On Sunday I completed a five mile walk that included one of Lakeland's lesser summits. I think I probably overdid it a bit. We did complete the last section up hill from Cockermouth town centre to home in a taxi. But despite that I am pleased with what I accomplished,
Before setting off I was anything but sure I would get all the way to the summit which is 254m high. I was surprised how well my legs felt. I certainly walked a lot slower than I used to do but I didn't find the ascent at all taxing. It was only on the final couple of hundred metres that I began to tire. The sight of the summit spurred me on until we reached it.
I should have been overjoyed at having accomplished this, my first fell walk since discovering that I had a brain tumour. But my happiness was marred by the discovery that one problem that has occurred since my treatment does not appear to be going away. My sense of balance is hopeless.
I am like a toddler who has just learned to walk but hasn't completely mastered it. Except I am rather a large toddler. Although I manage to avoid falling over with the help of my walking stick I panic when I have to negotiate uneven ground, and usually need Olga's hand for additional support. Two walking sticks might help, though I have always preferred to keep one hand free and regard an additional stick as an encumbrance.
I think I have heard others who have had brain surgery and radiotherapy mention balance problems. It may be an effect of the radiotherapy as I don't recall having a balance problem in my first weeks of recovery. I have mentioned it to my oncologist and he asks me about it but doesn't pass any further comment. I am afraid that some part of my brain has been irreparably damaged and that no matter how well my fitness may improve I will never be rid of this problem.
Showing posts with label Good days. Show all posts
Showing posts with label Good days. Show all posts
14 May - My 60th Birthday
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| Olga and I on my 60th birthday |
14 May - My 59th birthday
My main ambition now is to get back some fitness. If I can get rid of my problems with balance and the weakness in my legs then I will be half way to feeling normal. Though I can't entirely get out of my mind the knowledge of having a ticking time bomb in my head that could go off at any moment. I really wish I could have my head scanned more often than six-monthly.
But enough of that. For now I'll celebrate the fact that I've survived for 10 months and the tumour doesn't appear to be growing. (touch wood.) Life isn't bad, even with a brain tumour.
22 March - An afternoon by the lake
An absolutely glorious Spring day. One of our neighbours who had a job to do near Crummock Water offered to take us for an afternoon out. We went to Lanthwaite Green and Olga and I strolled slowly along the level paths at the head of the lake for a couple of hours. It was the longest distance I have walked for a few months.
It was wonderful to be out in the beautiful Lake District on such a perfect day, but I did get a lump in my throat when I looked at the surrounding hills and remembered the summits - all of which I have visited at one time or another - and wondered if I would ever get up there again. Even a modest slope on uneven ground presented a bit of a challenge due to the wobbly legs and vertigo. What seems easy whilst sitting comfortably is a different matter in practice.
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| JM at the head of Crummock Water |
23 February - Fifth chemotherapy cycle
Just back from a hospital appointment in Carlisle to see the doctor prior to commencing my fifth cycle of chemotherapy.
My blood count was "great" and my scan results were "favourable". Such side effects as I have experienced, like feeling tired and weak in my legs, are "normal". Some side effects may disappear once the chemotherapy is over, but those caused by the radiotherapy are more long term, unfortunately.
The doctor seemed pleased with my progress - always a good sign, I think. Without wishing to tempt fate it would appear that so far, at least, I am "beating the bugger." Or rather, we are beating the bugger, because I'm sure that Olga's devoted care and ensuring I eat a healthy diet with lots of fruit and vegetables is helping me fight the cancer. We're in this together.
My blood count was "great" and my scan results were "favourable". Such side effects as I have experienced, like feeling tired and weak in my legs, are "normal". Some side effects may disappear once the chemotherapy is over, but those caused by the radiotherapy are more long term, unfortunately.
The doctor seemed pleased with my progress - always a good sign, I think. Without wishing to tempt fate it would appear that so far, at least, I am "beating the bugger." Or rather, we are beating the bugger, because I'm sure that Olga's devoted care and ensuring I eat a healthy diet with lots of fruit and vegetables is helping me fight the cancer. We're in this together.
