Off to an appointment with the urologist this morning, to hear the result of the CT scan a few weeks ago.This was nothing to do with my brain tumour. One of my scans had showed something suspicious on a kidney, which we were afraid might be cancer. The good news was that whatever it is hasn't changed. so it probably isn't cancerous. As I haven't experienced any kidney-related problems such as blood in my urine my kidneys have been given a clean bill of health and we'll have another look in a year.
While we were there we asked the doctor if we could look at the last MRI brain scan, on which until now we had only had a verbal report.
There was nothing to see. Literally. Where the tumour had originally been there was nothing there. Definitely good news. Perhaps I could grow a few new brain cells there!
If I'm not exactly jumping for joy it's just because I'm still experiencing annoying symptoms like the blind spot in my vision, a hand tremor, the balance problem that is hampering my mobility, poor short term memory and inability to concentrate. But I'm not going to dwell on those for the moment.
So I may not have "beaten the bugger" but I've given it a jolly good thrashing. And It looks as if I'll be around for a couple of years yet. Olga and I will see in the new year with a glass of bubbly this year!
24 December - New treatment for glioblastoma tumours.
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.
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.
17 December - the best Christmas present
Yesterday we called the hospital to see if we could get the results of my MRI scan. We were told that the scan needed to be discussed with doctors in Newcastle. We thought that probably wouldn't happen until the new year now so we resigned ourselves to having to be patient. But this afternoon I received a call from the consultant oncologist in Carlisle. He informed me that the result was much better. No new growth of the tumour!
As you may guess I am pretty pleased about that. The news is the best Christmas present I could have wished for.
Happy Christmas!
As you may guess I am pretty pleased about that. The news is the best Christmas present I could have wished for.
Happy Christmas!
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.
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.
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.
3 November - Brainless
It has been a few weeks since the operation to remove my brain tumour and I'm wondering whether the surgeons threw away the wrong part! Trying to make what should have been a simple modification to a program listing, my brain could not figure out what to do at all. Added to the difficulties caused by my patchy vision and I had to give it up as a bad job. It's very frustrating. I've always tinkered about with programming to make things work the way I want them to, and having to settle for the status quo is hard.
My vision is just about adequate for normal purposes - I just spotted a sparrowhawk in thr hedge at the end of the garden so it's not that bad.. But a tendency to double vision and overlaying one line of text to another makes typing and proof reading text difficult. Please excuse typos and spelling errors - I just don't spot them any more.
My vision is just about adequate for normal purposes - I just spotted a sparrowhawk in thr hedge at the end of the garden so it's not that bad.. But a tendency to double vision and overlaying one line of text to another makes typing and proof reading text difficult. Please excuse typos and spelling errors - I just don't spot them any more.
28 October - A hole in my vision
I have been avoiding use of the computer ever since I returned from my operation. I have become aware of a large blind spot in my left hand side lower peripheral vision.
If I sit with my arms straight down by my sides and then raise my forearms so that they are at right angles in front of me and flap my hands, I cannot see my left hand moving. I am not sure at the moment if it is only my left eye or my vision in general that are affected. Experiments blocking out one eye have so far been inconclusive.
Using the computer has become very frustrating. A non-touch typist, I rely on being able to look at the keyboard and I am often hitting the key to one side of the one I want. It also makes checking for typos difficult. I have trouble finding the cursor. My brain seems to try to compensate for the problem by superimposing one column of text over another. Reading is awkward for much the same reason.
I am pretty sure that this is at the root of what I have been describing as a balance problem. The problem is the blind spot on my left hand side. I tend to bump into things on my left. I don't see properly where I am putting my left foot. This makes me react as if I am going to step into a void. I am really only comfortable walking if I have something to hold on to. A walking stick helps but I prefer holding on to Olga's arm when moving, to provide a physical point of reference.
