Hi and Welcome....
The reason for my blog is that Colin had Metastatic Renal Cell Carcinoma (secondary kidney cancer). In addition to this, his eldest brother David died in April 2008, 5 weeks after being diagnosed with Laryngeal Cancer and his elder sister Sue was diagnosed with Lobular Breast Cancer in March 2009. All that said, I am still smiling and trying to be up beat about everything because if I wasn’t I don’t think I would cope as well as I have so far. Sadly Colin passed away on 23rd Dec 2009.
If you would like to follow or comment on this blog, then please feel free.
Saturday, 26 December 2009
Wednesday, 23 December 2009
Friday, 18 December 2009
Wednesday, 16 December 2009
Thursday, 10 December 2009
Thursday, 26 November 2009
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.
Wednesday, 18 November 2009
Saturday, 31 October 2009
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.
Saturday, 17 October 2009
Tuesday, 13 October 2009
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
Thursday, 8 October 2009
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
Monday, 5 October 2009
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.
Thursday, 1 October 2009
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 ;-)
Friday, 25 September 2009
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.
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.
Thursday, 20 August 2009
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!!!!!
Friday, 7 August 2009
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 :-/
Friday, 31 July 2009
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.
Thursday, 30 July 2009
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.
Friday, 24 July 2009
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.
Wednesday, 22 July 2009
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.
Friday, 26 June 2009
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 12th 7.30pm. at Our Lady Queen of Peace,
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
Tuesday, 16 June 2009
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
Tuesday, 2 June 2009
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.
Sunday, 31 May 2009
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 :-)
Saturday, 16 May 2009
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).
Sunday, 10 May 2009
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.
Saturday, 9 May 2009
Friday, 8 May 2009
Thursday, 7 May 2009
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.
Wednesday, 6 May 2009
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.
Tuesday, 5 May 2009
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.
Monday, 4 May 2009
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.
Monday, 27 April 2009
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 :-)
Saturday, 25 April 2009
Thursday, 23 April 2009
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!!!!
Wednesday, 22 April 2009
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 :-).
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 :-)
Tuesday, 21 April 2009
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:
He is on Ward 11.
Monday, 20 April 2009
Wednesday, 8 April 2009
Saturday, 4 April 2009
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.
Thursday, 26 March 2009
Monday, 23 March 2009
Wednesday, 18 March 2009
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.
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”.