On Sunday 7 April I went for the day to Blackpool, not to be beside the seaside but to visit a radio and electronics show. The day went without a hitch - to my great relief as the night before I had experienced a mild attack of gallstone-induced back pain.
It was good to be doing something like this again. The only problem was that I am still a bit unsteady on my feet. I nearly lost my balance a couple of times. The extreme vertigo I experience means I keep well away from stairs unless there is a stout rail to hang on to or Olga is there for support.
I have spent some time searching out other people's experiences of recovery from brain tumours to find out if this unsteadiness is common at all. I suppose I should just count my blessings because most people it seems end up in a wheelchair after treatment and never recover at all. But a few have mentioned balance problems. All of the other side effects of treatment seem to have disappeared, but I'm rather afraid that this problem is going to be with me for the rest of my life.
22 March - A most unsatisfactory appointment
Today was to be the day of our long-awaited appointment to see the oncologist, find out more about my MRI scan result and the plan for ongoing treatment, and to ask whether I can apply for reinstatement of my driving licence.
The weather was atrocious. Fine snow and a gusty wind made the roads and pavements treacherous. The Cockermouth to Carlisle road was closed along almost its entire length. The news said it was because of drifting snow but our hospital transport driver had heard that there had been a fatal accident. We had to make a 20 mile detour via Maryport to get to the hospital at Carlisle. Despite this, we were in time for my appointment.
The oncologist, Dr K, did not appear to be around and eventually we were called in to see another doctor - the one I had spoken to on the phone a month previously after we had pressed for this appointment. He knew what we wanted to talk about from our phone conversation but was unable to tell us anything new. He would not elaborate on his description of my MRI scan result as "satisfactory." Nor could he tell us anything about my eligibility to apply for my driving licence, or about my ongoing treatment. For that, we would have to see Dr K, whom we had expected to see today, but who was apparently in India on holiday.
To say we were disappointed was an understatement. We were also quite annoyed as well. We had been out on an 80-mile round trip on snow-covered roads, risking life and limb, wasting not only our time but that of a hospital transport volunteer driver, to learn absolutely nothing. Why had they not just phoned, cancelled the appointment and given us a new one for after our oncologist's return from holiday? We would have been annoyed and disappointed about that but the end result would have been the same and at least we would not have had a wasted journey.
The weather was atrocious. Fine snow and a gusty wind made the roads and pavements treacherous. The Cockermouth to Carlisle road was closed along almost its entire length. The news said it was because of drifting snow but our hospital transport driver had heard that there had been a fatal accident. We had to make a 20 mile detour via Maryport to get to the hospital at Carlisle. Despite this, we were in time for my appointment.
The oncologist, Dr K, did not appear to be around and eventually we were called in to see another doctor - the one I had spoken to on the phone a month previously after we had pressed for this appointment. He knew what we wanted to talk about from our phone conversation but was unable to tell us anything new. He would not elaborate on his description of my MRI scan result as "satisfactory." Nor could he tell us anything about my eligibility to apply for my driving licence, or about my ongoing treatment. For that, we would have to see Dr K, whom we had expected to see today, but who was apparently in India on holiday.
To say we were disappointed was an understatement. We were also quite annoyed as well. We had been out on an 80-mile round trip on snow-covered roads, risking life and limb, wasting not only our time but that of a hospital transport volunteer driver, to learn absolutely nothing. Why had they not just phoned, cancelled the appointment and given us a new one for after our oncologist's return from holiday? We would have been annoyed and disappointed about that but the end result would have been the same and at least we would not have had a wasted journey.
25 February - More waiting
Just returned from the West Cumberland hospital for a consultation with the doctor. First they took more blood from me. Then we had to wait for the results - over two and a half hours. This time, I took a book with me.
After all the results were in we waited for the doctor. He told us my blood was much better - which didn't surprise us as I had no pains in my back over the last few days and my urine had gone back to its normal colour. The question is whether one of my gallstones is blocking one of the drains - I'm referring to my internal plumbing not the house drains! It will take an MRI scan to discover this. One has been booked but we are still waiting for the appointment.
One finding that did concern me: the CT scan had by chance revealed a small cyst on one of my kidneys. This has been referred to a renal specialist for follow-up. I've read about people who have had one type of cancer and then develop other cancers. I hope this turns out to be only a cyst, not a tumour.
After all the results were in we waited for the doctor. He told us my blood was much better - which didn't surprise us as I had no pains in my back over the last few days and my urine had gone back to its normal colour. The question is whether one of my gallstones is blocking one of the drains - I'm referring to my internal plumbing not the house drains! It will take an MRI scan to discover this. One has been booked but we are still waiting for the appointment.
One finding that did concern me: the CT scan had by chance revealed a small cyst on one of my kidneys. This has been referred to a renal specialist for follow-up. I've read about people who have had one type of cancer and then develop other cancers. I hope this turns out to be only a cyst, not a tumour.
