Hubris. Not good. Especially if you've got a stoma.
Settled down to breakfast yesterday and fancied a bowl of All Bran. Good for the system I thought...
Not my system. A few hours later, my tummy started swelling and churning and for most of the rest of the day I was changing bags every 2 hours or so as they popped off under the pressure. Never again.
I finally managed to calm things enough to go down to see J as planned ( You can't let these things beat you) and we went off with her daughter D for a really nice meal at Joe Rigatoni's in Darlington. But by the time I got back to her place, the bag had gone again. I changed it there but decided to go home as I didn't want to have to be up all night there.
Of course Sod's Law meant that the bag actually behaved all night!
But the vigil did mean that I had the chance to finish listening to the audiobook of Dan Brown's The Da Vinci Code which I've been falling asleep to night after night since I got out of hospital. After all that time, it's become curiously addictive and I think that after all, I really quite enjoyed it. I saw a trailer for the film at the cinema the other day - definitely on the list to see!
A quiet day at home today - I'm up to Newcastle tonight for the Final Farewell Meal with work colleagues. I'm staying at the hotel where the meal is just to keep things simple.
Oh - and those nice people at Friends of The Heroes have published some more of my writing. This time a short story.
Friday, March 31, 2006
Thursday, March 30, 2006
I had a little Olive Tree...
Latest acquisition for my Summer Yard Project arrived this morning. Currently in the back yard so that I can see it from my kitchen. Next to it are a lovely set of mixed shrubs and heathers that J gave me for my birthday and then my Christmas Tree that I've had for the last 6 years.
So - back online after yesterday's gremlins. I was pretty sure it would right itself.
A nice visit from my friend M on Tuesday. Not seen her since before my op.
And a good day yesterday too. I called into the office to take my work laptop back - I'd been hoping that they'd forgotten about it.. ( Maybe this is the chance to get a new toy ... ) Sad to see the office nearly cleared of stuff - M & K doing sterling work still. I shall miss them personally and professionally.
Then to the cinema to see Syriana. An absolute class film - I can't recommend it highly enough - an very intelligent thriller indeed. Clooney deserved his Oscar for his role but I really liked Jeffrey Wright's beautifully understated performance. It even has a track from my favourite band The National!
Oh - and an update on my health? Well, as you can see from the above, I'm feeling pretty good at the moment. No night sweats for two nights ( I think Dr Coxon has scared them away!) and I'm trying out a new Bag Theory with Susan the Stoma Nurse. She thinks it might be a crease in my tummy that's causing the problem so has suggested trying putting it on standing up instead of sitting. Tried that this morning - 90 mins and counting...
Over to J's tonight. We're going to take her daughter D out for dinner.
Had a dream about starting with my new employers last night. A nice dream...
Wednesday, March 29, 2006
Offline
I've got that same problem with internet connection that I had a couple of weeks ago - I'm doing this from my ipaq. So no blog or email from me today I'm afraid - I'm sure it will have righted itself again tomorrow.
But I'm fine. After the surprises of Monday equilibrium has been restored. It's a lovely sunny day and I'm off to Newcastle!
More tomorrow.
Monday, March 27, 2006
Arses and Elbows
hmmm.. You can tell when a hospital has institutionally got used to you - you don't actually get to see your own doctor.I should have worked it out. An appointment with Dr Coxon at 2.00pm on a Monday? Same time as the Case Meeting they have each week...But Dr Lee, the Senior Registrar was initially very helpful and gave me plenty of time for my questions.There's no way they'd let me have the chemo orally - it's simply not licensed in the UK for use with rectal cancer and if Dr Coxon went ahead and anything went wrong, she wouldn't have a legal foot to stand on.
Ah well, I thought - I gave it my best shot. The monthly treatment it is.I asked about alternative therapies - they're not very happy about acupuncture - it's the ( small) danger of infection from the needles when my immune system is already down. Head and foot massages are OK ( including reflexology) but not full body massages – as if I’d want that in my bagridden state!
So far so good. The appointment ended with me signing the consent form and giving more blood – the next thing that was to happen was that the Chemo Unit would contact me in a day or two to sort out when to begin my treatment.
I came home and was halfway through a call with J to update her when I got a call from Alison the Colorectal Nurse. ( There’s a pecking order here.)
She said that Dr Lee had passed on her concerns about my continuing night sweats ( what concerns? I said they were still happening but were getting less frequent but she didn’t say anything to me about concerns) to Dr Coxon ( ah – she did show up then…) and could I tell her ( Alison) more about them. I repeated what I had told Dr Lee. Alison said she’d talk to Dr Lee.
Then Dr Lee rang me. Due to the continuing sweats and presence of the abscess they had decided that they couldn’t give me chemotherapy after all! Too much risk if I developed an infection once they’d knocked out my immune system with the chemo.
Amazing how suddenly she came up with a whole set of arguments about how chemo probably wasn’t that effective with rectal cancer anyway – they don’t have the research evidence etc…
I went up a height. I had specifically told her that the sweats were getting much less and I had thought this continuing decrease was the basis upon which Dr Coxon had agreed to give me chemo last week. Dr Lee wasn’t sure. ( I could hear the distinct sound of responsibility being avoided here… ) I also said how disappointed I was that they told me now - I was ready for that decision last week and had not been given any impression that the decision to give me chemo was dependent in some way.
I asked about deferring a final decision for another fortnight – after all, I’ve got three weeks till the deadline…
Dr Lee said she thought I should speak to Dr Coxon. ( The Dr Coxon I thought I’d be speaking to anyway at 2.00pm this afternoon…)
Dr Coxon rang. Rehearsal of all of the above. She said that her decision to go ahead with chemo last week was based on the assumption that by the time she ( sic) saw me today the night sweats would have cleared. Not what I understood.
Anyway. Something has been redeemed from the situation.
We’ve agreed that they will go ahead and set up the chemo appointments ( I understand there’s some preparation they need to do with me) for Week 12. Dr Coxon will see me in Week 11 ( a fortnight today ) to decide whether the abscess/sweats have sufficiently abated ( this means stopped I think) for her to go ahead with the chemo the next week. (The Night Sweats Diary begins tonight..) Final decision then. Well – at least that’s clear. She’s also going to put me on weekly chemo if it goes ahead as that is more controllable if I do pick up an infection.
Honestly! When you think about all the faff I went through about this decision and the different regimes I might have!
In the end everything is still up in the air – and given what Dr Lee said in her anti-chemo speech, it begins to make me wonder about the whole thing again. Tonight I almost don’t care either way.
As I muttered to myself later – it’s like they don’t know my arse from their elbow..
But I’ll be really pissed off if I end up not having chemo and they deny me the reconnection indefinitely due to the abscess. When I spoke to J later about it, she pointed out that if the abscess was such a concern, then why weren’t they giving me antibiotics to deal with it? Another call to Alison about that one tomorrow I think.
I’ve just been for a two mile walk .I think I feel better for it – but I think I’ll open a bottle of wine anyway…
Ah well, I thought - I gave it my best shot. The monthly treatment it is.I asked about alternative therapies - they're not very happy about acupuncture - it's the ( small) danger of infection from the needles when my immune system is already down. Head and foot massages are OK ( including reflexology) but not full body massages – as if I’d want that in my bagridden state!
So far so good. The appointment ended with me signing the consent form and giving more blood – the next thing that was to happen was that the Chemo Unit would contact me in a day or two to sort out when to begin my treatment.
