Thursday 30 May 2013

What a day.

Had a fantastic day today.  We hired a Caterham 7 from Sevenhire and drove from Berkeley to Hay on Wye and back.  187 miles and only one of them had the roof up.  Even in my current state/mood it still brought an instant grin to my face.  There are loads of pictures on facebook and I am editing up some video, but as a taster, here is a blast of video.


It really was a good day, doing something I love with someone I love very much.  Sharon enjoyed it too, the 7 made her grin too.  She also declared it was more comfortable than my Polobanger.  The Roadsport model we had today was more comfortable than the Supersport Lauren and I hired in 2011.  Today we had leather seats and softer suspension.

It was Hay on Wye Literary Festival and the town was packed.  We managed to park on the High Street, but it was only a 30 minute parking bay.  We had a short walk and a coffee before looking for somewhere else to park, but it was heaving and they were queuing for every car park.  So we headed for Abergaveny and Monmouth and had lunch in a cafe in Monmouth before blasting back through the Forest of Dean.

I haven't had so much fun since Lauren and I did it in 2011.  If anyone else fancies a ride, I am open to offers.  

Wednesday 29 May 2013

A Day Out in Gloucester

Got to Gloucester just before 12:00 and went straight to the docks. Coffee at the waterways museum comes from a vending machine, so went to the cafe across the carpark for a drink and cake.

The waterways museum is full of interesting stuff, but getting a bit tired and in need of an update. We walked from there to the cathedral. Even as a non religious person I am always moved by the magnificence of cathedrals and the devotion of those who created and now maintain them. The stained glass is amazing, the cloisters splendid and the size enormous. Sharon lit a candle and said a prayer for us all.

I have only shed tears twice today. Once when I received Snook's comment on the last blog post and then when Sharon decided to light the candle.

This evening we have been for a walk around Stroud and found The Sorrento restaurant. Excellent pasta. Now laying on the bed in the Travelodge watching tele and hoping for better weather tomorrow.
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Tuesday 28 May 2013

Dealing with it

It has been a weekend of family and friends, country walks, sunshine and contemplation.  If the experts are right, then so be it. It will be time to get on with the rest of my life, tidy up the mess I live in, sort out loose ends and have lots of family and fun time. 

I have emailed my Macmillan nurse at The Churchill and asked her to find out what is going on with appointments.  I have provisionally booked a Caterham 7 for Thursday, but the weather doesn't look brilliant.  Sharon and I will definitely go somewhere for a couple of days whatever it is like.  Unless the hospital get back to me with a new appointment  that means we can't.

Thanks to everyone for the love and support over the weekend, it means a lot to us. 

Sunday 26 May 2013

Not much to say

The sun is out, the sky is blue, there isn't a cloud to spoil the view, but its raining, raining in my heart. 

Before you all tell me they are wonderful words, it is a song. Can't remember who originally sang it, I have a version by Peter Skellern. 

Not much to say other than Sharon and I have hugged a lot and cried a bit.  I think that will be the way for a while.  All you readers out there should hug the ones you love whenever you can, you don't realise how important it is until you think you might not be able to do it sometime. 

Main reason for this blogpost is to test the twitterfeed and see what's occuring.

Saturday 25 May 2013

The Blog Post I Have Been Dreading For A Year

Went to see Dr Trent on Friday morning as planned after her phone call on Tuesday.  I knew from the look on her face when she called me from the waiting area that it wasn't going to be good.  Basically she said that it is almost certainly the sarcoma that is back and there is nothing they can do about it other than offer palliative care.  There is a very small possibility that all the experts are wrong and it is only an infection.  I asked her to give me odds, she declined and said "I think it is the sarcoma". I also asked her how long I have if it is the sarcoma and she had no answer for that either.  The active cells spread from my scrotum to my lymph glands.

The area that was spotted on my kidney in the last scan has also got larger. So they now don't think it is a cyst but the cancer spreading to my kidney.   

So a biopsy is still planned, at the moment it is for June 5th, but they may change that and bring it forward.  I will then have an appointment with Prof Hassan once the biopsy is done to confirm the outcome.  That will be either 7th or 14th of June depending on when the biopsy actually happens.  The facial expressions of Dr Trent and Dr Pratap, who I saw on the way out, don't lead me to believe it is an infection though.  I am looking on the dark side.  I am not a straw clutcher.

But my positivity remains and will now be re-focused on making the most of however long I have left. I will keep writing the blog as long as the statistics show people are looking at it.  I would like to keep all the doom and gloom to myself, but I just won't be able to, so expect good, bad and weird posts.

