So, since feeling odd I decided not to chance Cabaret last night. I didn't like the thought of being trapped in the middle of a row of seats and unable to leave quickly and easily if I felt the need. And even if I hadn't actually felt the need I would have spent all night worrying about it and so not enjoyed myself. For the same reason I'm not going to Jesus Christ Superstar tonight either. Its a real shame but there you go. Reports say that Will Young (and the production) was superb whilst Sally Bowles was less so. Sian Williams (playing the landlady) was also very good. I'd forgotten that the stage play differs quite a bit from the film and the landlady has a more major role.
Have felt not too good for most of today. I did a drain this morning which produced minimal fluids but which didn't leave me feeling much better. Perked up a bit this afternoon when Lesley visited and following an Ensure Plus.
I appear to have lost my appetite for Ensure Pluses and am trying to make myself drink them but even so I'm not having as many as I would normally. This, of course, goes some way to explaining the weight loss. Its over a stone and a half now and I don't want to lose any more so I'm trying my best to keep eating. If anyone has any bright ideas on this (given all my known limitations) then please feel free to share.
Have left message for cancer nurse to phone me in the morning (assuming she's in the office tomorrow) as I want to know what's happening and when I'm likely to see anyone and I'm fed up just waiting around.
I finally enjoyed an episode of Dr Who last night. Shame its the last one until Xmas. But hey the Arthur and Merlin love-in starts again next week so that will keep me going. So its Countryfile and Downton for me tonight... Hope all you bunnies out there are having fun. As soon as I know any results I'll post here. Night all. J x
Sunday, September 30, 2012
Saturday, September 29, 2012
And Commiserations...
... to Denise who is having to watch cricket without the aid of alcohol today as it is some bizarre alcohol-free-religious-festival-thingy in Sri Lanka. I might post her some drugs to help her through it. J x
Feeling a Little Odd
No other way to describe it really. I slept well and am not in pain as such but just feel odd. Maybe I need to do a drain but its only a couple of days since I did one and that produced bugger all fluid so I may leave it until tomorrow.
But I have Cabaret tonight and I don't want anything to spoil that. Have just discovered though that all the arrangements I was making with Lesley about getting to the Lowry were a waste of time as she's at the matinee performance and I'm at the evening one! Good job we found that out now...
Probably just need to drug myself up and take drugs with me. Always good for a theatre trip in my experience. :-)
Next week looking really busy for coffee meetings as there are a number of work events in Manchester and, HMRC people being HMRC people, everyone is looking to take advantage of getting their expenses paid to meet up with me! I may have to draw up a waiting list. Cancellations only... We'll see. I think Jane is looking to organise a lunchtime thing (she does like her lunches) and so I could see many people at once.
And that's the news for today bunnies, I'l post a theatre review tomorrow. J x
But I have Cabaret tonight and I don't want anything to spoil that. Have just discovered though that all the arrangements I was making with Lesley about getting to the Lowry were a waste of time as she's at the matinee performance and I'm at the evening one! Good job we found that out now...
Probably just need to drug myself up and take drugs with me. Always good for a theatre trip in my experience. :-)
Next week looking really busy for coffee meetings as there are a number of work events in Manchester and, HMRC people being HMRC people, everyone is looking to take advantage of getting their expenses paid to meet up with me! I may have to draw up a waiting list. Cancellations only... We'll see. I think Jane is looking to organise a lunchtime thing (she does like her lunches) and so I could see many people at once.
And that's the news for today bunnies, I'l post a theatre review tomorrow. J x
Friday, September 28, 2012
Nearly There
Walked as far as Boots (Market Street) today from whence its just a hop skip and a jump to Harvey Nichols and the best espresso martini this side of the Pennines. Do you hear that Harvey? I'm on my way...
Met up with Lesley for a coffee (1130) and then Jane (1230) by which time I was all coffee'd out and walked home carrying my very beautiful and very lovely Diptyque candle (thank you Jane). Its beautiful but I just have to be careful its not lit when the oxygen is turned on as oxygen + naked flame = lots of clearing up afterwards!
Had a good night last night and not in too much pain today (although I think I may have overdone it slightly by being out so long). Lesson learned. Shall stay in tonight and enjoy Gardeners World and True Blood. Yay.
Discovered that weight loss (just over a stone) means I can now get into some of the clothes I bought after the last bout of cancer so thank God I hung onto them. Still need to do a wardrobe edit though to get rid of stuff that I just don't wear/don't like/have never worn to a) make a bit of money and b) save having to buy a new wardrobe. That will be next week's task. Looking forward to it. Trouble is that I rediscover things I'd completely forgotten I had (and therefore never wear) and fall in love with them all over again. Even though I never wanted to. What's a boy to do? Can't help it. :-)
That's all bunnies. J x
Met up with Lesley for a coffee (1130) and then Jane (1230) by which time I was all coffee'd out and walked home carrying my very beautiful and very lovely Diptyque candle (thank you Jane). Its beautiful but I just have to be careful its not lit when the oxygen is turned on as oxygen + naked flame = lots of clearing up afterwards!
Had a good night last night and not in too much pain today (although I think I may have overdone it slightly by being out so long). Lesson learned. Shall stay in tonight and enjoy Gardeners World and True Blood. Yay.
Discovered that weight loss (just over a stone) means I can now get into some of the clothes I bought after the last bout of cancer so thank God I hung onto them. Still need to do a wardrobe edit though to get rid of stuff that I just don't wear/don't like/have never worn to a) make a bit of money and b) save having to buy a new wardrobe. That will be next week's task. Looking forward to it. Trouble is that I rediscover things I'd completely forgotten I had (and therefore never wear) and fall in love with them all over again. Even though I never wanted to. What's a boy to do? Can't help it. :-)
That's all bunnies. J x
Thursday, September 27, 2012
So Long, Farewell...
... well you know the rest of the song. Aged Ps have departed for shores bilingual and I've been on a road trip to Eccles with Lesley to pick up a parcel for Madam. Very exciting stuff.
