After Hilla's comment I would have liked to have written this post in some obscure tense, but alas my grammar is not up to it.
I think that the worst of the infection is over, but we have to make some corrections to blood gasses that were knocked during the infection. I am still short of breath, and my pulse is in the 90's, but my BP and temperature are stable.
I have not had much sleep these last two days, so once again I find myself unable to blog the blog. I will add details as I become stronger. In the meantime, here are some highlights, and lowlights of the weekend:
- I have been catheterised. Wikipedia has the details. It was not pleasant, but life would be impossible without it.
- In the small hours of Sunday, I told every doctor who spoke to me (5 I think) the story of "my infected left leg in 1992/1993". At first they brushed it aside, but finally that they did an out hours CT scan at 4am. UCH have consultant radiologists on call throughout the night - based in Australia!
- During the infection, my BP crashed to 60/30, and the worst rigor ever! (look at the medical definition). I am lucky my normal is quite low at 110/60.
- Rose baked a Tarte Alsatienne that was delicious.
- I have used a commode chair; not very dignifying!
Monday 31 January 2011
Sunday 30 January 2011
Infection
It is a tsunami. It crashed the shoreline last night at about 2am. Let us hope my house was built on a hill that is high enough ...
... and of course that the antibiotics do the business! Currently the doctors say I am "improving".
I hope to tell the tale in the near future.
... and of course that the antibiotics do the business! Currently the doctors say I am "improving".
I hope to tell the tale in the near future.
Saturday 29 January 2011
An allergic reaction overnight
Last night I had quite a troubled night. I was on a drip until about 2am, and then they disconnected me, but I could not get comfortable. I noticed a growing dull pain just by my left shin, and called a nurse to ask the on-call registrar to take a look. Whilst the nurse and I were discussing things, I also noticed that my face and neck felt a bit swollen. I took some pain killers for the leg, and tried to sleep, but could not, and the doctor never showed anyway, until about 8:30. By this time my face had swollen a lot, and the skin was very bloated. You would not have recognised me (I did not recognise me). It was clearly an allergic reaction to one of the drugs, similar to a week ago but much more intense. They gave some antihistamine and steroid IV, and through the day the swelling died down I am pleased to say. Now we need to find out which drug causes it - the smart money is on the Glivec, because my dosage was recently increased. To be safe, I am skipping the Glivec today, and l'll have the next one at breakfast (it is taken with meals). That way, if I do react the full day-shift team will be present to look after me.
As part of the treatment, just to be on the safe side, I was hooked up to a nebulizer to open my airways. It was not really needed, but it was a bizarre experience. Whilst the mask was on, Rose arrived, and got to see how bloated my face was. We listened to the tennis (well done Klijsters), finished off the crossword, and had a very pleasant time. As a somewhat delayed effect, the IV Piriton went straight to my eyelids, and I had a power nap whilst Rose watched a large crane assembled, used to lift a large block to a roof, and then disassembled and driven away! Rose also brought in the camera, so that I could photograph the different meals I ordered. Lunch arrived ...
They made a special effort for me for lunch (which was not the point really), but even so the 3rd party meal was still the one I chose to eat. Rose also taste tested, and was more complimentary about the normal meal. Dinner was slightly better, so I think they are at least making an effort. I will email my findings to the catering manager, and make spot-check orders randomly to see that they keep the standards. Of course, such a check might only prove they have a process in place just for me!! I think he should conduct regular satisfaction surveys, but I am too weary to make another suggestion.
Just as Rose was leaving I noticed the pain in my shin again. I have just talked to the doctor about it, and she thinks it is not serious, and I should take painkillers as necessary, but the symptoms have been documented now in case it changes in some way. Not 100% reassuring, but I am cool.
After Rose left I had a nap (in the company of Radiohead's The Bends), and then spent the afternoon playing bridge. I guess gaming can be addictive eh! It bids and plays a little too hung-ho for my liking, but then again, I am not doing very well against it either.
After the excitement of this morning, the rest of the day has been calm on the treatment front. I am currently receiving saline with added calcium (I also take chewy calcium tablets) because the steroids weaken your bones as well as muscles. I do not know if I will be tethered to the IV pump overnight.
I leave you with a few images of our house in France, where I spend the summer working. Unlike this Collioure apartment this one is financed by good old hard work and bank loans! It is in a village about 10km from the coast, nestling in the Albères. You see it as it was in Sumer 2009
The front of the house is on the left of the picture this shows the patio.
Note the beautiful breeze block wall we had done. One day we'll even have it rendered! The house is on the edge of an 80's estate; "très solide" as they say. Not everyone's romantic getaway maybe, but it suits us perfectly.
This is along the front of the house. Then pool is small (6m long, 3m wide) with a swimming pump so we can fool ourselves we might take some exercise.
And here is my office.
You can see it is built into the eaves. There is headroom for me to stand and walk between the desk and the back wall, in front of the desk is low!
- Posted using BlogPress from my iPad
As part of the treatment, just to be on the safe side, I was hooked up to a nebulizer to open my airways. It was not really needed, but it was a bizarre experience. Whilst the mask was on, Rose arrived, and got to see how bloated my face was. We listened to the tennis (well done Klijsters), finished off the crossword, and had a very pleasant time. As a somewhat delayed effect, the IV Piriton went straight to my eyelids, and I had a power nap whilst Rose watched a large crane assembled, used to lift a large block to a roof, and then disassembled and driven away! Rose also brought in the camera, so that I could photograph the different meals I ordered. Lunch arrived ...
They made a special effort for me for lunch (which was not the point really), but even so the 3rd party meal was still the one I chose to eat. Rose also taste tested, and was more complimentary about the normal meal. Dinner was slightly better, so I think they are at least making an effort. I will email my findings to the catering manager, and make spot-check orders randomly to see that they keep the standards. Of course, such a check might only prove they have a process in place just for me!! I think he should conduct regular satisfaction surveys, but I am too weary to make another suggestion.
Just as Rose was leaving I noticed the pain in my shin again. I have just talked to the doctor about it, and she thinks it is not serious, and I should take painkillers as necessary, but the symptoms have been documented now in case it changes in some way. Not 100% reassuring, but I am cool.
After Rose left I had a nap (in the company of Radiohead's The Bends), and then spent the afternoon playing bridge. I guess gaming can be addictive eh! It bids and plays a little too hung-ho for my liking, but then again, I am not doing very well against it either.
After the excitement of this morning, the rest of the day has been calm on the treatment front. I am currently receiving saline with added calcium (I also take chewy calcium tablets) because the steroids weaken your bones as well as muscles. I do not know if I will be tethered to the IV pump overnight.
I leave you with a few images of our house in France, where I spend the summer working. Unlike this Collioure apartment this one is financed by good old hard work and bank loans! It is in a village about 10km from the coast, nestling in the Albères. You see it as it was in Sumer 2009
The front of the house is on the left of the picture this shows the patio.
Note the beautiful breeze block wall we had done. One day we'll even have it rendered! The house is on the edge of an 80's estate; "très solide" as they say. Not everyone's romantic getaway maybe, but it suits us perfectly.
This is along the front of the house. Then pool is small (6m long, 3m wide) with a swimming pump so we can fool ourselves we might take some exercise.
And here is my office.
You can see it is built into the eaves. There is headroom for me to stand and walk between the desk and the back wall, in front of the desk is low!
- Posted using BlogPress from my iPad
Friday 28 January 2011
Rose brings a DAB radio
I passed a restless night, hooked up to a saline drip via the cannula. I blocked the left side of the bed to make sure I got out on the right!
The phlebotomist arrived to take blood, and sadly she made a right mess of my arm:( I do not know how they are going to manage taking blood everyday if things don't improve. Still, musn't grumble eh!
Chris rang about 9, to tell me that he has a cold and would not be visiting this week. However, we had to cut short our call because the consultant arrived for his bi-weekly round, and we mostly discussed the clot and the PICC removal. He said that for this cycle we will not insert a new PICC, but most probably would for the next cycle. The cannula will be moved around to avoid stressing one vein. It will take a few days for the clot to completely go from my left arm; I wait with bated breath.
Rose arrived nice and early, armed with a gift; a remote controlled DAB radio (which I gave her for Christmas a couple of years ago). She plugged it in and we listened to Andy Murray's match against Ferrer on 5-Live. What a genius that Rose is. Well done Murray; I will be listening to the final. We also went on to finish the crossword (apart from two silly words nobody would ever had heard of).
(For my non-UK followers, Digital Audio Broadcast is UK nationwide digital radio)
Whilst Rose was here, the catering manager came in to talk along with the head chef. He had obviously been forwarded my email from PALS, and equally obviously failed to understand my criticisms. He thought I wanted more choice, whereas it is quality of ingredients, preparation and delivery that are sadly wanting. I think I managed to explain this, and he asked me to try the main menu again as they think they made some improvements. So, tomorrow I have ordered two meals for lunch and dinner; one I expect to eat ... and an option from the main menu. Rose is going to bring the camera tomorrow so I can take some pictures, and I have the catering managers's email address. I am sure this will not end here (but you never know, maybe they have improved). As an aside, I had Kosher veggie lunch, and Halal veggie dinner. This looks like a good combination (on a number of levels I suppose). Interestingly, the Kosher portions are a bit too big for me in the state I am in!
At 2pm they came to take me for the ultrasound of my kidneys, so Rose left. This was in a different ultrasound suite to yesterday, much busier, and somewhat overrun. I was gone for almost 2 hours (in a mask of course), but the actual scan took no more than ten minutes! Fortunately, there were no problems found, so it means it is the chemotherapy that is causing the problems. Talking of which, I have just had my last (for this cycle) chemotherapy dose of Daunurubicin and Vincristine. I am currently hooked up to saline, but I think it may finish by 10pm giving me an untethered night (but this may just be wishful thinking).
As my muscle tone heads south, I have asked to see the physio, and she is supposed to come on Monday. I am not very disciplined at exercise regimes, but maybe the parlour state of my body will spur me on.
A copy of Cryptonomicon sits looking coyly at me on the windowsill. It is such a huge book! If it were an e-book it would not be quite so daunting! At some point I must pick it up, but I worry my arms are not strong enough!
The phlebotomist arrived to take blood, and sadly she made a right mess of my arm:( I do not know how they are going to manage taking blood everyday if things don't improve. Still, musn't grumble eh!
Chris rang about 9, to tell me that he has a cold and would not be visiting this week. However, we had to cut short our call because the consultant arrived for his bi-weekly round, and we mostly discussed the clot and the PICC removal. He said that for this cycle we will not insert a new PICC, but most probably would for the next cycle. The cannula will be moved around to avoid stressing one vein. It will take a few days for the clot to completely go from my left arm; I wait with bated breath.
Rose arrived nice and early, armed with a gift; a remote controlled DAB radio (which I gave her for Christmas a couple of years ago). She plugged it in and we listened to Andy Murray's match against Ferrer on 5-Live. What a genius that Rose is. Well done Murray; I will be listening to the final. We also went on to finish the crossword (apart from two silly words nobody would ever had heard of).
(For my non-UK followers, Digital Audio Broadcast is UK nationwide digital radio)
Whilst Rose was here, the catering manager came in to talk along with the head chef. He had obviously been forwarded my email from PALS, and equally obviously failed to understand my criticisms. He thought I wanted more choice, whereas it is quality of ingredients, preparation and delivery that are sadly wanting. I think I managed to explain this, and he asked me to try the main menu again as they think they made some improvements. So, tomorrow I have ordered two meals for lunch and dinner; one I expect to eat ... and an option from the main menu. Rose is going to bring the camera tomorrow so I can take some pictures, and I have the catering managers's email address. I am sure this will not end here (but you never know, maybe they have improved). As an aside, I had Kosher veggie lunch, and Halal veggie dinner. This looks like a good combination (on a number of levels I suppose). Interestingly, the Kosher portions are a bit too big for me in the state I am in!
At 2pm they came to take me for the ultrasound of my kidneys, so Rose left. This was in a different ultrasound suite to yesterday, much busier, and somewhat overrun. I was gone for almost 2 hours (in a mask of course), but the actual scan took no more than ten minutes! Fortunately, there were no problems found, so it means it is the chemotherapy that is causing the problems. Talking of which, I have just had my last (for this cycle) chemotherapy dose of Daunurubicin and Vincristine. I am currently hooked up to saline, but I think it may finish by 10pm giving me an untethered night (but this may just be wishful thinking).
As my muscle tone heads south, I have asked to see the physio, and she is supposed to come on Monday. I am not very disciplined at exercise regimes, but maybe the parlour state of my body will spur me on.
A copy of Cryptonomicon sits looking coyly at me on the windowsill. It is such a huge book! If it were an e-book it would not be quite so daunting! At some point I must pick it up, but I worry my arms are not strong enough!
Thursday 27 January 2011
A setback
Today I suffered a setback, but hopefully it will not lead me too far from the path ...
Yesterday my left arm started swelling, and it got worse today. This is the arm where the PICC line enters. When the doctor saw it, she sent me for an ultrasound to see if there is a clot, and unfortunately there is. The clot is above the PICC line entry point (with another superficial clot lower down on my forearm). So they are going to remove the PICC line today. In order to do this safely, I need platelets so that the wound will heal, and I am getting these as I write. Once the PICC line is out, they will take blood, analyse it, and dose me with the appropriate amount of anti-coagulant (fragmin). This should clear the clot.
The PICC line is out.
With the PICC line out, IV is administered via a cannula, now attached to my right wrist. The cannula can only go inwards, so to take blood I am back to the needle in the vein. And they take blood at least once a day! Furthermore, before the clot is dealt with, they can only use my right arm. It is a shame the PICC did not last, and my arms will be like pin-cushions, but as long as the road leads to remission it has to be worth it. One other minor irritation is that the cannula is on my right, but the open space in the room is to the left of the bed. However when the clot is gone, we can either rehost the cannula in my left arm, or it might be the doctors think another PICC line is worth inserting, but this time it would be in my right arm. I will keep you posted.
The ultrasound experience was not great, because I had to leave my room. They gave me a mask, but I still was a bit nervous. And there was a screw up with the porters such that I waited over half an hour before they brought me back.
My kidney creatinine level is still a cause for concern, so in addition to the overnight saline drip, they have booked an ultrasound of my kidney to make sure it is just the chemotherapy that is causing it, and not some other underlying condition. This should happen tomorrow.
Last night I wrote a long email to the Patient Advisory Liaison Service (PALS) about the catering. They are supposed to connect me to the appropriate admin. As yet, no reply.
Rose came to visit at her usual time, armed with her laptop. She downloaded album covers for most of our albums and we sync'd to the iPad. In addition, I now have all our photos on here; still got 45G free! Whilst Rose was here, we got a request to review a new leaflet they are writing about the risks of refusing blood transfusions. Both Rose and I read and critiqued it, and I gave it back this evening. I think the author probably got more feedback than they were expecting! We also made a breakthrough on a crossword that has been festering for a few days, and watched an episode of The Office together on the DVD player. Our sharing a common experience was like a comforting return to normality for a few minutes.
