If you have an iPad or an iPhone, and you have any interest in the night sky, then I recommend you buy this app.
David showed me a similar app on his android phone when he was here, and I keep forgetting to blog it. Rose and I are very keen (but completely ignorant) astronomers!
The app is stunningly beautiful, and I look forward to using it next time I am somewhere where I can see the stars (Hatfield is far too close to London).
- Posted using BlogPress from my iPad
Monday 28 February 2011
Lunch at the golf club
Last night was the most peaceful so far, and we both got a good night's sleep. We lazed away the morning watching recorded TV, and after the nurse had been to inject me we went to the golf club to meet with Anne and Dave, some friends we have made playing golf.
Of course, even though I had already had lunch at home, I did not miss the opportunity to have another lunch (tuna panini and chips), and just when we finished Anne and Dave arrived. Last year Dave had a stroke, so we were very much the invalids (both with walking sticks). Fortunately (if one can use this word in this context), Dave's speech, and more importantly his wit, are pretty much as before, and we had a fine time. No fewer than 4 past lady captains (including Anne) stopped by, and Geraldine even stayed to join the chat. It was a very enjoyable time, but after a couple of hours of sitting with my leg vertical, it started to get uncomfortable and so I needed a stool to rest it horizontally. We parted when Dave had to go and see his physio.
My time at home is passing so rapidly! I have only one more day. I suppose this feeling was inevitable. One big difference between this cycle of chemotherapy and the first, is that now I know what can happen, I have fear; before I had only anxiety - ignorance is bliss as they say. Still, the knowledge is also useful, and they say the second cycle is less aggressive ...
As I write this, Brandy (the cat) is taking great interest, and has boxed me a couple of times; she is just a 16 year old naughty kitten!
- Posted using BlogPress from my iPad
Of course, even though I had already had lunch at home, I did not miss the opportunity to have another lunch (tuna panini and chips), and just when we finished Anne and Dave arrived. Last year Dave had a stroke, so we were very much the invalids (both with walking sticks). Fortunately (if one can use this word in this context), Dave's speech, and more importantly his wit, are pretty much as before, and we had a fine time. No fewer than 4 past lady captains (including Anne) stopped by, and Geraldine even stayed to join the chat. It was a very enjoyable time, but after a couple of hours of sitting with my leg vertical, it started to get uncomfortable and so I needed a stool to rest it horizontally. We parted when Dave had to go and see his physio.
My time at home is passing so rapidly! I have only one more day. I suppose this feeling was inevitable. One big difference between this cycle of chemotherapy and the first, is that now I know what can happen, I have fear; before I had only anxiety - ignorance is bliss as they say. Still, the knowledge is also useful, and they say the second cycle is less aggressive ...
As I write this, Brandy (the cat) is taking great interest, and has boxed me a couple of times; she is just a 16 year old naughty kitten!
- Posted using BlogPress from my iPad
Sunday 27 February 2011
Yet another lazy Sunday
I did not sleep well last night despite the excitement of yesterdays visitors. I got up quite late and lazed around most of the morning, doing very little.
Rose has a special two-for-one offer at the restaurant at her local garden centre, so we went there for lunch. But the non-meat choice was poor, so we came home again and ate here! Well, we tried!
Although my ability to walk has definitely improved, I do not think my bad leg is improving; the swelling does not seem to be going down, and the skin is still hot. I will try and reestablish contact with the orthopaedic team on Wednesday when I go back to the hospital.
During the afternoon I watched England and India playing in the cricket world cup, and fell asleep, thus missing Scotland versus Ireland at rugby!
Later in the afternoon Marcio called from Costa Rica. He has a new baby girl (born on Monday) and mother and baby are fine. Congratulations Marcio! Les also called having come back from skiing yesterday. Hopefully I will see him next week.
Very much a lazy Sunday.
Rose has a special two-for-one offer at the restaurant at her local garden centre, so we went there for lunch. But the non-meat choice was poor, so we came home again and ate here! Well, we tried!
Although my ability to walk has definitely improved, I do not think my bad leg is improving; the swelling does not seem to be going down, and the skin is still hot. I will try and reestablish contact with the orthopaedic team on Wednesday when I go back to the hospital.
During the afternoon I watched England and India playing in the cricket world cup, and fell asleep, thus missing Scotland versus Ireland at rugby!
Later in the afternoon Marcio called from Costa Rica. He has a new baby girl (born on Monday) and mother and baby are fine. Congratulations Marcio! Les also called having come back from skiing yesterday. Hopefully I will see him next week.
Very much a lazy Sunday.
Saturday 26 February 2011
Visitors from across the pond
Today was the day for my two friends David and Dave to visit from America. We are work colleagues but have become fast friends over the years; they have been colleagues and friends for much longer than I have known them.
They have a simple itinerary; fly in Saturday, visit me at home in Hatfield, evening out in London, hotel at Heathrow and then fly back stateside Sunday morning. They came to see me in case I die! I have no intention of dying, but hey, they gotta do what they gotta do, and it is wonderful and touching that they find me worth the effort.
I booked a taxi to pick them up, and made elaborate arrangements to use me as the focal point to coordinate their meeting. But I overslept, and missed all the messages and voice mails on my phone! Fortunately they found each other in the end, and duly arrived at my house around 9am. Here we are (picture taken by Rose):
I am puffing my chest out because I look so puny next to them!
We had tea and croissants for breakfast, a great, wide ranging chat, and take-out pizzas for lunch from Dominos. They left around 2pm, and it was a tremendous pleasure to see them. They might go for the London Eye as easy entertainment; I will find out soon and let you know.
After they left, we had the rugby. First up, Italy versus Wales. One of these days the Welsh team full of its Lions stars will turn up, but yet again (just like against Scotland) they played for about 20 minutes. I swear for vast swathes of the second half they were invisible. And still they won in their sleep. Castrogiovani had a great game I thought, few others shone.
The main course (England versus France) was a tense affair. The ball was like a bar of soap, so we saw many handling errors. England deserved their win; Foden's try the standout, but Wilkinson's first kick of the ball also impressive. I think we scored at least one other try (not given), and the French had a few unlucky bounces that otherwise they may have scored from. The most disappointing performance was Ben Youngs - he lacked his usual zip; but he is young still! Tom Wood and the England back row were all impressive (except Easter's stupid penalty give-away). After the match I rang my French friend Thierry. If all goes to form we will meet again in the quarter final of the world cup in New Zealand later this year, and he thinks France will win then (despite the fact we have a history of knocking them out of the world cup!); we shall see!
A very rewarding day.
They have a simple itinerary; fly in Saturday, visit me at home in Hatfield, evening out in London, hotel at Heathrow and then fly back stateside Sunday morning. They came to see me in case I die! I have no intention of dying, but hey, they gotta do what they gotta do, and it is wonderful and touching that they find me worth the effort.
I booked a taxi to pick them up, and made elaborate arrangements to use me as the focal point to coordinate their meeting. But I overslept, and missed all the messages and voice mails on my phone! Fortunately they found each other in the end, and duly arrived at my house around 9am. Here we are (picture taken by Rose):
We had tea and croissants for breakfast, a great, wide ranging chat, and take-out pizzas for lunch from Dominos. They left around 2pm, and it was a tremendous pleasure to see them. They might go for the London Eye as easy entertainment; I will find out soon and let you know.
After they left, we had the rugby. First up, Italy versus Wales. One of these days the Welsh team full of its Lions stars will turn up, but yet again (just like against Scotland) they played for about 20 minutes. I swear for vast swathes of the second half they were invisible. And still they won in their sleep. Castrogiovani had a great game I thought, few others shone.
The main course (England versus France) was a tense affair. The ball was like a bar of soap, so we saw many handling errors. England deserved their win; Foden's try the standout, but Wilkinson's first kick of the ball also impressive. I think we scored at least one other try (not given), and the French had a few unlucky bounces that otherwise they may have scored from. The most disappointing performance was Ben Youngs - he lacked his usual zip; but he is young still! Tom Wood and the England back row were all impressive (except Easter's stupid penalty give-away). After the match I rang my French friend Thierry. If all goes to form we will meet again in the quarter final of the world cup in New Zealand later this year, and he thinks France will win then (despite the fact we have a history of knocking them out of the world cup!); we shall see!
A very rewarding day.
Friday 25 February 2011
Day trip to London
Last night I had 7 hours of uninterrupted sleep, so perhaps afternoon kipping is off the agenda! Today was the day of my trip to outpatients, an here is how it went ...
The hospital transport turned up at about 9am; I was the first pickup. We drove around the north of London picking up two other patients, and arrived at the hospital at 10:30. The haematology outpatients is in an old building just across the road from the main hospital. It is here that I will receive my next cycle of chemo.
My appointment was not until 11:30, so I waited (rather uncomfortably) playing with the iPad :) and failing to do a single crossword clue! At 11:30 the PICC team duly arrived - the same two nurses as before, and duly inserted a PICC into my right arm. If a clot develops, I have no idea what they will do as it will mean both arms have had clots. But we'll cross that bridge when we come to it I suppose ...
After the PICC was inserted, I went across to the main hospital for a chest xray to confirm that the PICC had fed in properly (it has). And then I went out for a walk down Tottenham Court Road. I can walk reasonably well (I use my walking stick), but I do get out of breath due to lack of condition and lack of red blood cells! I decided to have an eat-in pizza for lunch at Ask, and returned to outpatients at about 1:30pm to have some blood taken, and see the doctor. I had to wait a while for the latter, but she eventually came and explained some more about why we have a consolidation phase, and how long it will be. This is why ...
Each cycle of chemo kills about 95% of the cancerous cells (blasts). But the remaining blasts reproduce more aggressively than the good cells (the very definition of cancer), so a relapse is inevitable. By having another round of chemo reasonably quickly, before the the absolute number of blasts was back to where it was, fewer ad fewer blasts are left after each cycle.. When the the transplant is done, and the donor stem cells start making white cells, they will kill the remaining blasts; the fewer of these blasts to kill, the more likely a successful outcome of the transplant becomes. Thus, the number of chemo treatment cycles is a trade-off between discomfort and risk of infection against the overall number of cancerous cells remaining. The current wisdom is that two cycles before transplant is best.
The second cycle (consolidation) lasts 30 days. None of the drugs used are the same as the first cycle, and the drug regime is somewhat lighter. However, I will go neutropenic at some stage, so there is again a risk of infection, and the leg flaring up. We shall see how things progress! For at least the early stages, I will stay in the hotel, maybe being admitted after I become neutropenic.
I waited almost an hour for transport home, but eventually it came, and I got home shortly after 5pm. I am writing this whilst Rose is out for a well-earned drink with some friends; we will eat dinner when she returns. Whilst on the subject, with all the eating I have managed to gain 2 or 3 pounds since I came home, which I see as quite an achievement; it takes hard work and dedication to eat as much as I am doing!
I am looking forward to the weekend - David and David are popping over from America for a flying visit, and England play France at rugby. A mouthwatering prospect ...
The hospital transport turned up at about 9am; I was the first pickup. We drove around the north of London picking up two other patients, and arrived at the hospital at 10:30. The haematology outpatients is in an old building just across the road from the main hospital. It is here that I will receive my next cycle of chemo.
My appointment was not until 11:30, so I waited (rather uncomfortably) playing with the iPad :) and failing to do a single crossword clue! At 11:30 the PICC team duly arrived - the same two nurses as before, and duly inserted a PICC into my right arm. If a clot develops, I have no idea what they will do as it will mean both arms have had clots. But we'll cross that bridge when we come to it I suppose ...
After the PICC was inserted, I went across to the main hospital for a chest xray to confirm that the PICC had fed in properly (it has). And then I went out for a walk down Tottenham Court Road. I can walk reasonably well (I use my walking stick), but I do get out of breath due to lack of condition and lack of red blood cells! I decided to have an eat-in pizza for lunch at Ask, and returned to outpatients at about 1:30pm to have some blood taken, and see the doctor. I had to wait a while for the latter, but she eventually came and explained some more about why we have a consolidation phase, and how long it will be. This is why ...
Each cycle of chemo kills about 95% of the cancerous cells (blasts). But the remaining blasts reproduce more aggressively than the good cells (the very definition of cancer), so a relapse is inevitable. By having another round of chemo reasonably quickly, before the the absolute number of blasts was back to where it was, fewer ad fewer blasts are left after each cycle.. When the the transplant is done, and the donor stem cells start making white cells, they will kill the remaining blasts; the fewer of these blasts to kill, the more likely a successful outcome of the transplant becomes. Thus, the number of chemo treatment cycles is a trade-off between discomfort and risk of infection against the overall number of cancerous cells remaining. The current wisdom is that two cycles before transplant is best.
The second cycle (consolidation) lasts 30 days. None of the drugs used are the same as the first cycle, and the drug regime is somewhat lighter. However, I will go neutropenic at some stage, so there is again a risk of infection, and the leg flaring up. We shall see how things progress! For at least the early stages, I will stay in the hotel, maybe being admitted after I become neutropenic.
I waited almost an hour for transport home, but eventually it came, and I got home shortly after 5pm. I am writing this whilst Rose is out for a well-earned drink with some friends; we will eat dinner when she returns. Whilst on the subject, with all the eating I have managed to gain 2 or 3 pounds since I came home, which I see as quite an achievement; it takes hard work and dedication to eat as much as I am doing!
I am looking forward to the weekend - David and David are popping over from America for a flying visit, and England play France at rugby. A mouthwatering prospect ...
Thursday 24 February 2011
Eating for England
I slept a little better last night, still had a spell awake, playing bridge.
Today, like all other days, I ate a lot! There is almost no time of day when I am not eating! It is harder to do than you might think. But I am managing to gain weight, which makes it all worthwhile. I need as much as I can get before the next round of chemotherapy. I eat all types of food, both home cooked fresh food, and junk! All I need are calories!
I forgot to mention it yesterday, but when I spoke to the nurse specialist, she confirmed that the solid sample of the bone marrow biopsy showed that I am truly in remission. I never doubted it would, but now that gate is fully open (and Topol has stopped shouting in my ear).
Today I managed two circuits round the close, but my lack of haemoglobin is limiting my ability to exercise. I think the leg could do 3 circuits, but I would not have the stamina to do it. This is going to be an ongoing problem, since my red cells will take several weeks to recover even after the transplant.
Today I did not have an afternoon nap, to see if I sleep more soundly at night. I will let you know (riveting stuff this blog eh!).
- Posted using BlogPress from my iPad
Today, like all other days, I ate a lot! There is almost no time of day when I am not eating! It is harder to do than you might think. But I am managing to gain weight, which makes it all worthwhile. I need as much as I can get before the next round of chemotherapy. I eat all types of food, both home cooked fresh food, and junk! All I need are calories!
I forgot to mention it yesterday, but when I spoke to the nurse specialist, she confirmed that the solid sample of the bone marrow biopsy showed that I am truly in remission. I never doubted it would, but now that gate is fully open (and Topol has stopped shouting in my ear).
Today I managed two circuits round the close, but my lack of haemoglobin is limiting my ability to exercise. I think the leg could do 3 circuits, but I would not have the stamina to do it. This is going to be an ongoing problem, since my red cells will take several weeks to recover even after the transplant.
Today I did not have an afternoon nap, to see if I sleep more soundly at night. I will let you know (riveting stuff this blog eh!).
