One of my followers sent me a link to an article on the BBC website about a new treatment for glioblastoma brain tumours.
It's at the clinical trial stage at the moment so it is unlikely that I could get this treatment right now. The thing with clinical trials is that to be accepted you usually have to meet a very specific set of criteria. I've probably disqualified myself by using clomipramine as an anti-cancer treatment. It also helps to live near the place where they are conducting the trials. The other thing - as the article points out - is that half the people on the trial will only receive a placebo. Personally I'd rather receive treatment than take part in a lottery.
But it is an interesting story and certainly something to talk to my oncologist about at my next consultation.
Showing posts with label Treatment. Show all posts
Showing posts with label Treatment. Show all posts
3 December - another physio visit
On Tuesday we were visited by Debbie's physiotherapist colleague, the sporty-looking Jo. I get teased a bit by Olga about having all these fit young women coming to visit me, but I'd really rather not require their attention at all.
Jo prescribed some more exercises which were deceptively easy, but must be achieving something as I'm aching in a few places I wasn't before.
The execises have to be repeated ten times. So what's the problem, you may ask? Can I count up to ten? Can I hell! What have they done to my brain, Ma? I now have the attention span of a gnat and no matter how hard I try to concentrate I find that I get about as far as 3 and have lost count and my mind has wandered on to something else. Because of this sclerosis of the brain I am avoiding technical activities or anything involving the computer. These days I mostly sit listening to music radio for hours on end - something that requires no intellectual effort at all, but which doesn't require any physical activity either.
Jo is coming back next Tuesday to observe how my walking is. She reckons she can improve my balance by setting some exercises that will 'challenge' it. We'll see how that goes.
Meanwhile we're both waiting anxiously for the results of the MRI scan.
Jo prescribed some more exercises which were deceptively easy, but must be achieving something as I'm aching in a few places I wasn't before.
The execises have to be repeated ten times. So what's the problem, you may ask? Can I count up to ten? Can I hell! What have they done to my brain, Ma? I now have the attention span of a gnat and no matter how hard I try to concentrate I find that I get about as far as 3 and have lost count and my mind has wandered on to something else. Because of this sclerosis of the brain I am avoiding technical activities or anything involving the computer. These days I mostly sit listening to music radio for hours on end - something that requires no intellectual effort at all, but which doesn't require any physical activity either.
Jo is coming back next Tuesday to observe how my walking is. She reckons she can improve my balance by setting some exercises that will 'challenge' it. We'll see how that goes.
Meanwhile we're both waiting anxiously for the results of the MRI scan.
2 December - MRI scan
To Cumberland Infirmary this morning for an MRI scan of my head. According to the radiographer the results will be sent to the doctors who requested the scan in a week or two. So we're faced with a bit of an anxious wait. We actually already have an appointment a couple of days before Christmas. I'd prefer not to wait that long but we're in their hands to a great extent.
13 November - A physiotherapist calls
The physiotherapist visited this afternoon: a nice young lady called Debbie. After assessing me she has left us with a couple of easy exercises which she hopes will improve my balance - and my walking. Because of my vision problem I am instinctively wlking with a stoop in order to see where my feet are going. This very quickly results in back pain. So I hope this can be cured. It would ber nice to get my vision back yo mormal too, though I am not optimistic. Typing requires extra care to avoid mistakes, which is annoying.
One of Debbie's colleagues will visit us at home because of my difficulty accessing public transport. I can't help heep on being impressed at the service provided by our National Health Service.
One of Debbie's colleagues will visit us at home because of my difficulty accessing public transport. I can't help heep on being impressed at the service provided by our National Health Service.
7 November - A referral
Received a letter today informing me that I have been referred to a neurological physiotherapist for assessment. I have no idea what a neurological physiotherapist does or why I might need one. Google suggests it is something a stroke victim might need to regain the use of some function. Arms and legs all working here. I wish my brain was, but you can't have everything.