Rose left when I went for the ultrasound. Back in my room, I was feeling a bit glum about it, but then John rang and the call cheered me up, as I finally managed to get my perspective back. Nobody said it was going to be easy!
Interestingly, although my mouth is sore, I can still comfortably eat curry (whereas salty things are uncomfortable); I hope this continues.
I am now waiting for the blood results and follow on treatment for the clot, which they assure me will happen today. The fastest turnaround I ever had for blood in here was 3 hours, so it will be a late night!
Yesterday my left arm started swelling, and it got worse today. This is the arm where the PICC line enters. When the doctor saw it, she sent me for an ultrasound to see if there is a clot, and unfortunately there is. The clot is above the PICC line entry point (with another superficial clot lower down on my forearm). So they are going to remove the PICC line today. In order to do this safely, I need platelets so that the wound will heal, and I am getting these as I write. Once the PICC line is out, they will take blood, analyse it, and dose me with the appropriate amount of anti-coagulant (fragmin). This should clear the clot.
The PICC line is out.
With the PICC line out, IV is administered via a cannula, now attached to my right wrist. The cannula can only go inwards, so to take blood I am back to the needle in the vein. And they take blood at least once a day! Furthermore, before the clot is dealt with, they can only use my right arm. It is a shame the PICC did not last, and my arms will be like pin-cushions, but as long as the road leads to remission it has to be worth it. One other minor irritation is that the cannula is on my right, but the open space in the room is to the left of the bed. However when the clot is gone, we can either rehost the cannula in my left arm, or it might be the doctors think another PICC line is worth inserting, but this time it would be in my right arm. I will keep you posted.
The ultrasound experience was not great, because I had to leave my room. They gave me a mask, but I still was a bit nervous. And there was a screw up with the porters such that I waited over half an hour before they brought me back.
My kidney creatinine level is still a cause for concern, so in addition to the overnight saline drip, they have booked an ultrasound of my kidney to make sure it is just the chemotherapy that is causing it, and not some other underlying condition. This should happen tomorrow.
Last night I wrote a long email to the Patient Advisory Liaison Service (PALS) about the catering. They are supposed to connect me to the appropriate admin. As yet, no reply.
Rose came to visit at her usual time, armed with her laptop. She downloaded album covers for most of our albums and we sync'd to the iPad. In addition, I now have all our photos on here; still got 45G free! Whilst Rose was here, we got a request to review a new leaflet they are writing about the risks of refusing blood transfusions. Both Rose and I read and critiqued it, and I gave it back this evening. I think the author probably got more feedback than they were expecting! We also made a breakthrough on a crossword that has been festering for a few days, and watched an episode of The Office together on the DVD player. Our sharing a common experience was like a comforting return to normality for a few minutes.
Rose left when I went for the ultrasound. Back in my room, I was feeling a bit glum about it, but then John rang and the call cheered me up, as I finally managed to get my perspective back. Nobody said it was going to be easy!
Interestingly, although my mouth is sore, I can still comfortably eat curry (whereas salty things are uncomfortable); I hope this continues.
I am now waiting for the blood results and follow on treatment for the clot, which they assure me will happen today. The fastest turnaround I ever had for blood in here was 3 hours, so it will be a late night!
Wednesday 26 January 2011
A short review of The Year of the Flood by Margeret Atwood
This is a really brilliant book. It is not a sequel to the equally excellent Oryx and Crake, more of a companion, giving greater insight into the dystopian future world she creates; I wish I had reread Oryx and Crake before reading this.
Atwood's style is engaging, and intelligently written (I am biased - I have read quite a few of her books). She has a great ability to weave wit and poignancy together. As I progressed through the book, I found it harder and harder to put down.
I thoroughly recommend you all to read both books, starting of course with Oryx and Crake.
Atwood's style is engaging, and intelligently written (I am biased - I have read quite a few of her books). She has a great ability to weave wit and poignancy together. As I progressed through the book, I found it harder and harder to put down.
I thoroughly recommend you all to read both books, starting of course with Oryx and Crake.
Professor Khwaja calls
Today I really started noticing the effects that the treatment is having on my body. My muscle tone is disappearing fast (especially calf muscles), and my mouth is getting sore. As my neutrophil level drops to zero, all the bacteria that live most naturally in the mouth, throat and so on can run riot. They have warned me that it will get worse. We experimented with a change to my anti-sickness regime, to see if I really need it IV. I have decided I do. Half of it is psychosomatic, but sick is sick whatever the reason!
Rose arrived nice and early after having a respite day away from me yesterday. If you recall, she played some golf ... and she won! Well done Rose both for being able to concentrate well enough to play, and for winning.
We got a nice surprise visit from the consultant in charge of my case who is Professor Khwaja. I really like his style; rather than the bluff knowing that most consultants exude (especially in TV series), he has a more studied, authoritative delivery (I like the more traditional consultant types of course). We discussed the next hurdle I have to cross, namely to get into remission. He thinks that because of the type of cancer I have, and the drug regime i am on, the chances are 80 to 90%. It will be another two weeks or more until we know, and unfortunately until then all I can do is wait. If I do not get into remission, there is a plan B alternative course of chemotherapy, but no plan C!
If I do get to remission, I will have the next stage of treatment as an outpatient. I now know the hotel I will be staying in if all goes to plan - it is a Radisson just around the corner from here. I will send details at a more appropriate time. Needless to say they will have WiFi, so my connectivity will hopefully be much improved.
I tried the Kosher veggie meal for lunch; it was actually salmon with potatoes, and not badly done (100x better than the "normal" hospital food). I was not surprised to get fish, the split is just meat or not meat! Having tried all the options, I will stick with Halal veggie. Just after lunch, Peter and Sharon turned up for a surprise visit, having just had a meal with their son who is studying at UCL, and we had a nice chat. After they left, Rose helped with a couple more crossword clues before she too departed, and I had a small nap after all the excitement!
In the evening, Marilyn popped in to say hello. She has hurt her back and is off skiing soon, so I hope it improves before then. She told me about her trip to see Strictly Come Dancing live - it sounded really good. My dinner arrived whilst she was here, so she was able to appreciate the difference between the two standard levels. I really must find time to try and influence the hospital to change its policy.
It has been a very slow treatment day; the next busy day is Friday when I get my last chemotherapy for this cycle. My haemoglobin count is borderline, just above 8, such that even standing up is an effort. When it drops below they give more red cells, which I hope to get tomorrow.
Rose arrived nice and early after having a respite day away from me yesterday. If you recall, she played some golf ... and she won! Well done Rose both for being able to concentrate well enough to play, and for winning.
We got a nice surprise visit from the consultant in charge of my case who is Professor Khwaja. I really like his style; rather than the bluff knowing that most consultants exude (especially in TV series), he has a more studied, authoritative delivery (I like the more traditional consultant types of course). We discussed the next hurdle I have to cross, namely to get into remission. He thinks that because of the type of cancer I have, and the drug regime i am on, the chances are 80 to 90%. It will be another two weeks or more until we know, and unfortunately until then all I can do is wait. If I do not get into remission, there is a plan B alternative course of chemotherapy, but no plan C!
If I do get to remission, I will have the next stage of treatment as an outpatient. I now know the hotel I will be staying in if all goes to plan - it is a Radisson just around the corner from here. I will send details at a more appropriate time. Needless to say they will have WiFi, so my connectivity will hopefully be much improved.
I tried the Kosher veggie meal for lunch; it was actually salmon with potatoes, and not badly done (100x better than the "normal" hospital food). I was not surprised to get fish, the split is just meat or not meat! Having tried all the options, I will stick with Halal veggie. Just after lunch, Peter and Sharon turned up for a surprise visit, having just had a meal with their son who is studying at UCL, and we had a nice chat. After they left, Rose helped with a couple more crossword clues before she too departed, and I had a small nap after all the excitement!
In the evening, Marilyn popped in to say hello. She has hurt her back and is off skiing soon, so I hope it improves before then. She told me about her trip to see Strictly Come Dancing live - it sounded really good. My dinner arrived whilst she was here, so she was able to appreciate the difference between the two standard levels. I really must find time to try and influence the hospital to change its policy.
It has been a very slow treatment day; the next busy day is Friday when I get my last chemotherapy for this cycle. My haemoglobin count is borderline, just above 8, such that even standing up is an effort. When it drops below they give more red cells, which I hope to get tomorrow.
Tuesday 25 January 2011
A curious effect of the transplant
I slept fitfully with saline attached, and frequent trips to the loo. I thought I would sleep better after all the procedures but alas no.
This morning I played some more bridge - a totally brilliant game. It is a shame so few of you play.
Harry came to visit and we had a really good chat catching up and comparing likes and dislikes. He brought me a bottle of Volvic, so obviously reading the blog! Harry was sent a pack describing the transplant procedure, and there is one fascinating fact that comes out of it. Although he is a perfect match for stem cell transplant, Harry is a different blood group to me! Apparently, after the transplant, my blood group will change to be the same as his! It is quite logical when you think about it, since they will kill all my stem cells before injecting his, so my blood will be made by the transplanted stem cells. Also, there is a chance that I may need a stem cell top-up, in which case they harvest some more from Harry and give them to me. This is a simple procedure apparently, and is sometimes necessary but not always (the consultant was vague). Harry had to leave at 2pm. I hope next time Sandra will accompany him.
They gave me my next dose of the Rituximab today, and it seemed to go in OK. I am currently attached to more saline; they are determined to get my kidney indicators lower. Even though I am now drinking over 2L a day, they still think I need the drip. After yesterday, today was a relatively quiet day for treatment. I am noticing that the number of pills I take is so large, my throat starts to constrict at the thought of it. Some of the big ones are getting hard to swallow, and I never had this trouble before. I think it is like reverse aversion therapy!
This afternoon Patrick came to visit, cycling across London from Chiswick on his super tax efficient bike. Was it brave, or foolish? Patrick brought me a Danish pastry and made me a cup of tea to go with it. I have eaten well today! Dinner was not a curry, but a more Mediterranean style lentil stew with rice. OK, but not as good as the other meals. I have tried a Kosher veggie for tomorrow, and I will report back. Marcio just called for a nice chat; all communications are gratefully received.
As promised, I will share a few photos of Collioure with you. I was lucky enough to ride the Internet boom (it was pot luck in the company I worked for), and with the free money we decided to buy an apartment in France. When we saw Collioure we fell in love.
There are many beautiful walks over the hills.
The apartment faces South-East, overlooking the Alberes mountains, which are the foothills of the Pyrenees. We chose this because there is a persistent North-Westerly wind called "la tramontane" which can blow strongly. Anyone with a sea view has it in their faces, whereas our balcony is sheltered.
This is the main room. There are two bedrooms, one above and one below this room, each with facilities. The main thing it lacks is air-con. Perhaps one day ...
The apartment is empty because these pictures were taken on the day we moved out to be able to rent it. We also have a more conventionally financed (ie mortgaged!) house in a nearby inland village called Sorede, which I can work from (the apartment was too small). So when you speak to me in July/August I am in my office in France!
This morning I played some more bridge - a totally brilliant game. It is a shame so few of you play.
Harry came to visit and we had a really good chat catching up and comparing likes and dislikes. He brought me a bottle of Volvic, so obviously reading the blog! Harry was sent a pack describing the transplant procedure, and there is one fascinating fact that comes out of it. Although he is a perfect match for stem cell transplant, Harry is a different blood group to me! Apparently, after the transplant, my blood group will change to be the same as his! It is quite logical when you think about it, since they will kill all my stem cells before injecting his, so my blood will be made by the transplanted stem cells. Also, there is a chance that I may need a stem cell top-up, in which case they harvest some more from Harry and give them to me. This is a simple procedure apparently, and is sometimes necessary but not always (the consultant was vague). Harry had to leave at 2pm. I hope next time Sandra will accompany him.
They gave me my next dose of the Rituximab today, and it seemed to go in OK. I am currently attached to more saline; they are determined to get my kidney indicators lower. Even though I am now drinking over 2L a day, they still think I need the drip. After yesterday, today was a relatively quiet day for treatment. I am noticing that the number of pills I take is so large, my throat starts to constrict at the thought of it. Some of the big ones are getting hard to swallow, and I never had this trouble before. I think it is like reverse aversion therapy!
This afternoon Patrick came to visit, cycling across London from Chiswick on his super tax efficient bike. Was it brave, or foolish? Patrick brought me a Danish pastry and made me a cup of tea to go with it. I have eaten well today! Dinner was not a curry, but a more Mediterranean style lentil stew with rice. OK, but not as good as the other meals. I have tried a Kosher veggie for tomorrow, and I will report back. Marcio just called for a nice chat; all communications are gratefully received.
As promised, I will share a few photos of Collioure with you. I was lucky enough to ride the Internet boom (it was pot luck in the company I worked for), and with the free money we decided to buy an apartment in France. When we saw Collioure we fell in love.
 |
| From My Blog Photos |
 |
| From My Blog Photos |
 |
| From My Blog Photos |
There are many beautiful walks over the hills.
 |
| From My Blog Photos |
The apartment faces South-East, overlooking the Alberes mountains, which are the foothills of the Pyrenees. We chose this because there is a persistent North-Westerly wind called "la tramontane" which can blow strongly. Anyone with a sea view has it in their faces, whereas our balcony is sheltered.
 |
| From My Blog Photos |
This is the main room. There are two bedrooms, one above and one below this room, each with facilities. The main thing it lacks is air-con. Perhaps one day ...
 |
| From My Blog Photos |
The apartment is empty because these pictures were taken on the day we moved out to be able to rent it. We also have a more conventionally financed (ie mortgaged!) house in a nearby inland village called Sorede, which I can work from (the apartment was too small). So when you speak to me in July/August I am in my office in France!
A small comment on the iPad
Early on, Anna predicted I would fall in love with my iPad. I would not quite say that, but today I found out how to lock the orientation, which means that for me, the iPad (or I guess any tablet) is the best way to view photos.
Each time I learn a bit more about the iPad, I like it more. I look forward to the future tablets that will support more complex gestures, context menus and so on.
Each time I learn a bit more about the iPad, I like it more. I look forward to the future tablets that will support more complex gestures, context menus and so on.
Monday 24 January 2011
A busy treatment day
It has been my busiest day of treatment so far today, but before I tell you about it, I want to thank you for letting me know that my lost post was actually submitted under Jan 2001! The app author has not replied to any of my emails yet, but I have informed him. Meantime, I am going to use GoodReader for data entry and copy direct to blogger, until BlogPress is fixed.
