Bugger me, a weekend where going to A&E never appeared likely. Hard to believe, but true.
Saturday was a nice day so we went out for a little tiki tour, but probably over did things a tad as Sunday wasn't as rosy as Saturday had been. Still trying to work out the balance as to how much one can do without it coming back to bite you the following day.
Monday was quite a good day. Voice starting to come back a bit stronger, but still have to "manage" it, phlegm also starting to be easier to move and top-ups were actually few and far between during the day.
Went to bed around 7pm, final meds at 8pm and asleep around 8:30. First top up was just after 1am (really happy with that), but next one was just after 6am. It might have been more a precautionary one than fully "needed", but wasn't going to risk it. That short time between top ups last night actually goes against the grain for the last couple of days, where frequency has really dropped off (yippee), so maybe we are getting over some of the pain.
Moira had sniffles over the weekend, so to minimise the risk of me catching anything, Ruth S stayed on Sunday night as well. She was however finally in her own bed last night for a well deserved rest and break away from me. Which leads nicely to a little acknowledgement.
If you've followed the blog from the start, you'll know just what an important part my sister Ruth has played through it all. While we're both different people now from who we started out as, there is no doubt that the strength and resolve Ruth S has shown is largely behind what has got me through. She has dug deep on numerous occasions and for that I'm eternally grateful. Cheers Sis. Right at the start, everybody was stressing the importance of the support you'd need from family and friends and to some extent I took that lightly - that early bravado thing. As things progressed, this support thing has been the absolute show stopper. I never really appreciated how dependent I'd be on home care, and for such a long period of time! Or how taxing that would be on those involved. Throughout there have been a tight group of supporters there and I just want to thank each and every one of you from the bottom of my heart for your ongoing efforts in helping me through all of this and I can't wait for the recovery party (all I need now is to be able to eat and drink and we're ready to go).
Tuesday has dawned a tad overcast weather wise and also on the health front. I seem to have some sniffles today that have been slowly building up over recent days and are now fighting with the phlegm for my attention and the tissues (a box of tissues lasts a day at the moment). So, now there is something else to keep a watch on. Temperature is normal, so that is good. And, I'm drinking quite comfortably now. Not huge amounts, but little and often.
So there you go, up to date again. Mental effort required to do this has now knackered me out, so time for a rest of some sort.
Tuesday, August 24, 2010
Thursday, August 19, 2010
So What Next
Monday was last day of treatment - so here is the obligatory Yippee!!
However, I'm struggling to be overjoyed right now as of course that is only the end of phase 2. Phase 1 was diagnosis and preparation, phase 2 the actual treatments and phase 3 is the recovery & clearance.
For some reason, I was disillusioned that the recovery would be the easy bit. Treatment has been a right bugger at times - even to the extent it curtailed all my blog posting for a couple of weeks. Actually, it curtailed bloody near everything for 5 or so weeks. Once the first side effects kicked in early, it was a monster that required ongoing serious medical intervention to control. Even then, there were times when control was only used at the end of the phrase "out of.."
Monday was the last of 35 radiotherapy sessions, so as has been the norm, the weekend was yet again an unpleasant time as the medical effects for the previous week again accumulated and delivered an all too frequent blast of discomfort.
How Ruth S & Moira kept me out of the hospital on Sunday night is beyond me, but by god the three of us got almost no sleep and with the aid of some morphine top-ups we made it to Monday. The girls had Monday off anyway - supposedly to celebrate end of treatment - but instead it was a case of us all needing to catch up on sleep, so the celebrations were more of a limp yahoo as opposed to a strapping YIPPEE.
Even though the treatment was literally a matter of minutes, we spent all morning at the hospital seeing specialists, consultants, etc. The events of the weekend were laid on the table (including Ruth S going to battle with the on call oncology registrar over morphine top-ups) and meds have been revised, adjusted, amended to try and keep things smooth.
That said, the morphine top-ups have continued this week, but with less frequency, so that is a victory of sorts. Monday night not pleasant, morphine top-ups reintroduced with regularity. That was Monday.
Tuesday was a strange old day. Moira was my sole care giver for the day because of some confusion about when we wanted Heather. Believe me, if ever there was a case required as to why I shouldn't be on my own, Monday night / Tuesday is that case. Someone was looking down on us when Moira had booked Tuesday leave as well.
