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
Friday, 25 December 2009
Christmas Day 2009 (Just)
Happy Christmas Everybody!
Hope you've had a great one?
We had a fantastic Crimbo Dinner thanks to Vanda. I contributed by carving the turkey breast, but that was the extent of my efforts and I'm very grateful to Van for producing such a nice spread.
I couldn't eat a whole lot, but I ate more than usual, and enough not to leave me feeling disappointed so that was great. I've also managed about two glasses of bubbles today, which is more alcohol than I've had for a long time - a special bottle of American Sonoma Valley Methode Champenoise from 1985 which I've been saving since about 1999, very tasty - some of the older Mercury folks might remember the trip up to the Sonoma Valley we took during a sales conference in San Francisco back in the days when we were given time off to take trips during the training schedule!
Anyway, thanks everybody for your Christmas wishes and calls, and I hope to see some of you soon!
Have a lovely relaxing Boxing Day, and I'll try to be in touch again soon!
Cheers
C x
Hope you've had a great one?
We had a fantastic Crimbo Dinner thanks to Vanda. I contributed by carving the turkey breast, but that was the extent of my efforts and I'm very grateful to Van for producing such a nice spread.
I couldn't eat a whole lot, but I ate more than usual, and enough not to leave me feeling disappointed so that was great. I've also managed about two glasses of bubbles today, which is more alcohol than I've had for a long time - a special bottle of American Sonoma Valley Methode Champenoise from 1985 which I've been saving since about 1999, very tasty - some of the older Mercury folks might remember the trip up to the Sonoma Valley we took during a sales conference in San Francisco back in the days when we were given time off to take trips during the training schedule!
Anyway, thanks everybody for your Christmas wishes and calls, and I hope to see some of you soon!
Have a lovely relaxing Boxing Day, and I'll try to be in touch again soon!
Cheers
C x
Friday, 18 December 2009
Friday 18th December 2009
Wow, two posts in a week, it's almost like the old days! :)
I actually meant to post yesterday, but as usual got distracted and forgot!
A few bits of news from my various outings this week:
Tuesday - Oncologist
Dr Hofmann has been speaking to the main man in our region, and also with the UK expert in my type of cancer, based in London, and they jointly agree that more treatment would not be beneficial. They feel that the chances of any benefits are so slim, and the likelihood of side-effects so high that it is just not worth it. Even though I have suffered almost no side-effects from my previous treatments, they feel that I am a lot less strong than I was even when I had my last cycle that I would be less able to fight the effects and that might mean me ending up back in hospital. It's a blow, but I must say that I do agree with their way of thinking.
I am going to have one more scan, between Christmas and New Year which will show how and where things are developing, so at least I know which is going to be the troublesome area - liver, lungs etc. I'll get the results from that on the 5th Jan.
My oncologist also confirmed that a lot of my tiredness and loss of appetite will definitely be to do with the cancer and not just my inability to eat much. The tumour markers in my blood test show that the cancer is definitely active again, so this willl have a lot to do with the way I am feeling.
Wednesday - GP
Spent most of the appointment discussing the lack of effects of the Citalopram anti-depressants. I've been on them about 6 weeks now, and I can't tell any difference, so I'm swapping to a new one over the next week - Venlafaxine - we'll see if that makes any difference.
I've also been told that I can up the dose of the steroids I'm on over a short period to give me a boost of energy and appetite, so I will definitely do that over Christmas.
Thursday - Hospice
We had a tour around the hospice in-patients section, which looks very nice and is open to me at any time, but I don't want to think about that yet. I want to stay at home for as long as I'm able, preferrably until the end, as once you move to the hospice, you're never coming out again!
It seems they can do a lot for you to help you stay at home though, and the first step was for them to call in the District Nurse for an assessment regarding a hospital bed at home.
Friday - District Nurse
We've just had the nurse around and she has been explaining what is on offer. They can get me an electric adjustable bed with a pressure-relieving matress as soon as I want one. This will help me get in and out of bed and adjusts to a sitting position so that I can watch tv etc in comfort. I'm still ok with my bed at the moment, but I will go ahead and get this new bed in the new year.
Other things this week ...
Firstly, thanks for all the birthday cards, Facebook messages and texts etc - very kind of you!
Thanks also for all the Christmas cards so far. I have to say that we are doing our best, but we are unlikely to get all our cards done this year in time for the deadline on Monday, so please bear with me if you don't get a card this year. I do have the time, but it takes much more energy than you expect, so I hope you understand :(
Glad I didn't consider the Ferrari this weekend - widespread snow would have dented the fun a bit! Unfortunately that probably means I won't ever get it now, as I'm not sure my capabilities are up to it any more - we'll have to see how Christmas goes
Anyway, that's enough for now,
Speak soon(ish)
Col
I actually meant to post yesterday, but as usual got distracted and forgot!
