It's taken more like a week and a half to recover from this one so that only leaves this week and a half to get things a bit sorted out, which really makes a difference (sub-text: the place is a tip). Doesn't fill me with anything but foreboding for the next one but at least when I've done that I can treat myself to the thought that there's only one after that and then it's over. (Pinning a lot on the radio not being so bad - foolish?)
Got my Open Uni 10-pt course (Human Nutrition) through the post so starting on that this week. For some reason it's making me feel like a kid with a new toy, I'm so excited. Are my horizons shrinking or am I finding a new lease of life? One annoying thing - as I am on Employment Support Allowance, the course is paid for by the OU, even though it's contributions-based not income-based benefit (interestingly it's different in Scotland, which seems a tad unfair!). Did they tell me at the Jobcentre about this wonderful training opportunity (and hundreds of thousands of other people)? Never mentioned it. WHY NOT? If they are so keen to get people back into work, particularly people like me who can't look for work at the moment but are still able to read a bit, wouldn't it be a good thing for people to be able to get some skills and show a future employer they have done something whilst out of work without having to lay out money to do it? I shall write in...
Anyway, study calls..
Tuesday 23 February 2010
Monday 15 February 2010
oak, ash, hazel, hawthorn and willow.
Those are the woods with protective powers and therefore the ones to touch. Clearly I was communing with MDF as I have, since the last rather optimistic entry, felt like I have been beaten up and am suffering from various organ failures. There is the unpleasant throbbing stabbing pain in the small of my back which I can't seem to find a position to get away from, in my lungs and in my back where the scar is, the Lanzarote landscape of ulcers in my mouth, the busting high blood-pressure head and the feeling that the pains are not so much flu-like that you can sleep through, more like being accidentally drafted into the percussion section of an orchestra where the musicians mistake your feet and ankles for their glockenspiel and keep hitting them. With flu you crawl into bed and sleep your way out of the aches and pains. This is so uncomfortable that you have to keep twitching away from the jabs and can't find a position to fall (and stay) asleep in. To quote Patsy in AbFab (which I have revisited recently) "I'm not happy".
The only way out of this has been to dose myself to the hilt with painkillers, so I don't feel as bad today. Not nice though, as you can feel this strange sensation of where the pain really is underneath the fug. I'm hoping this will wear off soon but will check with the chemo nurse this afternoon. :-( Not sure how I'm going to deal with eight more weeks of this if it's going to be unrelenting.
Other than that the kids and I are having a smashing week being exceptionally lazy and doing nought (they're out with Jennifer at the moment so they will expend some energy). We spent all day Tuesday lounging around watching the afore-mentioned AbFab and eating nothing but pancakes. Lucy didn't even manage to get out of her pyjamas. And as they went shopping on their own on Monday for our dinner and keep bringing me cups of tea I continue to feel very well looked after.
The only way out of this has been to dose myself to the hilt with painkillers, so I don't feel as bad today. Not nice though, as you can feel this strange sensation of where the pain really is underneath the fug. I'm hoping this will wear off soon but will check with the chemo nurse this afternoon. :-( Not sure how I'm going to deal with eight more weeks of this if it's going to be unrelenting.
Other than that the kids and I are having a smashing week being exceptionally lazy and doing nought (they're out with Jennifer at the moment so they will expend some energy). We spent all day Tuesday lounging around watching the afore-mentioned AbFab and eating nothing but pancakes. Lucy didn't even manage to get out of her pyjamas. And as they went shopping on their own on Monday for our dinner and keep bringing me cups of tea I continue to feel very well looked after.
Thursday 11 February 2010
PS for the day - part 1" update on the chemo" below!.
As an addendum to today's entry below, my brain appears to be working better at the mo as well, as I've realised I have been remiss in not thanking Emma (Meads) so much for taking personal responsibility for my falling-apart oven and getting the very kindly Garth who does kitchens to come round with her and them both to struggle with my grease-laden door and ancient super-glue to do a quick fix and allow catering in the household to continue! So for that and for all the other stuff you've looked after me with Emma thank you, you are a star and I'll source the best ginger cake for you I can find!
