Just this morning, I'm feeling a little better. I'm starting to manage the stringy mucous better, I think - I still get phlegm in my throat, and clearing it still makes me heave, but I'm controlling the heaving so I'm no longer actually sick. So yesterday I 'ate' about 200ml of goo, and tried to nibble various things none of which actually really worked, but overall I did get a few mouthfuls of nourishment down me. Am dehydrating a bit, I recognise, so syringing in water - that is no longer making me immediately drool like a hungry blood hound, or be sick, so I guess the liquid is actually being used by my body now, which is a relief. I still havn't dared to try cleaning my teeth again yet - that is on the list of things for this morning. I have never known a situation where I felt better not cleaning them, it is very strange. But I think my vomit-levels are less precarious and it should be safe if I'm careful.
You probably don't want to know all that, but I figure, what the hell, why shouldn't you join in.
I was going to book myself into hospital, I tried yesterday morning and the best they could (would) offer me was a bed for the weekend so I could have a bit of quiet - that's no good. None of the normal nursing/doctoring staff is there, and you get standard diet - an example of last time I was in for a weekend, a steak haché with rice, dry. That is no help when you have a fragile appetite and are there to get yourself bolstered up. So I'm going to see my doctor today, she can prescribe stronger anti-nausea things - why didn't I think of that before? These medications we take are so carefully controlled, you have to have special prescription forms for them, and they are handed out in very small quantities; I had in my mind that only the hospitals could prescribe them. But no, apparently a normal doctor can... I'm a bit slow. Anyway - realising that the hospital wasn't there to help me was actually salutary, I think. Once the treatment is over, they no longer want you - you have to learn to cope on your own. So, I got dressed and took Lionel into town. I didn't overdo it by any means - sat down on the new Lips couches they've installed while Lionel queued, things like that. Did one end of the shopping centre to the other, one shop (food). Went home, slept for several hours. That is how weak I am, it's pathetic. The day before - or was it two days? it was briefly nice, so we walked slowly into the village, which was fine; but I had real trouble walking home again (all uphill), and was having to hold onto things. My legs are just so weak.
So - resolution is, I have to make sure I do exercise, a little every day. I recognise I was allowing myself to get into a 'poor me invalid' state, which is no good for anyone. Right now I'm in bed - it's still early - and I have 2 cats keeping me company, which is lovely. They have been getting perturbed recently by me illness, too, and it is good to see them more relaxed.
This is an incoherent post, but I just can't be bothered to put it into coherence.
February 25, 2010
February 21, 2010
Bright and cheerful eh
Sooooo - all treatments done. Yes, I should be bright and cheerful. But I've been putting off updating this, because firstly when I got back from chemo, I had a really bad time - I thought I had a cold on top of the post-chemo nausea - and lost 2 or 3 kg; I'm back on the food now, but I'm having dreadful problems with hyper-salivation (and the saliva is deformed, stringy, thick, have to spit it) and thick choking phlegm. Absolutely disgusting and ok I won't say any more about it, other than absolutely disgusting, a known side-effect of radio-therapy mouth/neck treatments and oh god when will it stop.
I'm feeling really depressed and tearful this morning. Just gets you sometimes. It's because my beloved Debs has a swollen lymph node in her neck - we've always been frighteningly in synch in our lives - and I'm really pushing her to go to an ENT person now, don't wait for months of anti-biotics and dentists and ventilator stuff and ignoring it, like I did. Go early, be reassured and/or treated early.
Because this cancer's survival statistics are not good, however good the treatment I am getting may be (and it is), there is still only a 50% 5 year survival rate. One of the principle reasons is because these cancers are hard to identify, and get diagnosed late (like mine, stage 4 - just I'm lucky that it had only spread to the tongue, not to any other parts of the body).