I came home and was halfway through a call with J to update her when I got a call from Alison the Colorectal Nurse. ( There’s a pecking order here.)
She said that Dr Lee had passed on her concerns about my continuing night sweats ( what concerns? I said they were still happening but were getting less frequent but she didn’t say anything to me about concerns) to Dr Coxon ( ah – she did show up then…) and could I tell her ( Alison) more about them. I repeated what I had told Dr Lee. Alison said she’d talk to Dr Lee.
Then Dr Lee rang me. Due to the continuing sweats and presence of the abscess they had decided that they couldn’t give me chemotherapy after all! Too much risk if I developed an infection once they’d knocked out my immune system with the chemo.
Amazing how suddenly she came up with a whole set of arguments about how chemo probably wasn’t that effective with rectal cancer anyway – they don’t have the research evidence etc…
I went up a height. I had specifically told her that the sweats were getting much less and I had thought this continuing decrease was the basis upon which Dr Coxon had agreed to give me chemo last week. Dr Lee wasn’t sure. ( I could hear the distinct sound of responsibility being avoided here… ) I also said how disappointed I was that they told me now - I was ready for that decision last week and had not been given any impression that the decision to give me chemo was dependent in some way.
I asked about deferring a final decision for another fortnight – after all, I’ve got three weeks till the deadline…
Dr Lee said she thought I should speak to Dr Coxon. ( The Dr Coxon I thought I’d be speaking to anyway at 2.00pm this afternoon…)
Dr Coxon rang. Rehearsal of all of the above. She said that her decision to go ahead with chemo last week was based on the assumption that by the time she ( sic) saw me today the night sweats would have cleared. Not what I understood.
Anyway. Something has been redeemed from the situation.
We’ve agreed that they will go ahead and set up the chemo appointments ( I understand there’s some preparation they need to do with me) for Week 12. Dr Coxon will see me in Week 11 ( a fortnight today ) to decide whether the abscess/sweats have sufficiently abated ( this means stopped I think) for her to go ahead with the chemo the next week. (The Night Sweats Diary begins tonight..) Final decision then. Well – at least that’s clear. She’s also going to put me on weekly chemo if it goes ahead as that is more controllable if I do pick up an infection.
Honestly! When you think about all the faff I went through about this decision and the different regimes I might have!
In the end everything is still up in the air – and given what Dr Lee said in her anti-chemo speech, it begins to make me wonder about the whole thing again. Tonight I almost don’t care either way.
As I muttered to myself later – it’s like they don’t know my arse from their elbow..
But I’ll be really pissed off if I end up not having chemo and they deny me the reconnection indefinitely due to the abscess. When I spoke to J later about it, she pointed out that if the abscess was such a concern, then why weren’t they giving me antibiotics to deal with it? Another call to Alison about that one tomorrow I think.
I’ve just been for a two mile walk .I think I feel better for it – but I think I’ll open a bottle of wine anyway…
Sluggish...
...weekend - in all senses of the word. Most of Sunday I felt like a big fat slug on my sofa. I think it was partly to do with the clocks going forward ( See here for the justification of that theory) but there are other excuses like a very busy couple of days on Friday and Saturday, a new bag on Saturday which is hanging on (but a bit sore) - and of course the fact that I'm still recovering from major surgery...
But that's not good enough. I'm being a bit lazier than I should be. I need to get up a bit earlier, make sure I go for a walk each day ( generally weather is no longer an excuse - although it 's pouring with rain this morning!) and start eating more sensibly. Get myself healthy for the chemo like I did for the op.
Talking of chemo, I've got another appointment with Dr Coxon this afternoon - this is my chance to ask all the questions I've still got about the treatment and to try to persuade her/find out if it's possible to have it orally rather than intravenously.
Report to follow.
But that's not good enough. I'm being a bit lazier than I should be. I need to get up a bit earlier, make sure I go for a walk each day ( generally weather is no longer an excuse - although it 's pouring with rain this morning!) and start eating more sensibly. Get myself healthy for the chemo like I did for the op.
Talking of chemo, I've got another appointment with Dr Coxon this afternoon - this is my chance to ask all the questions I've still got about the treatment and to try to persuade her/find out if it's possible to have it orally rather than intravenously.
Report to follow.
Saturday, March 25, 2006
The Enema Within...
Actually it wasn't too bad at all - all done discreetly and professionally. But still - better ways to spend a wet Friday afternoon.
The X-Ray was to check that the surgery had worked - pretty academic for the time being as I know that they won't do the reconnection until the chemo's finished now. But I'll get the results sometime next week anyway.
And last night over to Colpitts in Durham where J was performing her "Per Ardua Ad Astra" piece. It's a brilliant suite of poems about her dad - last year she and I spent a great few Saturdays putting together a music and visual track to go with it and we ran that again last night. I had a few teccy problems ( like running the wrong backing track for a while…) but J was superb! I just love watching and listening to her read her work.
She was supposed to be on with Mat Fraser but he wasn't able to come due to flu. I hope he comes back soon - his stuff is lively, challenging and damn' entertaining.
But Andy Willoughby stepped in at the last moment and read from his new collection, "Tough". Class stuff.
Off with everyone for a qiuick meal afterwards but my late night tiredness caught up with me and so I was glad to get home. Also I find that I tend to develop a really painful back as the day goes on - I think it's down to walking slightly bent forward as if in some way that makes the bag behave better..
Have to change that later ( wish me luck) - I've kept it on for longer this time ( 4 days) because it has been behaving so why mess with it?
Today I've already been up to Newcastle to get my car mirror fixed ( the trip I had to abhort the other day) - going back later for a haircut and a tiny tiny bit of shopping...
Feeling good today. Spring.
The X-Ray was to check that the surgery had worked - pretty academic for the time being as I know that they won't do the reconnection until the chemo's finished now. But I'll get the results sometime next week anyway.
And last night over to Colpitts in Durham where J was performing her "Per Ardua Ad Astra" piece. It's a brilliant suite of poems about her dad - last year she and I spent a great few Saturdays putting together a music and visual track to go with it and we ran that again last night. I had a few teccy problems ( like running the wrong backing track for a while…) but J was superb! I just love watching and listening to her read her work.
She was supposed to be on with Mat Fraser but he wasn't able to come due to flu. I hope he comes back soon - his stuff is lively, challenging and damn' entertaining.
But Andy Willoughby stepped in at the last moment and read from his new collection, "Tough". Class stuff.
Off with everyone for a qiuick meal afterwards but my late night tiredness caught up with me and so I was glad to get home. Also I find that I tend to develop a really painful back as the day goes on - I think it's down to walking slightly bent forward as if in some way that makes the bag behave better..
Have to change that later ( wish me luck) - I've kept it on for longer this time ( 4 days) because it has been behaving so why mess with it?
Today I've already been up to Newcastle to get my car mirror fixed ( the trip I had to abhort the other day) - going back later for a haircut and a tiny tiny bit of shopping...
Feeling good today. Spring.
Friday, March 24, 2006
Redundancy
Well - I got the money into my account this morning. Never had that much in there before - feels like Monopoly money! It'll be a real shame if I have to spend it on subsidising my sick pay for the next 6 months.
But I'm sure there'll be room for a little bit of shopping...
Of course, redundancy's not just affecting me. 700 jobs are going in my local Health Authority. They can produce all the stats they like about efficiency and the like but everytime I go in there I see frantic people doing their very best to maintain a professional service with fewer and fewer resources as it is.
End of sermon.