- Posted using BlogPress from my iPad
Pour les français ...
Suivant quelques demandes, cette annonce est en français.
Je suis maintenant bien chez moi depuis 3 jours, est je suis dans assez bonne santé. Je me promène un peut dans la rue, est la jambe s'améliore chaque jour, mais je suis toujours très faible, pesant que 76 kilos (normale c'est 88)! En plus je suis anémique (les cellules rouge se recoupe très lents), et avec la faiblesse ça limite la forme!
Et qu'est que je fait à la maison? Je mange; le maximum possible, est n'importe quoi! Évidemment, je ne peux pas perdre encore 12 kilos, mais le plus gros le mieux (ça se dit?).
Le prochaine cycle de traitement commence mercredi prochain. Au début, au lieu de rester en hôpital, je reste dans un hôtel très proche, est être traité comme malade externe. Comme ça c'est moins cher pour l'hôpital, et je peux manger au restaurent! Quand la chimiothérapie s'avance, je rentre dans l'hôpital, parce-que j'ai peur que l'infection recommence dans ma mauvais jambe.
Mais, avant tout ça, nous avons le rugby! Je vais le regarder chez moi, et j'espère il va être un beau match. Aller Angleterre!
- Posted using BlogPress from my iPad
Je suis maintenant bien chez moi depuis 3 jours, est je suis dans assez bonne santé. Je me promène un peut dans la rue, est la jambe s'améliore chaque jour, mais je suis toujours très faible, pesant que 76 kilos (normale c'est 88)! En plus je suis anémique (les cellules rouge se recoupe très lents), et avec la faiblesse ça limite la forme!
Et qu'est que je fait à la maison? Je mange; le maximum possible, est n'importe quoi! Évidemment, je ne peux pas perdre encore 12 kilos, mais le plus gros le mieux (ça se dit?).
Le prochaine cycle de traitement commence mercredi prochain. Au début, au lieu de rester en hôpital, je reste dans un hôtel très proche, est être traité comme malade externe. Comme ça c'est moins cher pour l'hôpital, et je peux manger au restaurent! Quand la chimiothérapie s'avance, je rentre dans l'hôpital, parce-que j'ai peur que l'infection recommence dans ma mauvais jambe.
Mais, avant tout ça, nous avons le rugby! Je vais le regarder chez moi, et j'espère il va être un beau match. Aller Angleterre!
- Posted using BlogPress from my iPad
Wednesday 23 February 2011
A postbox too far!
I did not sleep very well (it has not taken long to get used to home comforts!). I got up at 8:30 and came downstairs, and I did a crossword and read my book whilst Rose was busy.
We then decided to go for a walk outside, to see if I can walk well enough to do at least some of the next cycle of treatment from the hotel, instead of as an inpatient. We walked around my street (it is a circular close), and I was very pleased to be able to do it without getting too out of breath. My leg felt quite comfortable walking (I used the walking stick), and I felt much stronger than when walking in the hospital. It was a very successful outing.
We had home-made Tarte Alsacienne (cooked earlier) and a cup of tea on our return, then lazed around (me eating as regularly as I can), had lunch, and waited until the nurse came to inject me with Fragmin, and then we decided to walk to the postbox to post a letter.
The postbox is somewhat further than the simple trip round the Close, and it turned out to be a bit ambitious! It was OK on the way there, because it is slightly downhill, but half way back (going up the mildest of inclines) I got out of breath. I had to lean on Rose for the last 50 yards. Clearly I made it home, and I had a great sense of achievement, but it was probably a mistake. My pathetic little leg muscles will complain tomorrow!
The nurse specialist rang to confirm the timetable, which is pretty much as I told you. I will be home until next Tuesday, and the next cycle of treatment will start on Wednesday 2nd March, staying in the hotel. This Friday I will go to outpatients just for the day to get a new PICC line fitted and see the doctors. So, I have almost a week at home to get as strong walking as I can.
Now we have eaten dinner, and we are settling down to watch some TV.
We then decided to go for a walk outside, to see if I can walk well enough to do at least some of the next cycle of treatment from the hotel, instead of as an inpatient. We walked around my street (it is a circular close), and I was very pleased to be able to do it without getting too out of breath. My leg felt quite comfortable walking (I used the walking stick), and I felt much stronger than when walking in the hospital. It was a very successful outing.
We had home-made Tarte Alsacienne (cooked earlier) and a cup of tea on our return, then lazed around (me eating as regularly as I can), had lunch, and waited until the nurse came to inject me with Fragmin, and then we decided to walk to the postbox to post a letter.
The postbox is somewhat further than the simple trip round the Close, and it turned out to be a bit ambitious! It was OK on the way there, because it is slightly downhill, but half way back (going up the mildest of inclines) I got out of breath. I had to lean on Rose for the last 50 yards. Clearly I made it home, and I had a great sense of achievement, but it was probably a mistake. My pathetic little leg muscles will complain tomorrow!
The nurse specialist rang to confirm the timetable, which is pretty much as I told you. I will be home until next Tuesday, and the next cycle of treatment will start on Wednesday 2nd March, staying in the hotel. This Friday I will go to outpatients just for the day to get a new PICC line fitted and see the doctors. So, I have almost a week at home to get as strong walking as I can.
Now we have eaten dinner, and we are settling down to watch some TV.
Tuesday 22 February 2011
My first day at home
I have a feeling this blog may get rather dull over the next few days, as my life before ALL was certainly not interesting enough to blog, and it isn't now really!
Sleeping in our bed, with what seemed like impossibly luxurious pillows and bed clothes was very pleasant. We both woke for a couple of hours in the middle of the night and watched a documentary about obsessive bird watchers on TV; luxury!
Today Rose went off to play golf, and I amused myself watching TV, playing with the iPad and reading my book. I had a Domino's pizza delivered for lunch, and a lot of fuss with Brandy. I have to have a daily injection, and the hospital had arranged for a nurse to visit to administer it (I declined to self inject). The nurse duly arrived and the deed was done.
This afternoon I had a nap, and a hot bath (heaven), and we have just dined, somewhat early as Rose was hungry after golf (she came 4th, rather frustratingly missing a podium position).
I have some pictures of the drain, and my discharge. Here is the drain shortly after it was inserted. My leg is still very red:
Here is the drain a week later, as I was about to shower. See how much better the leg looks.
Here I am waiting in the discharge lounge:
Here are the drugs they gave me to take home:
I cannot really comprehend how many drugs I have had over the last 7 weeks. This stash is just for one or two tablets, mostly once a day! No wonder the drug budget of the NHS is so huge.
In fact, my stay in hospital has really brought home the reality of the multi-billion dollar health industry.
Sleeping in our bed, with what seemed like impossibly luxurious pillows and bed clothes was very pleasant. We both woke for a couple of hours in the middle of the night and watched a documentary about obsessive bird watchers on TV; luxury!
Today Rose went off to play golf, and I amused myself watching TV, playing with the iPad and reading my book. I had a Domino's pizza delivered for lunch, and a lot of fuss with Brandy. I have to have a daily injection, and the hospital had arranged for a nurse to visit to administer it (I declined to self inject). The nurse duly arrived and the deed was done.
This afternoon I had a nap, and a hot bath (heaven), and we have just dined, somewhat early as Rose was hungry after golf (she came 4th, rather frustratingly missing a podium position).
I have some pictures of the drain, and my discharge. Here is the drain shortly after it was inserted. My leg is still very red:
Here is the drain a week later, as I was about to shower. See how much better the leg looks.
Here I am waiting in the discharge lounge:
Here are the drugs they gave me to take home:
In fact, my stay in hospital has really brought home the reality of the multi-billion dollar health industry.
Monday 21 February 2011
Home!
Although I can scarcely believe it, I am writing this post in my lounge, after just eating dinner at home. Furthermore, I am using a laptop, which I thought would be easier than using the iPad, but a real keyboard takes some getting used to!
The physios arrived for a stair assessment. I was just good enough to pass, but it is hard work walking. I am a bit fixated on the fact that my haemoglobin is still a little low, so I get out of breath very easily.
Rose made a few trips trips to the car ferrying stuff, and at lunch time returned with some sushi for lunch (in addition to the hospital lunch I ordered). Paradoxically , the hospital lunch was actually the best they managed in my entire stay. Rose came back from her last porterage trip to the car at about 1:45 and the porter was there with a wheelchair to take me to the discharge lounge to wait for my take-away drugs. The plan was that when the drugs arrived, Rose would fetch the car, and take me home. The drugs duly arrived, and even though I am taking hardly any, it is still a big bag. There was a slight hiccup because the nurses needed to give me an extra shot of Fragmin (blood thinner) so Rose had to wait a few minutes with the car, but finally she wheeled me out to the car and we were off.
My friends, I was surprised by the size of the outside world! Riding in the car through the familiar streets of London I felt overwhelmed. Apart from a few walks around the ward corridors and the odd trip out to radiology, I have been in a room for 6 weeks. I got an inkling of what it is to be agoraphobic! By the time we reached Mill Hill, the feeling had passed, and the great outdoors looked as it always had.
And so here I am at home, with Rose sat next to me, and Brandy (the cat) on her lap, and Horizon on the TV (recorded last week). When we got home I went upstairs for a lie down. I managed the stairs OK. Rose went to the shops for a few things, and Brandy came to see me in bed, mainly to purr a lot and make sure I did not get too much sleep; she is a such a darling! When Rose returned, I got up and came downstairs, and we had dinner at the dining table just like old times. My taste is still only 90% I think, but good enough to appreciate the fresh food. I even had some wine (a very small taste of a South African Sauvignon Blanc).
The timetable is as follows: I have to go to the outpatients on Friday, to have a new PICC line inserted (this time on the right side), get some baseline blood tests (for the next cycle) and meet with the doctors. After that, I will come home again for the weekend, and if I understood correctly, will begin the second cycle (the consolidation phase) on Wednesday 2nd March. They have booked me into the Grafton hotel, but if I cannot walk well enough by then they will put me on the bed list for admittance as an inpatient.
But for now I am not thinking about the next cycle of treatment; instead I will luxuriate in home for a while longer!
The physios arrived for a stair assessment. I was just good enough to pass, but it is hard work walking. I am a bit fixated on the fact that my haemoglobin is still a little low, so I get out of breath very easily.
Rose made a few trips trips to the car ferrying stuff, and at lunch time returned with some sushi for lunch (in addition to the hospital lunch I ordered). Paradoxically , the hospital lunch was actually the best they managed in my entire stay. Rose came back from her last porterage trip to the car at about 1:45 and the porter was there with a wheelchair to take me to the discharge lounge to wait for my take-away drugs. The plan was that when the drugs arrived, Rose would fetch the car, and take me home. The drugs duly arrived, and even though I am taking hardly any, it is still a big bag. There was a slight hiccup because the nurses needed to give me an extra shot of Fragmin (blood thinner) so Rose had to wait a few minutes with the car, but finally she wheeled me out to the car and we were off.
My friends, I was surprised by the size of the outside world! Riding in the car through the familiar streets of London I felt overwhelmed. Apart from a few walks around the ward corridors and the odd trip out to radiology, I have been in a room for 6 weeks. I got an inkling of what it is to be agoraphobic! By the time we reached Mill Hill, the feeling had passed, and the great outdoors looked as it always had.
And so here I am at home, with Rose sat next to me, and Brandy (the cat) on her lap, and Horizon on the TV (recorded last week). When we got home I went upstairs for a lie down. I managed the stairs OK. Rose went to the shops for a few things, and Brandy came to see me in bed, mainly to purr a lot and make sure I did not get too much sleep; she is a such a darling! When Rose returned, I got up and came downstairs, and we had dinner at the dining table just like old times. My taste is still only 90% I think, but good enough to appreciate the fresh food. I even had some wine (a very small taste of a South African Sauvignon Blanc).
The timetable is as follows: I have to go to the outpatients on Friday, to have a new PICC line inserted (this time on the right side), get some baseline blood tests (for the next cycle) and meet with the doctors. After that, I will come home again for the weekend, and if I understood correctly, will begin the second cycle (the consolidation phase) on Wednesday 2nd March. They have booked me into the Grafton hotel, but if I cannot walk well enough by then they will put me on the bed list for admittance as an inpatient.
But for now I am not thinking about the next cycle of treatment; instead I will luxuriate in home for a while longer!
Stop Press: Discharge!
I inadvertently pulled the drain out at 5:30 this morning (it did not hurt), and since then they have been in a rush to get rid of me! So now I am going home today, and coming back on Friday to start the next cycle of chemotherapy.
Things are a bit chaotic because we had been led to believe they would keep me 24 hours after the drain was removed, so Rose did not bring any bags to take my stuff home.
I also cannot walk that well, so ambulatory outpatient is currently unrealistic. I have 3 days to be able to walk well enough to make it happen.
I will hopefully write more later today.
- Posted using BlogPress from my iPad
Things are a bit chaotic because we had been led to believe they would keep me 24 hours after the drain was removed, so Rose did not bring any bags to take my stuff home.
I also cannot walk that well, so ambulatory outpatient is currently unrealistic. I have 3 days to be able to walk well enough to make it happen.
I will hopefully write more later today.
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Sunday 20 February 2011
Another lazy Sunday
I slept pretty well last night, and woke at six. They do not serve breakfast until eight, but I had half an egg Mayo sandwich to tide me over. I have the same for tomorrow :)
The orthopaedic team arrived, and we collectively decided that the drain will be removed tomorrow. It is still draining fluid, but they think this is normal fluid associated with trauma (like swelling after a sprain), and will dissipate with time and exercise. They will keep me in at least 24 hours after the drain is removed, which means I should be going home one day next week. I will keep you informed as to the exact timetable.
Rose arrived shortly afterwards, and we decided to see if I could make it to the elevator, and maybe go down to the cafeteria for a coffee. However, it was very tiring getting there, and whilst waiting for the elevator I realised I would not be able to stand if it made many stops. So we bailed and went back to my room. After half an hour we tried again, but I only made the reception area before deciding it was not going to happen. Still, it was some good exercise. I am sure we will do the same again tomorrow, maybe a bit more.
I need to be able to walk from the hotel to the hospital if I am to be treated as an outpatient. This is clearly a goal for me to reach. The sluggish recovery of my haemoglobin (which is perfectly normal they tell me) does not help with the exercising.
My weight seems to have stabilised around the 76 kilo mark; try as I might I can't put weight on. It is going to make the next round of chemotherapy worrying.
After lunch I felt very sleepy. Rose read to me a bit, and after she left I slept for an hour or so. During the afternoon, Patrick called for a chat, and he mentioned that yes, he'd watched the Stewart Lee, and that Stewart Lee has a book that he had hoped to get for Christmas (but did not) and it looked quite good.
I had discussed with Rose that I need to start reading again; I know that this years Booker prize winner is available on Kindle, but so is the Stewart Lee ... so I plumped for that, and have started it. It is so far very enjoyable.
Now, the long evening stretches out before me. I am in my seventh week in hospital, and I am looking forward to a change of scenery.
- Posted using BlogPress from my iPad
The orthopaedic team arrived, and we collectively decided that the drain will be removed tomorrow. It is still draining fluid, but they think this is normal fluid associated with trauma (like swelling after a sprain), and will dissipate with time and exercise. They will keep me in at least 24 hours after the drain is removed, which means I should be going home one day next week. I will keep you informed as to the exact timetable.
