as I fear I would have been angry and agressive to the Prof, but Dr Pratap is so lovely I stayed calm and logical, only crying when she was out of the room.

Dr Pratap offered 2 different possible chemo regimes to slow down the cancer after she had confirmed it was back and that it will take my life.  I have said I will try one of the regimes as long as I can have it at The Brodie Centre in Banbury.  I can't see any point in going to The Churchill every day for 2 weeks, the time it extends my life by will be spent sat in traffic.  We are planning two rounds of chemo and then review.  If it isn't working we can swap to the other regime which involves daily tablets and has a side effect of raised blood pressure.  With my abnormally high blood pressure the tablet version sounds dangerous.

I asked the "How long do I have?" question.  Dr Pratap's answer was, on average a year, some people live longer, others less.  So I should make my birthday on 23rd June this year, might make Christmas and could even make it to my birthday next year.

I don't really feel any different to how I felt yesterday, I knew the cancer was back, I can feel the tumour getting larger.  It is good to have it confirmed, the doubt is gone.  I am not sure there is any point in getting a second opinion, but I have made an appointment with my GP for next week as she will have to initiate the process.  I also checked with Dr Pratap and she suggested a couple of places that may be able to give a second opinion.  However, I have a tumour, surgery removed it before and it grew again, intensive chemotherapy didn't get rid of it, radiotherapy only works on small areas.  They don't have any more tricks up their sleeves.

When Dr Trent first had to tell me and with Dr Pratap today, I really felt for them.  It must be an incredibly rewarding job when everything is going well, but must be so hard with news like mine.  They do an incredible job and deal with enormous emotional stress.  I respect and admire them.

Thursday, 13 June 2013

Black Friday Again

After a pleasant trip to my dad's,  I have had a bad day today. Picked Mum up from hospital last night and got her back to the flat. She is still not right and it is grief I could do without. Been over 3 times to check on her, I don't think she has eaten anything, all of which I could do without.

Also tried to fix the Land Rover but it wasn't being helpful and I didn't have the physical strength or mental stamina to deal with it. Thought I would postpone it to another day and that set me off wondering how many more 'another days' I have.  Perhaps I will get some idea when I see the Prof tomorrow.

Tuesday, 11 June 2013

It's not my day.

Just went out to the Land Rover to load it up for my excursion. All the clutch fluid has disappeared and I have no clutch. Polo going into action, I wonder if it works as a camper? Will pack the hammock and find a couple of trees.

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Hospitals, family and stuff.

Had a great couple of days in Dorset.  Well OK, overnight and two lots of traveling, but I love traveling. So I am going to do some more.

Mum went into hospital last Thursday with an infection, it made her very weak and confused.  The doctor thought it would be the best place for her and I agreed.  However, it seems getting her out again is almost as chaotic as my exits from The Churchill have been.  When I went in yesterday they said the OT and PT would do an assessment this morning and she would be able to come home this afternoon.  I was planning to go and see my Dad this week, so I delayed a day, hoping I could pick her up this afternoon, get her settled in the flat and go tomorrow and Thursday.  Hospital rang this morning to say the OT can't do the assessment until tomorrow, so Mum can't come out until then.  So, If I go to see my Dad, I won't be able to collect my Mum.  If I don't go and see my Dad, I don't know when I will be able to.  I am planning to drive over this afternoon, after I have been to the hospital and checked they can cope with letting my sister know that Mum needs picking up.  Then I can go and see Dad on Wednesday morning.  I just want a simple life.

Not sure what signal I will have in terms of wifi, should be able to blog from the blackberry and can usually manage to get a blipfoto up from there, but just in case I am taking the Olympus and the tablet.  Might be visiting Macdonalds for coffee and free wifi.

Looking forward to a long trip in the Land Rover.  I am aiming to find some Suffolk fords and might even try a few lanes round Thetford way.  Need to be careful though as I am not as fit as I used to be. 

Just had a phone call from the hospital, they wanted to arrange a CT scan for Mum, I told them she was in Juniper Ward and they could go and get her.  They told me she had been discharged!  Time to stop blogging and walk across to the hospital.

Saturday, 8 June 2013

Just realised i haven't blogged all week

It has been a pleasant week. Not achieved a great deal, but the sun has been out, I have been surrounded by friends and family and very few things have made me cry. 

Had the needle biopsy on Wednesday, uneventful, and the results should be out for next fridays meeting with Prof Hassan. People have been saying I should get a second opinion, anyone know how I do that?  Suppose I could ask my GP or the Macmillan nurse. 

Monday, 3 June 2013

It's been a great weekend.

I have been doing things I enjoy with the ones I love.

Went to the theatre on Friday evening.  It is the 25th anniversary of Lauren's Dance School and they were putting on a gala performance.  I have sat through many dance school productions over the past 20 years, but for obvious reasons, Friday was special.  Lauren danced in several numbers and had also choreographed one.  I am very proud of her.  My sister and her kids and my mother also came, so a family outing with Ian along too.  We all had tea at ours.  My sister is clearly upset about my situation, I need to sort out a time to talk to her.  I am still crying about it now and then.  The strangest things set me off.

On Saturday morning I read the programme from the Gala and reading Lauren's biography brought tears to my eyes.  I walked into town and back in the afternoon to get Sharon's birthday present.  Sunday was a great day, Shelsley Walsh Hillclimb with Ian.  I have always loved motorsport, I can remember going to watch the grasstrack racing with my Dad when I was about 10, I don't like the big bucks stuff like formula one, I like good grass roots club stuff.  There were cars out on Sunday that were built and maintained in someone's garage at home and they do 120 mph, uphill on a 1000 yard long track that is 12 foot wide at it's narrowest point.

Today we have been to Stratford Upon Avon for a bit of a mooch.  I like Stratford, it is always busy with people who are not in a hurry and are there to enjoy themselves.  It always reminds me of Cambridge with its groups of tourists.  We picked Lauren up on the way, went out to lunch, had a walk round the town and an icecream by the RSC.  I captured an interesting image for today's blipfoto journal.

Tomorrow is Sharon's birthday and she wants to go and see some animals.  So we are off to The Cotswold Farm Park.  It is the farm you see on Countryfile that belongs to Adam Henson.  Rare breeds and other stuff.  I think we will make it a Land Rover trip as there are some lovely fords just up the road and some places to hunt bluebells for her.  I was hoping to post a link to the video from last Thursday's day out in the Caterham 7, but it is still uploading to youtube.  It takes so long!  Try this, it may have uploaded by the time you read it.