Hi All,
Vanda here to provide an update on Colin's battle.
As you were made aware by Col on his last blogg he suffered what is classed as a Grand Mal seizure on 27th Feb following the gig. We were hopeful that this was a 'one off', this past sunday he suffered a third in the early hours.
He was switched from oral therapy to a syringe driver on Monday and has been sedated to prevent another seizure happening.
Today he seems comfortable and is resting peacefully. This guy is amazing and a true fighter!
Sorry to thos of you who have been trying to make contact , either by email, phone or the blog. As Col's full time carer it is difficult for me to keep up with the overwhelming number of kind thoughts and wishes being sent, however I can reassure you all that I do make Col aware of all the well wishes and will do my best to keep you aware of events, though as you can imagine I have rather a lot to manage at the moment so please allow me time to respond when I can.
All for now
Vanda
Friday, 26 March 2010
Sunday, 28 February 2010
Sunday 28th Februar 2010
Wow - these posts are normally short due to lack of what to say, but not so today!
I nearly didn't make it on time though. My general lack of energy due to not being out of the house for more than a month (not even downstairs for 3 weeks) put paid to that.
This meant a last minute shower and a bit of a rush to the car down two flights of stairs step by step with a stick. A detour for money and petrol meant we did arrive a bit late, but it was worth is when we got there and great to see everyone ...
Guildford Posse - Adrian, Alison, Matt (nothern imposter), Ringo, Scotch
Ex-work colleagues - Rich, Chris, Kate, H, Rachel, Al
I Started the second set with the first three songs wich was great too - thanks to my stand-in bass-player, Geoff, for the loan of his guitar!
Ali Fontella
In the end, I stayed on till nearly 1am - and was one of the last to leave which was longer than expected!
All in all a great night - thanks again in particular to the Guildford crowd for making it up north!
I got home and Ross next door had stayed up to give me a piggy back upstairs - very, very grateful as I was on my last legs
Saturday
I slept really well til before lunch, then was on the phone to a friend whilst Vanda was in the room.
Apparently, I went quiet on the phone, but I was looking away from Vanda. By the time I looked back, my eyes were rolling in my head and I was shaking. I have no memory at all of this till about 30 minutes later when I woke up in bedroom surrounded by paramedics and a nurse - apparently I'd had a fit which was a little distressing for Vanda!
No indication or warning, but we guess it was due to the exertion the day before. Yesteday evening and this morning seem ok, although I am a little "dazed and confused", memory is a bit erratic (especially of the event itself) and I'm limited to one espresso a day now (booo)
Starting with Thursday, I had a practice run downstairs to get out of bed. All was slow but ok until I went to go to bed again. Unfortunately, my legs gave way on the last stair and I collapsed. Luckily I was far enough up to grasp the landing and stay up, but I fell to the floor and that meant I couldn't get up, even with Vanda's help. We had to call the emergency response unit.
After 30 minutes on the floor, someone arrived and helped me to my feet which was welcome!
I nearly didn't make it on time though. My general lack of energy due to not being out of the house for more than a month (not even downstairs for 3 weeks) put paid to that.
This meant a last minute shower and a bit of a rush to the car down two flights of stairs step by step with a stick. A detour for money and petrol meant we did arrive a bit late, but it was worth is when we got there and great to see everyone ...
Guildford Posse - Adrian, Alison, Matt (nothern imposter), Ringo, Scotch
Ex-work colleagues - Rich, Chris, Kate, H, Rachel, Al
I Started the second set with the first three songs wich was great too - thanks to my stand-in bass-player, Geoff, for the loan of his guitar!
Ali Fontella
In the end, I stayed on till nearly 1am - and was one of the last to leave which was longer than expected!
All in all a great night - thanks again in particular to the Guildford crowd for making it up north!
I got home and Ross next door had stayed up to give me a piggy back upstairs - very, very grateful as I was on my last legs
Saturday
I slept really well til before lunch, then was on the phone to a friend whilst Vanda was in the room.
