Showing posts with label Bad days. Show all posts
Showing posts with label Bad days. Show all posts
26 June Physio
A visit from my physio today. She said there is nothing she can give me that can help me to get on my feet again. So I'm looking to being bed bound (hoisted) for the rest of my life. Rather depressed about this.
17 Apr - Regrowth
A busy day- It seemed as if every occupational therap;ist in Cumbria was visiting our house bringing items of equipment to help mestand up,andturn around. Olga spotted ourGP walking up the drive. She brought new informationabout my recent or MRIscan which was not the same as we had been led to believe. I Mytumour has started regrowing from theoriginal site and is now bigger than it wasoriginally. We will have to wait fo rthe multidisciplinary team to come up with further treatment options
M eanwhile we must wait and see. we didn'tget much sleep last night.
M eanwhile we must wait and see. we didn'tget much sleep last night.
11 March - Going Weak at the knees
Olga took me for the usual short walk to the end of the cul desac for a breath of fresh airand to prove to myself Ican still walk.just as we got to theend of the road I felt my knees buckle under me. Olga's supporting arm and my stickstopped me falling to the ground. It looks as if it is time to consider a wheelchairor a mobility scooter. I was hoping it would not come to this as no oone that I know of who had the same type of tumour survivedfor long after going in a wheelchair.
It may not be apparent but Iam still having considerable difficulty using the computer. I have to correct nearly every characterI type. Nowadays Olga has to do my online jobs such as internet banking. Blogging and answering email arenn't important enough to get this special treatment I'm afraid.I've had to give uup my other blog.The same visual problems have put paid to the other activities I used to amuse myself with. It's just darned frustrating.All I am good for is watching TV and listening to the radio
It may not be apparent but Iam still having considerable difficulty using the computer. I have to correct nearly every characterI type. Nowadays Olga has to do my online jobs such as internet banking. Blogging and answering email arenn't important enough to get this special treatment I'm afraid.I've had to give uup my other blog.The same visual problems have put paid to the other activities I used to amuse myself with. It's just darned frustrating.All I am good for is watching TV and listening to the radio
25 November - Feeling depressed
I'm feeling a bit low at the moment. It isn't just the obvious - that I have an incurable brain tumour and all the implications of that. I think I've got used to that by now. It isn't just that I realize I'll never be considered well enough to get my drivers' licence back: I think I've got used to that now. But I seem to be getting to a stage like I was at a year ago when I was beset with a number of relatively minor ailments (relative to a brain tumour that is) so that life seems to be a succession of hospital visits and surgery appointments.
It isn't just the jumbled vision or my poor balance which makes me avoid walking as much as possible, so that my legs are starting to stiffen up through lack of use. It isn't just the sclerosis of the brain that makes me incapable now on concentrating on the kind of technical acrivities with which I used to amuse myself. Though I do feel frustrated about that.
My latest health issue is that I seem to have developed an abscess below one of my lower back teeth. Unfortunately the dental clinic Olga and I are both registered with is 25 miles away and inaccessible to us now that we no longer have the use of a car. At the moment I can't even walk as far as the nearest bus stop! So Olga spent the morning on the phone trying to find a dentist an affordable taxi ride from here.
At least she was successful and I have an appointment tomorrow.
Soon I have another hospital visit for an MRI scan of my abdomen to look at the poosible cyst on my kidney that they found while looking at my gall bladder. I haven't forgotten yet that a "possible cyst" on my brain is what turned out to be a brain tumour. So I do feel a bit anxious about that. A brain tumour on its own I can deal with but these other health issues are wearing my sense of optimism down a bit.
It isn't just the jumbled vision or my poor balance which makes me avoid walking as much as possible, so that my legs are starting to stiffen up through lack of use. It isn't just the sclerosis of the brain that makes me incapable now on concentrating on the kind of technical acrivities with which I used to amuse myself. Though I do feel frustrated about that.
My latest health issue is that I seem to have developed an abscess below one of my lower back teeth. Unfortunately the dental clinic Olga and I are both registered with is 25 miles away and inaccessible to us now that we no longer have the use of a car. At the moment I can't even walk as far as the nearest bus stop! So Olga spent the morning on the phone trying to find a dentist an affordable taxi ride from here.
