I had never intended that this Blog become a day-by-day, blow-by-blow account of my battle with cancer.
One reality that has become pretty apparent pretty quickly, is that this is much more a war of attrition than anything else. The chemo is a slow, laborious process that might (slightly better than 50% chance) result in victory - but we won't really know anything for at least another four months.
After just over week on chemo, what do I know? I know that the weekend after a Day One will be bearably unpleasant (maybe 6.5/10 on my personal wellness scale?). I know that if this last week and a half is anything to go by, my fears about chemo are pretty much unfounded. Each day since last Monday I've felt better, until the last two days I would rate myself as 9/10 - and frankly, I need artificial stimulants these days to feel much beter than that in the normal course of things. I know that I will lose my hair sometime next week, but I'm not in the slightest bit concerned about that. I know that just because I've had few in the way of side affects that it won't necessarily be like that for each cycle.
And what do I think? I think I'm going to be relatively unaffected by the chemo, based upon my experiences so far. I think that I'll get used to the tiredeness and lack of energy towards the end of each day. And I'm pretty sure that I'm going to have a decent outcome.
From here on, I'm going to add to the blog only every week or so - that should mean that I'll have something to add that's informative, rather than have it all a stream of consciousness thing.
Sunday 24 June 2007
Saturday 16 June 2007
Post-chemo post #1
Saturday morning, C1D3 (that's Cycle One, Day Three for those who weren't paying attention earlier). Things are proceeding pretty well a couple of days after the first chemo session, with very little real effect at this stage.
For the record, the drugs I am having are: C1D1, epirubison and cysplatin, and constantly infused, 5FU (5-fluorouracil). In the States, according to the bulletin boards I've been reading, I think I would be having oxaliplatin instead of the cysplatin. My oncologist has no idea why they use that over there.
I spent Thursday morning in the chemo unit hooked up to various bits and pieces for about four hours, watching others come and go as they went through their regimes - some just in for an hour or so, others for a couple of hours. I was the only one who stayed the entire morning session. There were maybe 17 people through the unit in the time I was there. I sat next to a woman for some time who was in her third attempt in 18 months to kill off ovarian cancer - she said she was becoming less hopeful each treatment.
After the chemo, I was checked into the ward for the afternoon and night as a precautionary measure. I re-met a few nurses who were there just eight weeks ago when I had the dreaded gastroscopy that detected the cancer. Anyway, I was so full of anti-nausea drugs that I felt fine for the whole time - a little cotton-woolly in the head perhaps, but pretty good. And of course, no vomitting at all, which I think surprised everybody a little, but surely that was the point of the medication! Maybe its a propitious omen.
I came home mid-morning yesterday, and had a restful day, apart from wandering down for after-work drinkies (mineral water) with a few of the troops from work. Very pleasant and normal. I also had a decent couple of hours sleep during the afternoon, which I obviously needed after a fairly restless Thursday night.
This morning, Gaye and I took the dog for a a forty minute walk, and that wasn't too taxing either, so I hope its not too early to say "I'm back!"
Now for the downside. When I was changing from jimjams into walking gear this morning, for a few short seconds I was ...... nude .......... except for the belt which holds up the walkman-sized chemo pump which I wear on my left hip. I caught a glimpse of myself in the mirror, and I have to say that I have seen few stranger sights than me with all my new plumbing exposed! All over my chest, tubes running this way and that, descending to a couple of loops around the black pack on the hip - and the belt. And of course the dressings covering the portacath, which is in itself quite a visible presence on my chest. No wonder Gaye was finding it difficult to control herself!!
Another very small side affect is that I make funny noises when I move. The point of the needle in the portacath is scratching against the back plate, and every time I move my arm - to walk, for instance - there is quite an obvious scratching noise. I'll no doubt get used to it, and it will be a great party trick for the kids when they get down here next week.
For the record, the drugs I am having are: C1D1, epirubison and cysplatin, and constantly infused, 5FU (5-fluorouracil). In the States, according to the bulletin boards I've been reading, I think I would be having oxaliplatin instead of the cysplatin. My oncologist has no idea why they use that over there.
I spent Thursday morning in the chemo unit hooked up to various bits and pieces for about four hours, watching others come and go as they went through their regimes - some just in for an hour or so, others for a couple of hours. I was the only one who stayed the entire morning session. There were maybe 17 people through the unit in the time I was there. I sat next to a woman for some time who was in her third attempt in 18 months to kill off ovarian cancer - she said she was becoming less hopeful each treatment.
After the chemo, I was checked into the ward for the afternoon and night as a precautionary measure. I re-met a few nurses who were there just eight weeks ago when I had the dreaded gastroscopy that detected the cancer. Anyway, I was so full of anti-nausea drugs that I felt fine for the whole time - a little cotton-woolly in the head perhaps, but pretty good. And of course, no vomitting at all, which I think surprised everybody a little, but surely that was the point of the medication! Maybe its a propitious omen.