Didn't have a good night. Not pain so much as discomfort. Assumed this must be related to the fact that I'd waited an extra day to drain but then did that first thing this morning and there was only a minimal amount of fluid. Not sure what's going on there (nor indeed what should be going on there). Must make sure its on my list of questions for the doctors next week.
Seeing Ev later and am interested to see how I manage the walk into town because once I can do that comfortably I can go shopping, or back to work or whatever... :-) That's all for now. J x
Didn't have a good night. Not pain so much as discomfort. Assumed this must be related to the fact that I'd waited an extra day to drain but then did that first thing this morning and there was only a minimal amount of fluid. Not sure what's going on there (nor indeed what should be going on there). Must make sure its on my list of questions for the doctors next week.
Seeing Ev later and am interested to see how I manage the walk into town because once I can do that comfortably I can go shopping, or back to work or whatever... :-) That's all for now. J x
Wednesday, September 26, 2012
Results to be discussed...
...next week. Have spoken to Helen (my cancer nurse) who tells me that the results are in Wythenshawe but "haven't been typed up yet". They will be discussed at the Multi-Disciplinary Team meeting on Friday morning (which will include Dr Bailey - MRI, Mr Soon - Wythenshawe and Mr Burt - Christie and any number of other people). I then expect to be called in by one of the above for a discussion of options and more detailed prognosis. So the wait goes on...
In the meantime have been to Sainsburys again this morning and am off to Denise's gaffe to meet Lesley for coffee in a minute. The Aged Ps are talking about going home Friday as they have various appointments they need to attend to as well and they will come back up and as when needed. It will be good for us all to have a break from each other I think and I'm now capable of fending for myself pretty much.
Watched The Paradise last night - not a huge success I didn't think but it may develop over time. Had a visit from Toby yesterday and was good to see him. He's left me a copy of his wedding video to watch which is... lovely. :-) And that's all for now. J x
In the meantime have been to Sainsburys again this morning and am off to Denise's gaffe to meet Lesley for coffee in a minute. The Aged Ps are talking about going home Friday as they have various appointments they need to attend to as well and they will come back up and as when needed. It will be good for us all to have a break from each other I think and I'm now capable of fending for myself pretty much.
Watched The Paradise last night - not a huge success I didn't think but it may develop over time. Had a visit from Toby yesterday and was good to see him. He's left me a copy of his wedding video to watch which is... lovely. :-) And that's all for now. J x
Tuesday, September 25, 2012
Still No Word...
... from the hospital. But it may be that the postman just wasn't able to get his scuba gear on today as there's been no post at all.
Welcome to Lesley on the blog - my current principal carer (in the absence of the carer-in-chief (oversea branch)).
Had a really good night last night (over 8 hours sleep) as used Drug Number 4 (Ibuprofen) as part of the heady cocktail I'm on. Also had 2 beers but I'm sure this didn't contribute at all to the zzzs.
Made the trek to the local Sainsbury's and back with my father this morning - in the weather. A round trip of 20 minutes. It was slow going but I don't appear to have suffered any adverse effects. Off round the corner to meet Lesley for coffee tomorrow and then hopefully into Deansgate Nero on Thursday to meet Ev and Cath for coffee. Its almost like being on holiday (apart from the cancer bit).
And not much else to report really. Not enjoying Dr Who particularly at the moment. I think they're missing Russell T but this week might be more exciting as the weeping angels are back.
And I'm sorry, but that's really all there is. J x
Welcome to Lesley on the blog - my current principal carer (in the absence of the carer-in-chief (oversea branch)).
Had a really good night last night (over 8 hours sleep) as used Drug Number 4 (Ibuprofen) as part of the heady cocktail I'm on. Also had 2 beers but I'm sure this didn't contribute at all to the zzzs.
Made the trek to the local Sainsbury's and back with my father this morning - in the weather. A round trip of 20 minutes. It was slow going but I don't appear to have suffered any adverse effects. Off round the corner to meet Lesley for coffee tomorrow and then hopefully into Deansgate Nero on Thursday to meet Ev and Cath for coffee. Its almost like being on holiday (apart from the cancer bit).
And not much else to report really. Not enjoying Dr Who particularly at the moment. I think they're missing Russell T but this week might be more exciting as the weeping angels are back.
And I'm sorry, but that's really all there is. J x
Monday, September 24, 2012
No Word...
... from the hospital yet but it is only Monday.
A particularly wet Monday which has meant that the guttering for the flat above me has overflowed (the down pipe isn't big enough for Manchester-level rain volumes) and so have been mopping up somewhat where it leaks in through the doors onto the terrace. Only happens with truly biblical downpours though.
Nevertheless Ma & Pa ventured out to Sainsburys in search of provisions and the Times crossword. Mother was even double-anoracked. Something I have never witnessed before. I have a photograph but still lack the ability to transfer photos onto here.
Had a bad night, Saturday and a not good morning on Sunday. But I drained my pleura Sunday afternoon (50ml) and feel much better for it. Slept through last night and painkiller consumption is noticeably down today.
Bryn & Michelle popped in on Sunday and good to see them as ever. Sounds like New York planning is going right to the wire and that as a result accommodation discounts are likely to be high. No decisions yet from Denise as to whether she goes or not. No visitors today but a team member coming tomorrow evening.
Denise still enjoying Sri Lanka but they have a bit of on-off monsoon there too I believe.
Getting a little bored now but was forbidden from leaving the flat today for the walk to Sainsburys. Hopefully will be allowed out tomorrow and eventually for the walk into town to meet people for coffee. Have the Lowry on Saturday (Cabaret with Will Young as the emcee) and MEN on Sunday (Jesus Christ Superstar - good review in The Times today) so need to start building up some strength soon... That's all. J x
A particularly wet Monday which has meant that the guttering for the flat above me has overflowed (the down pipe isn't big enough for Manchester-level rain volumes) and so have been mopping up somewhat where it leaks in through the doors onto the terrace. Only happens with truly biblical downpours though.
Nevertheless Ma & Pa ventured out to Sainsburys in search of provisions and the Times crossword. Mother was even double-anoracked. Something I have never witnessed before. I have a photograph but still lack the ability to transfer photos onto here.