No doubt all will become clear once I get to meet them.
No doubt all will become clear once I get to meet them.
17 October - A question of balance
It's good to be home. I must go on record to say how pleased I was the treatment I received at the Royal Victoria Infirmary in Newcastle. I could not have been looked after better.Our British National Health Service is the best healthcare system in the world. I wish that some of my American friends who are so strongly opposed to the idea of having a similar system over there could experience it (without having a brain tumour, obviously. :)
My operation was successful. The doctors told me they operated using a microscope and removed all of the brain tumour that they could see. I don't think that means I no longer have the tumour.There is still a part of it inside my brain which could grow back eventually. But hopefully this will give me a few more years when I will be able to enjoy a normal life.
One thing that puzzles me is why I don't feel better than I do at the moment. My sense of balance is worse than it was before the operation. I have to be very careful not to lose my balance when I move about the house. My vision is not as sharp as it was either,. I am using the computer quite well at the moment which is an improvement but typing is still a bit more error-prone than it was..
I remember after the first operation it took several weeks for my vision to stabilize. So I guess I may just have to be patient. I have another appointment with the doctors next week so we'll see then what they have to say about it.
My operation was successful. The doctors told me they operated using a microscope and removed all of the brain tumour that they could see. I don't think that means I no longer have the tumour.There is still a part of it inside my brain which could grow back eventually. But hopefully this will give me a few more years when I will be able to enjoy a normal life.
One thing that puzzles me is why I don't feel better than I do at the moment. My sense of balance is worse than it was before the operation. I have to be very careful not to lose my balance when I move about the house. My vision is not as sharp as it was either,. I am using the computer quite well at the moment which is an improvement but typing is still a bit more error-prone than it was..
I remember after the first operation it took several weeks for my vision to stabilize. So I guess I may just have to be patient. I have another appointment with the doctors next week so we'll see then what they have to say about it.
3 October - Surgery again
Just a quick update on what is going to happen. The team at Newcastle have decided that the best course of action for me is more brain surgery to remove as much as possible of the tumour. We did raise the issue of other kinds of treatment but it turns out that they would not be appropriate for the type of tumour I have. ("Cyber knife" was mentioned but is not possible because my tumour doesn't have clearly defined boundaries.)
So the plan - as always subject to change subject to bed and theatre availability - is for me to go over next Tuesday (8th October) to the Royal Victoria Infirmary in Newcastle (where I had brain surgery before). Hopefully I will be on the surgeon's list for Wednesday 9th.
I can't say that I am looking forward to it but there don't seem to be many other choices. The first time, when the tumour was first spotted, everything happened so quickly that I didn't have time to think about it much. I just have to hope that it all goes as well as it did the first time and I'll be back recovering from the op by next weekend.
Wish me luck!
2 October - A doctor calls
Had a phone call from a doctor this afternoon. My case has been discussed at the multi disciplinary meeting. The cancer has grown: it is now 3 cm. It seems they are going to do something about it. A doctor from the Newcastle hospital will phone tomorrow with more details of the treatment options. Olga thought he mentioned the possibility of going in to hospital next week. So we are now waiting anxiously for the phone to ring.
10 May - Good news
Another appointment with the oncologist at Carlisle Infirmary to check on my progress and find out the results of my last MRI scan. The good news is that the tumour hasn't grown. The bad news is that it hasn't shrunk, either. The scan showed no change over the one made on 5 January. I had really been hoping for something a bit more positive to show for the weeks of tiredness caused by the chemotherapy, something extra to show some gain from our decision to take clomipramine in addition to the "standard" treatment. So to tell the truth I was a little disappointed. It seems the surgery and radiotherapy did most of the work in reducing the tumour from the size it was originally.