This is a hideous experience, it is depressing, it is a constant battle and sometimes you don't feel able to laugh and be cheery about it. But I do recognise that I am very, very lucky compared to many people. I am not disfigured. I still have my tongue. I can talk. I will be able to eat again. And I do believe my doctors when they say my treatment is a cure, not just a temporary palliative. But hell, it is hard to be chirpy all the time.
I'm feeling really depressed and tearful this morning. Just gets you sometimes. It's because my beloved Debs has a swollen lymph node in her neck - we've always been frighteningly in synch in our lives - and I'm really pushing her to go to an ENT person now, don't wait for months of anti-biotics and dentists and ventilator stuff and ignoring it, like I did. Go early, be reassured and/or treated early.
Because this cancer's survival statistics are not good, however good the treatment I am getting may be (and it is), there is still only a 50% 5 year survival rate. One of the principle reasons is because these cancers are hard to identify, and get diagnosed late (like mine, stage 4 - just I'm lucky that it had only spread to the tongue, not to any other parts of the body).
This is a hideous experience, it is depressing, it is a constant battle and sometimes you don't feel able to laugh and be cheery about it. But I do recognise that I am very, very lucky compared to many people. I am not disfigured. I still have my tongue. I can talk. I will be able to eat again. And I do believe my doctors when they say my treatment is a cure, not just a temporary palliative. But hell, it is hard to be chirpy all the time.
February 7, 2010
Comments - not working??
Janeywoo tried to post a comment the other day, and it wouldn't - if you can't, please feel free to mail me, as Kat and Janey did. I appreciate the communication! Thank you.
Breakfast in bed
I'm going to try to piece together the last few hours of my life; a fairly typical early morning here. Some of it gets graphic, I guess - you can avoid those bits.
7.30, wake up call, with temperature and blood pressure checks. 7.45, breakfast appears - a piece of cheese and a tilleul de tisane (lime infusion?). Immediately after, or possibly before, some time around then, nurse appears with day's medication and nutrition pack, and sets it all up for me. I discuss chamomile tisane with her, because the hospital dentist said it's good for mucite (inflammation of the mucal membrane).
Because I presently have an abominable mucite in my mouth and throat, eating or drinking is not possible without help (yeah great - had JUST got back to normal-ish eating capacity, really looking forward to my meal, when wallop, intense pain cuts in trying to swallow; this was from yesterday lunch time. God has a really bad sense of humour). And in any case, when I wake up my mouth is dry as the bottom of a clean parrot cage, since the saliva-circuit no longer functions properly. So, before taking advantage of breakfast, I have some health routines to go through.
- Pills in water to be disolving while do rest - 5 pills, seems such a lot
- Anti-constipation stuff ditto
- Mouth wash - 50ml with a mix of bicarb of soda 1.4%, aspirin and xylocaine, anasthetic for mouth. Swill and gargle. Gargling is an art, since I have to be careful not to choke, and also not to gag. More on this issue in a minute.
- 2 teaspoons of xylocaine gel, this increases the mouth anasthetic and above all anaesthetises the throat; plus because it's a gel, it sticks and stays while you eat/drink.
- Cream on thigh and wrist graft scars to help them heal
- Cream on face and neck to help the affects from the radiotherapy
Really doesn't sound much, does it? You'd be amazed how long it all takes.
Panick moment when I leave the bathroom, standing upright - you can start avoiding this paragraph now if you like. I find that I have a real issue with something (either gel or mucas) trying to go down the wrong way. Since the op., I have lost the 'hawk' reflex in the 'hawk and spit' bit. I cannot clear mucas or food that is at the back of my throat, you know, just where it runs when you have a cold; where the nose joins the throat. Being unable to hawk, but really needing to clear the threat to prevent choking, my body's reaction is to gag. I also try taking tiny tiny sips of water, to swallow and encourage whatever it is to go down the right way - a somewhat risky action, since it is extremely easy to choke on water; the anaesthetised throat at this point is unhelpful, because I am not really in touch with what's going on. But I am really concerned not to let the gagging become actual vomiting, I've just spent a week getting my system back to normal non-vomit state.