23 January - Significant improvement
"Significant improvement." That's what the doctor said my MRI scan results showed, during my re-scheduled appointment this morning. Good news for sure, yet I'm feeling vaguely short-changed that something which was such a big deal for me resulted in just a two-word answer which I wouldn't have received at all if I had not asked about the scan specifically. The entire consultation lasted less than five minutes.
I did learn that the bad constipation I have experienced when taking the heavy dose of temozolomide is caused by the anti-sickness tablets I take to avoid heaving them up again. The doctor suggested I take just one tablet instead of two a day. So far I have never felt like being sick at all and during the radiotherapy when I was taking a lesser dose of temozolomide I stopped taking the anti-sickness pills altogether. So this looks like something I can try.
It seems the public service cuts are beginning to bite. North Cumbria NHS Trust has one of the biggest deficits in the country I believe, and the effects are being felt by the drivers in the ambulance and transport service for whom all overtime has stopped. Patients now must book their own transport but have to provide increasing justification that they need it. I think that now my outpatient visits are down to once every 4 weeks we will have to take up some of the offers of lifts we have received, or consider getting the 600 bus which runs once every two hours to Carlisle from Cockermouth. If we had a driver in the family we'd be taking ourselves and paying for petrol and car parking so I don't know why they can't ask patients to pay the costs of the transport service instead of restricting it: It would still be cheaper than going by taxi.
"Significant improvement." Good news, anyway. I'd still like to have seen the evidence with my own eyes but I guess I should be happy with the answer and stop complaining.
I did learn that the bad constipation I have experienced when taking the heavy dose of temozolomide is caused by the anti-sickness tablets I take to avoid heaving them up again. The doctor suggested I take just one tablet instead of two a day. So far I have never felt like being sick at all and during the radiotherapy when I was taking a lesser dose of temozolomide I stopped taking the anti-sickness pills altogether. So this looks like something I can try.
It seems the public service cuts are beginning to bite. North Cumbria NHS Trust has one of the biggest deficits in the country I believe, and the effects are being felt by the drivers in the ambulance and transport service for whom all overtime has stopped. Patients now must book their own transport but have to provide increasing justification that they need it. I think that now my outpatient visits are down to once every 4 weeks we will have to take up some of the offers of lifts we have received, or consider getting the 600 bus which runs once every two hours to Carlisle from Cockermouth. If we had a driver in the family we'd be taking ourselves and paying for petrol and car parking so I don't know why they can't ask patients to pay the costs of the transport service instead of restricting it: It would still be cheaper than going by taxi.
"Significant improvement." Good news, anyway. I'd still like to have seen the evidence with my own eyes but I guess I should be happy with the answer and stop complaining.
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!
14 August - Full of energy
I'm starting to feel like a bit of a fraud. This afternoon we went for a walk around town. I haven't felt like I had so much energy for a long time. Instead of supporting myself on the walking stick I was twirling it like a sergeant major. If I could have got to one of the nearby hills I reckon I could have hiked up it with ease. Olga was struggling to keep up.
Perhaps the hospital got the tissue samples mixed up and the cancerous tissue wasn't mine at all?
Perhaps the hospital got the tissue samples mixed up and the cancerous tissue wasn't mine at all?
29 July - Feeling much better
Despite getting a lot less sleep than I normally would during the last couple of days I have felt much better. I have felt positive enough to bring back out of the cupboard the hobby radio stuff I'd put away thinking that I probably wouldn't use it again and might as well sell some of it. I can't say that there is any long term plan or joined-up thinking in anything I am doing but my ability to do stuff is definitely getting back to normal.
Physically I'm feeling fitter, too. When we set off for a walk into town this morning I felt I had enough energy to hike up a small fell. True, I might not have managed it had I the opportunity to try. But I'm certainly managing a brisker walking pace now.
Because of silly superstitions I'm not going to make any optimistic statements that might turn into "famous last words." The trouble with having an engineering background is that I am still predisposed to believe what the experts tell me. I find it strange that I am now unfazed by the knowledge that if I am still here in a year's time I probably won't be for much longer.