Had a bad night, Saturday and a not good morning on Sunday. But I drained my pleura Sunday afternoon (50ml) and feel much better for it. Slept through last night and painkiller consumption is noticeably down today.
Bryn & Michelle popped in on Sunday and good to see them as ever. Sounds like New York planning is going right to the wire and that as a result accommodation discounts are likely to be high. No decisions yet from Denise as to whether she goes or not. No visitors today but a team member coming tomorrow evening.
Denise still enjoying Sri Lanka but they have a bit of on-off monsoon there too I believe.
Getting a little bored now but was forbidden from leaving the flat today for the walk to Sainsburys. Hopefully will be allowed out tomorrow and eventually for the walk into town to meet people for coffee. Have the Lowry on Saturday (Cabaret with Will Young as the emcee) and MEN on Sunday (Jesus Christ Superstar - good review in The Times today) so need to start building up some strength soon... That's all. J x
Saturday, September 22, 2012
A Trip Out!
Had an OK night but not pain free. Had to get up at 0130 to take some drugs but otherwise a trouble free night.
Ma & Pa went of in search of newspapers this morning but managed to come back with my prescription for drainage bottles. Well done them for showing initiative (and getting away with not paying for the prescription despite not having my pre-payment certificate on hand).
This afternoon though we all took a trip out to.... Sainsburys! Where we purchased booze and mixers for booze. Clearly an essential trip therefore. Managed the drive there and the walk around the supermarket without too many ill effects although I did hurt myself getting in the car - you occasionally catch yourself in an unaccustomed position that uses one of your muscle groups damaged by the surgery and then have spasms of pain shooting across your side. Luckily it doesn't last too long whilst affording the opportunity for some drama queeny squeals. We are now all safely back at home watching One Man and His Dog on television. Yes, really. And no, I don't know why.
Gill calling round later so will be good to see her and find out how she's getting on with stuff.
Been a beautiful day and Mum has taken advantage of the weather by potting on some of the plants on my terrace for which I'm extremely grateful. And that's about all for today. Just waiting now for contact from the hospital to let me know when my results are back. J x
Ma & Pa went of in search of newspapers this morning but managed to come back with my prescription for drainage bottles. Well done them for showing initiative (and getting away with not paying for the prescription despite not having my pre-payment certificate on hand).
This afternoon though we all took a trip out to.... Sainsburys! Where we purchased booze and mixers for booze. Clearly an essential trip therefore. Managed the drive there and the walk around the supermarket without too many ill effects although I did hurt myself getting in the car - you occasionally catch yourself in an unaccustomed position that uses one of your muscle groups damaged by the surgery and then have spasms of pain shooting across your side. Luckily it doesn't last too long whilst affording the opportunity for some drama queeny squeals. We are now all safely back at home watching One Man and His Dog on television. Yes, really. And no, I don't know why.
Gill calling round later so will be good to see her and find out how she's getting on with stuff.
Been a beautiful day and Mum has taken advantage of the weather by potting on some of the plants on my terrace for which I'm extremely grateful. And that's about all for today. Just waiting now for contact from the hospital to let me know when my results are back. J x
Friday, September 21, 2012
Still All Good
So nothing went downhill yesterday afternoon/evening and the night was good too. And today has been fine so far. Yippee. I do get the occasional stabbing pain which comes out of nowhere and manifests itself either in my abdomen or the right side of my back i.e. not at the wound site at all which is under my right arm. There isn't anything I'm doing/eating/not doing that triggers these pains but they're easily controlled by the rather vast pharmacopeia available to me (and yes, I know that's a book but I like the word).
Still nothing from the hospital on any results but they did say that it can take up to 2 weeks for results to come back plus they normally have a multi-disciplinary team meeting on Friday mornings so they may have discussed any results this morning and a letter may already be in the post offering me an appointment. We'll see. But since its just a question of "which cancer is it?" rather than "is it or isn't it cancer?" the outcome is not quite as crucial and so I'm content to wait until they get in touch.
Aged Ps have gone out for lunch and shopping. And Lesley is popping round for a glass of wine tonight. Had a visit from a team member yesterday and it was really good to see him. He's now got the blog address and so you may find him commenting on my comments in the future. He's a great guy and I predict a bright future for him (and I'm not just saying that because he'l now be reading this!).
Jim has been doing his magistrating stuff today but didn't get to see Dale Cregan who appeared before a District Judge. But he was in the same building. Look forward to hearing all about that later.
News from Sri Lanka: Madam being driven everywhere in tuk tuks and spending time on the beach as well as at the cricket. There are also cocktails...
May take Aged Ps out for a drive tomorrow if good progress continues.
That's all for now. J x
Still nothing from the hospital on any results but they did say that it can take up to 2 weeks for results to come back plus they normally have a multi-disciplinary team meeting on Friday mornings so they may have discussed any results this morning and a letter may already be in the post offering me an appointment. We'll see. But since its just a question of "which cancer is it?" rather than "is it or isn't it cancer?" the outcome is not quite as crucial and so I'm content to wait until they get in touch.
Aged Ps have gone out for lunch and shopping. And Lesley is popping round for a glass of wine tonight. Had a visit from a team member yesterday and it was really good to see him. He's now got the blog address and so you may find him commenting on my comments in the future. He's a great guy and I predict a bright future for him (and I'm not just saying that because he'l now be reading this!).
Jim has been doing his magistrating stuff today but didn't get to see Dale Cregan who appeared before a District Judge. But he was in the same building. Look forward to hearing all about that later.
News from Sri Lanka: Madam being driven everywhere in tuk tuks and spending time on the beach as well as at the cricket. There are also cocktails...
May take Aged Ps out for a drive tomorrow if good progress continues.
That's all for now. J x
Thursday, September 20, 2012
Who Knew?
Appears that I qualify for Disability Living Allowance (non means tested) of £130 per week. Difficult one this because I feel a bit of a fraud if I do take it now as I'm on full pay from work but on the other hand who knows what is likely to happen further down the line and what sort of financial position I might be in? I think I need to at least get a definitive diagnosis on what type of cancer this is before we go down that route. I'll also, incidentally, qualify for a blue badge for parking the car. Fab!