Rose arrived shortly afterwards, and we decided to see if I could make it to the elevator, and maybe go down to the cafeteria for a coffee. However, it was very tiring getting there, and whilst waiting for the elevator I realised I would not be able to stand if it made many stops. So we bailed and went back to my room. After half an hour we tried again, but I only made the reception area before deciding it was not going to happen. Still, it was some good exercise. I am sure we will do the same again tomorrow, maybe a bit more.
I need to be able to walk from the hotel to the hospital if I am to be treated as an outpatient. This is clearly a goal for me to reach. The sluggish recovery of my haemoglobin (which is perfectly normal they tell me) does not help with the exercising.
My weight seems to have stabilised around the 76 kilo mark; try as I might I can't put weight on. It is going to make the next round of chemotherapy worrying.
After lunch I felt very sleepy. Rose read to me a bit, and after she left I slept for an hour or so. During the afternoon, Patrick called for a chat, and he mentioned that yes, he'd watched the Stewart Lee, and that Stewart Lee has a book that he had hoped to get for Christmas (but did not) and it looked quite good.
I had discussed with Rose that I need to start reading again; I know that this years Booker prize winner is available on Kindle, but so is the Stewart Lee ... so I plumped for that, and have started it. It is so far very enjoyable.
Now, the long evening stretches out before me. I am in my seventh week in hospital, and I am looking forward to a change of scenery.
- Posted using BlogPress from my iPad
Saturday 19 February 2011
YouTube
I have discovered YouTube! Well, of course it was always there, and I have watched occasional clips that were sent to me in the past. But here in hospital, I have really begun to appreciate it for two things; stand-up comedy and music videos.
Yvonne recommended Eddie Izzard on the "canteen in the Death Star". It is hilarious, and there are many, many clips from all my favourites. I just watched Stewart Lee talking about "Braveheart" to a Glasgow audience. Fabulous! (It is the piece called "Identity" there are two parts. Part one is at: http://www.youtube.com/watch?v=ybQCNb4AuW4&feature=youtube_gdata_player)
And it is not too bandwidth hungry.
I am not sure if I will watch it when all this is behind me. I guess time will tell.
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Yvonne recommended Eddie Izzard on the "canteen in the Death Star". It is hilarious, and there are many, many clips from all my favourites. I just watched Stewart Lee talking about "Braveheart" to a Glasgow audience. Fabulous! (It is the piece called "Identity" there are two parts. Part one is at: http://www.youtube.com/watch?v=ybQCNb4AuW4&feature=youtube_gdata_player)
And it is not too bandwidth hungry.
I am not sure if I will watch it when all this is behind me. I guess time will tell.
- Posted using BlogPress from my iPad
Drain town!
My ill feeling last evening was definitely due to the eating I did, rather than any real illness! I woke in the night feeling fine, and did some crossword clues, listened to music and played some bridge.
It is worth saying that iBridgeBaron has been a life saver for me. It is engaging and I hope has improved my play as declarer. I can't say the same for the bidding though. I switched to basic Acol but it still makes crazy jumps to slam, and bids 3 card suits.
At 8:30, the weekend orthopaedic team arrived. They don't know me from Adam, but we did at least discuss the drain. It is still draining fluid. The ortho doctor said he would be back to review in the morning. The haematologist registrar thinks we should take the drain out on Monday, and I am tempted to agree. If there is a problem, it is better that the full complement of staff are on hand to deal with it. So, for tomorrow as well the drain stays in. It is not really draining pus anymore, rather a lighter fluid. The haematology doctor thinks it should be allowed to drain, but the final say regarding removal belongs to the orthopaedic team.
At around 2pm my cousin Susan came to visit along with Lisa and Sarah. They brought take-out pizzas, and we ate together. (Mine in addition to the meagre repast from hospital catering I had eaten earlier). They also brought me an apple danish for dessert, more cheese and onion crisps, and some pickled cucumbers! We had a great time chatting away about many things; it was a pleasure to see them, if somewhat tiring! (In the nicest possible way) They left around 5:30.
Since then time seems to have flown. I feel rather full, but not sick and headachy like yesterday.
Time is dragging on now. Maybe I should try reading a book again, but I cannot seem to summon the concentration required.
This drainage interlude is an unwelcome but ultimately necessary delay in my treatment regime. At least I am in reasonably good health.
- Posted using BlogPress from my iPad
It is worth saying that iBridgeBaron has been a life saver for me. It is engaging and I hope has improved my play as declarer. I can't say the same for the bidding though. I switched to basic Acol but it still makes crazy jumps to slam, and bids 3 card suits.
At 8:30, the weekend orthopaedic team arrived. They don't know me from Adam, but we did at least discuss the drain. It is still draining fluid. The ortho doctor said he would be back to review in the morning. The haematologist registrar thinks we should take the drain out on Monday, and I am tempted to agree. If there is a problem, it is better that the full complement of staff are on hand to deal with it. So, for tomorrow as well the drain stays in. It is not really draining pus anymore, rather a lighter fluid. The haematology doctor thinks it should be allowed to drain, but the final say regarding removal belongs to the orthopaedic team.
At around 2pm my cousin Susan came to visit along with Lisa and Sarah. They brought take-out pizzas, and we ate together. (Mine in addition to the meagre repast from hospital catering I had eaten earlier). They also brought me an apple danish for dessert, more cheese and onion crisps, and some pickled cucumbers! We had a great time chatting away about many things; it was a pleasure to see them, if somewhat tiring! (In the nicest possible way) They left around 5:30.
Since then time seems to have flown. I feel rather full, but not sick and headachy like yesterday.
Time is dragging on now. Maybe I should try reading a book again, but I cannot seem to summon the concentration required.
This drainage interlude is an unwelcome but ultimately necessary delay in my treatment regime. At least I am in reasonably good health.
- Posted using BlogPress from my iPad
Friday 18 February 2011
The drain just keeps on giving
I slept OK, and was pleased to see the orthopaedic consultant bright and early at 8:30. I thought that the drain was not doing much anymore but he had a squeeze and thought some more pus came out, so he thought we should keep it in for another day, ie today, and maybe remove the drain tomorrow. However, later on we changed the drain tube and bag, and pus flowed out! The orthopaedic consultant is going skiing tomorrow so it is probably the last I will see of him this time (I hope). We just changed the tube and bag again, and the pus is still flowing at a pretty fair pace. So now I am in two minds about removing the drain. I expect the ortho team tomorrow (minus consultant), but the registrar will have an opinion I am sure.
The orthopaedic consultant warned me that it is unlikely that all the infection will be gone from my leg before the next round of chemotherapy, and we can expect it will flare up again next time I am neutropenic.
Rose arrived, and we pretty soon we went for a walk up the corridor, this time I used a stick. It was quite tiring, but we made it OK. My weight was stable again today, which is amazing given the amount I am eating. Today I had a Sushi box, followed by fish and chips for lunch, a couple of packets of crisps, half and egg mayonnaise sandwich. I just ate macaroni cheese and yoghurt for dinner, I am about to have an en-shake as well. So many calories!
It was the day of the haematology consultant's round, and we chatted about my leg, home respite, and the next cycle of treatment. We discussed how to manage my bad leg, and he said they can give prophylactic antibiotics, but there is a risk that the bugs will become resistant. A fine balance needs to be kept! At least everyone knows about the problem now, and knowledge is power.
I need to get the drain removed in order to get out of here. But if it is removed prematurely, then pus will just build up again and we will be back to square one. It is frustrating that we don't know exactly what bacteria we are dealing with, and the haematology consultant said that even if the infection takes hold, we will only have a 50% chance of finding out what it is. (Remember that all antibiotics have been stopped to see what happens)
Rose and I tackled the crossword with some success. My mental capacity is definitely returning to full strength! After lunch, Yvonne arrived, sporting yet another new hairdo, and we chatted amiably for a couple of hours. The ladies left at around 3pm and I had a small nap.
This evening I am feeling a little under the weather. I don't know if it is because I have eaten so much, or because of my bad leg, or what. I think I need some anti-sickness drugs!
The carrot of home time is dangling in front of me, but the stick of draining pus is still whacking me in the backside! So these are slightly uncertain times.
- Posted using BlogPress from my iPad
The orthopaedic consultant warned me that it is unlikely that all the infection will be gone from my leg before the next round of chemotherapy, and we can expect it will flare up again next time I am neutropenic.
Rose arrived, and we pretty soon we went for a walk up the corridor, this time I used a stick. It was quite tiring, but we made it OK. My weight was stable again today, which is amazing given the amount I am eating. Today I had a Sushi box, followed by fish and chips for lunch, a couple of packets of crisps, half and egg mayonnaise sandwich. I just ate macaroni cheese and yoghurt for dinner, I am about to have an en-shake as well. So many calories!
It was the day of the haematology consultant's round, and we chatted about my leg, home respite, and the next cycle of treatment. We discussed how to manage my bad leg, and he said they can give prophylactic antibiotics, but there is a risk that the bugs will become resistant. A fine balance needs to be kept! At least everyone knows about the problem now, and knowledge is power.
I need to get the drain removed in order to get out of here. But if it is removed prematurely, then pus will just build up again and we will be back to square one. It is frustrating that we don't know exactly what bacteria we are dealing with, and the haematology consultant said that even if the infection takes hold, we will only have a 50% chance of finding out what it is. (Remember that all antibiotics have been stopped to see what happens)
Rose and I tackled the crossword with some success. My mental capacity is definitely returning to full strength! After lunch, Yvonne arrived, sporting yet another new hairdo, and we chatted amiably for a couple of hours. The ladies left at around 3pm and I had a small nap.
This evening I am feeling a little under the weather. I don't know if it is because I have eaten so much, or because of my bad leg, or what. I think I need some anti-sickness drugs!
The carrot of home time is dangling in front of me, but the stick of draining pus is still whacking me in the backside! So these are slightly uncertain times.
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Thursday 17 February 2011
A slow day, little progress
I passed a peaceful enough night, but I was disappointed when the orthopaedic consultant did not turn up :(
Fortunately, I am feeling pretty well, and so it is just a rather annoying delay. Rose arrived bright and early, and she shared my disappointment. I went to brush my teeth, and just then the ortho nurse and registrar showed up. Unfortunately the consultant was busy and could not come. The nurse tried to squeeze more fluid from my leg, but nothing was forthcoming. I think the drain has come to the end of it's useful life, but despite their promises to talk to the consultant and get back to me they did not. So the drain is still there, not really doing anything. The ortho nurse is Liverpudlian, and covets my iPad! We had a nice chat with her!
I also did not get to see my haematology registrar, but the SHO did talk to me. She said she would discuss things with the microbiology consultant, and she kept her word. They have decided to stop the Meropenem (broad spectrum antibiotic) to see what happens. If the infection is still in the ascendency in my leg, my temperature will rise. If it does not, it means my White cells are in control. My leg is still hot, but it might be the trauma of having the drain inserted. If my temperature does rise, they should be able to get a blood culture and determine what the bug is, and prescribe a targeted antibiotic.
Ultimately, it is the orthopaedic consultant who will decide when the drain is removed. I really hope he comes tomorrow.
Returning to more prosaic things, today I managed to have a shower, sitting down! It was a bit of a palaver covering up the drain, but it was worth it. Rose also brought clean pyjamas, so I really was a clean bunny. After the shower we went for a walk up the corridor, with me walking unaided. It is a bit if a struggle, and quite painful. Later on, the physio arrived with a walking stick, which makes walking a little easier. We did some exercises, including some standing, but the pain was bad.
For lunch, Rose got a take out pizza again. It was better than last time. Now I am having fewer drugs, I think my taste is very slowly returning to normal. After the pizza, I had some poached plaice and veg from the Kosher menu, and it was also pretty good. The sauce that then plaice was in did not look good, but it kept the fish moist and tasty.
For dinner I had Halal veggie, and it was good. Even though I eat 3 packets of crisps, have two lunches, and dinner, I still managed to lose half a kilo! It is absurd!
As I said, I am taking far fewer drugs than before. No more metronidazole (for the diarrhoea is no more), no more Meropenem. It does make me feel things have improved. Just that pesky drain.
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Fortunately, I am feeling pretty well, and so it is just a rather annoying delay. Rose arrived bright and early, and she shared my disappointment. I went to brush my teeth, and just then the ortho nurse and registrar showed up. Unfortunately the consultant was busy and could not come. The nurse tried to squeeze more fluid from my leg, but nothing was forthcoming. I think the drain has come to the end of it's useful life, but despite their promises to talk to the consultant and get back to me they did not. So the drain is still there, not really doing anything. The ortho nurse is Liverpudlian, and covets my iPad! We had a nice chat with her!
I also did not get to see my haematology registrar, but the SHO did talk to me. She said she would discuss things with the microbiology consultant, and she kept her word. They have decided to stop the Meropenem (broad spectrum antibiotic) to see what happens. If the infection is still in the ascendency in my leg, my temperature will rise. If it does not, it means my White cells are in control. My leg is still hot, but it might be the trauma of having the drain inserted. If my temperature does rise, they should be able to get a blood culture and determine what the bug is, and prescribe a targeted antibiotic.
Ultimately, it is the orthopaedic consultant who will decide when the drain is removed. I really hope he comes tomorrow.
Returning to more prosaic things, today I managed to have a shower, sitting down! It was a bit of a palaver covering up the drain, but it was worth it. Rose also brought clean pyjamas, so I really was a clean bunny. After the shower we went for a walk up the corridor, with me walking unaided. It is a bit if a struggle, and quite painful. Later on, the physio arrived with a walking stick, which makes walking a little easier. We did some exercises, including some standing, but the pain was bad.
For lunch, Rose got a take out pizza again. It was better than last time. Now I am having fewer drugs, I think my taste is very slowly returning to normal. After the pizza, I had some poached plaice and veg from the Kosher menu, and it was also pretty good. The sauce that then plaice was in did not look good, but it kept the fish moist and tasty.
For dinner I had Halal veggie, and it was good. Even though I eat 3 packets of crisps, have two lunches, and dinner, I still managed to lose half a kilo! It is absurd!
As I said, I am taking far fewer drugs than before. No more metronidazole (for the diarrhoea is no more), no more Meropenem. It does make me feel things have improved. Just that pesky drain.
- Posted using BlogPress from my iPad
Wednesday 16 February 2011
My Dad's story
Although I was reluctant to do so initially, I agreed with my brothers that it is OK to put my Dad's story on the blog, so here it is. He truly was a remarkable man, and we loved him dearly. Many thanks to Les who put together most of this; I added some embellishments after watching his interview with UCL ...
Dad didn't talk to us much at all about his life during the war until around the time the film Schindler's List was made and he became part of Steven Spielberg's project to catalogue the testimony of all the then survivors of the Holocaust. Dad was also one of the people interviewed as part of a similar project at University College London.
He was born in Lask, a small village near Lodz in Poland, in December 1927 in a Jewish quarter known as a “stettle”. He had two sisters, Sara, older than him and Rosa who was younger. He was nearly 12 years old when the Germans invaded Poland.
