Christmas was nice, I was really feeling pretty energetic and much more myself by that week, we had friends round on the 23rd, made it as easy as poss using frozen canapés and stuff, there was 8 of us in all, it was a lovely evening washed down entirely with champagne. Then Russ and Pat and Pa came down on the 27th, which was a similar sort of meal plus soup, and it was great to see them, and great for them to see me on good form. Ma sadly couldn't make it because she had a cold and felt crappy, plus it was important I didn't catch it. On the 24th we had a dinner just me, Lionel and David his son; L had cooked a duckling (I guess - canette) plus purée and green beans, the duckling was cooked in its juices with mixed wild mushrooms and it was lovely BUT - I couldn't eat it; and the purée was too dry for me too; and I ended up chocking and having to spit a mouthful out and felt really bad for L who'd made the effort...
But, well, he also didn't make the effort to add the requisite things to the purée for me, or to do anything about it when I had those probs. In fact, I'm really pissed off with him at the moment. We had a massive row a while back, I was saying I needed more support like cuddles and understanding, and, well, I sure as hell didn't get it. He accused me of refusing to stop being ill - I can't remember the exact words, but I actually think I'm doing a brilliant job of coping, and he's not. But he refuses point blank to see a psychologist or any other form of support.
So Monday, started the chemo and the radiotherapy. Most of the chemo was having a large quantity of water dripped into me, and peeing in containers to make sure a large quantity was also coming out. The chemo itself only took 2 hours. The radio doesn't take long, 5 or 10 mins - and they've moved the appointment from 7 pm to 3pm which is much better. While still in hospital they also added plenty of other stuff into the drips to control nausea, which obviously worked because I really felt fine, apart from I had a totally splitting headache, and over-sensitivity to light, which the nurse reckoned was probably because of the quantity of liquid they were shoving in me (3 litres/24 hours). I have to stay at 2 litres a day (although it can be soup, tea, anything, not necessarily just water), and work myself back up to 3 litres a day a couple of days before the next chemo session.
Back home Wednesday, feeling a bit tired, went to bed at about 6 for a rest, woke up at about 8.30 had some soup, couldn't face anything else, took anti-sick pills L had gone to get for me (such an impressive array of things to take I had to write myself out a special schedule). This managed to cause a row, because I knew exactly which pills I needed to take, and he refused to listen and read the papers and told me which ones - wrongly. I had to go and get my schedule and show it to him to make him listen. I mean, the ones he wanted me to take were anti-nausea, yes, but for the first 3 days I had these special extra-anti-nausea ones, which even had their own special prescription with extra copies that had to be sent to various places.
So I got my pills, and went to sleep again. L came to bed at about 1, I was vaguely aware; I woke up at about 3 to go to the loo/mouth wash (have to do lots and lots of mouth washes with a foul mixture of bicarb of soda, aspirine and some nasty pink stuff - 7 to 10 times a day) - thought I wouldn't get back to sleep again (had a bit of a battle with L's snoring), but in fact slept right on until 10.30!
Wasn't feeling good, and needed some other pills for the morning - discovered that I had only been given one box of 2 pills of the special doobries, the others needed collecting today. I talked to L about it, that he'd need to get them for me. I was not up to driving or walking anywhere. He went to town at about 2, I got ready for the taxi for the radio therapy, he came and found me at the hospital, and we taxi'd home together. I was feeling really crappy and my neck/tongue are already starting to hurt from the radio treatment, so went straight back to bed. So far had managed only to consume a hot chocolate, a caramel desert thing, and an HP drink. Plus put myself on some water drip in the morning, but again only managed about 200ml. So I put myself on a food drip, nice and slow, but had to stop it after 200ml, felt too sick. Slept. Woke about 6.30 still feeling really nauseous and decided to take my evening pills... but L hadn't been to the chemist's. And it is new year's eve - everything closes at 5, and will stay firmly closed tomorrow. Since I only had 3 day's worth of these pills, it hardly seems worth getting them on Saturday. Luckily I do have the other anti-nausea pills to take, but they are not so strong. Anyway - I'm really really pissed off with L, he doesn't have to think about much for me, I manage almost everything for myself, and this was important.