Everything was going so well yesterday when I blogged but then went downhill late afternoon/early evening when I had quite a lot of pain again. I even had to resort to the take home morphine for the first time. Luckily that hasn't continued though and I had another good night last night and another good morning so far today. I've even managed to drain my pleura this morning (the amount of liquid was minimal but I'm not sure whether this is a good or a bad thing) without apparently giving myself a fatal infection (at least my temperature hasn't gone up yet). In any case I'm not feeling breathless so it suggests there isn't a lot of fluid there pressing on my lung. Which I think must be good. My Oxygen SATS are also quite good at the moment during the day when I'm not using oxygen at all - just at night.
Had a call from the GP this morning and he's happy to come and see me if necessary. We've left it that we'll see how things go this weekend and I'll call him if I want to see him next week. In the meantime I'll have a visit from Rosie tomorrow anyway.
Spoke to Denise this morning who is enjoying the wonders of Sri Lanka which she says is a beautiful place. The people are really nice too. Everything is fine and hunky dory there (apart from having to watch cricket of course) and the temperature is a balmy 29C.
Aged Ps are fine and have just popped out for lunch as I have a visitor lunchtime today. Also owe a few people phone calls this afternoon.
Can't remember if I explained that my mother has been given a three month reprieve from any further treatment so looks like they might be here until Denise gets back. I'm not sure that will be completely necessary because I would hope that I just start to feel better and better as the days go on but lets wait and see.
And that's all for now. Just about to take a couple of precautionary tramadol to se me through the afternoon. Happy days! J x
Everything was going so well yesterday when I blogged but then went downhill late afternoon/early evening when I had quite a lot of pain again. I even had to resort to the take home morphine for the first time. Luckily that hasn't continued though and I had another good night last night and another good morning so far today. I've even managed to drain my pleura this morning (the amount of liquid was minimal but I'm not sure whether this is a good or a bad thing) without apparently giving myself a fatal infection (at least my temperature hasn't gone up yet). In any case I'm not feeling breathless so it suggests there isn't a lot of fluid there pressing on my lung. Which I think must be good. My Oxygen SATS are also quite good at the moment during the day when I'm not using oxygen at all - just at night.
Had a call from the GP this morning and he's happy to come and see me if necessary. We've left it that we'll see how things go this weekend and I'll call him if I want to see him next week. In the meantime I'll have a visit from Rosie tomorrow anyway.
Spoke to Denise this morning who is enjoying the wonders of Sri Lanka which she says is a beautiful place. The people are really nice too. Everything is fine and hunky dory there (apart from having to watch cricket of course) and the temperature is a balmy 29C.
Aged Ps are fine and have just popped out for lunch as I have a visitor lunchtime today. Also owe a few people phone calls this afternoon.
Can't remember if I explained that my mother has been given a three month reprieve from any further treatment so looks like they might be here until Denise gets back. I'm not sure that will be completely necessary because I would hope that I just start to feel better and better as the days go on but lets wait and see.
And that's all for now. Just about to take a couple of precautionary tramadol to se me through the afternoon. Happy days! J x
Wednesday, September 19, 2012
Early Days
So, my first night and day at home were terrible. So much pain, discomfort, unwellnes and sickness. But that all changed last night when I had 7 hours sleep and today when (so far, touch wood) I feel much better. The fact that this transformation occurred at the the same moment as my parents arrived in Manchester is, I'm sure, a coincidence. Also the consumption of a bowl of my own home made tomato soup is, I think, a similarly unrelated factor.
The District Nurse, Rosie (yes, really), called to see me and touch base yesterday. She'll be back on Friday to take a stitch out of my side where the big drain on my lung was secured.
I still have a pleural catheter in my side (into the pleura, obviously) but this is just a tube with no bag attached. Its my job, from time to time to hook up a vacuum bottle to they tube and drain any excess fluid from the pleura. They've shown me how to do this once in the hospital but its a fairly complicated affair so I hope I remember everything I need to do tomorrow when I'm doing it on my own. And you have to be so careful about making sure everything is absolutely sterile. Fingers crossed I don't do something disastrous and drain my entire body of blood or anything.
Aged Ps have now gone out to lunch so have a bit of me-time now (and hence updating the blog). Loads of you have been in touch and it makes me really happy that there are so many of you out there who care about me so a big thank you. Its a bit difficult with my Team in work though because I do still want to be helping them as much as I can but now that I will no longer be their manager I also need to keep my nose out and let whoever is taking over get on with the job without me interfering all the time. Trust me, its very difficult to do.
And that's about all the news so far. May or may not get a visit from the GP but they seemed very keen to keep in touch and monitor my progress which is a comfort too.
Hope you're all keeping well and I'll update again soon. J x
The District Nurse, Rosie (yes, really), called to see me and touch base yesterday. She'll be back on Friday to take a stitch out of my side where the big drain on my lung was secured.
I still have a pleural catheter in my side (into the pleura, obviously) but this is just a tube with no bag attached. Its my job, from time to time to hook up a vacuum bottle to they tube and drain any excess fluid from the pleura. They've shown me how to do this once in the hospital but its a fairly complicated affair so I hope I remember everything I need to do tomorrow when I'm doing it on my own. And you have to be so careful about making sure everything is absolutely sterile. Fingers crossed I don't do something disastrous and drain my entire body of blood or anything.
Aged Ps have now gone out to lunch so have a bit of me-time now (and hence updating the blog). Loads of you have been in touch and it makes me really happy that there are so many of you out there who care about me so a big thank you. Its a bit difficult with my Team in work though because I do still want to be helping them as much as I can but now that I will no longer be their manager I also need to keep my nose out and let whoever is taking over get on with the job without me interfering all the time. Trust me, its very difficult to do.
And that's about all the news so far. May or may not get a visit from the GP but they seemed very keen to keep in touch and monitor my progress which is a comfort too.