I first became aware of the problem a day or two after my operation. I mentioned it to a couple of doctors who came to see me. One commented that perhaps they had nicked the optic nerve. Since then I have had one period of clear vision. I did have similar problems after my first brain tumour removal operation and they did get better after several weeks so perhaps this will clear up by itself.
The doctors have all told me that I have done very well surviving a GBM4 tumour by more than two years. I get the feeling that I should be thankful for what I have got instead of carping about what I haven't. As I am never likely to get my driving licence back with this type of tumour this disability does not have much impediment on what I can do at the moment.
If I sit with my arms straight down by my sides and then raise my forearms so that they are at right angles in front of me and flap my hands, I cannot see my left hand moving. I am not sure at the moment if it is only my left eye or my vision in general that are affected. Experiments blocking out one eye have so far been inconclusive.
Using the computer has become very frustrating. A non-touch typist, I rely on being able to look at the keyboard and I am often hitting the key to one side of the one I want. It also makes checking for typos difficult. I have trouble finding the cursor. My brain seems to try to compensate for the problem by superimposing one column of text over another. Reading is awkward for much the same reason.
I am pretty sure that this is at the root of what I have been describing as a balance problem. The problem is the blind spot on my left hand side. I tend to bump into things on my left. I don't see properly where I am putting my left foot. This makes me react as if I am going to step into a void. I am really only comfortable walking if I have something to hold on to. A walking stick helps but I prefer holding on to Olga's arm when moving, to provide a physical point of reference.
I first became aware of the problem a day or two after my operation. I mentioned it to a couple of doctors who came to see me. One commented that perhaps they had nicked the optic nerve. Since then I have had one period of clear vision. I did have similar problems after my first brain tumour removal operation and they did get better after several weeks so perhaps this will clear up by itself.
The doctors have all told me that I have done very well surviving a GBM4 tumour by more than two years. I get the feeling that I should be thankful for what I have got instead of carping about what I haven't. As I am never likely to get my driving licence back with this type of tumour this disability does not have much impediment on what I can do at the moment.
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.
27 September - MRI results
GP appointment this morning, and the results of my MRI scan are in. My tumour has increased in size since January but the more accurate MRI scan gives a better picture of what has happened. There is a lot of swelling (oedema) in the area of the tumour which makes it look bigger than it is. This is quite common with brain tumours, apparently. The brain does not have an effective way to get rid of dead tumour cells. So some of the apparent increase could be a result of the treatment.
I was impressed with the IT systems that our NHS has and the way it allows all the doctors involved - including our GP - to be kept up to date on what is happening. My case is going to be discussed by a multi-disciplinary team (MDT) consisting of neurologist, oncologist, surgeon and anyone else who might have an input to it, from 3 different hospitals. It appears that this is due to happen some time at the beginning of October. Until then we just have to be patient.
In the meantime I will carry on with the steroids. I'm quite happy with the way I'm feeling at the moment. Even the taxi driver taking us to the surgery said I'm looking well. Apart from the balance problem whilst walking - which discourages me from taking much exercise - I think I'm doing quite well. I am becoming a bit of a couch potato and spend most of my time sitting in my recliner listening to classical music via internet radio. It could be a lot worse.
For the time being I've given up hope of ever having my driving licence reinstated. Olga has given up driving lessons as well. She was finding learning to drive too stressful on top of worrying about my health. Sometimes she didn't sleep at night and then had to try to drive in the morning. So I think we'll just have to stay a no-car family. The thing to be thankful for is that I still have mobility - even if not perfect mobility - on my own two feet.
I was impressed with the IT systems that our NHS has and the way it allows all the doctors involved - including our GP - to be kept up to date on what is happening. My case is going to be discussed by a multi-disciplinary team (MDT) consisting of neurologist, oncologist, surgeon and anyone else who might have an input to it, from 3 different hospitals. It appears that this is due to happen some time at the beginning of October. Until then we just have to be patient.