20 February - A lot of waiting around
I was in enough pain that I decided to see any GP I could get. We saw a young lady doctor who got us an appointment the next day at the West Cumberland Hospital.
The appointment was for 11am and we weren't finished until late afternoon, but there was a lot of waiting around between tests. First I had a blood test - which had been done by the GP surgery at least twice previously - and an ultrasound scan of my abdominal area - which had also been done previously at Carlisle. Then I had a CT scan of my abdomen. All this proved was that I have a lot of gallstones - which I thought we already knew from the tests I'd had done previously. I don't like to criticize the NHS but I can't help thinking it could be organized a bit more efficiently.
Finally after all the results were in we saw a doctor, who began by admitting that he was not going to be the one treating me as he was a general doctor not a gastroenterologist. So we won't know what happens next until my results have been seen by a specialist consultant, which we don't have at our local hospital. However, I understand that there are two possible outcomes. One is that they will put a tube down my throat and try to get the gallstones out that way - which doesn't sound like a fun time to me but which is deemed preferable as it avoids surgery. The other outcome is surgery to remove the gall bladder.
In the meantime I still have a bladder full of gallstones which continue to make their presence known by giving me needles of pain from time to time.
The appointment was for 11am and we weren't finished until late afternoon, but there was a lot of waiting around between tests. First I had a blood test - which had been done by the GP surgery at least twice previously - and an ultrasound scan of my abdominal area - which had also been done previously at Carlisle. Then I had a CT scan of my abdomen. All this proved was that I have a lot of gallstones - which I thought we already knew from the tests I'd had done previously. I don't like to criticize the NHS but I can't help thinking it could be organized a bit more efficiently.
Finally after all the results were in we saw a doctor, who began by admitting that he was not going to be the one treating me as he was a general doctor not a gastroenterologist. So we won't know what happens next until my results have been seen by a specialist consultant, which we don't have at our local hospital. However, I understand that there are two possible outcomes. One is that they will put a tube down my throat and try to get the gallstones out that way - which doesn't sound like a fun time to me but which is deemed preferable as it avoids surgery. The other outcome is surgery to remove the gall bladder.
In the meantime I still have a bladder full of gallstones which continue to make their presence known by giving me needles of pain from time to time.
19 February - Gallstones redux
I'm in quite a lot of pain at the moment. Three or four times in the last few weeks I have had a pain in the small of my back that doesn't quite feel like normal back pain. At times it is quite excruciating and prevents me from sleeping at night. Sometimes painkillers help, sometimes they don't. Usually it wears off after a few hours.
[Too much detail alert] At around the time I have this pain, I notice that my urine is darker than normal. My stools are pale brown in colour instead of the normal dark brown. Today Olga noticed (no secrets from each other in this marriage!) that they were speckled with different sized black dots. [End of too much detail alert]
We think this is because of the gallstones I discovered back in November. A stone could have moved and blocked the bile duct so that bile is not going where it is supposed to. The black spots could be disintegrating gallstones. This is Olga's diagnosis. But a GP hinted that this could be what is happening the last time I saw the doc. At the time they (and me) felt that we should wait and hope that the problem clears up without surgical intervention.
This time has been the worst occurrence. And the pain has moved from the small of my back to my abdomen. Yesterday we made a doctors' appointment but the earliest we could see the GP I like was next Monday. After a disturbed night we decided this was too long to wait, so we have got an appointment with whoever was free this afternoon.
I don't think there is any connection between this and my brain tumour unless the gall bladder problem is a delayed side effect of all the drugs that were poured into me during my cancer treatment. This has certainly caused a lot more pain than the brain tumour did. I don't even feel like playing radio at the moment. Fingers crossed that the doctors can accurately diagnose and treat the problem.
[Too much detail alert] At around the time I have this pain, I notice that my urine is darker than normal. My stools are pale brown in colour instead of the normal dark brown. Today Olga noticed (no secrets from each other in this marriage!) that they were speckled with different sized black dots. [End of too much detail alert]
We think this is because of the gallstones I discovered back in November. A stone could have moved and blocked the bile duct so that bile is not going where it is supposed to. The black spots could be disintegrating gallstones. This is Olga's diagnosis. But a GP hinted that this could be what is happening the last time I saw the doc. At the time they (and me) felt that we should wait and hope that the problem clears up without surgical intervention.
This time has been the worst occurrence. And the pain has moved from the small of my back to my abdomen. Yesterday we made a doctors' appointment but the earliest we could see the GP I like was next Monday. After a disturbed night we decided this was too long to wait, so we have got an appointment with whoever was free this afternoon.
I don't think there is any connection between this and my brain tumour unless the gall bladder problem is a delayed side effect of all the drugs that were poured into me during my cancer treatment. This has certainly caused a lot more pain than the brain tumour did. I don't even feel like playing radio at the moment. Fingers crossed that the doctors can accurately diagnose and treat the problem.
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