Hope you're all keeping well and I'll update again soon. J x
Monday, September 17, 2012
I've Done My Time
Now heading home. Hurrah. Will blog more fully from there since its easier to do from the lap top. That's all. J x
Rough Nights A Go Go
So again a rough night but not as rough as Saturday night so managed a few hours sleep at least. Not seen any doctors so far this morning but I have been shown how to - and indeed have now done - drain my pleural catheter. It's not pleasant and it's a bit complicated but it's not beyond my skill set. Not much fluid came out which presumably means the fluid isn't collecting particularly quickly. I don't know whether this is a good, bad or indifferent thing though. But it should mean I won't have to do it every day which I'm glad about.
Felt a bit sick this morning but then not had a bowel movement for days. Despite a ton of laxatives. They better kick in soon or I may explode! More information perhaps than people want but tough. We deal with warts and all on this blog. Not that I have any. Warts that is.... J x
Oh and finally, before I forget, it looks like they'll be sending me home with some morphine. Party round my place then.... J x
Felt a bit sick this morning but then not had a bowel movement for days. Despite a ton of laxatives. They better kick in soon or I may explode! More information perhaps than people want but tough. We deal with warts and all on this blog. Not that I have any. Warts that is.... J x
Oh and finally, before I forget, it looks like they'll be sending me home with some morphine. Party round my place then.... J x
Sunday, September 16, 2012
Receiving Complaints
Yes actual complaints that the blog isn't being updated often enough so here goes...
Another rough night - everything is worse at night - but a not too bad day today. Still in maximum paracetomol but only had 2 doses of morphine so far. It's Sunday so it's been quite quiet although there was a doctors walk-around this morning. A chest x-ray was ordered and done. Presumably they'll look at this in the morning when deciding whether I can go home or not. Fingers crossed I can although I'll need to be shown how to operate this pleural catheter before they discharge me.
Jane & Bill visited this afternoon and brought me lots of lovely stuff and Jim due this evening. He's a bit tardy but everyone underestimates the size of this hospital.... And that's all folks. J x
Another rough night - everything is worse at night - but a not too bad day today. Still in maximum paracetomol but only had 2 doses of morphine so far. It's Sunday so it's been quite quiet although there was a doctors walk-around this morning. A chest x-ray was ordered and done. Presumably they'll look at this in the morning when deciding whether I can go home or not. Fingers crossed I can although I'll need to be shown how to operate this pleural catheter before they discharge me.
Jane & Bill visited this afternoon and brought me lots of lovely stuff and Jim due this evening. He's a bit tardy but everyone underestimates the size of this hospital.... And that's all folks. J x
Saturday, September 15, 2012
Not Dead Yet
So. Stuff is happening. Didn't have a comfortable night. The breathlessness and pain seemed to be coming back and I panicked a bit. Anyway, on call doctor came to see me and after briefly running through his career history managed to persuade me that a nebuliser was the correct way to go it seemed to work in any case.
Have seen doctors this morning and had the big drain removed. It hurt a little bit and the site is still tender. This was accompanied by the return of my lower back pain. Oh joy. Because I'd missed that. Just about to have some paracetomol to help with that. I'll update progress later. J x
Have seen doctors this morning and had the big drain removed. It hurt a little bit and the site is still tender. This was accompanied by the return of my lower back pain. Oh joy. Because I'd missed that. Just about to have some paracetomol to help with that. I'll update progress later. J x
Friday, September 14, 2012
An Update on a Further Update
I pressed the wrong button on the last update (shock horror) before I'd finished so this posting is a continuation of the one below - read that one first!
Pain, you'll be glad to hear, has gone from its previous sites. And not just because I'm on morphine either. When I woke up in agony just now, the agony was in a whole different place. Which is a good thing trust me. STOP PRESS. Alison, whom I was just dissing, has stolen/borrowed (the details matter little to me at this point in time - see above re "agony") a new cylinder from another ward and we're good to go to ride that morphine train to dreamland... Those of you with whom I've discussed my latest hospital admission will know that dying doesn't frighten me, being in pain and unable to control it does.
It also means that the other pain (in my abdomen) is related to this admission and not something entirely new like appendicitis or similar. Regular readers will recall that I like to "do the double" from time to time (anyone else remember that hilarious time I had chicken pix and pneumonia?). This is a huge relief for me.
Essentially though we're back where we started and another biopsy has been sent off for testing. Up to two weeks (and here's me thinking the summer holidays were over). Perhaps they need to send it for testing abroad in an EU funded hospital in, say, Ibiza and the tester is busy helping their mate clean up the bar tables after a busy summer season? Anyway, it is what it is and I'll let you know the results when I know them.
And I think that's about all I have the energy to post at the moment. Good to see La Wensley is back in the fold (see earlier blog comments). Sorry I hadn't got round to telling you personally before this all kicked off. I'll blog more tomorrow. Perhaps after I've had another SLEEP! But the little green light in my re-found love is flashing invitingly at me saying "touch me, strike me, a little harder" (and all the other things buttons commonly say) and I think I'm about to give into temptation. See you on the other side dearest readers. Love/Live Jonathan x
Pain, you'll be glad to hear, has gone from its previous sites. And not just because I'm on morphine either. When I woke up in agony just now, the agony was in a whole different place. Which is a good thing trust me. STOP PRESS. Alison, whom I was just dissing, has stolen/borrowed (the details matter little to me at this point in time - see above re "agony") a new cylinder from another ward and we're good to go to ride that morphine train to dreamland... Those of you with whom I've discussed my latest hospital admission will know that dying doesn't frighten me, being in pain and unable to control it does.
It also means that the other pain (in my abdomen) is related to this admission and not something entirely new like appendicitis or similar. Regular readers will recall that I like to "do the double" from time to time (anyone else remember that hilarious time I had chicken pix and pneumonia?). This is a huge relief for me.
Essentially though we're back where we started and another biopsy has been sent off for testing. Up to two weeks (and here's me thinking the summer holidays were over). Perhaps they need to send it for testing abroad in an EU funded hospital in, say, Ibiza and the tester is busy helping their mate clean up the bar tables after a busy summer season? Anyway, it is what it is and I'll let you know the results when I know them.