I came home mid-morning yesterday, and had a restful day, apart from wandering down for after-work drinkies (mineral water) with a few of the troops from work. Very pleasant and normal. I also had a decent couple of hours sleep during the afternoon, which I obviously needed after a fairly restless Thursday night.
This morning, Gaye and I took the dog for a a forty minute walk, and that wasn't too taxing either, so I hope its not too early to say "I'm back!"
Now for the downside. When I was changing from jimjams into walking gear this morning, for a few short seconds I was ...... nude .......... except for the belt which holds up the walkman-sized chemo pump which I wear on my left hip. I caught a glimpse of myself in the mirror, and I have to say that I have seen few stranger sights than me with all my new plumbing exposed! All over my chest, tubes running this way and that, descending to a couple of loops around the black pack on the hip - and the belt. And of course the dressings covering the portacath, which is in itself quite a visible presence on my chest. No wonder Gaye was finding it difficult to control herself!!
Another very small side affect is that I make funny noises when I move. The point of the needle in the portacath is scratching against the back plate, and every time I move my arm - to walk, for instance - there is quite an obvious scratching noise. I'll no doubt get used to it, and it will be a great party trick for the kids when they get down here next week.
Sunday 10 June 2007
A difficult decision
I've come to a decision over the last couple of days, after a fair amount of agonising: I've decided not to attend the Gawler program until after I've completed chemo, i.e. in October or November, depending upon timing . My main reason is so that I can give my full attention to the chemo process. If I wanted to go to Gawler, I would have had to have taken a ten day break in chemo, and after some thought, I don't see how that would be particularly useful. And if the chemo goes well, then Gawler will be a valuable addition to my therapy. If chemo doesn't have the impact I hope for, then Gawler becomes the last shot in my magazine, and will probably be more potent because of that.
In the meantime, we have had an almost decadent long weekend so far, with two sleep-ins and a long walk today with Oscar (the dog) - almost two hours. Alas, no bike rides yet, but maybe tomorrow.
As we grazed at breakfast, Gaye happened on our stars in one of the Sunday paper magazines. I quote them without comment.
Pisces (me): Making no choices absolves some people of taking responsibility for their own lives. You've been very courageous setting out to follow your own path. This has been stressful, but soon it will bring delightful rewards. Some great news in the week ahead!
Taurus (Gaye): You have been steeling yourself for an earth-shattering, heart-wrenching change. You need not fear. The change that's about to take place is essentially a change of attitude, not circumstances. You will see that all is due to be much as it was, only better. Life is about to bring you something special.
In a similar spirit, I decided to test the predictions above using my own methods (actually a variation of Kabala as I understand it). I allowed one of my favourite books, Dave Pelz's Putting Bible to fall open at a random page. With my eyes closed, I then placed my finger, once again entirely at random, on the page that opened before me. Look at the passage I touched:
It's time to move on, from describing and discussing the 15 building blocks of putting to explaining a few other influences. But I want to warn you of something [my emphasis - TD]. If you go out and try to put all I've said in this and the last few chapters to work immediately, before you finish reading this book, you might become confused and give up, reverting to your old "gut-feel" putting. I don't want that to happen [once again, my emphasis - TD].
Now that is truly spooky. Next time, I am going to see if I get similarly appropriate messages from The Chappell Years. Stay reading
In the meantime, we have had an almost decadent long weekend so far, with two sleep-ins and a long walk today with Oscar (the dog) - almost two hours. Alas, no bike rides yet, but maybe tomorrow.
As we grazed at breakfast, Gaye happened on our stars in one of the Sunday paper magazines. I quote them without comment.
Pisces (me): Making no choices absolves some people of taking responsibility for their own lives. You've been very courageous setting out to follow your own path. This has been stressful, but soon it will bring delightful rewards. Some great news in the week ahead!
Taurus (Gaye): You have been steeling yourself for an earth-shattering, heart-wrenching change. You need not fear. The change that's about to take place is essentially a change of attitude, not circumstances. You will see that all is due to be much as it was, only better. Life is about to bring you something special.
In a similar spirit, I decided to test the predictions above using my own methods (actually a variation of Kabala as I understand it). I allowed one of my favourite books, Dave Pelz's Putting Bible to fall open at a random page. With my eyes closed, I then placed my finger, once again entirely at random, on the page that opened before me. Look at the passage I touched:
It's time to move on, from describing and discussing the 15 building blocks of putting to explaining a few other influences. But I want to warn you of something [my emphasis - TD]. If you go out and try to put all I've said in this and the last few chapters to work immediately, before you finish reading this book, you might become confused and give up, reverting to your old "gut-feel" putting. I don't want that to happen [once again, my emphasis - TD].
Now that is truly spooky. Next time, I am going to see if I get similarly appropriate messages from The Chappell Years. Stay reading
Wednesday 6 June 2007
Chemo: yuck!!