At least she was successful and I have an appointment tomorrow.
Soon I have another hospital visit for an MRI scan of my abdomen to look at the poosible cyst on my kidney that they found while looking at my gall bladder. I haven't forgotten yet that a "possible cyst" on my brain is what turned out to be a brain tumour. So I do feel a bit anxious about that. A brain tumour on its own I can deal with but these other health issues are wearing my sense of optimism down a bit.
23 August - A question of balance
This problem I have with my balance seems to be getting worse and worse. Olga and I have arranged a trip away in London and it has got to the stage where I'm doubting my ability to go.I am aso expeiencing difficulty typing on the computer. Inless I cencentrate really hard, everything omes out as alphabet soup. This post willbe brief as a result.
I have become convinced that my tumour is regrowing.We phoned the hospital to see if we caqn get my next MRI scan expedited but were told that the only person who can make that happen is my GP, so off to the surgery we go.
The GP says that the symptoms I am experiencing could well be caused by my tumour. She prescribes some of my old friends - dexamethasone steroids - and some other tablets to increase blood supply to the brain. She promises to contact the hospital and try to get me an MRI scan as soon as possible. But it's a bank holiday weekend so it's anyone's guess how soon that will be. Meantime we return home and I have a sleepless night mulling over the implications of this new development.
I have become convinced that my tumour is regrowing.We phoned the hospital to see if we caqn get my next MRI scan expedited but were told that the only person who can make that happen is my GP, so off to the surgery we go.
The GP says that the symptoms I am experiencing could well be caused by my tumour. She prescribes some of my old friends - dexamethasone steroids - and some other tablets to increase blood supply to the brain. She promises to contact the hospital and try to get me an MRI scan as soon as possible. But it's a bank holiday weekend so it's anyone's guess how soon that will be. Meantime we return home and I have a sleepless night mulling over the implications of this new development.
16 July - Disheartening news
Went for my tri-monthly review with my consultant doctor today. After waiting more than an hour past our appointment time we were ushered in to see another doctor whom we had not seen before.
I didn't expect to learn anything new about my condition because I had not had any scans or tests since my previous visit. So we ran through the usual: any headaches, any seizures and so on.
I mentioned that I was applying to have my driving licence back and that they should have received a letter from the DVLA. He confirmed from my file that a letter had been received, but informed me that my consultant had not replied to it yet. That was the first bit of bad news. I have been waiting expectantly for the post every day hoping that it would bring news of my application. And based on how I feel, I was
beginning to expect the answer would be favourable.
But then the doctor dropped a bombshell. "Frankly" he said "I would not expect them to grant you your licence back because of the type of tumour you have got." I have got a Glioblastoma Multiforme Grade 4 (GBM4) which is incurable. Therefore, regardless of how well I feel now, I will never be rid of it and there is always the chance, the expectation even, that it will eventually grow back.
If I started having headaches or seizures then they would put me on steroids again. Any regrowth could be treated with surgery to remove it or chemotherapy to try and control it (though not more radiotherapy as I have already had the full dose.) So it would not be the end of the road as far as treatment is concerned. But no matter how long I survive it seems likely that I will never drive again
Of course, this is only one doctor's opinion. It is up to the DVLA's panel of doctors to decide. But I am trying to be a realist. If one medical specialist feels that way then it is likely that others will too. So I am feeling rather down at the moment. Being able to drive is an essential part of being able to live life as I want to live it. The only salvation would be for Olga to pass her test. No pressure, then.
I didn't expect to learn anything new about my condition because I had not had any scans or tests since my previous visit. So we ran through the usual: any headaches, any seizures and so on.
I mentioned that I was applying to have my driving licence back and that they should have received a letter from the DVLA. He confirmed from my file that a letter had been received, but informed me that my consultant had not replied to it yet. That was the first bit of bad news. I have been waiting expectantly for the post every day hoping that it would bring news of my application. And based on how I feel, I was
beginning to expect the answer would be favourable.
But then the doctor dropped a bombshell. "Frankly" he said "I would not expect them to grant you your licence back because of the type of tumour you have got." I have got a Glioblastoma Multiforme Grade 4 (GBM4) which is incurable. Therefore, regardless of how well I feel now, I will never be rid of it and there is always the chance, the expectation even, that it will eventually grow back.