Apparently, I went quiet on the phone, but I was looking away from Vanda. By the time I looked back, my eyes were rolling in my head and I was shaking. I have no memory at all of this till about 30 minutes later when I woke up in bedroom surrounded by paramedics and a nurse - apparently I'd had a fit which was a little distressing for Vanda!
No indication or warning, but we guess it was due to the exertion the day before. Yesteday evening and this morning seem ok, although I am a little "dazed and confused", memory is a bit erratic (especially of the event itself) and I'm limited to one espresso a day now (booo)
Wednesday, 24 February 2010
Wednesday 24th February 2010
It's amazing - the instant that I start to notice any pain, a whole new level of service seeks to have switched in. I'm now getting two-weekly doctors visits, district nurse every other day, MacMillan nurse every week, plus regular friends and neighbours, so its been a busy time
Sorry, I've just had a shot of Oral Morphine, so I'm struggling a bit with this ...
Thanks to those who have indicated they will be there on Friday - I'm looking forward to it and hope it wont be to strenuous an occasion so that I can stay for a while.
Anyway - really am finding this difficult (1 word per minute it seems like at the moment), so I'll sign off again til next time ...
Colin zzz
Sorry, I've just had a shot of Oral Morphine, so I'm struggling a bit with this ...
Thanks to those who have indicated they will be there on Friday - I'm looking forward to it and hope it wont be to strenuous an occasion so that I can stay for a while.
Anyway - really am finding this difficult (1 word per minute it seems like at the moment), so I'll sign off again til next time ...
Colin zzz
Thursday, 11 February 2010
Thursday 11th February 2010
29 Tablets in all today - 16 in one go this morning! Not usual, but I ran out of 2mg Dexamethasone so had to make up with some 0.5mg which I had spare - quite a bulk to hoover up!
Quite a busy week this week, hence no posting. I've had multiple visits from district nurses, occupational therapists, rehab therapists, the doctor, various equipment deliveries etc, plus a few friends sqeezed in the gaps. Quite tiring really - however, I've now got an even more specialised mattress for my bed, which circulates air through a pump to try and disribute weight and help with the bed sores. Seems this my be my biggest problem going forward as I'm already showing signs of a sore around my cocxyx.
Chair lift is now ordered and should be here within a couple of weeks, and, as the saga goes on, I managed a reasonable win over the bath hoist last night. A little uncomfortable, but I got in and out without it spitting me in any odd direction!
Sorry for the delay, but here are the final details for the gig on the 26th for those that want to attend, and the website details to donate, whether you do want to attend or not:
Quite a busy week this week, hence no posting. I've had multiple visits from district nurses, occupational therapists, rehab therapists, the doctor, various equipment deliveries etc, plus a few friends sqeezed in the gaps. Quite tiring really - however, I've now got an even more specialised mattress for my bed, which circulates air through a pump to try and disribute weight and help with the bed sores. Seems this my be my biggest problem going forward as I'm already showing signs of a sore around my cocxyx.
Chair lift is now ordered and should be here within a couple of weeks, and, as the saga goes on, I managed a reasonable win over the bath hoist last night. A little uncomfortable, but I got in and out without it spitting me in any odd direction!
Sorry for the delay, but here are the final details for the gig on the 26th for those that want to attend, and the website details to donate, whether you do want to attend or not:
----------------------------------------------------
THE NEW ORIGINALS
A public gig in honour of band bass player, Colin Robb.
Friday 26 February 2010 – 8pm to midnight.
The Railway Club, 837-843 Chester Road, Stretford, Manchester, M32 0RN.
FREE ENTRY: The band request that charitable donations be made to Cancer Research UK.
A collection will be made on the night but we would encourage you to donate online before the event at www.bmycharity.com/theneworiginals where gift aid can also easily be applied to your donation. Thank you.
----------------------------------------------------
THE NEW ORIGINALS
A public gig in honour of band bass player, Colin Robb.
Friday 26 February 2010 – 8pm to midnight.
The Railway Club, 837-843 Chester Road, Stretford, Manchester, M32 0RN.
FREE ENTRY: The band request that charitable donations be made to Cancer Research UK.