Also, domestic help: we agreed months ago that we would need some and he decided he wanted to use the service provided by his insurance company. After yet another altercation, he finally put the online request in today. Who knows when it may start. Plus it's really expensive - I should probably talk to the social services and see if I can't get some cheaper assistance from them.
So I'm pissed off with him. and I doubt very much I'll be awake for midnight.
December 31, 2009
December 16, 2009
Christmas and all that jazz
Many thanks to Lins for her long and thought provoking post. As far as her suggestions about sitting around on mountains or on squares go... I feel she may have forgotten what 'cold' means!!! But I do like her idea of thinking now about next year; although I'm not sure I can do it. I'm pretty much one day at a time at the moment, I feel in limbo just waiting for the radio therapy and chemo to start. But I don't approve of the total non-Christmas-ness I feel - I have not been shopping at all, and hell I miss charity shops! My UK habit was to be buying things I saw throughout the year, there was always interesting/fun/silly stuff around - the French shopping world is less full of it and almost entirely lacking charity/second hand shops. Although, there is a big boot sale near here every Sunday morning - still one weekend to go. I havn't seen anything that made me go 'oh, I just HAVE to buy that for x' when we've been, but I think I've also been very self-centered; and being with Lionel cramps my style rather, he likes New and can't understand why I like all this dirty old stuff, especially the weird things I tend to be attracted by. But at least it does mean I am not filling this place up even more with useless Stuff, because I am very gifted at that.
Anyway - I'm rambling rather this evening - I'm rambling rather all together, actually, I have very low concentration and my memory seems to have stopped. All part of my limbo, I think - a blankness in the brain linked to non-planning. This is not depression, although there is of course an element of fear in it - everyone has been so careful to tell me that the radiotherapy is really going to hurt and just exactly what the side-effects of the chemo are going to be. So - hell, surely I should be taking advantage of this festive season, especially since I'm eating so much better now (boudin blanc and rosti last night), also seeing my family and enjoying them while I'm feeling good. That is far more important than buying bloody presents, or even sending cards, although I really do want to do that, because I want to thank people for all the good wishes - small problem of a) having lost my address book (cat AStrophe!!) and b) knowing that various people have moved, and I know I don't have their new address - it feels complicated, so I'm dodging it. Can't dodge it for too long, or I'll be too late.
Lins however has quite rightly pointed out that when I go to my folks, I normally look after them, and I won't be able to, which will frustrate me; and they won't be able to look after me, which will frustrate them; and we'll still both try to look after eachother and get worried and cross with eachother for doing it... and Russ and Pat may end up looking after all of us, which would be totally unfair; especially as, even if I'm doing really well, I still have some food preparation specialist requirements, which at Christmas would have to be a pain.
So - resolution - tomorrow is my shopping day - oh. Rats - it is also Wednesday, so L only works in the morning, and therefore I will be taking him into town in the afternoon, and we will be shopping together. Now that has its assets - he can carry stuff :D - but again, his tastes are so different, and he also relies on me to choose purchases for his family. So - resolution - Thursday I will go out on my own and shop. Buy hideous French greetings cards (why can't they do nice ones??) and stamps, and try to find some pressies for close family. I'd really like to buy Lionel something nice, but he has expensive tastes - I mean what he really wants is a bloody great HD TV, 22" or something equally awful - but even if we pay 50/50 we can't afford it, which frankly is a relief. The other thing he has always really wanted is a good StarWars light wand... do you realise they are about 150€??? Really! that is ridiculous.