Dad's father, was taken away by the Germans for labour as soon as Poland was occupied and he never saw him again. The rest of Dad's family was rounded up by the Nazis and put into the Lask Ghetto. In August 1942 the Lask ghetto was liquidated and his mother and his younger sister were taken away to Chelmno. Dad and his older sister, Sara, were strong enough to work and so went off to the Lodz ghetto to join labour gangs. In fact Dad was lucky to acquire skill as a builder with a capable engineer, and this team of builders did a lot of work outside the ghetto; at one point even building a Gestapo prison!
No doubt this is where Dad's work ethic that we all came to know must have started. While you could work you were not “taken away” - there were constant "selections" made in these ghettos.
Just before the Lodz ghetto was wound up in August 1944, Sara got appendicitis, and without any proper hospital facilities in the ghetto, she never really recovered. They both ended up in a camp called Buna (part of Auschwitz-Birkenau) where he continued to work but Sara, due to her condition was not so lucky and he never saw her again.
On New Year's Eve 1944/5 Dad and the other survivors in Buna were forced by the Germans to march to another camp, Dora, in the Harz mountains, a journey of some 4-5 weeks, in the freezing cold. Any who fell on the way were killed and Dad almost didn't make it. He only survived the journey because he was helped by someone else he knew from Lask to stay on his feet. This person, I do not recall his name, was a musician, and like Dad he also managed to survive the war and moved back to Lask. When Dad had a job earning money in Israel, one of the first things he did was to buy a Saxaphone and send it back to Poland for this man. Perhaps here we can see the start of the generosity that we all came to know.
At Dora, they worked loading the infamous V-bombs onto trucks. They did not stay long.
From Dora, Dad was transported to Belsen where they were locked up and starved by their Hungarian guards. Dad was so weak when the British liberated the camp that he was unable to get off the bunk he was lying on. Had the British arrived even a day later, we probably would not be here today.
When Dad was well enough he went to the Red Cross to try and track down his family.Finding that they were all dead, he decided not to go back to Poland and, after hanging around Allied DP camps in Germany, he was recruited and transported to Palestine by Haganah, a Jewish paramilitary organisation. They were trucked through France to Marseilles, and put on a boat. The British turned them away to Cyprus, but eventually the British left and he made it to Israel to fight in the 1948 war of independence.
One day during that war, when training in the morning with his company, Dad twisted his ankle. That very afternoon, his company was ordered into an attack and he was not allowed to go because he couldn't march. If he had gone with them then, probably we would not be here today as every man in his company was killed.
Unable to march Dad was sent to the kitchens and perhaps it is here that he found his calling. He was now just 21 years old and, for the previous 9 years, had never had what most of us would consider to be proper meals.
After the state of Israel was created, Dad went to Switzerland to study to be a chef and get his Cordon Bleue certificate. He went back to Israel where he met and married my mother, and then in 1954 came to England with her as she was pregnant and wanted to be at home with her family.
After working in London for a few years, Dad took over the Carmel Hotel in 1962/63, renaming it to the New Carmel Hotel. It was a Victorian style building across 4 floors, with 30 bedrooms, part of a large block of hotels right on the cliff top in Cliftonville, a rather genteel "suburb" of the popular seaside town of Margate, which is in the extreme southeast of England. He stayed for the next 49 years; more of his life was spent here than anywhere else.
Here is a picture of him at work, pretty much as I see him in my mind's eye:
Dad didn't talk to us much at all about his life during the war until around the time the film Schindler's List was made and he became part of Steven Spielberg's project to catalogue the testimony of all the then survivors of the Holocaust. Dad was also one of the people interviewed as part of a similar project at University College London.
He was born in Lask, a small village near Lodz in Poland, in December 1927 in a Jewish quarter known as a “stettle”. He had two sisters, Sara, older than him and Rosa who was younger. He was nearly 12 years old when the Germans invaded Poland.
Dad's father, was taken away by the Germans for labour as soon as Poland was occupied and he never saw him again. The rest of Dad's family was rounded up by the Nazis and put into the Lask Ghetto. In August 1942 the Lask ghetto was liquidated and his mother and his younger sister were taken away to Chelmno. Dad and his older sister, Sara, were strong enough to work and so went off to the Lodz ghetto to join labour gangs. In fact Dad was lucky to acquire skill as a builder with a capable engineer, and this team of builders did a lot of work outside the ghetto; at one point even building a Gestapo prison!
No doubt this is where Dad's work ethic that we all came to know must have started. While you could work you were not “taken away” - there were constant "selections" made in these ghettos.
Just before the Lodz ghetto was wound up in August 1944, Sara got appendicitis, and without any proper hospital facilities in the ghetto, she never really recovered. They both ended up in a camp called Buna (part of Auschwitz-Birkenau) where he continued to work but Sara, due to her condition was not so lucky and he never saw her again.
On New Year's Eve 1944/5 Dad and the other survivors in Buna were forced by the Germans to march to another camp, Dora, in the Harz mountains, a journey of some 4-5 weeks, in the freezing cold. Any who fell on the way were killed and Dad almost didn't make it. He only survived the journey because he was helped by someone else he knew from Lask to stay on his feet. This person, I do not recall his name, was a musician, and like Dad he also managed to survive the war and moved back to Lask. When Dad had a job earning money in Israel, one of the first things he did was to buy a Saxaphone and send it back to Poland for this man. Perhaps here we can see the start of the generosity that we all came to know.
At Dora, they worked loading the infamous V-bombs onto trucks. They did not stay long.
From Dora, Dad was transported to Belsen where they were locked up and starved by their Hungarian guards. Dad was so weak when the British liberated the camp that he was unable to get off the bunk he was lying on. Had the British arrived even a day later, we probably would not be here today.
When Dad was well enough he went to the Red Cross to try and track down his family.Finding that they were all dead, he decided not to go back to Poland and, after hanging around Allied DP camps in Germany, he was recruited and transported to Palestine by Haganah, a Jewish paramilitary organisation. They were trucked through France to Marseilles, and put on a boat. The British turned them away to Cyprus, but eventually the British left and he made it to Israel to fight in the 1948 war of independence.
One day during that war, when training in the morning with his company, Dad twisted his ankle. That very afternoon, his company was ordered into an attack and he was not allowed to go because he couldn't march. If he had gone with them then, probably we would not be here today as every man in his company was killed.
Unable to march Dad was sent to the kitchens and perhaps it is here that he found his calling. He was now just 21 years old and, for the previous 9 years, had never had what most of us would consider to be proper meals.
After the state of Israel was created, Dad went to Switzerland to study to be a chef and get his Cordon Bleue certificate. He went back to Israel where he met and married my mother, and then in 1954 came to England with her as she was pregnant and wanted to be at home with her family.
After working in London for a few years, Dad took over the Carmel Hotel in 1962/63, renaming it to the New Carmel Hotel. It was a Victorian style building across 4 floors, with 30 bedrooms, part of a large block of hotels right on the cliff top in Cliftonville, a rather genteel "suburb" of the popular seaside town of Margate, which is in the extreme southeast of England. He stayed for the next 49 years; more of his life was spent here than anywhere else.
Here is a picture of him at work, pretty much as I see him in my mind's eye:
A walk in the ward
I slept OK last night, and true to form the orthopaedic consultant came round to check on progress.
I could still manage to move some pus by pressing on the wound, but there is a very tender area on the bone that seems very persistent. He hoped that the ultrasound would reveal something.
Rose came at 9:30, and organised a walk in the corridor. She even brought my dressing gown from home so I would look decent. We managed well, although it was quite tiring, and even did a repeat performance later. I have a feeling this will be a daily occurrence. Rose also came bearing cheese and onion crisps (chips for my US followers), as the hospital has no more!
We had a nice chat, and finished the Bradley Wiggins book. Rose left at 3 and shortly thereafter I went for the ultrasound.
It was not very informative, and I will be interested to see what the orthopaedic consultant makes of it. The radiologist said "there are no organised collections of fluid". There is fluid, but not a collection in one particular place. I cannot seem to force more pus out either, so the next step will be interesting.
Whilst I was in ultrasound, Pete arrived to visit. I'm afraid he had to wait half an hour, and so his visit seemed too short to me. Should have worn a tie with the jacket IMHO, but he no like.
Later on, both Babs and Marilyn arrived to visit at the same time! Babs brought a still from fiddler on the roof with a speech bubble of Tevya shouting "Remission". We had a nice chat, Marilyn has just been to Rome, and a great time; the weather was kind for February.
Thanks to Colleen for the card that arrived today.
All in all, a quiet day.
- Posted using BlogPress from my iPad
I could still manage to move some pus by pressing on the wound, but there is a very tender area on the bone that seems very persistent. He hoped that the ultrasound would reveal something.
Rose came at 9:30, and organised a walk in the corridor. She even brought my dressing gown from home so I would look decent. We managed well, although it was quite tiring, and even did a repeat performance later. I have a feeling this will be a daily occurrence. Rose also came bearing cheese and onion crisps (chips for my US followers), as the hospital has no more!
We had a nice chat, and finished the Bradley Wiggins book. Rose left at 3 and shortly thereafter I went for the ultrasound.
It was not very informative, and I will be interested to see what the orthopaedic consultant makes of it. The radiologist said "there are no organised collections of fluid". There is fluid, but not a collection in one particular place. I cannot seem to force more pus out either, so the next step will be interesting.
Whilst I was in ultrasound, Pete arrived to visit. I'm afraid he had to wait half an hour, and so his visit seemed too short to me. Should have worn a tie with the jacket IMHO, but he no like.
Later on, both Babs and Marilyn arrived to visit at the same time! Babs brought a still from fiddler on the roof with a speech bubble of Tevya shouting "Remission". We had a nice chat, Marilyn has just been to Rome, and a great time; the weather was kind for February.
Thanks to Colleen for the card that arrived today.
All in all, a quiet day.
- Posted using BlogPress from my iPad
Tuesday 15 February 2011
Remission
It has been a busy day, possibly the best day I have had for good news since we discovered that Harry is a perfect match donor.
I slept well; diarrhoea is gone for now, and only my bladder wakes me which I am not used to. But given the trauma it has suffered, I forgive it. It is still a bit of a ceremony to get to the loo, so I keep some bottles by the bed. Nigh-time is certainly a lot more comfortable.
The orthopaedic consultant and his team came again, and I 'fessed up to him that I blogged he was smart, decisive but a bit of sadist. He laughed and agreed, and then inflicted agony on me again, but as ever it does get the pus moving. However, there was too much tissue sediment for it to drain a lot, and he ordered another flush of saline. He also urged me to do what he was doing (I thought "you must be joking"). Later on in the afternoon, the nurse changed the tube, dressing and bag, and performed the flush. There was a little flow, but I pressed down on the tender area and the pus flowed (along with my tears).
I may have another go before turning in, but I won't be able to see the effect so it won't be so rewarding. They have booked me for an ultrasound tomorrow to see how much pus is left, and to see if there are any other pockets of pus that have not been reached.
Harry came for a visit at 10:00 and the physio also came. She also proceeded to torture me, but I am not very self disciplined so I do need somebody to push me (Rose likes playing this role). Finally I got to relax, and chat with Harry ... and then my doctor came in to visit.
He told me some very good news. When I was admitted, 40% of my hlood cells were blasts (the primitive cells that do nothing and indicate cancer). The preliminary results of the bone marrow biopsy indicate blasts at 2%, the normal being under 5%. So, I am in remission. I still have to wait for the results from the solid matter tests (another week), but this is still very good news.
The doctor was also very upbeat about my leg. He thinks it will recover in a few days. He wanted me to restart taking oral Clindamycin, to clear out any residual infection. But since this has a side effect of diarrhoea, I asked him to wait until I can walk properly and the drain is removed, and he agreed. With a fair wind I might be going home sometime next week for a week or so. My fingers are crossed.
I have always thought of remission as a gate to pass. It is now open, or at least opening. For those of you who know the musical "Fiddler on the Roof", the opening song has the full cast belting out "tradition!", and in my mind I hear them singing "remission!" the other side of the gate. As an aside, when we were kids our Mum took us to the West End to see the show, starring Topol! I can still remember it (or at least fool myself into thinking I can).
To tie up the rather tortured time sequence in this post, I had a nice chat with Harry until about 2pm, and then a little nap before the nurse came to minister to my leg drain. Time has flown somewhat since then.
On the catering front, their standards have slipped again, and I think I am forced to write. Lunch was poor, and half of dinner was missing! I had to buzz the nurse to chase after them, which is gross misuse of nursing time IMHO and I was not happy to do it.
As a footnote to the BBC iPlayer, I watched Top Gear, and it took over 200M! This in "normal" quality. Don't think I'll be watching anymore. It had to stop 3 times to catch up with streaming too.
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I slept well; diarrhoea is gone for now, and only my bladder wakes me which I am not used to. But given the trauma it has suffered, I forgive it. It is still a bit of a ceremony to get to the loo, so I keep some bottles by the bed. Nigh-time is certainly a lot more comfortable.
The orthopaedic consultant and his team came again, and I 'fessed up to him that I blogged he was smart, decisive but a bit of sadist. He laughed and agreed, and then inflicted agony on me again, but as ever it does get the pus moving. However, there was too much tissue sediment for it to drain a lot, and he ordered another flush of saline. He also urged me to do what he was doing (I thought "you must be joking"). Later on in the afternoon, the nurse changed the tube, dressing and bag, and performed the flush. There was a little flow, but I pressed down on the tender area and the pus flowed (along with my tears).
I may have another go before turning in, but I won't be able to see the effect so it won't be so rewarding. They have booked me for an ultrasound tomorrow to see how much pus is left, and to see if there are any other pockets of pus that have not been reached.
Harry came for a visit at 10:00 and the physio also came. She also proceeded to torture me, but I am not very self disciplined so I do need somebody to push me (Rose likes playing this role). Finally I got to relax, and chat with Harry ... and then my doctor came in to visit.
He told me some very good news. When I was admitted, 40% of my hlood cells were blasts (the primitive cells that do nothing and indicate cancer). The preliminary results of the bone marrow biopsy indicate blasts at 2%, the normal being under 5%. So, I am in remission. I still have to wait for the results from the solid matter tests (another week), but this is still very good news.
The doctor was also very upbeat about my leg. He thinks it will recover in a few days. He wanted me to restart taking oral Clindamycin, to clear out any residual infection. But since this has a side effect of diarrhoea, I asked him to wait until I can walk properly and the drain is removed, and he agreed. With a fair wind I might be going home sometime next week for a week or so. My fingers are crossed.
I have always thought of remission as a gate to pass. It is now open, or at least opening. For those of you who know the musical "Fiddler on the Roof", the opening song has the full cast belting out "tradition!", and in my mind I hear them singing "remission!" the other side of the gate. As an aside, when we were kids our Mum took us to the West End to see the show, starring Topol! I can still remember it (or at least fool myself into thinking I can).
To tie up the rather tortured time sequence in this post, I had a nice chat with Harry until about 2pm, and then a little nap before the nurse came to minister to my leg drain. Time has flown somewhat since then.
On the catering front, their standards have slipped again, and I think I am forced to write. Lunch was poor, and half of dinner was missing! I had to buzz the nurse to chase after them, which is gross misuse of nursing time IMHO and I was not happy to do it.
As a footnote to the BBC iPlayer, I watched Top Gear, and it took over 200M! This in "normal" quality. Don't think I'll be watching anymore. It had to stop 3 times to catch up with streaming too.