A collection will be made on the night but we would encourage you to donate online before the event at www.bmycharity.com/theneworiginals where gift aid can also easily be applied to your donation. Thank you.
----------------------------------------------------
Remember, there are no tickets for this event, it is completely free, but we are asking for a donation before, during or after the event if you can, although this is not mandatory. You can of course donate even if you are not coming to the gig.
I hope to be taking some part in the precedings - maybe playing a song or two - but otherwise my stand-in is more than capable of keeping things going. I'll definitely be there as long as I'm able.
Anyway, bye for now!
C x
Tuesday, 2 February 2010
Tuesday 2nd February 2010
My hospital bed is still pleasing me. It's definitely more comfortable than my original bed and is doing a good job of relieving the inevitable pressure sores!
The padded loo seat is generally a success too, but the other devices less so, so far. I'm fighting a battle of wills with the inflatable bath seat. It is a substantial inflatable cubewhich fills the bath from side to side and has suckers on the bottom to keep it in place. The idea is that you inflate it, climb into the bath and sit on it, then let it down. You have your bath lying on the deflated cube, then when you are ready, you reinflate it and you end up sitting upright on the inflated cube and it's easy to get out of the bath again.
All good in theory!
Trouble with mine is that while I'm in the bath, the suckers always slip roundso when I inflate the cube to get out, the device partly raises me up and partly forces me into the other side of the bath, thus trapping me beneath the fitted bath handles. Not sure who's going to win this battle yet!
I've decided that a stairlift is a good idea. The comfort of the bed is meaning that I'm not getting up much at all, and adding the stailift would at least take away any trepidaion with going up and down the stairs so I might do it more routinely.
For those who are intrested, I missed the Tax Return deadline and I am now waiting for the riders in big black cloaks, boots and swords to arrive to cart me off to debtors prison in a dark and damp cell, hung up by my ankles next to Dick Turpin or someone like that ....
How am I generally?
Well I'm still feeling ok, although my lack of strength and ability is definitely deteriorating by the week and this is really having an impact. After the trip to the Hospice last Thursday I really struggled to get up the steps at the front of the house - it was literally one at a time with a rest in between - the worst its ever been. The did give me a walking stick though which has helped.
My voice quite often drifts into huskiness, as some of you may have noticed. Apparently this is quite likely to be caused by the lung cancer, as the voice tubes get quite close to some of the lung mets and can get squeezed. Odd that it doesn't happen all the time though, sometimes my voice is still quite strong - seems as though it's probably not caused by tiredness though.
Anyway, that's quite a mammoth posting, so time for a kip methinks!
C x
The padded loo seat is generally a success too, but the other devices less so, so far. I'm fighting a battle of wills with the inflatable bath seat. It is a substantial inflatable cubewhich fills the bath from side to side and has suckers on the bottom to keep it in place. The idea is that you inflate it, climb into the bath and sit on it, then let it down. You have your bath lying on the deflated cube, then when you are ready, you reinflate it and you end up sitting upright on the inflated cube and it's easy to get out of the bath again.
All good in theory!
Trouble with mine is that while I'm in the bath, the suckers always slip roundso when I inflate the cube to get out, the device partly raises me up and partly forces me into the other side of the bath, thus trapping me beneath the fitted bath handles. Not sure who's going to win this battle yet!
I've decided that a stairlift is a good idea. The comfort of the bed is meaning that I'm not getting up much at all, and adding the stailift would at least take away any trepidaion with going up and down the stairs so I might do it more routinely.
For those who are intrested, I missed the Tax Return deadline and I am now waiting for the riders in big black cloaks, boots and swords to arrive to cart me off to debtors prison in a dark and damp cell, hung up by my ankles next to Dick Turpin or someone like that ....
How am I generally?
Well I'm still feeling ok, although my lack of strength and ability is definitely deteriorating by the week and this is really having an impact. After the trip to the Hospice last Thursday I really struggled to get up the steps at the front of the house - it was literally one at a time with a rest in between - the worst its ever been. The did give me a walking stick though which has helped.