Oh - and it has to be a cheap Christmas too - that 1200€ for the dentist, I'm not getting back. Having also paid out 1000€ for some work on my house for that month, plus normal out goings like car payment etc., even though I was in hospital I went so over drawn that I was 'interdit bancaire' (this means you are not allowed to write cheques that have no funds to pay them) and had a cheque bounce while I was in hospital - so this month's salary was largely noshed before I started... this sort of economic problem has not happened to me for so many years! Charity shops, where are youuuuuuuuuu.
I am tempted by the electronic card solution - but it is just not so good, is it?
Anyway - I'm rambling rather this evening - I'm rambling rather all together, actually, I have very low concentration and my memory seems to have stopped. All part of my limbo, I think - a blankness in the brain linked to non-planning. This is not depression, although there is of course an element of fear in it - everyone has been so careful to tell me that the radiotherapy is really going to hurt and just exactly what the side-effects of the chemo are going to be. So - hell, surely I should be taking advantage of this festive season, especially since I'm eating so much better now (boudin blanc and rosti last night), also seeing my family and enjoying them while I'm feeling good. That is far more important than buying bloody presents, or even sending cards, although I really do want to do that, because I want to thank people for all the good wishes - small problem of a) having lost my address book (cat AStrophe!!) and b) knowing that various people have moved, and I know I don't have their new address - it feels complicated, so I'm dodging it. Can't dodge it for too long, or I'll be too late.
Lins however has quite rightly pointed out that when I go to my folks, I normally look after them, and I won't be able to, which will frustrate me; and they won't be able to look after me, which will frustrate them; and we'll still both try to look after eachother and get worried and cross with eachother for doing it... and Russ and Pat may end up looking after all of us, which would be totally unfair; especially as, even if I'm doing really well, I still have some food preparation specialist requirements, which at Christmas would have to be a pain.
So - resolution - tomorrow is my shopping day - oh. Rats - it is also Wednesday, so L only works in the morning, and therefore I will be taking him into town in the afternoon, and we will be shopping together. Now that has its assets - he can carry stuff :D - but again, his tastes are so different, and he also relies on me to choose purchases for his family. So - resolution - Thursday I will go out on my own and shop. Buy hideous French greetings cards (why can't they do nice ones??) and stamps, and try to find some pressies for close family. I'd really like to buy Lionel something nice, but he has expensive tastes - I mean what he really wants is a bloody great HD TV, 22" or something equally awful - but even if we pay 50/50 we can't afford it, which frankly is a relief. The other thing he has always really wanted is a good StarWars light wand... do you realise they are about 150€??? Really! that is ridiculous.
Oh - and it has to be a cheap Christmas too - that 1200€ for the dentist, I'm not getting back. Having also paid out 1000€ for some work on my house for that month, plus normal out goings like car payment etc., even though I was in hospital I went so over drawn that I was 'interdit bancaire' (this means you are not allowed to write cheques that have no funds to pay them) and had a cheque bounce while I was in hospital - so this month's salary was largely noshed before I started... this sort of economic problem has not happened to me for so many years! Charity shops, where are youuuuuuuuuu.
I am tempted by the electronic card solution - but it is just not so good, is it?
December 7, 2009
Stitches and scars
It's good and bad... had the remaining stitches taken out of my neck and wrist. The wrist stitches took a long time and are probably not complete - because apparently they had been left in too long and the skin has grown over them in places. They reckon the strange round seeping blob on the wrist is due to an allergy to the stitches - you could see there were stitches specifically around that area, not sure what the area itself is still, though; there are other little allergic reactions happening all round the edges, so this sounds quite likely. She removed all she could, but she said the body now just has to cope with it, and various bits of thread will probably just pop up from time to time and I should cut it off or pull it out. Eeesh.
Stitches left in too long - so who's bloody fault is that? There were no instructions left on the subject and when I was in hospital no-one seemed to know if these particular stitches needed to be removed or if they would be absorbed. I'm pissed off about that.