A few bits of news from my various outings this week:
Tuesday - Oncologist
Dr Hofmann has been speaking to the main man in our region, and also with the UK expert in my type of cancer, based in London, and they jointly agree that more treatment would not be beneficial. They feel that the chances of any benefits are so slim, and the likelihood of side-effects so high that it is just not worth it. Even though I have suffered almost no side-effects from my previous treatments, they feel that I am a lot less strong than I was even when I had my last cycle that I would be less able to fight the effects and that might mean me ending up back in hospital. It's a blow, but I must say that I do agree with their way of thinking.
I am going to have one more scan, between Christmas and New Year which will show how and where things are developing, so at least I know which is going to be the troublesome area - liver, lungs etc. I'll get the results from that on the 5th Jan.
My oncologist also confirmed that a lot of my tiredness and loss of appetite will definitely be to do with the cancer and not just my inability to eat much. The tumour markers in my blood test show that the cancer is definitely active again, so this willl have a lot to do with the way I am feeling.
Wednesday - GP
Spent most of the appointment discussing the lack of effects of the Citalopram anti-depressants. I've been on them about 6 weeks now, and I can't tell any difference, so I'm swapping to a new one over the next week - Venlafaxine - we'll see if that makes any difference.
I've also been told that I can up the dose of the steroids I'm on over a short period to give me a boost of energy and appetite, so I will definitely do that over Christmas.
Thursday - Hospice
We had a tour around the hospice in-patients section, which looks very nice and is open to me at any time, but I don't want to think about that yet. I want to stay at home for as long as I'm able, preferrably until the end, as once you move to the hospice, you're never coming out again!
It seems they can do a lot for you to help you stay at home though, and the first step was for them to call in the District Nurse for an assessment regarding a hospital bed at home.
Friday - District Nurse
We've just had the nurse around and she has been explaining what is on offer. They can get me an electric adjustable bed with a pressure-relieving matress as soon as I want one. This will help me get in and out of bed and adjusts to a sitting position so that I can watch tv etc in comfort. I'm still ok with my bed at the moment, but I will go ahead and get this new bed in the new year.
Other things this week ...
Firstly, thanks for all the birthday cards, Facebook messages and texts etc - very kind of you!
Thanks also for all the Christmas cards so far. I have to say that we are doing our best, but we are unlikely to get all our cards done this year in time for the deadline on Monday, so please bear with me if you don't get a card this year. I do have the time, but it takes much more energy than you expect, so I hope you understand :(
Glad I didn't consider the Ferrari this weekend - widespread snow would have dented the fun a bit! Unfortunately that probably means I won't ever get it now, as I'm not sure my capabilities are up to it any more - we'll have to see how Christmas goes
Anyway, that's enough for now,
Speak soon(ish)
Col
Monday, 14 December 2009
Monday 14th December 2009
Hi again,
I should have posted yesterday really, as it was my birthday (46!), but I had a bit of a low energy day again and spent most of the day in bed, and what was left of it firmly glued to the sofa.
It's been mostly the same since my last post really - my only time out of the house was the weekly visit to the hospice on Thursday.
I did have some good news whilst I was there though - I had a blood test last week to check for a few things, particularly dehydration as I am unable to drink much at the moment. The results show that I am not dehydrated and nor am I showing any signs of anemia which is all good. There are a couple of results called "tumour markers". I'm not sure what they mean, but one is up on last time and one is down. I'm seeing my oncologist again tomorrow, so we should get some answers from her.
I didn't go for the Ferrari this weekend after all, as I wasn't sure I felt up to making the most of it, and instead I planned for this coming weekend. Unfortunately the forecast is for snow and ice in parts over the weekend, so this might not be an ideal weekend either. We'll see
So that's about it for now. I'll have more to say after tomorrow's oncologist appointment and my GP appointment on Wednesday, so I'll post an update then.
Cheers,
C x
I should have posted yesterday really, as it was my birthday (46!), but I had a bit of a low energy day again and spent most of the day in bed, and what was left of it firmly glued to the sofa.
It's been mostly the same since my last post really - my only time out of the house was the weekly visit to the hospice on Thursday.
I did have some good news whilst I was there though - I had a blood test last week to check for a few things, particularly dehydration as I am unable to drink much at the moment. The results show that I am not dehydrated and nor am I showing any signs of anemia which is all good. There are a couple of results called "tumour markers". I'm not sure what they mean, but one is up on last time and one is down. I'm seeing my oncologist again tomorrow, so we should get some answers from her.
I didn't go for the Ferrari this weekend after all, as I wasn't sure I felt up to making the most of it, and instead I planned for this coming weekend. Unfortunately the forecast is for snow and ice in parts over the weekend, so this might not be an ideal weekend either. We'll see
So that's about it for now. I'll have more to say after tomorrow's oncologist appointment and my GP appointment on Wednesday, so I'll post an update then.
Cheers,
C x
Wednesday, 2 December 2009
Wednesday 2nd December 2009
Hi Folks,
How time flies at the moment. No sooner have I made a blog post than I am suddenly overdue for my next - sorry if I worry you with my absence, but thanks also for those reminders!
Quite a tough week with lack of energy - I'm losing the desire to get out and about so much and am preferring to rest at home as much as I can. I did get out last Friday to meet some mates I used to work with, and it was great to see everyone again, but tinged with a bit of sadness that it would usually be our annual drinking reunion, and I was unable to partake and could only last about an hour and a half.
