We are experiencing a late September heat wave here in the UK, and very pleasant it is too, although somewhat confusing for the plants, who think it must be Spring already!
I had a long day in the hospital on Monday, waiting to have my intrathecal treatment. They took blood for a coagulation screen at 11:00, and the results did not come back until after 4pm. I eventually got home at 7 o'clock! The procedure went very smoothly - at least I suppose it did; I was sedated and so missed it all! This was (hopefully) my last Monday clinic. I now move to Thursdays bi-weekly; my next appointment is for next Thursday 6th October.
I am still getting phlegm. I can fool myself into thinking it is better than the weekend, but in reality it is probably the same. If I still have it next Thursday I will raise it again with the doctor.
Thursday 29 September 2011
Saturday 24 September 2011
T+93: Phlegm
For the last few days I have been coughing a bit of phlegm. Nothing that would even remotely concern an otherwise healthy person, but just to be on the safe side (and at Rose's suggestion) I rang the BMT clinic and told them about it. My tongue is also a little green! The nurse said she would talk to the doctor, and 10 minutes later they rang back and asked be to come in to the hospital to get checked out! They sent a taxi pretty quickly too! The doctor saw me right away, and she thought it was probably an infection (certainly not GVHD). She was very unconcerned about my tongue, but sent me for a chest x-ray to make sure my lungs were clear, and told me to double my antibiotic dose for 5 days (I take antibiotics every day at a low dose as a prophylactic). After being so well for the last week or two this is a little disappointing, but I hope it will prove to be short-lived.
Today I went on my very first demo march! The utility company Veolia is planning to build an incinerator in Hatfield, and we marched in protest. The weather was nice and there was a good turnout; there was much shouting and blowing of horns. Of course the real protest will be for all local people to write to the council and oppose planning permission, which we most certainly will do.
Today I went on my very first demo march! The utility company Veolia is planning to build an incinerator in Hatfield, and we marched in protest. The weather was nice and there was a good turnout; there was much shouting and blowing of horns. Of course the real protest will be for all local people to write to the council and oppose planning permission, which we most certainly will do.
Thursday 22 September 2011
T+91: Continued good health
It has been an uneventful week. My health continues to be good, and they have reduced my ciclosporin to just one 25mg tablet per day (the lowest possible dose).
There is a good article on wikipedia about bone marrow transplants here, which discusses the "mixed chimerism" effect where both my stem cells and my brothers stem cells exist in my bone marrow. On Monday they will take blood samples to perform a baseline for the mixed chimerism tests, and also check for any leukaemic cells. They then do another set of tests in 3 months time and compare to the baseline. At that time I will know more about the efficacy of the transplant. It is hoped that the graft-versus-leukaemia effect will have killed most if not all of my stem cells ... if there are too many of my cells left there are some remedial actions that can be taken, for example injecting me with some mature donor lymphocytes (white cells).
A few other things ...
Because my immune system is deemed to be a bit stronger, I no longer get exclusive use of transport to take me to and from the clinic; I have to share with other patients living nearby. When the clinic switches to Thursday bi-weekly (in October) I will have to drive myself.
Yesterday we visited Rose's parents in Shropshire, and I drove all the way home (2 3/4 hours). When we went on car journeys in the past, we had to make "comfort" breaks for Rose; now it is I who need them more due to my continued intake of 3 litres!
This week I managed to play 18 holes of golf from the tees, walking. I only scored 20 Stableford points, but it is an achievement I am proud of.
There is a good article on wikipedia about bone marrow transplants here, which discusses the "mixed chimerism" effect where both my stem cells and my brothers stem cells exist in my bone marrow. On Monday they will take blood samples to perform a baseline for the mixed chimerism tests, and also check for any leukaemic cells. They then do another set of tests in 3 months time and compare to the baseline. At that time I will know more about the efficacy of the transplant. It is hoped that the graft-versus-leukaemia effect will have killed most if not all of my stem cells ... if there are too many of my cells left there are some remedial actions that can be taken, for example injecting me with some mature donor lymphocytes (white cells).