In the meantime I will carry on with the steroids. I'm quite happy with the way I'm feeling at the moment. Even the taxi driver taking us to the surgery said I'm looking well. Apart from the balance problem whilst walking - which discourages me from taking much exercise - I think I'm doing quite well. I am becoming a bit of a couch potato and spend most of my time sitting in my recliner listening to classical music via internet radio. It could be a lot worse.
For the time being I've given up hope of ever having my driving licence reinstated. Olga has given up driving lessons as well. She was finding learning to drive too stressful on top of worrying about my health. Sometimes she didn't sleep at night and then had to try to drive in the morning. So I think we'll just have to stay a no-car family. The thing to be thankful for is that I still have mobility - even if not perfect mobility - on my own two feet.
18 September - MRI scan
To the hospital in Carlisle this afternoon for the long-awaited MRI scan of my brain. Half an hour of listening to clonks and buzzes from the scanner.
I'm told that the results will get back to the requesting doctor in about a week.So it will be several more days of anxious waiting before I find out what the next steps will be.
In the meantime I'm quite comfortable on 8mg of dexamethasone steroids. But Olga is worried about my right eye which is very red. That's the same side as my tumour. Coincidence or not? Steroids and clomipramine can both cause increased pressure in the eyes, apparently. If it isn't one thing, it's another.
I'm told that the results will get back to the requesting doctor in about a week.So it will be several more days of anxious waiting before I find out what the next steps will be.
In the meantime I'm quite comfortable on 8mg of dexamethasone steroids. But Olga is worried about my right eye which is very red. That's the same side as my tumour. Coincidence or not? Steroids and clomipramine can both cause increased pressure in the eyes, apparently. If it isn't one thing, it's another.
12 September - bad news
Just got back from the GP surgery to hear about my CT scan result. It was not what we wanted to hear.
My tumour has increased in size. It has approximately doubled in length since January.
The news is not entirely unexpected given the symptoms I have been experiencing. But it's a bit of a shock to hear it confirmed nevertheless. The last couple of years have lulled me into a sense of feeling that things could just go on as they are now, long into the future.Today is a reminder that this isn't over yet.
What happens next? We don't know. We will have to wait and see. The GP will alert my other doctors about the change in my status. But until they decide on a course of action we can only speculate.
My tumour has increased in size. It has approximately doubled in length since January.
The news is not entirely unexpected given the symptoms I have been experiencing. But it's a bit of a shock to hear it confirmed nevertheless. The last couple of years have lulled me into a sense of feeling that things could just go on as they are now, long into the future.Today is a reminder that this isn't over yet.
What happens next? We don't know. We will have to wait and see. The GP will alert my other doctors about the change in my status. But until they decide on a course of action we can only speculate.
4 September - Return from London
Just returned from a very nice break in London. Considering that at one point I felt so poorly that I doubted whether I would be able to go, The trip went without problems. The dexomethasone steroids made me feel a lot better. My balance improved but only by a little. We took advantage of disabled facilities to borrow a wheelchair in most of the places we visited. I was a bit reluctant to do this at first as I was aware that none of the people I know of who began using a wheelchair are still here today, but it did make things easier.
Whilst we were away we received an appointment at the hospital for a scan tomorrow afternoon (Thursday.). This is for a CT scan not the MRI scan we were expecting.Ours is no to reason why. As long as it shows what it needs to.
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| At the Victoria and Albert Museum |
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.
19 August - Taking a tumble
Life goes on with nothing particularly noteworthy to write about. The unsteadiness on my feet that I have often complained about continues to be a concern. I don't go anywhere without a walking stick or without Olga. I often take her hand to steady myself. We must look like a couple of newly-weds walking along the street hand in hand!
Yesterday I went down to the bottom of the garden to reset the weather station which had stopped working. When I got there I realised I would need a blunt object to poke the reset button. I turned around to go back for it and found myself falling to my right. I put my foot out to save myself but I tripped over the border to the raised bed. No injury was caused other than to a few plants which cushioned my fall, and my pride of course.