Another chance to observe it all at first hand this afternoon. My "Contrast Study". ( That's a Barium Enema to you and I...)
But I'm sure there'll be room for a little bit of shopping...
Of course, redundancy's not just affecting me. 700 jobs are going in my local Health Authority. They can produce all the stats they like about efficiency and the like but everytime I go in there I see frantic people doing their very best to maintain a professional service with fewer and fewer resources as it is.
End of sermon.
Another chance to observe it all at first hand this afternoon. My "Contrast Study". ( That's a Barium Enema to you and I...)
Thursday, March 23, 2006
It's Not All Bad You Know (iv)
A great evening out at Patterson's ( ignore the bad reviews here - they were brilliant!) with my team in London. And they gave me a surprise leaving present as well - a briefcase. I was really moved - or was that just too much wine…
The bag behaved itself but I must admit that by 10.30 I was pleased to get back to the hotel room. I was absolutely exhausted. But even though people ( of course) kept asking me how I was, it was good to feel that cancer wasn't taking centre stage for once. Maybe I'm fooling myself, but it felt like that.
But it has also made me realise that I'm not up to regular trips away yet - I just don't have enough confidence or energy. It'll come though.
Slept like a log and then back up on the train this morning. Nap on the train. Nap when I got home.
Oh - and Friends of The Heroes have published three more of my poems!
Wednesday, March 22, 2006
London Bound!
Well, here I am on the train trying to look like any other traveller.
Fingers crossed eh?
Tuesday, March 21, 2006
Bad Bag Day
I was supposed to go up to Newcastle today. Take my car in to get a broken mirror fixed, see a film, do some shopping, get a haircut - you know, normal, non-cancer things. I set off fine ( in a surprise dusting of overnight snow) but as I parked up in front of the garage in Newcastle, I felt the familiar feeling that meant the bag ( fresh on this morning) was leaking.
I was tempted to carry on ( I had my emergency kit with me ) but the leak was too bad, so I got straight back in the car and drove home to clean myself up.
During the rest of the day the bag has leaked another four times so far.
I have such a feeling of wretchedness when this happens. But I WILL get it sorted. I'm sure it's do with the seal itself - but I can't work out what I'm doing wrong - and let's face it I'm getting enough practice!
I'm still supposed to be going to London tomorrow for a work farewell meal. It should be OK - the only pattern to this I notice is that the leaks usually happen on day one - and once a bag holds it's fine on day two. But if it doesn't hold, no London trip for me - and off to the clinic...
I was tempted to carry on ( I had my emergency kit with me ) but the leak was too bad, so I got straight back in the car and drove home to clean myself up.
During the rest of the day the bag has leaked another four times so far.
I have such a feeling of wretchedness when this happens. But I WILL get it sorted. I'm sure it's do with the seal itself - but I can't work out what I'm doing wrong - and let's face it I'm getting enough practice!
I'm still supposed to be going to London tomorrow for a work farewell meal. It should be OK - the only pattern to this I notice is that the leaks usually happen on day one - and once a bag holds it's fine on day two. But if it doesn't hold, no London trip for me - and off to the clinic...
Monday, March 20, 2006
CT scan results
I spoke to Alison the Colorectal Nurse this afternoon.
She said that the abscess is still there but they think that it's smaller. However, Mr Bain isn't prepared to do a reconnection with an abscess still there no matter how small.
On the other hand, Dr Coxon doesn't think that the symptoms of the abscess are significant enough for her to need to delay chemotherapy.
I told Alison that I'd decided to go for chemo ( she knew already - I'd told one of the stoma nurses earlier and she'd blabbed!) but I wanted to talk about having it orally. She's making an appointment for me to see Dr Coxon to talk about that next Monday and, once it's decided which form of chemo I'm going for, then it will probably start the next week.
All in all a slightly better result than I was expecting because the chemo is able to go ahead. Now to try to persuade them about the oral chemo and to get the bag sorted. A few more ideas discussed with the nurse this morning ( which I'll try over the next few days) - but I know they now realise that there's more support they should be giving me to get this sorted. Another result.
She said that the abscess is still there but they think that it's smaller. However, Mr Bain isn't prepared to do a reconnection with an abscess still there no matter how small.
On the other hand, Dr Coxon doesn't think that the symptoms of the abscess are significant enough for her to need to delay chemotherapy.
I told Alison that I'd decided to go for chemo ( she knew already - I'd told one of the stoma nurses earlier and she'd blabbed!) but I wanted to talk about having it orally. She's making an appointment for me to see Dr Coxon to talk about that next Monday and, once it's decided which form of chemo I'm going for, then it will probably start the next week.
All in all a slightly better result than I was expecting because the chemo is able to go ahead. Now to try to persuade them about the oral chemo and to get the bag sorted. A few more ideas discussed with the nurse this morning ( which I'll try over the next few days) - but I know they now realise that there's more support they should be giving me to get this sorted. Another result.
Sunday, March 19, 2006
Decision
After what's felt like a few days of madness, I'm feeling calmer and clearer now. And I've decided about the chemo.
I'm going to have it.
I had a very good conversation with Charlotte, a nurse at Beating Bowel Cancer on Friday. Lots of useful info but the main thing I got from it was a story she told me about another guy in a similar position to me that she was speaking to. He couldn't come to a decision either way so he decided to just flip a coin but then see how he felt about that arbitary decision. It came down against chemo and he realised that he wasn't happy with that as a decision whereas he would have been if it had gone pro chemo. I don't need to toss a coin to know - in the end it's about faith or trust or belief or something.
I'm going to ask if it's possible to have it orally ( I just think I'd prefer the fairly limited but to me important level of personal control that taking my own tablets would give me) - but if not, then I'll go for the monthly cycles that are being offered. Thinking about it, the weekly cycle wouldn't suit me - I'd feel I was never away from chemo. Am going to find out a lot more about complimentary therapies to go with it as well.
And I'm going to ask for a lot more support and help with the bag - I feel I'm doing everything I can but it still just isn't right/reliable - so I want more support from the stoma nurses.
As for work, well I'll do one full cycle off on the sick and then review how I feel and what I want to do.
Of course the only fly in this ointment is the abscess. I had the CT scan on Friday so when I speak to the nurse about my decision on Monday, she'll have the results of that. I suspect that it's still there so there may well be another visit to theatre soon and then a rush to see if it can be sorted within the 12 weeks post op deadline, which is 18 April. If it can't be sorted by then, then well - no chemo for me - but at least I'll still feel clear that I made the decision that I wanted it, even if it wasn't to be.
But who knows? It may be gone anyway.
I'm going to have it.
I had a very good conversation with Charlotte, a nurse at Beating Bowel Cancer on Friday. Lots of useful info but the main thing I got from it was a story she told me about another guy in a similar position to me that she was speaking to. He couldn't come to a decision either way so he decided to just flip a coin but then see how he felt about that arbitary decision. It came down against chemo and he realised that he wasn't happy with that as a decision whereas he would have been if it had gone pro chemo. I don't need to toss a coin to know - in the end it's about faith or trust or belief or something.
I'm going to ask if it's possible to have it orally ( I just think I'd prefer the fairly limited but to me important level of personal control that taking my own tablets would give me) - but if not, then I'll go for the monthly cycles that are being offered. Thinking about it, the weekly cycle wouldn't suit me - I'd feel I was never away from chemo. Am going to find out a lot more about complimentary therapies to go with it as well.
And I'm going to ask for a lot more support and help with the bag - I feel I'm doing everything I can but it still just isn't right/reliable - so I want more support from the stoma nurses.