A few other things ...
Because my immune system is deemed to be a bit stronger, I no longer get exclusive use of transport to take me to and from the clinic; I have to share with other patients living nearby. When the clinic switches to Thursday bi-weekly (in October) I will have to drive myself.
Yesterday we visited Rose's parents in Shropshire, and I drove all the way home (2 3/4 hours). When we went on car journeys in the past, we had to make "comfort" breaks for Rose; now it is I who need them more due to my continued intake of 3 litres!
This week I managed to play 18 holes of golf from the tees, walking. I only scored 20 Stableford points, but it is an achievement I am proud of.
Thursday 15 September 2011
T+84: Planning
My health continues to be OK, and I am slowly getting a very basic level of fitness back. At the back of my mind is the fact that my long term chances of survival are still not so good, but there is no point in thinking about it since I cannot affect it. With my continuing good health and returning fitness we are starting to make plans ...
This week I wrote to my HR department advising them that I will be able to return to work full time starting at the beginning of October. In the meantime I have started to try and get back involved with work related issues. I think I will find the discipline of working quite tough to start with, but I am looking forward to it.
We are planning a trip in October to Honfleur in northern France, to have a posh dinner with our friends Cees and Claude who live in Normandy. We can drive down using Eurotunnel and so avoid crowded places (which I am still a bit wary of). Honfleur is one of our favourite places; here I am at the "Vieux Bassin" in 1995:
This week I wrote to my HR department advising them that I will be able to return to work full time starting at the beginning of October. In the meantime I have started to try and get back involved with work related issues. I think I will find the discipline of working quite tough to start with, but I am looking forward to it.
We are planning a trip in October to Honfleur in northern France, to have a posh dinner with our friends Cees and Claude who live in Normandy. We can drive down using Eurotunnel and so avoid crowded places (which I am still a bit wary of). Honfleur is one of our favourite places; here I am at the "Vieux Bassin" in 1995:
Thursday 8 September 2011
T+77: Reduced ciclosporin
After clinic on Monday, they have reduced my ciclosporin intake again, down to 25mg twice a day. This is because the creatinine level in my kidneys continues to creep up, despite the reduction last week. Now I am seriously expecting GVHD to develop in some way, although my fingers are crossed that it will not.
They have scheduled an intrathecal procedure (lumbar puncture) for the end of the month. This is to kill any leukemic cells that may be lurking in my central nervous system. They do this post-transplant for reduced intensity transplants (as in my case), once every three months for a year. In the past, I have had some not very positive experiences of this procedure (it relies on the proficiency of the doctor), so I have asked for sedation. The regime of the second round of chemo (in April) called for one intrathecal per week, and this gave me very bad headaches, so I am a bit nervous about having more, but they assure me it is worthwhile.
Aside from these worries, I am well, and hopefully regaining my strength little by little every day. The nausea is all but gone and I remain optimistic (as ever). If only it would stop raining in New York so we could see some tennis!
They have scheduled an intrathecal procedure (lumbar puncture) for the end of the month. This is to kill any leukemic cells that may be lurking in my central nervous system. They do this post-transplant for reduced intensity transplants (as in my case), once every three months for a year. In the past, I have had some not very positive experiences of this procedure (it relies on the proficiency of the doctor), so I have asked for sedation. The regime of the second round of chemo (in April) called for one intrathecal per week, and this gave me very bad headaches, so I am a bit nervous about having more, but they assure me it is worthwhile.
Aside from these worries, I am well, and hopefully regaining my strength little by little every day. The nausea is all but gone and I remain optimistic (as ever). If only it would stop raining in New York so we could see some tennis!
Sunday 4 September 2011
Ordering photos on an iPad
When photos are sync'd from iTunes to an iPad, the order they appear in on the iPad is not filename order. The apple support website says that the photos are sorted by various date tags in the EXIF metadata stored in the JPEG, most notably the EXIF tag "DateTimeOriginal". I think this tag is also known as "Capture date", but for sure it shows up in Windows 7 Explorer as "Date taken". None of my photos had this tag set (the field shows empty in Explorer).
