Dear All
I am now at home with the radiation and chemo-therapy finished at last (finished two weeks ago). What has still not finished is the side effects from those two therapies. The theory was that I would be in hospital just for the first week of the 5 week treatment (the week with the chemo) and then would complete the therapy as an out patient. In reality the ulcers, sore and general nastiness that affected my mouth meant that I couldn't eat or drink and I got in a really bad state after my first week at home and so I returned to hospital for another 4 weeks or so to be on a drip feed and to also get imbalances in my blood sorted out
I'm still on the feed, though at home. My mouth is starting to heal and I think I will able to eat normally in a week or so. Should all go well then they will operate to remove the site of tumour on 4th December.
I said the site of the tumour because while the therapies did collateral damage, they also succeeded magnificently in disappearing the tumour! I am a 'good responder' apparently.
I still can't talk properly or at least not for long, but can get out and about and am generally in good spirits. Am not driving yet but living in Vienna this is not a big problem! Am planning getting back to work with my camera soon — my daily photo site had a full month's lack of addition but is starting up again though it is as yet just with photos taken before I was in hospital — am plotting how to afford a new (and expensive) camera as my Xmas present to myself so you can see I am definitely on the way to recovery
Many thanks for your good wishes
David
Sunday, 28 October 2007
Sunday, 21 October 2007
2007-10-21 — Newsletter
Dear All,
I got home on Thursday. To be honest I was a little dreading that — firstly the leaving of the security of the hospital seemed a bit scary (rather like the problem long-term prisoners have on being released) and secondly the actual getting home (I still feel quite weak) seemed an enormous task. Chris was a tower of strength for me in the second thing. Carried all the heavy stuff, was extremely solicitous and I felt really 'taken care' of. I am very, very lucky to have two children (young confident adults actually) who are such a support to me. Margaret had got my shopping in for me and so things went really well
It is a little more difficult being at home — the feeding through the tube takes time where I have to be stuck in one place (surrounded by phones, remotes, water, tissues all of which must be in reach for the nearly 2 hours it takes to get a bag of feed dripped) and so I have plan other things much more carefully — and there are more things to do than in hospital — pay bills, etc — thank God for the Internet!
My mouth is still the pits. Ulcers and sores still come and go. Nights are unpleasant — very broken with an hour sleep at a time usually the longest period I get.
But the good news — there is a delay in the side effects of the radiation and this should be coming to an end around the end of the week so things should get better soonish. Once I can eat normally — even if it is soup and mush at first the it all improves. And on the tumour side — at the last consultation the radiation doctor said it had gone. I asked "completely?" and she said she could prod around to confirm but that would be very painful so we decided to give with the visual result — the area will be removed by surgery anyway.
I am impatient, uncomfortable but optimistic and the light at the end of the tunnel cannot be far.
Of so much importance to me has been your prayers, well wishes, hospital visits, emails, phone calls which have been of great help to me — many, many thanks
I finish with a note of advice — If you have to spend time in an Austrian hospital bring a supply of soft toilet paper — the local issue tissue will wipe the smile of your face otherwise
love and best wishes
David
I got home on Thursday. To be honest I was a little dreading that — firstly the leaving of the security of the hospital seemed a bit scary (rather like the problem long-term prisoners have on being released) and secondly the actual getting home (I still feel quite weak) seemed an enormous task. Chris was a tower of strength for me in the second thing. Carried all the heavy stuff, was extremely solicitous and I felt really 'taken care' of. I am very, very lucky to have two children (young confident adults actually) who are such a support to me. Margaret had got my shopping in for me and so things went really well
It is a little more difficult being at home — the feeding through the tube takes time where I have to be stuck in one place (surrounded by phones, remotes, water, tissues all of which must be in reach for the nearly 2 hours it takes to get a bag of feed dripped) and so I have plan other things much more carefully — and there are more things to do than in hospital — pay bills, etc — thank God for the Internet!
My mouth is still the pits. Ulcers and sores still come and go. Nights are unpleasant — very broken with an hour sleep at a time usually the longest period I get.