I also decided earlier in the week that I was no longer up for doing the gig on Saturday, so got my stand-in to play instead. I had planned to go over and see the first part of the show, but again I felt too tired to go out twice in a row, so I ended up staying in. Although I clearly wasn't up to the gig, it is a big shame because that probably sees the end of my gigging days, and after nearly 30 years, that is quite a wrench. However, it has definitely got to the point where the early start, late finish, humping of gear, strain of the gig itself and the associated waiting around has surpassed the fun factor that I used to get, so I guess now is the right time to pack it in. Maybe I'll be able to do one farewell gig at some point - we'll see.
On the health front, not much changes - I had my second session of acupuncture and the jury is still out. I think it would be easier to tell if I was having it for pain relief as the effects would be more obvious, but for nausea and breathlessness its much harder to spot any immediate benefit. I'll keep going though, in the interests of experimentation if nothing else.
On a reduced dose of the steroids now, so I'm not getting much benefit from them, and I'm not sure the effects of the Citalopram anti-depressants have kicked in yet (although some of the side effects like involuntary leg movements have). I'm told it takes a few weeks, but that's three weeks now with no discernible difference - again, I'll have to wait and see.
Other news is that I got my blue disabled badge today, so I am officially disabled and allowed to park for up to 3 hours on double yellow lines, as well as get free parking at lots of places like hospitals etc. I'm thinking of getting the Ferrari in a couple of weeks time if I feel up to it, and I plan to have fun parking it in disabled bays and waiting for people to start having a go at me until I show them my badge! Who says us disabled folks can't have fun? :)
Anyway, that's it for now - need to get back to the sofa for a rest.
As usual I will make a feeble and hollow promise to be more active on the blog in future, but if I fail it is because I have either little to say or little energy to say it, so bear with me :)
Cheers,
Col x
How time flies at the moment. No sooner have I made a blog post than I am suddenly overdue for my next - sorry if I worry you with my absence, but thanks also for those reminders!
Quite a tough week with lack of energy - I'm losing the desire to get out and about so much and am preferring to rest at home as much as I can. I did get out last Friday to meet some mates I used to work with, and it was great to see everyone again, but tinged with a bit of sadness that it would usually be our annual drinking reunion, and I was unable to partake and could only last about an hour and a half.
I also decided earlier in the week that I was no longer up for doing the gig on Saturday, so got my stand-in to play instead. I had planned to go over and see the first part of the show, but again I felt too tired to go out twice in a row, so I ended up staying in. Although I clearly wasn't up to the gig, it is a big shame because that probably sees the end of my gigging days, and after nearly 30 years, that is quite a wrench. However, it has definitely got to the point where the early start, late finish, humping of gear, strain of the gig itself and the associated waiting around has surpassed the fun factor that I used to get, so I guess now is the right time to pack it in. Maybe I'll be able to do one farewell gig at some point - we'll see.
On the health front, not much changes - I had my second session of acupuncture and the jury is still out. I think it would be easier to tell if I was having it for pain relief as the effects would be more obvious, but for nausea and breathlessness its much harder to spot any immediate benefit. I'll keep going though, in the interests of experimentation if nothing else.
On a reduced dose of the steroids now, so I'm not getting much benefit from them, and I'm not sure the effects of the Citalopram anti-depressants have kicked in yet (although some of the side effects like involuntary leg movements have). I'm told it takes a few weeks, but that's three weeks now with no discernible difference - again, I'll have to wait and see.
Other news is that I got my blue disabled badge today, so I am officially disabled and allowed to park for up to 3 hours on double yellow lines, as well as get free parking at lots of places like hospitals etc. I'm thinking of getting the Ferrari in a couple of weeks time if I feel up to it, and I plan to have fun parking it in disabled bays and waiting for people to start having a go at me until I show them my badge! Who says us disabled folks can't have fun? :)
Anyway, that's it for now - need to get back to the sofa for a rest.
As usual I will make a feeble and hollow promise to be more active on the blog in future, but if I fail it is because I have either little to say or little energy to say it, so bear with me :)
Cheers,
Col x
Sunday, 22 November 2009
Sunday 22nd November 2009
What can I say? Spurs beat Wigan today NINE - ONE!! It doesn't get better than that (except if it was Arsenal, Man Utd or Chelsea of course :) Well done chaps - RESULT!
I had my first experience of acupuncture on Thursday - I had needles in my left shoulder, the front of my neck and in each wrist and hand. The arm ones were for the nausea and the shoulder/neck ones for breathlessness. The needles are extremely fine - like a human hair really - so didn't hurt at all and didn't cause any bleeding, just a slight sensation when they went in.
I'm not sure I noticed any immediate change, but I will be having about six sessions, and the effects get more lasting the more sessions you have, so we'll see how things progress.
The steroids are still doing a good job. I'm still short of energy, but I'm able to get up the stairs without necessarily needing a rest at the top. However, I'm in the middle of the course now, so soon I will have to go back to normal, and at that point we can really see if the acupuncture is helping.