As for work, well I'll do one full cycle off on the sick and then review how I feel and what I want to do.
Of course the only fly in this ointment is the abscess. I had the CT scan on Friday so when I speak to the nurse about my decision on Monday, she'll have the results of that. I suspect that it's still there so there may well be another visit to theatre soon and then a rush to see if it can be sorted within the 12 weeks post op deadline, which is 18 April. If it can't be sorted by then, then well - no chemo for me - but at least I'll still feel clear that I made the decision that I wanted it, even if it wasn't to be.
But who knows? It may be gone anyway.
Thursday, March 16, 2006
Discussions
Great evening down at J's last night - we watched a DVD of Best Laid Plans. I'd not heard of it before - but it was really good.
I had a long and really useful chat yesterday afternoon with I who was the man who Beating Bowel Cancer had put me in touch with. He'd had his 5FU about 3 years ago and is still clear. It was just really good to talk to someone who understands the language you're talking and the nature of the decision you're trying to make.
Main things from the conversation were:
So - as I say, a really useful conversation. ( Thanks I. )
The other conversation was this morning with Alison the Colorectal Nurse. It's her who'll ring me for my decision on Monday but I had a few questions I wanted to ask in the meantime. Yet again, another very useful chat.
Not sure where all this leaves me really. I think I'm still pretty much pro chemo - but I think I want to try to find out more about the oral and weekly options if they are available.
The other thing I need to think about it whether I may just have to accept that I'll need to be off work for the whole 6 months - and of course, whether my new firm will accept that . They've been great so far and confirmed just the other day that I can still join them on April 3rd - but on the sick. And of course that's just Statutary Sick Pay - so from then on I'm effectively subsidising myself from my redundancy. But if it comes down to it, I could afford to do that for 6 months. I'd just have to forget about the new car...
I had a long and really useful chat yesterday afternoon with I who was the man who Beating Bowel Cancer had put me in touch with. He'd had his 5FU about 3 years ago and is still clear. It was just really good to talk to someone who understands the language you're talking and the nature of the decision you're trying to make.
Main things from the conversation were:
- He'd had his chemo intravenously but weekly on one day a week over 40 weeks rather than the 5-days-a-week-in-a-month that they'e offering me. Interestingly, his was done privately ( at home too!) though Dr Dobrowski in Newcastle who regular readers might remember is the consultant who oversaw my pre-op radiotherapy. He said he found it very manageable with few side effects, except for getting very tired - and the advice that he'd got was that it tended to be a more tolerated treatment. ( This is born out by what Alison said - see below)
- He didn't work through his chemo and his feeling was that doing anything like a stressful job would be difficult while having chemo.
- We also talked a lot about colostomies/ileostomies and leakage problems. He uses a two-piece set up for his colostomy - one element of which sticks to your tummy and the other bit which is the bag itself. So when you change the bag, you just change the bag - not the whole set up - at least not every day. He says it's a lot more straightforward and, most importantly, he's not had a single leak in the last year! He gave me the contact for the firm who supplies his - but I'll also ask my stoma nurse about them as well. ( The Cohesive Rings also arrived from Denise today - I'll try those later.)
So - as I say, a really useful conversation. ( Thanks I. )
The other conversation was this morning with Alison the Colorectal Nurse. It's her who'll ring me for my decision on Monday but I had a few questions I wanted to ask in the meantime. Yet again, another very useful chat.
- I asked her about the possibility of having the chemo weekly, instead of monthly. She said, yes that might be possible, but they tended to recommend the monthly cycle to comparitively young patients like me, because in her view, it was slightly more effective delivered that way, although she admitted that it was a rougher ride. She said that the side effects tend to kick in towards the end of the week after actual chemo week but that generally the last two weeks are OK.
- She also said that most people didn't work through chemo - although she does have one patient who's a head teacher ( a comparible job in terms of stress to mine) who's working all the way through. ( Interestingly, he's on the oral form... )
- ...I asked her about that - as I've heard a lot about that from Ann in the USA who's on oral 5FU. Alison says that in this country they're only licenced to use the oral form on colon cancer patients - and as we now know, I''ve got rectal cancer... But she did say that it might be worth a conversation with Dr Coxon the oncologist about it. When oral chemo had come up in the conversation with I yesterday, he said that he'd heard that it made you very sick. Alison disagreed but said that the side effects were different - in particular, you were much more likely to get sore hands with the oral form.
- I took the chance to ask a bit more about reconnection as well - no matter when I have it. She confirmed that it's a relatively simple op but that it could take a couple of months afterwards for my bowel to settle down. Well, that bit's unavoidable I suppose - but I didn't realise that it might take that long...
Not sure where all this leaves me really. I think I'm still pretty much pro chemo - but I think I want to try to find out more about the oral and weekly options if they are available.
The other thing I need to think about it whether I may just have to accept that I'll need to be off work for the whole 6 months - and of course, whether my new firm will accept that . They've been great so far and confirmed just the other day that I can still join them on April 3rd - but on the sick. And of course that's just Statutary Sick Pay - so from then on I'm effectively subsidising myself from my redundancy. But if it comes down to it, I could afford to do that for 6 months. I'd just have to forget about the new car...
Benjamin Sebastian James
Vero and Natty practice Volume Control with Benjamin.
Unsuccessfully, it appears...
Wednesday, March 15, 2006
Chemo Summary
Yeah - I know I said there wouldn't be anything else from me today. (Boys lie...)
I followed another link from the site that Topsy found -and came upon this as quite a neat summary:
"Adjuvant chemotherapy for cancer is a difficult treatment to understand. As one patient said: " You are suggesting that I have treatment which will make me temporarily unwell, to treat cancer that you can't find, and can't be sure you have eliminated even when treatment is finished". That is what adjuvant treatment is about. It is similar to life insurance. When you pay your premiums to the insurance company, you are recognizing a potential risk to your life that may or may not happen (car crash, sickness, earthquake, hurricane, etc.). Treatment with adjuvant chemotherapy is designed to reduce the risk of cancer returning. Large scale clinical trials have shown significant benefit from adjuvant therapy for patients with breast cancer, colon cancer, testicular cancer, lymphomas, etc. However, like so many things in life, adjuvant therapy does not come with a written guarantee. In spite of this "no guarantee" clause; when the length of time on treatment along with its side effects are balanced with the possible benefits such as a longer life, then for most patients eligible for treatment the benefits usually outweigh the risks. "
I followed another link from the site that Topsy found -and came upon this as quite a neat summary:
"Adjuvant chemotherapy for cancer is a difficult treatment to understand. As one patient said: " You are suggesting that I have treatment which will make me temporarily unwell, to treat cancer that you can't find, and can't be sure you have eliminated even when treatment is finished". That is what adjuvant treatment is about. It is similar to life insurance. When you pay your premiums to the insurance company, you are recognizing a potential risk to your life that may or may not happen (car crash, sickness, earthquake, hurricane, etc.). Treatment with adjuvant chemotherapy is designed to reduce the risk of cancer returning. Large scale clinical trials have shown significant benefit from adjuvant therapy for patients with breast cancer, colon cancer, testicular cancer, lymphomas, etc. However, like so many things in life, adjuvant therapy does not come with a written guarantee. In spite of this "no guarantee" clause; when the length of time on treatment along with its side effects are balanced with the possible benefits such as a longer life, then for most patients eligible for treatment the benefits usually outweigh the risks. "
Energy
Really low energy today - although I slept well, I had quite bad night sweats again. That, combined with a return of some of the pain ( not as bad as before but still there) makes me think that the abscess is still there - I suppose that the CT scan on Friday will tell. I'm beginning to think that it would be ironic if, after all this to-ing and fro-ing over the chemo, it ended up that I couldn't have it simply because the abscess wasn't sorted...