But the good news — there is a delay in the side effects of the radiation and this should be coming to an end around the end of the week so things should get better soonish. Once I can eat normally — even if it is soup and mush at first the it all improves. And on the tumour side — at the last consultation the radiation doctor said it had gone. I asked "completely?" and she said she could prod around to confirm but that would be very painful so we decided to give with the visual result — the area will be removed by surgery anyway.
I am impatient, uncomfortable but optimistic and the light at the end of the tunnel cannot be far.
Of so much importance to me has been your prayers, well wishes, hospital visits, emails, phone calls which have been of great help to me — many, many thanks
I finish with a note of advice — If you have to spend time in an Austrian hospital bring a supply of soft toilet paper — the local issue tissue will wipe the smile of your face otherwise
love and best wishes
David
Thursday, 18 October 2007
2007-10-18 – Calendar entry – Back home
Well, at last, I'm home. Chris took time off work and came in the taxi with me. Needed help to carry the case, laptop and all the stuff I'd gathered over the last few weeks. He was a tower of strength.
From now until the operation I remain with the tube down my nose and 'feeding' off bags of 'food' which I get from the chemist. I setup a clamp on a bookshelf, moved an armchair near to it and settle myself three times a day for a slow leisurely 'meal'. I have to try to remember to bring phones and everything I might need and put them within reach as unlike the hospital where the bag was held in a stand on wheels, here at home it is more fixed.
Saturday, 13 October 2007
2007-10-13 — Newsletter
Dear All,
Well radiation is over — the last session was yesterday. Of course then last night a new crop of assorted ulcers and assorted nasties sprung up to celebrate! It will likely take a week or so for the last effects of radiation to filter through and then things will definitely improve. You can imagine how much I'm looking forward to that!
Seem to be losing hair — close inspection (which I try to avoid doing much) reveals some bald patches but they are at the moment hidden by hair from higher up falling over them. A sort of 'fall-over' rather than a 'comb-over' and with a little more success in concealment (he tries to persuade himself).
But of good news there is still plenty... if my red blood cell count improves by Wednesday (which they seem to think it will and of course tests will prove) then I will go home on Thursday. Even if I can't eat properly — I will do the tube feeding at home. It will be nice to have a comfy chair and all my old familiar things! And I've lost a few kilos (guessing about 7) which still leaves a comfortable reserve for winter and the operations but is a much more comfortable weight.
The tumour itself has shrunk considerably and encapsulated itself — at least that's what I understand (my medical German improves in leaps and bounds but still has a way to go) — but whatever, the doctors are always extremely pleased with its progress (regress?)
Am surrounded by love and friendship from family and friends and this has helped me much and although there are periods of discomfort still there is nothing that I can't handle at the moment and, as I said before, it will all improve soon.
Much love to all of you, my good friends
David
Well radiation is over — the last session was yesterday. Of course then last night a new crop of assorted ulcers and assorted nasties sprung up to celebrate! It will likely take a week or so for the last effects of radiation to filter through and then things will definitely improve. You can imagine how much I'm looking forward to that!
Seem to be losing hair — close inspection (which I try to avoid doing much) reveals some bald patches but they are at the moment hidden by hair from higher up falling over them. A sort of 'fall-over' rather than a 'comb-over' and with a little more success in concealment (he tries to persuade himself).
But of good news there is still plenty... if my red blood cell count improves by Wednesday (which they seem to think it will and of course tests will prove) then I will go home on Thursday. Even if I can't eat properly — I will do the tube feeding at home. It will be nice to have a comfy chair and all my old familiar things! And I've lost a few kilos (guessing about 7) which still leaves a comfortable reserve for winter and the operations but is a much more comfortable weight.
The tumour itself has shrunk considerably and encapsulated itself — at least that's what I understand (my medical German improves in leaps and bounds but still has a way to go) — but whatever, the doctors are always extremely pleased with its progress (regress?)
Am surrounded by love and friendship from family and friends and this has helped me much and although there are periods of discomfort still there is nothing that I can't handle at the moment and, as I said before, it will all improve soon.