We are booked to spend a few days in London the weekend after next so I hope I can keep my feet then.Olga wants to see the state rooms at Buckingham Palace and has arranged a wheelchair for me for the visit. Having to use a wheelchair feels to me like the thin end of the wedge and I tried to resist the idea but I find it tiring standing around and the sweat runs down my back with the effort of keeping upright so it is probably the most practical solution. No doubt the Royal Albert Hall will also present some challenges!
I am a little concerned that this balance problem might be a sign that my tumour is growing again. Olga found several possible links between radiotherapy and balance issues and vertigo. Really I should be getting this information from my doctors. I would like another MRI scan soon to put my mind at rest about what is happening to my brain. But my next doctor's appointment is not until October so I'm unlikely to receive another scan much before then.
Yesterday I went down to the bottom of the garden to reset the weather station which had stopped working. When I got there I realised I would need a blunt object to poke the reset button. I turned around to go back for it and found myself falling to my right. I put my foot out to save myself but I tripped over the border to the raised bed. No injury was caused other than to a few plants which cushioned my fall, and my pride of course.
We are booked to spend a few days in London the weekend after next so I hope I can keep my feet then.Olga wants to see the state rooms at Buckingham Palace and has arranged a wheelchair for me for the visit. Having to use a wheelchair feels to me like the thin end of the wedge and I tried to resist the idea but I find it tiring standing around and the sweat runs down my back with the effort of keeping upright so it is probably the most practical solution. No doubt the Royal Albert Hall will also present some challenges!
I am a little concerned that this balance problem might be a sign that my tumour is growing again. Olga found several possible links between radiotherapy and balance issues and vertigo. Really I should be getting this information from my doctors. I would like another MRI scan soon to put my mind at rest about what is happening to my brain. But my next doctor's appointment is not until October so I'm unlikely to receive another scan much before then.
1 August - No progress
Today we received a reply from the DVLA about my driving licence application. The letter said that they could not progress this because they were still waiting for a reply from my consultant. This did not entirely surprise me as the doctor we saw a couple of weeks ago had told us there was no reply on my file. I would be very angry if I thought that would achieve anything besides raising my blood pressure.
We telephoned the consultant's secretary who told us that they had received a reminder. So DVLA are doing their job, it's the doctors that are the problem. There is not much we can do other than phone every couple of days until they get fed up with hearing from us.
This is so annoying. I don't have time to waste on unnecessary delays. My life is on hold until I get a decision.
We telephoned the consultant's secretary who told us that they had received a reminder. So DVLA are doing their job, it's the doctors that are the problem. There is not much we can do other than phone every couple of days until they get fed up with hearing from us.
This is so annoying. I don't have time to waste on unnecessary delays. My life is on hold until I get a decision.
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.
18 June - Gall bladder out
Just returned from Carlisle where I had my gall bladder operation. All went well, there were no complications. Not feeling any pain, just a little tenderness in the area of the wounds where they went in to do the keyhole surgery.
I'm supposed now to take things easy for a few weeks, and to stay off fatty foods for a few months.
Glad this is behind me now, and I can get back to beating cancer.
I'm supposed now to take things easy for a few weeks, and to stay off fatty foods for a few months.
Glad this is behind me now, and I can get back to beating cancer.
14 June - Another 12 weeks wait
Today I received a letter from the DVLA about my driving licence application. They have received medical reports from my doctors but it may take up to 12 weeks for consideration. Nothing to do but wait (im)patiently.
10 June - One week to surgery
By this time tomorrow week I should have had the surgery to remove my gall bladder. The operation will take place at the Cumberland Infirmary, Carlisle. At least I think it will. That's what I thought we agreed when the surgeon's secretary phoned last week. But when an envelope arrived on Saturday containing a colour leaflet showing how to get to the Carlisle hospital the letter enclosed said that I should attend West Cumberland Hospital which is in Whitehaven. Confused? We were.