They have been trying to get my blood in a fit state to give the lumbar puncture (intrathecal) procedure, and this morning I had 7 bags of various bloody bits, Plasma, Fibrin, Platelets etc. It is amazing how they can break down and recombine things. When all the blood was in, they took a blood sample to verify it had worked, and rushed it off to the lab, but time was getting on. Originally they said they would do the intrathecal before 5pm, but the clock rolled on by. Eventually, at 5:45 the doctor arrived with the kit, said the blood checked out and got started. They have a legal requirement to do it before 6pm! The actual procedure was only mildly painful. They drain off some fluid for testing, and then inject a small amount of chemotherapy just in case. It only took about 15 minutes, but then you must lie flat for at least an hour - I took 2 - otherwise you get a nasty headache. During this time I listened to Dark Side of the Moon, and an album from the 90's by a band called Suede that only Brits will know. Both classics, but the Floyd is just awesome. One of the all time greatest rock albums.
Whilst the intrathecal was in progress, I was hooked up to the anti-fungal stuff, and as soon as it was over, whilst I was listening to the music they started me on the PEG-aspariginase! This is still feeding into me as I write. My treatment schedule now contains only two more Rituximab doses, and then I am done for this cycle.
After the treatment cycle is over, they will keep me here until I am no longer neutropenic, and then let me go home. About a week later I will come back to outpatients for a bone marrow biopsy to confirm the remission (I hope). The last Rituximab will be on Feb 1st, so possibly by the weekend (Feb 5th) I could be homeward bound. I have my fingers crossed. It all depends on how quickly my blood counts recover. The bone marrow biopsy is the next critical stage, as it must show I am in remission in order for me to proceed to the next stage.
Last night I had a long chat with one of the nurses because I mentioned our house in France. She worked as an au pair in a place in the Pyrenees and speaks French. I showed her the pictures of Collioure, that one day I will share with you all.
Rose came to visit this morning, and brought more soup and clean clothes. I may have harped on about the soup a bit too much, but it was good! I will miss her tomorrow as she is having a golf day; so good luck for tomorrow! This afternoon, Alistair came to visit. Alistair had the great vision and foresight to hire me in 1995, when I answered the 2 inch advert he placed in Computer Weekly; my how times have changed! We had a great chat about lots of things, and he left when they finally came to start the intrathecal.
Marcio rang, but I was too busy to chat, so hopefully he will call tomorrow at a more convenient time. After all the stuff going on today, I expect tomorrow will be more quiet, with just the Rituximab.
I have bought BridgeBaron, and it is brilliant! It is a complete hog of the machine though, you need to close almost all the other apps to make it work, otherwise it just keeps saying it needs more memory. Fortunately I learned how to close an app - I had 13 running!! Before, the only thing I could do was reboot! I wonder when I will have the nerve to play online.
They have been trying to get my blood in a fit state to give the lumbar puncture (intrathecal) procedure, and this morning I had 7 bags of various bloody bits, Plasma, Fibrin, Platelets etc. It is amazing how they can break down and recombine things. When all the blood was in, they took a blood sample to verify it had worked, and rushed it off to the lab, but time was getting on. Originally they said they would do the intrathecal before 5pm, but the clock rolled on by. Eventually, at 5:45 the doctor arrived with the kit, said the blood checked out and got started. They have a legal requirement to do it before 6pm! The actual procedure was only mildly painful. They drain off some fluid for testing, and then inject a small amount of chemotherapy just in case. It only took about 15 minutes, but then you must lie flat for at least an hour - I took 2 - otherwise you get a nasty headache. During this time I listened to Dark Side of the Moon, and an album from the 90's by a band called Suede that only Brits will know. Both classics, but the Floyd is just awesome. One of the all time greatest rock albums.
Whilst the intrathecal was in progress, I was hooked up to the anti-fungal stuff, and as soon as it was over, whilst I was listening to the music they started me on the PEG-aspariginase! This is still feeding into me as I write. My treatment schedule now contains only two more Rituximab doses, and then I am done for this cycle.
After the treatment cycle is over, they will keep me here until I am no longer neutropenic, and then let me go home. About a week later I will come back to outpatients for a bone marrow biopsy to confirm the remission (I hope). The last Rituximab will be on Feb 1st, so possibly by the weekend (Feb 5th) I could be homeward bound. I have my fingers crossed. It all depends on how quickly my blood counts recover. The bone marrow biopsy is the next critical stage, as it must show I am in remission in order for me to proceed to the next stage.
Last night I had a long chat with one of the nurses because I mentioned our house in France. She worked as an au pair in a place in the Pyrenees and speaks French. I showed her the pictures of Collioure, that one day I will share with you all.
Rose came to visit this morning, and brought more soup and clean clothes. I may have harped on about the soup a bit too much, but it was good! I will miss her tomorrow as she is having a golf day; so good luck for tomorrow! This afternoon, Alistair came to visit. Alistair had the great vision and foresight to hire me in 1995, when I answered the 2 inch advert he placed in Computer Weekly; my how times have changed! We had a great chat about lots of things, and he left when they finally came to start the intrathecal.
Marcio rang, but I was too busy to chat, so hopefully he will call tomorrow at a more convenient time. After all the stuff going on today, I expect tomorrow will be more quiet, with just the Rituximab.
I have bought BridgeBaron, and it is brilliant! It is a complete hog of the machine though, you need to close almost all the other apps to make it work, otherwise it just keeps saying it needs more memory. Fortunately I learned how to close an app - I had 13 running!! Before, the only thing I could do was reboot! I wonder when I will have the nerve to play online.
My optimistic treatment timetable
I have Retford this using GoodReader, an app that I can recommend!
I am currently in the first cycle of chemo called induction, which is designed to get my leukaemia into remission. If all goes well the chemo ends in the first week of February. I will then stay in hospital whilst my blood counts recover, which should take about a week. If the signs are good they will do a bone marrow biopsy to confirm my remission, and I will be allowed home for a week or maybe more as respite from hospital. I am not in good physical shape, but I will try some gentle exercise to get back some muscle tone. Then, I will have the second cycle ...
The second cycle of chemo is called consolidation intended to consolidate the remission (also known as induction phase 2). If all is well, they will treat me as an "ambulatory outpatient", which means that instead of an inpatient bed at £750/night they put me up in a nearby hotel (£150/night) and I am treated as an outpatient. I don't stay home because that is an hour away - too far in case of emergencies. Since I will be staying with the great unwashed, I assume I will not go neutropenic, and if my drug regime is good I should be able to even eat out in restaurants! This second cycle lasts another 4 weeks, with post treatment recovery time, and then another spell at home, probably finishing at the end of March. We can then move on to the transplant ...
My knowledge of the actual transplant process is a little sketchy, but certainly I will be admitted to the place I am now, and blitzed with chemo to destroy my stem cells. This is the part where I will be weakest, sickest and most prone to infection. When I am ready, they will prep Harry with a course of injections that stimulate his stem cell production, and then on the day he will come here, they will harvest his stem cells and inject them to me. They will then hopefully manage my body so that the transplant takes, using immune suppressant drugs and whatever (I will learn more nearer the time). The fact that Harry is a perfect match and CMV- improves the chances of a good transplant, but there is a significant risk. The post-transplant recovery time can be long. The consultant led me to think months rather than weeks. If the transplant happens at the end of April, and there are no complications, I image I might be recovered by the summer. I have set my boss's expectation for a return to work in October, which I hope to better, but as you can see there are many variables. Probably the biggest risk is a major infection pre transplant.
I am currently in the first cycle of chemo called induction, which is designed to get my leukaemia into remission. If all goes well the chemo ends in the first week of February. I will then stay in hospital whilst my blood counts recover, which should take about a week. If the signs are good they will do a bone marrow biopsy to confirm my remission, and I will be allowed home for a week or maybe more as respite from hospital. I am not in good physical shape, but I will try some gentle exercise to get back some muscle tone. Then, I will have the second cycle ...
The second cycle of chemo is called consolidation intended to consolidate the remission (also known as induction phase 2). If all is well, they will treat me as an "ambulatory outpatient", which means that instead of an inpatient bed at £750/night they put me up in a nearby hotel (£150/night) and I am treated as an outpatient. I don't stay home because that is an hour away - too far in case of emergencies. Since I will be staying with the great unwashed, I assume I will not go neutropenic, and if my drug regime is good I should be able to even eat out in restaurants! This second cycle lasts another 4 weeks, with post treatment recovery time, and then another spell at home, probably finishing at the end of March. We can then move on to the transplant ...
My knowledge of the actual transplant process is a little sketchy, but certainly I will be admitted to the place I am now, and blitzed with chemo to destroy my stem cells. This is the part where I will be weakest, sickest and most prone to infection. When I am ready, they will prep Harry with a course of injections that stimulate his stem cell production, and then on the day he will come here, they will harvest his stem cells and inject them to me. They will then hopefully manage my body so that the transplant takes, using immune suppressant drugs and whatever (I will learn more nearer the time). The fact that Harry is a perfect match and CMV- improves the chances of a good transplant, but there is a significant risk. The post-transplant recovery time can be long. The consultant led me to think months rather than weeks. If the transplant happens at the end of April, and there are no complications, I image I might be recovered by the summer. I have set my boss's expectation for a return to work in October, which I hope to better, but as you can see there are many variables. Probably the biggest risk is a major infection pre transplant.
Sunday 23 January 2011
Blog app crashed again
I just wrote a huge post, but the blog app I use failed to post it and lost the text. I am in contact withe author, he obviously has put lots of bugs in the latest version just to annoy me. He has told me I should be able to recover the document by syncing with a laptop, so I will try tomorrow and see if it works. From now on I am not using the app anymore.
My original post detailed the timetable for my treatment, so hopefully you will get that tomorrow, as well as other details. In the meantime I will just regale you with a story of mineral waters.
I hope you have seen the film "The Player". In it, Tim Robbins plays a Hollywood exec who only drinks mineral water. He is always ordering different brands, and In one scene he sips his water and calls the waiter and says "I ordered Evian, and this is not" or words to that effect.
Well, he was right, not all mineral waters are the same! Rose brings me in mineral water (the hospital tap water is horrid), and between the three brands so far, Volvic is a clear winner. It filters through volcanos in the Auvergne, and it is much "crisper" than e.g. the Highland Spring I am drinking now that tastes a bit cloying. Since I am drinking 1.5 to 2 litres a day of the stuff, it makes a difference.
I had a busy day of visitors, Rose came nice and early armed with her laptop, and we downloaded some pictures and more music. I will use the pictures in an upcoming story, provided the blog app writer can fix his app! Then as a nice surprise Sharon arrived. Sharon and I were at college together, and I introduced her to my old friend Pete (previously mentioned). They married, and I was best man. By coincidence, their son studies at UCL just over the road. A jolly time was had by all. Rose also brought some more of her delicious homemade leek and carrot soup, which proved to be a life saver as lunch was very late. I had the Halal veggie for both lunch and dinner and it is meeting my expectations. Tomorrow I have tried an Afro-Caribbean meal for a change. I will keep you posted!
After the ladies departed, Les came to visit and we played a sort of fantasy card game called "Magic, the Gathering". It is a duel between wizards, very fantasy geeky but great fun. It is well established (20 years), and there are international tournaments and the like, and even rare collectors cards. All a bit too geeky for me, but I enjoyed the game. We one one game each. Still on the games front, thanks for all your suggestions, but I think I will plump for BridgeBaron, a popular US bridge game available for iPad. I love bridge, and this game can be played solo, or on-line (I think). If any of you have play, and know the game I would appreciate any feedback you have.
On the treatment front, it has been a slow day. I had some more red cells to keep my haemoglobin above 8, but otherwise I have been free of the IV pump. They tell me my clotting factors are now in order, and they hope to do the intrathecal procedure tomorrow.
As ever, thanks for all your comments and mails. Improvise the timetable for tomorrow, even if I have to refuels it all!
My original post detailed the timetable for my treatment, so hopefully you will get that tomorrow, as well as other details. In the meantime I will just regale you with a story of mineral waters.
I hope you have seen the film "The Player". In it, Tim Robbins plays a Hollywood exec who only drinks mineral water. He is always ordering different brands, and In one scene he sips his water and calls the waiter and says "I ordered Evian, and this is not" or words to that effect.
Well, he was right, not all mineral waters are the same! Rose brings me in mineral water (the hospital tap water is horrid), and between the three brands so far, Volvic is a clear winner. It filters through volcanos in the Auvergne, and it is much "crisper" than e.g. the Highland Spring I am drinking now that tastes a bit cloying. Since I am drinking 1.5 to 2 litres a day of the stuff, it makes a difference.
I had a busy day of visitors, Rose came nice and early armed with her laptop, and we downloaded some pictures and more music. I will use the pictures in an upcoming story, provided the blog app writer can fix his app! Then as a nice surprise Sharon arrived. Sharon and I were at college together, and I introduced her to my old friend Pete (previously mentioned). They married, and I was best man. By coincidence, their son studies at UCL just over the road. A jolly time was had by all. Rose also brought some more of her delicious homemade leek and carrot soup, which proved to be a life saver as lunch was very late. I had the Halal veggie for both lunch and dinner and it is meeting my expectations. Tomorrow I have tried an Afro-Caribbean meal for a change. I will keep you posted!
After the ladies departed, Les came to visit and we played a sort of fantasy card game called "Magic, the Gathering". It is a duel between wizards, very fantasy geeky but great fun. It is well established (20 years), and there are international tournaments and the like, and even rare collectors cards. All a bit too geeky for me, but I enjoyed the game. We one one game each. Still on the games front, thanks for all your suggestions, but I think I will plump for BridgeBaron, a popular US bridge game available for iPad. I love bridge, and this game can be played solo, or on-line (I think). If any of you have play, and know the game I would appreciate any feedback you have.
On the treatment front, it has been a slow day. I had some more red cells to keep my haemoglobin above 8, but otherwise I have been free of the IV pump. They tell me my clotting factors are now in order, and they hope to do the intrathecal procedure tomorrow.
As ever, thanks for all your comments and mails. Improvise the timetable for tomorrow, even if I have to refuels it all!
Saturday 22 January 2011
Close, but no cigar
It has been a pleasant day, marred only by a few niggles and a disappointment ...
Rose arrived bright and early, and we passed a very pleasant few hours chatting. She made me some leek and carrot soup which was absolutely delicious, and brought me some clean clothes. I would be totally lost without her support and I love her dearly.
On the medical front, now that my platelets are low, I am beset by a persistently recurring nosebleed. So far it has not been serious, but it makes me think twice before blowing my nose! I also have developed a slightly swollen neck and a rash on my shoulders. I showed the doctor when she visited, and she says it is a mild allergic reaction to one of the plethora of drugs I am taking. Since neither is giving me any discomfort, we will just monitor for the time being. My red cell count dropped again, so I am currently getting some blood (red cells only), in addition to the usual,saline drip that will go on overnight.