I've got a gig next weekend which I'm a little worried about. This might have to be my last, we'll see how it goes, but my strength is definitely waning, and there will become a point when I just don't enjoy it any more due to the effort involved. The gig is in a pub in Didsbury, so hopefully it might at least be ground floor which would help. It's not somewhere we've played before though so I'll have to wait and see.
Not much else to report this week. Just had a nice weekend with my brother and his girlfriend up here for a visit, and now looking forward to Top Gear and Match of the day (nine - one! Can you believe it!!?).
Speak soon whenever I've got something to say!
In the meantime, thanks as usual for all the emails texts and blog comments - I really do appreciate it!
Cheers,
Col x
I had my first experience of acupuncture on Thursday - I had needles in my left shoulder, the front of my neck and in each wrist and hand. The arm ones were for the nausea and the shoulder/neck ones for breathlessness. The needles are extremely fine - like a human hair really - so didn't hurt at all and didn't cause any bleeding, just a slight sensation when they went in.
I'm not sure I noticed any immediate change, but I will be having about six sessions, and the effects get more lasting the more sessions you have, so we'll see how things progress.
The steroids are still doing a good job. I'm still short of energy, but I'm able to get up the stairs without necessarily needing a rest at the top. However, I'm in the middle of the course now, so soon I will have to go back to normal, and at that point we can really see if the acupuncture is helping.
I've got a gig next weekend which I'm a little worried about. This might have to be my last, we'll see how it goes, but my strength is definitely waning, and there will become a point when I just don't enjoy it any more due to the effort involved. The gig is in a pub in Didsbury, so hopefully it might at least be ground floor which would help. It's not somewhere we've played before though so I'll have to wait and see.
Not much else to report this week. Just had a nice weekend with my brother and his girlfriend up here for a visit, and now looking forward to Top Gear and Match of the day (nine - one! Can you believe it!!?).
Speak soon whenever I've got something to say!
In the meantime, thanks as usual for all the emails texts and blog comments - I really do appreciate it!
Cheers,
Col x
Monday, 16 November 2009
Monday 16th November 2009
Hi All,
Quite a busy end to the week, so I waited til today to post an update - sorry for the delay!
I had a bit of a bad day on Thursday - I felt really tired and a bit nauseous. I went to the Hospice therapy session and met the doctor and social worker (she's going to help me get a blue disabled badge which will help).
The doctor recommended some drugs for my breathlessness and to help me through the weekend, and she is also going to start me on a course of acupuncture this Thursday to see if she can alleviate some of the underlying nausea I still get.
I got an appointment with my GP Thursday evening and she prescribed me the drugs the Hospice doc had recommended - OraMorph (oral morphine), which helps breathlessness when taken in small doses, and a course of the Dexomethasone steroids I was on during my chemo. These have both helped quite a lot and I've had a pretty good weekend on the energy front, despite suffering a bit from the nausea.
Friday I took delivery of the awesome Audi R8 for the weekend:
Saturday we set off for the MPH Show at the NEC featuring Top Gear Live courtesy of the Stig (thank-you kindly sir, much appreciated!). We had to wait for him in the foyer so he could come out and give us the tickets. When he came out in his civvies it was really funny to watch hundreds of people pass within inches of him with "I am the Stig" t-shirts on, completely unaware that the real thing was standing right by them!
The show was excellent - culminating in the Stig performing a loop the loop in a car - check out the videos ...
Clarkson, Hammond and May racing Reliant Robins - hilarious! ...
Stig doing the loop ...
Sunday we took the R8 out for a run to the East Coast - Scarborough, Robin Hood's Bay and Whitby. I'd been to Whitby before when I was about 9, but neither of the other places so it was a nice trip. I won't mention the speed that the R8 made on the York bypass :) Awesome car, just awesome ... I have to admit that I was pretty knackered when I got in last night though. Driving is still one thing I can do in relative comfort, but it is quite tiring in the end, especially when driving in the dark where my night vision is not quite as sharp as it used to be so I have to really concentrate.
Unfortunately the car was collected this afternoon, so its back to normality for a while - next hire will be a Ferrari F430, so looking forward to that already!
I did mean to post on the 7th Nov, as that was the anniversary of my diagnosis. I am now officially a Government statistic as a "one year cancer survivor". It's been quite a year, but as I've said before, I just seem to have gone along with it and got used to it.
It doesn't really feel any different although my eating and drinking, my energy levels and the fact that I look like one of those guys photographed in a concentration camp at the end of the war with all my ribs sticking out are really different circumstances to get used to.
I'll let you know how I get on with the acupuncture - that's my highlight of this week (and the fact that I officially go off work on Wednesday)
Cheers,
Colin.
Quite a busy end to the week, so I waited til today to post an update - sorry for the delay!
I had a bit of a bad day on Thursday - I felt really tired and a bit nauseous. I went to the Hospice therapy session and met the doctor and social worker (she's going to help me get a blue disabled badge which will help).
The doctor recommended some drugs for my breathlessness and to help me through the weekend, and she is also going to start me on a course of acupuncture this Thursday to see if she can alleviate some of the underlying nausea I still get.