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Monday 14 February 2011
Pus
I hope you'll excuse the title, but it somehow seems appropriate, and it is still the main topic for my blog ...
I slept well last night, the diarrhoea seems to be beaten, but they will of course finish the course of metronidazole. This is all right and proper, but a bit annoying since today it has finally caught up with me and made me feel a little nauseous (its common side effect).
The orthopaedic team called this morning, and the consultant had another go at my leg. I rather like him (comes over as smart, decisive, experienced), but he seems to lean toward sadism a bit too much for my liking! He manipulated my foot, flexing it hard whilst pushing on the tender area and pus flowed (you could see movement at least). He pronounced that I needed to to do this exercise as much as possible, and they will be back again tomorrow to see how I am doing.
Rose arrived later, and we tried to do some standing squat exercises. I say we, of course I mean me! I cannot say it was a roaring success, but I can weight-bear on my bad leg a lot better than yesterday. I think I managed 4 down-and-ups. I have also walked to the loo a few times - surely this is enough? At least pus seems to be draining steadily, if somewhat slowly.
Rose bought me a Valentines card :) I am afraid I was not able to reciprocate :(
I had pasta from the hospital kitchen for lunch, but in addition Rose also went out for a take-away pizza from Ask just over the road. She got a seafood pizza, and although it did not taste 100% right, it was still pretty delicious, especially the doughy bits. A very nice treat. Since the diarrhoea has gone, I am safer to be around.
After the leg torture, the exercise, and the pizza, I was feeling tired, and fell asleep to Rose reading from Bradley Wiggins. I awoke as she was leaving. Rose is golfing tomorrow, and I wish her good luck.
This afternoon I watched the DVD of my Dad's story as told to UCL. I only cried right near the end, but very much enjoyed listening to him. We are lucky to have this record.
I have noticed there is a very strong 3G signal in my new room (4). I just tried BBC iPlayer, and it works pretty well! So my earlier failed efforts were really all down to the crummy signal I had.
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I slept well last night, the diarrhoea seems to be beaten, but they will of course finish the course of metronidazole. This is all right and proper, but a bit annoying since today it has finally caught up with me and made me feel a little nauseous (its common side effect).
The orthopaedic team called this morning, and the consultant had another go at my leg. I rather like him (comes over as smart, decisive, experienced), but he seems to lean toward sadism a bit too much for my liking! He manipulated my foot, flexing it hard whilst pushing on the tender area and pus flowed (you could see movement at least). He pronounced that I needed to to do this exercise as much as possible, and they will be back again tomorrow to see how I am doing.
Rose arrived later, and we tried to do some standing squat exercises. I say we, of course I mean me! I cannot say it was a roaring success, but I can weight-bear on my bad leg a lot better than yesterday. I think I managed 4 down-and-ups. I have also walked to the loo a few times - surely this is enough? At least pus seems to be draining steadily, if somewhat slowly.
Rose bought me a Valentines card :) I am afraid I was not able to reciprocate :(
I had pasta from the hospital kitchen for lunch, but in addition Rose also went out for a take-away pizza from Ask just over the road. She got a seafood pizza, and although it did not taste 100% right, it was still pretty delicious, especially the doughy bits. A very nice treat. Since the diarrhoea has gone, I am safer to be around.
After the leg torture, the exercise, and the pizza, I was feeling tired, and fell asleep to Rose reading from Bradley Wiggins. I awoke as she was leaving. Rose is golfing tomorrow, and I wish her good luck.
This afternoon I watched the DVD of my Dad's story as told to UCL. I only cried right near the end, but very much enjoyed listening to him. We are lucky to have this record.
I have noticed there is a very strong 3G signal in my new room (4). I just tried BBC iPlayer, and it works pretty well! So my earlier failed efforts were really all down to the crummy signal I had.
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Of cats and dead white cells
I would like to thank all of you who pointed out my spelling error of subconsciously turning dead white cells (pus) into pussycats! Even though my error was pointed out, I persisted in using the wrong word, which I might like to claim was done with irony, but actually it was my blind devotion to the feline species.
Let us see if my coming posts will improve. It is in the lap of the gods.
Let us see if my coming posts will improve. It is in the lap of the gods.
Sunday 13 February 2011
Progress with the drain
I had a better night than I expected, with only two diarrhoea attacks. I woke at midnight-ish and watched an episode of Morse, and then slept till 4, and then till 6.
This morning, the orthopaedic consultant arrived with his team to check out the drain in my leg. He then proceeded to torture me by pushing on the leg to see if he could see puss moving. It was really quite painful. He also injected saline and then pulled back on the syringe to get things moving some more (called aspirating). He pronounced that the drain is working, and should be aspirated three times a day to keep the flow going (although thankfully the nurses do not do the searingly painful pushing on the wound part).
The consultant thinks that I should notice a reduction in pain after a few days, and seems pretty confident that the drain will do the trick, and we won't need surgery. This is really good news as the recovery from surgery is obviously much longer. The idea is that as the puss drains, the infected tissue will be under less pressure, and it will allow the antibiotics to start attacking the infection (which they cannot do with all the pressurised puss that is there). So, I have my fingers crossed for a quiet few days of draining puss. The consultant also said it is OK to weight bear on the leg, even with the drain. This means I can make it to the bathroom (with nursing assistance), I cannot put as much weight as I used to be able to! But no more bed pans!
The orthopaedic team promised to return tomorrow morning to check that all is going to plan.
Before I move too far away from toilet issues (you may think I am obsessed by them, and you are probably right), my diarrhoea has steadily improved all day, and I rather hope for few or even dare I hope no nocturnal movements (in all senses of the word).
It has been a busy day for visitors, so Rose took a well earned day of rest.
First in were Chris and Harriet. We had a brilliant chat about lots of things, notably Chris's recent "influencing skills" success with his neighbours and some planning permission issues. Well done Chris! We also discussed optimism versus pessimism (the old glass half full/empty). I am sure optimism is the only rational philosophy; why do a thing if you think you won't succeed? Sometimes you win, sometimes you lose of course. And sometimes you learn from losing! But I think we all agreed that the most successful couples have one of each; two pessimists or two optimists are surely a recipe for disaster of one sort or another!
Next came my brother Les, who told me about my Dad's funeral (Friday). He also sent me a brilliant picture of Dad in his chef's whites exactly as I had pictured him. We both shed a tear! He also brought me a copy of his interview for the UCL archive, which I hope to watch soon, but it is getting late already. Maybe tomorrow. Les left after a couple of hours, and Steve and Margaret arrived.
They have just got back from a holiday in South Africa (lucky so and so's), and look gloriously tanned. I bought them up to date with my highs and lows and then they filled me on what has been happening with them. It was lovely to see them; I am looking forward to visiting them In Cornwall when I am better.
I hope to have a peaceful night.
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This morning, the orthopaedic consultant arrived with his team to check out the drain in my leg. He then proceeded to torture me by pushing on the leg to see if he could see puss moving. It was really quite painful. He also injected saline and then pulled back on the syringe to get things moving some more (called aspirating). He pronounced that the drain is working, and should be aspirated three times a day to keep the flow going (although thankfully the nurses do not do the searingly painful pushing on the wound part).
The consultant thinks that I should notice a reduction in pain after a few days, and seems pretty confident that the drain will do the trick, and we won't need surgery. This is really good news as the recovery from surgery is obviously much longer. The idea is that as the puss drains, the infected tissue will be under less pressure, and it will allow the antibiotics to start attacking the infection (which they cannot do with all the pressurised puss that is there). So, I have my fingers crossed for a quiet few days of draining puss. The consultant also said it is OK to weight bear on the leg, even with the drain. This means I can make it to the bathroom (with nursing assistance), I cannot put as much weight as I used to be able to! But no more bed pans!
The orthopaedic team promised to return tomorrow morning to check that all is going to plan.
Before I move too far away from toilet issues (you may think I am obsessed by them, and you are probably right), my diarrhoea has steadily improved all day, and I rather hope for few or even dare I hope no nocturnal movements (in all senses of the word).
It has been a busy day for visitors, so Rose took a well earned day of rest.
First in were Chris and Harriet. We had a brilliant chat about lots of things, notably Chris's recent "influencing skills" success with his neighbours and some planning permission issues. Well done Chris! We also discussed optimism versus pessimism (the old glass half full/empty). I am sure optimism is the only rational philosophy; why do a thing if you think you won't succeed? Sometimes you win, sometimes you lose of course. And sometimes you learn from losing! But I think we all agreed that the most successful couples have one of each; two pessimists or two optimists are surely a recipe for disaster of one sort or another!
Next came my brother Les, who told me about my Dad's funeral (Friday). He also sent me a brilliant picture of Dad in his chef's whites exactly as I had pictured him. We both shed a tear! He also brought me a copy of his interview for the UCL archive, which I hope to watch soon, but it is getting late already. Maybe tomorrow. Les left after a couple of hours, and Steve and Margaret arrived.
They have just got back from a holiday in South Africa (lucky so and so's), and look gloriously tanned. I bought them up to date with my highs and lows and then they filled me on what has been happening with them. It was lovely to see them; I am looking forward to visiting them In Cornwall when I am better.
I hope to have a peaceful night.
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Ireland v France
If you screamed at the telly in the 78th minute when the Irish hooker (or prop) got in the way and dropped the ball then you were not alone! Jiffy has said it a thousand times before, but boy was it ever true then. Never mind Keith Wood in the studio saying if he'd caught the ball it would have been a good decision.
I did not concentrate on the whole game, but the Irish deserved to win. The French were not fantastic, and came away lucky, lucky.
A fascinating game awaits us at Twickenham in two weeks time.
I did not concentrate on the whole game, but the Irish deserved to win. The French were not fantastic, and came away lucky, lucky.
A fascinating game awaits us at Twickenham in two weeks time.
Saturday 12 February 2011
Bad leg treatment begins
Last night I actually managed to sleep a bit better; I had two 3 hour sessions between diarrhoea attacks.
This morning, Rose came nice and early, and then another bone doctor came to see me. We discussed various options, but they decided that I should have a drain put in to try and drain off the puss in the abscess. This is done by a radiologist using ultrasound to determine the place to put the drain.
At 11:00 they took me down, and a very nice doctor explained that he would use local anaesthetic to insert the drain, but of course it does not work on the abscess! So, whilst inserting the tube, it will hurt.
It was very painful, for longer than I would have liked. There is a risk that the puss is too thick, and it won't drain, but the radiologist was very upbeat and said it looked to be draining well. I was back in my room at 12:00, with a smiling Rose to greet me.
The trouble is, it was not really draining. A little bit had drained out which gave the radiologist his optimism I guess, but we could see no movement back in the room. And my leg was uncomfortable, and now I have the drain attached I am bedridden again. All in all it seemed like a step backwards.
My nurse could also see nothing was happening, so I asked her to call the bone doctor, who recommended a backwash of saline, in case there was a blockage. The nurse duly performed this, with much trepidation on my side, as I was worried it would hurt squirting saline into the abscess. But it turned out to be OK. However, nothing was draining still. Another call to the bone doctor who suggested another backwash, with a little more saline. This time, the nurse thinks it is draining; I am sceptical, but at least we have managed to get my leg to a bearable level of comfort, which is a great improvement.
They will (by protocol) leave the drain for 24 hours. The next step is surgery, if the puss does not drain. So, realistically things will stay as they are until tomorrow, and then if nothing much has drained I will hopefully be on the list for surgery on Monday.
I am almost frightened to blog it, but the diarrhoea does seem to be abating. I have my fingers crossed. It means a lot because now I have to use a bed pan, and it is not very dignified.
I now face a somewhat uncertain night, but I am in better spirits than I was earlier today. If the diarrhoea is not too bad, and if I can my leg comfortable, things might just be OK.
- Posted using BlogPress from my iPad
This morning, Rose came nice and early, and then another bone doctor came to see me. We discussed various options, but they decided that I should have a drain put in to try and drain off the puss in the abscess. This is done by a radiologist using ultrasound to determine the place to put the drain.
At 11:00 they took me down, and a very nice doctor explained that he would use local anaesthetic to insert the drain, but of course it does not work on the abscess! So, whilst inserting the tube, it will hurt.
It was very painful, for longer than I would have liked. There is a risk that the puss is too thick, and it won't drain, but the radiologist was very upbeat and said it looked to be draining well. I was back in my room at 12:00, with a smiling Rose to greet me.
The trouble is, it was not really draining. A little bit had drained out which gave the radiologist his optimism I guess, but we could see no movement back in the room. And my leg was uncomfortable, and now I have the drain attached I am bedridden again. All in all it seemed like a step backwards.
My nurse could also see nothing was happening, so I asked her to call the bone doctor, who recommended a backwash of saline, in case there was a blockage. The nurse duly performed this, with much trepidation on my side, as I was worried it would hurt squirting saline into the abscess. But it turned out to be OK. However, nothing was draining still. Another call to the bone doctor who suggested another backwash, with a little more saline. This time, the nurse thinks it is draining; I am sceptical, but at least we have managed to get my leg to a bearable level of comfort, which is a great improvement.
They will (by protocol) leave the drain for 24 hours. The next step is surgery, if the puss does not drain. So, realistically things will stay as they are until tomorrow, and then if nothing much has drained I will hopefully be on the list for surgery on Monday.
I am almost frightened to blog it, but the diarrhoea does seem to be abating. I have my fingers crossed. It means a lot because now I have to use a bed pan, and it is not very dignified.
I now face a somewhat uncertain night, but I am in better spirits than I was earlier today. If the diarrhoea is not too bad, and if I can my leg comfortable, things might just be OK.
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Rugby
I managed to watch the six nations rugby games today, and cannot resist a little review in my blog.
England were fabulous. Given the torrid time Ireland had last week, we need to remember that the Italian pack is pretty good. But they posed few problems for England today, except for a soft pushover try that we did not defend.
It is a pleasure to see an English team score so many tries. Of course Ashton was fabulous, but I really enjoyed Youngs and Flood; the best half backs we have had since Dawson/Wilkinson (who is a shadow of his former self). The drop in quality when Care and Wilko came on was all too evident. Haskell also had a blinder, and even Tindall managed to not drop the ball all the time (but wait for some real defence to flummox him).
And then, on to what I thought would be a real cracker between Wales and Scotland. After their performance against France last week, all the pundits tipped Scotland. What a joke! The first 20 minutes were cracking. Wales, and Hook in particular felt they had something to prove, and they did so in some style. But then the Scots started getting some ball ... and coughing it up every time. Wales did defend magnificently, especially with 13 men, but Scotland were risible. Only a diehard fan could have enjoyed the middle 45 minutes of this game. At one point it looked like Scotland might even get back into the game, before thankfully the Welsh killed it.
I am sure I am not the only England fan who remembers when Andy Robinson was in charge. Week after week, after losing yet another game,there he'd be telling us how well we played, how good we were and so on. I feel genuinely sorry for the Scottish fans that they must now endure the same thing!
I hope that Ireland find the courage to bounce back against France tomorrow - but the French still look good, and it will take a lot to beat them.
England were fabulous. Given the torrid time Ireland had last week, we need to remember that the Italian pack is pretty good. But they posed few problems for England today, except for a soft pushover try that we did not defend.