I googled various posts on this issue, some of which indicate that clearing the EXIF metadata completely before sync'ing makes the photos sort by filename when they get to the iPad ... however this did not work for me.
My first attempt was to write a Java program to set DateTimeOriginal using the Apache sanselan library for reading and writing image metadata. Although my program seemed to work, and the "Date taken" was showing in Explorer, after sync'ing the photos were still in the wrong order ... very vexing!
Whilst googling, I came across a utility called ExifTool (google for it), and its companion ExifToolGui. This program has a feature to set the EXIF DateTimeOriginal tag in a group of selected JEG files - i.e. the same thing as the program I wrote; however, after usng the tool and sync'ing the photos, it worked! The precise sequence of events is
* Run ExifToolGui
* Select all the photos you want to change
* From the menu, choose Modify and Exif Date/Time set and incremement ...
* Select DateTimeOriginal as the date, and enter the start and increment
* Click Execute
* When done, sync in iTunes
If you need to do this, I wish you good luck!
I googled various posts on this issue, some of which indicate that clearing the EXIF metadata completely before sync'ing makes the photos sort by filename when they get to the iPad ... however this did not work for me.
My first attempt was to write a Java program to set DateTimeOriginal using the Apache sanselan library for reading and writing image metadata. Although my program seemed to work, and the "Date taken" was showing in Explorer, after sync'ing the photos were still in the wrong order ... very vexing!
Whilst googling, I came across a utility called ExifTool (google for it), and its companion ExifToolGui. This program has a feature to set the EXIF DateTimeOriginal tag in a group of selected JEG files - i.e. the same thing as the program I wrote; however, after usng the tool and sync'ing the photos, it worked! The precise sequence of events is
* Run ExifToolGui
* Select all the photos you want to change
* From the menu, choose Modify and Exif Date/Time set and incremement ...
* Select DateTimeOriginal as the date, and enter the start and increment
* Click Execute
* When done, sync in iTunes
If you need to do this, I wish you good luck!
T+73: The end of summer
Summer is coming to an end, with cool and rainy weather forecast for September here in the UK. But yesterday it was still warm and sunny, so Rose and I had a round of golf. I still only swing a short iron, so rather than playing from the tees I drop a ball and approach from 100 yards or so. And of course I use a buggy to get round the course. Here is my approach at the 3rd
In the original you can see the ball flying toward the green (honestly). We had a good time, and Rose played very well, shooting another round in the mid eighties; it won't be long until her handicap is cut. This time I managed to play all the holes, and I was not as tired afterwards, so I am definitely getting stronger.
The nausea has settled down quite a lot with the anti-sickness regime. I still feel a bit rough in the mornings, but by 10 it has normally gone. Until now, with the reduced ciclosporin, I have not had any GVHD, but I don't know how long it takes after reducing the dosage for the level in my blood to fall.
We have been using a photo scanning bureau to digitize our old photos (from the prints, we lost the negatives) and by and large it is very successful. The only problems have been when the bureau scans them in the wrong order. It is easy to rename the files on the laptop, but when sync'd to the iPad they come out in the original (wrong) order - i.e. ignoring the file name. My next blog post explains how I overcame this.
In the original you can see the ball flying toward the green (honestly). We had a good time, and Rose played very well, shooting another round in the mid eighties; it won't be long until her handicap is cut. This time I managed to play all the holes, and I was not as tired afterwards, so I am definitely getting stronger.
The nausea has settled down quite a lot with the anti-sickness regime. I still feel a bit rough in the mornings, but by 10 it has normally gone. Until now, with the reduced ciclosporin, I have not had any GVHD, but I don't know how long it takes after reducing the dosage for the level in my blood to fall.
We have been using a photo scanning bureau to digitize our old photos (from the prints, we lost the negatives) and by and large it is very successful. The only problems have been when the bureau scans them in the wrong order. It is easy to rename the files on the laptop, but when sync'd to the iPad they come out in the original (wrong) order - i.e. ignoring the file name. My next blog post explains how I overcame this.
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