After Rose left, I finished my book, and you will have seen the review by now. Then, I noticed that the App store had three updates for me, the most exciting of which was that BTfon is now available for iPad ...
BTfon is the app that gives access to all of BT's WiFi hotspots in the UK. There are tons in London needless to say. I was very excited to think I could be free of 3G. The app firstly ran out of memory, and runs quite slowly even after a reboot of the iPad, but sure enough I am surrounded by hotspots ... except up here on the 13th floor I cannot connect to any of them. I tried in vain for a while, and then gave up. I am stuck with 3G.
And stuck is the right word mostly. Although it promised up to 5M, or maybe realistically 2M, I ran a broadband meter on my line, with 5 bars of reception, and find I get just over 750K! This is the root of my problems with the BBC iPlayer - not enough bandwidth. In fact, this morning at 9am when the youth of today were all still slumbering after a night on the raz, I was able to watch a programme from the iPlayer, but even then it could not stream fast enough and kept pausing. At least for me, where I am (in a high rise block in the middle of London), the 3G hype is not matched by reality. I think I get 10/10 for effort, but no cigar!
By now you already know that this blog app crashed on me - not a great day for my IT infra! This was the second update from the App store. There remains a Kindle update, but now I am nervous they'll break that ... No, surely Amazon has some quality control!
- Posted using BlogPress from my iPad
Rose arrived bright and early, and we passed a very pleasant few hours chatting. She made me some leek and carrot soup which was absolutely delicious, and brought me some clean clothes. I would be totally lost without her support and I love her dearly.
On the medical front, now that my platelets are low, I am beset by a persistently recurring nosebleed. So far it has not been serious, but it makes me think twice before blowing my nose! I also have developed a slightly swollen neck and a rash on my shoulders. I showed the doctor when she visited, and she says it is a mild allergic reaction to one of the plethora of drugs I am taking. Since neither is giving me any discomfort, we will just monitor for the time being. My red cell count dropped again, so I am currently getting some blood (red cells only), in addition to the usual,saline drip that will go on overnight.
After Rose left, I finished my book, and you will have seen the review by now. Then, I noticed that the App store had three updates for me, the most exciting of which was that BTfon is now available for iPad ...
BTfon is the app that gives access to all of BT's WiFi hotspots in the UK. There are tons in London needless to say. I was very excited to think I could be free of 3G. The app firstly ran out of memory, and runs quite slowly even after a reboot of the iPad, but sure enough I am surrounded by hotspots ... except up here on the 13th floor I cannot connect to any of them. I tried in vain for a while, and then gave up. I am stuck with 3G.
And stuck is the right word mostly. Although it promised up to 5M, or maybe realistically 2M, I ran a broadband meter on my line, with 5 bars of reception, and find I get just over 750K! This is the root of my problems with the BBC iPlayer - not enough bandwidth. In fact, this morning at 9am when the youth of today were all still slumbering after a night on the raz, I was able to watch a programme from the iPlayer, but even then it could not stream fast enough and kept pausing. At least for me, where I am (in a high rise block in the middle of London), the 3G hype is not matched by reality. I think I get 10/10 for effort, but no cigar!
By now you already know that this blog app crashed on me - not a great day for my IT infra! This was the second update from the App store. There remains a Kindle update, but now I am nervous they'll break that ... No, surely Amazon has some quality control!
- Posted using BlogPress from my iPad
Supplemental
I just wrote my blog using an updated version of this app, and it lost everything. I will now have to type it again. I am very annoyed withe the app authors!!
- Posted using BlogPress from my iPad
- Posted using BlogPress from my iPad
A short review of Judas Unchained by Peter F Hamilton
This book completes the Commonwealth saga (a bilogy?). After my somewhat lukewarm review of the fist instalment, I am happy to report that this second is a cracker! There are three major plot lines, and they all move ahead at a fast pace. There is almost no overlong description of the wonders of the planets, and the three plots all come together nicely at the end. To my surprise, the final chapter that ties off the loose ends is pleasantly succinct. Some of the action sequences would look good in a film.
So, I would recommend these two books for SciFi fans everywhere. I could not put Judas Unchained down, it was a page turner. However, I doubt I will return to Hamilton anytime soon though, because of the first book.
I think I will move on to The Year Of The Flood by Margaret Atwood. It has a futuristic setting, like Handmaids Tale and Oryx and Crake ((both excellent, as are all here books I think), so it will be a bridge between SciFi and other genres.
- Posted using BlogPress from my iPad
So, I would recommend these two books for SciFi fans everywhere. I could not put Judas Unchained down, it was a page turner. However, I doubt I will return to Hamilton anytime soon though, because of the first book.
I think I will move on to The Year Of The Flood by Margaret Atwood. It has a futuristic setting, like Handmaids Tale and Oryx and Crake ((both excellent, as are all here books I think), so it will be a bridge between SciFi and other genres.
- Posted using BlogPress from my iPad
Friday 21 January 2011
An interview with the catering manager
Yesterday's food reached a brand new low level of quality, and I mentioned this to the nurses. Today, the dietician talked to me about it, and arranged an interview with the catering manager. She also told me to try some of the special meal options as she heard they were better. These options are Kosher, Affro-Caribbean and Halal with a choice of veggie or non-veggie. Later on, the catering manger duly arrived, and we discussed the over-processed, cold and undercooked (potatoes) food that I had been served. You won't believe me but I tried to be as polite as possible! Anyway, he took it on the chin, and we also discussed the other speciality food options ...
... this evening on my tray was a veggie Halal meal of pea and cabbage curry, Dahl and saffron rice. It was designed to be microwaved, arrived hot and was dare I say it delicious. It is the first square meal I have had in two weeks!! I will be taking this option for the foreseeable (although I might also try the other styles as they are packaged the same way apparently).
The transplant coordinator popped in to confirm Harry's news, and the consultant also gave me an extra reason to be thankful for. About half the population carries a virus called CMV (wikipedia will tell all). This virus is harmless normally, unless you become immune-suppressed, for example after transplant, when it can flare up. I already knew I was CMV-, but rather luckily Harry is also negative. This greatly increases my chances of accepting the transplant; Harry is a actually one in sixteen chance for me.
Today has been a day for chemo therapy. The third and final (this phase) doses of Daunorubicin and Vincristine have been administered. I also received some blood products to help with clotting (infusing as I write), in preparation for the lumbar puncture that has been delayed until the blood results are favourable. I am totally neutropenic, and my platelets have also fallen to where they would expect.
Despite increasing my fluid intake, I still need to be hooked up all night to saline, to get the creatinine levels down in my kidneys, but I hope tonight and tomorrow will be the last of that.
Rose came for her usual visit, and the mood was light because of yesterday's news. We pretty much finished the crossword and I have successfully moved on to the next one (I think the editor put some stinkers in at the beginning to show how mighty the Times crossword is).
I also had another reflexology session. They are very nice, but I am pretty sure I will not have any more once out of hospital. If I am to self-indulge, it will surely be with a bottle of Vieux Chateau Certan!!
After lunch, Yvonne popped by with a new hairstyle. Yvonne is a long standing friend, we met 24 years ago at her first wedding :):) when I was just starting out with Rose. I was violently I'll after drinking too much Champagne. Plus ca change ...
I also got calls from June, Jeremy and Yaniv; I would say that today has been a good day.
- Posted using BlogPress from my iPad
... this evening on my tray was a veggie Halal meal of pea and cabbage curry, Dahl and saffron rice. It was designed to be microwaved, arrived hot and was dare I say it delicious. It is the first square meal I have had in two weeks!! I will be taking this option for the foreseeable (although I might also try the other styles as they are packaged the same way apparently).
The transplant coordinator popped in to confirm Harry's news, and the consultant also gave me an extra reason to be thankful for. About half the population carries a virus called CMV (wikipedia will tell all). This virus is harmless normally, unless you become immune-suppressed, for example after transplant, when it can flare up. I already knew I was CMV-, but rather luckily Harry is also negative. This greatly increases my chances of accepting the transplant; Harry is a actually one in sixteen chance for me.
Today has been a day for chemo therapy. The third and final (this phase) doses of Daunorubicin and Vincristine have been administered. I also received some blood products to help with clotting (infusing as I write), in preparation for the lumbar puncture that has been delayed until the blood results are favourable. I am totally neutropenic, and my platelets have also fallen to where they would expect.
Despite increasing my fluid intake, I still need to be hooked up all night to saline, to get the creatinine levels down in my kidneys, but I hope tonight and tomorrow will be the last of that.
Rose came for her usual visit, and the mood was light because of yesterday's news. We pretty much finished the crossword and I have successfully moved on to the next one (I think the editor put some stinkers in at the beginning to show how mighty the Times crossword is).
I also had another reflexology session. They are very nice, but I am pretty sure I will not have any more once out of hospital. If I am to self-indulge, it will surely be with a bottle of Vieux Chateau Certan!!
After lunch, Yvonne popped by with a new hairstyle. Yvonne is a long standing friend, we met 24 years ago at her first wedding :):) when I was just starting out with Rose. I was violently I'll after drinking too much Champagne. Plus ca change ...
I also got calls from June, Jeremy and Yaniv; I would say that today has been a good day.
- Posted using BlogPress from my iPad
Thursday 20 January 2011
A New Hope
I hope George Lucas does not mind me borrowing the title of his epic, but it somehow seems appropriate. It has been a busy 24 hours, but I will start with the news that my brother Harry rang me today to say that he *is* a match for me, and can be a stem cell donor. To be honest I still cannot quite believe it! It is certainly a great weight off my mind, and I am very grateful to Harry for taking the test and having the right profile! It by no means guarantees anything, but it does remove some uncertainty, which is the one striking feature of this whole treatment; you simply don't know what will happen.
The next bit of news is that they decided they will not move me to another room, so I am still in the same place, T13N, room 10.
Last night the ward was a bit short staffed, and there were some problems with the IV pump setup (not mechanical) that made for a very disruptive night. Furthermore, the nurse did not take blood first thing in the morning, which was especially important today as I was supposed to have a lumbar puncture and have some Methotrexate administered. However, the registrar wanted to see the blood results before doing the procedure to make sure clotting would be OK.
Eventually the took blood at 11, but the samples went missing! So, I did not get the LP, instead it will be done tomorrow if all is OK. Needless to say they took blood again - it must be checked daily.
They have altered my drug regime to include IV Anti-sickness drug Cyclizine, which helps quite a lot with the nausea. I get 3 doses per day, which is not quite enough, but sees me able to eat something.
I have started getting sore elbows! The nurse thinks it is just from the bed (I must be reading too much eh), and not a reaction to the drugs, but they will monitor it. I have some moisturiser for relief.
Rose called for her daily visit and we passed the time very pleasantly. I am now drinking bottled mineral water that she brings me rather than the horrid stuff from the hospital. We cracked some crossword clues, and read some more about Bradley Wiggins. Rose came armed with a wheelie bag to help me move, so that had a nice outing in the car for no real purpose!
Thanks for all your comments, emails and calls. It can get lonely here and the contact is much appreciated.
- Posted using BlogPress from my iPad
The next bit of news is that they decided they will not move me to another room, so I am still in the same place, T13N, room 10.
Last night the ward was a bit short staffed, and there were some problems with the IV pump setup (not mechanical) that made for a very disruptive night. Furthermore, the nurse did not take blood first thing in the morning, which was especially important today as I was supposed to have a lumbar puncture and have some Methotrexate administered. However, the registrar wanted to see the blood results before doing the procedure to make sure clotting would be OK.
Eventually the took blood at 11, but the samples went missing! So, I did not get the LP, instead it will be done tomorrow if all is OK. Needless to say they took blood again - it must be checked daily.
They have altered my drug regime to include IV Anti-sickness drug Cyclizine, which helps quite a lot with the nausea. I get 3 doses per day, which is not quite enough, but sees me able to eat something.
I have started getting sore elbows! The nurse thinks it is just from the bed (I must be reading too much eh), and not a reaction to the drugs, but they will monitor it. I have some moisturiser for relief.
Rose called for her daily visit and we passed the time very pleasantly. I am now drinking bottled mineral water that she brings me rather than the horrid stuff from the hospital. We cracked some crossword clues, and read some more about Bradley Wiggins. Rose came armed with a wheelie bag to help me move, so that had a nice outing in the car for no real purpose!
Thanks for all your comments, emails and calls. It can get lonely here and the contact is much appreciated.
- Posted using BlogPress from my iPad
Wednesday 19 January 2011
Some bad news
Today I received some bad news. The cross match results for my eldest brother Les came in, and he is not a match for me. This leaves me one more 25% chance with Harry, which we should know later this week. A bit of blow, but it always was a numbers game ... after that it's the public register.
Rose came to visit at her usual time, but I was feeling pretty sick, and coupled with the bad news the mood was bit sombre. At lunchtime, our old friend Kevin stopped by for a chat in his lunch break (a bit of a trek from his office), which was much appreciated.
Once again, I could not stomach lunch, but had an enshake instead. Although it sounds trivial, feeling nausea all the time washes all the colour out of life! Later on I was given some IV anti-sickness, and this helped enormously, lifting my mood and enabling me to eat dinner. I hope they will add this to my standard regime, as often as possible. I have been hooked up to the IV pump most of the day, with various things, including another unit of blood to raise my haemoglobin level. Currently I am getting yet more fluid to keep the kidney function under control.
In the evening, Marilyn popped in, and her visit coincided with my lightening mood. She brought me a couple of DVDs (comedy shows) and an interesting article in a magazine about ALL, and even a quote from Martin Luthor King; what riches! Patrick also rang for a chat, all of which made the evening pass rather pleasantly. Last night I watched North by Northwest on the DVD; a cracking film with a fast pace, but my attention span is so low I did have trouble sticking with it.
I have also been told that I must move rooms tomorrow. The room I am in is actually designed for transplant cases, and they have a new one coming tomorrow. I do not know exactly where I will be, but it will be on the 16th floor of this same building. I will update you with the new location tomorrow after I am settled in.
- Posted using BlogPress from my iPad
Rose came to visit at her usual time, but I was feeling pretty sick, and coupled with the bad news the mood was bit sombre. At lunchtime, our old friend Kevin stopped by for a chat in his lunch break (a bit of a trek from his office), which was much appreciated.
Once again, I could not stomach lunch, but had an enshake instead. Although it sounds trivial, feeling nausea all the time washes all the colour out of life! Later on I was given some IV anti-sickness, and this helped enormously, lifting my mood and enabling me to eat dinner. I hope they will add this to my standard regime, as often as possible. I have been hooked up to the IV pump most of the day, with various things, including another unit of blood to raise my haemoglobin level. Currently I am getting yet more fluid to keep the kidney function under control.