The scars from the major neck surgery are truly minimal. The worst of it is actually just dirt!!! so now the stitches are out and the scabs are off, I need to tend to getting rid of the nasty black line, yuk yuk, gentle soaping every day.
It's the tracheotomy that's the issue - a deep scar somewhat hidden by an overlapping pocket of skin, and it pulls when I swallow. I in fact find it much less comfortable without the dressing - or without putting my fingers on it, for when I swallow - havn't coughed or sneezed yet but I suspect the same will hold true. Frankly if they were able just to sew the upper bit to the lower bit and the two fused nicely, it feels like it would solve the problem! I know there are various plastic surgery techniques available to fix this issue.
Under my chin it is still all hard and swollen and I'm hoping that this is not going to mean I have a permanent 'sewn in' double chin that stays even if I lose weight! but certainly, it's going to take a considerable time to heal - I really need to track its progress over a year or more. My wrist is not a pretty sight either.
Oh well, oh well - I'm alive, aren't I!
Apparently because I'm on sick leave I'm not allowed to leave the department - what should I do about Christmas !?
Stitches left in too long - so who's bloody fault is that? There were no instructions left on the subject and when I was in hospital no-one seemed to know if these particular stitches needed to be removed or if they would be absorbed. I'm pissed off about that.
The scars from the major neck surgery are truly minimal. The worst of it is actually just dirt!!! so now the stitches are out and the scabs are off, I need to tend to getting rid of the nasty black line, yuk yuk, gentle soaping every day.
It's the tracheotomy that's the issue - a deep scar somewhat hidden by an overlapping pocket of skin, and it pulls when I swallow. I in fact find it much less comfortable without the dressing - or without putting my fingers on it, for when I swallow - havn't coughed or sneezed yet but I suspect the same will hold true. Frankly if they were able just to sew the upper bit to the lower bit and the two fused nicely, it feels like it would solve the problem! I know there are various plastic surgery techniques available to fix this issue.
Under my chin it is still all hard and swollen and I'm hoping that this is not going to mean I have a permanent 'sewn in' double chin that stays even if I lose weight! but certainly, it's going to take a considerable time to heal - I really need to track its progress over a year or more. My wrist is not a pretty sight either.
Oh well, oh well - I'm alive, aren't I!
Apparently because I'm on sick leave I'm not allowed to leave the department - what should I do about Christmas !?
December 6, 2009
Such progress!
The visit to the nutrition dept at the hospital was really useful. Lots of tips and ideas for beefing food up whilst still being able to eat it - got a prescription for high protein drinks/desserts and some protein powder, that has no taste (so they say...) - so can add it to soup or purée or whatever; also to use full fat milk, and add fromage frais or cream to soups etc., and cubes of ham etc. And eggs - they are really useful of course! Also signed up to a phase 3 product experiment - not product exactly - food supplements that are believed to assist in protecting the mouth/gums during radio therapy and prevent the sores etc. As a test subject, of course I don't know if I get the product or the placebo, but I'm happy to take part.
Anyway - I also decided to start using the mouthwash the dentist had given me, instead of the normal chemist-available stuff, and use a softer toothbrush, because I've been starting to get sore gums - this is purely because they are softening up from lack of use. I do not want to start the zapping with gums already sore! It may be co-incidence, but I have suddenly made some great strides forward on the eating front.
Yesterday morning when I woke up I drank some water and realised I could swallow almost normally - let's say 90% normally. We had to do the normal domestic stuff and went shopping (we also have to shop for Lionel's sister), then had to go into town to pick up L's dry cleaning, I was getting really exhausted and had had a crying spat after the supermarket - sheer tiredness - partly because I hadn't yet eaten all day. I don't do breakfast (hot choc) and we'd gone out at lunch time; so we went to a Flunch, and I managed half a portion of poached salmon, a spoonful of ratatouille to wash it down, and a bit of spinach; plus a tiny fresh goat's cheese with just the soft bit of the bread; and a tiny bit of dessert. I couldn't manage any more, it was really hurting my neck, but I was very pleased with myself. Still only chewing on the left, though. In the evening I had Savoyard soup (potato and cheese) with extra cream in.
