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 :-/

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 :-)

End of Round 1 - Part 2

Col didn't have any more doses after number 8 so I went and picked him up today. His sister Rachel came with me, it was nice to have company other than Kieran in the car. Col was very tired again when we picked him up but didn't look quite as drained as he did last time.
I have been relegated to sleeping in the basement again as he has come home with a cough like he did last time (good job we still have the spare bed).
Now its a 5 week wait until his CT scan to see if its all been worth it. Fingers etc crossed that it has worked, only if it has worked it means going through it all again in a couple of months, but it will be worth it in the long term.
Thanks to everyone for their support & e-messages.

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.

Round 1 Part 2 - Day 3

Col had a good night last night. He had dose 4 at 5:45am and has just had dose 5 at 9.45pm "could have had it an hour and a half ago, but they were either too busy or forgot me" was the text I got. I said they must have been busy as they couldn't forget Col, that's an impossibility.
I don't think I'm going to get the bed to myself at all this week as Kieran couldn't get to sleep last night in his own bed and is asleep in my bed now. I think he is missing his Dad although he won't admit to it, but that's 8 year olds for you.

Round 1 Part 2 - Day 2

Thanks to everyone who sent us anniversary wishes.
Colin had the 2nd dose at 1am and then had to wait until 6pm for the 3rd dose as his pulse was to high - he really should stop watching those nurses!!!
I didn't have any visitors last night as Kieran's pillow didn't attack him this time.
Rachel & Laura came round for tea tonight, which was really nice as adult conversation is needed occasionally (I was talking about Laura) when the only company you have in the evening is an 8 year old.

Round 1 Part 2 - Day 1

Colin has his first dose of HD IL-2 at 12 noon today and it took 4 hours for some mild side effects to kick it which were rigors, high temperature and high pulse. His next dose should be around 8pm if everything is back to normal, but after speaking to him I think it will be around 9 or 10pm.
Its our 19th wedding anniversary today and the first time we haven't been together which feels very strange.
I had a small visitor call Kieran at 4am this morning because he was being attacked by his pillow in his dreams.
I was very good when I got home from work and mowed the lawn as Colin didn't do it at the weekend ;-) and it was getting very long.

If anyone wants to send Colin an e-greeting here is a link:
http://www.christie.nhs.uk/egreeting/default.aspx

He is on Ward 11 again

Seconds out - Round 1 Part 2

Here starts another week of worry/anxiety!!! I took Colin to the train station earlier as I'm making him catch the train to Manchester this time - only joking he is catching the train because it's a Bank Holiday and the traffic will be horrible. He has recovered fairly well from round 1, apart from his skin itching due to using the hibiscrub, I think he will be happy when he can stop using it.
They say the 2nd lot is worse than the first, here's hoping its not!!! fingers etc. crossed.
On the plus side I get to sleep in my own bed for the first time in over a week which will be strange.
I will try and update my blog each day with how Col is doing so watch this space.

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!!!!

Treatment 1 - Day 3

3 more doses done, he's now had 6 out of the 14 and only had mild side effects - rigors and vomitted once last night. So so far so good, hopefully it will stay that way.
Thanks for all your messages of support they are greatly appreciated.
Hopefully I won't get woken up by Kieran tonight as I'm not used to being woken up at 4am, 6.45am is quite early enough thanks :-).

Treatment 1 - Day 2

Well Colin has had 3 of the 14 doses of HD IL-2 and so far hasn't had many side effects, which is a good thing and hopefully will continue.
I thought I would have the bed all to myself (no-one snoring next to me) while Colin is in Manchester, but no I get woken at 4 this morning by Kieran asking if he can sleep in with me because he had a nightmare and guess what - he snores too just my luck :).
I will up date my blog as and when I hear from him & have a spare 5 mins :-)

Treatment day has arrived - Part 2

Finally left home at 6.30am (I was ready at 6am). The journey on M5 & M6 was fine, no hold ups going north, I'm very glad we weren't going south though. Got to the M56 at about 8am and that's where we hit the traffic, it took us 45mins from there to get to Christie's. This time we actually found one of the patient/visitor car parks with spaces so parked up and paid the £2.50 for up to 8 hours parking (not bad for an NHS car park).

We then went to find the Day Ward, where Colin had his PICC line ((Peripherally Inserted Central venous Catheter) in plain english the tube they use to administer the drugs) inserted and an X-ray to make sure it was in the right place.
This was all done by 11am, then we were informed they were just waiting for a bed for Colin. After an hour of waiting they said we could go and get some lunch and they would ring us when they had a bed available.

We went for a walk and found a Subway, so had lunch there then walked back to the hospital, sat in the garden there for a while in the lovely sunshine. Still no bed so decided to go to the car and have a nap (5am start remember).

At about 4.30pm Colin went back to the hospital to see if there was any news on a bed and was told there would be one available at about 5.30pm, so we did a quick shopping trip to Sainsbury's to get squash etc. and then went up to the ward and his room still wasn't ready. He eventually got into his room at 6.10pm, just in time for tea.
I left at 7pm and did the lovely 2 hour drive back home.

If anyone wants to send him an e-greeting here is a link:
http://www.christie.nhs.uk/egreeting/default.aspx
He is on Ward 11.

There and back again...

We drove up to Manchester on Wednesday, arrived about 6pm, found Luther King House, the B&B we were staying at, dropped off our stuff and went to find curry mile. On the way we stopped for a pint at Hardy's Well and then found an Indian/Thai Restaurant called Al Bilal. We decided to try something different and both ended up having Chicken Tikka Keema Lazzez which was very nice.
After a restless night we caught a bus to Christies at 8.10am as Colin had to be there for 8.30 for his CT scan. After the CT scan we went to see Prof H and had a chat about the HD IL-2 treatment and now have a start date for the treatment of 20th April. So I will be driving to Manchester again in a couple of weeks (I'll be able to do the journey with my eyes shut soon ;-) ).
Now to celebrate Colin's Birthday as he will be 45 young on Sunday and has been advised not to drink after the weekend as his liver needs to be able to cope with the treatment.

Manchester here we come ...

Well we have heard from the Prof at Christies Hospital, Manchester and Colin has an appointment at 8.30am on Thurs 2nd April for a CT scan and meeting with Prof H about the HD IL-2 treatment which they hope to commence on 20th April. So its off to Manchester on Wed night for us as the appt is at 8.30 in the morning and trying to get there for 8.30am would be a nightmare on a Thurs morning. M5 and M6 before 8.30, I think not!!!! The Hotel is only £38 for the night including breakfast, a 5 min bus ride from the hospital and a short walk to Rusholme's Curry Mile (Manchester's answer to London's Brick Lane) so that's tea sorted for Wed night!! :-)

HD-IL2 treatment in Manchester

We have just been told that "Sutent" should be available after "HD IL-2" and we should hear in the next 2 or 3 days from the Professor in Manchester about the "HD IL-2" treatment.
My one main concern about this is that Colin says he doesn't want me to go with him when he has this treatment and I would like to be there to support him, as from what I've read its very nasty and pushes the body to its limits and I don't want him to be on his own when going through this.