Off on holiday tomorrow - and it can't come too soon for me!
I'm staying for a week at my mum and G's holiday apartment in Cornwall and then spending most of the second week with friends and family in the South East and Herefordshire. It'll be nice to see people and great just to relax without That Old Chemo Feeeling. A shame J can't get the time off - but we'll do something special together once I've got the op out of the way.
Today has been steady workwise after a hectic two days in Birmingham. I'm glad really - I've got a slight blockage today ( I thought there were nuts in that Indian meal last night…) and I don't really want to be rushing about while it's sorting itself out. Ho hum
You'll have seen the note I got on my last posting from Jules about Martin, one of my Other Bottoms. The link has been taken off ( I assume by his friends or family) but I'm going to leave it in the sidebar anyway as my own memorial.
So. I'm sure I'll find a way to blog while I'm away if I want to but there again, I might be having too much of a good time!
Back soon.
Thursday, August 17, 2006
Monday, August 14, 2006
Weary
A lovely Together weekend with J - at mine on Saturday ( watching DVDs and playing on the mac) and hers on Sunday, sorting some stuff on her laptop - mostly successfully.
I felt pretty postchemo on Saturday and into Sunday but it was all bearable. Tummy quite upset though. An early night and a deep deep sleep and I woke up feeling pretty much OK this morning. However, as the day has gone on today, I've felt more and more weary. Really feel like a nap now but loads to do workwise ( in Birmingham for two days from tomorrow) so I should try and hang on for at least another hour...
I felt pretty postchemo on Saturday and into Sunday but it was all bearable. Tummy quite upset though. An early night and a deep deep sleep and I woke up feeling pretty much OK this morning. However, as the day has gone on today, I've felt more and more weary. Really feel like a nap now but loads to do workwise ( in Birmingham for two days from tomorrow) so I should try and hang on for at least another hour...
Friday, August 11, 2006
Studio
It's great to have the creative space I always dreamed of.
Better get on with creating some stuff now then eh...?
Better get on with creating some stuff now then eh...?
Eatin's Cheatin...
A busy day in London and rail transport all very busy because of the plane scare. I was over at Canary Wharf for a meeting with a client. Amazing - I haven't been there since I worked for the Development Corporation there in the early nineties. Even more amazing were the clients - I can't beleive people really talk in such a weird language all the time. Best line of all was when I made a comment about catching a bite to eat before heading back up North. "Eatin's Cheatin'!" they chorussed as one. I'm not sure they were joking.
Got back up home in time for my 6 weekly haircut and facial. Bliss! A nice end to a week where I've felt human again.
Slept like a log and up sharp this morning for the blood test they forgot to do on Wednesday. A busy work day at home and then back for Chemo XIV ( that's 16/30 or er... 8/15ths... ) in the afternoon. I think they may have been listening to me because they've cut my dose by 25%. I'm glad about that - I don't want feel too grim - J and I are playing on computers this weekend...
But at least it's the last treatment for a fortnight while I'm on holiday from next Friday. Here's hoping for an easy ride!
And plenty of eatin...
Got back up home in time for my 6 weekly haircut and facial. Bliss! A nice end to a week where I've felt human again.
Slept like a log and up sharp this morning for the blood test they forgot to do on Wednesday. A busy work day at home and then back for Chemo XIV ( that's 16/30 or er... 8/15ths... ) in the afternoon. I think they may have been listening to me because they've cut my dose by 25%. I'm glad about that - I don't want feel too grim - J and I are playing on computers this weekend...
But at least it's the last treatment for a fortnight while I'm on holiday from next Friday. Here's hoping for an easy ride!
And plenty of eatin...
Wednesday, August 09, 2006
Checking In
Got myself back again this week - I feel so much more lively and work isn't such a struggle. That's post-chemo for you...
Went in to the Clinic this afternoon for a review with one of the Sisters. ( Are they still called Sisters? Probably Clinical Nursing Manager...) Agreed that I'd go in for Chemo XVI on Friday and then take two weeks off for my holidays. Back to start Chemo on 1 September and see Dr C on the 4th. I told her that I'd seen Mr Bain about the reconnection and she seemed very relaxed about that. ( This really is my issue isn't it?)
I also got an appointment for my pre op barium X ray through today -unfortunately it's when I'm on holiday so it'll have to be re-arranged for early September as well. At least things feel like they're moving on again.
