31 December - Happy New Year

This is my 100th post to this blog. I wish all my readers a happy and above all healthy New Year!

26 December - So that was Christmas

I hope that you all had a very good Christmas.

Christmas here unfortunately did not go quite according to plan. A couple of days previously I had a severe pain from the region just below the middle of my back and I could not find any position where I couldn't feel it. It did eventually ease off though.

On Christmas Eve the pain returned. In the morning I felt nauseous and vomited a few times. We were concerned enough to call the doctors' surgery for advice, and they were concerned enough for a doctor to come out and take a look at me to see if I should be admitted to hospital as an emergency. By then the pain had eased again and I was no longer feeling sick, so I didn't have to go to hospital, but I have to have a blood test on Thursday, the first working day after the Christmas break.

I haven't felt much like Christmas fare, so I have been existing on easily digested foods like porridge for breakfast and mashed potato with bouillion for dinner. Hopefully I'll get back to eating normally again soon.

3 December - Getting back to normal

Today marks a milestone in my recovery as Olga and I returned from a long weekend in Manchester. It was the first time I had been away since discovering I have a brain tumour.

I felt fine and managed quite a lot of walking - without my stick. I had one nasty moment though when I was ascending the steps between the rows of seats in the RNCM concert hall. There was no stair rail and the seat backs were too low to use for support and I had a sudden attack of vertigo and thought I was going to fall over. Olga quickly realised what was happening and grabbed my arm for support. Thereafter I ensured that I clung to the rail when negotiating stairs - though I'm sure there are places where that just isn't possible.

Apart from that little incident I was fine. It was good to do once again the kind of thing we did in normal life.

15 November - Hospital appointment

Two posts in a week! What's going on?

I had an appointment at the Radiotherapy and Oncology department at Carlisle Infirmary today. It was a brief consultation just to check on how I am.

The good news is that I will have a new MRI scan in two months time. Then we will go up to Carlisle again to get the results. Something to look forward to in the new year! Really. I really would like to know what this tumour is doing.

I asked if I could reapply for my driving licence yet. The doctor said I would have to wait until after the scan, as there is not enough information to go on at the moment. That would really be something if I could get my licence back early next year!

While we were waiting for our transport back home one of the nurses approached me and asked if I would mind taking part in a research project they are working on to try to find out if there is a gene that is associated with cancer or particular types of cancer. Of course I agreed. I owe such a lot to the doctors, nurses and especially the cancer researchers who are advancing our knowledge of this disease that I am glad to help in any way I can.

13 November - Gallstones

No news is good news. For the last couple of months life has been getting back to normal - or at least as near normal as it is possible to be without having a car. Sorry to harp on about this but if you have never been forced to live without a car - assuming you don't live in a city where there is public transport - then you cannot know just how limiting it is, and I hope you never have to.

I learned this morning that I have gallstones. A blood test had shown a raised level that indicated a possible liver problem. I went for an ultrasound scan last week and the GP got the results this morning. My liver is fine but the scan showed the gallstones. Apparently the best course of action is to do nothing and hope that they don't cause any problems because treatment involves quite a big operation.

I have an appointment to see the oncologist in a couple of days' time. I'm not expecting to learn anything new  as I haven't had any tests. Olga and I are hoping that I will get an appointment for an MRI scan as we would like to know what the tumour is doing.

20 September - Doctor appointment

An appointment with our GP today. For the last few weeks I have been bothered by a fungal infection causing patches of dry, itchy, scabby skin around both my ankles. It is probably the result of my immune system being weakened. I saw the doc a couple of weeks ago and she prescribed a steroid-based ointment which had no effect at all. Now I have been given a different ointment to try which I hope will be more effective.

The GP asked how my walking was coming on. I told her that I was fine walking on level ground with my eyes focused straight ahead but that I still tended to lose my balance if I turned my head, for example to look over my shoulder or down at my feet if I had to negotiate uneven ground or dodge around pets or small children.

The doc got me to close my eyes, extend one arm and try to touch the tip of my nose. I did this with both arms and then repeated it. Each time, I missed my nose by a couple of inches. The doc said that she is not a neurologist but she thinks that the part of my brain that deals with balance has been damaged and so I am keeping my balance using my vision mainly. She doesn't think that the lost ability will come back - my brain is just learning a new way of dealing with it.

One day I will have to see if I can still ride my bike. I have ridden it down the road and back one time since my brain surgery - but that was probably before I started the radiotherapy.