Tuesday morning ended up having a little vomit that caught us both by surprise. Needless to say Tuesday night wasn't wonderful, but top-ups were slightly less frequent.
Wednesday was all hands back on deck as normal and in fairness, seemed to be having a pretty good day. Then the lights went out and the fun began.
First top up was 7:15pm - before the last round of normal meds were even due - and were basically every 4 hours after that, so disjointed sleep. Ruth S ended up having to stay until Heather arrived to ensure the cover and once Maree the dist nurse arrived, it all got fun. She rang Bernard Coombs (radio oncologist) and agreed on revised top-up program. With Heather being here, have the right people on deck to make sure we're not safely exceeding the dosage, so here's hoping for a settled day and night.
I'd like to hope we get to the stage soon where a good day is consistently followed by another good day, instead of a 50% chance it is being followed by a shite one.
In closing, interesting point to remember is that even though the treatments are finished, the pain still works it's way through the system for the next week and then will abate quite quickly - so here's hoping.
However, I'm struggling to be overjoyed right now as of course that is only the end of phase 2. Phase 1 was diagnosis and preparation, phase 2 the actual treatments and phase 3 is the recovery & clearance.
For some reason, I was disillusioned that the recovery would be the easy bit. Treatment has been a right bugger at times - even to the extent it curtailed all my blog posting for a couple of weeks. Actually, it curtailed bloody near everything for 5 or so weeks. Once the first side effects kicked in early, it was a monster that required ongoing serious medical intervention to control. Even then, there were times when control was only used at the end of the phrase "out of.."
Monday was the last of 35 radiotherapy sessions, so as has been the norm, the weekend was yet again an unpleasant time as the medical effects for the previous week again accumulated and delivered an all too frequent blast of discomfort.
How Ruth S & Moira kept me out of the hospital on Sunday night is beyond me, but by god the three of us got almost no sleep and with the aid of some morphine top-ups we made it to Monday. The girls had Monday off anyway - supposedly to celebrate end of treatment - but instead it was a case of us all needing to catch up on sleep, so the celebrations were more of a limp yahoo as opposed to a strapping YIPPEE.
Even though the treatment was literally a matter of minutes, we spent all morning at the hospital seeing specialists, consultants, etc. The events of the weekend were laid on the table (including Ruth S going to battle with the on call oncology registrar over morphine top-ups) and meds have been revised, adjusted, amended to try and keep things smooth.
That said, the morphine top-ups have continued this week, but with less frequency, so that is a victory of sorts. Monday night not pleasant, morphine top-ups reintroduced with regularity. That was Monday.
Tuesday was a strange old day. Moira was my sole care giver for the day because of some confusion about when we wanted Heather. Believe me, if ever there was a case required as to why I shouldn't be on my own, Monday night / Tuesday is that case. Someone was looking down on us when Moira had booked Tuesday leave as well.
Tuesday morning ended up having a little vomit that caught us both by surprise. Needless to say Tuesday night wasn't wonderful, but top-ups were slightly less frequent.
Wednesday was all hands back on deck as normal and in fairness, seemed to be having a pretty good day. Then the lights went out and the fun began.
First top up was 7:15pm - before the last round of normal meds were even due - and were basically every 4 hours after that, so disjointed sleep. Ruth S ended up having to stay until Heather arrived to ensure the cover and once Maree the dist nurse arrived, it all got fun. She rang Bernard Coombs (radio oncologist) and agreed on revised top-up program. With Heather being here, have the right people on deck to make sure we're not safely exceeding the dosage, so here's hoping for a settled day and night.
I'd like to hope we get to the stage soon where a good day is consistently followed by another good day, instead of a 50% chance it is being followed by a shite one.
In closing, interesting point to remember is that even though the treatments are finished, the pain still works it's way through the system for the next week and then will abate quite quickly - so here's hoping.
Thursday, August 12, 2010
My Daily Routine
Thought you might be interested in what my daily routine consists of these days
I still wake up almost hourly during the night to get rid of phlegm. Fortunately this is now almost down to a roll over, spit, wipe mouth, roll back, go back to sleep exercise now.