Today it feels like I'm just worn out from all the thinking.
My mood also hasn't been helped by the fact that the ( freshly changed) bag leaked on me 5 minutes before I was supposed to be going to see my GP to get a sicknote and prescription this morning. Much swearing and rushing around had a new bag on me in record time and I got to see the doc because he was running late anyway.
However, as soon as I got home, the bag leaked again! I've been trying to maintain a zen attitude to this today as practice if I do decide to go for the chemo and have to have the bag for the next 6 months. Not easy though.
I have a feeling that today's leakages are caused by a blockage ( which I think has cleared now). That's when your system hasn't sufficiently processed food by the time it's gone through you so it just blocks the stoma. (It's the reason I have to avoid sweetcorn and nuts.) Must remember to chew...
Anyway - I'm going over to J's tonight which will be nice but before that I think I'm going into a bit of purdah. So apologies to anybody who emailed me overnight - I'll get back to you soon.
xx
Today it feels like I'm just worn out from all the thinking.
My mood also hasn't been helped by the fact that the ( freshly changed) bag leaked on me 5 minutes before I was supposed to be going to see my GP to get a sicknote and prescription this morning. Much swearing and rushing around had a new bag on me in record time and I got to see the doc because he was running late anyway.
However, as soon as I got home, the bag leaked again! I've been trying to maintain a zen attitude to this today as practice if I do decide to go for the chemo and have to have the bag for the next 6 months. Not easy though.
I have a feeling that today's leakages are caused by a blockage ( which I think has cleared now). That's when your system hasn't sufficiently processed food by the time it's gone through you so it just blocks the stoma. (It's the reason I have to avoid sweetcorn and nuts.) Must remember to chew...
Anyway - I'm going over to J's tonight which will be nice but before that I think I'm going into a bit of purdah. So apologies to anybody who emailed me overnight - I'll get back to you soon.
xx
Tuesday, March 14, 2006
The Blog from Uncle (ii)
Just spoken to A, my younger brother.
My new nephew is going to be called Benjamin Sebastian.
Ben. I like that.
My new nephew is going to be called Benjamin Sebastian.
Ben. I like that.
To Chemo or Not to Chemo
First of all, thanks so much to everybody who’s been in touch with information, comments and views today – they really are appreciated.
There was a point today where I thought I was approaching information overload, but in the end, I think I got through that and feel – well, just more informed today.
As a result, I’m definitely more pro chemo than I was yesterday . There are a number of reasons for that:
However, in spite of all that, I fully expect to have changed my mind all over again tomorrow.
Other news – I’ve got my CT scan appointment through now. Friday. And the Contrast Study appointment for Friday week. Of course, you know another name for a Contrast Study is a Barium Enema…
And finally. After 49 days I had my first glass of red wine last night. Well – half of it. I’d had enough by then!
There was a point today where I thought I was approaching information overload, but in the end, I think I got through that and feel – well, just more informed today.
As a result, I’m definitely more pro chemo than I was yesterday . There are a number of reasons for that:
- Several people have reassured me from personal or close experience that the chemo really isn’t that bad. ( The Beating Bowel Cancer people have put me in touch with someone fairly local who’s had 5FU treatment – I’m going to call him tomorrow.)
- There’s a logic about going for chemotherapy that simply can’t be denied. ( 10% is 10% after all – even if I don’t quite understand what it’s 10% of…) Of course, the final decision will hopefully be one where logic and instinct coincide.
- The Bag. I’ve been thinking a lot about whether it’s my dislike of the bag that’s really behind all this. In a way it is, I suppose, but I don’t feel like that’s the whole reason. Anyway, I was discussing bags and stuff with Peter, who’s had an 8 month start on his ileostomy from me and he told me about a thing called a Cohesive Ring, which is basically a washer that helps to further seal the bag to you, meaning less leaks. I spoke to Denise my Stoma Nurse about it today and she’s going to put a few in the post to me so that I can try them out. I reckon that if I can find something that could up my level of confidence in the bag, that might help?
However, in spite of all that, I fully expect to have changed my mind all over again tomorrow.
Other news – I’ve got my CT scan appointment through now. Friday. And the Contrast Study appointment for Friday week. Of course, you know another name for a Contrast Study is a Barium Enema…
And finally. After 49 days I had my first glass of red wine last night. Well – half of it. I’d had enough by then!
Rectal Cancer
Thanks everybody for your comments and questions and challenges whether on the blog or off it. Particular thanks to Jan in Australia who must have been up half the night finding me loads of references.
This one is particularly useful - the Full Monty on rectal cancer. The striking thing is that it says that the stats for rectal cancer survival rates are about the same as for colon cancer - and says that survival is increased by 15% if you have chemo.
If it helps while you're reading it, remember, I've got Stage III rectal cancer. ( Thanks to Debbie for that link.)
This one is particularly useful - the Full Monty on rectal cancer. The striking thing is that it says that the stats for rectal cancer survival rates are about the same as for colon cancer - and says that survival is increased by 15% if you have chemo.
If it helps while you're reading it, remember, I've got Stage III rectal cancer. ( Thanks to Debbie for that link.)
Monday, March 13, 2006
Decisions
A bad night last night - the bag leaked on me while I was in bed so I had to be up to change myself and the bag at about 1.00am. And it was SO bloody cold!
Then up to Newcastle to take my car in for MOT and service this morning ( I'm picking it up later this afternoon - they've given me a rather nice little Corsa as a courtesy car) and a quick call in to see M & K in my office. Nice to see them and to catch up. Other things being equal, I'm going to go down to London next week for the final team meal - M is going to travel down on the same train with me.
Next stop was the hospital and my chemotherapy discussion with Dr Coxon the oncologist. Another straight talker - which was good. But she's left me with some big decisions to make in the next week.
Starting from the top then:
I now discover that the operation was for rectal cancer as opposed to colon cancer - I think I'd got confused because both bits comprise your bowel. The distinction is important because they seem to know a lot more about the recurrence rates of colon cancer than rectal cancer.
Anyway - the operation meant that I have a 50/50 chance of cancer recurring. Evens.
The standard UK chemotherapy treatment is something called 5FU - 6 cycles of treatment - each cycle comprising one week ( 5 mornings ) of intravenous administration of the drugs and three weeks recovery. So - 6 months in all. Some side effects - but you can read about those in the link above.
Having this treatment will mean that my chances of cancer recurring are reduced by between another 5 and 13% but, remember, this is for colon cancer - they don't have specific stats for rectal cancer. And they can't tell me about the additional benfits that the radiotherapy might have given me - again, no research..
So -the operation and chemo combination mean that it's up to 60/40 against the cancer recurring.
But it's only averages isn't it? No-one can translate that into my life for me.
She was very clear that she thought it was really pushing it to try for a re-connection and to start the chemo within the next 5 weeks but well, we'll come back to that...
She's left the decision with me - Alison the Colorectal Nurse will ring me for my decision on Monday. By then they'll also have the results of the CT scan ( probably have that on Friday) - because if I've still got the abscess, then neither the chemo or a re-connection can go ahead.