This takes several unpleasant minutes to clear, but I sort it.
Back to the pills and anti-constipation stuff. Manage to tip half the anti-constipation stuff over my bed - first time I've done that. Very irritating, rather wet. Still, have a syringe-full, that's a start.
It is now 8.15. My tisane is cold, but it doesn't matter, I am so used to eating and drinking cold things now. I dig in to my cheese - not literally, of course; it is plastic cheese in a plastic pack, so first of all I battle with actually getting access to it at all. It is a sort of mimolette. At 8.30, they come to take the tray away, but I hang on to my cup of tisane, which I won't actually finish until 9.00; at some point I wake up with it in my lap, not tipped over but my tendency to fall asleep unexpectedly can have consequences!
At last I have finished it, so I finally plug myself into my goo machine, and go in quest of dry sheets. The lovely ladies are just in the corridor, and agree to do my bed immediately, provided I pay them weekend overtime rates :). They also let me know that they will have chamomile tisane available as of lunch time, which is excellent.
I pop down to the nurse's office to see if she thinks I should take another pack of anti-constipation stuff, because I'd lost half the dose, she agrees. Back to my room - oh, all this popping around is a big adventure for me, generally, because I am attached to drips and the goo, dragging my stand around with me, I honestly don't move much. The goo pump has a certain battery life, but frankly it is ante-deluvian technology (there's this little fly-wheel on the outside that sends the dose through the tube), and it is big and lumpy and generally a pain to trundle around with. My one at home is dinky. So - back to my room, and quickly do my careful tooth hygiene before the ladies have finished changing the bed, so they can get in and clean the bathroom. Get onto the bed to be out of their way, enjoying their good-natured banter. They fetch me the hair-dryer so I can do my full toilette including hair when they've gone.
Re-do the additional dose of anti-constipation stuff, without accident, and contemplate where to get more water; I am on my pre-chemo special protocol, where I have to take 3 packs of experimental powder a day; the powder is to assist in protecting the mouth/throat from the worst of the radiation affects, and I think it is doing a damn good job, or I'm just lucky. I take them mid-morning, mid-afternoon and after dinner; because I don't have a food processor handy here, I have to tip the packet of extremely greasy powder into half a bottle of water and do a cocktail mix as best I can; I generally don't have too much left over in lumps, but certainly the consistency of the powder really needs some work before they commercialise this product!
Decide to write this up - offline initially, to save my precious online time! (I'm on a key, buy hours up front - I managed to use 6 out of 8 hours yesterday!!). It is now 10.16. Amazing, where did my morning go???
7.30, wake up call, with temperature and blood pressure checks. 7.45, breakfast appears - a piece of cheese and a tilleul de tisane (lime infusion?). Immediately after, or possibly before, some time around then, nurse appears with day's medication and nutrition pack, and sets it all up for me. I discuss chamomile tisane with her, because the hospital dentist said it's good for mucite (inflammation of the mucal membrane).
Because I presently have an abominable mucite in my mouth and throat, eating or drinking is not possible without help (yeah great - had JUST got back to normal-ish eating capacity, really looking forward to my meal, when wallop, intense pain cuts in trying to swallow; this was from yesterday lunch time. God has a really bad sense of humour). And in any case, when I wake up my mouth is dry as the bottom of a clean parrot cage, since the saliva-circuit no longer functions properly. So, before taking advantage of breakfast, I have some health routines to go through.
- Pills in water to be disolving while do rest - 5 pills, seems such a lot
- Anti-constipation stuff ditto
- Mouth wash - 50ml with a mix of bicarb of soda 1.4%, aspirin and xylocaine, anasthetic for mouth. Swill and gargle. Gargling is an art, since I have to be careful not to choke, and also not to gag. More on this issue in a minute.