Wake up around 6:15 to take night feed off. Throat at this stage is really sore, but not much I can do about it as once the pump is off, it's a quick flush of Jake and back to sleep for an hour or so. This sleep is actually really sound - same sort of routine, but longer periods. So, if I can start to eat and remove need for pump, sleep pattern should improve as well.
Up for good around 8:00 - 8:15 and that is when the fun starts to get the throat pain under control. Normally start with just moving water around in my mouth - somewhere near room temperature works best. Too cold only aggravates things. After 10 mins or so of that, can at least swallow albeit cautiously and ready to move on to drinking small amounts from a glass / sipper bottle. It is now 8:45 and settled into that part of my routine now.
District Nurse is due within next 15-20 mins to replace the morphine driver and Lance or Bax will arrive around 9:15 to get us ready for the trek into the hospital for treatment.
There are two variations for my "grooming". If I wake up feeling chirpy, I'll shower before going to the hosp. Otherwise, I shower before my afternoon nap.
Treatments are all now 11:30, so back home around 12:45 in time for Heather to arrive and take over looking after me. The looking after is more being there in case something happens.
I have my afternoon nap around 1:30 - 2:00pm and get a couple of hours out of it. Same old coughing, etc, but I'm told it is a sound sleep, so that is good. Strangely, can either wake up feeling rejuvenated or still knackered. Option 2 I can't explain, unless it is relating to the chill pills that I'm back to taking before the RT
Heather finishes at 5pm, so Ruth normally calls in for handover - to make sure nothing has happened I might not tell her about and she either settles in for her night shift, or hangs around until Moira checks in, then goes home.
I have my last meds and fire up the pump at 8pm, then normally straight off to bed because I just can't keep my eyes open. Last few nights have found that by propping myself up in bed for 1/2 an hour or so, seems to help minimise the first round of phlegm control. Take whatever I can get.
Boring life at moment, but hopefully with the treatments almost over, I'll start getting some energy back soon.
Some of the weird dreams seem to be going as well - another plus.
There you go, my daily routine
I still wake up almost hourly during the night to get rid of phlegm. Fortunately this is now almost down to a roll over, spit, wipe mouth, roll back, go back to sleep exercise now.
Wake up around 6:15 to take night feed off. Throat at this stage is really sore, but not much I can do about it as once the pump is off, it's a quick flush of Jake and back to sleep for an hour or so. This sleep is actually really sound - same sort of routine, but longer periods. So, if I can start to eat and remove need for pump, sleep pattern should improve as well.
Up for good around 8:00 - 8:15 and that is when the fun starts to get the throat pain under control. Normally start with just moving water around in my mouth - somewhere near room temperature works best. Too cold only aggravates things. After 10 mins or so of that, can at least swallow albeit cautiously and ready to move on to drinking small amounts from a glass / sipper bottle. It is now 8:45 and settled into that part of my routine now.
District Nurse is due within next 15-20 mins to replace the morphine driver and Lance or Bax will arrive around 9:15 to get us ready for the trek into the hospital for treatment.
There are two variations for my "grooming". If I wake up feeling chirpy, I'll shower before going to the hosp. Otherwise, I shower before my afternoon nap.
Treatments are all now 11:30, so back home around 12:45 in time for Heather to arrive and take over looking after me. The looking after is more being there in case something happens.
I have my afternoon nap around 1:30 - 2:00pm and get a couple of hours out of it. Same old coughing, etc, but I'm told it is a sound sleep, so that is good. Strangely, can either wake up feeling rejuvenated or still knackered. Option 2 I can't explain, unless it is relating to the chill pills that I'm back to taking before the RT
Heather finishes at 5pm, so Ruth normally calls in for handover - to make sure nothing has happened I might not tell her about and she either settles in for her night shift, or hangs around until Moira checks in, then goes home.
I have my last meds and fire up the pump at 8pm, then normally straight off to bed because I just can't keep my eyes open. Last few nights have found that by propping myself up in bed for 1/2 an hour or so, seems to help minimise the first round of phlegm control. Take whatever I can get.
Boring life at moment, but hopefully with the treatments almost over, I'll start getting some energy back soon.