6 September - Less than 89 kilos

Another four weeks with nothing much to report. I'm feeling pretty well. People who see me in person or who saw the picture taken on our 10th wedding anniversary tell me I look very healthy. So I must be.

My weight this morning was 89.2kg. It has gone below 90kg and stayed below 90kg for the last 4 or 5 days. So I'm almost down to the weight I was before I went into hospital and have achieved my goal of getting down to 89 kilos.

I feel perfectly normal when I'm at home doing nothing much. It's only when I try to do something more physically or intellectually challenging that what I believe to be the long-term effects of the radiotherapy make themselves felt. I now have a very poor short-term memory. And walking further than into town and back or to the park feels like quite hard work.

I have been walking without a stick but still have moments when I feel I am going to fall over. The doctors don't seem to have anything to say about this. Our GP said it might be one of those things that I will just have to live with. One day I will try and see if I can still ride my bike. I did ride it once since my brain surgery - just down to the end of the cul de sac and back. But then I didn't have these giddy spells - though they only happen when I'm standing up.

I feel as if I could drive a car if only I was allowed to. I have written to the DVLA to ask what I have to do to get my driving licence back. I'm still awaiting a reply to that. It's been more than a year now and I have never - touch wood -had any seizures or fits. But the GP said I might have to wait two years before I can get it back.

Now that I'm feeling so much better the inability to drive is making me increasingly frustrated. Olga is still having lessons, but I'm not yet willing to bet on which of us gets our driving licence first!

9 August - Feeling better

Has it really been more than a month since I last posted here? I know I said that "no news is good news" but several followers commented that they would like to continue receiving news about how I am getting on. So here's an update.

Today we made the return trip to Carlisle to keep an appointment with the oncologist. We learned nothing new. He asked how I was, I told him I was feeling fine considering, so we received a new appointment to see him in three months' time.

In truth, I'm feeling better than I have at any time since the treatment of my brain tumour began. In fact there are times when I completely forget that I'm ill at all, never mind have a terminal illness.

I'm not back to my original fitness though. I tire more easily than I did before and I don't think I could climb much of a hill, though I'm starting to venture further afield. I still get bouts of vertigo that make me sometimes nearly lose my balance when I am walking, and cause me to use both hands on both rails when coming down the stairs.

I have lost most of the excess weight I had gained whilst I was on steroids: I'm down to 91kg now and I had been over 100kg. That makes me feel better too. I still have the goal of getting down to 89 kilos which was what I was BT (before tumour.)

The one thing that disappointed us is that I was not given a date for a new MRI scan. The doctor said that as I'm not having headaches, vomiting or seizures and am feeling fine there is no reason to have a scan. But I'd prefer it if we could keep an eye on things. A glioblastoma multiforme grade 4 is considered incurable. So I believe that there is still some tumour left and expect that one day it will grow back again. I'd rather find out when this happens before I start experiencing headaches, fits and vomiting.

I don't really want to live with a time bomb in my head and have no idea what the fuse is set for.

7 July - Losing weight

I think this blog is reaching the point at which no news should be assumed to mean good news. The treatment to hold back my incurable brain tumour has been completed and we are now in "wait and see" mode. I think we would all get bored of daily or weekly updates just to say "hello, I'm still here."

My weight, which has caused me some consternation as it topped 100kg, is now down to 94.4kg and decreasing at a rate of a couple of hundred grams a day (sorry, I gave up pounds and stones several years ago.) To what extent this is due to the diuretic tablets proscribed by our GP, or giving up cakes and desserts I don't know. but while it continues to work I'm sticking at it. Moving around is now a lot more comfortable and I can once again see the bones in my feet.

I still have to overcome one problem which has plagued me ever since the treatment started and that is my loss of balance and the vertiginous feeling when I have to descend stairs. Our GP warned that there may not be anything that can be done about that. I hope it will just wear off. Until it does I won't feel confident enough to leave behind my walking stick or go out without Olga's reassuring presence.

Olga and I have been discussing what improvements we can make to our home to make things easier for me when my mobility becomes limited (as it almost certainly will judging by the experiences of other brain tumour victims.) We had a meeting with a lady from Social Services who told us they can fit a rail on the opposite side of the stairs of the stairs so I can descend hanging on with both hands, which will help with my vertigo. They also offer such things as raised toilet seats to make it easier to get off the pot, and can loan us a lift to help getting in and out of the bath. That would prevent potentially embarrassing incidents such as occurred a month ago when I couldn't get out of the bath.

That's all for now and hopefully for a while or at least until I experience major improvements in my fitness.