But whether my mind has dealt with it or whether I don't really believe it because I don't feel that unwell I can't honestly say. If the migraine-like headache returned I might change my tune, which is why I don't want to tempt fate by making any brave claims about being the guy who against all the odds is going to beat Glioblastoma Multiforme Grade 4. So I'll just carry on taking one day at a time, hoping that with a bit of luck and staying as fit as I can I'll survive for longer than many other people with the same condition.
Physically I'm feeling fitter, too. When we set off for a walk into town this morning I felt I had enough energy to hike up a small fell. True, I might not have managed it had I the opportunity to try. But I'm certainly managing a brisker walking pace now.
Because of silly superstitions I'm not going to make any optimistic statements that might turn into "famous last words." The trouble with having an engineering background is that I am still predisposed to believe what the experts tell me. I find it strange that I am now unfazed by the knowledge that if I am still here in a year's time I probably won't be for much longer.
But whether my mind has dealt with it or whether I don't really believe it because I don't feel that unwell I can't honestly say. If the migraine-like headache returned I might change my tune, which is why I don't want to tempt fate by making any brave claims about being the guy who against all the odds is going to beat Glioblastoma Multiforme Grade 4. So I'll just carry on taking one day at a time, hoping that with a bit of luck and staying as fit as I can I'll survive for longer than many other people with the same condition.
27 July - Exercise bike
Still not sleeping much. Don't know why. The steroids are down to one tablet a day. I'm not anxious or depressed about my situation, not laying awake thinking dark or bitter thoughts. In that respect I seem to be dealing with it better than Olga. I'm just taking each day as it comes and finding things to keep my mind occupied. It's a bit like being on holiday only without the car to go anywhere or the energy to do more strenuous activities.
Yesterday, despite the lack of sleep, I noticed an improvement in my visual and motor functions. I managed to do some quite tricky work with the soldering iron.
Yesterday afternoon we took delivery of an exercise bicycle which this morning we put together. After that I rode a virtual 5km. Hopefully it will not be a five minute wonder like the one I had a few years ago which ended up in a charity shop when I got fed up with falling over it. At least we now have extra space for it - in the garage.
I do have a reason for getting this exercise bike as it will mean I won't have an excuse not to exercise if the weather turns cold and wet which, this being Cumbria in North West England, it is bound to do eventually.
The exercise bike is an interesting example of retail profit margins. We saw it in the Argos catalogue where it was being sold for £199.99, reduced from £299.99. But when Olga went to the Argos website the same model was now being sold for £89.99, previous price £99.99. However Argos would only promise delivery within 21 days and we wanted it now, so I did some searching and eventually got the same machine from an eBay seller of retail returns for £74.95 plus £4.95 shipping by next day courier. Which is about what it is actually worth, to look at it. But it will do the job just fine, I think.
Yesterday, despite the lack of sleep, I noticed an improvement in my visual and motor functions. I managed to do some quite tricky work with the soldering iron.
Yesterday afternoon we took delivery of an exercise bicycle which this morning we put together. After that I rode a virtual 5km. Hopefully it will not be a five minute wonder like the one I had a few years ago which ended up in a charity shop when I got fed up with falling over it. At least we now have extra space for it - in the garage.
I do have a reason for getting this exercise bike as it will mean I won't have an excuse not to exercise if the weather turns cold and wet which, this being Cumbria in North West England, it is bound to do eventually.
The exercise bike is an interesting example of retail profit margins. We saw it in the Argos catalogue where it was being sold for £199.99, reduced from £299.99. But when Olga went to the Argos website the same model was now being sold for £89.99, previous price £99.99. However Argos would only promise delivery within 21 days and we wanted it now, so I did some searching and eventually got the same machine from an eBay seller of retail returns for £74.95 plus £4.95 shipping by next day courier. Which is about what it is actually worth, to look at it. But it will do the job just fine, I think.
24 July - A 5km walk
Went for a walk of about 5km over the fields to the north of the town on a glorious sunny day. The walk involved some gentle climbing up out of the valley to a point where we could look down over the town and the distant fells.
I couldn't have managed it without the walking stick, both for extra propulsion up the hill and for steadiness. Although I'm walking quite strongly my head still spins a bit and it isn't uncommon for me to almost lose my balance, especially if I turn to look at the view or something in a passing shop window rather than looking straight ahead and concentrating on where I'm going. I'm guessing this is a brain problem not a fitness problem and have no idea whether it will clear up or not.