Some of the weird dreams seem to be going as well - another plus.
There you go, my daily routine
Sunday, August 8, 2010
And He Finally Surfaces Out of The Fog
Hi Everybody, I'm back at long last - mentally if not physically.
My last post alluded to me being about to start week 5. Well week 5 is now done and dusted - and so is week 6.
Tomorrow marks the start of week 7 and because of one missed treatment (not bad everything all considered) the final treatment rolls into Monday 16th August.
I'm actually unsure where to start with trying to recount the last few weeks and while my intention had been to try and clean up my drug addled posts, in reality it is going to be easier to just lay things out as they come to mind.
While this will screw around with the chronological order of things, it will still mean the trials and tribulations are recorded and I think that is more important than having the dates exactly right.
So here goes - apologies if this is a long post, want to get things up to date as much as possible.
Admission via A&E Is Painful
On each occasion that I've been admitted via A&E, it has been a really time consuming event. Doesn't matter whether you call ahead and they know about the chemo impacts, you still end up waiting for many hours for a bed on the ward, etc. Think record was something like 14 hours.
Chemo will always win
My 2nd cycle of chemo was delayed a week because of the other issues and as such this meant I'd only receive 2 treatments instead of the planned 3. No biggie as the 3rd one was always a best case scenario one, but I tell you this, thank got there isn't going to be a third one. Round two was an absolute nightmare.
While the effects of round 1 were minimal (or so I thought), round 2 just took my legs out from under me. Within a couple of days I was vomiting blood and back in the ward. Treatment was Monday 26th, admitted to hosp on 28th, discharged 30th, then readmitted 2nd Aug and discharged again 5th Aug. Busy old time.
At this time I'm going to heap praise and gratitude on Ruth S for her support and efforts during all of this. She had sacrificed her own life over the last few weeks to get me through all of this. I couldn't have done it without her - thanks sis.
This last few weeks has also meant that I have required 24 hour "minding" when I'm not in hospital, and Moira has stepped up here as well - sharing the overnight shifts with Ruth S. My nephew Lance has also become chief chauffeur and day time "companion". Thanks to you all.
Back to chemo - if you ever take on cisplatin, it will win. I understand now that it hasn't all been about the cumulative effects of the radiotherapy, the chemo just sits in the background doing its thing and when it wants to, it lets you know it is there. While I may have experienced things quicker than other patients tend to, reality is what I've experienced is the norm and it isn't enjoyable. My only positive thought through all of this is those nasty cells in my body must be taking one hell of a beating as well.
It is hard to try and relate how crap this has made me feel over the last couple of weeks. You're in an almost continual state of sleep, wondering when the next attack of the phlegm moving is going to strike, will there be vomiting with/without blood and then also endure other "nasties". Will I ever get comfortable, when will they move me around the ward again (12:30 at night for no apparent reason springs to mind), will I be able to drink liquids again soon (thankfully now drinking reasonable freely), when will my voice come back (is slowly coming back). It just seems non-stop and on top of that, you've got your daily RT to have. Sessions are now shorter, but current dilemma is I lost 6 kg last week and the mask is now at maximum adjustment to compensate for that. If I don't regain some of the weight quickly, may have to make a whole new mask and I don't want that because of the delays it will introduce to the end of treatment.
The weight loss things stems directly from all the discomfort in the throat caused by the combined treatments and a subsequent period of a few days where the fortisip (daytime) and nigh time feeds were actually few and far between. No nutrients in = weight off. Rest assured all that is back on track and we're working hard on getting some weight back.
24/7 Medical Regime
My life seems to consist of taking drugs and/or following other medical regimes at the moment. I ended up writing up a timetable of what had to be taken and when and honestly it was quite scary as to just how may different drugs, etc I have been taking. With the latest hospital round, the drugs have been cut back quite a lot so it is more manageable, but you've still got to be on top of your game to make sure you don't miss something.
Sleep is for..
Me. How quickly I get tired still amazes me. When I'm at home, I need to have afternoon naps or I just can't last the day. A good hour or two in the afternoon does wonders, especially because at night with the feeding and morphine pumps ruling the nocturnal activities, I don't really get more than an hour of uninterrupted sleep at a time. Fortunately, getting back to sleep is a lot easier now.