My voice quite often drifts into huskiness, as some of you may have noticed. Apparently this is quite likely to be caused by the lung cancer, as the voice tubes get quite close to some of the lung mets and can get squeezed. Odd that it doesn't happen all the time though, sometimes my voice is still quite strong - seems as though it's probably not caused by tiredness though.
Anyway, that's quite a mammoth posting, so time for a kip methinks!
C x
Friday, 22 January 2010
Friday 22nd January 2010
Here I am sitting in my bed. I've nearly finished my Tax Return, but as usual I'm cutting it fine - I always forget that I need annual interest statements from my banks and they always come back with "5 working days" which drives me nuts!
In fact, in today's computerised world, I resent the banks as being the only organisations that still quote in "working days" - its not as if computers go to bed now is it! It makes me bad!
Anyway, no time for grumbling ....
I wanted to mention the charity gig that the band is doing as a testimonial for me. All proceeds to Cancer Research UK - I'll include the donation site in the next post. I'm aiming to be there and also hoping to get up and do a song or two, but I also have a stand-in to cover the rest.
The gig is on the 26th Feb at the Railway Club in Stretford, Manchester. More details to follow. Hope to see you there!
That's it for now,
Col
In fact, in today's computerised world, I resent the banks as being the only organisations that still quote in "working days" - its not as if computers go to bed now is it! It makes me bad!
Anyway, no time for grumbling ....
I wanted to mention the charity gig that the band is doing as a testimonial for me. All proceeds to Cancer Research UK - I'll include the donation site in the next post. I'm aiming to be there and also hoping to get up and do a song or two, but I also have a stand-in to cover the rest.
The gig is on the 26th Feb at the Railway Club in Stretford, Manchester. More details to follow. Hope to see you there!
That's it for now,
Col
Monday, 18 January 2010
Monday 18th January 2010
Late as usual, but this past week has been quite busy with medical appointments. We're off the disease-related stuff now, and onto palliative care physical stuff.
I had my new hospital bed delivered last Tuesday against the odds. We were still snowed in, and the delivery guys didn't fancy driving down the hill, so, amazingly, they constructed a contraption of all the bed parts and wheeled id down the hill on its castors through the snow, which I thought was beyond the call of duty - very impressed!
Bed has mad a great difference. the mattress seems similar to my existing one, but definitely cushions the potential bedsore areas better than mine did. It's also great for lying on my back - raising the head and legs is so much more comfortable, and also sitting up to eat or watch telly is good too.
Wednesday I saw the Orthopedic Therapist, and she came with a catalogue of a huge set of devices, all designed to help. I've already got an inflatable bath cushion to help me in and out and whilst I'm in the bath, plus a padded toilet seat on its way (I have absolutely no padding on my bum these days, and sitting on the loo or in the bath really hurts me' bones!)
I've even been offered a stair lift. It seems that when your prognosis is as limited as mine, you pretty much get anything you want for free, because they are only lending it to you for a short time. I'll leave it a little while, but I'm definitely noticing it getting even harder to get up stairs, so I can see a stair lift being introduced shortly!
Got to go now, its getting painful to write and I need to lie down again. Soon I will move my laptop up to my bed which will help me do more regular posts and also may help me do my Tax Return, which sill needs to be done as long as the IR believe there is a breath left in my body no doubt :(
Cheers,
Col
I had my new hospital bed delivered last Tuesday against the odds. We were still snowed in, and the delivery guys didn't fancy driving down the hill, so, amazingly, they constructed a contraption of all the bed parts and wheeled id down the hill on its castors through the snow, which I thought was beyond the call of duty - very impressed!
Bed has mad a great difference. the mattress seems similar to my existing one, but definitely cushions the potential bedsore areas better than mine did. It's also great for lying on my back - raising the head and legs is so much more comfortable, and also sitting up to eat or watch telly is good too.
Wednesday I saw the Orthopedic Therapist, and she came with a catalogue of a huge set of devices, all designed to help. I've already got an inflatable bath cushion to help me in and out and whilst I'm in the bath, plus a padded toilet seat on its way (I have absolutely no padding on my bum these days, and sitting on the loo or in the bath really hurts me' bones!)