Much love to all of you, my good friends
David
Friday, 12 October 2007
2007-10-12 — Calendar entry — last radiation session
Today is the last radiation session. Had setup a countdown spreadsheet on my laptop to highlight the remaining number of sessions — as if I need reminding — there is not much responsibility on me here and not a lot to concentrate on!
Depending on how the blood tests go I should be able to go home sometime next week.
Monday, 8 October 2007
2007-10-08 — Newsletter
Dear All,
Sorry to do this bulk mail to you all instead of individual emails, but I am a bit low on energy and there are so many of you good friends.
The good news is that I'm now in the last week of radiation. Just four more sessions to go. More good news is that the Professor peered into my mouth this morning and said the tumour was "fast weg" ("almost gone").
Not quite such good news is that although the ulcers etc (technical name mucositis) are less and less painful eating is still not possible so I remain on the feeding through nose tube method. My blood counts keep giving them problems too — first T-cells and white cells were low but now those have straightened out and the red cell count is too low. They are deciding in the next day whether I need transfusions or such like. None of this is dangerous but it might well delay my release from hospital. I am expecting to be in next week at least but it all depends
I now get very tired and lose concentration (so sleep a lot) — this is likely due to the red cells. But I'm in a safe place
Nothing is as bad as the time two weeks ago and all this I can handle without problem even though it is not pleasant.
I have had so many phone calls, emails and visits — it is so encouraging to me and really does help in keeping my spirits up. There are so many good people and I do so appreciate them all.
That's more words than the new slowed down David (whose beard has stopped growing and seems to be losing hair — though not yet noticeable except on my pillow) can normally manage in a day, so...
I'll end up with thanking you all again for your love and affection
David
Sorry to do this bulk mail to you all instead of individual emails, but I am a bit low on energy and there are so many of you good friends.
The good news is that I'm now in the last week of radiation. Just four more sessions to go. More good news is that the Professor peered into my mouth this morning and said the tumour was "fast weg" ("almost gone").
Not quite such good news is that although the ulcers etc (technical name mucositis) are less and less painful eating is still not possible so I remain on the feeding through nose tube method. My blood counts keep giving them problems too — first T-cells and white cells were low but now those have straightened out and the red cell count is too low. They are deciding in the next day whether I need transfusions or such like. None of this is dangerous but it might well delay my release from hospital. I am expecting to be in next week at least but it all depends
I now get very tired and lose concentration (so sleep a lot) — this is likely due to the red cells. But I'm in a safe place
Nothing is as bad as the time two weeks ago and all this I can handle without problem even though it is not pleasant.
I have had so many phone calls, emails and visits — it is so encouraging to me and really does help in keeping my spirits up. There are so many good people and I do so appreciate them all.
That's more words than the new slowed down David (whose beard has stopped growing and seems to be losing hair — though not yet noticeable except on my pillow) can normally manage in a day, so...
I'll end up with thanking you all again for your love and affection
David
Friday, 5 October 2007
2007-10-05 — Newsletter — to Vienna AA members
Dear All,
I've tried to find all the Vienna Fellowship email addresses in my address book — I know I don't have all and apologise to those I've missed.
I would like to thank you all so very much for the concern and love you have shown to me whilst I've been in hospital. Your phone calls , emails and visits have meant very much to me — yesterday the meeting was brought to me in my room and that was something very special
It is humbling and very comforting to realise that I am truly in a loving fellowship
The radiation treatment continues but will be finished on Friday next week. Then the mess in my mouth should start clearing and everything will improve. It is still too painful to eat and so I continue on this feeding tube through my nose direct into the stomach — which is really nowhere near as uncomfortable as I'd thought it might be.
Am very much looking forward to seeing you all soon in our natural habitat — a meeting room!
love and best wishes to you all
David
I've tried to find all the Vienna Fellowship email addresses in my address book — I know I don't have all and apologise to those I've missed.