If I started having headaches or seizures then they would put me on steroids again. Any regrowth could be treated with surgery to remove it or chemotherapy to try and control it (though not more radiotherapy as I have already had the full dose.) So it would not be the end of the road as far as treatment is concerned. But no matter how long I survive it seems likely that I will never drive again
Of course, this is only one doctor's opinion. It is up to the DVLA's panel of doctors to decide. But I am trying to be a realist. If one medical specialist feels that way then it is likely that others will too. So I am feeling rather down at the moment. Being able to drive is an essential part of being able to live life as I want to live it. The only salvation would be for Olga to pass her test. No pressure, then.
27 April - The doctor calls
Well that wasn't too successful. It seems that going from 1mg of dexamethasone (half a tablet) to nothing was too big a step for my body. I awoke with a mild headache and terrible balance problems. Olga took my blood pressure using our Omron blood pressure monitor and it was quite low, which is unusual for me.
Olga thought we should speak to a doctor but when we phoned the GP surgery we could not get an appointment until next Tuesday. We could go to the surgery at 5.30pm and wait to be seen as an emergency (!). Then I remembered the nurses at the radiotherapy and oncology department in Carlisle had given us a number we could call for advice if needed. Eventually we were phoned back by the consultant who advised us to increase the steroid dose to 0.5mg (a quarter of a tablet). But we were still advised to see a doctor.
About an hour later the phone rang. It was the GP surgery. Carlisle had been on the phone to them and a doctor was going to come out and visit us. Any of my readers familiar with the NHS will know that winning the lottery is easier than getting GPs to make house calls. The doctor's verdict was that the patient was OK but reducing the dosage of steroids can be tricky. We would carry on taking a quarter of a tablet a day and make an appointment at the surgery next week for a blood test.
Because the piece of dexamethasone tablet seemed so small I thought I could still give up the lansoprazole capsules which protect my stomach from the steroid. That was a mistake. I felt that quarter tablet on its entire journey through my system! So it looks like I'll have to carry on taking lansoprazole and dexamethasone for the time being.
Olga thought we should speak to a doctor but when we phoned the GP surgery we could not get an appointment until next Tuesday. We could go to the surgery at 5.30pm and wait to be seen as an emergency (!). Then I remembered the nurses at the radiotherapy and oncology department in Carlisle had given us a number we could call for advice if needed. Eventually we were phoned back by the consultant who advised us to increase the steroid dose to 0.5mg (a quarter of a tablet). But we were still advised to see a doctor.
About an hour later the phone rang. It was the GP surgery. Carlisle had been on the phone to them and a doctor was going to come out and visit us. Any of my readers familiar with the NHS will know that winning the lottery is easier than getting GPs to make house calls. The doctor's verdict was that the patient was OK but reducing the dosage of steroids can be tricky. We would carry on taking a quarter of a tablet a day and make an appointment at the surgery next week for a blood test.
Because the piece of dexamethasone tablet seemed so small I thought I could still give up the lansoprazole capsules which protect my stomach from the steroid. That was a mistake. I felt that quarter tablet on its entire journey through my system! So it looks like I'll have to carry on taking lansoprazole and dexamethasone for the time being.
20 January - A let down
Today we were supposed to go to Carlisle for an appointment with the consultant oncologist, also to have a blood count and pick up the temazolomide tablets for my fourth chemotherapy cycle due to start on Monday. We were also, of course, expecting to get the results of the MRI scan that I had a couple of weeks earlier. Although I don't think I have anything to worry about I was still a little bit anxious as some other brain tumour sufferers have learned what they didn't want to hear when the results came back.
Olga phoned the hospital yesterday to confirm that transport had been arranged and was told we should expect a car from 12:30 for our 14:15 appointment. 12:30 came and went. As did 13:30, the point at which making the appointment on time by any means was no longer possible. It's doubtful we could even have arranged a taxi at such short notice because at that time of day the local taxi firms are on pre-booked school runs.
Olga spoke to the consultant's secretary who checked and told us that the transport had not been booked. This despite the transport box on my appointment card being ticked. Clearly the administrative clerk failed to tick the box on the sheet from which the transport arrangements are made up and the person Olga spoke to yesterday didn't even bother to check. Olga was asked to check in future that the request for transport was recorded. So as well as going for treatment we are apparently supposed to supervise the NHS admin staff.