This morning, I realised that the last stitch in my mouth has gone - right back near my lower right wisdom tooth - and that that area of my mouth (which has been the most sensitive up to now) was getting much better; so I decided to attempt a bit of chewing on that side. Well, maybe 'chewing' is an exaggeration, it was after all only mashed banana in yoghurt - but just dealing with food on the right hand side of my mouth was a big step forward, and actually really scarey; because of course my tongue is partially numb, I can't really feel what's going on, and so guiding food correctly is difficult. Anyway - I'm sorry I go into so much detail about this stuff which is probably a) totally disgusting and b) completely boring - but it does me good, and I AM proud of myself. Because, having managed the banana yoghurt ok, this afternoon I ate 2 (small) slices of bread, one with Boursin one with honey (and both with butter) - and I chewed some of the non-crusty bits on the right hand side. That is SO good!
I have to keep a close eye on my enthusiasm - my weight is stable, at 67.4kg. So I remain 4kg down on my original over-weightness; but however enthusiastic I may feel about my ability to eat improving, I'm not exactly eating a normal quantity - small amounts seem so huge! So well, I will have to be good and keep up the supplements and the goo, although I'm not gooing every day.
AND today I took a shower - with Lionel's help, I couldn't manage on my own, since I can't get my left forearm wet at all; I didn't mind getting the tummy or the throat dressings wet, both of them will be open to the air soon, and the nurse was due soon. It felt so GOOD - unless you havn't been able to shower but only to wash standing up with minimal moisture for several weeks, you really can't appreciate how wonderful it feels... just to have the water flowing over you.
I'm so happy!
Anyway - I also decided to start using the mouthwash the dentist had given me, instead of the normal chemist-available stuff, and use a softer toothbrush, because I've been starting to get sore gums - this is purely because they are softening up from lack of use. I do not want to start the zapping with gums already sore! It may be co-incidence, but I have suddenly made some great strides forward on the eating front.
Yesterday morning when I woke up I drank some water and realised I could swallow almost normally - let's say 90% normally. We had to do the normal domestic stuff and went shopping (we also have to shop for Lionel's sister), then had to go into town to pick up L's dry cleaning, I was getting really exhausted and had had a crying spat after the supermarket - sheer tiredness - partly because I hadn't yet eaten all day. I don't do breakfast (hot choc) and we'd gone out at lunch time; so we went to a Flunch, and I managed half a portion of poached salmon, a spoonful of ratatouille to wash it down, and a bit of spinach; plus a tiny fresh goat's cheese with just the soft bit of the bread; and a tiny bit of dessert. I couldn't manage any more, it was really hurting my neck, but I was very pleased with myself. Still only chewing on the left, though. In the evening I had Savoyard soup (potato and cheese) with extra cream in.
This morning, I realised that the last stitch in my mouth has gone - right back near my lower right wisdom tooth - and that that area of my mouth (which has been the most sensitive up to now) was getting much better; so I decided to attempt a bit of chewing on that side. Well, maybe 'chewing' is an exaggeration, it was after all only mashed banana in yoghurt - but just dealing with food on the right hand side of my mouth was a big step forward, and actually really scarey; because of course my tongue is partially numb, I can't really feel what's going on, and so guiding food correctly is difficult. Anyway - I'm sorry I go into so much detail about this stuff which is probably a) totally disgusting and b) completely boring - but it does me good, and I AM proud of myself. Because, having managed the banana yoghurt ok, this afternoon I ate 2 (small) slices of bread, one with Boursin one with honey (and both with butter) - and I chewed some of the non-crusty bits on the right hand side. That is SO good!
