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.
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.
21 July - CT scan
Back to Carlisle for the CT scan. This time we went using the hospital car service. It saved us a taxi fare but it was a bit of a palaver to arrange; we had to be ready an hour earlier than if we had booked our own taxi and the service can't usually accommodate spouses or partners who wish to accompany patients to their appointments as the cars are usually full. So I expect we'll be using taxis when I start going for treatment.
At the hospital a nurse inserted a big needle with a plumbing attachment into a vein in my arm so they could inject the contrast dye for the scanner. Then off for a scan using the radiology department's brand new Philips CT scanner, commissioned this week, the wait for which I suspect is one reason why treatment is being a bit slow at getting started.
Back on the bed, head on the neck rest and the mask made on Tuesday was clipped into place. Momentarily a bit unnerving as it held my head more firmly than I remembered, but a few deep breaths and calm thoughts about the good this was going to do relaxed me. The doctor injected the contrast dye into the bloodstream, then I'm moved into the scanner which was very quick.
And that was it. There will be an appointment for a further scan after the doctor has worked out the plan. Until then I have another couple of weeks of "freedom."
At the hospital a nurse inserted a big needle with a plumbing attachment into a vein in my arm so they could inject the contrast dye for the scanner. Then off for a scan using the radiology department's brand new Philips CT scanner, commissioned this week, the wait for which I suspect is one reason why treatment is being a bit slow at getting started.
Back on the bed, head on the neck rest and the mask made on Tuesday was clipped into place. Momentarily a bit unnerving as it held my head more firmly than I remembered, but a few deep breaths and calm thoughts about the good this was going to do relaxed me. The doctor injected the contrast dye into the bloodstream, then I'm moved into the scanner which was very quick.
And that was it. There will be an appointment for a further scan after the doctor has worked out the plan. Until then I have another couple of weeks of "freedom."
20 July - Treatment and prognosis
I finally felt brave enough to do a bit of online research into my brain tumour, which is described as a Glioblastoma Multiforme Grade 4. According to Wikipedia it is the most common and most aggressive type of malignant brain tumour. Despite this, it occurs in only 2 to 3 in every 100,000 people in Europe and North America. So it seems that I, who normally never even wins the club raffle, really hit the jackpot with this one.
The treatment I am receiving - craniotomy to remove as much of the tumour as possible, followed by a combined course of conformal radiotherapy and temozolomide chemotherapy - is the most common and generally regarded as most effective form of treatment. Nevertheless prognosis is poor. In a clinical trial of 575 patients receiving this treatment the median survival rate was 14.6 months. (Without chemotherapy this was reduced to 12 months.)
The most important factor determining the survival period would seem to be how much of the tumour was removed during the craniotomy. A typical tumour contains 10^11 cancerous cells. This is reduced to 10^9 if the surgeons remove 98% of it. Radiotherapy can kill 98% of those, reducing the number to 10^9. But that is still a lot of cells that will eventually multiply, grow the tumour and kill the patient.
There are reasons to be optimistic. Olga saw the surgeon as I came out of the operating theatre. She says he looked pleased, was smiling and said the operation went very well and I would be OK. So perhaps he got more than 98% of the bugger. Time will tell.
Temozolomide is a chemotherapy drug that is used to treat newly diagnosed glioblastoma in patients that are fit enough to look after themselves. It can be taken orally as it has the ability to penetrate the barrier to the brain so that it can reach the cells it is designed to treat. It works by blocking the ability of the cancerous cells to make DNA so they are unable to replicate. It also increases the effectiveness of the radiotherapy.
Although temozolomide has side effects, including nausea and a weakening of the immune system, it is not as bad as some chemotherapy drugs according to some sources. If I can avoid picking up any bugs hopefully it will not be too bad.
The reason it takes a long time to start the actual radiotherapy is apparently that the planning is very time consuming. A lot of precise calculations have to be made in order to target the X-rays on the cancerous cells in the brain while avoiding everything else. The nurse technician yesterday said "the maths can be complicated." I had visions of teams of people slaving over calculators but I presume they use computer modelling.
Given how I feel right now and what I now know about the treatment, I'm hopeful that I can beat that 14.6 months prognosis by a significant margin.
The treatment I am receiving - craniotomy to remove as much of the tumour as possible, followed by a combined course of conformal radiotherapy and temozolomide chemotherapy - is the most common and generally regarded as most effective form of treatment. Nevertheless prognosis is poor. In a clinical trial of 575 patients receiving this treatment the median survival rate was 14.6 months. (Without chemotherapy this was reduced to 12 months.)
The most important factor determining the survival period would seem to be how much of the tumour was removed during the craniotomy. A typical tumour contains 10^11 cancerous cells. This is reduced to 10^9 if the surgeons remove 98% of it. Radiotherapy can kill 98% of those, reducing the number to 10^9. But that is still a lot of cells that will eventually multiply, grow the tumour and kill the patient.
There are reasons to be optimistic. Olga saw the surgeon as I came out of the operating theatre. She says he looked pleased, was smiling and said the operation went very well and I would be OK. So perhaps he got more than 98% of the bugger. Time will tell.
Temozolomide is a chemotherapy drug that is used to treat newly diagnosed glioblastoma in patients that are fit enough to look after themselves. It can be taken orally as it has the ability to penetrate the barrier to the brain so that it can reach the cells it is designed to treat. It works by blocking the ability of the cancerous cells to make DNA so they are unable to replicate. It also increases the effectiveness of the radiotherapy.
Although temozolomide has side effects, including nausea and a weakening of the immune system, it is not as bad as some chemotherapy drugs according to some sources. If I can avoid picking up any bugs hopefully it will not be too bad.
The reason it takes a long time to start the actual radiotherapy is apparently that the planning is very time consuming. A lot of precise calculations have to be made in order to target the X-rays on the cancerous cells in the brain while avoiding everything else. The nurse technician yesterday said "the maths can be complicated." I had visions of teams of people slaving over calculators but I presume they use computer modelling.
Given how I feel right now and what I now know about the treatment, I'm hopeful that I can beat that 14.6 months prognosis by a significant margin.
Subscribe to:
Posts (Atom)