This is the first time we have been let down by the hospital transport service and to be clear it is not the fault of the volunteer drivers, who often complain about being sent to pick up people whose clinics have been cancelled and other administrative failures. It is frustrating when you live in a place with next to no public transport having to depend on other people to get to and from hospital appointments and always being on tenterhooks over whether the car will come or not.
So now I have to wait until Monday morning, the time of my new appointment, to learn the result of my MRI scan, and I will start the new chemo cycle a day late. No big deal, but a lot of frayed nerves and half a day spent for no useful purpose.
Olga phoned the hospital yesterday to confirm that transport had been arranged and was told we should expect a car from 12:30 for our 14:15 appointment. 12:30 came and went. As did 13:30, the point at which making the appointment on time by any means was no longer possible. It's doubtful we could even have arranged a taxi at such short notice because at that time of day the local taxi firms are on pre-booked school runs.
Olga spoke to the consultant's secretary who checked and told us that the transport had not been booked. This despite the transport box on my appointment card being ticked. Clearly the administrative clerk failed to tick the box on the sheet from which the transport arrangements are made up and the person Olga spoke to yesterday didn't even bother to check. Olga was asked to check in future that the request for transport was recorded. So as well as going for treatment we are apparently supposed to supervise the NHS admin staff.
This is the first time we have been let down by the hospital transport service and to be clear it is not the fault of the volunteer drivers, who often complain about being sent to pick up people whose clinics have been cancelled and other administrative failures. It is frustrating when you live in a place with next to no public transport having to depend on other people to get to and from hospital appointments and always being on tenterhooks over whether the car will come or not.
So now I have to wait until Monday morning, the time of my new appointment, to learn the result of my MRI scan, and I will start the new chemo cycle a day late. No big deal, but a lot of frayed nerves and half a day spent for no useful purpose.
22 November - Vertigo
I'm nearly at the end of the first chemotherapy cycle. It has been about 3 weeks since I had temozolomide. The unpleasant taste and chalky mouth have almost gone. The hand tremor and feeling dizzy and light headed remain, though. My hands shake enough to make using tools almost impossible but not so much that I can't lift a mug of tea without spilling it. The tablets prescribed by the GP to stop the shaking made no difference whatsoever.
This afternoon I walked into town with Olga and we went into a showroom to look at something. The showroom had some short but steep stairs between levels and no hand rail. Olga had gone on ahead. I just had the walking stick. I went up one stair and felt vertigo, like I was losing my balance. I really thought I might fall down. I called Olga and she took my free hand and we negotiated the stairs.
After that I made sure that I always had three points of contact when negotiating stairs. My knees were shaking like crazy. I was also soaked in sweat by the time we left. I've always been rather sweaty but now I need a shower and a change of clothing after any trip out, which is a bit of an inconvenience.
Looks like it might be a while before I'm able to tackle any Wainwright summits. :( But I am very glad that I have such a devoted wife in Olga who doesn't complain about having to be a wet nurse for her increasingly useless husband!
On Friday afternoon we have an appointment with the consultant in Carlisle and a blood test to see whether I am OK to start the second chemo cycle - an even bigger dose of temozolomide. So I have that to look forward to!
This afternoon I walked into town with Olga and we went into a showroom to look at something. The showroom had some short but steep stairs between levels and no hand rail. Olga had gone on ahead. I just had the walking stick. I went up one stair and felt vertigo, like I was losing my balance. I really thought I might fall down. I called Olga and she took my free hand and we negotiated the stairs.
After that I made sure that I always had three points of contact when negotiating stairs. My knees were shaking like crazy. I was also soaked in sweat by the time we left. I've always been rather sweaty but now I need a shower and a change of clothing after any trip out, which is a bit of an inconvenience.
Looks like it might be a while before I'm able to tackle any Wainwright summits. :( But I am very glad that I have such a devoted wife in Olga who doesn't complain about having to be a wet nurse for her increasingly useless husband!
On Friday afternoon we have an appointment with the consultant in Carlisle and a blood test to see whether I am OK to start the second chemo cycle - an even bigger dose of temozolomide. So I have that to look forward to!