Going to take myself out for a pub meal now - then an early night as I'm in London tomorrow.
Went in to the Clinic this afternoon for a review with one of the Sisters. ( Are they still called Sisters? Probably Clinical Nursing Manager...) Agreed that I'd go in for Chemo XVI on Friday and then take two weeks off for my holidays. Back to start Chemo on 1 September and see Dr C on the 4th. I told her that I'd seen Mr Bain about the reconnection and she seemed very relaxed about that. ( This really is my issue isn't it?)
I also got an appointment for my pre op barium X ray through today -unfortunately it's when I'm on holiday so it'll have to be re-arranged for early September as well. At least things feel like they're moving on again.
Going to take myself out for a pub meal now - then an early night as I'm in London tomorrow.
Monday, August 07, 2006
Sympathy
Feeling a lot better today - definitely the beginnings of post chemo lightness. No sickness now.
On Saturday afternoon, I came home to some flowers that had been left with my neighbours.
How nice. Someone thinking of me. I read the label:
"Sending You Heartfelt Sympathy and Love...."
Ah. What do they know that I don't..?
I checked again - for the woman who used to live here 3 years ago. I think her dad must have died -there had been a big funeral in the village earlier that day.
But a chap could get paranoid, you know.
Or just see the funny side.
On Saturday afternoon, I came home to some flowers that had been left with my neighbours.
How nice. Someone thinking of me. I read the label:
"Sending You Heartfelt Sympathy and Love...."
Ah. What do they know that I don't..?
I checked again - for the woman who used to live here 3 years ago. I think her dad must have died -there had been a big funeral in the village earlier that day.
But a chap could get paranoid, you know.
Or just see the funny side.
Sunday, August 06, 2006
Thought for the Day
It is Sunday after all....
I recently got this offblog from a very good friend: ( Used with their permission)
"In a blog entry for an early chemo time you reported pain that the chemo people thought couldn't possibly be after effects, it was too soon. As if you anticipated feeling as you do now, from the start. 'I just want to get on with my life' echoes the options given you before starting the chemo. There's nothing in your writing about the other side: 'this makes me feel so bad I will quit it; but it may save/extend my life...' Have you forgotten that it might, do you disbelieve that it will, is there no point doing further research about it? Are you just blogging that way for literary effect? Is your fundamental position that the cancer can't kill you; or that it's going to, chemo or not; or that the chemo now is worse than how ill you'll feel with the further cancer it possibly - possibly... - can't retard/prevent if you quit now? Maybe 15/30 is enough? Who derived those numbers anyway? (bet they never had to take the treatment). "
Good and clear eh?
Here's what I replied:
"I bet a lot of people are thinking like you - essentially " Why doesn't he put up or shut up?" I think when it boils down to it, the hospital won't or can't tell me that another 15 treatments will significantly improve my chances of avoiding a recurrence - actually with my form of cancer, they can't actually tell me ( they don't have the stats) whether it will make any difference at all. I know they THINK it might or they wouldn't have given me the ( expensive ) treatment. If they just sat me down and said " Simon - we know how much you hate this treatment, but honestly - just another 10...? But they don't - the attitude and tone is " You can stop this anytime you like, you know..." So in that position, I am forced back on my own resources. (I've spent long hours in my counseling sessions on this ) And yes, I AM nervous about plainly saying that 15 is enough and I'll not have any more before the reconnection - after all, Doctor is supposed to know best - so I'll continue with as many treatments as I can - but each one from now on will be a fight. There's something more that the hospital should be doing for me in terms of support or understanding ( or just LISTENING) but I'm damned if I know what it is - and I can't tell them what. "
I think the only thing I'll add to that is that I have been thinking a lot and frankly, worrying a lot about the cancer recurring. The thing is that pressing on to complete the full course of chemo doesn't help to assuage those worries at all. Make of that what you will - I reckon it's just me beginning to prepare myself for my post-connection future. " Getting on with the rest of my life" will also mean dealing with that worry all the time - and particularly around the time of every 6 monthly check up for five years.
On a more cheerful note ( !) - it's a sunny Sunday morning and the sickness is finally beginning to fade.
