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
Monday, 18 January 2010
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
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