Well, I might have been a bit hasty in describing my upcoming chemo (to nearly everybody I spoke to) as fairly easy, low dose enabled by the fact that my cancer is slow-growing and relatively non-aggressive. The chemo regime I start next Thursday is a very aggressive one made possible only by the fact that I am relatively young and fit! Well, thanks for that, I 'spose.
So, here's what I know. The surgeons have pretty much given up on me because of the lymph node secondaries, and I've pretty much given up on them because of the brutality of the Whipple. So my future is solidly in the hands of the oncologist, Paul Craft. At the end of the treatment regime described below, we will re-assess based on the outcome: more chemo, or back off for a while because we've knocked it on the head, and wait a couple of years for it to re-occur - or not!
So from next Thursday, I start a 21 day cycle of chemo which starts with near-lethal doses of two somethings or other, administered in the hospital during a 4-5 hour stay, followed by 20 days of a lethal cocktail called 5F, 24/7. Then start again, and then again, and again, and again and again. Six cycles in all, finishing in early October.
Possible symptoms include: tinnitus, numbness in hands and feet, loss of taste for some food, and loss of appetite ("a good thing that you've got a bit to spare, Tony"), partial hearing loss, skin rashes of various degrees of seriousness, loss of skin from hands and feet, darkening of the skin a la Maurie Carr (!), nausea (especially after the start of each cycle), and tiredness. "Oh, and you WILL lose your hair." "But the doctor said....." "Honestly, he doesn't see the results, he just prescribes the drugs!". Once again, thanks very much. I think I'll ask my mum to knit a beanie for me, and there was a notice in the reception area for wig of all styles and colours.
One good thing, tho, is that I'll be able to shower because the little wellhead in my chest is really nifty. A bit of tennis can and may happen, too.
The main nurse, Fiona, is extremely competent and pleasant. The unit itself has a nice feel to it, 10 or 12 recliners around the room , with tables alongside to put books and papers on. The main injecting room is a little sparse, but the kids there seem nice, and I'm sure I'll settle in okay once I understand what the playground rules are. I sort of expect to see some kids over and over again, as our cycles co-incide. Presumably, some will drop off the perch (but not me!), and we'll be joined by new kids.
Paul Craft (oncolgist) fills me with confidence.
In the middle of all this, I have registered for the Gawler Foundation 10 day program in August, so we'll have to figure out what to do about that in terms of chemo.
Nothing more till next week, probably Friday after my first little dose of poisons. In the meantime, I intend to enjoy my last weekend for a while as a "normal" person. Tomorrow, I will get my hair cut as short as I can stand it. A couple of rides over the weekend, too. Oh, and perhaps an indian meal at Pearce shops.
Bye for now.
So, here's what I know. The surgeons have pretty much given up on me because of the lymph node secondaries, and I've pretty much given up on them because of the brutality of the Whipple. So my future is solidly in the hands of the oncologist, Paul Craft. At the end of the treatment regime described below, we will re-assess based on the outcome: more chemo, or back off for a while because we've knocked it on the head, and wait a couple of years for it to re-occur - or not!
So from next Thursday, I start a 21 day cycle of chemo which starts with near-lethal doses of two somethings or other, administered in the hospital during a 4-5 hour stay, followed by 20 days of a lethal cocktail called 5F, 24/7. Then start again, and then again, and again, and again and again. Six cycles in all, finishing in early October.
Possible symptoms include: tinnitus, numbness in hands and feet, loss of taste for some food, and loss of appetite ("a good thing that you've got a bit to spare, Tony"), partial hearing loss, skin rashes of various degrees of seriousness, loss of skin from hands and feet, darkening of the skin a la Maurie Carr (!), nausea (especially after the start of each cycle), and tiredness. "Oh, and you WILL lose your hair." "But the doctor said....." "Honestly, he doesn't see the results, he just prescribes the drugs!". Once again, thanks very much. I think I'll ask my mum to knit a beanie for me, and there was a notice in the reception area for wig of all styles and colours.
One good thing, tho, is that I'll be able to shower because the little wellhead in my chest is really nifty. A bit of tennis can and may happen, too.
The main nurse, Fiona, is extremely competent and pleasant. The unit itself has a nice feel to it, 10 or 12 recliners around the room , with tables alongside to put books and papers on. The main injecting room is a little sparse, but the kids there seem nice, and I'm sure I'll settle in okay once I understand what the playground rules are. I sort of expect to see some kids over and over again, as our cycles co-incide. Presumably, some will drop off the perch (but not me!), and we'll be joined by new kids.
Paul Craft (oncolgist) fills me with confidence.
In the middle of all this, I have registered for the Gawler Foundation 10 day program in August, so we'll have to figure out what to do about that in terms of chemo.
Nothing more till next week, probably Friday after my first little dose of poisons. In the meantime, I intend to enjoy my last weekend for a while as a "normal" person. Tomorrow, I will get my hair cut as short as I can stand it. A couple of rides over the weekend, too. Oh, and perhaps an indian meal at Pearce shops.
Bye for now.
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