My next appointment with the consultant will be in three months' time but I won't have another MRI scan for six months unless I experience brain tumour symptoms in the meantime. We were a bit disappointed about that, too, as it smacks of a decision made on budgetary rather than clinical grounds. I've read quite a lot about these glioblastoma multiforme tumours. They can lie dormant for weeks, months or even years and then suddenly begin growing aggressively. I'd rather someone kept an eye on it a bit more frequently. I don't know if it is possible to find somewhere I could have an MRI scan privately. Olga finds our NHS rather "hands-off" compared to hospitals in the former Soviet Union.
The consultant, Olga and I discussed the issues I have had since the completion of treatment and I came away with some diuretic tablets to stop the water retention that may be accounting for a lot of my recent weight gain. Most people put on weight when they start taking the steroids; perversely I have really only started piling on the pounds after we began reducing the dosage.
We are also going to make another attempt to stop the steroids entirely: So far we have got down to 0.5mg or a quarter of a tablet which is about the size of a breadcrumb, but the last time we tried to stop completely I got a mild headache. Let's hope this time we are more successful.
My next appointment with the consultant will be in three months' time but I won't have another MRI scan for six months unless I experience brain tumour symptoms in the meantime. We were a bit disappointed about that, too, as it smacks of a decision made on budgetary rather than clinical grounds. I've read quite a lot about these glioblastoma multiforme tumours. They can lie dormant for weeks, months or even years and then suddenly begin growing aggressively. I'd rather someone kept an eye on it a bit more frequently. I don't know if it is possible to find somewhere I could have an MRI scan privately. Olga finds our NHS rather "hands-off" compared to hospitals in the former Soviet Union.
The consultant, Olga and I discussed the issues I have had since the completion of treatment and I came away with some diuretic tablets to stop the water retention that may be accounting for a lot of my recent weight gain. Most people put on weight when they start taking the steroids; perversely I have really only started piling on the pounds after we began reducing the dosage.
We are also going to make another attempt to stop the steroids entirely: So far we have got down to 0.5mg or a quarter of a tablet which is about the size of a breadcrumb, but the last time we tried to stop completely I got a mild headache. Let's hope this time we are more successful.
3 April - Weight gain
Had a shock when I stood on the bathroom scales this morning. My weight was more than 96 kilos! That's the heaviest I've even been. No wonder walking seems such an effort these days.
Before I started the cancer treatment my weight was around 88 kilos. Even that was a couple of kilos more than I'd really like it to be. But it has slowly increased over the ensuing months. "It's the steroids" says everyone, offering the hope that my weight (and other treatment side effects) will eventually get back to normal once the treatment is over. My oncologist has already said that we can start reducing the dose and eventually stop the dexamethazone. I'm half way there but success depends on not experiencing any headaches or other symptoms - if I do then I have to go back to 4mg a day.
I became concerned about my weight after looking at my feet and noticing that they were puffy and my ankles were swollen. Olga examined them and concluded that it is water retention. I did some Googling and "swollen ankles after chemotherapy" appeared to be a not uncommon search term. The consensus seemed to be that it is not something to worry too much about and that it will eventually clear up of its own accord. But one woman's oncologist had prescribed a diuretic. I wasn't keen on another trip to the doctor's surgery nor on taking yet another tablet so we have decided to try spilanthes - a herbal remedy that has diuretic properties which Olga already has in her medicine cabinet. We'll see how that goes.
Before I started the cancer treatment my weight was around 88 kilos. Even that was a couple of kilos more than I'd really like it to be. But it has slowly increased over the ensuing months. "It's the steroids" says everyone, offering the hope that my weight (and other treatment side effects) will eventually get back to normal once the treatment is over. My oncologist has already said that we can start reducing the dose and eventually stop the dexamethazone. I'm half way there but success depends on not experiencing any headaches or other symptoms - if I do then I have to go back to 4mg a day.