This morning we had to telephone the secretary and make sure we were all on the same page, as it were. I will be having my surgery in Carlisle. But it does make you wonder if they make silly mistakes like that what else they get wrong. Fingers crossed.
This morning we had to telephone the secretary and make sure we were all on the same page, as it were. I will be having my surgery in Carlisle. But it does make you wonder if they make silly mistakes like that what else they get wrong. Fingers crossed.
26 May - A summit reached
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.
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.
14 May - My 60th Birthday
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| Olga and I on my 60th birthday |
11 May - DVLA replies
After my last appointment with my consultant oncologist, who seemed satisfied that I would be able to drive, I wrote to the DVLA (Driver and Vehicle Licensing Agency) enclosing the completed forms that they had sent me after my earlier enquiry several months ago to reapply for my driving license. Today I received a reply.
The reply said that they had written to my consultant and expected a reply "within six weeks." The rest of the letter seemed designed to prepare me to wait a long time. Their enquiries "can take some time to complete" it said. The rest of the letter could be summed up as "don't contact us, we will contact you."
Only in my wildest dreams did I expect the letter would contain a new driving license. But the knowledge that I will need to wait weeks before I get any nearer to getting back on the road is quite depressing.
The reply said that they had written to my consultant and expected a reply "within six weeks." The rest of the letter seemed designed to prepare me to wait a long time. Their enquiries "can take some time to complete" it said. The rest of the letter could be summed up as "don't contact us, we will contact you."
Only in my wildest dreams did I expect the letter would contain a new driving license. But the knowledge that I will need to wait weeks before I get any nearer to getting back on the road is quite depressing.
22 April - A slight decrease
Today we went for a consultation with the oncologist - the one I should have had a month ago. After the usual enquiries as to how I was he told us that the last scan showed 'a slight decrease' in the size of what's left of my tumour. This is obviously better than an increase, so it appears we have it under control for the moment.
Because of the type of tumour that it is, it can never all be removed - I can never be cured. When asked whether it could grow back we were told it could, but it is not possible to predict what would happen. The longest anyone has survived a glioblastoma multiforme grade 4 in our oncologist's direct experience is 8 years. It goes without saying that I hope I can beat that.
The doctor thinks I can apply to the DVLA to have my driving licence back. I'm not celebrating until I'm holding it in my sticky mitt.
Our next appointment is for three months' time after which I will have another MRI scan.
Because of the type of tumour that it is, it can never all be removed - I can never be cured. When asked whether it could grow back we were told it could, but it is not possible to predict what would happen. The longest anyone has survived a glioblastoma multiforme grade 4 in our oncologist's direct experience is 8 years. It goes without saying that I hope I can beat that.
The doctor thinks I can apply to the DVLA to have my driving licence back. I'm not celebrating until I'm holding it in my sticky mitt.
Our next appointment is for three months' time after which I will have another MRI scan.
12 April - Decisions, decisions
Today we had an appointment to see the surgeon about my gall bladder operation. Actually, we saw his assistant. We arrived half an hour early for the appointment but ended up being late as the disinterested receptionist didn't bother to tell us where to wait. We waited in the hospital reception area which I thought was a bit odd. It turned out to be the wrong place.
Eventually a nurse found us. We saw the surgeon's assistant who told us that the MRI scan showed no gallstones blocking my bile duct. This was not too much of a surprise as I had felt okay on the day of the scan. It was therefore up to me whether to have the gall bladder removed or not. Given that I had experienced several recurrences of gallstone pain I opted to have it out. So I am now on the waiting list. The doctor couldn't tell us how long that would be, but I could change my mind about having the op at any time up to the day of the appointment.