I recently got this offblog from a very good friend: ( Used with their permission)
"In a blog entry for an early chemo time you reported pain that the chemo people thought couldn't possibly be after effects, it was too soon. As if you anticipated feeling as you do now, from the start. 'I just want to get on with my life' echoes the options given you before starting the chemo. There's nothing in your writing about the other side: 'this makes me feel so bad I will quit it; but it may save/extend my life...' Have you forgotten that it might, do you disbelieve that it will, is there no point doing further research about it? Are you just blogging that way for literary effect? Is your fundamental position that the cancer can't kill you; or that it's going to, chemo or not; or that the chemo now is worse than how ill you'll feel with the further cancer it possibly - possibly... - can't retard/prevent if you quit now? Maybe 15/30 is enough? Who derived those numbers anyway? (bet they never had to take the treatment). "
Good and clear eh?
Here's what I replied:
"I bet a lot of people are thinking like you - essentially " Why doesn't he put up or shut up?" I think when it boils down to it, the hospital won't or can't tell me that another 15 treatments will significantly improve my chances of avoiding a recurrence - actually with my form of cancer, they can't actually tell me ( they don't have the stats) whether it will make any difference at all. I know they THINK it might or they wouldn't have given me the ( expensive ) treatment. If they just sat me down and said " Simon - we know how much you hate this treatment, but honestly - just another 10...? But they don't - the attitude and tone is " You can stop this anytime you like, you know..." So in that position, I am forced back on my own resources. (I've spent long hours in my counseling sessions on this ) And yes, I AM nervous about plainly saying that 15 is enough and I'll not have any more before the reconnection - after all, Doctor is supposed to know best - so I'll continue with as many treatments as I can - but each one from now on will be a fight. There's something more that the hospital should be doing for me in terms of support or understanding ( or just LISTENING) but I'm damned if I know what it is - and I can't tell them what. "
I think the only thing I'll add to that is that I have been thinking a lot and frankly, worrying a lot about the cancer recurring. The thing is that pressing on to complete the full course of chemo doesn't help to assuage those worries at all. Make of that what you will - I reckon it's just me beginning to prepare myself for my post-connection future. " Getting on with the rest of my life" will also mean dealing with that worry all the time - and particularly around the time of every 6 monthly check up for five years.
On a more cheerful note ( !) - it's a sunny Sunday morning and the sickness is finally beginning to fade.
Friday, August 04, 2006
Tamar Bailey
I was just adding a link to the sidebar when I thought I'd check the other links. You may remember that I blogged before about Tamar Bailey?
She died on June 6th - aged 26.
God Bless...
She died on June 6th - aged 26.
God Bless...
Friday
Still feeling grim so I rang this morning and cancelled the chemo session for today.
It really is going to be very difficult to sustain the chemo over the next couple of months - I dislike it so much. Even though I'm taking a couple of weeks off when I go on holiday at the end of the month, I suspect that that will just make coming back to it even more difficult. It doesn't seem enough to say " well, it's only x more..." - I don't want ANY more actually....
Have just ordered an Indian takeaway - decided that will either make me feel better or er... not.
It really is going to be very difficult to sustain the chemo over the next couple of months - I dislike it so much. Even though I'm taking a couple of weeks off when I go on holiday at the end of the month, I suspect that that will just make coming back to it even more difficult. It doesn't seem enough to say " well, it's only x more..." - I don't want ANY more actually....
Have just ordered an Indian takeaway - decided that will either make me feel better or er... not.
Wednesday, August 02, 2006
Getting On With It
I'm still feeling a bit sick. I spoke to the chemo clinic yesterday and they said it sounded like some kind of viral infection. They said to keep an eye on things and to ring them on Friday morning to let them know how I feel. It's certainly better today and and I'm intending to go to Birmingham as planned tomorrow but I wouldn't want to have another chemo treatment feeling as I do at the moment.
Tied in with this is the outcome of my hospital appointment/review this afternoon. I'd decided to ask Mr Bain to set a date for my reconnection sometime in the autumn and that I'd fit in as many chemos before that as I could before then. Allowing for the month interval between the end of chemo and the op itself that I need and holidays, then I reckon that's up to another 10 more treatments taking me to about 25 in all. That's enough payments on this policy in my view.
Mr Bain was in the clinic but I didn't see him but the Registrar instead. I explained what I wanted and he went off and asked the Great Man himself. He came back 5 minutes later with the OK !