I got an appointment with my GP Thursday evening and she prescribed me the drugs the Hospice doc had recommended - OraMorph (oral morphine), which helps breathlessness when taken in small doses, and a course of the Dexomethasone steroids I was on during my chemo. These have both helped quite a lot and I've had a pretty good weekend on the energy front, despite suffering a bit from the nausea.
Friday I took delivery of the awesome Audi R8 for the weekend:
Saturday we set off for the MPH Show at the NEC featuring Top Gear Live courtesy of the Stig (thank-you kindly sir, much appreciated!). We had to wait for him in the foyer so he could come out and give us the tickets. When he came out in his civvies it was really funny to watch hundreds of people pass within inches of him with "I am the Stig" t-shirts on, completely unaware that the real thing was standing right by them!
The show was excellent - culminating in the Stig performing a loop the loop in a car - check out the videos ...
Clarkson, Hammond and May racing Reliant Robins - hilarious! ...
Stig doing the loop ...
Sunday we took the R8 out for a run to the East Coast - Scarborough, Robin Hood's Bay and Whitby. I'd been to Whitby before when I was about 9, but neither of the other places so it was a nice trip. I won't mention the speed that the R8 made on the York bypass :) Awesome car, just awesome ... I have to admit that I was pretty knackered when I got in last night though. Driving is still one thing I can do in relative comfort, but it is quite tiring in the end, especially when driving in the dark where my night vision is not quite as sharp as it used to be so I have to really concentrate.
Unfortunately the car was collected this afternoon, so its back to normality for a while - next hire will be a Ferrari F430, so looking forward to that already!
I did mean to post on the 7th Nov, as that was the anniversary of my diagnosis. I am now officially a Government statistic as a "one year cancer survivor". It's been quite a year, but as I've said before, I just seem to have gone along with it and got used to it.
It doesn't really feel any different although my eating and drinking, my energy levels and the fact that I look like one of those guys photographed in a concentration camp at the end of the war with all my ribs sticking out are really different circumstances to get used to.
I'll let you know how I get on with the acupuncture - that's my highlight of this week (and the fact that I officially go off work on Wednesday)
Cheers,
Colin.
Sunday, 8 November 2009
Sunday 8th November 2009
Hi Folks,
Sorry for my distinct lack of posts this week - just laziness I'm afraid, no excuse!
This week I've been ok - I've been to see my GP for a general catch up, and she's prescribed me an anti-anxiety/anti-depressive drug called Citalopram, just in case my mental dip the other week is a sign of something a bit deeper. I've had a re-occurrence of a bit of eczema on my feet which I had a few years ago. This tends to be stress-related. Although I've not really felt stressed at all, the doc thinks this might be my body telling me something, which is another reason she gave me the Citalopram.
One of the side-effects of this drug can be nausea, so I'm on a low dose to start with to see if I tolerate it ok - just one tablet every other day for the moment. I've only had two so far, so nothing to report yet (it takes a couple of weeks to kick in apparently).
I also took up the offer from the Macmillan team to join the weekly therapy session at the local hospice on Thursday. I was a bit daunted at first because it was full of people a lot older than me and had the feel of a nursing home. However, once I'd met some of the staff and other "guests" (as they call us) it was really nice - very positive and friendly atmosphere. They also provide alternative therapy treatments such as massage, reflexology etc. I had a "Theraputic Touch" session, which is a bit like Reiki, but with hands on.
The staff there offer all sorts of useful services - there is a specialist doctor who performs acupuncture and can provide advice specifically tailored to terminally ill patients, plus a social worker who can help with such things as getting a disabled badge for my car so I don't have to walk so far.
Other news - my hair is starting to grow back. Very thin and fluffy at the moment and only growing slowly, but definitely visible now, plus I now have to start shaving again - only every other day, but its definitely growing more vigorously. Nothing has yet grown enough to indicate what my hair will be like when fully grown, so we'll have to wait and see about that, but at least there is progress!
Last couple of weekends have been really nice, meeting up with friends I haven't seen for over a year in both cases, and had a rehearsal with the band today, although that was a real struggle as I've been totally without energy all day.
On my way over to Macclesfield last weekend, I had a chance to drop in on Alderley Edge where my family used to live. After my mum died in 1995, I planted a small oak sapling on the edge as a gesture, and I went to see how it was getting on. It's amazing how slowly oaks grow and I am always surprised at how small it still is after 14 years. It must have been about 18" when I planted it, and this is what it looks like now, bigger, but by no means big! ...
That's about it for today, except I can finally mention Spurs again after having to keep silent for a while due to an embarrassing run of defeats (Stoke at home for gawds sake! And Arsenal! It can't have been much worse!) Nice win over Sunderland yesterday to keep us in 4th spot for now. Just hope Man City lose their game in hand now, and we'll be fine!
Better get some rest now - good luck to Elspeth by the way!
Cheers,
Colin.
Sorry for my distinct lack of posts this week - just laziness I'm afraid, no excuse!