She did make it very clear that I could decide not to go ahead with the chemo and " just get on with your life...". Of course, they'd continue to monitor me really closely anyway. The cancer spreading to my liver is the thing they really worry about.
And, you know, the " just getting on with the rest of my life" option suddenly feels like one I should consider. Not just because of having to put up with 6 months more of the bag - but also because of the percentages. I can't translate them into anything meaningful - they seem to be based on a really wide range of different cancer patients ( old/young, fit/unfit, advanced/early cancer) AND they relate to colon cancer not rectal cancer.
( A job for this afternoon is to look up the rectal cancer/chemo research on Google)
On the other hand, there's something a lot more meaningful about getting on with my life and having the reconnection ASAP, starting the new job with all my energy, keeping myself fit, getting checked regularly, maybe investigating alternative therapies - I dunno - just going for it!
And forget the chemo...
Another research task is to see if I can find out about the proportion of people in my situation who don't take up the chemo option post-op.
One idea I just talked to J about was to say that I wanted to go for the reconnection anyway and see if there was a chance that I could still fit in the chemo within the next 5 weeks. If you like, saying to the hospital that I'll take the chance if they will.. And if I can't have the chemo in time then so be it.
But even that seems a bit unsatisfactory - it's not really a decision about whether I really want to go for chemo - it sort of makes it by default. If I am going to put up with the chemo and all it's unknowns in terms of side effects and, in a way have to (counter-intuitively) be a passive recipient of it for 6 months, then at the very least I'll need to believe in it as a treatment.And I'm not sure I do at the moment. My instinct is to believe in myself and my own strength.
Lots more talking and thinking to do this week. All views gratefully received.
Then up to Newcastle to take my car in for MOT and service this morning ( I'm picking it up later this afternoon - they've given me a rather nice little Corsa as a courtesy car) and a quick call in to see M & K in my office. Nice to see them and to catch up. Other things being equal, I'm going to go down to London next week for the final team meal - M is going to travel down on the same train with me.
Next stop was the hospital and my chemotherapy discussion with Dr Coxon the oncologist. Another straight talker - which was good. But she's left me with some big decisions to make in the next week.
Starting from the top then:
I now discover that the operation was for rectal cancer as opposed to colon cancer - I think I'd got confused because both bits comprise your bowel. The distinction is important because they seem to know a lot more about the recurrence rates of colon cancer than rectal cancer.
Anyway - the operation meant that I have a 50/50 chance of cancer recurring. Evens.
The standard UK chemotherapy treatment is something called 5FU - 6 cycles of treatment - each cycle comprising one week ( 5 mornings ) of intravenous administration of the drugs and three weeks recovery. So - 6 months in all. Some side effects - but you can read about those in the link above.
Having this treatment will mean that my chances of cancer recurring are reduced by between another 5 and 13% but, remember, this is for colon cancer - they don't have specific stats for rectal cancer. And they can't tell me about the additional benfits that the radiotherapy might have given me - again, no research..
So -the operation and chemo combination mean that it's up to 60/40 against the cancer recurring.
But it's only averages isn't it? No-one can translate that into my life for me.
She was very clear that she thought it was really pushing it to try for a re-connection and to start the chemo within the next 5 weeks but well, we'll come back to that...
She's left the decision with me - Alison the Colorectal Nurse will ring me for my decision on Monday. By then they'll also have the results of the CT scan ( probably have that on Friday) - because if I've still got the abscess, then neither the chemo or a re-connection can go ahead.
She did make it very clear that I could decide not to go ahead with the chemo and " just get on with your life...". Of course, they'd continue to monitor me really closely anyway. The cancer spreading to my liver is the thing they really worry about.
And, you know, the " just getting on with the rest of my life" option suddenly feels like one I should consider. Not just because of having to put up with 6 months more of the bag - but also because of the percentages. I can't translate them into anything meaningful - they seem to be based on a really wide range of different cancer patients ( old/young, fit/unfit, advanced/early cancer) AND they relate to colon cancer not rectal cancer.
( A job for this afternoon is to look up the rectal cancer/chemo research on Google)
On the other hand, there's something a lot more meaningful about getting on with my life and having the reconnection ASAP, starting the new job with all my energy, keeping myself fit, getting checked regularly, maybe investigating alternative therapies - I dunno - just going for it!
And forget the chemo...
Another research task is to see if I can find out about the proportion of people in my situation who don't take up the chemo option post-op.
One idea I just talked to J about was to say that I wanted to go for the reconnection anyway and see if there was a chance that I could still fit in the chemo within the next 5 weeks. If you like, saying to the hospital that I'll take the chance if they will.. And if I can't have the chemo in time then so be it.
But even that seems a bit unsatisfactory - it's not really a decision about whether I really want to go for chemo - it sort of makes it by default. If I am going to put up with the chemo and all it's unknowns in terms of side effects and, in a way have to (counter-intuitively) be a passive recipient of it for 6 months, then at the very least I'll need to believe in it as a treatment.And I'm not sure I do at the moment. My instinct is to believe in myself and my own strength.
Lots more talking and thinking to do this week. All views gratefully received.
Sunday, March 12, 2006
The Blog From Uncle!
I've just heard that my youngest brother and his wife have just had their second baby - another little boy weighing in at nearly 10lbs! There is a shortlist for a name but no final decision yet.
It's snowed here most of the day - but I had a lovely visit from J and her daughters this morning en route to visiting family in Whitley Bay - and this afternoon my friend S called in.
Up early tomorrow ( hope the snow has cleared a bit) - got to take my car for its MOT and service and I have an appointment with the oncologist to discuss my chemo.
So - another early night I think.
It's snowed here most of the day - but I had a lovely visit from J and her daughters this morning en route to visiting family in Whitley Bay - and this afternoon my friend S called in.
Up early tomorrow ( hope the snow has cleared a bit) - got to take my car for its MOT and service and I have an appointment with the oncologist to discuss my chemo.
So - another early night I think.
Saturday, March 11, 2006
I Know Why The Caged Bear Howls...
Well - whatever the technical problem with my internet connection was yesterday ( the one that had me on the phone for about an hour to a very nice man called Raj on the Wanadoo helpline in India ) has resolved itself. I was convinced that it was something to do with them and not me but of course, Raj in his full systematic corporate politeness wasn't having it...
Anyway - I can't go out for a walk yet as it's snowing, so I've finally got round to editing some of the poems that I did in hospital.
The overriding image I had in my head ( and hence the title of most of these) was to do with caged bears. If you go into the wards at the hospital (and I'm sure they're all pretty similar) you see small bays of six beds, each with the possibility of enclosure with curtains. And by ( or in ) each bed is a patient - in my case they were all men. ( It'd be interesting to see if the image is as strong in a women's ward.) As people get better, they get out of bed and into their chair and then the next step is to walk round the bed. After that, you venture further afield - but you always return to your bedspace. Your territory. Your cage.
So - with apologies to Maya Angelou:
Anyway - I can't go out for a walk yet as it's snowing, so I've finally got round to editing some of the poems that I did in hospital.
The overriding image I had in my head ( and hence the title of most of these) was to do with caged bears. If you go into the wards at the hospital (and I'm sure they're all pretty similar) you see small bays of six beds, each with the possibility of enclosure with curtains. And by ( or in ) each bed is a patient - in my case they were all men. ( It'd be interesting to see if the image is as strong in a women's ward.) As people get better, they get out of bed and into their chair and then the next step is to walk round the bed. After that, you venture further afield - but you always return to your bedspace. Your territory. Your cage.
