Bulletin Eight: April/May 2006
OK, OK......I said there'd be copies of the previous editions and you're wondering why we've skipped straight from issue one to issue eight?
Technical difficulties, of course!
But rather than let this hold up the whole shebang, I thought I'd get on with letting you know what's been happening here at sicky central.
Firstly, You may have noticed a distinct delay in producing this issue. I wish I could blame this on the hours of intensive work I've put in to get this online but, unfortunately, I can't, as it took me all of an hour and a half (but don't tell anyone else). Instead I shall put it down to a combination of illness and ennui. There's only so much to be said about these four walls and the inside of my head after all.
I had poisoning number four of the planned six on March 28th, which was followed by the usual unpleasant week or so, but, rather than recover, I then went into another dip. I thought I'd felt tired before, but obviously not! In fact, I was a bundle of energy compared to the shambling zombie that my siblings had to put up with during their Easter weekend visit to the capital - thanks folks and sorry 'bout that.
So, I just picked up in time to be poisoned again ........number five on April 18th. Thankfully my reaction this time wasn't quite as extreme, but I can certainly feel that the chemo is building up it's effect, as expected, and I'm just generally more fatigued than I was at the start of all of this.
So what have I been doing with myself.........
Well, indulging in musical piracy via the net, and musical nostalgia via the digitising of twenty year old tapes of 'F*** the Drummer' whose logo was the cupcake you see on the left. I was proud to be the rhythm guitarist, sometime vocalist, and undoubtedly least talented, member of this fine beat combo.
For those who weren't there at the time, which will be almost everyone as the band did outnumber the audience on this occasion, I'm the one with the hair.
Never ones to miss an auspicious astral coincidence, this picture, taken in May 1984, commemorates a performance timed to provide
the soundtrack for a partial eclipse of the sun.
No sniggering at the back please......
Behind the musicians, you may notice someone who appears to be trying to block out the noise.
In fact this noble individual had foolishly volunteered to make a recording of the whole event, not realising that many of our songs tended to be rather extreme in length. You see him monitoring the sound prior to making fine adjustments to his sensitive hi-tech recording apparatus (see left). I believe he subsequently
went on to work as a recording engineer with U2.............or perhaps not.
I'm sure you'll all be delighted to hear that CD's of this historic performance are still available at a very reasonable price, with all proceeds going to St. Lymphoma's.
Speaking of that august institution reminds me that you may have seen it featured in the national newspapers over the last couple of months, as a result of it laying off 500 of it's staff. I was hoping that there'd be noone left to poison me, but sadly haematology services seem to have been unaffected by these changes.
Knowing that this course of treatment was drawing to a close, my thoughts have begun to turn more and more to what might happen next. At the clinic appointment immediately prior to my fourth chemo, the doctor assured me that he could see no reason why I would need to have a transplant if things continued as they had been. Oh happy news!
At the next clinic appointment I inquired of another doctor what she thought was the most likely next step in my treatment. "A bone marrow transplant" she replied.
Confused patient!
Thankfully, I was rapidly able to get an appointment with the Big Cheese in order to clarify things. That's him over there. Now I must admit to having expressed doubts about the professors 'bedside manner' in previous issues, but on this occasion he was most sympathetic and very clear. So, I will endeavour to be just as clear in passing on what he said to me..........
Technical difficulties, of course!
But rather than let this hold up the whole shebang, I thought I'd get on with letting you know what's been happening here at sicky central.
Firstly, You may have noticed a distinct delay in producing this issue. I wish I could blame this on the hours of intensive work I've put in to get this online but, unfortunately, I can't, as it took me all of an hour and a half (but don't tell anyone else). Instead I shall put it down to a combination of illness and ennui. There's only so much to be said about these four walls and the inside of my head after all.
I had poisoning number four of the planned six on March 28th, which was followed by the usual unpleasant week or so, but, rather than recover, I then went into another dip. I thought I'd felt tired before, but obviously not! In fact, I was a bundle of energy compared to the shambling zombie that my siblings had to put up with during their Easter weekend visit to the capital - thanks folks and sorry 'bout that.
So, I just picked up in time to be poisoned again ........number five on April 18th. Thankfully my reaction this time wasn't quite as extreme, but I can certainly feel that the chemo is building up it's effect, as expected, and I'm just generally more fatigued than I was at the start of all of this.
So what have I been doing with myself.........
Well, indulging in musical piracy via the net, and musical nostalgia via the digitising of twenty year old tapes of 'F*** the Drummer' whose logo was the cupcake you see on the left. I was proud to be the rhythm guitarist, sometime vocalist, and undoubtedly least talented, member of this fine beat combo.
For those who weren't there at the time, which will be almost everyone as the band did outnumber the audience on this occasion, I'm the one with the hair.
Never ones to miss an auspicious astral coincidence, this picture, taken in May 1984, commemorates a performance timed to provide
the soundtrack for a partial eclipse of the sun.No sniggering at the back please......
Behind the musicians, you may notice someone who appears to be trying to block out the noise.
In fact this noble individual had foolishly volunteered to make a recording of the whole event, not realising that many of our songs tended to be rather extreme in length. You see him monitoring the sound prior to making fine adjustments to his sensitive hi-tech recording apparatus (see left). I believe he subsequently
went on to work as a recording engineer with U2.............or perhaps not.I'm sure you'll all be delighted to hear that CD's of this historic performance are still available at a very reasonable price, with all proceeds going to St. Lymphoma's.