9 November - Vision and balance problems
Nothing new to report. Physically I'm in pretty good shape - my appetite is good and I can walk reasonable distances.
But I can only go out of the house if escorted by Olga holding my hand - not just metaphorically but literally. I continue to have problems with vision and difficulties with balance if I have to change direction to avoid other people. Without Olga's attention I would probably fall over or walk under the wheels of a car while trying to cross the road. I'm least conscious of these issues when I'm sitting down, at home. It has made me reluctant to go for walks which I really need.
I'm fed up with the feeling that this is all just a bad dream.
But I can only go out of the house if escorted by Olga holding my hand - not just metaphorically but literally. I continue to have problems with vision and difficulties with balance if I have to change direction to avoid other people. Without Olga's attention I would probably fall over or walk under the wheels of a car while trying to cross the road. I'm least conscious of these issues when I'm sitting down, at home. It has made me reluctant to go for walks which I really need.
I'm fed up with the feeling that this is all just a bad dream.
26 October - Starting intensive chemotherapy
My blood test results have given the all clear to begin the first of six intensive chemotherapy cycles tomorrow. Just when I'm starting to lose the foul taste in my mouth and able to enjoy food again! I just have to keep telling myself it's for the better.
At least, I hope it is. There has been no improvement in my hand tremor. But the only major effect of that is that electronic constructional work and other activities which require the use of tools and a steady hand is next to impossible. Oh, and I tend to hit the wrong keys on the computer keyboard more often than previously. This I could (reluctantly) put up with.
But the most debilitating symptom is the fuzziness in my head, the feeling I'm not really there, that I'm looking at the world through a window that makes everything look a bit out of focus, that it's unreal, just a bad dream. It's similar to how I was feeling before I was even diagnosed with a brain tumour. Only worse. I have started to worry that despite the treatment I have had so far the tumour is fighting back, that this is as good as it's going to get. Morale is at a low point at the moment.
At least, I hope it is. There has been no improvement in my hand tremor. But the only major effect of that is that electronic constructional work and other activities which require the use of tools and a steady hand is next to impossible. Oh, and I tend to hit the wrong keys on the computer keyboard more often than previously. This I could (reluctantly) put up with.
But the most debilitating symptom is the fuzziness in my head, the feeling I'm not really there, that I'm looking at the world through a window that makes everything look a bit out of focus, that it's unreal, just a bad dream. It's similar to how I was feeling before I was even diagnosed with a brain tumour. Only worse. I have started to worry that despite the treatment I have had so far the tumour is fighting back, that this is as good as it's going to get. Morale is at a low point at the moment.
16 October - Frustration
Olga and I went for a walk this afternoon to Brigham and back. It is probably the furthest I have walked since I was in hospital. It was also very nearly our last walk, ever. As we approached the T junction with the A66 we had to jump for our lives as a white van turning in to the lane almost ran on to the verge due to the driver steering with his left hand and talking into a mobile phone with the other. It was a near miss and we were both quite shaken.
Olga had a bit of a job persuading me to go for this walk because I couldn't be bothered. To be honest I've been a bit depressed the last few days. I think the main reason is the lack of improvement in the state of my head. I've described it before as feeling a bit dizzy, like I've had too much to drink. But it's a bit stranger than that. Everything seems a bit fuzzy and unreal, like I'm viewing the world through a glass window. I'm not as conscious of this feeling of unreality if I sit at home and read or listen to music or watch TV or just doze, so that's what I'm inclined to do.
The choices of where to walk starting from here are a bit limited. I'm getting fed up with walking round the block. It's so frustrating not having a car because there are so many places to go and things we could do if we could just drive a few miles before setting off. If we have to run the gauntlet of drunk drivers using mobile phones for daring to venture along some of the country lanes on foot then perhaps staying at home is the best idea after all.
Olga had a bit of a job persuading me to go for this walk because I couldn't be bothered. To be honest I've been a bit depressed the last few days. I think the main reason is the lack of improvement in the state of my head. I've described it before as feeling a bit dizzy, like I've had too much to drink. But it's a bit stranger than that. Everything seems a bit fuzzy and unreal, like I'm viewing the world through a glass window. I'm not as conscious of this feeling of unreality if I sit at home and read or listen to music or watch TV or just doze, so that's what I'm inclined to do.