- 2 teaspoons of xylocaine gel, this increases the mouth anasthetic and above all anaesthetises the throat; plus because it's a gel, it sticks and stays while you eat/drink.
- Cream on thigh and wrist graft scars to help them heal
- Cream on face and neck to help the affects from the radiotherapy
Really doesn't sound much, does it? You'd be amazed how long it all takes.
Panick moment when I leave the bathroom, standing upright - you can start avoiding this paragraph now if you like. I find that I have a real issue with something (either gel or mucas) trying to go down the wrong way. Since the op., I have lost the 'hawk' reflex in the 'hawk and spit' bit. I cannot clear mucas or food that is at the back of my throat, you know, just where it runs when you have a cold; where the nose joins the throat. Being unable to hawk, but really needing to clear the threat to prevent choking, my body's reaction is to gag. I also try taking tiny tiny sips of water, to swallow and encourage whatever it is to go down the right way - a somewhat risky action, since it is extremely easy to choke on water; the anaesthetised throat at this point is unhelpful, because I am not really in touch with what's going on. But I am really concerned not to let the gagging become actual vomiting, I've just spent a week getting my system back to normal non-vomit state.
This takes several unpleasant minutes to clear, but I sort it.
Back to the pills and anti-constipation stuff. Manage to tip half the anti-constipation stuff over my bed - first time I've done that. Very irritating, rather wet. Still, have a syringe-full, that's a start.
It is now 8.15. My tisane is cold, but it doesn't matter, I am so used to eating and drinking cold things now. I dig in to my cheese - not literally, of course; it is plastic cheese in a plastic pack, so first of all I battle with actually getting access to it at all. It is a sort of mimolette. At 8.30, they come to take the tray away, but I hang on to my cup of tisane, which I won't actually finish until 9.00; at some point I wake up with it in my lap, not tipped over but my tendency to fall asleep unexpectedly can have consequences!
At last I have finished it, so I finally plug myself into my goo machine, and go in quest of dry sheets. The lovely ladies are just in the corridor, and agree to do my bed immediately, provided I pay them weekend overtime rates :). They also let me know that they will have chamomile tisane available as of lunch time, which is excellent.
I pop down to the nurse's office to see if she thinks I should take another pack of anti-constipation stuff, because I'd lost half the dose, she agrees. Back to my room - oh, all this popping around is a big adventure for me, generally, because I am attached to drips and the goo, dragging my stand around with me, I honestly don't move much. The goo pump has a certain battery life, but frankly it is ante-deluvian technology (there's this little fly-wheel on the outside that sends the dose through the tube), and it is big and lumpy and generally a pain to trundle around with. My one at home is dinky. So - back to my room, and quickly do my careful tooth hygiene before the ladies have finished changing the bed, so they can get in and clean the bathroom. Get onto the bed to be out of their way, enjoying their good-natured banter. They fetch me the hair-dryer so I can do my full toilette including hair when they've gone.
Re-do the additional dose of anti-constipation stuff, without accident, and contemplate where to get more water; I am on my pre-chemo special protocol, where I have to take 3 packs of experimental powder a day; the powder is to assist in protecting the mouth/throat from the worst of the radiation affects, and I think it is doing a damn good job, or I'm just lucky. I take them mid-morning, mid-afternoon and after dinner; because I don't have a food processor handy here, I have to tip the packet of extremely greasy powder into half a bottle of water and do a cocktail mix as best I can; I generally don't have too much left over in lumps, but certainly the consistency of the powder really needs some work before they commercialise this product!
Decide to write this up - offline initially, to save my precious online time! (I'm on a key, buy hours up front - I managed to use 6 out of 8 hours yesterday!!). It is now 10.16. Amazing, where did my morning go???
February 5, 2010
As Kat said... Nearly there!