So - with apologies to Maya Angelou:
Caged Bears In The Afternoon
Frank giggles away at The Journal.
Brian’s just come in
I sleep through other people’s visitors
Get better.
Caged Bears in The Night
The Caged Bear Frowns
He knows it’s unreasonable
Shy Bairns Get Nowt
Billy and Bobby explode
Of our quiet afternoon
In clouds of complaint:
The ward is too hot
The nurses are ignoring them
The telly doesn’t work
They are in pain
I quietly seethe
Tulips
Petal by petal they’ve fallen
Sectioned like blood oranges
A fresh green stamen is exposed
Dark pollen spreads
Outside
A squirrel dances in the air.
Friday, March 10, 2006
Mileage!
Technical problems with my PC internet connection today - not sure why that is - it was fine last night. So I'm doing this via the ipaq tonight and will try and sort it tomorrow.
A fairly slow day - J was over last night and we had a lovely evening - but she had to leave early so I was up at about 7.
Anyway - one major achievement today. Every day this week I've gone for a walk and tried to go a bit further each day. Today I managed a full two miles! It was probably a bit more than I should have done but I have a great sense of achievement from doing it - as well as sore legs!
So - a quiet evening tonight and probably an early night.
But first - fish and chips...
Thursday, March 09, 2006
Wednesday, March 08, 2006
Best part of the day.
Just got up - had a fairly good night's sleep. In bed by 10 and woke at 12, 3 and 6 to empty the bag but in between I slept quite well - I always get back to sleep afterwards and the night sweats weren't so bad last night.
But it is a chore. I'm always glad when the night is over and I can get up. Normally I'm not a great one for lying in so I suppose that makes sense.
Now I'm up, dressed, washed and shaved and breakfasted. Bag all sorted. As usual, not a huge amount to do this morning - a trip to the Post Office, pick up a prescription, a walk, read a bit, make a few calls and emails. Most likely a nap.
But it's definitely the best part of the day.
But it is a chore. I'm always glad when the night is over and I can get up. Normally I'm not a great one for lying in so I suppose that makes sense.
Now I'm up, dressed, washed and shaved and breakfasted. Bag all sorted. As usual, not a huge amount to do this morning - a trip to the Post Office, pick up a prescription, a walk, read a bit, make a few calls and emails. Most likely a nap.
But it's definitely the best part of the day.
Tuesday, March 07, 2006
Bagburster Bain!
Up sharp this morning ( to a dusting of snow) for my appointment on the ward with Mr Bain.
It was supposed to be at 8.30 but of course, there was the usual game of hunt-the-consultant before he showed up at about 9.30. A quick poke at my tummy before the conversation - more about that later...
I mentioned to him about the night sweats and he said he thought that that was probably related to the abscess - which he thinks is still there, although a lot smaller. I told him that I had a good deal less pain from it now.
I also asked him about the possibility of bringing the reconnection forward before the chemo. He said he understood my point of view and was sympathetic but actually tthe issue at the moment was that they wouldn't be able to either start the chemo or do a reconnection while I still had the abscess.
He decided that he was going to do a physical examination there and then so took me off to one of the side rooms. When I took my trousers off, I discovered that the bag had burst as a result of his prodding earlier and I had a go at him about it. I must say he was very contrite and apologised - but it actually gave me a chance to make the point about not ever quite knowing the circumstances in which the bag might go. ( OK - a direct assault from your consultant is a bit unusual...)
He called a nurse to get me a new bag sorted but as it wasn't too bad and I didn't have a template with me, I just said to do the examination and I'd sort myself out when I got home. So - the usual painful poke in the bum - but actually maybne not quite as agonising as before. ( Unless I'm just getting used to it that is...)
He said that he thought it was still there but much smaller.
The upshot is that he's going to book me in for a CT scan ( to see what the abscess is looking like) and a Contrast Study ( to check that there are no leakages in the resection) in the next few days and then use the results of those to make a judgement about doing the reconnection before the chemo. But when I asked him specifically, he said that he wasn't ruling out the idea of doing the reconnection first, which as far as I'm concerned, is very positive. As ever, once I got to pin him down, I do get the impression that he listens to me.
But "Bagburster" is now his nickname as far as I'm concerned...
Apart from all that, it's been a pretty good few days - I'm managing to get more done around the house ( including putting my dustbin out last night) and I'm making sure I walk a little bit further each day.
But now - a short nap before lunch I think!
It was supposed to be at 8.30 but of course, there was the usual game of hunt-the-consultant before he showed up at about 9.30. A quick poke at my tummy before the conversation - more about that later...
I mentioned to him about the night sweats and he said he thought that that was probably related to the abscess - which he thinks is still there, although a lot smaller. I told him that I had a good deal less pain from it now.
I also asked him about the possibility of bringing the reconnection forward before the chemo. He said he understood my point of view and was sympathetic but actually tthe issue at the moment was that they wouldn't be able to either start the chemo or do a reconnection while I still had the abscess.
He decided that he was going to do a physical examination there and then so took me off to one of the side rooms. When I took my trousers off, I discovered that the bag had burst as a result of his prodding earlier and I had a go at him about it. I must say he was very contrite and apologised - but it actually gave me a chance to make the point about not ever quite knowing the circumstances in which the bag might go. ( OK - a direct assault from your consultant is a bit unusual...)
He called a nurse to get me a new bag sorted but as it wasn't too bad and I didn't have a template with me, I just said to do the examination and I'd sort myself out when I got home. So - the usual painful poke in the bum - but actually maybne not quite as agonising as before. ( Unless I'm just getting used to it that is...)
He said that he thought it was still there but much smaller.
The upshot is that he's going to book me in for a CT scan ( to see what the abscess is looking like) and a Contrast Study ( to check that there are no leakages in the resection) in the next few days and then use the results of those to make a judgement about doing the reconnection before the chemo. But when I asked him specifically, he said that he wasn't ruling out the idea of doing the reconnection first, which as far as I'm concerned, is very positive. As ever, once I got to pin him down, I do get the impression that he listens to me.
But "Bagburster" is now his nickname as far as I'm concerned...
Apart from all that, it's been a pretty good few days - I'm managing to get more done around the house ( including putting my dustbin out last night) and I'm making sure I walk a little bit further each day.
But now - a short nap before lunch I think!
Sunday, March 05, 2006
The Secret Society
My friends J and J came over for a visit last night - lovely to see them.
They told me about this brilliant article in the Guardian by Nick Carter last week.
Class!
They told me about this brilliant article in the Guardian by Nick Carter last week.
Class!
Saturday, March 04, 2006
Driving
Yep - that's what I said.
This morning over breakfast, J and I were just planning a trip to Tesco's to get me some trousers ( All of my current ones just feel a bit uncomfortable with the bag - I think I said I've taken to wearing really old baggy shorts around the house...) and I was saying that it'd be great when I'd be able to drive myself and that I could probably have a go next Tuesday as it's 6 weeks after the op.
She said " Why not this morning?"
So I did. Drove the 7 miles to the supermarket - OK a bit more slowly than usual, but no discomfort at all! And we got the trousers!
J drove us back as I was pretty worn out by then but it gave me so much confidence to have done it - and J said that it was great to see me looking more like my old self behind the wheel. This doesn't mean I'm going to be leaping into the car every five minutes from now on but it is great to know that it's there as an option from now on - and a do feel like it's a real step forward in my recovery, especially after such an up and down week.
For those of you who are following the saga - bag still behaving, by the way..