This week I've been ok - I've been to see my GP for a general catch up, and she's prescribed me an anti-anxiety/anti-depressive drug called Citalopram, just in case my mental dip the other week is a sign of something a bit deeper. I've had a re-occurrence of a bit of eczema on my feet which I had a few years ago. This tends to be stress-related. Although I've not really felt stressed at all, the doc thinks this might be my body telling me something, which is another reason she gave me the Citalopram.
One of the side-effects of this drug can be nausea, so I'm on a low dose to start with to see if I tolerate it ok - just one tablet every other day for the moment. I've only had two so far, so nothing to report yet (it takes a couple of weeks to kick in apparently).
I also took up the offer from the Macmillan team to join the weekly therapy session at the local hospice on Thursday. I was a bit daunted at first because it was full of people a lot older than me and had the feel of a nursing home. However, once I'd met some of the staff and other "guests" (as they call us) it was really nice - very positive and friendly atmosphere. They also provide alternative therapy treatments such as massage, reflexology etc. I had a "Theraputic Touch" session, which is a bit like Reiki, but with hands on.
The staff there offer all sorts of useful services - there is a specialist doctor who performs acupuncture and can provide advice specifically tailored to terminally ill patients, plus a social worker who can help with such things as getting a disabled badge for my car so I don't have to walk so far.
Other news - my hair is starting to grow back. Very thin and fluffy at the moment and only growing slowly, but definitely visible now, plus I now have to start shaving again - only every other day, but its definitely growing more vigorously. Nothing has yet grown enough to indicate what my hair will be like when fully grown, so we'll have to wait and see about that, but at least there is progress!
Last couple of weekends have been really nice, meeting up with friends I haven't seen for over a year in both cases, and had a rehearsal with the band today, although that was a real struggle as I've been totally without energy all day.
On my way over to Macclesfield last weekend, I had a chance to drop in on Alderley Edge where my family used to live. After my mum died in 1995, I planted a small oak sapling on the edge as a gesture, and I went to see how it was getting on. It's amazing how slowly oaks grow and I am always surprised at how small it still is after 14 years. It must have been about 18" when I planted it, and this is what it looks like now, bigger, but by no means big! ...
That's about it for today, except I can finally mention Spurs again after having to keep silent for a while due to an embarrassing run of defeats (Stoke at home for gawds sake! And Arsenal! It can't have been much worse!) Nice win over Sunderland yesterday to keep us in 4th spot for now. Just hope Man City lose their game in hand now, and we'll be fine!
Better get some rest now - good luck to Elspeth by the way!
Cheers,
Colin.
Saturday, 31 October 2009
Saturday 31st October - Hallowe'en!
So, Hallowe'en 2009 already! One of our imports from the US that I don't mind too much, apart from the overt commercialism!
I remember celebrating Hallowe'en as a kid, although we never did the trick or treat thing. We did carve lanterns, but they were from large turnips, not pumpkins as we didn't get pumpkins over here until quite recently. In a way it is a shame because I still remember the very distinctive smell that a turnip with a tea-light in it gave off - very different from a pumpkin!
And in those pre Nanny-state days (I would have been six or seven) we carved our own turnips, unsupervised and with a sharp knife - never did me any harm ...
Things for me have been a bit up and down over the last week or so. I have had a week of being very low physically and mentally, although I have perked up mentally in the last couple of days (unfortunately not very much physically). I re-engaged with the MacMilland nurse team on Thursday and they have promised me Oxygen as a next step for the breathlessness if and when I need it, although I found that my asthma inhaler which I rarely use came in helpful the other day, so I'll start to use that a bit more.
I'm also going to start visiting the Hospice on a Thursday where they offer free relaxation therapy, massage, reflexology etc, so that should be nice.
Abdominal pains have calmed down a bit, but they are still there. I now remember that they've been around at this level for quite a long time, so I think they are definitely to do with the cancer. I'm told this is normal, as the liver swells when it is diseased and puts pressure on the abdominals. I guess it is inevitable, and it's not actually painful, more a discomfort at the moment.
Biggest change to come is that I have decided that it is time to stop work. I will go off on vacation mid-November to use up my holiday and then plan to switch to sick leave on the 2nd January. It will be quite difficult to switch off after 12 years working in this specific part of the IT industry, but I think now is the time that I need to start really focusing on my illness and recognising how debilitating it is. Work has recently become a bit of a burden when I've been feeling sick or low, and it's time to release that burden.
This also means that I will definitely not be making the trips to Stockholm or Hamburg in December which is a shame, but I just wouldn't have been able to contribute much from a work perspective, or join in any of the social side, so it would have been a lot of strain for little reward
Uh-oh, it's starting to get dark. Soon I will be invaded by a million kids knocking on the door. Wouldn't be so bad except Vanda has managed to find an excuse to be away tonight, so I will have to get up from my sofa constantly to distribute mountains of sweets. This will do wonders for my breathlessness no doubt! Still, its only for a couple of hours I suppose (although that is the disadvantage of living on a housing estate full of families - millions of bloody kids!)
See you later!
C
Saturday, 24 October 2009
Saturday 24th October 2009
Hi Folks,
Thanks for all the messages of support over the last few days - very much appreciated as usual!