It is a pleasure to see an English team score so many tries. Of course Ashton was fabulous, but I really enjoyed Youngs and Flood; the best half backs we have had since Dawson/Wilkinson (who is a shadow of his former self). The drop in quality when Care and Wilko came on was all too evident. Haskell also had a blinder, and even Tindall managed to not drop the ball all the time (but wait for some real defence to flummox him).
And then, on to what I thought would be a real cracker between Wales and Scotland. After their performance against France last week, all the pundits tipped Scotland. What a joke! The first 20 minutes were cracking. Wales, and Hook in particular felt they had something to prove, and they did so in some style. But then the Scots started getting some ball ... and coughing it up every time. Wales did defend magnificently, especially with 13 men, but Scotland were risible. Only a diehard fan could have enjoyed the middle 45 minutes of this game. At one point it looked like Scotland might even get back into the game, before thankfully the Welsh killed it.
I am sure I am not the only England fan who remembers when Andy Robinson was in charge. Week after week, after losing yet another game,there he'd be telling us how well we played, how good we were and so on. I feel genuinely sorry for the Scottish fans that they must now endure the same thing!
I hope that Ireland find the courage to bounce back against France tomorrow - but the French still look good, and it will take a lot to beat them.
Friday 11 February 2011
Mixed fortunes
A strange day of mixed fortunes, mostly not so good.
The diarrhoea is the same as ever, ie terrible. Overnight, I discovered another small clot in my left arm. They say it is not serious and they will do nothing for the time being.
Now that I have discovered the bathroom, I thought I would have a bath to start the day, but before I got in I needed a wee. I passed blood! It is very painful, and I recommend you never do it!! I buzzed the nurse, and on top of this he told me that the bone doctors had showed up! The bleeding stopped quite quickly and I went back to my room to talk to the consultant. The plan is to take an ultrasound of the leg to gauge the extent of the abscess, and then probably operate. However, the ultrasound did not happen today, and I have no idea of the timetable. Of course, surgery implies nil by mouth, the complete opposite of what I am trying to do! Anyway, it was all a bit of a rush, but after they left I got my bath, and Rose arrived just as I was drying myself.
They are not sure why I passed blood. Yesterday they restarted me on blood thinners (ironic to get a clot right away), and this is one possible explanation. Another is trauma from the catheter, but since I have already passed loads overnight with no problem I am sceptical of this. Needless to say I was fearful the next time; fortunately it went OK. But later it happened again, and now every time I wee I get some blood at the end, but thankfully not painful like the full flow. How we take these things for granted! They have halved the blood thinner dose, but are determined to keep on with it. If things stay as they are it is not too bad, but I worry every time I go.
Rose came with some of her delicious home made soup, which I drank during the morning. I had quite a big lunch, including some Sushi that Rose got me from Prets. It tasted OK, but not as good as it should!
Sometimes in this blog I take Rose's visits for granted, and yesterday I did not even mention her. Let me say that I love her so much I sometimes well up thinking of her, and I would not be who I am (well or ill) if not for her fortitude, wit, love and friendship; she is the best friend I ever had, and ever will have, and this, above all, I think is the secret of our relationship.
This afternoon they did the bone marrow biopsy. It is not a very pleasant procedure. They take some fluid, and some solid. It is not too bad until they go for the solid matter. These things must be endured. The biopsy is the ultimate arbiter of whether I am in remission, and can move on to the next phase of the leukaemia treatment. Of course, my bad leg will also need to be fixed. The next week or so will tell all.
They have taken another diarrhoea sample (every 7 days) to see if some treatment might be possible rather than this laissez faire policy we have now. Speaking of which ...
No blood in wee, so a result there!
I am now in room 4, a much bigger room. The reason is that in a larger room there is less risk of airborne transfer of C-DIFF. It is OK to visit me, but now you take care that I do not infect you. As long as you don't get too close you will be OK. This room has a TV, so I paid for the weekend telly so I can see the rugby. Of course, I will probably be carted off for the ultrasound at the wrong time, but I think that would be good.
So, apart from the diarrhoea, the clot in my arm, the blood in my wee, and my bad leg, I am doing OK. Except that despite my stuffing myself as much as I can, I still lost another 2kg yesterday. My physical shape is beyond description. It is going to be a long haul back.
The diarrhoea is the same as ever, ie terrible. Overnight, I discovered another small clot in my left arm. They say it is not serious and they will do nothing for the time being.
Now that I have discovered the bathroom, I thought I would have a bath to start the day, but before I got in I needed a wee. I passed blood! It is very painful, and I recommend you never do it!! I buzzed the nurse, and on top of this he told me that the bone doctors had showed up! The bleeding stopped quite quickly and I went back to my room to talk to the consultant. The plan is to take an ultrasound of the leg to gauge the extent of the abscess, and then probably operate. However, the ultrasound did not happen today, and I have no idea of the timetable. Of course, surgery implies nil by mouth, the complete opposite of what I am trying to do! Anyway, it was all a bit of a rush, but after they left I got my bath, and Rose arrived just as I was drying myself.
They are not sure why I passed blood. Yesterday they restarted me on blood thinners (ironic to get a clot right away), and this is one possible explanation. Another is trauma from the catheter, but since I have already passed loads overnight with no problem I am sceptical of this. Needless to say I was fearful the next time; fortunately it went OK. But later it happened again, and now every time I wee I get some blood at the end, but thankfully not painful like the full flow. How we take these things for granted! They have halved the blood thinner dose, but are determined to keep on with it. If things stay as they are it is not too bad, but I worry every time I go.
Rose came with some of her delicious home made soup, which I drank during the morning. I had quite a big lunch, including some Sushi that Rose got me from Prets. It tasted OK, but not as good as it should!
Sometimes in this blog I take Rose's visits for granted, and yesterday I did not even mention her. Let me say that I love her so much I sometimes well up thinking of her, and I would not be who I am (well or ill) if not for her fortitude, wit, love and friendship; she is the best friend I ever had, and ever will have, and this, above all, I think is the secret of our relationship.
This afternoon they did the bone marrow biopsy. It is not a very pleasant procedure. They take some fluid, and some solid. It is not too bad until they go for the solid matter. These things must be endured. The biopsy is the ultimate arbiter of whether I am in remission, and can move on to the next phase of the leukaemia treatment. Of course, my bad leg will also need to be fixed. The next week or so will tell all.
They have taken another diarrhoea sample (every 7 days) to see if some treatment might be possible rather than this laissez faire policy we have now. Speaking of which ...
No blood in wee, so a result there!
I am now in room 4, a much bigger room. The reason is that in a larger room there is less risk of airborne transfer of C-DIFF. It is OK to visit me, but now you take care that I do not infect you. As long as you don't get too close you will be OK. This room has a TV, so I paid for the weekend telly so I can see the rugby. Of course, I will probably be carted off for the ultrasound at the wrong time, but I think that would be good.
So, apart from the diarrhoea, the clot in my arm, the blood in my wee, and my bad leg, I am doing OK. Except that despite my stuffing myself as much as I can, I still lost another 2kg yesterday. My physical shape is beyond description. It is going to be a long haul back.
Thursday 10 February 2011
The bone doctor called
Just a small update. The bone doctor called, and he will come back tomorrow with his consultant. It is possible they will do surgery under general anaesthetic if my doctors agree. It is all a bit early to say, but I wanted to document all developments with my bad leg as soon as possible.
To be honest, I am thrilled by the prospect of a swift cure for this 18 year old problem!
To be honest, I am thrilled by the prospect of a swift cure for this 18 year old problem!
A good day of progress
What an amazing day!
The registrar has just called round (it is 17:40) to tell me that we have got some preliminary results from the MRI scan that are very interesting. It shows that I have an abscess in my leg. The abscess can only have developed as my White cells returned, but it has every indication that my old leg injury was indeed lying dormant all these years, to flare up now! Seems like I have not lost my analytical skills eh! They will get the appropriate specialist to drain the abscess (with a needle), and then analyse the infection so that it can be treated appropriately. Unfortunately, the MRI report has still not ruled out infection in the osteochondroma, but neither does it indicate there is any. This abscess is definitely "good" news, and I will report on progress.
This morning, I had the catheter removed. I was sure that the time was right, as most of the fluid has drained from my body, and my true weight has been revealed at about 80kg - I have lost 10% of my body weight since being here. The only slight concern is that whilst the catheter is in, the bladder forgets how to communicate to the brain that you need to wee. This communication must be relearned, otherwise you bladder just fills and fills! One technique to kick things off is to have a bath; which I duly did. The most luxurious experience I have had for a very long time. During the day I think things are going to be OK; not sure yet, but I have been 3 times!
For your delectation, here is a picture of my legs. Notice how little muscle tone there is on the right - I am a wreck!
Having got rid of the catheter, my mobility is improved. I now have crutches instead of the walking frame, which is far more dignified. Now I need to do more exercise, but there is still a lot of fluid around my left foot which makes articulating it very difficult. This fluid will clear with exercise, so I need to do as much as possible.
My blood counts are all returning to normal, except my haemoglobin remains low at about 8.5. The doctor does not seem concerned though. Tomorrow they will do the bone marrow biopsy to see if I really am in remission. This is the next big hurdle on the path of the leukaemia treatment, and I desperately hope that it will be good news; but they say it will take a week before we know for sure.
The only remaining nuisance is the diarrhoea
The registrar has just called round (it is 17:40) to tell me that we have got some preliminary results from the MRI scan that are very interesting. It shows that I have an abscess in my leg. The abscess can only have developed as my White cells returned, but it has every indication that my old leg injury was indeed lying dormant all these years, to flare up now! Seems like I have not lost my analytical skills eh! They will get the appropriate specialist to drain the abscess (with a needle), and then analyse the infection so that it can be treated appropriately. Unfortunately, the MRI report has still not ruled out infection in the osteochondroma, but neither does it indicate there is any. This abscess is definitely "good" news, and I will report on progress.
This morning, I had the catheter removed. I was sure that the time was right, as most of the fluid has drained from my body, and my true weight has been revealed at about 80kg - I have lost 10% of my body weight since being here. The only slight concern is that whilst the catheter is in, the bladder forgets how to communicate to the brain that you need to wee. This communication must be relearned, otherwise you bladder just fills and fills! One technique to kick things off is to have a bath; which I duly did. The most luxurious experience I have had for a very long time. During the day I think things are going to be OK; not sure yet, but I have been 3 times!
For your delectation, here is a picture of my legs. Notice how little muscle tone there is on the right - I am a wreck!
Having got rid of the catheter, my mobility is improved. I now have crutches instead of the walking frame, which is far more dignified. Now I need to do more exercise, but there is still a lot of fluid around my left foot which makes articulating it very difficult. This fluid will clear with exercise, so I need to do as much as possible.
My blood counts are all returning to normal, except my haemoglobin remains low at about 8.5. The doctor does not seem concerned though. Tomorrow they will do the bone marrow biopsy to see if I really am in remission. This is the next big hurdle on the path of the leukaemia treatment, and I desperately hope that it will be good news; but they say it will take a week before we know for sure.
The only remaining nuisance is the diarrhoea
Thank you for your kindness
Thank you very much for all your kind wishes and condolences for my Dad. I have spent most of the intervening time reminiscing, smiling, crying a lot and generally rejoicing in the memory of a wonderful man. I never thought it would affect me quite how it has, not so much grief, as joy and wonder and love and sadness and ... the whole gamut of emotions really.
The record of his experiences during the Holocaust is captured in two archives; one by University College London, and also by the Spielberg archive. I have only recently learned some of the details of his experiences, and I am even more in awe of this remarkable man, my Dad.
So thank you once again.
The record of his experiences during the Holocaust is captured in two archives; one by University College London, and also by the Spielberg archive. I have only recently learned some of the details of his experiences, and I am even more in awe of this remarkable man, my Dad.
So thank you once again.
Wednesday 9 February 2011
Sad news on a busy day
Quite a day for me today. I scarcely know where to begin the blog, so I guess begin at the beginning ...
I am still not sleeping very well, and awoke a little groggy for breakfast. The diarrhoea is still making life a little tricky at times, as we shall see later.
Rose came to visit in the morning, and no sooner had she arrived than my brother rang with some sad news; my Dad passed away last night. He has had alzheimer's for quite a few years now, but this year his physical health also declined and I guess his death is a release. Certainly we have had time to say our goodbyes over the last few years. I have scarcely had time to even think of happy times we had, but I am sure i will find time later. His funeral is Friday; I will not be able to attend which is a shame.
I had no time to think about this because the physio arrived and got me walking and exercising! I find that I can put more and more weight on my bad leg. I can stand with my weight more or less evenly spread between both legs. Also, I can almost walk, as in bring one leg in front of the other, still using the walking frame. This seems like an amazing advance from just yesterday.
Lunch arrived, but the catering standards slipped, and the scrambled egg was overcooked. Rose took a picture for me to forward to the manager! I realised that my taste has improved enough that I can eat a packet of cheese and onion crisps! Rose popped out for more snacks, and we got by.
And then, the porters turned up to take me for my MRI scan! They had to take me down on a narrow bed, because the department has only narrow corridors. I arrived a little early for them (they were running late), and had a substantial wait. Eventually they took me in. The scan would take about half an hour they said, but it seemed like much longer. For someone with diarrhoea it was a long time to sit still!! The machine is very noisy - they give you ear defenders and you need them. I was surprised to find that I could feel a very gentle tugging as the scanner moved over my feet! I finally got back to my room after two and half hours! Even a mad dash for the bathroom did not quite save me (maybe you think this is too much detail, I say: feel my pain).
The doctors tell me that my bad leg has an osteochondroma, and the MRI scan will tell if there is any infection there. It is not possible to say if the osteochondroma was always there, or grew after the 1992 incident, but either way it is moot now. It will be good if there is no infection, as it will take a long time (years) to treat if there is.
So finally I have some free time for remembering. My Dad was a great man, with a wonderful wit and genuine love of life. He was a workaholic, and I am sure I have his work ethic strongly within me. During the war he had to endure things that we can not even begin to imagine, and yet his spirit was never bowed. I shall cherish the memories of growing up in our hotel in Margate, his undoubted culinary skill, and continuous banter both preparing and serving food. I would love to tell some more, maybe another time ...
I am still not sleeping very well, and awoke a little groggy for breakfast. The diarrhoea is still making life a little tricky at times, as we shall see later.
Rose came to visit in the morning, and no sooner had she arrived than my brother rang with some sad news; my Dad passed away last night. He has had alzheimer's for quite a few years now, but this year his physical health also declined and I guess his death is a release. Certainly we have had time to say our goodbyes over the last few years. I have scarcely had time to even think of happy times we had, but I am sure i will find time later. His funeral is Friday; I will not be able to attend which is a shame.
I had no time to think about this because the physio arrived and got me walking and exercising! I find that I can put more and more weight on my bad leg. I can stand with my weight more or less evenly spread between both legs. Also, I can almost walk, as in bring one leg in front of the other, still using the walking frame. This seems like an amazing advance from just yesterday.
Lunch arrived, but the catering standards slipped, and the scrambled egg was overcooked. Rose took a picture for me to forward to the manager! I realised that my taste has improved enough that I can eat a packet of cheese and onion crisps! Rose popped out for more snacks, and we got by.