But there is a complication. One of my scans to look at my gall bladder had revealed a cyst on a kidney. So I have an appointment to see another specialist at the end of May about that. (Perhaps I should worry about that as my brain tumour started off as a possible cyst.) It was suggested that we should wait until after the other consultation because it would be possible to see to both things at the same time which would avoid the need to be anesthetised twice. So I can forget about operations until after my 60th birthday, which is a bit of a relief.
My next hospital appointment is the rearranged meeting with the oncologist to discuss the plan for monitoring my brain tumour and whether I can apply to have my driving licence back.
Eventually a nurse found us. We saw the surgeon's assistant who told us that the MRI scan showed no gallstones blocking my bile duct. This was not too much of a surprise as I had felt okay on the day of the scan. It was therefore up to me whether to have the gall bladder removed or not. Given that I had experienced several recurrences of gallstone pain I opted to have it out. So I am now on the waiting list. The doctor couldn't tell us how long that would be, but I could change my mind about having the op at any time up to the day of the appointment.
But there is a complication. One of my scans to look at my gall bladder had revealed a cyst on a kidney. So I have an appointment to see another specialist at the end of May about that. (Perhaps I should worry about that as my brain tumour started off as a possible cyst.) It was suggested that we should wait until after the other consultation because it would be possible to see to both things at the same time which would avoid the need to be anesthetised twice. So I can forget about operations until after my 60th birthday, which is a bit of a relief.
My next hospital appointment is the rearranged meeting with the oncologist to discuss the plan for monitoring my brain tumour and whether I can apply to have my driving licence back.
7 April - a day trip to Blackpool
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.
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.
6 February - A satisfactory result
It has been a month since my MRI scan, 30 days since my last post. We have tried to be patient and wait for the result. In the end it took a couple of phone calls before a doctor called us. He told me my scan was "satisfactory." I think I have heard that before.
The doctor understood that I wanted to discuss the result face to face and to ask about issues such as whether I can apply for the restoration of my driving licence. The consultant will arrange an appointment for us. I've heard that before, too.
After news about the tumour the question of whether I can drive is the other big issue for me. Only once I have my wheels back can I get on with life to the fullest extent. While I am stuck at home (apart from the occasional walk) I still feel like an invalid.
There is another urgency to my getting my driving licence back. If I can start driving by June (two years after my diagnosis) I can keep my no claims discount which was something like 70%, the result of 40 years of accident-free driving. That would make a difference of several hundred pounds to my insurance costs. So the longer I go without permission to drive, the greater my frustration.
The doctor understood that I wanted to discuss the result face to face and to ask about issues such as whether I can apply for the restoration of my driving licence. The consultant will arrange an appointment for us. I've heard that before, too.
After news about the tumour the question of whether I can drive is the other big issue for me. Only once I have my wheels back can I get on with life to the fullest extent. While I am stuck at home (apart from the occasional walk) I still feel like an invalid.
There is another urgency to my getting my driving licence back. If I can start driving by June (two years after my diagnosis) I can keep my no claims discount which was something like 70%, the result of 40 years of accident-free driving. That would make a difference of several hundred pounds to my insurance costs. So the longer I go without permission to drive, the greater my frustration.
7 January - MRI Scan
To Carlisle Infirmary this morning for an MRI head scan. Nothing much to add to that. I expect we will receive an appointment to discuss the results in a few days' time.
So the next few days promise to be an anxious time. Will the tumour have shrunk? Has it grown? Or just stayed the same at it was at the last scan more than 6 months ago? The answer to those questions will determine the direction my life will take. I dare not hope for the result I want for fear of being hugely disappointed.
Stay tuned for the next thrilling instalment!
So the next few days promise to be an anxious time. Will the tumour have shrunk? Has it grown? Or just stayed the same at it was at the last scan more than 6 months ago? The answer to those questions will determine the direction my life will take. I dare not hope for the result I want for fear of being hugely disappointed.
Stay tuned for the next thrilling instalment!
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