Four out of five days of the heavy dose of chemo. I'm not feeling quite as bad as I did the previous cycle. I guess the body gets used to it to a certain extent. My hands have even been steady enough to do a bit of soldering.
Olga and I were enormously cheered to read the comment posted this afternoon by Tara Stevens to my post back in August about clomipramine. She writes that her mother was diagnosed with inoperable brain cancer and had aggressive breast cancer as well and was given six months to live. After taking clomipramine both tumours eventually disappeared and she has beaten the doctors' prognosis by six years!
If Tara's mum can do it so can I. We'll beat that bugger!
27 December - Third chemotherapy cycle
Christmas is over. I hope you all had a good one. Ours was fine - quiet, spent at home enjoying some nice food and watching undemanding TV.
I allowed myself two small glasses of wine with dinner on Christmas Eve and Christmas Day. I did feel a bit tipsy later on, but that is pretty much how I feel most of the time at the moment so I don't think I can really blame the wine. Nor was it necessarily responsible for the slight headache I had on Christmas morning, as I didn't have one on Boxing Day morning. But I'm not in a hurry to try wine again as I haven't been missing it that much anyway.
On Boxing Day I started the third chemotherapy cycle. 400mg of temozolomide a day for the next 5 days. So I'm preparing for a couple of weeks of feeling crappy and lethargic. My mouth is already starting to feel like the inside of a sumo wrestler's jockstrap. No pain, no gain as they say.
I allowed myself two small glasses of wine with dinner on Christmas Eve and Christmas Day. I did feel a bit tipsy later on, but that is pretty much how I feel most of the time at the moment so I don't think I can really blame the wine. Nor was it necessarily responsible for the slight headache I had on Christmas morning, as I didn't have one on Boxing Day morning. But I'm not in a hurry to try wine again as I haven't been missing it that much anyway.
On Boxing Day I started the third chemotherapy cycle. 400mg of temozolomide a day for the next 5 days. So I'm preparing for a couple of weeks of feeling crappy and lethargic. My mouth is already starting to feel like the inside of a sumo wrestler's jockstrap. No pain, no gain as they say.
23 December - Nothing To Report
Just a brief update following our hospital visit this afternoon. Nothing To Report. My blood count is OK so we are all set to start the third chemo cycle next week.
I'm not getting an MRI scan any time soon. Olga and I would really like to see evidence that we are beating the tumour but according to the doctor, a scan this soon after radiotherapy could give misleading results due to side effects of the treatment. The tumour could actually appear to have got bigger. I probably won't get a scan for another 4 months.
The best sign that there is nothing to worry about is that I don't experience tumour symptoms such as headaches, seizures or vomiting. So I just have to be a patient patient and keep on taking the tablets.
Meanwhile, Christmas starts now! I hope yours is a happy one too!
I'm not getting an MRI scan any time soon. Olga and I would really like to see evidence that we are beating the tumour but according to the doctor, a scan this soon after radiotherapy could give misleading results due to side effects of the treatment. The tumour could actually appear to have got bigger. I probably won't get a scan for another 4 months.
The best sign that there is nothing to worry about is that I don't experience tumour symptoms such as headaches, seizures or vomiting. So I just have to be a patient patient and keep on taking the tablets.
Meanwhile, Christmas starts now! I hope yours is a happy one too!
22 December - Looking forward to Christmas
Looking forward to Christmas. Not that life isn't like one long holiday now. :) But tomorrow afternoon we have an appointment with the consultant in Carlisle, just to remind me that it isn't one. I'm not expecting to learn anything new. There isn't time for me to have an MRI scan while I'm there. It's just for a blood count to confirm that I'm OK to start the third cycle of chemotherapy. And to collect the tablets, which hopefully the hospital pharmacy will have in stock this time!
I'm feeling slightly better each day. I'm certainly up for Christmas dinner now! But my brain is still running slow. And I wish I could get rid of the unsteadiness on my feet, for which reason I have never, in all the time since I came out of hospital at the end of June, gone anywhere without Olga by my side to take my hand if I feel I'm going to fall.
I have a problem with stairs. I even have a bit of a problem with the stairs at home. Fortunately at home there is a bannister I can grip when descending so if I stumble I don't fall. But faced with even just a couple of steps down and nothing to hang on to, like the steps to the street from one of the older shops in town, and I'm in big trouble. I wonder if I'll ever again climb one of the Lakeland fells. It's not a matter of not having the strength to climb, it's getting vertigo when I have to descend.
The other annoying problem I have is that whenever I do go for a walk by the end I'm sweating profusely. By the time I'm home I've soaked through two layers of clothing. I have to lie down and relax for 15 or 20 minutes until I have stopped sweating, then have a shower and a change of clothes. It's a bind, and makes me reluctant to go out, though I need the exercise and do feel better after it.
I've put on about 5 kilos since all this started. I used to be 88kg (though trying to get down to 85) but now I'm up to 93kg. But it's Christmas and I'm off the chemo for a few more days so to hell with it, I'll eat drink and be merry. Tomorrow I'll diet.