And I think that's about all I have the energy to post at the moment. Good to see La Wensley is back in the fold (see earlier blog comments). Sorry I hadn't got round to telling you personally before this all kicked off. I'll blog more tomorrow. Perhaps after I've had another SLEEP! But the little green light in my re-found love is flashing invitingly at me saying "touch me, strike me, a little harder" (and all the other things buttons commonly say) and I think I'm about to give into temptation. See you on the other side dearest readers. Love/Live Jonathan x
In Further Updates...
Morning bloggers. You know how they say that love the second time round never works? Well I'm living proof that it isn't so. Me and the push-button-morphine-on-demand machine are here to re-affirm our views, stand up in front of the world and say that cross-bio-mechanical love is good, it is a valid lifestyle choice and we don't care who knows it. I've had a sleep, dear readers, a SLEEP. Yes, it was only 4 hours (we don't want to rush into new experiences too quickly), yes I was in agony when I woke up (I've yet to train my body to push buttons in my sleep - how do some of my colleagues manage it?) and yes I'm awake now (to the fact that the nurse on duty doesn't know to get hold of a new morphine cylinder to replenish my new love if to nothing else). It was sleep nonetheless and it was blissful (and dreamless as far as I can recall). But she better hurry up and get a replacement cylinder soon or we're all in big trouble - you should hear the noise these things make when they're empty...
In other news, my drain has leaked a bit. My sheets look like they're from a war zone. But not to worry, we've put extra dressings over the drain site and this means everything is OK. Apparently. I'm now not as sure of Alison, my care-giver, as I was last night. :-( Which is a shame because she's lovely and wants to help...
In other news, my drain has leaked a bit. My sheets look like they're from a war zone. But not to worry, we've put extra dressings over the drain site and this means everything is OK. Apparently. I'm now not as sure of Alison, my care-giver, as I was last night. :-( Which is a shame because she's lovely and wants to help...
Wednesday, September 12, 2012
It Is Working. Yay!
So first impressions of Wythenshawe hospital aren't good. The admittance procedures are a complete bureaucratic farce - and we think we have problems in HMRC!
Don't like the nurse who's in charge of me. OK if I take my own painkillers? Fine, you can take them in the morning too. No checking what I'm on, whether I'm about to attempt suicide etc. also don't like the anaesthetist. He doesn't give a stuff about me and my pain and seemed put out that me and DD were asking questions.
However, we do like my consultant Mr Soon. Young-ish, possibly Korean, only one who shook my hand... and we do like Jonathan, our clinical support worker who has just shaved my chest. He doubts himself and worries about giving out the wrong drugs hence he won't train to be a nurse. Dear reader, I'm already working on it.
Looks like I'm first or second on the list in the morning so hopefully I'll be in a position to blog then and let you know how it all went. Sleep well. I won't. :-) J x
Don't like the nurse who's in charge of me. OK if I take my own painkillers? Fine, you can take them in the morning too. No checking what I'm on, whether I'm about to attempt suicide etc. also don't like the anaesthetist. He doesn't give a stuff about me and my pain and seemed put out that me and DD were asking questions.
However, we do like my consultant Mr Soon. Young-ish, possibly Korean, only one who shook my hand... and we do like Jonathan, our clinical support worker who has just shaved my chest. He doubts himself and worries about giving out the wrong drugs hence he won't train to be a nurse. Dear reader, I'm already working on it.
Looks like I'm first or second on the list in the morning so hopefully I'll be in a position to blog then and let you know how it all went. Sleep well. I won't. :-) J x
A Bed!
So, Wythenshawe hospital has just telephoned and they've found me a bed on Ward F6. I'm to check in about 1600. Not sure whether I'll be able to blog from my bed but I'll text people as and when I can. Hopefully the op will be fine tomorrow and I'll be out and able to breathe early next week and then we shall see what we shall see.
Oxygen nurses came round yesterday and told me off for not using my oxygen enough. So I've had in to on all day today which has been a complete pain. Will be glad to be rid of it for a while. And hopefully I'll be rid of some of this pain after the op too so I'll be able to sleep.
And that's all I know for now. Denise will take me in and I will hopefully see some of you as visitors over the next few days. Fingers crossed... J x
Oxygen nurses came round yesterday and told me off for not using my oxygen enough. So I've had in to on all day today which has been a complete pain. Will be glad to be rid of it for a while. And hopefully I'll be rid of some of this pain after the op too so I'll be able to sleep.
And that's all I know for now. Denise will take me in and I will hopefully see some of you as visitors over the next few days. Fingers crossed... J x
Tuesday, September 11, 2012
Pre-Op Assessment
So it was off to Wythenshawe hospital yesterday for the pre-op. This consisted of an ECG, blood tests and a chest x-ray all of which went smoothly.
However, I have also been getting terrible pains in my abdomen (never rains eh?) and wanted to get these checked out before the operation in case they hampered it in any way. It seemed sensible to me to do this at Wythenshawe because this is where the operation is to take place. So far, so good...
However, my assessment was "nurse-led" and, it appears, Wythenshawe has no doctors available unless you have an appointment. My nurse (Caroline) did her best to try and find one but they were all either in theatre (despite being shown as "on call") or at other hospitals. In the end I had to go to A&E in order to find a doctor. Again, it seemed sensible to go to Wythenshawe A&E because if this was a separate thing that required admission I would at least be in the right hospital. And how busy could A&E be in Wythenshawe on a Monday afternoon? Of course the answer - as my good friend and constant companion Denise (an ex-Wythenshawe resident) pointed out - is very busy indeed. We even had to queue to register. Eventually got seen by an A&E doctor who couldn't help me and had to call on a specialist from - you guessed it - the Department I had been in for my nurse-led assessment. Total fucking madness.
Anyway, Mr Prasaad (who I saw at MRI a week earlier) says he thinks its all connected to the cancer and so the abdominal thing shouldn't prevent the surgery going ahead. Still means I'm not sleeping but its only for a few nights.
