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
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