I would like to thank you all so very much for the concern and love you have shown to me whilst I've been in hospital. Your phone calls , emails and visits have meant very much to me — yesterday the meeting was brought to me in my room and that was something very special
It is humbling and very comforting to realise that I am truly in a loving fellowship
The radiation treatment continues but will be finished on Friday next week. Then the mess in my mouth should start clearing and everything will improve. It is still too painful to eat and so I continue on this feeding tube through my nose direct into the stomach — which is really nowhere near as uncomfortable as I'd thought it might be.
Am very much looking forward to seeing you all soon in our natural habitat — a meeting room!
love and best wishes to you all
David
Wednesday, 3 October 2007
2007-10-03 — Newsletter
Dear All,
I can definitely see an end to this now. Plus the pain in my mouth is not as bad as last week. Still there and still unpleasant but definitely improved. Found I'm getting tired quite easily — there is no way I could have done any work at the same time as this. My blood cell counts are not good (low white cells) and so they are giving me injections to sort that out — nothing to worry about but needs attention. All of which confirms that I am better off in hospital.
My birthday was really pleasant. Strangely, considering the circumstances, one of the best I've had for a while. I got a number of cards. I had mentioned it was my birthday to the Professor (a nice old guy — probably younger than me thinking about it — though a bit stiff and formal) — and he had a little chat and unwound quite a lot. Then after 'lunch' he came back on his own with a beautiful bunch of flowers!
Then the family, Chris, Sarah and Margaret, all arrived. Chris bundled me into the loo to wait while they set up and then let me out. They'd tied a helium Happy Birthday balloon to the bed and stuck a big Happy Birthday banner across the window. They'd got a little bamboo tree in a pot and pinned 60 instant lottery tickets to it (which yielded prizes of €22)! And there were presents.
They'd put a lot of effort into it all and it was really nice. Chris and Margaret stayed for an hour and Sarah staying for another one (chess — I had to resign so the series is 2-1 to Sarah — honestly, children taking advantage of sick and elderly parents!). Sarah goes back early afternoon today so I won't see her — I'd thought it'd be a bit of a waste of money her coming over with me here but it proved delightful and I'm so glad she did.
Incidentally the radiation has stopped my beard hair growing (will be temporary apparently) so the morning ritual is shorter — and somewhat strange after so many years.
David
I can definitely see an end to this now. Plus the pain in my mouth is not as bad as last week. Still there and still unpleasant but definitely improved. Found I'm getting tired quite easily — there is no way I could have done any work at the same time as this. My blood cell counts are not good (low white cells) and so they are giving me injections to sort that out — nothing to worry about but needs attention. All of which confirms that I am better off in hospital.
My birthday was really pleasant. Strangely, considering the circumstances, one of the best I've had for a while. I got a number of cards. I had mentioned it was my birthday to the Professor (a nice old guy — probably younger than me thinking about it — though a bit stiff and formal) — and he had a little chat and unwound quite a lot. Then after 'lunch' he came back on his own with a beautiful bunch of flowers!
Then the family, Chris, Sarah and Margaret, all arrived. Chris bundled me into the loo to wait while they set up and then let me out. They'd tied a helium Happy Birthday balloon to the bed and stuck a big Happy Birthday banner across the window. They'd got a little bamboo tree in a pot and pinned 60 instant lottery tickets to it (which yielded prizes of €22)! And there were presents.
They'd put a lot of effort into it all and it was really nice. Chris and Margaret stayed for an hour and Sarah staying for another one (chess — I had to resign so the series is 2-1 to Sarah — honestly, children taking advantage of sick and elderly parents!). Sarah goes back early afternoon today so I won't see her — I'd thought it'd be a bit of a waste of money her coming over with me here but it proved delightful and I'm so glad she did.
Incidentally the radiation has stopped my beard hair growing (will be temporary apparently) so the morning ritual is shorter — and somewhat strange after so many years.
David
Tuesday, 2 October 2007
2007-10-02 — Calendar Entry — my Birthday
Well today is my 60th birthday. Am spending it in hospital which is not the way I planned it earlier in the year. Actually I didn't really have that many plans for an event so can't really grumble.
The family — Margaret, Chris and Sarah laid on a lovely surprise (details in the next post), and though I am not in ideal circumstances nor in an ideal place it was nevertheless one of the nicest birthdays I can remember.
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