And then, the porters turned up to take me for my MRI scan! They had to take me down on a narrow bed, because the department has only narrow corridors. I arrived a little early for them (they were running late), and had a substantial wait. Eventually they took me in. The scan would take about half an hour they said, but it seemed like much longer. For someone with diarrhoea it was a long time to sit still!! The machine is very noisy - they give you ear defenders and you need them. I was surprised to find that I could feel a very gentle tugging as the scanner moved over my feet! I finally got back to my room after two and half hours! Even a mad dash for the bathroom did not quite save me (maybe you think this is too much detail, I say: feel my pain).
The doctors tell me that my bad leg has an osteochondroma, and the MRI scan will tell if there is any infection there. It is not possible to say if the osteochondroma was always there, or grew after the 1992 incident, but either way it is moot now. It will be good if there is no infection, as it will take a long time (years) to treat if there is.
So finally I have some free time for remembering. My Dad was a great man, with a wonderful wit and genuine love of life. He was a workaholic, and I am sure I have his work ethic strongly within me. During the war he had to endure things that we can not even begin to imagine, and yet his spirit was never bowed. I shall cherish the memories of growing up in our hotel in Margate, his undoubted culinary skill, and continuous banter both preparing and serving food. I would love to tell some more, maybe another time ...
Tuesday 8 February 2011
Some taste returns
Slowly my ability to eat is returning. Today I had tuna salad for lunch and cheese and onion pasty for dinner (with mashed potatoes). Still not tasting fantastic but a bit better each day I fool myself into thinking.
I am doing a lot of sleeping, which is no bad thing I guess. The excess fluid is slowly but surely draining from my body and I am getting more movement in my bad leg. Slow and steady progress. I just hope I can have a solid few days like this without another setback. The itchy rash has subsided too.
The only cloud on the horizon is that the diarrhoea is fighting back! After a couple of quiet days it is back to real nuisance levels. They want to let it run it's course, so I just have to grin and bear it.
It is Rose's day off today, but in the afternoon I had a surprise visit from Kim! And a bit later on Chris rang and brought me up to date with some of the gossip from work.
Not much to say, and not much energy to tell stories - this is how things will hopefully progress over the coming days. Boring is good!
I am doing a lot of sleeping, which is no bad thing I guess. The excess fluid is slowly but surely draining from my body and I am getting more movement in my bad leg. Slow and steady progress. I just hope I can have a solid few days like this without another setback. The itchy rash has subsided too.
The only cloud on the horizon is that the diarrhoea is fighting back! After a couple of quiet days it is back to real nuisance levels. They want to let it run it's course, so I just have to grin and bear it.
It is Rose's day off today, but in the afternoon I had a surprise visit from Kim! And a bit later on Chris rang and brought me up to date with some of the gossip from work.
Not much to say, and not much energy to tell stories - this is how things will hopefully progress over the coming days. Boring is good!
Monday 7 February 2011
Small steps
I did not sleep very well last night and woke a little dispirited because I did not feel much progress had been made with the infection in my leg. However, when Rose arrived she thought it was a lot better, and so did the doctor when she called, and the nurses ... eventually I cheered up, especially when I noticed that I can put more weight on my bad leg than I used to be able to, which is a sign of solid progress. It is certainly easier for me to stand up than it was.
They have set my expectation that it will take two weeks in order to for the infection to clear, so I just need to knuckle down and endure. The diarrhoea is under control, and even my saliva is returning, and with it a sort of altered taste. Today I ate some savoury food for the first time in what seems forever. I cannot say I really enjoyed it, but I hope things will improve on the food front; I'll keep you posted.
I still do not have the emotional energy to read, but I can just manage to look at the crossword from time to time. If the desire to read returns, I will know things are getting better!
I have developed a slightly itchy rash, and they have given me some Piriton IV to keep on top of it. I expect this to knock me out any time now!
They have set my expectation that it will take two weeks in order to for the infection to clear, so I just need to knuckle down and endure. The diarrhoea is under control, and even my saliva is returning, and with it a sort of altered taste. Today I ate some savoury food for the first time in what seems forever. I cannot say I really enjoyed it, but I hope things will improve on the food front; I'll keep you posted.
I still do not have the emotional energy to read, but I can just manage to look at the crossword from time to time. If the desire to read returns, I will know things are getting better!
I have developed a slightly itchy rash, and they have given me some Piriton IV to keep on top of it. I expect this to knock me out any time now!
Sunday 6 February 2011
Supplemental
I messed up the original post of Saturday night, Sunday morning, and subsequently fixed it. If you receive the posts as mail, just read the second one.
Saturday night, Sunday morning
This is what happened yesterday ...
There was a small communications breakdown between the doctors and the nursing staff on Friday, with the result that I was decatheterized early on Saturday morning. Unfortunately, the onset of diarrhoea and maybe some other problem meant that I was not passing the amount fluid that had been expected during the day, indeed instead of losing fluid I was gaining it. So they decided to recatheterize me right away ... except that I was vey low on platelets, and so we needed to order some and infuse them before the procedure. The platelets duly arrived, and ...
... although the catheterisation procedure went well, there was in fact a problem that was not obvious to detect, but resulted in a greatly reduced fluid drain. I was starting to feel more and more unwell at this stage, and somewhat concerned since fluid reduction has been the goal for a few days now.
Furthermore, as the evening wore on, the problem became worse, as my bladder, and indeed the rest of me, started filling up with fluid. To make matters worse, the diarrhoea kicked in big time, and I was requiring attention every 15 minutes. It was a long evening.
We tried many things to solve the drainage problem, whilst my discomfort and bloat grew. Things were getting a little desperate, when in a eureka moment the nurse realised what the problem must be, and managed to clear the blockage. The waters literally burst through, making a very spectacular mess in the room (a litre of water is a lot of fluid). The nurses were concerned I would look and think I was bleeding out! I just lay there ... the feeling of relief my friends, cannot be overstated!
In what seemed like an amazingly short time, the nurses had cleaned the room, literally around me, and the doctors decided I should have a full course of blood product infusions (similar to before the intrathecal) to stabilise things, and then have the catheter reinserted, to allow my body to catch up and get back on track. It took a long time for the blood to be infused (just the sheer quantity), but finally at about 4:30am, a new catheter was inserted, and it has been draining away all day without stopping as far as I know. The catheter was inserted by a urology surgeon no less! A very nice chap.
Today (Sunday), I have spent most of the day sleeping. Rose came to visit, but she slept as badly as I did and also slept whilst here - this new room I am in is a lot bigger and has a sofa. The doctors called and pronounced everything to be progressing well. My bad leg is still red and swollen, but certainly less than before. The doctors are sure the antibiotics, and my own white cells (!) will soon see the back of it
To keep the diarrhoea under control, they are now administering all my antibiotics IV. It seems to be working so far, at least reduced to an annoyance rather than a life-sapping force!
As I have explained, all week I have been injected with stem cell stimulant because my chemotherapy cycle is finished. I am pleased to say that my blood counts have all been increasing, and yesterday my neutrophils recovered to "normal" - I am no longer neutropenic!
There was a small communications breakdown between the doctors and the nursing staff on Friday, with the result that I was decatheterized early on Saturday morning. Unfortunately, the onset of diarrhoea and maybe some other problem meant that I was not passing the amount fluid that had been expected during the day, indeed instead of losing fluid I was gaining it. So they decided to recatheterize me right away ... except that I was vey low on platelets, and so we needed to order some and infuse them before the procedure. The platelets duly arrived, and ...
... although the catheterisation procedure went well, there was in fact a problem that was not obvious to detect, but resulted in a greatly reduced fluid drain. I was starting to feel more and more unwell at this stage, and somewhat concerned since fluid reduction has been the goal for a few days now.
Furthermore, as the evening wore on, the problem became worse, as my bladder, and indeed the rest of me, started filling up with fluid. To make matters worse, the diarrhoea kicked in big time, and I was requiring attention every 15 minutes. It was a long evening.
We tried many things to solve the drainage problem, whilst my discomfort and bloat grew. Things were getting a little desperate, when in a eureka moment the nurse realised what the problem must be, and managed to clear the blockage. The waters literally burst through, making a very spectacular mess in the room (a litre of water is a lot of fluid). The nurses were concerned I would look and think I was bleeding out! I just lay there ... the feeling of relief my friends, cannot be overstated!
In what seemed like an amazingly short time, the nurses had cleaned the room, literally around me, and the doctors decided I should have a full course of blood product infusions (similar to before the intrathecal) to stabilise things, and then have the catheter reinserted, to allow my body to catch up and get back on track. It took a long time for the blood to be infused (just the sheer quantity), but finally at about 4:30am, a new catheter was inserted, and it has been draining away all day without stopping as far as I know. The catheter was inserted by a urology surgeon no less! A very nice chap.
Today (Sunday), I have spent most of the day sleeping. Rose came to visit, but she slept as badly as I did and also slept whilst here - this new room I am in is a lot bigger and has a sofa. The doctors called and pronounced everything to be progressing well. My bad leg is still red and swollen, but certainly less than before. The doctors are sure the antibiotics, and my own white cells (!) will soon see the back of it
To keep the diarrhoea under control, they are now administering all my antibiotics IV. It seems to be working so far, at least reduced to an annoyance rather than a life-sapping force!
As I have explained, all week I have been injected with stem cell stimulant because my chemotherapy cycle is finished. I am pleased to say that my blood counts have all been increasing, and yesterday my neutrophils recovered to "normal" - I am no longer neutropenic!
C-DIFF strikes
I must apologise for any worries I caused by not posting last night, but Saturday was a pretty traumatic experience and time was in rather short supply. I am not sure I will ever be able to find a form of words to describe in this blog how the day unfolded.
The Clindamycin I am taking causes diarrhoea, and mine is C-DIFF positive. Aside from amy other concern, they moved me to a bigger room to minimise the chance of airborne infection, i.e. me infecting someone else! The diarrhoea was/is pretty severe, requiring intervention every 10 minutes. But as ever the nursing team coped admirably.
I do not think anyone should visit whilst this situation continues.
The Clindamycin I am taking causes diarrhoea, and mine is C-DIFF positive. Aside from amy other concern, they moved me to a bigger room to minimise the chance of airborne infection, i.e. me infecting someone else! The diarrhoea was/is pretty severe, requiring intervention every 10 minutes. But as ever the nursing team coped admirably.
I do not think anyone should visit whilst this situation continues.
Friday 4 February 2011
Steady progress
Today has been a solid day of progress towards recovery, and I hope that trend will continue into weekend.
We still do not have the official radiology report from the CT and the Xray, but there is no sign of any bony infection currently. However, they think they really need an MRI scan to make sure, and have booked one. Certainly, I would like to know one way or the other in advance of another possible infection during later phases of the treatment.
During the night my excess fluids dropped sufficiently such that my lower legs and feet are no longer completely bloated and taut. Last night I was able to put weight on my left leg (albeit briefly), and so today we decided to see if I could move around by myself using a walking frame. The physio arrived, and we tried. The answer is that if I am not tethered to the IV pump I can manage, but it was quite hard work! It feels like I reached a milestone, and hopefully will get progressively easier with time.
My doctor is very keen to remove my catheter, because it is a potential source of infection, but I decided to wait until tomorrow morning to do it when a normal day shift of staff is around - I will have to house-train myself again!
As the excess fluids are draining out, I'm pleased to say that all the markers in my blood and organs are returning to normal, even the pesky creatinine level has dropped to normal! In addition, since Monday they have been injecting me with GCSF, the drug that stimulates blood stem cell production. So during the week my neutrophils, platelets and haemoglobin have been slowly recovering, as was the intention in the original chemotherapy regime. Right now I am hooked up to the last dose of Rituximab. It is nice to be able to once again think about the next real milestone in the leukaemia treatment, namely to get a good remission after the fist cycle.
I am struggling to find a form of words to describe how I feel about this past week. I feel humbled by the experience, dedication, and skill of the nursing team who cared for me. Cheering every extra point or two of blood pressure as we struggled to keep above 60 during Sunday, carrying out (what seem to me to be) complex procedures with dexterity, and sharing with me their experience of similar things that happened in the past. Though I may lack the poetry to describe my feelings, I know I shall never forget them.
We still do not have the official radiology report from the CT and the Xray, but there is no sign of any bony infection currently. However, they think they really need an MRI scan to make sure, and have booked one. Certainly, I would like to know one way or the other in advance of another possible infection during later phases of the treatment.
During the night my excess fluids dropped sufficiently such that my lower legs and feet are no longer completely bloated and taut. Last night I was able to put weight on my left leg (albeit briefly), and so today we decided to see if I could move around by myself using a walking frame. The physio arrived, and we tried. The answer is that if I am not tethered to the IV pump I can manage, but it was quite hard work! It feels like I reached a milestone, and hopefully will get progressively easier with time.
My doctor is very keen to remove my catheter, because it is a potential source of infection, but I decided to wait until tomorrow morning to do it when a normal day shift of staff is around - I will have to house-train myself again!
As the excess fluids are draining out, I'm pleased to say that all the markers in my blood and organs are returning to normal, even the pesky creatinine level has dropped to normal! In addition, since Monday they have been injecting me with GCSF, the drug that stimulates blood stem cell production. So during the week my neutrophils, platelets and haemoglobin have been slowly recovering, as was the intention in the original chemotherapy regime. Right now I am hooked up to the last dose of Rituximab. It is nice to be able to once again think about the next real milestone in the leukaemia treatment, namely to get a good remission after the fist cycle.
I am struggling to find a form of words to describe how I feel about this past week. I feel humbled by the experience, dedication, and skill of the nursing team who cared for me. Cheering every extra point or two of blood pressure as we struggled to keep above 60 during Sunday, carrying out (what seem to me to be) complex procedures with dexterity, and sharing with me their experience of similar things that happened in the past. Though I may lack the poetry to describe my feelings, I know I shall never forget them.
Thursday 3 February 2011
A day of sleeping
A strange day today. I am still trying to come to terms with my situation, to find some positives to concentrate on. Also, I have been very tired all day, falling asleep literally at the drop of a hat. The weekend obviously took a lot more out of me than I perhaps realised.
Rose came for her usual visit, but spent most of it reading to me whilst I slept. They took x-rays of my bad leg late morning, but so far I have not heard any interesting news about them.
My treatment basically now requires that all of the excess fluid in my body is expelled in the most natural way possible, ... and there is still a lot of fluid! It is the excess fluid that also causes the dry mouth that makes eating so difficult. In the meantime they are trying to ascertain if my bad leg has any bony infection, in addition to the tissue Infection. If it does they need to change the antibiotic regime accordingly. Frustratingly, no timing for how long this might take is forthcoming. So for now things are business as usual until further noticed.
The infection at the weekend was made by e-coli. When my temperature spiked on Tuesday, they took blood cultures and did not find any other bacterium. It is quite common for the body to do this apparently, and my body temperature is steady at about 38 or just under, so nobody seems overly concerned. They take cultures periodically and keep growing them to see if anything new turns up that might upset the balance of the antibiotics.
The physio came round with some bed exercises, that I will try my best to perform.
Rose came for her usual visit, but spent most of it reading to me whilst I slept. They took x-rays of my bad leg late morning, but so far I have not heard any interesting news about them.