26 June - One year on

Another milestone passed. This is the day the doctors said I would never see. One year ago today a doctor broke the news that I had a brain tumour, that it was incurable, and that I could expect to survive "a few months to a year."

Today we went to Newcastle, to the Royal Victoria Infirmary where I had the brain surgery, and saw the same doctor, one year later. As I anticipated, we didn't learn anything new. It was a rubber stamp exercise to put "closed" on my case as far as the surgery goes. (Carlisle will continue monitoring the tumour, of course.) It was uplifting to see the looks of genuine surprise as the doctor read through my file and saw the reports of how well I have done.

So, five hours of travelling for a five minute consultation. But I'm not going to grumble. They did a good job.If they hadn't, I really might not be here at this moment.

20 June - Cold turkey

Finished the course of medication for the shingles. I haven't noticed any reduction of the rash but there don't appear to be any new blisters. Fingers crossed.

In the meantime Olga has been doing some research into why I have been feeling so lousy since giving up the steroids. She found that after effects of coming off dexamethazone  - such as stiff and aching joints and muscles, loss of appetite, weight gain and tiredness - are a common complaint on cancer forums. Some people have been unable to give up the drug at all.

The best way to give up dexamethasone seems to be to decrement the dose by microscopic amounts such as a quarter of a tablet every few days so that the body doesn't notice. We were told by my oncologist to reduce the dose from 2mg to 1/2mg in just a few weeks which appears to be just  too fast, so I've been suffering from "cold turkey" withdrawal symptoms.

We have just managed to get my weight down below 100 kilos. By sticking rigidly to a small helpings, no snacks, no cakes or desserts rule it seems to be going down by an average 100g a day. If I can keep this up then hopefully I'll eventually start to notice a difference.

12 June - Shingles!

If it isn't one thing it's another. Just when I was hoping to feel better after the cancer treatment I get shingles.

A couple of days ago Olga noticed a rash on my body. I didn't notice or feel anything so we didn't do anything about it. Last night it was worse and Olga applied some Spilanthes to the affected areas. This morning the rash wasn't any better. Olga consulted Dr. Google and told me that I probably had a type of herpes commonly known as shingles.

Olga managed to get me an appointment with a GP straight away, which was more than I could achieve (I play John le Mesurier to Olga's Hattie Jacques.) The GP confirmed our diagnosis, issued us with a prescription for some antiviral tablets.

Apparently, shingles is related to chicken pox and people who have not had chicken pox could catch the virus from me. So I have been warned to stay away from pregnant mothers, babies and small children, something that will cause me no pain at all. Shingles can also cause aching muscles and a general feeling of tiredness, which explains a lot about how I've been feeling lately. The virus is dormant in the body and probably appeared because my immune system had been compromised by the chemotherapy.

8 June - Twitching

Something I've been meaning to write about for a few weeks but kept forgetting. I've started twitching. No, I haven't become an obsessive birdwatcher. But my legs and arms have begun twitching or jerking occasionally while I'm relaxing in a chair or laying in bed waiting for sleep.

I first became aware of this a few weeks ago. One or both legs and arms, or more occasionally all four of them would twitch for no apparent reason. Often it would be a barely perceptible twitch. But sometimes it would be a jerk which would be noticeable if anyone was looking. To start with it only occurred when I was snoozing or relaxing. But just recently it has started occurring when I was carrying out some task. For example. this morning I was using the computer and my right hand jerked and released the mouse, sending it flying across the desktop.

Olga has been reading the small print in the clomipramine pack and found that "involuntary muscle movements" are a common side effect of the drug. But I have been taking clomipramine for its cancer-fighting properties ever since my treatment started, so why has this only recently begun occurring? Just a guess, but perhaps the steroids masked this side effect and it is only becoming noticeable now the dose of those has reduced to nothing?

I would be interested to know whether anyone else who has taken clomipramine has experienced involuntary muscle movements and if they have, was there anything they could do about it?

7 June - Aches and pains

I have been off the steroids (dexamethosone) for over a fortnight now. I would have hoped to be able to report that I was starting to feel more normal but that isn't the case yet. My weight is still hovering somewhere over the 100kg mark. I have a painful left shoulder that gives me hell if I try to raise my left arm too much, though this may be just a sprain and nothing to do with anything else. And I have got aches and pains in my knees and hips which often make it more than I can manage to get out of a low chair without assistance. That probably isn't everything that's bugging me at the moment, but it's enough.

