Away Camping...

Radiotherapy is over and done with, as because the tumours are on the brain they only like to use Radiotherapy once as any more could kill brain cells ( and as we all know Colin didn't have many to start with :-) ). He has been advised to wean himself off the steroids by lowering them by 1 tablet every five days unless any of the symptoms reappear and in that case he can increase them again. Hopefully the symptoms won't reappear and he will go back to his old self (mainly his tolerance).
He has been in touch with Dr P in Birmingham and will be having a CT scan shortly and then should be starting on Sutent, but before that we are going on holiday.
The holiday is a 10 day camping trip to Saunton, North Devon with his sisters Sue & Rachel and our nieces Laura & Holly so we should have a great time. Kieran will have someone to play with as Holly and him get on well and if Sue & Colin get to grumpy Rachel & I will leave them to it and go off somewhere with the kids.
Colin is like a big kid himself at the moment buying camping stuff and is very excited, partly I think because it's our first camping trip with Kieran.
If I survive the next 10 days with that lot it'll be a miracle, but it might just be fun and give us time to chill out, I think we need it after the last few weeks!!!!!

Round of Radiotherapy over

Colin has finished his round of Radiotherapy and now has a two week wait until he sees a Consultant at Worcester, he has an Appt for 21st August.

As well as the above Appt he will also be having a CT Scan of his chest in Birmingham to see if the HD IL-2 treatment had any effect and as a baseline for starting Sutent. Hopefully the scan will be in two weeks but not on the 21st ;) and then he will have an outpatient Appt with Dr P.

That's if I don't deal with him first, as his tolerance levels are very low and he is snapping at everything and can't handle any change in plans even very slight ones. I am having to try very hard not to snap back, but Kieran doesn't understand this and keeps getting told off by Colin for minor things - poor child.

I did mention this to our GP today and she said it can be a side effect of the Dexamethasone (steroid) his is on, so I will try and put up with it and not snap back/or punch him :-/

Radiotherapy Has Started

No more trips to Manchester now then.

Went to Cheltenham yesterday and saw a really helpful Doctor who not only saw Colin at very short notice but also spoke to Dr P from QE, Birmingham and discussed to best course of treatment for Colin. It was decided that the best course of treatment would be Radiotherapy.

So he had his first lot yesterday at 5pm and the next at 11am today followed by 3 more on Monday, Tuesday & Wednesday next week.

While we were in Cheltenham we went to see an old friend Rob who has a pub down there called the Somerset Arms, which was only 5 mins away from the hospital.

Not only does Colin have to go the Cheltenham 5 times but we also have to go there on Sat & Sun as Kieran is camping with Cubs at the Morgan Centenery Festival on Cheltenham Racecourse this weekend, so I think we will have had enough of the place by Wednesday.

Off to Cheltenham

Treatment in Manchester has been suspended until Colin's head has been sorted (that could take a while ;-)).

After a lot of hassle - Colin not being referred to oncology by the hospital last week and us having to go and ask GP on Monday to refer him, I managed to get Colin an Appt with an Oncologist in Cheltenham for Thurs at 12.30.
They originally offered him an Appt for Wed 5th Aug, which I said was not acceptable and that he needed to be seen this week and hey it worked. I can be very persuasive when I need to be.

I will try and update this later with any more news.

Manchester cancelled....

We have not gone to Manchester today for Colin's CT Scan.

On Wed Colin went to see our GP as he has been having problems with his left arm, his eyesight and he keeps forgetting words or what he is trying to say.

Then at 9 am yesterday she phoned and asked me to take him to MAU (medical assessment unit) at our local hospital so they could do a CT scan of his head.
They did a CT scan at 3.30 yesterday and it showed that he has metastasis (tumors) on his brain which are causing the problems with his arm, eye's and memory. They have kept him in overnight and hopefully he will be seeing an Oncologist today to discuss the findings and hopefully a treatment plan.

Butlins, Minehead

We had a nice week away in Minehead, I think we picked the right week for good weather. Colin even went on one of the rides on the funfair.
We went down to Sue's on the Sunday and stayed the night as the holiday was Mon-Fri.


While we were at Butlin's Kieran went on the K2 Experience (Britain’s highest outdoor climbing structure)





It has low ropes, high ropes, leap of faith, zip wire, climbing wall and an absail, he enjoyed the whole thing except the absailing.


After a fairly relaxed week we headed back to Sue's. Because we got to Sue's early afternoon we took a trip to Clark's Village at Street. (which hit the purse hard but saved quite a bit too). We took Holly to her scout camp and on the way back we stopped off at a pub in North Fitzwarren called The Allerford Inn and had a really nice meal at a very reasonable price.

June Update

Colin went to see an ENT (ear, nose & throat) consultant today, had camera put up his nose to look at his throat. Result was one of the tumors is pushing on a nerve cluster in his chest which is affecting the vocal cords on the left paralizing them. The consultant was suprised at how well Col could talk considering the above. Hopefully the HD IL-2 treatment in Manchester will shrink the tumor that is causing the problem.

We will be off to Manchester again on 24th July for Col’s CT Scan to see if the treatment has worked.

Before that though we are off to Minehead (Butlins) on Monday for a well deserved holiday.

In memory of Colin’s brother David, Church Organist, a MEMORIAL CONCERT will be held on Sunday July 12^th 7.30pm. at Our Lady Queen of Peace, Bransford Road, St. John’s, Worcester.

The recital will be given by a very talented young man, James Luxton who is Organist at Sts Mary & John’s Church in Wolverhampton and is also Organ Scholar at St Chad’s Cathedral in Birmingham.