I have to keep a close eye on my enthusiasm - my weight is stable, at 67.4kg. So I remain 4kg down on my original over-weightness; but however enthusiastic I may feel about my ability to eat improving, I'm not exactly eating a normal quantity - small amounts seem so huge! So well, I will have to be good and keep up the supplements and the goo, although I'm not gooing every day.
AND today I took a shower - with Lionel's help, I couldn't manage on my own, since I can't get my left forearm wet at all; I didn't mind getting the tummy or the throat dressings wet, both of them will be open to the air soon, and the nurse was due soon. It felt so GOOD - unless you havn't been able to shower but only to wash standing up with minimal moisture for several weeks, you really can't appreciate how wonderful it feels... just to have the water flowing over you.
I'm so happy!
December 3, 2009
My busy schedule...
Well OK it's not that busy, but it is just starting to hot up a bit, prepping for the radiotherapy. Today I had some sort of cardio scan - they inject you with a couple of products at half hour intervals then you lie in a machine without moving for 10 minutes. This is because the chemio can affect one's heart, apparently, so they do before and after tests; if they see anything wrong happening I assume they react accordingly.
10 minutes is actually quite a long time not to move at all, especially as there was nothing to rest one's left arm/elbow on - I had my thumb tucked in a belt loop on my trousies, and just had to sort of hold it still... this got very wearing!
Tomorrow I meet the gastro-nutrition team in the radiotherapy department. That'll be good.
Monday, I'm seeing my surgeon again, they brought the appointment forward because my lovely nurse is not happy about a strange round blob that continues to grow, on my graft donor place on my wrist. This spot has always been different, initially it was a sort of hole in the skin, now it is rather weird, 3 nurses have looked at it and said 'don't know what that is', so I'm very pleased to be going to see my future husband tomorrow.
Can't say the courtship is advancing well otherwise, though.
On the 8th I have 2 appointments, one with a Dr who I have no idea what he is or why, then with the hospital dentist - they again wish to be sure I have good mouth and dental hygiene before I start getting zapped. And on the 10th, I have my simulation scan and mask fitting.
That's the end of the flurry of activity until the 28th (unless they decide they need to do something about my wrist). On the 28th, I go in for my first treatment, which is chemo and radio. I'll be in for 3 days. This is so they can do a pre-treatment urine quantity/quality check, and a post-treatment comparison, because apparently the chemo can damage the kidneys.
I'm very glad I'm only getting 2 lots of this chemo considering the possible side-effects! I mean, do I really want to be cured of cancer (because I'm sure the treatment will be successful), but left with a heart and kidney condition? really!
But you don't lose your hair, so that's ok.
I calculate that the treatment ends after the 1st week of February. I guess there will then be post-treatment tests, scans, etc, to see how it's done. I then have a month to recuperate, and then I should be back to work! Trying to decide if that makes me feel enthusiastic or not ;)
10 minutes is actually quite a long time not to move at all, especially as there was nothing to rest one's left arm/elbow on - I had my thumb tucked in a belt loop on my trousies, and just had to sort of hold it still... this got very wearing!
Tomorrow I meet the gastro-nutrition team in the radiotherapy department. That'll be good.
Monday, I'm seeing my surgeon again, they brought the appointment forward because my lovely nurse is not happy about a strange round blob that continues to grow, on my graft donor place on my wrist. This spot has always been different, initially it was a sort of hole in the skin, now it is rather weird, 3 nurses have looked at it and said 'don't know what that is', so I'm very pleased to be going to see my future husband tomorrow.
Can't say the courtship is advancing well otherwise, though.
On the 8th I have 2 appointments, one with a Dr who I have no idea what he is or why, then with the hospital dentist - they again wish to be sure I have good mouth and dental hygiene before I start getting zapped. And on the 10th, I have my simulation scan and mask fitting.
That's the end of the flurry of activity until the 28th (unless they decide they need to do something about my wrist). On the 28th, I go in for my first treatment, which is chemo and radio. I'll be in for 3 days. This is so they can do a pre-treatment urine quantity/quality check, and a post-treatment comparison, because apparently the chemo can damage the kidneys.