I also forgot to add on a hospital-based note that another of the classic indicators of failure of communication in the hospital is the red dot. They put this on your blood test form to indicate that you are a priority and can queue-jump because they don't want you hanging around where you could pick up nasty infections when you're on chemo. I have now met at least three other patients (and I was one myself until I noticed other people doing it) who have duly taken their number and waited for hours in amongst everyone else not realising they should stand at the door and go ahead of everyone. Furthermore they don't have a notice up anywhere explaining to the people with numbers that some people may legitimately be seen first (there wouldn't need to be anything on the notice saying why so I can't understand why they don't) so you get looked at daggers. All very preventable. So for anyone in this position - don't forget to ask for your red dot when given the blood test form at hospital or by your GP so that you don't have to hang around!
Meanwhile Anne (Thornton) if you're reading this could you please let me have the number of your friend who I was going to approach for this letter to the PLAS again as I can't find it - I haven't forgotten and still intend to write - you still willing to join in?
I also forgot to add on a hospital-based note that another of the classic indicators of failure of communication in the hospital is the red dot. They put this on your blood test form to indicate that you are a priority and can queue-jump because they don't want you hanging around where you could pick up nasty infections when you're on chemo. I have now met at least three other patients (and I was one myself until I noticed other people doing it) who have duly taken their number and waited for hours in amongst everyone else not realising they should stand at the door and go ahead of everyone. Furthermore they don't have a notice up anywhere explaining to the people with numbers that some people may legitimately be seen first (there wouldn't need to be anything on the notice saying why so I can't understand why they don't) so you get looked at daggers. All very preventable. So for anyone in this position - don't forget to ask for your red dot when given the blood test form at hospital or by your GP so that you don't have to hang around!
Meanwhile Anne (Thornton) if you're reading this could you please let me have the number of your friend who I was going to approach for this letter to the PLAS again as I can't find it - I haven't forgotten and still intend to write - you still willing to join in?
get the FEC behind me and bring me some T!
Well it's absurdly early to be posting something on the blog but Mike is getting a new bed delivered (hoorah!) between 10 and 12 so this one has had to be vacated ready. Do I mind this because I'm aching with flu-like symptoms and wiped out with tiredness? Bring hither the wood for me to touch - I feel absolutely fine and normal. Much better than on the FEC. Can it possibly last? That's what the wood is for. And bizarrely rather than feeling tired I was wide awake in the middle of the night for about two hours (not in a fretful way, just thinking time) but I'm not feeling sleep-deprived this morning either.
The only sign of anything is in my hips. When I was a student (and even a few times after that) there'd be stupid parties where I'd end up sleeping on the floor or in the back of my mini and wake up feeling like somebody had drilled a hole through my hips from the outside (no lewd thoughts required or remotely justified unfortunately) - I feel a tiny bit like that. But it could just be Mike's old bed I suppose... Don't know whether it's the steroids helping me (yes they're still around so I'm still a round for a while longer I guess) that I'm taking a higher dose of now and have to start the day before the treatment. The T treatment itself is a lot easier because it's just one drip for about an hour and a quarter in the company of a good book (food-related of course - terrifying stuff called The Omnivore's Dilemma" by Michael Pollan, rush out and buy), so that was all very comfortable.
And Mike's loving care and attention of course...
So all those of you who have been threatening me with lunch or even something more exotic (Biker, Catharine and Bernie, Louis), get yer diaries out and unless things take a downturn, I'm stepping out for the next three weeks!
Just a note quickly about the comments instructions - there is no need to worry about having to set up your own googlemail account as Mike set one up from the blog for you to use. I know one or two of you were bothered about that but it can all come from off this site and not from your e-mail address at all.
(I'm not going to talk about nostril hairs at this point, it would only spoil an otherwise optimistic entry! Perhaps I needn't even elaborate...)
The only sign of anything is in my hips. When I was a student (and even a few times after that) there'd be stupid parties where I'd end up sleeping on the floor or in the back of my mini and wake up feeling like somebody had drilled a hole through my hips from the outside (no lewd thoughts required or remotely justified unfortunately) - I feel a tiny bit like that. But it could just be Mike's old bed I suppose... Don't know whether it's the steroids helping me (yes they're still around so I'm still a round for a while longer I guess) that I'm taking a higher dose of now and have to start the day before the treatment. The T treatment itself is a lot easier because it's just one drip for about an hour and a quarter in the company of a good book (food-related of course - terrifying stuff called The Omnivore's Dilemma" by Michael Pollan, rush out and buy), so that was all very comfortable.
And Mike's loving care and attention of course...
So all those of you who have been threatening me with lunch or even something more exotic (Biker, Catharine and Bernie, Louis), get yer diaries out and unless things take a downturn, I'm stepping out for the next three weeks!