In the evening, Marilyn popped in, and her visit coincided with my lightening mood. She brought me a couple of DVDs (comedy shows) and an interesting article in a magazine about ALL, and even a quote from Martin Luthor King; what riches! Patrick also rang for a chat, all of which made the evening pass rather pleasantly. Last night I watched North by Northwest on the DVD; a cracking film with a fast pace, but my attention span is so low I did have trouble sticking with it.
I have also been told that I must move rooms tomorrow. The room I am in is actually designed for transplant cases, and they have a new one coming tomorrow. I do not know exactly where I will be, but it will be on the 16th floor of this same building. I will update you with the new location tomorrow after I am settled in.
- Posted using BlogPress from my iPad
Tuesday 18 January 2011
Inside the belly of the beast
Today, and I suppose yesterday, are indicative of the fact that I am in the middle of a chemo cycle, and the effects are becoming hard for me to cope with.
I slept well last night, still hooked up to saline, but I felt weak in the morning. The first interesting development today is that my haemoglobin level was very low, and this is why I feel week. So they gave me a unit of blood to help me, and I certainly feel a bit better. They will give me another unit tomorrow I think. I felt sick most of the day, even the smell of lunch made me gag, but they have nutritional milk-shakes called "enshakes" that are easier to keep down. I had a banana flavour this morning.
After the blood, I had some IV anti-sickness and some IV Piriton (like the hay fever tablets you can get) in prep for my next dose of Rituximab, which has just finished infusing (the alarm is buzzing as I write). The anti-sickness stuff seems to have worked though, because I managed to eat my dinner (rather grandiosely called pasta provencal, you and I might call it macaroni in tomato sauce).
It has been a good day for visits and calls. Rose came early, and then Christine arrived. She is about to join her feller skiing in Snowbird in Utah for 3 months - nice work if you can get it. And then Babs arrived (very good
golfer) bearing many gifts, including a portable DVD player and a few movies. Thank you very much Babs, I look forward to watching something later. When Chris came yesterday, he left me a copy of Bradley Wiggins' tour 2010 diary, which Rose read to me as I dozed off after the Piriton - it is so very nicety be read a bedtime story!
Later on, Patrick, Jeremy and June all called for a chat, which I do appreciate, even though they all called at the same time, causing my phone to complain bitterly and power down!
- Posted using BlogPress from my iPad
I slept well last night, still hooked up to saline, but I felt weak in the morning. The first interesting development today is that my haemoglobin level was very low, and this is why I feel week. So they gave me a unit of blood to help me, and I certainly feel a bit better. They will give me another unit tomorrow I think. I felt sick most of the day, even the smell of lunch made me gag, but they have nutritional milk-shakes called "enshakes" that are easier to keep down. I had a banana flavour this morning.
After the blood, I had some IV anti-sickness and some IV Piriton (like the hay fever tablets you can get) in prep for my next dose of Rituximab, which has just finished infusing (the alarm is buzzing as I write). The anti-sickness stuff seems to have worked though, because I managed to eat my dinner (rather grandiosely called pasta provencal, you and I might call it macaroni in tomato sauce).
It has been a good day for visits and calls. Rose came early, and then Christine arrived. She is about to join her feller skiing in Snowbird in Utah for 3 months - nice work if you can get it. And then Babs arrived (very good
golfer) bearing many gifts, including a portable DVD player and a few movies. Thank you very much Babs, I look forward to watching something later. When Chris came yesterday, he left me a copy of Bradley Wiggins' tour 2010 diary, which Rose read to me as I dozed off after the Piriton - it is so very nicety be read a bedtime story!
Later on, Patrick, Jeremy and June all called for a chat, which I do appreciate, even though they all called at the same time, causing my phone to complain bitterly and power down!
- Posted using BlogPress from my iPad
Monday 17 January 2011
Kidney problems
I have been feeling a bit under the weather today, and it is caused by my not getting enough fluid intake, causing poisons to build up in my kidneys. It makes me even more tired, and nauseous. Food has been hard to eat, but they do have nutritional milk shakes which I managed to keep down.
To fix the kidney problem, they are giving me fluids IV in 6 hour batches. The first bag is nearly finished, and the second one will infuse whilst I hopefully sleep. I have noticed an improvement already, and was even able to eat some dinner of cornichons and croquet potatoes (a strange repast, but one must take what one can stomach).
The day actually started quite brightly, I slept well with the aid of a tablet, and showered and dressed early. Chris came by to visit at 08:30, and we had a great chat. He left before Rose arrived, but her arrival coincided with my going downhill. Still, it was delightful to have her here as always; we even managed a couple of tough crossword clues. (I should point out that yesterday I managed to finish the codeword and the crossword from the Radio Times, which are both quite difficult and did give me a feeling of satisfaction)
After an interlude with a short Graham Green, I have returned to the second instalment of the SciFi epic; I guess I am hooked!
- Posted using BlogPress from my iPad
To fix the kidney problem, they are giving me fluids IV in 6 hour batches. The first bag is nearly finished, and the second one will infuse whilst I hopefully sleep. I have noticed an improvement already, and was even able to eat some dinner of cornichons and croquet potatoes (a strange repast, but one must take what one can stomach).
The day actually started quite brightly, I slept well with the aid of a tablet, and showered and dressed early. Chris came by to visit at 08:30, and we had a great chat. He left before Rose arrived, but her arrival coincided with my going downhill. Still, it was delightful to have her here as always; we even managed a couple of tough crossword clues. (I should point out that yesterday I managed to finish the codeword and the crossword from the Radio Times, which are both quite difficult and did give me a feeling of satisfaction)
After an interlude with a short Graham Green, I have returned to the second instalment of the SciFi epic; I guess I am hooked!
- Posted using BlogPress from my iPad
Sunday 16 January 2011
Lazy Sunday
Today has been a quiet day. I did not sleep very well again, and have been tired and nauseous all day. I had no visitors, but spoke to Les and Rose, and later on Marcio called. I am reading a "real" book left by a visitor (sorry but I don't know who) by Grahame Greene. It is very short and quite entertaining as an interlude to the SciFi epic!
I had no IV drugs today, just the usual plethora of anti-stuff, and the daily Imanitib. I have asked for a sleeping tablet tonight to see if it helps ...
So, I thought I would share our Christmas dinner tradition with you. You have already seen the wines we had this year. We aim to start eating with Champagne and nibbles at 3pm, which is when the Queen's speech is shown on TV. Here are this years delights:
Sorry I cannot rotate the image. Here is Rose enjoying her Champagne:
I am afraid I cannot remember all the different nibbles, but they are all home made and totally delicious!
Having polished off the amuse bouche, we move to the main course, which has varied over the years, but we keep returning to salmon-en-croute, mainly because it eats so well as leftovers on Boxing Day. Here is the feast:
As you can see, the Bienvenue and the Volnay have been appropriately decanted. Both of these wines are an excellent companion to salmon. We concentrated on the White, leaving a small drop to accompany the cheese course.
However, before we have the cheese, we open our presents, giving us time to recover. Dessert is partaken with a glass of Sauternes quite late in the day!
It is a day of grand excess, that we have celebrated more or less in this manner (just the two of us) for many years now. I hope that this Christmas 2011 will be just as good
- Posted using BlogPress from my iPad
I had no IV drugs today, just the usual plethora of anti-stuff, and the daily Imanitib. I have asked for a sleeping tablet tonight to see if it helps ...
So, I thought I would share our Christmas dinner tradition with you. You have already seen the wines we had this year. We aim to start eating with Champagne and nibbles at 3pm, which is when the Queen's speech is shown on TV. Here are this years delights:
Sorry I cannot rotate the image. Here is Rose enjoying her Champagne:
I am afraid I cannot remember all the different nibbles, but they are all home made and totally delicious!
Having polished off the amuse bouche, we move to the main course, which has varied over the years, but we keep returning to salmon-en-croute, mainly because it eats so well as leftovers on Boxing Day. Here is the feast:
As you can see, the Bienvenue and the Volnay have been appropriately decanted. Both of these wines are an excellent companion to salmon. We concentrated on the White, leaving a small drop to accompany the cheese course.
However, before we have the cheese, we open our presents, giving us time to recover. Dessert is partaken with a glass of Sauternes quite late in the day!
It is a day of grand excess, that we have celebrated more or less in this manner (just the two of us) for many years now. I hope that this Christmas 2011 will be just as good
- Posted using BlogPress from my iPad
A short review of Pandora's Star by Peter F Hamilton
As I mentioned earlier this is a hard-core SciFi epic that is strictly for fans of the genre. Although my tastes have expanded over the years, my misspent youth reading SciFi has stayed with me ...
The main story is quite enjoyable, but for my taste the book would be twice as enjoyable if it were half the length. Far too much time is spent on somewhat repetitive descriptions of the different wonders of the new planets that we humans colonize. The two central conceits of the story are that a) we develop "wormholes" to travel instantaneously between planets, and b) we have genetic engineering so that every 40 years people can get rejuvenated (from 60 to 20). This way, people live hundreds of years. Interplanetary travel is mainly by trains, traveling through the wormholes.
Inevitably there are aliens, enigmas, and far too many characters. The story picks up pace in the last third, which redeems it ... Except it just ends! You need to read the equally lengthy sequel to get the plot lines resolved. I think I will pause before I do.
Given the above, if you have time for a large dose of escapism, then I would recommend the book.
- Posted using BlogPress from my iPad
The main story is quite enjoyable, but for my taste the book would be twice as enjoyable if it were half the length. Far too much time is spent on somewhat repetitive descriptions of the different wonders of the new planets that we humans colonize. The two central conceits of the story are that a) we develop "wormholes" to travel instantaneously between planets, and b) we have genetic engineering so that every 40 years people can get rejuvenated (from 60 to 20). This way, people live hundreds of years. Interplanetary travel is mainly by trains, traveling through the wormholes.
Inevitably there are aliens, enigmas, and far too many characters. The story picks up pace in the last third, which redeems it ... Except it just ends! You need to read the equally lengthy sequel to get the plot lines resolved. I think I will pause before I do.
Given the above, if you have time for a large dose of escapism, then I would recommend the book.
- Posted using BlogPress from my iPad
Saturday 15 January 2011
A day of surprises
I did not sleep well last night, just grabbing a couple of hours, so this morning I was a little below par. Rose arrived nice and early, with her laptop to load more music for me, and a nice picture. You may have seen Anna's comment about us revisiting San Francisco and going to this amazing crab restaurant. Well, here we are in 2004:
On the far left is Lee (Anna's husband) who I met in my first job in the 80's at a small UK software company, and we stayed in touch ever since. Then Anna, Isabella (their daughter) and myself and Rose. Zoom in on the crab - it was truly delicious. I seem to recall we had a good Californian Chardonnay with it, but the producer is gone from my memory. I certainly would love to come back Anna!
This was part of an awesome holiday where we spent a couple of days in San Francisco, followed by skiing in Heavenly and Squaw Valley, followed by wine touring in Napa, Sonoma and Russian River Valley, finishing off with a stop in Cupertino to visit Marcio.
Shortly after Rose arrived, I got two surprise visitors - Lynne and June, old friends from college. This really was a surprise, as I had thought June was in Geneva! She flew back today and stopped by for a visit. It was very nice to see them both, and they bought some nice silly gifts which will distract me for some of the time tomorrow.
Next in to see me were Yvonne and Andy, bearing many snacks and nibbles. Sadly, many of them were unpasturised cheese, which are forbidden. But the cheese straws, chillie nuts, wasabe peanuts and Thai rice snacks have gone down a treat - I rather pigged out on them this evening.
Everyone left around three, and I managed to catch up on some sleep this afternoon, so now I am feeling a bit fresher, and hence able to write the blog!
Whilst failing to sleep last night, I remembered an incident from my past that I thought I might share with you ...
My first date with Rose was to see Aliens 2 at the Marble Arch Odeon (a large movie theatre in London). It was autumn 1986, and a good time was had by all. The next date was dinner a week later, on a Saturday. I had to take my boss to heathrow, and was driving his car, an early Honda Prelude with the very wedge shaped hood (or bonnet as we Brits like to say). On my way back from the airport, I was driving up Willesden High Street, towards home. The road and pavements were busy with Saturday shoppers, and the traffic was moving slowly at about 15mph. As I crossed a pedestrian light, a boy of about 10 years old ran out in front of me! Needless to say I hit him. He rolled up over the bonnet, and fell to the front offside of the car. We were right outside the local police station, which in retrospect was lucky. Of course there were no mobile phones, but somebody popped into the station, and the police called an ambulance. Many passers by told the police what happened, and they just took my name and said no charges would be pressed. It was quite a traumatic episode as you can imagine! Eventually the ambulance arrived, and the lad was taken to hospital - he had a broken leg. The policeman told me that mostly if they go up and over then the injuries are not as bad as if they go under - the wedge shaped Honda was a good thing then! The car was unmarked!
With all the stress and delay, I still made the date with Rose, but I have no idea where we went! I guess it went well though :):):)
As a footnote, the London Ambulance Service sent me a bill for the emergency call out, which I thought was a real liberty. I cannot remember who I called(police or insurance I guess), but they told me it was standard to bill the driver in these cases. I rang the ambulance people and told them to charge the parent's of the boy; I never paid the charge myself. I have no idea if this practice of charging for emergency ambulance callout continues today.
I really appreciate your thoughts and wishes, and although neutropenic I still welcome healthy visitors. Ideally, I prefer to be serially visited, so if you are thinking of coming, please contact me first so that I can plan a little ahead (phone or email is fine).
- Posted using BlogPress from my iPad
On the far left is Lee (Anna's husband) who I met in my first job in the 80's at a small UK software company, and we stayed in touch ever since. Then Anna, Isabella (their daughter) and myself and Rose. Zoom in on the crab - it was truly delicious. I seem to recall we had a good Californian Chardonnay with it, but the producer is gone from my memory. I certainly would love to come back Anna!
This was part of an awesome holiday where we spent a couple of days in San Francisco, followed by skiing in Heavenly and Squaw Valley, followed by wine touring in Napa, Sonoma and Russian River Valley, finishing off with a stop in Cupertino to visit Marcio.
Shortly after Rose arrived, I got two surprise visitors - Lynne and June, old friends from college. This really was a surprise, as I had thought June was in Geneva! She flew back today and stopped by for a visit. It was very nice to see them both, and they bought some nice silly gifts which will distract me for some of the time tomorrow.
Next in to see me were Yvonne and Andy, bearing many snacks and nibbles. Sadly, many of them were unpasturised cheese, which are forbidden. But the cheese straws, chillie nuts, wasabe peanuts and Thai rice snacks have gone down a treat - I rather pigged out on them this evening.
Everyone left around three, and I managed to catch up on some sleep this afternoon, so now I am feeling a bit fresher, and hence able to write the blog!