The choices of where to walk starting from here are a bit limited. I'm getting fed up with walking round the block. It's so frustrating not having a car because there are so many places to go and things we could do if we could just drive a few miles before setting off. If we have to run the gauntlet of drunk drivers using mobile phones for daring to venture along some of the country lanes on foot then perhaps staying at home is the best idea after all.
29 August - Tired and lethargic
This weekend has been pretty grim. I feel so tired and lethargic I can't take an interest in anything. Just slumped in a chair dozing most of the time. Forced myself to take a bit of exercise as I know it will do me good, but it is an effort of will, not like a week ago when I felt I could almost climb a mountain. Even my appetite is not what it was, not helped by my mouth feeling like it is coated in some foul-tasting powder.
I guess this is just the effect of all the treatment, so I suppose this is how it is going to be for the next few weeks. Hopefully it gets better after that.
I guess this is just the effect of all the treatment, so I suppose this is how it is going to be for the next few weeks. Hopefully it gets better after that.
26 August - Clomipramine side effects?
I hope our happiness at getting the clomipramine will not turn out to be short-lived.
I slept reasonably well but had a bit of a headache in the middle of the night. Took paracetamol. Early in the morning around 5.30-6am I awoke with my mucles feeling a bit tense, especially across my stomach, and feeling slightly sick. After a while I got up, or rather sat up, and felt very woozy indeed. I was lolling around like a very drunk person. After a while the feeling passed. I lay down and rested with some deep breathing until I heard Olga getting up. She checked my blood pressure with the machine we have got and said it was normal but a bit lower than usual for me.
I didn't have much appetite for breakfast this morning but began to feel better after tea, coffee and porridge. Right now (9am) I'm feeling pretty much back to how I have been feeling on other mornings. But at the time it was not a pleasant experience.
We don't know if it was the clomipramine that caused this - after all, I had only taken one tablet before going to bed the night before - but it will be easy enough to check. If you Google "clomipramine blood pressure" you will find that clomipramine can cause low blood pressure and some people may be hypersensitive to it and experience low blood pressure shortly after taking it. I don't know if I am one of those people, but one time a few years ago about half an hour after my GP gave me an injection for something else, I blacked out in a concert in Cockermouth and ended up in Whitehaven hospital after a fast ride in an ambulance. No-one found an explanation for why it happened. So perhaps I am hypersensitive to certain drugs.
It would be rather a blow if, having suffered almost none of the side effects of the treatment I have been receiving so far, I am unable to take this Clomipramine on which we had pinned our hopes. We will just have to wait and then try it again in a couple of days to see if what I felt this morning was just coincidence, a one-off.
Watch this space.
I slept reasonably well but had a bit of a headache in the middle of the night. Took paracetamol. Early in the morning around 5.30-6am I awoke with my mucles feeling a bit tense, especially across my stomach, and feeling slightly sick. After a while I got up, or rather sat up, and felt very woozy indeed. I was lolling around like a very drunk person. After a while the feeling passed. I lay down and rested with some deep breathing until I heard Olga getting up. She checked my blood pressure with the machine we have got and said it was normal but a bit lower than usual for me.
I didn't have much appetite for breakfast this morning but began to feel better after tea, coffee and porridge. Right now (9am) I'm feeling pretty much back to how I have been feeling on other mornings. But at the time it was not a pleasant experience.
We don't know if it was the clomipramine that caused this - after all, I had only taken one tablet before going to bed the night before - but it will be easy enough to check. If you Google "clomipramine blood pressure" you will find that clomipramine can cause low blood pressure and some people may be hypersensitive to it and experience low blood pressure shortly after taking it. I don't know if I am one of those people, but one time a few years ago about half an hour after my GP gave me an injection for something else, I blacked out in a concert in Cockermouth and ended up in Whitehaven hospital after a fast ride in an ambulance. No-one found an explanation for why it happened. So perhaps I am hypersensitive to certain drugs.
It would be rather a blow if, having suffered almost none of the side effects of the treatment I have been receiving so far, I am unable to take this Clomipramine on which we had pinned our hopes. We will just have to wait and then try it again in a couple of days to see if what I felt this morning was just coincidence, a one-off.
Watch this space.
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