Dreams or Nightmares?
I'm not sure what I have these days, but I certainly have some weird "whatevers". One of those side effects of the drugs and being in an almost constant state of drowsiness, is that I seem to "relive" the same dream again and again - like the movie being on repeat. It is weird because you wake up at say 3am and have been dreaming about your bank manager tiling your roof while driving down the road (don't laugh) and when you wake up again in an hour or so, same scenario is playing out.
Not sure I'm happy with this side effect of morphine, but if one ever needed justification for not driving while under the influence, these "whatevers" are all that is required.
Anxiety Is A Funny Thing
Over the recent weeks, with all the hospital dramas, I have been experiencing a lot of anxiety. so much in fact that I'm now back on my chill pills before the RT sessions. It isn't the treatment that makes me anxious, it is the fear of not having it. Weird. I find I also get anxious over things that would normally just pass me by. You could probably say I'm anxious about being anxious, that's about how bad it's gotten. As the health stabilises, these fears are subsiding as well, but I'm still quite worried about being left on my own and know this has placed pressure on others around me.
To help with this, I now have a nurse who spends time with me when Ruth S and co are at work, etc. Heather's first day was yesterday and while she is largely just there as a companion to talk to etc, it is comforting to know she is there should anything happen and capable of dealing with any medical situation that may arise.
The extent to which my self confidence has taken a hit, and why, took some time to fathom out. When it became clear that despite our combined efforts we couldn't keep me out of hospital, and we had an almost total dependence on the trained medics, then the anxiety with being able to get me back home started to kick in. Not helped at all by the fact that the speed of onset of some of my symptoms/reactions surprised even the hospital.
I am happy to say that these feelings are starting to abate and am hopeful I'll be more in control with each passing day.
Never Knock Or Turn Down Support
I've acknowledged some of the close support crew above, but I also need to acknowledge those on the sidelines playing their part. The support comes in many different ways, but underneath it all just knowing you folk care makes all of this so much more tolerable. The importance of your txts (humorous and otherwise) and visits really do lift my spirits and help keep me part of a world the medical dramas seem to try their hardest to keep me away from.
Off for my nap now
cheers
My last post alluded to me being about to start week 5. Well week 5 is now done and dusted - and so is week 6.
Tomorrow marks the start of week 7 and because of one missed treatment (not bad everything all considered) the final treatment rolls into Monday 16th August.
I'm actually unsure where to start with trying to recount the last few weeks and while my intention had been to try and clean up my drug addled posts, in reality it is going to be easier to just lay things out as they come to mind.
While this will screw around with the chronological order of things, it will still mean the trials and tribulations are recorded and I think that is more important than having the dates exactly right.
So here goes - apologies if this is a long post, want to get things up to date as much as possible.
Admission via A&E Is Painful
On each occasion that I've been admitted via A&E, it has been a really time consuming event. Doesn't matter whether you call ahead and they know about the chemo impacts, you still end up waiting for many hours for a bed on the ward, etc. Think record was something like 14 hours.
Chemo will always win
My 2nd cycle of chemo was delayed a week because of the other issues and as such this meant I'd only receive 2 treatments instead of the planned 3. No biggie as the 3rd one was always a best case scenario one, but I tell you this, thank got there isn't going to be a third one. Round two was an absolute nightmare.
While the effects of round 1 were minimal (or so I thought), round 2 just took my legs out from under me. Within a couple of days I was vomiting blood and back in the ward. Treatment was Monday 26th, admitted to hosp on 28th, discharged 30th, then readmitted 2nd Aug and discharged again 5th Aug. Busy old time.
At this time I'm going to heap praise and gratitude on Ruth S for her support and efforts during all of this. She had sacrificed her own life over the last few weeks to get me through all of this. I couldn't have done it without her - thanks sis.
This last few weeks has also meant that I have required 24 hour "minding" when I'm not in hospital, and Moira has stepped up here as well - sharing the overnight shifts with Ruth S. My nephew Lance has also become chief chauffeur and day time "companion". Thanks to you all.