12 months ago when they first told me I had sarcoma cancer and it was a particularly aggressive form of cancer I thought I might have to deal with dying sooner rather than later.  Then Prof Hassan said "We can beat this" and I went with him, took the chemo and fought like hell.  I'm not finished yet, but the odds the experts won't ever give seem to be against me.


 

Tuesday 21 May 2013

Hit round the head with a cricket bat

It has been a really good couple of weeks, had a PET scan, chilled out a bit and been relaxing before the onslaught of radiotherapy.  I was at a school governors meeting last night, feeling good and several people said how well I looked.

They can't see what the PET scan did though.  Just before 11:00 am I had a phone call from a withheld number.  Expecting it to be someone selling me cavity wall solar panel insulation I answered it with my usual abrupt 'Hello'.  It was Dr Trent from the Churchill.  The PET scan has shown up an area of active cells in my groin.  They may be something to do with the infection or it may be the cancer back again.  The only way they can find out is with a CT scan guided needle biopsy.  Radiotherapy has been postponed until after they can do that and get results.  I am now waiting for the call for a CT scan appointment.

I feel like I have been hit round the head with a cricket bat.  It was all going so well.  I felt so good. The light at the end of the tunnel was some bastard with a torch bringing bad news.  I have cried a bit, Sharon came home from work and we cried and hugged a bit.  I am writing this at 11:45am but wont post it until I have been able to talk to Lauren about it.  I am determined to carry on enjoying life and doing things around scans and appointments.  I have an appointment with Dr Trent on Friday morning so we can talk through everything and I can find out what happens next.  Hopefully they will get me a biopsy before then and we will know where we stand.

I am running out of positivity.  I am off out to stand on top of a hill and scream.

Back now from the top of the hill. Still feeling pretty pissed off but nothing I can do about it other than wait for the experts

Tuesday 14 May 2013

Had a great weekend and Monday.

Saturday was a farm sale and Sunday was an afternoon of art and culture at Compton Verney.  Monday was lunch with Mr & Mrs Thompson at our local, fabulous pint of Adnams and a mixed grill.  Today I have had to starve myself and go for a PET scan. The Churchill was as efficient as usual, arrived at 5:00 and was home by 8:10 having been injected with radio active glucose and scanned.

Wednesday 8 May 2013

Summers over

Still got my shorts on, they're comfortable, but it was very chilly today.  Spent the morning catching up on some governor stuff, popped out at lunchtime for a bit of a drive and to re-unite Simon with his phone.  When I called him a young lady answered and told me she had picked it up in her work car park.  Couldn't ring Simon to tell him where it was so I had to go and see him.

Feeling great at the moment.  Got to see the nurse in the morning for a dressing change and I am hoping they will declare that it can be left to heal up without any stuffing in it, getting fed up of nurses poking my scrotum. never thought I'd type that.  Things might go a bit quiet on the blog again, things are good and I am going to enjoy myself a bit before the onslaught of radiotherapy.

Tuesday 7 May 2013

Been and got some tatoos today .

I have been and got some tatoos today.  They couldn't do the designs I wanted so I have had to have 4 simple dots.  They will be using them to line up the radiotherapy equipment from 28th of this month. It is all very clever, they lined me up in their lasers marked me up with marker pen,checked they were right then tatooed me.  They also gave me a CT scan with marker dots on the tatoos so theycan see what is inside as well.

Most of the appointments are 11:00 in the morning and the rest are alll before 2:00.  So I will miss the morning rush and be back home for lunch. The radiographer who briefed me said a positive attitude makes it a lot easier to deal with, so here we go again, let's get it over with. 

Saturday 4 May 2013

Worn myself out

We were late getting up and I was feeling good. Decided to tighten up the wheel bearing on the Land Rover. It's only a little job. Got it horribly wrong and tried to do it in the drive, therr wasn't room to get the driveshaft out without demolishing next doors fence!  Put it back together, moved it and did it again. Did a few other odd jobs and now I am shattered.

It's nice to be able to do things, but I am so weak and unfit. Hopefully I will get to build up some strength and fitness before radiotherapy starts.

Friday 3 May 2013

Dr Trent Today

Saw Dr Trent today. Last time I saw her for a routine appointment I ended up in the operating theatre. Today was much better. She is happy that I am no longer swollen and radiotherapy can start.  I now have an appointment next Tuesday to be measured up and tatooed and radiotherapy will start 2 to 3 weeks after that.  So lets get the wound healed so I don't have to keep going to the nurse and I can have a bit of normality before it starts. 

We stopped for lunch at Annie's Tearoom by the canal in Thrupp and then walked along the towpath to Shipton and back. I'd love to live on a  canal boat for a while but we would have to keep the house for all our stuff! 

The sun makes life so much more enjoyable.