Whilst failing to sleep last night, I remembered an incident from my past that I thought I might share with you ...
My first date with Rose was to see Aliens 2 at the Marble Arch Odeon (a large movie theatre in London). It was autumn 1986, and a good time was had by all. The next date was dinner a week later, on a Saturday. I had to take my boss to heathrow, and was driving his car, an early Honda Prelude with the very wedge shaped hood (or bonnet as we Brits like to say). On my way back from the airport, I was driving up Willesden High Street, towards home. The road and pavements were busy with Saturday shoppers, and the traffic was moving slowly at about 15mph. As I crossed a pedestrian light, a boy of about 10 years old ran out in front of me! Needless to say I hit him. He rolled up over the bonnet, and fell to the front offside of the car. We were right outside the local police station, which in retrospect was lucky. Of course there were no mobile phones, but somebody popped into the station, and the police called an ambulance. Many passers by told the police what happened, and they just took my name and said no charges would be pressed. It was quite a traumatic episode as you can imagine! Eventually the ambulance arrived, and the lad was taken to hospital - he had a broken leg. The policeman told me that mostly if they go up and over then the injuries are not as bad as if they go under - the wedge shaped Honda was a good thing then! The car was unmarked!
With all the stress and delay, I still made the date with Rose, but I have no idea where we went! I guess it went well though :):):)
As a footnote, the London Ambulance Service sent me a bill for the emergency call out, which I thought was a real liberty. I cannot remember who I called(police or insurance I guess), but they told me it was standard to bill the driver in these cases. I rang the ambulance people and told them to charge the parent's of the boy; I never paid the charge myself. I have no idea if this practice of charging for emergency ambulance callout continues today.
I really appreciate your thoughts and wishes, and although neutropenic I still welcome healthy visitors. Ideally, I prefer to be serially visited, so if you are thinking of coming, please contact me first so that I can plan a little ahead (phone or email is fine).
- Posted using BlogPress from my iPad
Location:London,United Kingdom
Friday 14 January 2011
Welcome back to Dexamethasone
Today my chemo regime restarted the corticosteroid of the title. I take it in bursts of 4 days on, 3 days off. It makes a significant difference to how I feel; it works well in conjunction with the ant-sickness drugs to supress any feeling of nausea, and it engenders a feeling of wellbeing. So, I was feeling yukky yesterday as it was the end of the the "off" period. By ten this morning I felt better.
Whilst on the subject, for the clinically minded of you, I had another infusion of Daunorubicin and Vincristine. Interestingly, the chemo nurse told me that there is a lifetime limit on Daunorubicin; I do not know what this means for me exactly, time will tell I guess. I am currently hooked up to the expensive yellow fungicide.
Whilst in my somewhat miserable state yesterday, I forgot to mention that I had another reflexology session, and very nice it was too. She is also an aromatherapist, and gave me something to help with the nausea. It is a mix of eucalyptus and lemon, and briefly sniffed smells like a rich Syrah, although deeper inhalations are more "medicinal". I love the smell, and I do think it made feel less nauseous, but I am so gullible! Still whether it does anything physical or not is irrelevant eh - it is the effect that counts!
Rose came by this morning, bearing gifts! Most notable of these is a tarte au fine herbes (homemade of course). It is perfect food for in here, and is not surviving first contact very well! I got half the tart (the other half Rose reasonably kept for herself), and I am afraid only a quarter remains. As I had hoped, she also broke the logjam in my current crossword; two heads are so much better than one, especially a distratced one.
Today's lunch was fish and chips. Although far too few chips, it was the best meal they served yet. Don't get me wrong, it was not haute cuisine, but more like what you might get in a pub or a chippy than any of the other meals.
Just after 2pm, my old friend Jonny came to visit (I prefer the more exotic Italian spelling of Gianni). John and I shared a flat in Finchley (somewhat cockroach infested I seem to recall), and then a more genteel place in Willesden Green (for the benefit of my colonial friends, these are London places). This was in the mid-80's ( a shockingly long time ago). It was fabulous to see him. John is a keen and competent golfer, but I still think Rose will whoop him when we next play (they are both way ahead of little old me). John was a great maturing influence on me and I have a lot to thank him for (although he may be horrified to think it). I remember the nights watching Barry McGuigan with a stonking big curry. We used to get Christmas cards from the curry house, which is not a good place to be (and yes people, this was a maturing influence).
As a footnote, Rose and I now get Christmas cards from the hotel in Beaune where we stay most years on our wine buying trips. Maybe I moved up in the world?
A little later on Yaniv rang, and we had a very nice chat that I much appreciated. Yaniv is Israeli, but so unlike the stereotypes we hold that it restores your faith in humankind.
I am now officially neutropenic, as I have been alluding to previously, which means I cannot leave the room, and good hand-hygiene is important. Also, I cannot eat unpasturised cheese. Which makes me wonder how French people survive this treatment:)
I updated my blog profile today, but singularly failed to put the URL of a picture of me doing the Christmas Auracaria (a cryptic crossword composer of renown) on the profile; every attempt I made to paste a link to the picture on picasa failed. If anyone has any bright ideas I would love to hear them (I googled to no avail). As a last resort, I can get Rose to add the photo from her laptop, but I would love to conquer the iPad! One day all these things will work seamlessly!
Whilst on the subject, for the clinically minded of you, I had another infusion of Daunorubicin and Vincristine. Interestingly, the chemo nurse told me that there is a lifetime limit on Daunorubicin; I do not know what this means for me exactly, time will tell I guess. I am currently hooked up to the expensive yellow fungicide.
Whilst in my somewhat miserable state yesterday, I forgot to mention that I had another reflexology session, and very nice it was too. She is also an aromatherapist, and gave me something to help with the nausea. It is a mix of eucalyptus and lemon, and briefly sniffed smells like a rich Syrah, although deeper inhalations are more "medicinal". I love the smell, and I do think it made feel less nauseous, but I am so gullible! Still whether it does anything physical or not is irrelevant eh - it is the effect that counts!
Rose came by this morning, bearing gifts! Most notable of these is a tarte au fine herbes (homemade of course). It is perfect food for in here, and is not surviving first contact very well! I got half the tart (the other half Rose reasonably kept for herself), and I am afraid only a quarter remains. As I had hoped, she also broke the logjam in my current crossword; two heads are so much better than one, especially a distratced one.
Today's lunch was fish and chips. Although far too few chips, it was the best meal they served yet. Don't get me wrong, it was not haute cuisine, but more like what you might get in a pub or a chippy than any of the other meals.
Just after 2pm, my old friend Jonny came to visit (I prefer the more exotic Italian spelling of Gianni). John and I shared a flat in Finchley (somewhat cockroach infested I seem to recall), and then a more genteel place in Willesden Green (for the benefit of my colonial friends, these are London places). This was in the mid-80's ( a shockingly long time ago). It was fabulous to see him. John is a keen and competent golfer, but I still think Rose will whoop him when we next play (they are both way ahead of little old me). John was a great maturing influence on me and I have a lot to thank him for (although he may be horrified to think it). I remember the nights watching Barry McGuigan with a stonking big curry. We used to get Christmas cards from the curry house, which is not a good place to be (and yes people, this was a maturing influence).
As a footnote, Rose and I now get Christmas cards from the hotel in Beaune where we stay most years on our wine buying trips. Maybe I moved up in the world?
A little later on Yaniv rang, and we had a very nice chat that I much appreciated. Yaniv is Israeli, but so unlike the stereotypes we hold that it restores your faith in humankind.
I am now officially neutropenic, as I have been alluding to previously, which means I cannot leave the room, and good hand-hygiene is important. Also, I cannot eat unpasturised cheese. Which makes me wonder how French people survive this treatment:)
I updated my blog profile today, but singularly failed to put the URL of a picture of me doing the Christmas Auracaria (a cryptic crossword composer of renown) on the profile; every attempt I made to paste a link to the picture on picasa failed. If anyone has any bright ideas I would love to hear them (I googled to no avail). As a last resort, I can get Rose to add the photo from her laptop, but I would love to conquer the iPad! One day all these things will work seamlessly!
Thursday 13 January 2011
A slow day
Today has been a slow day. My neutrophils are low, and both Nige and Patrick cancelled their planned visits due to sore throats and sniffels. A bit sad, but I think it is for the best. Nige is a charming professional golfer, and was at one time "Hertfordshire's leading left handed professional", at least that's what it said on a writing block he once gave us:) (sorry Nige, but that slogan will never die). They both called for a chat on the phone though, which was some compensation.
I spent most of the day reading "Pandora's Star", it has taken a while to get into it but I am finally enjoying it (it is a hard-core Sci-Fi epic and I will write a review when done).
I moved on from the ridiculously hard Times crossword to the next one in the book, and crashed and burned again! One clue only is filled in. I have high hopes that Rose will rescue me tomorrow. I used to be good at crosswords ...
In the evening Marilyn stopped by again, which was very much appreciated. She did not stay long, but left me a copy of the Standard, so now I have an easy crossword to give me back some self-respect!
On the treatment front, my liver function returned to normal today, so I was given a Glivec (Imatinib) tablet, which is effective for PH+ ALL (as I think I have blogged before). I feel a bit more tired and sick than earlier in the week, but I guess this is to be expected. They gave me an extra anti-sickness tab,and that perked me up a bit.
I find my mind wandering to philosophical questions; I think that one must have a reason for living over and above just ... living. Certainly I do! Since my short term goal is really just that, it makes life a little colourless. Gosh, how maudlin! When I get through this Rose and I will revisit South Africa, and once again sample the delights of Franschhoek, Stellenbosch and the surrounding areas - reason enough for me eh!
- Posted using BlogPress from my iPad
I spent most of the day reading "Pandora's Star", it has taken a while to get into it but I am finally enjoying it (it is a hard-core Sci-Fi epic and I will write a review when done).
I moved on from the ridiculously hard Times crossword to the next one in the book, and crashed and burned again! One clue only is filled in. I have high hopes that Rose will rescue me tomorrow. I used to be good at crosswords ...
In the evening Marilyn stopped by again, which was very much appreciated. She did not stay long, but left me a copy of the Standard, so now I have an easy crossword to give me back some self-respect!
On the treatment front, my liver function returned to normal today, so I was given a Glivec (Imatinib) tablet, which is effective for PH+ ALL (as I think I have blogged before). I feel a bit more tired and sick than earlier in the week, but I guess this is to be expected. They gave me an extra anti-sickness tab,and that perked me up a bit.
I find my mind wandering to philosophical questions; I think that one must have a reason for living over and above just ... living. Certainly I do! Since my short term goal is really just that, it makes life a little colourless. Gosh, how maudlin! When I get through this Rose and I will revisit South Africa, and once again sample the delights of Franschhoek, Stellenbosch and the surrounding areas - reason enough for me eh!
- Posted using BlogPress from my iPad
Location:London
Wednesday 12 January 2011
A short stroll in the West End
Yesterday one of the nurses reminded me that I will soon be neutropenic, and before it happens I could go out for some fresh air. So, today when Rose arrived we popped out for a stroll down Grafton Way across Tottenham Court Road and on to a small green square called Fitzroy Square. Numerous "blue plaques", one of which showing Virginia Woolf lived there for a couple of years. We called in at Sainsbury's on the way back for a sandwich (which I consumed this afternoon!). Although it was a very short walk, it was quite tiring.
When we got back we settled down to try the next crossword in the book, and it is a stinker. I must admit I resorted to the Internet, and even then we did not make much progress. Some of the answers: "volost", "spermaceti", "decemviri"; only in the Times eh! How many of those words do you know?
Rose left at her normal time, and I rested/struggled on with the crossword. In the evening Marilyn came back, this time armed with some good book recommendations:) for which I am very grateful.
My neutrophil count is coming down (as it should), so I will be prone to infection in the coming days. I still welcome visitors, but may keep my distance a bit more. The nurses tell me that it is more likely to be bacteria that I am carrying myself that will get me rather than anything brought in. But once again, I ask that if you have the slightest hint of a suggestion of a cold then it is better to stay away.
On a cheerier note, I thought I would share some of Rose and my Christmas photos. Some time I will write down our traditions, but for now here is a look at the wine we imbibed this year:
The highlight was definitely the 1998 Bienvenue Batard Montrachet which is a Grand Cru vineyard at Puligny in Burgundy. This is without doubt the finest Chardonnay, if not the finest white wine in the world, and it was truly delicious.
I must inform you that not all these bottles were emptied on the day (the Puligny and the Volnay did not survive), the Champagne and the Sauternes did last a few days more!
- Posted using BlogPress from my iPad
When we got back we settled down to try the next crossword in the book, and it is a stinker. I must admit I resorted to the Internet, and even then we did not make much progress. Some of the answers: "volost", "spermaceti", "decemviri"; only in the Times eh! How many of those words do you know?
Rose left at her normal time, and I rested/struggled on with the crossword. In the evening Marilyn came back, this time armed with some good book recommendations:) for which I am very grateful.
My neutrophil count is coming down (as it should), so I will be prone to infection in the coming days. I still welcome visitors, but may keep my distance a bit more. The nurses tell me that it is more likely to be bacteria that I am carrying myself that will get me rather than anything brought in. But once again, I ask that if you have the slightest hint of a suggestion of a cold then it is better to stay away.
On a cheerier note, I thought I would share some of Rose and my Christmas photos. Some time I will write down our traditions, but for now here is a look at the wine we imbibed this year:
The highlight was definitely the 1998 Bienvenue Batard Montrachet which is a Grand Cru vineyard at Puligny in Burgundy. This is without doubt the finest Chardonnay, if not the finest white wine in the world, and it was truly delicious.
I must inform you that not all these bottles were emptied on the day (the Puligny and the Volnay did not survive), the Champagne and the Sauternes did last a few days more!
- Posted using BlogPress from my iPad
Location:London,United Kingdom
Tuesday 11 January 2011
A short review of number9dream by David Mitchell
The book is set in Japan, mostly Tokyo, of the now or very near future (hard for me to say never having been there!). It wraps up a story of a young man's search for his father with a series of dreams and other stories. In fact, the whole story is rather comic-book in nature, involving gangsters, violence, and the underbelly of Tokyo.
I rather enjoyed it, but I suspect it is more of a boy's book. And of course it also involves the inevitable first love of the hero (in a somewhat cliched sub-plot). The writing is intelligent and entertaining as one would expect from Mitchell. The book does end somewhat abruptly, and I could not tell if Mitchell was trying to tell me something or just felt he had written as much as he could; maybe someone who has read it can enlighten me!
And why is it that everyone thinks the Israeli Mossad have all the coolest gadgets?