I became concerned about my weight after looking at my feet and noticing that they were puffy and my ankles were swollen. Olga examined them and concluded that it is water retention. I did some Googling and "swollen ankles after chemotherapy" appeared to be a not uncommon search term. The consensus seemed to be that it is not something to worry too much about and that it will eventually clear up of its own accord. But one woman's oncologist had prescribed a diuretic. I wasn't keen on another trip to the doctor's surgery nor on taking yet another tablet so we have decided to try spilanthes - a herbal remedy that has diuretic properties which Olga already has in her medicine cabinet. We'll see how that goes.
23 March - Hospital appointment
Afternoon appointment with the oncologist in Carlisle. Nothing new to report. No new symptoms means everything is going OK. Had a blood test and collected the prescription for the sixth and final chemotherapy cycle which I start on Saturday.
Next appointment with the doc will be in two months time, before which I should have received an appointment for an MRI scan. Then the doctors will be able to actually see how well the treatment has gone.
Olga asked if I was to continue taking the steroids (dexamethazone) after the chemo was finished. So the doctor has given me a programme to step down the steroids from the current 4mg a day to zero over the next 4 weeks. If I don't feel ill or have headaches then I could be free of medication by this time next month, but if any symptoms appear I will go back to 4mg. So fingers crossed...
Next appointment with the doc will be in two months time, before which I should have received an appointment for an MRI scan. Then the doctors will be able to actually see how well the treatment has gone.
Olga asked if I was to continue taking the steroids (dexamethazone) after the chemo was finished. So the doctor has given me a programme to step down the steroids from the current 4mg a day to zero over the next 4 weeks. If I don't feel ill or have headaches then I could be free of medication by this time next month, but if any symptoms appear I will go back to 4mg. So fingers crossed...
3 March - Novocure
One of my readers wrote to me last night to say "do a web search on novocure." I did. It appears to be a new cancer treatment currently undergoing clinical trials in the USA and Europe which is relevant to the treatment of brain tumours as well as other types of cancer.
There are no clinical trials of novocure currently taking place in the UK, however. Furthermore it appears I would fail the inclusion criteria shown on the website. My glioblastoma is neither newly diagnosed nor recurrent and has received other treatment (intensive temozolomide and clomipramine) since diagnosis.
To be honest I would not sign up for a clinical trial even if I did qualify. I have accepted my situation, whatever that turns out to be. At the same time I don't think my life expectancy will be as short as the prognosis I was given last summer. I believe we are beating the bugger at the moment.
I hate being in hospital. I would rather receive the treatment I am currently getting as an outpatient and see out my days in the comfort of my own home than spend much of the time left to me travelling to and from distant hospitals or having to undergo further operations (as I believe would be necessary for novocure which must be physically delivered to the tumour.) I am also given to believe that participants in clinical trials may receive a placebo instead of the drug. I'd rather know that I am receiving treatment.
But it's good to know what options are available. I'm writing this blog not just for myself but for others who learn that they or a friend or relative has a brain tumour and I appreciate all relevant comments.
There are no clinical trials of novocure currently taking place in the UK, however. Furthermore it appears I would fail the inclusion criteria shown on the website. My glioblastoma is neither newly diagnosed nor recurrent and has received other treatment (intensive temozolomide and clomipramine) since diagnosis.
To be honest I would not sign up for a clinical trial even if I did qualify. I have accepted my situation, whatever that turns out to be. At the same time I don't think my life expectancy will be as short as the prognosis I was given last summer. I believe we are beating the bugger at the moment.
I hate being in hospital. I would rather receive the treatment I am currently getting as an outpatient and see out my days in the comfort of my own home than spend much of the time left to me travelling to and from distant hospitals or having to undergo further operations (as I believe would be necessary for novocure which must be physically delivered to the tumour.) I am also given to believe that participants in clinical trials may receive a placebo instead of the drug. I'd rather know that I am receiving treatment.
But it's good to know what options are available. I'm writing this blog not just for myself but for others who learn that they or a friend or relative has a brain tumour and I appreciate all relevant comments.
5 January - MRI scan
I've had my MRI scan. Nothing very interesting to say about it. I just had to lie still on a table while the radiographers operated the machine.
