Steroids & Sutent

The steroids seem to be doing their job and Colin is back to his normal self (normal as far as Colin & steroids are concerned).

His back has healed well and his walking is improving tremendously (he can almost keep up with me now) which means I don't have to keep stopping and waiting for him to catch me up ;)

Now that his back has healed and he has had his flu & swine flu jabs he should be able to start taking Sutent again, just waiting to hear from Dr P if that's OK.

Operation Time

Since my last update on Thursday Colin has had lots of scans and x-rays and has been discussed between Dr P at QE (Queen Elizabeth Hospital) and Orthopaedic Consultant, Mr Stirling at ROH (Royal Orthopaedic Hospital).

Tomorrow he will be going to QE for Embolization of lower spinal area, to prevent too much bleeding which is the main risk from RCC then on Wednesday Mr Stirling will operate on the tumors on the lower spine removing them, then will rebuild the spinal bone with titanium and cement so column doesn't collapse hopefully leaving Colin pain free.

I am now feeling much better and able to do a bit more (not too much though) and I am allowed to drive again which make life so much easier as I don't have to rely on/ask people for lifts any more.
I would like to say a BIG Thank You to all the people who gave me lifts etc It was much needed and appreciated.

Now for the amusing bits: While I was in hospital Colin brought in the mains charger for iphone/ipod for me to charge my ipod, when I went back to hospital I knew I didn't take it with me. We had been looking for it for 2 weeks since then and really needed it on Thursday so Colin could charge his phone whilst in hospital, still couldn't find it so on Friday I bought a new one. Within an hour of getting home from shopping - low and behold what did I find in a carrier bag on the floor, YES the charger that I had been looking for everywhere.
Also because I couldn't drive last week I did an online shop at ASDA to be delivered between 4 & 6 pm on Thursday, not a problem you might think. But then we get informed that the Ambulance will be coming for Colin between 3 & 7 pm on Thursday, so what are the chances of them turning up at the same time???
Well just in case that happened I asked my Mum to come round for 4 pm, good job I did as Ambulance arrived at 4:10 and ASDA delivery arrived at: you guessed it 4:15.

So amusing things do happen even when you don't expect it and they make you laugh and that is a good thing as we all need to laugh occasionally, especially in this family.

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!!!!!

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.

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.

Enjoying the sunshine

It has been 3 weeks since Colin finished his HD IL-2 treatment and he is looking more and more like his old self as the days pass, which is brilliant as he hasn't looked this healthy for at least a couple of years.
I will be doing Race for Life in 2 weeks time, so I am hoping this weather is here to stay for a while. If anyone wants to sponsor me please feel free to go to my sponsorship page http://www.raceforlifesponsorme.org/colswife
While I'm on the subject of Race for Life, I had a surprise phone call the other day from Wyvern FM (our local radio station) asking if they could record an interview with me about why I am doing Race for Life following an email I sent them a few weeks ago. I'm a bit nervous about this because I've never been interviewed before but hopefully it will be OK :-)

Round 1 Part 2 - Day 5

Col was awake most of the night, last night. This morning he had the "evil" nurse who stresses him out, then does his Obs and says his pulse is too high. After the shift change his pulse was low enough for dose 8 at 3pm. He should get at least one more dose in (hopefully 2 more) before they kick him out and I get to drive to Manchester again to pick him up - no visits to football stadiums this time though Kieran, my purse hasn't recovered from the last time yet.

Round 1 Part 2 - Day 4

Col was sick last night but thinks it was the water, obviously Manchester water is different to Worcester water. He had dose 6 at 9.30am and was out of it until 4.30pm, had dose 7 at 8.30pm and hopefully they will continue over the weekend and he will be able to come home on Monday. Kieran will hopefully stay in his own bed all night tonight and I can sleep without being kicked.

