Colin's Funeral

The Funeral Service will be at St Paul’s Church, Worcester, on Friday 15^th January 2010 at 2pm. Family flowers only. Donations in lieu of flowers if desired, for St Richards Hospice & Kidney Cancer Research c/o AV Band, 41 St Nicholas Street, Worcester. WR1 1UW

Sadly

Colin passed away peacefully with family by his side on 23rd December at St Richards Hospice after a short battle with Septicaemia and Pneumonia. He will be greatly missed by Me, Kieran, the rest of our family and everyone who knew him and was instantly liked by virtually everyone who met him and even the Nurses & Doctors said what a nice man and fighter he was and they did everything they possibly could for him.

I will do another update as soon as I know what Colin's funeral arrangements are.

Regards

Sandy

2nd Update

Colin still has very low white blood cells and platelets. He pulled 2 Canulars out of his arm over the weekend but the nurses managed to get another one in. He now has pneumonia and fluid in one lung and is on oxygen as his oxygen levels are low without it and he is being sedated as he is very anxious and struggling to breath.

He will be moved to St Richards Hospice at some point today.

Update

Colin is in hospital in Worcester and has Septicaemia, Very low white blood cell count (the ones that fight infection) and low platelets (they stop you bleeding), he is being given antibiotics intravenously and hopefully they will do their job. I will update when I have any info but at the moment we are hoping and praying he gets through this, as we all know what a fighter he is.

Medical Assessment Unit

Colin was admitted to MAU (Medical Assessment Unit) yesterday afternoon after I called out our GP because I couldn't get him to get out of bed to go for his radiotherapy, he kept saying his back hurt, but most of what he was saying wasn't making any sense.

They took some blood and it seems he has an infection of some sort. He was dehydrated partly due to not drinking much because of his severe mouth ulcers (side effect from Sutent) so they have put him on a drip and have given him antibiotics. When I saw him early he was making a bit more sense but is still very poorly, hopefully he will improve quickly now they know what is wrong.

Radiotherapy again

Colin went to the QE on Wednesday last week for the planning meeting for his 10 Radiotherapy sessions, which start tomorrow, Fri 11th, then all of next week, Mon, Tues, Wed Christmas week and then the last one on Tue 29th just in time to start Sutent again on 3rd or 4th Jan.

He is suffering from the side effects of Sutent at the moment, the main one being a lot of mouth ulcers, which make eating very difficult so I have been a very good wife and made him home-made soup and a beef stew which I have puréed for him. This made Kieran laugh when I told him it looked like the baby food I used to make for him.

Appointments and even more appointments

After having had both Flu jabs (normal and swine) and checked that the scar from his operation had completely healed, Colin started taking Sutent again on 20th November.
On Monday 23rd we went to ROH (Royal Orthopaedic Hospital) for Colin's first check up after his Op.

When we arrived in the car park it was very windy and as Col let go of his wheels (walking aid) to put on his coat - they proceeded to go off down the car park on their own with Col trying to run after them shouting (very quietly) HELP!!!! I didn't know anything was wrong as I was getting his phone out of the car for him until I saw him trying to catch up with them (not very successfully) HA HA!!! Thanks to a nice lady who was crossing the car park they didn't hit any cars on their travels and the man in the security cabin might have stopped them if he hadn't been laughing so much.

Anyway back to the reason we were there, first he had to go for an x-ray and then we saw the Oncology Nurse who checked Colin's reflex's - yes there were some - ha ha, she said he is doing very well and should gain muscle tone back in his thighs eventually.



We now have photos of Colin's spine and the work that Mr Stirling did to it, the first is of his spine from the back and shows the titanium bracket and the second is the side view which shows the bracket and two bright patches which are cement.



We have also been to the QE today to see Prof Nick James to discuss Colin's treatment plan and starting a course of 10 fractions Radiotherapy on the spine as soon as possible. He suggested having the Radiotherapy in the two week break between cycles of Sutent but I pointed out that that would be over Christmas and New Year and probably not a good time. He agreed with this and is arranging for a Planning Meeting hopefully for next week with a CT Scan asap and starting the Radiotherapy sessions very soon.

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.

Happy Halloween

Sorry I haven't done an update in 2 weeks but its been a difficult 2 weeks as Colin was trying to do things like walk around after his spine op. Originally we got a wheelchair from the Red Cross, but soon realised that he was never going to sit in it only use it as a walking support, so I rang the Red Cross again to see it they hired out walking frames, only to be told they didn't have any to hire but they did have one of the 3 wheeled types for sale for £10. So we loaded the wheelchair in the boot, took it back and bought the walking aid.


After a week of walking quite well with his wheels and finishing Dexamethasone (steriods) for the second time we assumed all was well.
Also I had an out patient appointment with my cardiologist, had an ECG (echo cardiogram) done, she looked at my blood test results, told me all my blood tests (liver, kidney etc) had come back normal and she was quite happy with my progress and discharged me from her cardiology.