I'm very glad I'm only getting 2 lots of this chemo considering the possible side-effects! I mean, do I really want to be cured of cancer (because I'm sure the treatment will be successful), but left with a heart and kidney condition? really!
But you don't lose your hair, so that's ok.
I calculate that the treatment ends after the 1st week of February. I guess there will then be post-treatment tests, scans, etc, to see how it's done. I then have a month to recuperate, and then I should be back to work! Trying to decide if that makes me feel enthusiastic or not ;)
Answers to questions
Rachel left a comment with loads more questions in, so here goes on answering it all! Rachel's comments in italics.
It is all rather complicated. Think I would find it bewildering and overwhelming.
You get the hang of it! The goo machine is easy-peasy, dealing with the tube is easy too, you just have to remember to block/unblock it, which is the bit I do still tend to forget at intervals... but I have far fewer disastrous gooey moments lol.
Is drinking with a straw a bit easier than eating? Or does that have challenges too?
I just tried this for the first time today, as it happens, for a high calorie drink. Took a bit of getting used to, have to be careful I aim the straw in the right direction - or rather, the left direction! - so the liquid doesn't hit any sensitive/non-swallowing bits, but I've got the hang of it now. I don't think there's any comparison better/worse really.
Mmm set custard would slip down nicely, plenty of calories too. How about cold consomme?
Set custard mmmmmmmmmm - all that sort of thing yesssssssssss. Although Bird's custard (which is the only real custard) has never been the same since they took the no doubt highly carcinogenic yellow colouring out of it! and I'm sure they must have removed some flavourings at the same time. I've never been one for consommé, but it would be good for me... I'll have to think about it.
Today I managed to eat almost a whole slice of bread - well, by English loaf standards, actually, probably less than half a slice - but I can manage it, in very very small pieces, with generous butter to help it slip down, and I also had tuna rillettes on it. Can't translate rillettes, but it's a sort of tuna paté but a bit coarser. My decision tonight is scrambled eggs with smoked trout (havn't got any smoked salmon hanging around). Doesn't mean I'll necessarily eat that tonight... I think I'll be soup and bread, but a hearty potato and cheese soup yummy... must appreciate it all while I still have my taste buds.
I'm working on making myself take more in orally (calm down boys - I also have the problem that I really can't open my mouth very far) - but using the syringe less for liquids, and trying to eat rather than goo. However, I think I'm not taking in enough calories at all. Well, I know I'm not... so I still have to make myself goo. But if I don't goo during the day, then it's no fun for poor Lionel, who understandably likes to eat in company.
The windows sound an improvement, shame they did not get put in before you came home from hospital! Anything like that makes a huge mess and needs lots of cleaning which is probably a bit too much for you right now.
You are so right the windows really help to get the place warm which was being a problem, but I can't deal with housework, just doing any small thing exhausts me. But yippee today we agreed with the lady who does the flat upstairs that she will come to us 3 hours a week at least for the next few weeks (then she wants to reduce her working hours to revise for her degree). Since the flat upstairs is spotless, I have high hops - although the flat upstairs is also organised and doesn't have STUFF all over the place, which we do. We shall see!!
Goodness, all that paperasse to deal with! What a pain and peculiarly french. Presumably you need to sort it out fairly immediately. Does your GP get involved now to prescribe the other things you need? It does sound a worry that you don't have everything you need.
Yes it really is a pain in the arse and wildly French. I got to see my GP - she had to fit me in in the evening, you know these people work SUCH long hours, the doctors, the nurses, they all look completely exhausted! - she re wrote the sick note for me for 2010 which was a relief, and was also perplexed that I had had no prescriptions from the hospital, she did the necessary.
Rather unusual for a french doctor to underprescribe. Can you get Gaviscon, for the reflux, from the chemist?