Back to chemo - if you ever take on cisplatin, it will win. I understand now that it hasn't all been about the cumulative effects of the radiotherapy, the chemo just sits in the background doing its thing and when it wants to, it lets you know it is there. While I may have experienced things quicker than other patients tend to, reality is what I've experienced is the norm and it isn't enjoyable. My only positive thought through all of this is those nasty cells in my body must be taking one hell of a beating as well.
It is hard to try and relate how crap this has made me feel over the last couple of weeks. You're in an almost continual state of sleep, wondering when the next attack of the phlegm moving is going to strike, will there be vomiting with/without blood and then also endure other "nasties". Will I ever get comfortable, when will they move me around the ward again (12:30 at night for no apparent reason springs to mind), will I be able to drink liquids again soon (thankfully now drinking reasonable freely), when will my voice come back (is slowly coming back). It just seems non-stop and on top of that, you've got your daily RT to have. Sessions are now shorter, but current dilemma is I lost 6 kg last week and the mask is now at maximum adjustment to compensate for that. If I don't regain some of the weight quickly, may have to make a whole new mask and I don't want that because of the delays it will introduce to the end of treatment.
The weight loss things stems directly from all the discomfort in the throat caused by the combined treatments and a subsequent period of a few days where the fortisip (daytime) and nigh time feeds were actually few and far between. No nutrients in = weight off. Rest assured all that is back on track and we're working hard on getting some weight back.
24/7 Medical Regime
My life seems to consist of taking drugs and/or following other medical regimes at the moment. I ended up writing up a timetable of what had to be taken and when and honestly it was quite scary as to just how may different drugs, etc I have been taking. With the latest hospital round, the drugs have been cut back quite a lot so it is more manageable, but you've still got to be on top of your game to make sure you don't miss something.
Sleep is for..
Me. How quickly I get tired still amazes me. When I'm at home, I need to have afternoon naps or I just can't last the day. A good hour or two in the afternoon does wonders, especially because at night with the feeding and morphine pumps ruling the nocturnal activities, I don't really get more than an hour of uninterrupted sleep at a time. Fortunately, getting back to sleep is a lot easier now.
Dreams or Nightmares?
I'm not sure what I have these days, but I certainly have some weird "whatevers". One of those side effects of the drugs and being in an almost constant state of drowsiness, is that I seem to "relive" the same dream again and again - like the movie being on repeat. It is weird because you wake up at say 3am and have been dreaming about your bank manager tiling your roof while driving down the road (don't laugh) and when you wake up again in an hour or so, same scenario is playing out.
Not sure I'm happy with this side effect of morphine, but if one ever needed justification for not driving while under the influence, these "whatevers" are all that is required.
Anxiety Is A Funny Thing
Over the recent weeks, with all the hospital dramas, I have been experiencing a lot of anxiety. so much in fact that I'm now back on my chill pills before the RT sessions. It isn't the treatment that makes me anxious, it is the fear of not having it. Weird. I find I also get anxious over things that would normally just pass me by. You could probably say I'm anxious about being anxious, that's about how bad it's gotten. As the health stabilises, these fears are subsiding as well, but I'm still quite worried about being left on my own and know this has placed pressure on others around me.
To help with this, I now have a nurse who spends time with me when Ruth S and co are at work, etc. Heather's first day was yesterday and while she is largely just there as a companion to talk to etc, it is comforting to know she is there should anything happen and capable of dealing with any medical situation that may arise.
The extent to which my self confidence has taken a hit, and why, took some time to fathom out. When it became clear that despite our combined efforts we couldn't keep me out of hospital, and we had an almost total dependence on the trained medics, then the anxiety with being able to get me back home started to kick in. Not helped at all by the fact that the speed of onset of some of my symptoms/reactions surprised even the hospital.
I am happy to say that these feelings are starting to abate and am hopeful I'll be more in control with each passing day.
Never Knock Or Turn Down Support
I've acknowledged some of the close support crew above, but I also need to acknowledge those on the sidelines playing their part. The support comes in many different ways, but underneath it all just knowing you folk care makes all of this so much more tolerable. The importance of your txts (humorous and otherwise) and visits really do lift my spirits and help keep me part of a world the medical dramas seem to try their hardest to keep me away from.
Off for my nap now
cheers
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