And good luck to Olivia who is running 10k tomorrow in support of Cancer Research - you go girl! (And enjoy the pub afterwards! :)
Abdominal pains are still there, but I think they are a little better - its difficult to tell, depends how much sitting up I do really. Still not sure if they are muscular or a symptom of the liver tumours. Still, they are not serious enough for pain killers yet, so I'm not too worried at this stage.
Otherwise I am certainly noticing that I am being sick more often now that I have finished the chemo, but it's usually to do with slightly overeating rather than nausea, although being sick does sometimes induce nausea for a while (I usually find that I am sick twice, and I feel nausea for about half an hour in between. Once I have been sick the second time, I feel better). It has become a bit routine now though, so it doesn't really bother me as long as I am at home - it's less pleasant when I'm out in public.
On a positive note, I'm starting to plan the next weekend away - the Top Gear show at the NEC on the 14th Nov. Hiring another nice car to get us down there (Audi R8), so I'm looking forward to that.
Nothing much else to add today, again thanks for the good wishes though ...
Cheers,
C x
Thanks for all the messages of support over the last few days - very much appreciated as usual!
And good luck to Olivia who is running 10k tomorrow in support of Cancer Research - you go girl! (And enjoy the pub afterwards! :)
Abdominal pains are still there, but I think they are a little better - its difficult to tell, depends how much sitting up I do really. Still not sure if they are muscular or a symptom of the liver tumours. Still, they are not serious enough for pain killers yet, so I'm not too worried at this stage.
Otherwise I am certainly noticing that I am being sick more often now that I have finished the chemo, but it's usually to do with slightly overeating rather than nausea, although being sick does sometimes induce nausea for a while (I usually find that I am sick twice, and I feel nausea for about half an hour in between. Once I have been sick the second time, I feel better). It has become a bit routine now though, so it doesn't really bother me as long as I am at home - it's less pleasant when I'm out in public.
On a positive note, I'm starting to plan the next weekend away - the Top Gear show at the NEC on the 14th Nov. Hiring another nice car to get us down there (Audi R8), so I'm looking forward to that.
Nothing much else to add today, again thanks for the good wishes though ...
Cheers,
C x
Tuesday, 20 October 2009
Tuesday 20th October 2009
Saw my oncologist today, and it's not entirely good news I'm afraid (with a healthy dose of English understatement ...)
The results of my recent scan have showed that the last two cycles of chemo haven't really had much of an effect, and actually things have got a little worse since the scan before. There are signs of new growth in the liver, and expanded growth in some lymph nodes.
Whilst this is not major growth, it puts paid to any further treatment with these chemo drugs as it shows that the body has formed a tolerance.
As it stands there are no further treatment ideas on the table, although there will be further consultation amongst the experts just in case. This means that at this stage they are now firmly focused on managing symptoms and letting this thing run its course. Given the voracity displayed so far, I guess this means that I'm unlikely to see out next year. Of course nothing is set in stone, but based on the aggressive nature of the cancer so far, I have to be realistic.
The plan now is to have another meeting with my oncologist on December 15th and to see how things have progressed by then, and then to decide whether another scan is appropriate or not.
In the meantime, I'm going to have to get used to being worried by every little pain or sensation - whether it is normal or a symptom of something worse. I'm already a little concerned that these abdominal pains I still have are not just muscular. I hope they are, and if so I know that this type of muscle pains take a while to recover as you are using the muscles all the time, but I do hope they clear up soon, as it is now over a week since they started.
Anyway, not good news overall, but I'm not ready to give up yet - there's plenty more fun to be had!
thanks for listening,
Col x
The results of my recent scan have showed that the last two cycles of chemo haven't really had much of an effect, and actually things have got a little worse since the scan before. There are signs of new growth in the liver, and expanded growth in some lymph nodes.
Whilst this is not major growth, it puts paid to any further treatment with these chemo drugs as it shows that the body has formed a tolerance.
As it stands there are no further treatment ideas on the table, although there will be further consultation amongst the experts just in case. This means that at this stage they are now firmly focused on managing symptoms and letting this thing run its course. Given the voracity displayed so far, I guess this means that I'm unlikely to see out next year. Of course nothing is set in stone, but based on the aggressive nature of the cancer so far, I have to be realistic.
The plan now is to have another meeting with my oncologist on December 15th and to see how things have progressed by then, and then to decide whether another scan is appropriate or not.
In the meantime, I'm going to have to get used to being worried by every little pain or sensation - whether it is normal or a symptom of something worse. I'm already a little concerned that these abdominal pains I still have are not just muscular. I hope they are, and if so I know that this type of muscle pains take a while to recover as you are using the muscles all the time, but I do hope they clear up soon, as it is now over a week since they started.
Anyway, not good news overall, but I'm not ready to give up yet - there's plenty more fun to be had!
thanks for listening,
Col x
Monday, 19 October 2009
AU55OME Weekend - Last Day :(
What a beautiful day! Sunshine across the whole UK in October - who'd have thought it?
Had to rush to get back to Benny Hill Park for 11am to get the car back. Unfortunately it wasn't picked up until nearly 2pm in the end, so I missed out on 3 hours extra driving. Never mind, we had a nice relaxing lunch in the bar until the helicopter arrived to take us home.