This morning over breakfast, J and I were just planning a trip to Tesco's to get me some trousers ( All of my current ones just feel a bit uncomfortable with the bag - I think I said I've taken to wearing really old baggy shorts around the house...) and I was saying that it'd be great when I'd be able to drive myself and that I could probably have a go next Tuesday as it's 6 weeks after the op.
She said " Why not this morning?"
So I did. Drove the 7 miles to the supermarket - OK a bit more slowly than usual, but no discomfort at all! And we got the trousers!
J drove us back as I was pretty worn out by then but it gave me so much confidence to have done it - and J said that it was great to see me looking more like my old self behind the wheel. This doesn't mean I'm going to be leaping into the car every five minutes from now on but it is great to know that it's there as an option from now on - and a do feel like it's a real step forward in my recovery, especially after such an up and down week.
For those of you who are following the saga - bag still behaving, by the way..
Friday, March 03, 2006
Early Days?
And of course, it all endly badly last night!
I was just getting into bed, having just emptied the bag when suddenly it seemed to refill quite quickly and then burst, making a mess everywhere. I was really shocked - it seemed to happen from nowhere with no warning. But of course I buckled down and re-did the bag.
It waas only when I got back into bed that I got really hit by the glums and burst in to tears. I mean - in less than 2 months I expect to be back doing my new, highly pressured, very active job. I need to be able to rely on the bag absolutely - and I don't feel I can at the moment. I think that, combined with the fact that day had tended to drag for the first time as it had gone on, just got to me.
I rang J and she was great at just listening to me - and really agreeing that this is not good enough. We decided that I should talk to Mr Bain next week about the possibility of being reconnected before the chemo - as far as I understand it, there's no particularly strong medical reason why they shouldn't ( in fact I know of two other patients with similar conditions while I was in who were reconnected - or indeed, in one case, never disconnected. I seem to recall Mr Bain mentioning it himself as an option back in December) - it's just that reconnection-as-the-last-bit tends to be the norm.
In the end I slept quite well ( a few audiobook chapters of The Da Vinci Code are a remarkable aid to sleep...) and woke up this morning feeling refreshed and having had no problems with the bag.
I spoke to Lynn, one of the Stoma Nurses later in the morning and she thought that it was probably a very slight adjustment to the bag template that Sue and I made yesterday that might have caused it. She suggested that I went back to the earlier template. Makes sense.
But she did say that it's "early days" still. Is it? It's not really feeling like that to me - 6 weeks post op? I know I've had a couple of setbacks but I don't feel that it's early days at all. Is that so wrong?
I've got J ( the other one) my counsellor coming over later this afternoon. Might try to talk about that with her.
Oh - and It's Never All Bad News is it? Just had three more poems published - this time on a website called Friends of The Heroes. They say they'll publish some more next week.
Now for my Poirot nap...
I was just getting into bed, having just emptied the bag when suddenly it seemed to refill quite quickly and then burst, making a mess everywhere. I was really shocked - it seemed to happen from nowhere with no warning. But of course I buckled down and re-did the bag.
It waas only when I got back into bed that I got really hit by the glums and burst in to tears. I mean - in less than 2 months I expect to be back doing my new, highly pressured, very active job. I need to be able to rely on the bag absolutely - and I don't feel I can at the moment. I think that, combined with the fact that day had tended to drag for the first time as it had gone on, just got to me.
I rang J and she was great at just listening to me - and really agreeing that this is not good enough. We decided that I should talk to Mr Bain next week about the possibility of being reconnected before the chemo - as far as I understand it, there's no particularly strong medical reason why they shouldn't ( in fact I know of two other patients with similar conditions while I was in who were reconnected - or indeed, in one case, never disconnected. I seem to recall Mr Bain mentioning it himself as an option back in December) - it's just that reconnection-as-the-last-bit tends to be the norm.
In the end I slept quite well ( a few audiobook chapters of The Da Vinci Code are a remarkable aid to sleep...) and woke up this morning feeling refreshed and having had no problems with the bag.
I spoke to Lynn, one of the Stoma Nurses later in the morning and she thought that it was probably a very slight adjustment to the bag template that Sue and I made yesterday that might have caused it. She suggested that I went back to the earlier template. Makes sense.
But she did say that it's "early days" still. Is it? It's not really feeling like that to me - 6 weeks post op? I know I've had a couple of setbacks but I don't feel that it's early days at all. Is that so wrong?
I've got J ( the other one) my counsellor coming over later this afternoon. Might try to talk about that with her.
Oh - and It's Never All Bad News is it? Just had three more poems published - this time on a website called Friends of The Heroes. They say they'll publish some more next week.
Now for my Poirot nap...
Thursday, March 02, 2006
Limbo Days
A lovely evening with J last night - supper and chat and telly.
We've talked a lot about the idea of turning the corner with my recovery. I know I need to be very careful not to be thinking it's happened before it has and overdoing things. But I am feeling stronger and certainly a lot more painfree - I walked down to the Co-op this morning and wasn't quite so worn out when I got back. ( The only hard bit was having to stand around in the queue in the shop without my stool - amazingly tiring!)
But before I'm sure that the corner has turned I feel in these sort of limbo days where hours can go by and all I seem to have done is napped or watched some daytime TV ( The re-runs of Poirot are a particular current favourite - I always wake in time for the denouement..) or put a bit of washing through. I don't get bored - just sort of frozen. Amazingly guiltless though.
A funny thing to have to sit through nonetheless - knowing things are getting better - but knowing I'm not better. Yet.
Not sure that makes much sense.
Anyway -Stoma Nurse Sue called this morning - checked the stoma for me and said that everything looked fine. She won't do another home visit unless I ask for one - but will book me in for a clinic appointment next month. That's progress isn't it? I mentioned about the night sweats but she didn't really have any ideas - she suggested ringing Alison the Colorectal Nurse to ask her. I might do that or wait and ask Mr Bain at my check up next Tuesday.
Oh - and talking of next Tuesday, she confirmed that as that will be 6 weeks after my op, I'll be alright to see if I can do an emergency stop in the car. If I'm OK and painfree from that, I can start driving again!
We've talked a lot about the idea of turning the corner with my recovery. I know I need to be very careful not to be thinking it's happened before it has and overdoing things. But I am feeling stronger and certainly a lot more painfree - I walked down to the Co-op this morning and wasn't quite so worn out when I got back. ( The only hard bit was having to stand around in the queue in the shop without my stool - amazingly tiring!)
But before I'm sure that the corner has turned I feel in these sort of limbo days where hours can go by and all I seem to have done is napped or watched some daytime TV ( The re-runs of Poirot are a particular current favourite - I always wake in time for the denouement..) or put a bit of washing through. I don't get bored - just sort of frozen. Amazingly guiltless though.
A funny thing to have to sit through nonetheless - knowing things are getting better - but knowing I'm not better. Yet.
Not sure that makes much sense.
Anyway -Stoma Nurse Sue called this morning - checked the stoma for me and said that everything looked fine. She won't do another home visit unless I ask for one - but will book me in for a clinic appointment next month. That's progress isn't it? I mentioned about the night sweats but she didn't really have any ideas - she suggested ringing Alison the Colorectal Nurse to ask her. I might do that or wait and ask Mr Bain at my check up next Tuesday.
Oh - and talking of next Tuesday, she confirmed that as that will be 6 weeks after my op, I'll be alright to see if I can do an emergency stop in the car. If I'm OK and painfree from that, I can start driving again!
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