My treatment basically now requires that all of the excess fluid in my body is expelled in the most natural way possible, ... and there is still a lot of fluid! It is the excess fluid that also causes the dry mouth that makes eating so difficult. In the meantime they are trying to ascertain if my bad leg has any bony infection, in addition to the tissue Infection. If it does they need to change the antibiotic regime accordingly. Frustratingly, no timing for how long this might take is forthcoming. So for now things are business as usual until further noticed.
The infection at the weekend was made by e-coli. When my temperature spiked on Tuesday, they took blood cultures and did not find any other bacterium. It is quite common for the body to do this apparently, and my body temperature is steady at about 38 or just under, so nobody seems overly concerned. They take cultures periodically and keep growing them to see if anything new turns up that might upset the balance of the antibiotics.
The physio came round with some bed exercises, that I will try my best to perform.
Wednesday 2 February 2011
I am bedridden
I did not have such a good nights sleep as I had hoped, but this afternoon I managed a solid few hours and I am hopeful to catch up some more tonight. During the night I had a temperature spike (over 38), indicating my body thinks there is another infection. I was concerned, but since all the other observations were normal, including BP, the nurses told me not to worry. My temperature has stayed at this elevated level most of the day.
When the spike is detected, the nurses immediately take blood for a culture, to see if any new bacterium are present that the current antibiotic regime does not cover. We should get the results of this culture tomorrow.
I have realised why my appetite has gone; it is because I have no saliva! Imagine every meal you eat dished up as a plate of soil. So I have caved to the enshakes model for both meals. Rose had some constructive ideas during her visit today, that I will also try.
Tomorrow I will finally get that last dose of Rituximab that was due on Tuesday. They delayed it because it can lower BP. They have already started injecting me with stem cell growth hormone to regenerate the blood counts, which is the standard practice at the end of the first chemotherapy cycle. In other words, the chemotherapy schedule and fighting this infection do have some overlapping paths. Another plus is that I will slowly get some neutrophils of my own to fight future infections.
My focus at the moment is my bad leg. If I did not have this, life would be much more bearable. However as things stand I am bedridden, with all the discomfort and lack of dignity that goes with it. They sent me for an ultrasound of the leg to check for clots, none were found. I have a feeling that not much can be done until the fluid has drained a bit more, and legs/feet are the last places to go. However, since it affects my quality of life so much, I intend to keep nagging the doctors about it. I think they should redo the CT scan, and I will suggest it tomorrow.
It has been a good day for visitors. Rose came nice and early, and I was helped out of bed by a nurse and sat in the arm chair for most of her visit. This just gives the normal pressure points that support my body a break. Later on Andrew popped in. We met playing bridge, and have been playing on and off for over 25 years! I showed him the BridgeBaron. I think he liked it. Whilst Andrew was here, Babbs dropped in for a surprise visit.
Now everyone is gone, it is just me and the gammy leg! I am currently hooked up to some IV calcium, and when it is disconnected I will try and get some sleep.
When the spike is detected, the nurses immediately take blood for a culture, to see if any new bacterium are present that the current antibiotic regime does not cover. We should get the results of this culture tomorrow.
I have realised why my appetite has gone; it is because I have no saliva! Imagine every meal you eat dished up as a plate of soil. So I have caved to the enshakes model for both meals. Rose had some constructive ideas during her visit today, that I will also try.
Tomorrow I will finally get that last dose of Rituximab that was due on Tuesday. They delayed it because it can lower BP. They have already started injecting me with stem cell growth hormone to regenerate the blood counts, which is the standard practice at the end of the first chemotherapy cycle. In other words, the chemotherapy schedule and fighting this infection do have some overlapping paths. Another plus is that I will slowly get some neutrophils of my own to fight future infections.
My focus at the moment is my bad leg. If I did not have this, life would be much more bearable. However as things stand I am bedridden, with all the discomfort and lack of dignity that goes with it. They sent me for an ultrasound of the leg to check for clots, none were found. I have a feeling that not much can be done until the fluid has drained a bit more, and legs/feet are the last places to go. However, since it affects my quality of life so much, I intend to keep nagging the doctors about it. I think they should redo the CT scan, and I will suggest it tomorrow.
It has been a good day for visitors. Rose came nice and early, and I was helped out of bed by a nurse and sat in the arm chair for most of her visit. This just gives the normal pressure points that support my body a break. Later on Andrew popped in. We met playing bridge, and have been playing on and off for over 25 years! I showed him the BridgeBaron. I think he liked it. Whilst Andrew was here, Babbs dropped in for a surprise visit.
Now everyone is gone, it is just me and the gammy leg! I am currently hooked up to some IV calcium, and when it is disconnected I will try and get some sleep.
Tuesday 1 February 2011
Some rest and recuperation
Today has been a good day. I slept more then I would expect last night, hooked up to oxygen (bit stil only 2-3 hours). This morning the nurse helped me to get out of bed into the chair, and I was able to have a little wash and change of pyjamas. One consequence of sitting up straight is that it helps the fluid drain from the lungs. Of course the downside is it also flows to your feet, ankles, legs. My legs became very tight.
Harry came to visit, but halfway through I thought it would be better to get back in bed, so the fluids were a bit more balanced around the body.I was still able to breath with just the nose mask, and in fact right now I have no oxygen assistance. When Harry left I managed 2-3 hours of quality sleep whilst lying back. Once the blog entry is finished, I may try same thing again now! I still feel exhausted.
The ongoing strategy is to complete the annihilation of the bug, drain the fluids, keep BP at least 100/60, and then see about the left leg. I am very low in strength, but I think if I had both legs now I could walk by myself (remember I am an optimist!). As it is I am totally reliant on nursing care and the buzzer.
Today was definitely a rest and recuperation day. I hope the transition to the night shift is as good as yesterday.
One of the casualties of the incident is my appetite. I am having trouble with the food taste, even the pea curry. I hope things will improve as I get my nausea contol program back in shape. As I write, I only managed a third of my dinner. I will top up on enshakes.
Harry came to visit, but halfway through I thought it would be better to get back in bed, so the fluids were a bit more balanced around the body.I was still able to breath with just the nose mask, and in fact right now I have no oxygen assistance. When Harry left I managed 2-3 hours of quality sleep whilst lying back. Once the blog entry is finished, I may try same thing again now! I still feel exhausted.
The ongoing strategy is to complete the annihilation of the bug, drain the fluids, keep BP at least 100/60, and then see about the left leg. I am very low in strength, but I think if I had both legs now I could walk by myself (remember I am an optimist!). As it is I am totally reliant on nursing care and the buzzer.
Today was definitely a rest and recuperation day. I hope the transition to the night shift is as good as yesterday.
One of the casualties of the incident is my appetite. I am having trouble with the food taste, even the pea curry. I hope things will improve as I get my nausea contol program back in shape. As I write, I only managed a third of my dinner. I will top up on enshakes.
The lost weekend
The bacterium that attacked me is most probably a "gram negative rod". These live quite harmlessly in our guts, but not when one is neutropenic! They gave me a right good going-over! At the first attack they treated it with two broad spectrum antibiotics (they don't get to know what they are dealing with until blood cultures are done, which takes hours). That first Saturday night was just a survival regime. As well as the rigor, the most serious effect is the lowered BP - no blood, no life! So they pump you full of fluids, and expanding jello, and goodness knows what, to try and keep a vestige of BP. The bad news is that as the bacteria multiply, they release gasses and other waste substances that both dilate and weaken the blood vessel walls, making it into a real race. The fluids pumped in wind up festering in any open spaces they can find; belly legs, abdomen, lungs. When BP strengthens, and the infection is under control, these fluids are eventually flushed by the body in the normal way, which is why a catheter is essential.
The hospital ITU team were heavily involved. They have an outreach team to both help treat and identify potential patients, so they can manage their resources. I was impressed with them (as indeed I am with the whole staff). As I mentioned in the preview, my left leg was really sore on the Saturday, and during the course of Sunday I started my campaign to make sure that all doctors treating me were aware of the history. It was a combination of the ITU night doctor (who took most notice) and the weekend overnight on-call haematology doctor who booked a CT scan at 4am on Sunday! I mention here in passing that I knew I was in trouble as at one stage all 3 doctors who might have had an interest in me were around my bed! Although the CT scan was inconclusive, we also added a third antibiotic to my drug regime, that is good at penetrating tissue, in the hope that it will help my left leg; the trip to the CT scanner was hair raising. Interestingly, UCH overnight radiology consultants are in Australia! (makes perfect sense) For the medically minded, after identifying the bug, I get two antibiotics; Meropenem and Clindamycin. One of the original broad-spectrum antibiotics was not considered necessary. One of the more interesting procedures they did is take blood from an artery. It is a whole other ballgame to venal blood. The arteries are buried from view for example, not sitting proudly under the skin! It hurt quite a lot!
Having survived the initial onslaught (I may be overstating that), Sunday was devoted to stabilisation (aka the fluid race). My BP steadily climbed, to reach 90/50 by about 8pm. However, as the night shift progressed, it dropped back to around 75/45, and I felt we had reached a stalemate. Ultimately, the extra weapon we have is the antibiotics of course ... Which was adjusted on identification of the bacterium. During the course of Monday, my BP recovered, and Stabilised to 100/60. I was a little nervous that it would not hold like last time, but it has, so I think the infection is well on the way to being beaten. I am still pretty bloated with fluids (8 litres or about 18 pounds weight), especially in both legs, ams still have great pain in the left leg. These will become the focus for today I hope. There is one other small problem, my blood is not carrying enough oxygen, so I was hooked up to an oxygen mask all night (still wearing it). I need more oxygen than those little nose based onces can give. This is because there is a lot of fluid I'm my lungs, impeding breathing. It makes receiving visitors very difficult!
And of course we must remember the whole thing is just a side show! It is likely that it will delay the leukaemia treatment schedule by a few days.
The hospital ITU team were heavily involved. They have an outreach team to both help treat and identify potential patients, so they can manage their resources. I was impressed with them (as indeed I am with the whole staff). As I mentioned in the preview, my left leg was really sore on the Saturday, and during the course of Sunday I started my campaign to make sure that all doctors treating me were aware of the history. It was a combination of the ITU night doctor (who took most notice) and the weekend overnight on-call haematology doctor who booked a CT scan at 4am on Sunday! I mention here in passing that I knew I was in trouble as at one stage all 3 doctors who might have had an interest in me were around my bed! Although the CT scan was inconclusive, we also added a third antibiotic to my drug regime, that is good at penetrating tissue, in the hope that it will help my left leg; the trip to the CT scanner was hair raising. Interestingly, UCH overnight radiology consultants are in Australia! (makes perfect sense) For the medically minded, after identifying the bug, I get two antibiotics; Meropenem and Clindamycin. One of the original broad-spectrum antibiotics was not considered necessary. One of the more interesting procedures they did is take blood from an artery. It is a whole other ballgame to venal blood. The arteries are buried from view for example, not sitting proudly under the skin! It hurt quite a lot!
Having survived the initial onslaught (I may be overstating that), Sunday was devoted to stabilisation (aka the fluid race). My BP steadily climbed, to reach 90/50 by about 8pm. However, as the night shift progressed, it dropped back to around 75/45, and I felt we had reached a stalemate. Ultimately, the extra weapon we have is the antibiotics of course ... Which was adjusted on identification of the bacterium. During the course of Monday, my BP recovered, and Stabilised to 100/60. I was a little nervous that it would not hold like last time, but it has, so I think the infection is well on the way to being beaten. I am still pretty bloated with fluids (8 litres or about 18 pounds weight), especially in both legs, ams still have great pain in the left leg. These will become the focus for today I hope. There is one other small problem, my blood is not carrying enough oxygen, so I was hooked up to an oxygen mask all night (still wearing it). I need more oxygen than those little nose based onces can give. This is because there is a lot of fluid I'm my lungs, impeding breathing. It makes receiving visitors very difficult!
And of course we must remember the whole thing is just a side show! It is likely that it will delay the leukaemia treatment schedule by a few days.
The story of Ian's left leg
This is a bit of background context you need to have before the next post. When younger, I had a benign cyst on my left leg, about 2 inches below the knee just to the left side of the shin bone. Between 1990 and 1993, we were living in France, where most of this story takes place. The phrases below that I shall never forget were actually in French; I translated them to save you using Google.
One day in the autumn of 1992 I was playing squash with a surgeon named Louai Elayoubi (very nice chap), and when were finished he pointed at the cyst and said to me "I'll cut that off for you if you want - the state will pay" (and they did BTW). The following week he kept his promise, and removed the cyst under local anaesthesia. "Use a cane for the first week, and after 2 weeks go to your doctor and have the stitches removed" said Louai, "and ease gently back into squash". To this day I believe he did an excellent job.
Two weeks later I presented at my local Medecin General and she said to me "what a beautiful piece of work, there won't even be a scar". She then removed the stitches, but broke the skin in the process. "It's not serious" she said, "leave to heal in the open air" ...
Two days later I was in ambulance that she called being rushed to my local hospital. The wound had become sceptic, infected big time. The A&E doctor widened out the wound (now there's gonna be a scar eh), and said "this is going to hurt; quite a lot". It did. Then he said "we probably killed most of it, but we cannot be sure, so we cannot close the wound. It must kept open until no pus is visible". The skin is kept separated by roll of gauze inside the mouth of the wound, and a dressing applied on top. Periodically, one removes the dressing and gauze, examines for and cleans away any pus, and then repeats at elongating periods. For the next three months I was on crutches! No weight allowed on wounded leg. We actually moved back to England whilst I was in this state. I think overall it was 6 or 8 months until (the now English ) doctor pronounced there was no infection left, and the closed the wound, after three consecutive weekly clear inspections.
Until now it was both the worst mistake I ever made - to have the cyst removed, and the worst health incident I had the displeasure to endure. Until last Saturday, I had no problem with the leg at all.
One day in the autumn of 1992 I was playing squash with a surgeon named Louai Elayoubi (very nice chap), and when were finished he pointed at the cyst and said to me "I'll cut that off for you if you want - the state will pay" (and they did BTW). The following week he kept his promise, and removed the cyst under local anaesthesia. "Use a cane for the first week, and after 2 weeks go to your doctor and have the stitches removed" said Louai, "and ease gently back into squash". To this day I believe he did an excellent job.
Two weeks later I presented at my local Medecin General and she said to me "what a beautiful piece of work, there won't even be a scar". She then removed the stitches, but broke the skin in the process. "It's not serious" she said, "leave to heal in the open air" ...
Two days later I was in ambulance that she called being rushed to my local hospital. The wound had become sceptic, infected big time. The A&E doctor widened out the wound (now there's gonna be a scar eh), and said "this is going to hurt; quite a lot". It did. Then he said "we probably killed most of it, but we cannot be sure, so we cannot close the wound. It must kept open until no pus is visible". The skin is kept separated by roll of gauze inside the mouth of the wound, and a dressing applied on top. Periodically, one removes the dressing and gauze, examines for and cleans away any pus, and then repeats at elongating periods. For the next three months I was on crutches! No weight allowed on wounded leg. We actually moved back to England whilst I was in this state. I think overall it was 6 or 8 months until (the now English ) doctor pronounced there was no infection left, and the closed the wound, after three consecutive weekly clear inspections.
Until now it was both the worst mistake I ever made - to have the cyst removed, and the worst health incident I had the displeasure to endure. Until last Saturday, I had no problem with the leg at all.
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