This time Ali & Alan were coming with us on the trip back up north, and like the trip down, we had a scaredy-cat in our midst! Ali is not a fan of flying and had been dreading the trip.
At spot on 2pm, the copter flew overhead and circled the hotel and the nice folks at the hotel drove us down to the landing pad in the golf buggy.
After a few photos and a quick briefing, we were off again ...
We had a quick detour via White Waltham airfield for refuelling, then we were on our way. Because of the detour, our return trip took us directly over Henley on Thames, where I grew up, which was really nice. For those of you familiar with Henley, here you can see Hambledon Lock ...
Temple Island ...
And Henley centre, with the Town Hall and Falaise Square ...
Thankfully, by now everyone, including Ali, was thoroughly enjoying the trip, so we didn't have to worry about making an emergency landing!
In the end the trip up north was very similar to the trip south, except the weather was better, so the visibility was even clearer.
The pilot pointed out a very interesting and sinister-looking place - a lake surrounded by plots where buildings had obviously been in the past. It looked like the scene of a crime, where all the evidence had been destroyed ...
After some investigation on Google Earth after we got back, it turns out that this was the site of the old "American Adventure" theme park in Derbyshire which went out of business in 2006, so not really sinister at all, but quite interesting all the same!
From there we flew over East Midlands airport - directly across the runway again - then on to Chesterfield and the famous twisted spire ...
From here it was on to Sheffield again, then on towards Leeds, past the Emley Mast, which is a landmark around here - you can see it from just about everywhere ...
Finally we landed back at the heliport at around 4.20pm, and walked the 10 paces to the car to go home.
Never before has my Audi S8 seemed slow ... it will never be the same again. Much as I love it, it will never accelerate or sound like an Aston Martin :(
However, on a positive note - it has to be said that all the bags fitted easily into the ample boot, and the back seat passengers were treated to a luxury ride with plenty of legroom, so I guess at least two out of four of us would have chosen the Audi over the Aston!
Finally, a nice evening in my favourite local pub, the Shibden Mill Inn rounded off the fabulous weekend - an absolutely AU55OME experience from beginning to end, not to mention all the lovely time spent with so many good friends!
Now to start thinking about the next one! Any ideas how to top that? Send suggestions on a postcard!
Back to normal for a while now - diarrhoea and puking down the toilet ... (sorry to ruin your pleasant mental image!)
Cheers,
Col x
Had to rush to get back to Benny Hill Park for 11am to get the car back. Unfortunately it wasn't picked up until nearly 2pm in the end, so I missed out on 3 hours extra driving. Never mind, we had a nice relaxing lunch in the bar until the helicopter arrived to take us home.
This time Ali & Alan were coming with us on the trip back up north, and like the trip down, we had a scaredy-cat in our midst! Ali is not a fan of flying and had been dreading the trip.
At spot on 2pm, the copter flew overhead and circled the hotel and the nice folks at the hotel drove us down to the landing pad in the golf buggy.
After a few photos and a quick briefing, we were off again ...
We had a quick detour via White Waltham airfield for refuelling, then we were on our way. Because of the detour, our return trip took us directly over Henley on Thames, where I grew up, which was really nice. For those of you familiar with Henley, here you can see Hambledon Lock ...
Temple Island ...
And Henley centre, with the Town Hall and Falaise Square ...
Thankfully, by now everyone, including Ali, was thoroughly enjoying the trip, so we didn't have to worry about making an emergency landing!
In the end the trip up north was very similar to the trip south, except the weather was better, so the visibility was even clearer.
The pilot pointed out a very interesting and sinister-looking place - a lake surrounded by plots where buildings had obviously been in the past. It looked like the scene of a crime, where all the evidence had been destroyed ...
After some investigation on Google Earth after we got back, it turns out that this was the site of the old "American Adventure" theme park in Derbyshire which went out of business in 2006, so not really sinister at all, but quite interesting all the same!
From there we flew over East Midlands airport - directly across the runway again - then on to Chesterfield and the famous twisted spire ...
From here it was on to Sheffield again, then on towards Leeds, past the Emley Mast, which is a landmark around here - you can see it from just about everywhere ...
Finally we landed back at the heliport at around 4.20pm, and walked the 10 paces to the car to go home.
Never before has my Audi S8 seemed slow ... it will never be the same again. Much as I love it, it will never accelerate or sound like an Aston Martin :(
However, on a positive note - it has to be said that all the bags fitted easily into the ample boot, and the back seat passengers were treated to a luxury ride with plenty of legroom, so I guess at least two out of four of us would have chosen the Audi over the Aston!
Finally, a nice evening in my favourite local pub, the Shibden Mill Inn rounded off the fabulous weekend - an absolutely AU55OME experience from beginning to end, not to mention all the lovely time spent with so many good friends!
Now to start thinking about the next one! Any ideas how to top that? Send suggestions on a postcard!
Back to normal for a while now - diarrhoea and puking down the toilet ... (sorry to ruin your pleasant mental image!)
Cheers,
Col x
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