Can I just say at this point thank you to Denise. She accompanied me the whole time we were there (about 5 hours in all) and was unfailingly cheerful and helpful. I'm sure this won't be the last time I thank her on this blog.
She has a day off today but I will be visited later by the oxygen nurse, Sara and Gill so won't be bored. Will also try and catch up on some sleep and pack my stuff for hospital tomorrow evening.
That's all for now. Will update later if anything exciting happens. J x
However, I have also been getting terrible pains in my abdomen (never rains eh?) and wanted to get these checked out before the operation in case they hampered it in any way. It seemed sensible to me to do this at Wythenshawe because this is where the operation is to take place. So far, so good...
However, my assessment was "nurse-led" and, it appears, Wythenshawe has no doctors available unless you have an appointment. My nurse (Caroline) did her best to try and find one but they were all either in theatre (despite being shown as "on call") or at other hospitals. In the end I had to go to A&E in order to find a doctor. Again, it seemed sensible to go to Wythenshawe A&E because if this was a separate thing that required admission I would at least be in the right hospital. And how busy could A&E be in Wythenshawe on a Monday afternoon? Of course the answer - as my good friend and constant companion Denise (an ex-Wythenshawe resident) pointed out - is very busy indeed. We even had to queue to register. Eventually got seen by an A&E doctor who couldn't help me and had to call on a specialist from - you guessed it - the Department I had been in for my nurse-led assessment. Total fucking madness.
Anyway, Mr Prasaad (who I saw at MRI a week earlier) says he thinks its all connected to the cancer and so the abdominal thing shouldn't prevent the surgery going ahead. Still means I'm not sleeping but its only for a few nights.
Can I just say at this point thank you to Denise. She accompanied me the whole time we were there (about 5 hours in all) and was unfailingly cheerful and helpful. I'm sure this won't be the last time I thank her on this blog.
She has a day off today but I will be visited later by the oxygen nurse, Sara and Gill so won't be bored. Will also try and catch up on some sleep and pack my stuff for hospital tomorrow evening.
That's all for now. Will update later if anything exciting happens. J x
Sunday, September 09, 2012
The Truth. The Whole Truth. And a Bit of Personal Comment.
Firstly, apologies are in order as I haven't blogged for some time despite the momentous events that have been taking place. That is because I wanted to speak to as many of you as I possibly could before posting what has happened here. Most of you should already know by now that I have been diagnosed with lung cancer. For the record, this is how it happened...
I took two (glorious) weeks of annual leave to watch the Olympics on the telly. And they were glorious weeks. I enjoyed myself thoroughly. Upon my return to work the following Monday I noticed that I was slightly out of breath when I climbed the stairs in the office. I didn't think too much of it though as I had spent the previous 2 weeks on my arse on the sofa and was probably a little out of condition. However, as the week went on things didn't improve and, if anything, got slightly worse. I therefore decided to make an appointment to see my GP the following week to discuss the matter.
However, on the Saturday I noticed that my temperature was rising slightly (but not worringly so). Having had pneumonia before and waited so long to get it checked out that I had to be taken to hospital by ambulance I decided to preempt matters and go directly to A&E at Manchester Royal Infirmary. My best friend in the world, Denise, accordingly obliged by driving me there. At A&E they took a chest X-Ray which they described as "sufficiently impressive" and decided to admit me.
I was initially admitted to Ward 15 (which is the medical assessment ward) and spent three days there whilst they took samples of the fluid that had accumulated in my pleura (the pleura is a sort of a bag that enclose the lung to protect it). The fluid in the pleura was compressing my lung which was what was causing my breathing difficulties. By this time I was on oxygen as the oxygen saturation levels (SATS) in my blood were on the low side.
The fluid they sampled is normally clear but in my case it was filled with blood which was starting to ring alarm bells. In addition I noted that I did not have the sort of cough (full of phlegm - apologies) that had accompanied the previous bout of pneumonia. Whilst they awaited the results of the tests I was transferred to ward AM1 (Acute Medical) which is a respiratory diseases ward.
Once on AM1 they sent me for a CT Scan which showed definitively that I had lung cancer and that it had already spread beyond the lung. This news was devastating as you can imagine. When I was given the news by the consultant I pretty much broke down not only because of the news but also because I was going to have to tell my parents. How does one tell one's parents who have already lost one child (you will recall that we lost Sally to MS eleven years ago) that they will also lose their other child. I just cannot imagine what they are going through although I can see that they are doing their best to be strong for me. But its not easy for them.
I asked the consultant what the survival rates were for lung cancer and his answer made me laugh when he said "well, some people live for four years". Of course that was not the question I had asked. I was asking for the percentage of people who actually got better but it appears that no-one does. Discussions with a different consultant the following week elicited the response that "we're looking at months rather than years in your case". But I don't know how many months at this stage because we don't know yet which of the many types of lung cancer I have.
I have had a biopsy and a bronchoscopy both of which have been inconclusive. The biopsy was difficult because of the blood in the fluid (or pleural effusion) which meant they couldn't be sure they were taking samples from the right place. The results from the bronchoscopy came back as "serious but not diagnostic" i.e. there were abnormal cells but not of sufficient quality for them to make a firm diagnosis of the type of cancer I have. Which leads me to what is happening next week.
I have been discharged from MRI and am now at home along with a lot of oxygen bottles and I go into Wythenshawe hospital where they will perform surgery under general anaesthetic to establish once and for all the type of cancer. At the same time they will drain the pleural effusion and fill the gap with talcum powder (I know!) which will cause the pleura to stick to the lung which will mean that no further accumulation of fluid can take place. And once all that has been done I can start making plans about what to do with the time I have left.
I have been told that I can't fly and I wouldn't get travel insurance now anyway so a round the world trip is not on the cards. Visits to parts of Europe should be doable though but I'll just need to check out medical arrangements. I may be fit enough to return to work although given that fact that I have a terminal illness I doubt it will be to my old job. But plans will be able to be made after next week which is encouraging.