I've even been offered a stair lift. It seems that when your prognosis is as limited as mine, you pretty much get anything you want for free, because they are only lending it to you for a short time. I'll leave it a little while, but I'm definitely noticing it getting even harder to get up stairs, so I can see a stair lift being introduced shortly!
Got to go now, its getting painful to write and I need to lie down again. Soon I will move my laptop up to my bed which will help me do more regular posts and also may help me do my Tax Return, which sill needs to be done as long as the IR believe there is a breath left in my body no doubt :(
Cheers,
Col
Friday, 8 January 2010
Friday 8th January 2010
Hi folks,
Snowed in here for the last four days. No huge amounts of snow - 6 inches or so - but it doesn't take much for the hill into our cul-de-sac to become unusable, and now they've stopped gritting anything except main roads, I guess we'll be snowed in for some time yet, especially as its just started snowing again!
In fact the snow meant that I missed my consultant's appointment on Tuesday for my scan results. However, we did manage to catch up by phone, and the overall results are as expected - new growth in lung and liver mets since my last chemo. No news about whether there is any known or likely spread elsewhere, but it seems that the liver and lungs are the two area to focus on. My liver is still working ok at the moment and I'm not in any pain, so I'm still little the wiser as to how long I can fight this for.
I'm getting the new hospital bed delivered on Monday which should help with comfort levels getting out of bed and sitting up to watch TV and also reducing the risk of pressure sores with the special matress.
No other news, just plodding on regardless, and sleeping ridiculous hours per day!
Cheers,
Colin x
Snowed in here for the last four days. No huge amounts of snow - 6 inches or so - but it doesn't take much for the hill into our cul-de-sac to become unusable, and now they've stopped gritting anything except main roads, I guess we'll be snowed in for some time yet, especially as its just started snowing again!
In fact the snow meant that I missed my consultant's appointment on Tuesday for my scan results. However, we did manage to catch up by phone, and the overall results are as expected - new growth in lung and liver mets since my last chemo. No news about whether there is any known or likely spread elsewhere, but it seems that the liver and lungs are the two area to focus on. My liver is still working ok at the moment and I'm not in any pain, so I'm still little the wiser as to how long I can fight this for.
I'm getting the new hospital bed delivered on Monday which should help with comfort levels getting out of bed and sitting up to watch TV and also reducing the risk of pressure sores with the special matress.
No other news, just plodding on regardless, and sleeping ridiculous hours per day!
Cheers,
Colin x
Friday, 1 January 2010
New Year's Day 2010
Happy New Year everybody!
Wow - 2010!
Had a quiet one last night - actually spent it watching a great film called "Australia" with Nicole Kidman. Tried a little champagne but only managed half a glass this time, and now I'm back on reduced steroids it rather wiped me out.
I was up at 7.30am yesterday which is extremely early for me, to have my last CT scan at Halifax hospital. Pretty routine as usual, but with the early start and not getting to bed until 1am it was a long day.
In return, I've spent most of the day in bed today to recover, but now I've stayed up beyond midnight again so I'm in danger of getting out of cycle again. Shouldn't be a problem - I've got nothing on until Monday so I've got time to bring things around again.
Nothing much else to offer at this point, so I hope you enjoy the weekend!
C x
Wow - 2010!
Had a quiet one last night - actually spent it watching a great film called "Australia" with Nicole Kidman. Tried a little champagne but only managed half a glass this time, and now I'm back on reduced steroids it rather wiped me out.
I was up at 7.30am yesterday which is extremely early for me, to have my last CT scan at Halifax hospital. Pretty routine as usual, but with the early start and not getting to bed until 1am it was a long day.
In return, I've spent most of the day in bed today to recover, but now I've stayed up beyond midnight again so I'm in danger of getting out of cycle again. Shouldn't be a problem - I've got nothing on until Monday so I've got time to bring things around again.
Nothing much else to offer at this point, so I hope you enjoy the weekend!
C x
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