We began talking about taking Kieran to Bournemouth as he asked if he could go to the beach there for his birthday, I had found a couple of B&Bs with vacancies, this was when I noticed Colin was not his usual self and didn't seem to want to do much. I assumed he had done to much walking since being discharged from hospital and was exhasted so didn't push him to do anything and left him to rest.

He managed to get up on Sunday, as we were going out for lunch with a friend. He had very low blood pressure and I suggested he didn't take his blood pressure tablets, also when vomited slightly before going out and just after starting his meal (which he didn't eat). Tuesday he came downstairs for Kieran's Birthday cake, but only because I insisted and we had visitors. (I took Kieran out for lunch with his Grandma, Grandad & Auntie Rachel to Bridges Carvery, then on Wed took him & a friend to see 'UP' at the cinema)

By Thursday he had vomited a couple of times since Sunday and hadn't taken any blood pressure tablets and seemed to be quite depressed and didn't what to eat or doing anything including answering text messages from friends. I was starting to worry so I phoned his Sister Rachel to see if she would come and see him and give me her opinion as to whether I should get the Doctor out to see him.
Rachel came round Thursday afternoon and came to the same conclusion as I had, so I called to Doctor and arranged a visit for Friday.

During Thursday morning I had made some soup (which Kieran said was really nice) and cooked a stew, which got eaten by Rachel, Laura, Kieran and Myself and was very nice.

The Doctor came on Friday morning and explained that Colin had stopped his Steroid's too quickly and the way he was was a reaction to that so she has reintroduced the Steroid's at 2 a day and has given him an anti-sickness tablet (Domperidone) 3 times a day.

Thankfully they seem to be working and he has eaten today and has been up out of bed and even had a shower and been to the pub. The only downside is he is snappy again (due to the steroids) but I can deal with that much easier than him being in bed not wanting do anything or see/speak to anyone.

Appointments, Appointments

Now we have to remember my appointments as well as Colin's.

Good job we both have phones with calenders on them otherwise we would miss things.

Colin had an appointment with Dr P at the QE on Thursday, who was pleased that his spinal tumor was dealt with so quickly by the ROH.

At present he has suspended Sutent until the wound on Colin's back has healed and once he has received details re: operation will decide if Radiotherapy is needed.

Colin is still recovering quite well, he can't walk very far but has got a wheelchair if he needs it.

One thing we have noticed is that he seems to have shrunk as I am now taller than him - sorry Sue he is still a few inches taller than you :)

Home Again

Colin came home yesterday.
He's legs are getting stronger each day and he can walk a little further each time, he is still in pain but the pain killers are working this time which is a relief. He slept for 8 hours last night which is the longest he has slept in over 2 weeks, so that's a good sign that he is getting better :-) and has started to reduce his steroids again.

Also Colin's big little sister Sue will be appearing on ITV1's This Morning programme today to talk about breast cancer and her own Blog Welcome to Sue's World with Dr Chris sometime between 10.30 and 12.30. Go Sue x

Video from 'This Morning' is now on You Tube http://www.youtube.com/watch?v=b12L4jhlgV4

Post Op

Colin had his spinal operation yesterday and as far as we know it all went to plan. He seems to be recovering quite well and has some feeling back in his right thigh already which is a good sign. He has an epidural in place at present so isn't in any pain.



Here is an example of a titanium bracket on the spine. Colin has had something similar to this done.







What Colin's back looks like at present, the top bit is just holding the epidural tube in place.
The bottom bit is where they operated.










And he has a web shooter (like spiderman)







On a more cheerful note Sue has been invited on This Morning to talk about Breast Cancer and her Blog with Dr Chris as it is Breast Cancer Awareness Month

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.

Royal Orthopaedic Hospital, Birmingham

Colin is now an in patient at the above due to severe back pain, numbness in his thighs and not being able to stand for long or walk very far. He was admitted at 5.30pm and had an MRI scan at 6.30pm. We should have some results and an idea of what is going on tomorrow so I will update as soon as I can.
At least I might get a good nights sleep tonight as I won't have to get up an administer pain killers during the night, someone else will be doing that and getting paid for it ;-)

Health Update

Where do I start????

We came back from camping on 2nd Sept, then on 4/5th Sept I had a minor heart attack and ended up being in hospital until 10th Sept during which time I had an angiogram and angioplasty done. While in hospital I had stomach/abdominal pain, which after a CT and utrasound scan they couldn't find a reason for except maybe it was the tablets I was taking, so they told me to stop one of the tablets(cholesterol) and discharged me on the Thurs day afternoon. By the Friday afternoon I was in so much pain I went to my GP and she sent me straight back to A&E with a letter for the Surgical Assessment Unit, they did an X-ray, changed a couple of my tablets and discharged me on the Sunday afternoon (still with stomach/abdominal pain, but with soluble paracetamol for the pain). Even now I am still getting pain and nobody seems to know why or what is causing it but it is bearable pain now, I just wish it wasn't there at all.