How do I feel? Not distraught. I smoked for 25 years and so have no-one to blame for this but myself. This cancer isn't related to my previous cancer but is a whole new thing. I'm not worried about dying as my belief system is such that I don't believe any form of consciousness survives death and so the only people to be affected by my death will be the people I leave behind. I have led a full, interesting and fulfilling life and so I have no regrets about opportunities missed or squandered. I have been successful in my career and have "made a difference" in my view during my time on this planet. Indeed I only need to think about all the wonderful friends I have (you would not believe how many cards I've received) to realise that I have lived a good life. I have upset people along the way (sometimes in a good way) and if you're still upset with me over something then I'm sorry about that but, really, grow up and get over it. My life really is too short to be worrying about that sort of thing...
The only thing I worry about is the period that leads up to death. Pain and a loss of control scare me. I'm assured by nurses that hospices and other care workers prioritise pain relief over prolonging life so that if it is a question of giving you pain relief that is going to kill you they will give it anyway which gives me comfort. I do want my friends and family to realise though that any decisions made are mine to make. I will always try and take other people's feeling and wishes into account but at the end of the day (which it will really be this time) I will need to make decisions that are right for me. If these decisions upset you I apologise but know that I will be doing the right thing for me.
That's all for now. I will update following next week's hospital admissions. Questions?
I took two (glorious) weeks of annual leave to watch the Olympics on the telly. And they were glorious weeks. I enjoyed myself thoroughly. Upon my return to work the following Monday I noticed that I was slightly out of breath when I climbed the stairs in the office. I didn't think too much of it though as I had spent the previous 2 weeks on my arse on the sofa and was probably a little out of condition. However, as the week went on things didn't improve and, if anything, got slightly worse. I therefore decided to make an appointment to see my GP the following week to discuss the matter.
However, on the Saturday I noticed that my temperature was rising slightly (but not worringly so). Having had pneumonia before and waited so long to get it checked out that I had to be taken to hospital by ambulance I decided to preempt matters and go directly to A&E at Manchester Royal Infirmary. My best friend in the world, Denise, accordingly obliged by driving me there. At A&E they took a chest X-Ray which they described as "sufficiently impressive" and decided to admit me.
I was initially admitted to Ward 15 (which is the medical assessment ward) and spent three days there whilst they took samples of the fluid that had accumulated in my pleura (the pleura is a sort of a bag that enclose the lung to protect it). The fluid in the pleura was compressing my lung which was what was causing my breathing difficulties. By this time I was on oxygen as the oxygen saturation levels (SATS) in my blood were on the low side.
The fluid they sampled is normally clear but in my case it was filled with blood which was starting to ring alarm bells. In addition I noted that I did not have the sort of cough (full of phlegm - apologies) that had accompanied the previous bout of pneumonia. Whilst they awaited the results of the tests I was transferred to ward AM1 (Acute Medical) which is a respiratory diseases ward.
Once on AM1 they sent me for a CT Scan which showed definitively that I had lung cancer and that it had already spread beyond the lung. This news was devastating as you can imagine. When I was given the news by the consultant I pretty much broke down not only because of the news but also because I was going to have to tell my parents. How does one tell one's parents who have already lost one child (you will recall that we lost Sally to MS eleven years ago) that they will also lose their other child. I just cannot imagine what they are going through although I can see that they are doing their best to be strong for me. But its not easy for them.
I asked the consultant what the survival rates were for lung cancer and his answer made me laugh when he said "well, some people live for four years". Of course that was not the question I had asked. I was asking for the percentage of people who actually got better but it appears that no-one does. Discussions with a different consultant the following week elicited the response that "we're looking at months rather than years in your case". But I don't know how many months at this stage because we don't know yet which of the many types of lung cancer I have.
I have had a biopsy and a bronchoscopy both of which have been inconclusive. The biopsy was difficult because of the blood in the fluid (or pleural effusion) which meant they couldn't be sure they were taking samples from the right place. The results from the bronchoscopy came back as "serious but not diagnostic" i.e. there were abnormal cells but not of sufficient quality for them to make a firm diagnosis of the type of cancer I have. Which leads me to what is happening next week.
I have been discharged from MRI and am now at home along with a lot of oxygen bottles and I go into Wythenshawe hospital where they will perform surgery under general anaesthetic to establish once and for all the type of cancer. At the same time they will drain the pleural effusion and fill the gap with talcum powder (I know!) which will cause the pleura to stick to the lung which will mean that no further accumulation of fluid can take place. And once all that has been done I can start making plans about what to do with the time I have left.
I have been told that I can't fly and I wouldn't get travel insurance now anyway so a round the world trip is not on the cards. Visits to parts of Europe should be doable though but I'll just need to check out medical arrangements. I may be fit enough to return to work although given that fact that I have a terminal illness I doubt it will be to my old job. But plans will be able to be made after next week which is encouraging.
How do I feel? Not distraught. I smoked for 25 years and so have no-one to blame for this but myself. This cancer isn't related to my previous cancer but is a whole new thing. I'm not worried about dying as my belief system is such that I don't believe any form of consciousness survives death and so the only people to be affected by my death will be the people I leave behind. I have led a full, interesting and fulfilling life and so I have no regrets about opportunities missed or squandered. I have been successful in my career and have "made a difference" in my view during my time on this planet. Indeed I only need to think about all the wonderful friends I have (you would not believe how many cards I've received) to realise that I have lived a good life. I have upset people along the way (sometimes in a good way) and if you're still upset with me over something then I'm sorry about that but, really, grow up and get over it. My life really is too short to be worrying about that sort of thing...
The only thing I worry about is the period that leads up to death. Pain and a loss of control scare me. I'm assured by nurses that hospices and other care workers prioritise pain relief over prolonging life so that if it is a question of giving you pain relief that is going to kill you they will give it anyway which gives me comfort. I do want my friends and family to realise though that any decisions made are mine to make. I will always try and take other people's feeling and wishes into account but at the end of the day (which it will really be this time) I will need to make decisions that are right for me. If these decisions upset you I apologise but know that I will be doing the right thing for me.
That's all for now. I will update following next week's hospital admissions. Questions?
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