Yes it is isn't it? although I guess there's a difference between underprescribe and just... not! you can get Gavison and I have some, although have to say have not found it wildly effective, but now also have the single daily tablet. Have worked out I can shake the contents of the capsule into a bit of yoghurt and eat it that way (it is quite sweet and crunchy), it didn't disolve well. I certainly can't cope with swallowing actual pills yet.
There! Rachel all catered for!
It is all rather complicated. Think I would find it bewildering and overwhelming.
You get the hang of it! The goo machine is easy-peasy, dealing with the tube is easy too, you just have to remember to block/unblock it, which is the bit I do still tend to forget at intervals... but I have far fewer disastrous gooey moments lol.
Is drinking with a straw a bit easier than eating? Or does that have challenges too?
I just tried this for the first time today, as it happens, for a high calorie drink. Took a bit of getting used to, have to be careful I aim the straw in the right direction - or rather, the left direction! - so the liquid doesn't hit any sensitive/non-swallowing bits, but I've got the hang of it now. I don't think there's any comparison better/worse really.
Mmm set custard would slip down nicely, plenty of calories too. How about cold consomme?
Set custard mmmmmmmmmm - all that sort of thing yesssssssssss. Although Bird's custard (which is the only real custard) has never been the same since they took the no doubt highly carcinogenic yellow colouring out of it! and I'm sure they must have removed some flavourings at the same time. I've never been one for consommé, but it would be good for me... I'll have to think about it.
Today I managed to eat almost a whole slice of bread - well, by English loaf standards, actually, probably less than half a slice - but I can manage it, in very very small pieces, with generous butter to help it slip down, and I also had tuna rillettes on it. Can't translate rillettes, but it's a sort of tuna paté but a bit coarser. My decision tonight is scrambled eggs with smoked trout (havn't got any smoked salmon hanging around). Doesn't mean I'll necessarily eat that tonight... I think I'll be soup and bread, but a hearty potato and cheese soup yummy... must appreciate it all while I still have my taste buds.
I'm working on making myself take more in orally (calm down boys - I also have the problem that I really can't open my mouth very far) - but using the syringe less for liquids, and trying to eat rather than goo. However, I think I'm not taking in enough calories at all. Well, I know I'm not... so I still have to make myself goo. But if I don't goo during the day, then it's no fun for poor Lionel, who understandably likes to eat in company.
The windows sound an improvement, shame they did not get put in before you came home from hospital! Anything like that makes a huge mess and needs lots of cleaning which is probably a bit too much for you right now.
You are so right the windows really help to get the place warm which was being a problem, but I can't deal with housework, just doing any small thing exhausts me. But yippee today we agreed with the lady who does the flat upstairs that she will come to us 3 hours a week at least for the next few weeks (then she wants to reduce her working hours to revise for her degree). Since the flat upstairs is spotless, I have high hops - although the flat upstairs is also organised and doesn't have STUFF all over the place, which we do. We shall see!!
Goodness, all that paperasse to deal with! What a pain and peculiarly french. Presumably you need to sort it out fairly immediately. Does your GP get involved now to prescribe the other things you need? It does sound a worry that you don't have everything you need.
Yes it really is a pain in the arse and wildly French. I got to see my GP - she had to fit me in in the evening, you know these people work SUCH long hours, the doctors, the nurses, they all look completely exhausted! - she re wrote the sick note for me for 2010 which was a relief, and was also perplexed that I had had no prescriptions from the hospital, she did the necessary.
Rather unusual for a french doctor to underprescribe. Can you get Gaviscon, for the reflux, from the chemist?
Yes it is isn't it? although I guess there's a difference between underprescribe and just... not! you can get Gavison and I have some, although have to say have not found it wildly effective, but now also have the single daily tablet. Have worked out I can shake the contents of the capsule into a bit of yoghurt and eat it that way (it is quite sweet and crunchy), it didn't disolve well. I certainly can't cope with swallowing actual pills yet.
There! Rachel all catered for!
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