- Posted using BlogPress from my iPad
I rather enjoyed it, but I suspect it is more of a boy's book. And of course it also involves the inevitable first love of the hero (in a somewhat cliched sub-plot). The writing is intelligent and entertaining as one would expect from Mitchell. The book does end somewhat abruptly, and I could not tell if Mitchell was trying to tell me something or just felt he had written as much as he could; maybe someone who has read it can enlighten me!
And why is it that everyone thinks the Israeli Mossad have all the coolest gadgets?
- Posted using BlogPress from my iPad
The PICC line is up and running
Yesterday I thought I would have to wait until today to see if the PICC line was installed OK, but actually the XRay was reviewed last night and I got another dose of the expensive anti-fungal drug which finished infusing at about 9pm.
Today has been a pleasant day of visitors. This morning my other brother Harry came to visit and kindly gave some blood to be matched for a donor. I am very grateful that I have two brothers! Whilst chatting with Harry, Rose arrived bearing clean clothes. Actually, also wearing clean clothes apparently, as a nurse commented that the room smelled of freshly laundered clothes (and it cannot be me).
I was hooked up to a new (to me) chemo drug called PEG-asparaginase. It took just over two hours to infuse, but once again (touch wood) I do not seem to have reacted adversely to it. There is one more drug I am waiting for which is the Glivec that helps with Philadelphia positive ALL, but my liver is still not ready for it apparently. I have a couple of days off the chemo for now, but enough drug talk ...
Tuesday and Friday are the consultants round, and he duly showed up at about 12:30. Not much to say this time; I think we are all clear where things stand.
Rose left at her usual time, but very soon afterwards Tom turned up to visit. Tom was a key man in my Dublin team back in 2001/2002 and we stayed friends after the project ended. It helps that he has a lovely wife (Venessa), isn't it funny how we sad loser blokes seem to be able to attract smart women! And whilst Tom was here Marilyn came back after missing me yesterday, so a jolly time was had by all (well, by me anyway:). Marilyn is probably the most voracious reader I know, and she is in a book club, but a bit reticent in giving personal recommendations! We did discuss Gentlemen and Players though (spoiling it for Tom should he ever remember).
It was Tom's birthday this week, and he brought me some birthday cake - chocolate fudge cake, and very nice too.
I am going to load a blogging app that claims to support blogger.com to see if it helps me writing the blog, so you will see the results tomorrow (if it is any good). I have nearly finished the David Mitchell and will review later in this blog.
I very much appreciate all your comments and emails, so many thanks. I hope to see some old friends this week, and I am looking forward to it.
Still no appetite for games though; something or someone is going to have to push me ...
Today has been a pleasant day of visitors. This morning my other brother Harry came to visit and kindly gave some blood to be matched for a donor. I am very grateful that I have two brothers! Whilst chatting with Harry, Rose arrived bearing clean clothes. Actually, also wearing clean clothes apparently, as a nurse commented that the room smelled of freshly laundered clothes (and it cannot be me).
I was hooked up to a new (to me) chemo drug called PEG-asparaginase. It took just over two hours to infuse, but once again (touch wood) I do not seem to have reacted adversely to it. There is one more drug I am waiting for which is the Glivec that helps with Philadelphia positive ALL, but my liver is still not ready for it apparently. I have a couple of days off the chemo for now, but enough drug talk ...
Tuesday and Friday are the consultants round, and he duly showed up at about 12:30. Not much to say this time; I think we are all clear where things stand.
Rose left at her usual time, but very soon afterwards Tom turned up to visit. Tom was a key man in my Dublin team back in 2001/2002 and we stayed friends after the project ended. It helps that he has a lovely wife (Venessa), isn't it funny how we sad loser blokes seem to be able to attract smart women! And whilst Tom was here Marilyn came back after missing me yesterday, so a jolly time was had by all (well, by me anyway:). Marilyn is probably the most voracious reader I know, and she is in a book club, but a bit reticent in giving personal recommendations! We did discuss Gentlemen and Players though (spoiling it for Tom should he ever remember).
It was Tom's birthday this week, and he brought me some birthday cake - chocolate fudge cake, and very nice too.
I am going to load a blogging app that claims to support blogger.com to see if it helps me writing the blog, so you will see the results tomorrow (if it is any good). I have nearly finished the David Mitchell and will review later in this blog.
I very much appreciate all your comments and emails, so many thanks. I hope to see some old friends this week, and I am looking forward to it.
Still no appetite for games though; something or someone is going to have to push me ...
Monday 10 January 2011
An eventful day
It has been a very eventful day, and now I will try and summarise it for you...
Rose arrived in the morning, bearing laptop and camera so that we could try and get some pictures for this blog. I managed to copy the photos to the iPad, but then I have to cross the hurdle of uploading them here. Browsing local is just not an option! So, I downloaded an app called Web Albums that let's me upload photos from the iPad to the web, and they are now uploaded at picasa. From there, I just about managed it.
Whilst we were learning this, a nurse came to tell that I had an appointment with the dentist! This was over the road int the outpatient building, so I tasted freedom and fresh air. The dentist is on the 6th floor; I managed three flights and then we took the elevator. The dentist then sent me for an XRay, which led me to the A&E department because the dental machine in the normal XRay is broken. We got back to my room at about 1pm. Lunch today was pretty bad, but fortunately Rose brought some good old home cooking which she heated in the micro for me. It makes me realise how spoilt I was at home having fresh ingredients cooked each day, rather than the processed, packaged pap they serve here in the hospital.
Here I am in my room:
This is the room:
This is the unprepossessing view from the window:
After Rose left (having helped me solve the current crossword puzzle), the transplant nurse came to see me. She explained that if neither of brother is a match, they will search the global records of donors, which is actually 14.5 million! On the downside, my Eastern European Jewish roots restrict the chances somewhat. She said it is impossible to give a percentage for me, and anyway I still have hope in my blood brothers! It takes 2 weeks to get the match results, so awaiting game still.
Next in was the chemo nurse advising me that my next chemo dose is due (which I was expecting). But hot on her heels were the PICC team, saying they had a cancellation and they could insert my line right now! The PICC team won, and duly inserted it. They find a vein in your arm using an ultrasound scanner and my veins were nice and big. Then they numb the entry point with local anaesthetic and insert the line, above the elbow joint on the inside. It goes up your arm, across you shoulder and down into the superior vena cava just above the heart. I then went for a chest XRay to make sure it went where it is supposed to! Sometimes the line goes up to the neck or across to the other side. I will find out tomorrow if it went OK, but all the signs indicate that it did.
Sadly, whilst I was down in XRay, Marilyn popped by for a visit, and I thank her very much for thinking of me. She works locally so I am sure I will get to see her soon, but it is always a shame to miss a visitor. It is funny that I have been happy working at home on my own for years without missing human interaction too much. But once in hospital it is something to be treasured. I think it is about focus and goals and things (most of which evaporate under the stress of illness).
Still no TV. BT have a service for WiFi access all over, and I downloaded the iPhone app to use it, but it just tells me the iPad version is coming soon. I am not sure I would be near enough a hot-spot up here on the 13th floor anyway. The hospital does not seem to have a WiFi access point, at least not that the iPad can hook up to. So, that leaves me with 3G for the foreseeable.
One of the PICC nurses is an appleophile, and she said I had to play "angry birds" but somehow just the name leaves me uninspired. One day maybe ...
Rose arrived in the morning, bearing laptop and camera so that we could try and get some pictures for this blog. I managed to copy the photos to the iPad, but then I have to cross the hurdle of uploading them here. Browsing local is just not an option! So, I downloaded an app called Web Albums that let's me upload photos from the iPad to the web, and they are now uploaded at picasa. From there, I just about managed it.
Whilst we were learning this, a nurse came to tell that I had an appointment with the dentist! This was over the road int the outpatient building, so I tasted freedom and fresh air. The dentist is on the 6th floor; I managed three flights and then we took the elevator. The dentist then sent me for an XRay, which led me to the A&E department because the dental machine in the normal XRay is broken. We got back to my room at about 1pm. Lunch today was pretty bad, but fortunately Rose brought some good old home cooking which she heated in the micro for me. It makes me realise how spoilt I was at home having fresh ingredients cooked each day, rather than the processed, packaged pap they serve here in the hospital.
Here I am in my room:
 |
| From Ian and Leukaemia |
This is the room:
 |
| From Ian and Leukaemia |
This is the unprepossessing view from the window:
 |
| From Ian and Leukaemia |
After Rose left (having helped me solve the current crossword puzzle), the transplant nurse came to see me. She explained that if neither of brother is a match, they will search the global records of donors, which is actually 14.5 million! On the downside, my Eastern European Jewish roots restrict the chances somewhat. She said it is impossible to give a percentage for me, and anyway I still have hope in my blood brothers! It takes 2 weeks to get the match results, so awaiting game still.
Next in was the chemo nurse advising me that my next chemo dose is due (which I was expecting). But hot on her heels were the PICC team, saying they had a cancellation and they could insert my line right now! The PICC team won, and duly inserted it. They find a vein in your arm using an ultrasound scanner and my veins were nice and big. Then they numb the entry point with local anaesthetic and insert the line, above the elbow joint on the inside. It goes up your arm, across you shoulder and down into the superior vena cava just above the heart. I then went for a chest XRay to make sure it went where it is supposed to! Sometimes the line goes up to the neck or across to the other side. I will find out tomorrow if it went OK, but all the signs indicate that it did.
Sadly, whilst I was down in XRay, Marilyn popped by for a visit, and I thank her very much for thinking of me. She works locally so I am sure I will get to see her soon, but it is always a shame to miss a visitor. It is funny that I have been happy working at home on my own for years without missing human interaction too much. But once in hospital it is something to be treasured. I think it is about focus and goals and things (most of which evaporate under the stress of illness).
Still no TV. BT have a service for WiFi access all over, and I downloaded the iPhone app to use it, but it just tells me the iPad version is coming soon. I am not sure I would be near enough a hot-spot up here on the 13th floor anyway. The hospital does not seem to have a WiFi access point, at least not that the iPad can hook up to. So, that leaves me with 3G for the foreseeable.
One of the PICC nurses is an appleophile, and she said I had to play "angry birds" but somehow just the name leaves me uninspired. One day maybe ...
Sunday 9 January 2011
Sunday afternoon
I am currently receiving my clinical trial drug Rituximab. It is not a chemo treatment, but it is an anti-body that eats the cells which have the CD20 marker. Fortunately I have not reacted badly to the drug, but it is taking hours to empty the bag, so I have been hooked up to the pump most of the day.
My eldest brother Les came to visit today, and also gave blood to see if he is a match for a donor. The chances are 25%, so I am keeping my fingers crossed. My other brother Harry is coming on Tuesday hopefully. Getting a match is the next big hurdle in this game of numbers. My chances of survival are not good without a transplant, so I need a donor. If neither brother is a match, UCH will search the Anthony Nolan Register (which is a database of about 400,000 volunteer donors) for a match to me. There is about a 50% chance of one of these matching. They told me that there is no point in friends or other relatives being tested for match as individually the odds are too low. But by all means you can join the Anthony Nolan register if you like (but your decision should be based on considerations other than me).
I have spectacularly failed to get the iPad to play any BBC from the iPlayer. It does not seem to work with 3G access. So I have been reading, and welcome recommendations from all and sundry, remembering my preference for good literature rather than pulp fiction.
I have downloaded and read Gentlemen and Players by Joanne Harris from kindle, and I enjoyed it. I followed up by downloading from iBooks (to be fair) number9dream by David Mitchell (he also wrote Cloud Atlas which I can recommend), and I am reading it now. In truth, the kindle and iBooks reader apps are not that dissimilar; after all you really just concentrate on the text. I found that both work best in portrait mode. Maybe as I become more expert I will use some of the features, but for now only the bookmark (which they both have) seems essential.
Les recommended Pandora's Star by Peter F Hamilton, so I have that also, this time from kindle. The iBooks titles seem to be bit cheaper, but maybe that was just chance.
The weight of hours to fill presses heavily, especially in the evenings, the time normally for eating, drinking, and being merry with Rose. I am glad I have something to keep me diverted. I got a book of Times crosswords for Christmas (cryptic crosswords are my big pastime, and the Times are the best), but I am struggling to get into them. Of course I can cheat with the Internet, but to paraphrase Asimov, finishing a crossword using the Internet is the last refuge of the incompetent!
I cannot find any enthusiasm for playing games on this iPad. If anyone has any recommendations then maybe I will give something a try. Post to the blog, or if too embarrassed :) email me directly!
My eldest brother Les came to visit today, and also gave blood to see if he is a match for a donor. The chances are 25%, so I am keeping my fingers crossed. My other brother Harry is coming on Tuesday hopefully. Getting a match is the next big hurdle in this game of numbers. My chances of survival are not good without a transplant, so I need a donor. If neither brother is a match, UCH will search the Anthony Nolan Register (which is a database of about 400,000 volunteer donors) for a match to me. There is about a 50% chance of one of these matching. They told me that there is no point in friends or other relatives being tested for match as individually the odds are too low. But by all means you can join the Anthony Nolan register if you like (but your decision should be based on considerations other than me).
I have spectacularly failed to get the iPad to play any BBC from the iPlayer. It does not seem to work with 3G access. So I have been reading, and welcome recommendations from all and sundry, remembering my preference for good literature rather than pulp fiction.
I have downloaded and read Gentlemen and Players by Joanne Harris from kindle, and I enjoyed it. I followed up by downloading from iBooks (to be fair) number9dream by David Mitchell (he also wrote Cloud Atlas which I can recommend), and I am reading it now. In truth, the kindle and iBooks reader apps are not that dissimilar; after all you really just concentrate on the text. I found that both work best in portrait mode. Maybe as I become more expert I will use some of the features, but for now only the bookmark (which they both have) seems essential.
Les recommended Pandora's Star by Peter F Hamilton, so I have that also, this time from kindle. The iBooks titles seem to be bit cheaper, but maybe that was just chance.
The weight of hours to fill presses heavily, especially in the evenings, the time normally for eating, drinking, and being merry with Rose. I am glad I have something to keep me diverted. I got a book of Times crosswords for Christmas (cryptic crosswords are my big pastime, and the Times are the best), but I am struggling to get into them. Of course I can cheat with the Internet, but to paraphrase Asimov, finishing a crossword using the Internet is the last refuge of the incompetent!
I cannot find any enthusiasm for playing games on this iPad. If anyone has any recommendations then maybe I will give something a try. Post to the blog, or if too embarrassed :) email me directly!
Saturday 8 January 2011
My first chemo
Last night (they were running a bit late) I had my first chemo treatment. The chemicals are quite strong, and I was vey pleased that the nurse was experienced using a cannula to administer them (if there is a problem with the cannula they can burn the tissue). For the geeks among you, the drugs were Vincristine (a colourless liquid), followed by Daunorubicin (a bright red liquid). A lot of saline is used too!