Hi, all, first post for a while, sorry. As Kat just mailed me (and I've nabbed a lump out of my reply to her to save typing lol), really nearly there - next week is my last week of radiation therapy, and Thursday I have my last 3 days chemo.
I've been not too good since my last chemo, and have actually spent this week in hospital, because my nutrition had basically stopped and I was constantly nauseous. It's NICE being looked after!! Someone is going to come and wash my back in a while, and then they are going to wash my hair (can't shower due to the usual paraphernalia of tubes attached lol). They have got me back on track-ish now, I am on 24 hour non-stop goo at a very very slow rate (40ml/hour); and I only occasionally need anti-sick stuff, usually at about 4.30 a.m., at least it gives the night nurse something to do
. I need to get them to weigh me today, I lost 2kg last week, and I will have lost more this week I'm sure, I've only been managing about 850 cals a day tops. This means that I am eating into muscle, rather than fat, because that's what the body does when it is using its own resources, sounds pretty stupid to me but no doubt there are good reasons. However, it is not at all desirable, and takes a long time to get back even a small loss, so they are really keen for me to stay until they feel I'm 'sorted'.
I think I probably am now, had a few sessions with a psychologist, too, and had my breakthrough as being 'I need to have the right to be weak'. Because it's hard, all this positive thinking malarky. Be strong, keep your chin up, must fight it, blah blah... there is quite a keen debate going on amongst cancer sufferers about the bad side of positive thinking, which implies that if you are ill, if you don't beat the cancer, then it is your fault. I didn't feel like that at all at first, but I must admit I do now. You can't be positive all the time, you can't put on a brave face all the time, or you end up doing what I did - the day before I was hospitalised, I got all dressed up and looked 'splendid', a friend said, I did some gardening, and went for a nice long walk (about an hour??) with my friends, in the lovely sun. No-one had any idea things were not hunky-dory. But I knew they weren't. And the next day, the doctor and the nutritionist both recommended I go home, pack a bag, and come straight back for a stay, so I did.
Ugh. English Breakfast tea, no milk, made with luke warm water. Oh well. At least I can swallow it.
I've been not too good since my last chemo, and have actually spent this week in hospital, because my nutrition had basically stopped and I was constantly nauseous. It's NICE being looked after!! Someone is going to come and wash my back in a while, and then they are going to wash my hair (can't shower due to the usual paraphernalia of tubes attached lol). They have got me back on track-ish now, I am on 24 hour non-stop goo at a very very slow rate (40ml/hour); and I only occasionally need anti-sick stuff, usually at about 4.30 a.m., at least it gives the night nurse something to do
. I need to get them to weigh me today, I lost 2kg last week, and I will have lost more this week I'm sure, I've only been managing about 850 cals a day tops. This means that I am eating into muscle, rather than fat, because that's what the body does when it is using its own resources, sounds pretty stupid to me but no doubt there are good reasons. However, it is not at all desirable, and takes a long time to get back even a small loss, so they are really keen for me to stay until they feel I'm 'sorted'.I think I probably am now, had a few sessions with a psychologist, too, and had my breakthrough as being 'I need to have the right to be weak'. Because it's hard, all this positive thinking malarky. Be strong, keep your chin up, must fight it, blah blah... there is quite a keen debate going on amongst cancer sufferers about the bad side of positive thinking, which implies that if you are ill, if you don't beat the cancer, then it is your fault. I didn't feel like that at all at first, but I must admit I do now. You can't be positive all the time, you can't put on a brave face all the time, or you end up doing what I did - the day before I was hospitalised, I got all dressed up and looked 'splendid', a friend said, I did some gardening, and went for a nice long walk (about an hour??) with my friends, in the lovely sun. No-one had any idea things were not hunky-dory. But I knew they weren't. And the next day, the doctor and the nutritionist both recommended I go home, pack a bag, and come straight back for a stay, so I did.
Ugh. English Breakfast tea, no milk, made with luke warm water. Oh well. At least I can swallow it.
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