I'm feeling slightly better each day. I'm certainly up for Christmas dinner now! But my brain is still running slow. And I wish I could get rid of the unsteadiness on my feet, for which reason I have never, in all the time since I came out of hospital at the end of June, gone anywhere without Olga by my side to take my hand if I feel I'm going to fall.
I have a problem with stairs. I even have a bit of a problem with the stairs at home. Fortunately at home there is a bannister I can grip when descending so if I stumble I don't fall. But faced with even just a couple of steps down and nothing to hang on to, like the steps to the street from one of the older shops in town, and I'm in big trouble. I wonder if I'll ever again climb one of the Lakeland fells. It's not a matter of not having the strength to climb, it's getting vertigo when I have to descend.
The other annoying problem I have is that whenever I do go for a walk by the end I'm sweating profusely. By the time I'm home I've soaked through two layers of clothing. I have to lie down and relax for 15 or 20 minutes until I have stopped sweating, then have a shower and a change of clothes. It's a bind, and makes me reluctant to go out, though I need the exercise and do feel better after it.
I've put on about 5 kilos since all this started. I used to be 88kg (though trying to get down to 85) but now I'm up to 93kg. But it's Christmas and I'm off the chemo for a few more days so to hell with it, I'll eat drink and be merry. Tomorrow I'll diet.
14 December - Eye test
Went for an eye test this afternoon. The consultant oncologist suggested I have this done when I mentioned to him that I often had blurred vision. But as I expected there is nothing wrong with my eyes as such. Nothing new wrong, anyway. My prescription has hardly changed since my eyes were last tested by him a couple of years ago. So my vision problems are probably caused by the medication and I'll just have to put up with it until I'm taking fewer tablets and my brain has a chance to adapt to some of these side effects.
My peripheral vision was tested on a machine where you have to push a button to record how many green dots you can see. I missed a few because my attention tends to wander after a while. Olga has noticed this before. Sometimes she sees me sitting and asks what I'm thinking about. I reply "Sometimes I sits and thinks, and sometimes I just sits!"
My peripheral vision was tested on a machine where you have to push a button to record how many green dots you can see. I missed a few because my attention tends to wander after a while. Olga has noticed this before. Sometimes she sees me sitting and asks what I'm thinking about. I reply "Sometimes I sits and thinks, and sometimes I just sits!"
13 December - Feeling a bit better
This has been the first day after I took the last of the big dose of temozolomide that I have started feeling a bit better. I have begun showing an interest in more foods and I've also started to find the energy and interest to do things instead of vegetating in my recliner. I guess I have to get used to the idea that the first couple of weeks of each chemo cycle are going to be basically a write-off.
Only four more cycles to go. At least (as I mentioned in my previous post) I don't have to start again until after Christmas.
Only four more cycles to go. At least (as I mentioned in my previous post) I don't have to start again until after Christmas.
4 December - Off the temozolomide
I've been off the temozolomide for a couple of days now. Still feeling mildly nauseous. Not enough to be in any real danger of throwing up, but enough that I probably would not bother to eat if Olga hadn't gone to the trouble of putting food in front of me.
Fortuitously, I am not due the next batch of poison until just after the Christmas festivities. Hopefully my appetite will be restored by then. I do like my roast turkey and Christmas pudding, not to mention my Camembert and a nice piece of crumbly Cheddar.
I normally also enjoy a glass or three of red wine to go with the aforementioned items so it has been quite a hardship having to avoid alcohol for the last few months. Alcohol is not exactly prohibited, particularly by the chemotherapy, but it is recommended to avoid it if you take clomipramine as it increases the side effects. Unfortunately clomipramine is not one of those drugs you can just stop taking for a few days. You have to change the dose gradually. So I can't just come off it for a Christmas / New Year break.
All being well I will allow myself a trial glass of wine on Christmas Eve to see what happens. If that causes no ill effects then I have two more days to finish the bottle before my next batch of chemotherapy tablets. Because although as I said the warnings about alcohol don't apply to the temozolomide, I think that taking alcohol along with with temo, clomipramine, dexomethazone and all the other tablets would be a bit too much.
Fortuitously, I am not due the next batch of poison until just after the Christmas festivities. Hopefully my appetite will be restored by then. I do like my roast turkey and Christmas pudding, not to mention my Camembert and a nice piece of crumbly Cheddar.
I normally also enjoy a glass or three of red wine to go with the aforementioned items so it has been quite a hardship having to avoid alcohol for the last few months. Alcohol is not exactly prohibited, particularly by the chemotherapy, but it is recommended to avoid it if you take clomipramine as it increases the side effects. Unfortunately clomipramine is not one of those drugs you can just stop taking for a few days. You have to change the dose gradually. So I can't just come off it for a Christmas / New Year break.
All being well I will allow myself a trial glass of wine on Christmas Eve to see what happens. If that causes no ill effects then I have two more days to finish the bottle before my next batch of chemotherapy tablets. Because although as I said the warnings about alcohol don't apply to the temozolomide, I think that taking alcohol along with with temo, clomipramine, dexomethazone and all the other tablets would be a bit too much.
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