Speaking of that august institution reminds me that you may have seen it featured in the national newspapers over the last couple of months, as a result of it laying off 500 of it's staff. I was hoping that there'd be noone left to poison me, but sadly haematology services seem to have been unaffected by these changes.
Knowing that this course of treatment was drawing to a close, my thoughts have begun to turn more and more to what might happen next. At the clinic appointment immediately prior to my fourth chemo, the doctor assured me that he could see no reason why I would need to have a transplant if things continued as they had been. Oh happy news!
At the next clinic appointment I inquired of another doctor what she thought was the most likely next step in my treatment. "A bone marrow transplant" she replied.
Confused patient!
Thankfully, I was rapidly able to get an appointment with the Big Cheese in order to clarify things. That's him over there. Now I must admit to having expressed doubts about the professors 'bedside manner' in previous issues, but on this occasion he was most sympathetic and very clear. So, I will endeavour to be just as clear in passing on what he said to me..........
What might happen next.............
Three weeks after my final chemo session, I'll have another CT scan and a bone marrow biopsy and then be seen again in clinic on 4th June. It'll be the results of these tests that determine what will happen to me after that. There are a number of possibilities:
If the scan/biopsy are clear of any signs of cancer .................. Remission
Then the first thing to do will be to watch and wait. 15-20% of patients who achieve complete remission after their first chemo cycle require no further treatment (please let that be me!).
If, as is still likely, the cancer does return then the next step will depend upon the length of any remission. If I've been in remission only for a relatively short period (6months...3 years) prior to the cancer's return, then I'll have another cycle of chemo followed by a bone marrow transplant. If the remission is longer then it's less easy to predict what might be done as new forms of treatment may be available by then.
If the scan/biopsy show signs of cancer..................
Then what happens next depends upon how much cancer is detected. If the scan results are the same or worse than the mid chemo scan then it'll be more chemo and a transplant. If the cancer has reduced to a minimal level and I am 'well', then I'll be said to have achieved Partial Remission - and it's likely that there may be a period of watch and wait to see if the cancer will remain stable at this level without affecting my daily life. It's likely though that in the end this too will mean more chemo and probably a transplant sooner rather than later.
Sadly, even a transplant offers no guarantee of a complete cure and comes with a 10% mortality rate as well as the possibility of significant side effects.
So there you have it! it's not a cheerful set of options but, strangely enough, I just feel very relieved to finally understand what the options are and the logic behind each possible choice. I plan to do some research to try and prepare myself better for any choices that I might need to make, and my two lucky siblings are being tested to see if either of them would be a suitable stem cell donor. Oh, and I've given up smoking (again and again........)
Thank you to everyone for their interest and support. We really appreciate it.
I suspect that I'll not issue another full bulletin until after 4th June, but do please drop in at St. Lymphoma's site anytime as I'm sure I won't be able to resist posting more bits and pieces. If you want to leave a comment or message then just click on the word comments in blue below or the envelope if you want to send e mail!
Lots of Love
Dave
Three weeks after my final chemo session, I'll have another CT scan and a bone marrow biopsy and then be seen again in clinic on 4th June. It'll be the results of these tests that determine what will happen to me after that. There are a number of possibilities:
If the scan/biopsy are clear of any signs of cancer .................. Remission
Then the first thing to do will be to watch and wait. 15-20% of patients who achieve complete remission after their first chemo cycle require no further treatment (please let that be me!).
If, as is still likely, the cancer does return then the next step will depend upon the length of any remission. If I've been in remission only for a relatively short period (6months...3 years) prior to the cancer's return, then I'll have another cycle of chemo followed by a bone marrow transplant. If the remission is longer then it's less easy to predict what might be done as new forms of treatment may be available by then.
If the scan/biopsy show signs of cancer..................
Then what happens next depends upon how much cancer is detected. If the scan results are the same or worse than the mid chemo scan then it'll be more chemo and a transplant. If the cancer has reduced to a minimal level and I am 'well', then I'll be said to have achieved Partial Remission - and it's likely that there may be a period of watch and wait to see if the cancer will remain stable at this level without affecting my daily life. It's likely though that in the end this too will mean more chemo and probably a transplant sooner rather than later.
Sadly, even a transplant offers no guarantee of a complete cure and comes with a 10% mortality rate as well as the possibility of significant side effects.
So there you have it! it's not a cheerful set of options but, strangely enough, I just feel very relieved to finally understand what the options are and the logic behind each possible choice. I plan to do some research to try and prepare myself better for any choices that I might need to make, and my two lucky siblings are being tested to see if either of them would be a suitable stem cell donor. Oh, and I've given up smoking (again and again........)
Thank you to everyone for their interest and support. We really appreciate it.
I suspect that I'll not issue another full bulletin until after 4th June, but do please drop in at St. Lymphoma's site anytime as I'm sure I won't be able to resist posting more bits and pieces. If you want to leave a comment or message then just click on the word comments in blue below or the envelope if you want to send e mail!
Lots of Love
Dave
posted by St. Lymphoma's Little Helper at Sunday, April 30, 2006
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