End of Round 1- Part 1

I picked Colin up from Christie's yesterday afternoon and then took Kieran to see where Manchester United play as it is not very far from Christie's and Kieran supports them. He was very excited and couldn't wait to go. It was an expensive afternoon as when we got there he spotted the club shop - a shirt, baseball cap, football & shinpads later and my purse was a lot lighter but he was happy and we will (hopefully) never have to go again.
Colin was very tired when I picked him up as I don't think he's had much sleep in the last week and wasn't telling me the whole story of how he was when I was phoning/texting him during the week. Hopefully a week at home resting will be enough for him to regain his strength in time for round 2 starting on 4th May.
It's a good job we have a basement with a spare bed in it, as Colin couldn't get comfortable last night so after an hour and a half I decided to go downstairs so that we could both get some sleep as I had to go to work today, I think I will go straight downstairs tonight :-)

Treatment 1 - Day 6

Still going strong. Colin has now had doses 10 & 11 but that's it for Round 1 as he needs at least a week for his body to recover before he starts Round 2, which he will be starting on May 4th. So it looks like i've got a drive to Manchester and back tomorrow to pick him up (at least it's not a 6am start this time). Mind you he is being discharged at 9am in the morning. I have warned him I won't be there at 9 to pick him up though.

Treatment 1 - Day 5

Colin had dose 8 at 2am then dose 9 at 11.45 all going ok apart from Colin now has constipation, hopefully some sennacot will sort that out and he will get dose 10 this evening. I have received the polo shirts I ordered for race for life and am now planning what to put on them. If anyone wants to sponsor me my link is http://www.raceforlifesponsorme.org/colswife which is organised by Cancer Research UK. Hopefully we will be picking Colin up from Manchester on Sunday as Kieran is looking forward to seeing his Dad and has missed him this week. Again thanks for all your support and good wishes.

Treatment 1 - Day 4

Not quite as good a day today:-(. Colin didn't have a very good night last night and has had a high temperature and pulse (side effect) most of the day so didn't get to have dose 7 until about 15.30 today but hopefully will be able to have no 8 around midnight if everything is normal.
Colin asked me to thank everyone for their messages by E-greeting, Text and via me. Well I think that's what he said anyway, his voice is very croaky so its difficult to understand him, but that's nothing new!!!.
I had a good nights sleep last night - got the bed all to myself with no 8 year old visitors this time, can we do the same tonight please Kieran!!!!

Our history so far

It all started in Nov 2003 when he was admitted to hospital and they discovered he had a 5cm mass in his right kidney. Within 3 weeks he had had a Radical Nephrectomy (removal of kidney) and it turned out that he had "Clear Cell Renal Cell Carcinoma". As far as we knew all the cancer cells were contained within the kidney and they were 90% sure that none had escaped, so no further treatment was recommended, apart from regular scans.

That was until in Jan 2007, when at a 5cm mass was discovered in his chest, just above the heart. In March 2007 he had a Thoracotomy (chest operation) to see if they could remove it, but they could only “de-mass” it as it was between the Aorta & left pulmonary artery. The biopsy results confirmed it was Metastatic Renal Cell Carcinoma (secondary kidney cancer).

Another scan in May 2007 showed a couple of masses in his chest and a few small nodules in his lungs. He was prescribed “Sutent” which was refused by our PCT so he was given “Interferon Alpha” which he started self injecting in June 2007. This initially worked, reducing the masses and keeping them stable for 18 months, until Jan 2009 when a scan showed that they had started growing again, and there were new nodules in both lungs.

His consultant reapplied for “Sutent” which again was refused by our PCT. So we investigated drug trials, one of which was “high dose Interleukin-2” "HD IL-2" which is available in Manchester and discovered that Colin is an ideal candidate for this, but it is not a very nice treatment. Then in March 2009 the PCT agreed to fund “Sutent” for Colin, which is brilliant news.

We have decided to go for the “HD IL-2” treatment in Manchester first and keep the option of “Sutent” available for use if he doesn’t respond very well to the “HD IL-2”.