Just a note quickly about the comments instructions - there is no need to worry about having to set up your own googlemail account as Mike set one up from the blog for you to use. I know one or two of you were bothered about that but it can all come from off this site and not from your e-mail address at all.
(I'm not going to talk about nostril hairs at this point, it would only spoil an otherwise optimistic entry! Perhaps I needn't even elaborate...)
Friday 5 February 2010
go on, give it another go!
It was so nice to get a comment yesterday from someone who has only just got the blog address - it reminded me that people are still reading this. But it does feel a bit like talking to a vacuum when you don't get any feedback which has sometimes (you may have noticed!) made me feel a bit less encouragavised to post anything, for which I have in turn been chastised! so for those it has so far defeated, I am re-posting the steps to follow. Just in case any of you are tempted to stare defeat in the face and proclaim "NO! I shall make this work"!
Going to Cannizaro with Karen and Helen today which judging by the beautiful weather will be lovely. Trying to ignore that Wednesday looms...and refrain from scratching my now spot-covered blotchy face. I can't work out (as with so many of these things) whether it is a swarm of tiny little midge things that seem to have infected one of my favourite plants and taken a fancy to me (biting things have always been more attracted to me than rich femninist men) or another effect of the chemo (it's not on the list I don't think). Whichever it is I could scratch my face off at the mo - very irritating. Witchhazel here I come.
Here goes:
• Click on the comments link under the blog entry (the one that says number comments after Posted by Belinda’s updates at time)
• Type your comment into the box entitled Post your comment. Don’t forget to put your name as otherwise it will come up as anonymous.
• When you're ready to post, select Google Account from the dropdown list next to Comment as:
• Press Post Comment
• For some reason it seems then to come up with Your request could not be processed. Please try again. So press Post Comment again.
• When the login screen comes up, type belindasnews@googlemail.com in the email box and belinda1 in the password. Do not tick stay signed in. Press the Sign in tab
• Fill in the word verification as requested and press the Post Comment tab.
• Remember to click on Sign out when the next blank Post comment screen comes up again.
Ah gowon. Gowon, gowon, gowon, gowon, gowon, gowon, gowon!
Going to Cannizaro with Karen and Helen today which judging by the beautiful weather will be lovely. Trying to ignore that Wednesday looms...and refrain from scratching my now spot-covered blotchy face. I can't work out (as with so many of these things) whether it is a swarm of tiny little midge things that seem to have infected one of my favourite plants and taken a fancy to me (biting things have always been more attracted to me than rich femninist men) or another effect of the chemo (it's not on the list I don't think). Whichever it is I could scratch my face off at the mo - very irritating. Witchhazel here I come.
Here goes:
• Click on the comments link under the blog entry (the one that says number comments after Posted by Belinda’s updates at time)
• Type your comment into the box entitled Post your comment. Don’t forget to put your name as otherwise it will come up as anonymous.
• When you're ready to post, select Google Account from the dropdown list next to Comment as:
• Press Post Comment
• For some reason it seems then to come up with Your request could not be processed. Please try again. So press Post Comment again.
• When the login screen comes up, type belindasnews@googlemail.com in the email box and belinda1 in the password. Do not tick stay signed in. Press the Sign in tab
• Fill in the word verification as requested and press the Post Comment tab.
• Remember to click on Sign out when the next blank Post comment screen comes up again.
Ah gowon. Gowon, gowon, gowon, gowon, gowon, gowon, gowon!
Monday 1 February 2010
wearing down but bearing up
I'm in that lovely midway patch between chemo sessions when I feel relatively unencumbered by all the side-effects of it but not too close to the next one to be dreading it yet. Which meant that I could thoroughly enjoy Saturday evening celebrating Liz's 60th birthday, together with a glass and a half of wine and a glass of champagne which had no obvious adverse effect on me whatsoever. Which is nice.
Although the snow overnight is very pretty it has slightly put paid to my fantasy of doing a bit of gardening (well that's exercise I can get without having to worry about what's on my head and whether it will fall off - if it does there's only the builders next door to see it, and I'm better looking than all but one of them without my headgear anyway). I am beginning to notice (and be a little worn down by) some of the permanent features of being poisoned, like a slightly vacant expression which I have realised is because my eyelashes have almost completely run away without my noticing and my eyebrows have started to thin. So if you think I'm turning into AmIbovvered when you talk to me, it's that. My skin's taking a bit of a pounding now too - a bit aged looking and frequent itchy spots over my face which isn't fun. And a cough which I can't shift and which is starting to remind me of a horrible feature of cystic fibrosis that someone once told me about, which is where you are woken up by a violent cough because it's about to choke you - not nice! It's because in amongst the hair loss are the cilia, microscopic hairs that line the respiratory system, which makes congestion harder to shift. They also line the digestive system which is apparently what accounts for the heartburn, acid stomach etc although I'm not really suffering much from that, touch wood.