In addition to the chemo and the myriad of prophylactics (including IV anti-sickness), I am also taking a corticosteroid called Dexamethasone. This is taken orally in ten very small pills. The steroids are supposed to make you very alert and sleepless, but I slept pretty normally. I am taking these four days on / three says off for the duration.
Despite the myriad of side-effects that are listed, I am pleased to say I only had a mild stomach cramp. All that cold fluid injected into your blood does make you cold though, and I needed a hot coffee afterwards to get warm!
The good news is that the predicted period of well being has come to pass (largely due to the steroids). I have not taken any pain relief since yesterday lunch, and I am in no pain now. I will enjoy it while it lasts.
Whilst I was chatting with the chemo nurse about the treatment, we strayed to the topic of transplants, and at last I think I understand why the risks are greater. During induction, the doses of chemo are strictly limited, according to weight and height (they weigh me every day). This is to allow the bone marrow to recover and continue producing cells. However, for a transplant, the doses are limited only by the ability of the recipient to cope with them; the idea is to shut down the bone marrow's ability to function, and then reboot it with the harvested donor stem cells. It says this in the literature and the web sites, but until now I did not really grasp it fully.
Later on, the registrar returned to inform me that the analysis of my cancer indicates that I have Philadelphia-positive ALL, which was to be expected, and why a transplant really is required for me. They treat this with an extra drug called Gleevec (or Imatinib) taken orally.
Rose returned for another long visit which was nice. She was able to buy me some sandwiches to supplement my lunch. In addition to the alertness, the steroids also boost appetite (later to be suppressed by other drugs apparently).
Just before Rose arrived, I had a reflexology session by the complimentary therapy team! I have never had any of these self-pampering things before, but needless to say it was very pleasant and relaxing. This complimentary therapy is available to all cancer patients funded by a charity. She asked me what I normally do to relax - crossword puzzles I replied; it soon became clear that this was not quite the answer she was looking for!
I installed both kindle and iBooks, but the paucity of titles on iBooks makes it of only very limited use. I bought a book from kindle to get started, but the kindle app is not as nice as iBooks. I suspect it will be easier for Amazon to improve their app then for Apple to get 750,000 titles on iBooks! It looks like with only 3G access, TV is not going to be viable, but I have not verified it as I still cannot get the BBC iPlayer to work (it did play a radio show once, but not even that any ore, it just keeps hanging). They have a way to go with mobile.
In addition to the chemo and the myriad of prophylactics (including IV anti-sickness), I am also taking a corticosteroid called Dexamethasone. This is taken orally in ten very small pills. The steroids are supposed to make you very alert and sleepless, but I slept pretty normally. I am taking these four days on / three says off for the duration.
Despite the myriad of side-effects that are listed, I am pleased to say I only had a mild stomach cramp. All that cold fluid injected into your blood does make you cold though, and I needed a hot coffee afterwards to get warm!
The good news is that the predicted period of well being has come to pass (largely due to the steroids). I have not taken any pain relief since yesterday lunch, and I am in no pain now. I will enjoy it while it lasts.
Whilst I was chatting with the chemo nurse about the treatment, we strayed to the topic of transplants, and at last I think I understand why the risks are greater. During induction, the doses of chemo are strictly limited, according to weight and height (they weigh me every day). This is to allow the bone marrow to recover and continue producing cells. However, for a transplant, the doses are limited only by the ability of the recipient to cope with them; the idea is to shut down the bone marrow's ability to function, and then reboot it with the harvested donor stem cells. It says this in the literature and the web sites, but until now I did not really grasp it fully.
Later on, the registrar returned to inform me that the analysis of my cancer indicates that I have Philadelphia-positive ALL, which was to be expected, and why a transplant really is required for me. They treat this with an extra drug called Gleevec (or Imatinib) taken orally.
Rose returned for another long visit which was nice. She was able to buy me some sandwiches to supplement my lunch. In addition to the alertness, the steroids also boost appetite (later to be suppressed by other drugs apparently).
Just before Rose arrived, I had a reflexology session by the complimentary therapy team! I have never had any of these self-pampering things before, but needless to say it was very pleasant and relaxing. This complimentary therapy is available to all cancer patients funded by a charity. She asked me what I normally do to relax - crossword puzzles I replied; it soon became clear that this was not quite the answer she was looking for!
I installed both kindle and iBooks, but the paucity of titles on iBooks makes it of only very limited use. I bought a book from kindle to get started, but the kindle app is not as nice as iBooks. I suspect it will be easier for Amazon to improve their app then for Apple to get 750,000 titles on iBooks! It looks like with only 3G access, TV is not going to be viable, but I have not verified it as I still cannot get the BBC iPlayer to work (it did play a radio show once, but not even that any ore, it just keeps hanging). They have a way to go with mobile.
Friday 7 January 2011
Settling in to UCH
It has been quite a busy day today, my first "full" day in hospital. I am currently waiting for the first cycle of chemotherapy treatment to begin. A nurse has inserted a Cannula to administer the drugs; although they thought yesterday I would get the PICC line today, in fact this will not happen until Tuesday (at which point the cannula will be removed). As I write this, I am receiving a prophylactic dose of an anti-fungal drug (very expensive at £750 a bag!).
The consultant visited today (Tuesdays and Fridays), with his entourage of trainees, nurses and so on. It was very informative. He told me that my best chance of long term survival is a stem cell transplant, and that a relative as donor is the best bet. Each of my two brothers has a one in four chance of being a match, so this gives me almost a 50-50 (7/16) chance that one of them will be suitable. The transplant procedure carries risks, but if successful is my best hope for a long term cure. It will not happen until after the induction phase of the chemo is over (read that booklet I linked!), so I will return to this topic and all the various risks and outcomes later on, when I know more.
In addition, I learned that my cancer cells have a marker called CD20. Other cancers that have this marker have been shown to be successfully treated with a drug called Rituximab. Although this is not normally used in the treatment of ALL, clinical trials are being run to ascertain it's effectiveness, and since I have the marker my consultant has decided to include it in the drug regime. It has no long term side effects, but I may react badly on first dose (which will be Sunday). Wikipedia has something to say: http://en.wikipedia.org/wiki/Rituximab
I have also been given the timetable for the first cycle of chemotherapy. It lasts just over three weeks, followed by a recovery period, and then I will get some time off at home before being readmitted for the second cycle. The big variable is infection; as the chemo kills my White cells, the probability of infection nears 1! The infection could be relatively minor, or quite major and even life threatening. My initial stay is therefore dependent on how this plays out. If you are thinking of visiting me after about a week from now (all visitors gratefully welcomed), please refrain if you have the slightest symptom of a cold (sore throat, runny nose, anything).
Whilst I remember, if you do visit, ignore the sign outside the ward that says not to visit between 1pm and 3pm; this applies only to the guinacology ward opposite. You can visit me anytime.
Rose came this morning and we made a start on the paperwork for my critical illness insurance claim. This is one insurance policy I had rather hoped I would never be making a claim on!
After Rose left at about 3pm, I got a surprise visit from my old friend Pete who I was at school with, and so apart from family is the person in the world whom I have known the longest. Pete was at Cambridge with Patrick, and is how I had the fortune to make his acquaintance. Pete had just dropped his son off at UCL (the university with which the hospital is linked). We had a nice chat for an hour, and he promised to email some book recommendations, so maybe I will read something on this iPad at some point (although there does not seem to be much time).
My next action will be to try and find a decent email client for this iPad! You would think that the good Mr Jobs would have insisted on all four of the core apps being superb, but the mail client is very much the poor relation (safari, pictures and iPod all being pretty good).
The consultant visited today (Tuesdays and Fridays), with his entourage of trainees, nurses and so on. It was very informative. He told me that my best chance of long term survival is a stem cell transplant, and that a relative as donor is the best bet. Each of my two brothers has a one in four chance of being a match, so this gives me almost a 50-50 (7/16) chance that one of them will be suitable. The transplant procedure carries risks, but if successful is my best hope for a long term cure. It will not happen until after the induction phase of the chemo is over (read that booklet I linked!), so I will return to this topic and all the various risks and outcomes later on, when I know more.
In addition, I learned that my cancer cells have a marker called CD20. Other cancers that have this marker have been shown to be successfully treated with a drug called Rituximab. Although this is not normally used in the treatment of ALL, clinical trials are being run to ascertain it's effectiveness, and since I have the marker my consultant has decided to include it in the drug regime. It has no long term side effects, but I may react badly on first dose (which will be Sunday). Wikipedia has something to say: http://en.wikipedia.org/wiki/Rituximab
I have also been given the timetable for the first cycle of chemotherapy. It lasts just over three weeks, followed by a recovery period, and then I will get some time off at home before being readmitted for the second cycle. The big variable is infection; as the chemo kills my White cells, the probability of infection nears 1! The infection could be relatively minor, or quite major and even life threatening. My initial stay is therefore dependent on how this plays out. If you are thinking of visiting me after about a week from now (all visitors gratefully welcomed), please refrain if you have the slightest symptom of a cold (sore throat, runny nose, anything).
Whilst I remember, if you do visit, ignore the sign outside the ward that says not to visit between 1pm and 3pm; this applies only to the guinacology ward opposite. You can visit me anytime.
Rose came this morning and we made a start on the paperwork for my critical illness insurance claim. This is one insurance policy I had rather hoped I would never be making a claim on!
After Rose left at about 3pm, I got a surprise visit from my old friend Pete who I was at school with, and so apart from family is the person in the world whom I have known the longest. Pete was at Cambridge with Patrick, and is how I had the fortune to make his acquaintance. Pete had just dropped his son off at UCL (the university with which the hospital is linked). We had a nice chat for an hour, and he promised to email some book recommendations, so maybe I will read something on this iPad at some point (although there does not seem to be much time).
My next action will be to try and find a decent email client for this iPad! You would think that the good Mr Jobs would have insisted on all four of the core apps being superb, but the mail client is very much the poor relation (safari, pictures and iPod all being pretty good).
Thursday 6 January 2011
Diagnosis, admittance and other stories
I have decided to at least start a blog, but I make no commitment on continuing or finishing it - only time will tell.
I write from room 10, T13 North Main tower of UCH in London, not far from Euston station. The T13 bit refers to the 13th floor - the view is due east along Euston Road; apart from a few buildings in the City to the South East, the view is not very prepossessing. This place will be my home for several weeks, so I guess I should get used to it!
It has been a hectic few days since the New Year. On Tuesday (4th) I had a bone marrow biopsy, on Wednesday met the consultant and was finally diagnosed with acute lymphoblastic leukaemia (ALL), and today I was admitted. I rushed out to buy an iPad (3G - no WiFi here), put a sane OOO message on my work email, packed and left. Rose (my other, better half) came with me, and helped me settle in. It was hard saying goodbye ... but let me try and avoid too much self pity:)
You can read about ALL on the web; http://www.cancerhelp.org.uk/type/all/?script=true, and a more detailed booklet at http://www.beatbloodcancers.org/sites/default/files/ALL%20booklet_1.pdf
I am left wondering if all this rush is because
a - it is just the normal course of events
b - my case is so severe no time must be wasted
c - my case is such an early stage, the chance of survival will be greatly enhanced
The head says a, the heart says c (for after all, this is the best of all possible worlds)
I first started feeling unwell in October (but not very). When it persisted I went to my GP and his first reaction was "come back in a few days if you aren't feeling better". Then I had the first of three sets of blood tests, the results of the last one being available on Christmas Eve. This last set of results caused the consultant haematologist at my local hospital to think I probably had acute myeloid leukaemia (or AML, a diagnosis which subsequently was changed to ALL after the bone marrow biopsy). The surgery left a message for me to call, but I did not get it unti after it was closed for Christmas. At 4pm the GP turned up at our door, and although he did not say it in so many words, we knew it was leukaemia. I saw the haematologist at my local hospital on December 29th, and she transferred me to UCH.
Just in passing, The most painful symptom of ALL that I have is bone pain and I have been taking pain killers (codeine and paracetamol) that makes it bearable. I have been told that when the chemotherapy starts, this pain will disappear and I will have a comfortable period before the side effects of the treatment kick in. As you now know - I am an optimist!
I feel that I am at the beginning of a long journey and rather unsurprisingly sleep does not beckon. Tomorrow they will insert the picc line through which the chemotherapy is supplied, and start the treatment.
Sometime I hope to post about the iPad - so much hype it just could never live up to it really. But still, I think it was the correct purchase
I write from room 10, T13 North Main tower of UCH in London, not far from Euston station. The T13 bit refers to the 13th floor - the view is due east along Euston Road; apart from a few buildings in the City to the South East, the view is not very prepossessing. This place will be my home for several weeks, so I guess I should get used to it!
It has been a hectic few days since the New Year. On Tuesday (4th) I had a bone marrow biopsy, on Wednesday met the consultant and was finally diagnosed with acute lymphoblastic leukaemia (ALL), and today I was admitted. I rushed out to buy an iPad (3G - no WiFi here), put a sane OOO message on my work email, packed and left. Rose (my other, better half) came with me, and helped me settle in. It was hard saying goodbye ... but let me try and avoid too much self pity:)
You can read about ALL on the web; http://www.cancerhelp.org.uk/type/all/?script=true, and a more detailed booklet at http://www.beatbloodcancers.org/sites/default/files/ALL%20booklet_1.pdf
I am left wondering if all this rush is because
a - it is just the normal course of events
b - my case is so severe no time must be wasted
c - my case is such an early stage, the chance of survival will be greatly enhanced
The head says a, the heart says c (for after all, this is the best of all possible worlds)
I first started feeling unwell in October (but not very). When it persisted I went to my GP and his first reaction was "come back in a few days if you aren't feeling better". Then I had the first of three sets of blood tests, the results of the last one being available on Christmas Eve. This last set of results caused the consultant haematologist at my local hospital to think I probably had acute myeloid leukaemia (or AML, a diagnosis which subsequently was changed to ALL after the bone marrow biopsy). The surgery left a message for me to call, but I did not get it unti after it was closed for Christmas. At 4pm the GP turned up at our door, and although he did not say it in so many words, we knew it was leukaemia. I saw the haematologist at my local hospital on December 29th, and she transferred me to UCH.
Just in passing, The most painful symptom of ALL that I have is bone pain and I have been taking pain killers (codeine and paracetamol) that makes it bearable. I have been told that when the chemotherapy starts, this pain will disappear and I will have a comfortable period before the side effects of the treatment kick in. As you now know - I am an optimist!
I feel that I am at the beginning of a long journey and rather unsurprisingly sleep does not beckon. Tomorrow they will insert the picc line through which the chemotherapy is supplied, and start the treatment.
Sometime I hope to post about the iPad - so much hype it just could never live up to it really. But still, I think it was the correct purchase
Subscribe to:
Posts (Atom)