It is good to feel strength in my legs and to do something not too different from what I would normally have done before the tumour.
I couldn't have managed it without the walking stick, both for extra propulsion up the hill and for steadiness. Although I'm walking quite strongly my head still spins a bit and it isn't uncommon for me to almost lose my balance, especially if I turn to look at the view or something in a passing shop window rather than looking straight ahead and concentrating on where I'm going. I'm guessing this is a brain problem not a fitness problem and have no idea whether it will clear up or not.
It is good to feel strength in my legs and to do something not too different from what I would normally have done before the tumour.
19 July - Man in the mask
To the Radiotherapy Department at Carlisle Infirmary for the first step to the actual treatment. This is the manufacture of the mask or mould that will hold my head in the correct position for the radiotherapy treatment.
I'm impressed by the efficiency. They are ready on the dot of the appointment. The nurse technician takes care to explain all the treatment I will receive as well as what they plan to do during this visit.
For making the mask I lie down on a hard bed and a neck rest is selected to make me comfortable. The mask starts off as something that looks a bit like a thin toilet seat with a cut-out at the front. There are studs round the edge of the "seat" that lock into the bed, and the hole in the middle has a coarse mesh thermoplastic material stretched over it.
The thermoplastic is softened in hot water and then it is placed over my head. The studs go in with a snap and the two nurses work quickly moulding the material to the shape of my head paying particular attention to my nose and ears. It is not an unpleasant sensation, like having a hot towel on your face.
After a few minutes the mould is starting to set and soon after that the job is done. The studs come out and I can sit up and see the finished result.
Then off for a blood test in preparation for a CT scan which will be done on Thursday. This, I am advised, is just part of the preparatory work and not a diagnostic scan so I don't need to worry about receiving more bad news after it.
That's it for today, so we catch a bus into Carlisle city centre for some shopping and lunch.
I'm impressed by the efficiency. They are ready on the dot of the appointment. The nurse technician takes care to explain all the treatment I will receive as well as what they plan to do during this visit.
For making the mask I lie down on a hard bed and a neck rest is selected to make me comfortable. The mask starts off as something that looks a bit like a thin toilet seat with a cut-out at the front. There are studs round the edge of the "seat" that lock into the bed, and the hole in the middle has a coarse mesh thermoplastic material stretched over it.
The thermoplastic is softened in hot water and then it is placed over my head. The studs go in with a snap and the two nurses work quickly moulding the material to the shape of my head paying particular attention to my nose and ears. It is not an unpleasant sensation, like having a hot towel on your face.
After a few minutes the mould is starting to set and soon after that the job is done. The studs come out and I can sit up and see the finished result.
Then off for a blood test in preparation for a CT scan which will be done on Thursday. This, I am advised, is just part of the preparatory work and not a diagnostic scan so I don't need to worry about receiving more bad news after it.
That's it for today, so we catch a bus into Carlisle city centre for some shopping and lunch.
14 July - A trip to Keswick
We went to Keswick for the day on the bus. It was the first time I had been out of Cockermouth since hospital and I wanted to see that I could still go places, even if not the places I would normally have gone on a day like this. The weather during the last couple of weeks has been gorgeous and I would undoubtedly have spent several days out walking on the fells were it not for this damned brain tumour. The thought that I have missed this opportunity, may not even have the opportunity again, depresses me so I try not to think about it.
In Keswick we bought a cool soft hat to hide my embarrassment when we cut my hair off in a couple of days time in preparation for the radiotherapy. It doesn't have to come off but everyone says that it will fall out in clumps where the X-rays go in so I may as well get rid of it from the outset.
Then we walked down to the lake, slowly and in stages, and sat in the sun enjoying the view. We had a salad lunch at the Theatre by the Lake, then walked slowly back to the bus station. We probably only walked a couple of miles in total but my calf muscles felt like they had done a full hike.
So a good day, all things considered. After treatment starts I won't have the energy to even walk round the block, I'm reliably informed, so whilst I can it's important to make the most of it.
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