Now for the update on Colin.
He had a CT scan on Mon 7th Sept and an outpatient appointment with Dr P on 24th, but in the middle of these, last Thursday his back started hurting and by Friday he was in bed and pinching my paracetamol. On the Saturday his left arm and right leg weren't working properly so we decided he should start taking his steroids(dexamethasone) again and we found so Co-codamol. On Tuesday he managed to get up with some help and go to GPs and she prescribed Co-dydramol and suggested upping his steroids to 2 a day. We had a lift to the QE on Thursday to see Dr P. When we saw him he explained that the CT scan showed some abnormalities on the lower spine and he has requested a bone scan, he has now started Colin on Sutent, prescribed Tramidol for the back pain and will see him again in 3 weeks.

None of the painkillers seem to be doing anything so when I went back to see our GP on Friday she prescribed Oramorph (liquid morphine) and upped the steroids to 4 a day. Hopefully this will help in time but at present Colin is in bed and still in a lot pain.

Back now - sorry it took a while .....

We had an eventfully camping holiday in Saunton, North Devon.
To start with the ground was full of stones, so we bent more tent pegs than not, but we did end up with something resembling Worcester Catherdral




The weather wasn't great but we did have a couple of sunny days, went to the beach and even went bodyboarding (no photos of me, hurray) only Colin, who spent most of Saturday in the sea.




As I said earlier the weather wasn't great, especially the strong winds which managed to break one of our tent poles (not impressed as it was a brand new tent), but after Sue and I did a blue peter repair job on it I think it was a lot stronger than before.


We had some friends join us on the Friday night for the weekend, found a shop that sold Cornish Rattler Cyder, so not the most relaxing holiday I've ever had, but it was fun.

On the way home we took the tent back to the shop and got them to exchange it for a different one.

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.

Race 4 Life - Finished in 52 mins

Well I did Race for Life on Sunday in the glorious sunshine and as you can see I did it in 52 mins side by side with my friend Mel (that's 3mins faster than we did it last year).

Didn't get sunburned thanks to my sister-in-law Rachel who was a volunteer and supplied anyone and everyone with sun cream by the starting line, Thanks Rachel :-).

Wyvern FM were there as usual and this year there were the Nivea Boys to help us with a short workout.

I have raised £351.50 in sponsorship this year which is my highest amount yet.
Between Mel, Jess, Ness, Hayley, Claire and myself we have raised £802.50. So a BIG BIG BIG thanks to everyone who sponsored us.
If you haven't sponsored me you still can at http://www.raceforlifesponsorme.org/colswife

Local Radio Interview...

Well I went to the Wyvern FM station yesterday to record an interview about why I am doing Race for Life. I think it was OK.
I was shaking when I got there and was still shaking when I got back in the car afterwards, so I'll have to wait and see what I sound like and if I waffled when they play it or email me the MP3. Hopefully, everything I said came out OK !!!! and yes I did mention the names of the friends doing Race4Life with me - Melanie Williams, Jessica Williams, Vanessa Hill & Hayley Bennett, you all got a mention.

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 :-)

Recovering Slowly

It's a week since I picked Col up from Manchester. He is still tired but has been out for a couple of walks, which helps because if you don't do anything even though your exausted you still can't sleep so gentle exercise seems to work well. His skin is still very dry and itchy but is improving slowly and the anti-histamine stops the itching.
I'm off to Birmingham Symphony Hall on Monday night to see John Barrowman in concert ;-), which should be a good night!!!! oh and I've paid the balance of our holiday this year (I forgot last year).

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.

Treatment day has arrived

It's 5.30 on Monday morning, doesn't time fly it, doesn't seem like 10 days since we had the start date for this. Col should be nice and clean though as he has had to use Hibiscrub (anti everything hospital wash) in the shower for the last 5 days in preparation for the PICC line that they will be putting in later today (the tube via which they pump the drug). Nearly time for me to do the 2 ish hour drive to Christies. No traffic on M5 & M6 today please, Oh it's monday morning no chance of that :). Thanks to everyone for your support at this time, oh and I will ring or text if I need help with anything ;)

In Loving Memory of David

Its a year today (8th April) since Colin's brother David died. He is greatly missed by family, friends and everyone who knew him. I am sure most people will still miss his sense of humour and grumpiness. I know I will :).

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!! :-)

Benefits Minefield!!!!

We have just entered the minefield of benefits, which is totally alien to us as we have both always been employed up until Dec 2008 when Colin was made redundant. Colin has been granted DLA (Disability Living Allowance) and he has applied for ESA (Employment Support Allowance) and I will shortly be re applying for Tax Credits as I was not entitled to any between Jan & Mar. The problem we have is knowing which benefits we are entitled to and where to apply for them. So if anyone has any suggestions please let us know. :-)

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.

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”.