One thing I am really struck by is how many people are telling me how strong I am. It's a very difficult comment to react to, although it's usually said admiringly, which is nice, but I confess to being a little puzzled by it at times. I suppose it's because over the last few years I have indeed learned how strong I am, particularly through those (often horribly lonely) years after splitting up from John, of taking entire responsibility for my home and the kids when they're with me and working mostly full-time as well. The situation I'm in at the moment, for all it's with an awful and scary disease, is actually a lot easier on me than it would have been had I still been at work (and just one reason why I am so glad I made the decision to leave the SFO). I have a lovely warm house, two wonderful fun children whose lives go fascinatingly on developing, Mike who is a tower of strength and a great cook to boot, John who has picked up with the kids when I have needed it at the drop of a hat and a sterling bunch of friends who have been wonderfully supportive on practical and emotional levels. An awful lot of people go through this sort of crisis without any of this support which I think is the main thing that is helping me. Perhaps they are really the strong ones?
I have also the benefit that I was about to make a new start when all this happened, and I still am when I am not feeling tired or unwell. So I'm quite buoyant no matter how many spots and splutters because I am still in that very lucky position that I was in before. And in the same way as it can be a bad reflection (I remember being genuinely affronted at an electricity bill plopping through the door of my university flat within days of my dad dying), it is also a good one that "life goes on". It doesn't all start revolving around the cancer, even if the cancer is a huge and nasty distraction. Thankfully!
Although the snow overnight is very pretty it has slightly put paid to my fantasy of doing a bit of gardening (well that's exercise I can get without having to worry about what's on my head and whether it will fall off - if it does there's only the builders next door to see it, and I'm better looking than all but one of them without my headgear anyway). I am beginning to notice (and be a little worn down by) some of the permanent features of being poisoned, like a slightly vacant expression which I have realised is because my eyelashes have almost completely run away without my noticing and my eyebrows have started to thin. So if you think I'm turning into AmIbovvered when you talk to me, it's that. My skin's taking a bit of a pounding now too - a bit aged looking and frequent itchy spots over my face which isn't fun. And a cough which I can't shift and which is starting to remind me of a horrible feature of cystic fibrosis that someone once told me about, which is where you are woken up by a violent cough because it's about to choke you - not nice! It's because in amongst the hair loss are the cilia, microscopic hairs that line the respiratory system, which makes congestion harder to shift. They also line the digestive system which is apparently what accounts for the heartburn, acid stomach etc although I'm not really suffering much from that, touch wood.
One thing I am really struck by is how many people are telling me how strong I am. It's a very difficult comment to react to, although it's usually said admiringly, which is nice, but I confess to being a little puzzled by it at times. I suppose it's because over the last few years I have indeed learned how strong I am, particularly through those (often horribly lonely) years after splitting up from John, of taking entire responsibility for my home and the kids when they're with me and working mostly full-time as well. The situation I'm in at the moment, for all it's with an awful and scary disease, is actually a lot easier on me than it would have been had I still been at work (and just one reason why I am so glad I made the decision to leave the SFO). I have a lovely warm house, two wonderful fun children whose lives go fascinatingly on developing, Mike who is a tower of strength and a great cook to boot, John who has picked up with the kids when I have needed it at the drop of a hat and a sterling bunch of friends who have been wonderfully supportive on practical and emotional levels. An awful lot of people go through this sort of crisis without any of this support which I think is the main thing that is helping me. Perhaps they are really the strong ones?
I have also the benefit that I was about to make a new start when all this happened, and I still am when I am not feeling tired or unwell. So I'm quite buoyant no matter how many spots and splutters because I am still in that very lucky position that I was in before. And in the same way as it can be a bad reflection (I remember being genuinely affronted at an electricity bill plopping through the door of my university flat within days of my dad dying), it is also a good one that "life goes on". It doesn't all start revolving around the cancer, even if the cancer is a huge and nasty distraction. Thankfully!
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