I don't expect to be told the results until my next appointment with the oncologist in two weeks' time. In fact, if they contact us early we'll only worry that the scan revealed something that needed more immediate action. So there should be nothing to report for a couple of weeks. No news is good news.
I don't expect to be told the results until my next appointment with the oncologist in two weeks' time. In fact, if they contact us early we'll only worry that the scan revealed something that needed more immediate action. So there should be nothing to report for a couple of weeks. No news is good news.
1 January 2012 - Appointment for a scan
I wonder what the New Year will bring?
One surprise, after our recent consultation with the oncologist, was an appointment for an MRI scan of my head, in Carlisle Infirmary next Thursday. At 08:30am! Not quite sure how we are going to get there at that time in the morning, but hopefully the hospital volunteer car service will be able to provide a car for us.
So soon we may know by other means than how I feel, how my treatment is going.
One surprise, after our recent consultation with the oncologist, was an appointment for an MRI scan of my head, in Carlisle Infirmary next Thursday. At 08:30am! Not quite sure how we are going to get there at that time in the morning, but hopefully the hospital volunteer car service will be able to provide a car for us.
So soon we may know by other means than how I feel, how my treatment is going.
29 December - Cheering news
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!
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!"
26 November - Feeling depressed
I hope that clomipramine is more effective against cancer than it is as an antidepressant. Because I have been on the full 150mg dose for several weeks now and yet I'm feeling quite depressed. The dizziness / balance issue I have complained of doesn't help my mood as it thwarts any attempt to try to lead a normal life. Neither does it help that I decided to see if I could sell our website business in order to devote my time and strength to fighting the cancer and enjoying what's left of my life. As tasks go it is right down there with selling one of your children into slavery and planning your own funeral. Perhaps it would be better just to let the business die a natural death.
On Friday afternoon we had two appointments at the Radiotherapy Department in Carlisle, first to be given a blood test and then to see the consultant. Originally the appointments had been on separate days but the hospital phoned to rearrange it so we only had to make one round trip. My blood counts were fine, so there was no impediment to starting the second cycle of heavy chemotherapy. However the radiotherapy should not be causing any side effects this long after it finished. It might be the clomipramine instead. So I am to have a new MRI scan to see what might be going on.
Unfortunately the plan to start the second cycle of chemo this weekend failed because when Olga went to the hospital pharmacy to get the medication they did not have sufficient temozolomide tablets. Apparently I am the only person in North Cumbria to be receiving this particular medication. You would think that with all the managers employed in the NHS someone would have devised a system that ensured the hospital pharmacy had stock of the drugs needed by current patients. Obviously not.
We have just had a phone call to say that the hospital will send us the remaining tablets by taxi on Tuesday afternoon. With the ones that we have we can start the cycle tomorrow (Sunday.) This delay will at least mean that I won't be starting cycle 3 on Christmas Day.
On Friday afternoon we had two appointments at the Radiotherapy Department in Carlisle, first to be given a blood test and then to see the consultant. Originally the appointments had been on separate days but the hospital phoned to rearrange it so we only had to make one round trip. My blood counts were fine, so there was no impediment to starting the second cycle of heavy chemotherapy. However the radiotherapy should not be causing any side effects this long after it finished. It might be the clomipramine instead. So I am to have a new MRI scan to see what might be going on.
Unfortunately the plan to start the second cycle of chemo this weekend failed because when Olga went to the hospital pharmacy to get the medication they did not have sufficient temozolomide tablets. Apparently I am the only person in North Cumbria to be receiving this particular medication. You would think that with all the managers employed in the NHS someone would have devised a system that ensured the hospital pharmacy had stock of the drugs needed by current patients. Obviously not.
We have just had a phone call to say that the hospital will send us the remaining tablets by taxi on Tuesday afternoon. With the ones that we have we can start the cycle tomorrow (Sunday.) This delay will at least mean that I won't be starting cycle 3 on Christmas Day.
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