So - maybe this is the beginning of the end! Next steps are for me to have a Barium X ray just to double check that all is well ( the doctor today examined me and said it felt fine to him ) and then for Mr Bain to call me to discuss what that means for the reconnection - sometime in October? I think I'm in for a difficult conversation with Dr Coxon in Chemotherapy ( I expect I'll be called for the monthly check up with her on Monday ) but I'm now much clearer that this is what I want.
I also saw Sue the Stoma Nurse just for a catch up but all's pretty much OK with the bag at the moment so it was short, friendly and chatty.
What to say about all that? well, I'm trying not to count too many chickens and to steel myself up to go with the rest of the chemo but really I'm just impatient to get on with the rest of my life now.
Another early night tonight.
Tied in with this is the outcome of my hospital appointment/review this afternoon. I'd decided to ask Mr Bain to set a date for my reconnection sometime in the autumn and that I'd fit in as many chemos before that as I could before then. Allowing for the month interval between the end of chemo and the op itself that I need and holidays, then I reckon that's up to another 10 more treatments taking me to about 25 in all. That's enough payments on this policy in my view.
Mr Bain was in the clinic but I didn't see him but the Registrar instead. I explained what I wanted and he went off and asked the Great Man himself. He came back 5 minutes later with the OK !
So - maybe this is the beginning of the end! Next steps are for me to have a Barium X ray just to double check that all is well ( the doctor today examined me and said it felt fine to him ) and then for Mr Bain to call me to discuss what that means for the reconnection - sometime in October? I think I'm in for a difficult conversation with Dr Coxon in Chemotherapy ( I expect I'll be called for the monthly check up with her on Monday ) but I'm now much clearer that this is what I want.
I also saw Sue the Stoma Nurse just for a catch up but all's pretty much OK with the bag at the moment so it was short, friendly and chatty.
What to say about all that? well, I'm trying not to count too many chickens and to steel myself up to go with the rest of the chemo but really I'm just impatient to get on with the rest of my life now.
Another early night tonight.
Tuesday, August 01, 2006
Godfather!
( Just discovered that this is my 200th post!)
Benjamin's christening in Weybridge at the weekend was great - we all had a great time as you can see. Such a shame that mum wasn't able to make it though. ( A took nephew N down to see her yesterday instead..)
The drives down and back were awful for J and I . We drove 2 X 300 miles in the space of 36 hours - 12 hours driving in total. ( AND the aircon has packed up again!) On the way down I started off OK but after a couple of hours felt really grim and J drove the rest .On the way back she was feeling ill with a tummy bug as well so we split the driving in shorter spells. Both went straight to bed when we got to our homes - and slept for 12 hours solid.
I wouldn't have missed the event for the world but it was very hard going. Still feeling pretty grim this morning ( although I'm trying to work ) - if I don't feel a bit better this afternoon I'll ring the clinic and see what they say about Friday's treatment. I can always cancel it - and I don't want to go into it feeling like this.
Although we were both not feeling our best last night we had a nice evening up at The Sage again , this time seeing Emmylou Harris. ( I'd bought us the tickets as part of J's birthday present) It was good to see her and the performance was impeccable, but just a bit low key. Or maybe that was us. Always terrifying to do middle aged audience spotting - hoping we look better than THEM...
Oh - and two links. Both to be taken with a pinch of salt...
Benjamin's christening in Weybridge at the weekend was great - we all had a great time as you can see. Such a shame that mum wasn't able to make it though. ( A took nephew N down to see her yesterday instead..)
The drives down and back were awful for J and I . We drove 2 X 300 miles in the space of 36 hours - 12 hours driving in total. ( AND the aircon has packed up again!) On the way down I started off OK but after a couple of hours felt really grim and J drove the rest .On the way back she was feeling ill with a tummy bug as well so we split the driving in shorter spells. Both went straight to bed when we got to our homes - and slept for 12 hours solid.
I wouldn't have missed the event for the world but it was very hard going. Still feeling pretty grim this morning ( although I'm trying to work ) - if I don't feel a bit better this afternoon I'll ring the clinic and see what they say about Friday's treatment. I can always cancel it - and I don't want to go into it feeling like this.
Although we were both not feeling our best last night we had a nice evening up at The Sage again , this time seeing Emmylou Harris. ( I'd bought us the tickets as part of J's birthday present) It was good to see her and the performance was impeccable, but just a bit low key. Or maybe that was us. Always terrifying to do middle aged audience spotting - hoping we look better than THEM...
Oh - and two links. Both to be taken with a pinch of salt...
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