Olga thinks a lot of these symptoms are cold turkey (withdrawal symptoms) from coming off the dexamethasone. She has done a lot of research on the internet and thinks that I should have taken longer and made much smaller steps coming down from the 4mg I had been on for months. But we did what we were told, or tried to.

I hope we will see some improvements soon. It would make an enormous difference to my morale to be able to walk reasonable distances (at least a couple of miles) again.

2 June - Taking a bath!

Today I decided for the first time in several months that I would have a bath instead of a shower. Showers are all very well but with my lack of agility and problems with balance I don't find it very easy standing on one leg to wash the other foot. I really need a shower I can sit down in and ours isn't big enough.

I ran a bath with no problems and managed to get in. But when I crouched down and tried to get into the sitting position my left foot slipped and I fell back into the bath. Miraculously I didn't create a tsunami and flood the floor below with bathwater, but this didn't augur well for getting out again. Well, I'd worry about that when the time came.

Sure enough when I tried to get from the sitting position to a crouch with both feet under me I couldn't. I didn't have enough strength in my steroid-weakened arms to lift my overweight body. I sat back in the bath while I pondered on what to do.

Fortunately it wasn't long before Olga came up the stairs. She gave me a stern ticking-off for having a bath without telling her. After a couple of abortive attempts to get out Olga suggested going and asking one of the neighbours for help. I had momentarily considered calling the fire brigade! But I think I would have rather lived for the rest of my life in the bath than incur the embarassment!

Olga's engineer's brain went to work and she rolled a bath towel into a thick "rope", wound it round my chest under my shoulders, then pulled on that while I pushed down with my arms. That got me to the crouching position from where I was able to stand up and climb out. Phew!

We had a good laugh about it afterwards, but this episode has made me think that it will be difficult to cope in this house unless my strength and mobility improve. I am determined not to end up in a wheelchair but I may not have any say in the matter. Read the stories of other people with brain tumours in cancer forums and they all seem to end up wheelchair-bound eventually.

25 May - Water retention

100.8kg! My weight has reached its highest yet, despite trying to eat smaller portions and giving up biscuits and desserts. I don't know if there is a connection but my knees have started giving a sharp twinge when I try to get out of my chair.

I was grateful for my walking stick as I hauled myself out of the taxi to get to the doctors' surgery this morning. We were there to discuss the problems I have been experiencing in trying to give up the dexamethasone steroids. I have taken none for 4 days in a row now, and this is my third attempt.

The doctor explained - if I understood correctly - that steroids can mask symptoms of things that I have picked up due to the depressed state of my immune system caused by the chemotherapy. On stopping the steroids these other symptoms such as a couple of abscesses start coming to the fore.

A lot of my extra weight appears to be water retention. My feet and legs definitely look plumper, as does my stomach.

We came away with prescriptions for diuretics and also for the extra clomipramine mentioned by someone who commented to a post I made in the Macmillan support forum. I can now increase the dose of clomipramine to the 200mg daily now being advised by Prof. Pilkington.

Our GP is going to check my blood levels so I had to get four blood samples taken. It took two nurses and a doctor half an hour to get just about enough blood for the tests. Now I know what a pincushion feels like! It's always such a struggle getting any blood out of me that I'm thinking of changing my surname to Stone!

20 May - 100 kilos

I weighed myself on the bathroom scales this morning, as I do every morning, and the scales read 100.2kg. I have broken the 100kg barrier for the first time, though this was not a goal I was aiming at. Overall I am starting to feel better by very small increments. But I'm sure I'd feel even better if I could shed some of this excess weight. I'm down to a small fraction of a steroid tablet per day now and tomorrow we are going to try again to stop the steroids altogether.

Olga thinks a lot of the weight gain is water retention and I'm not going to disagree with her. My feet look bloated and my shoes feel unusually tight. We did try a course of diuretics prescribed by the GP, with no effect. Today we are going to try Spilanthes to see if that helps.

14 May - My 59th birthday

Another milestone in my life - my 59th birthday. Ten months ago in the hospital in Newcastle when I was told what I had I wondered whether I would see it. Well I'm still here, still beating the bugger and now have my sights set on reaching 60!

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.

10 May - Good news

Another appointment with the oncologist at Carlisle Infirmary to check on my progress and find out the results of my last MRI scan. The good news is that the tumour hasn't grown. The bad news is that it hasn't shrunk, either. The scan showed no change over the one made on 5 January. I had really been hoping for something a bit more positive to show for the weeks of tiredness caused by the chemotherapy, something extra to show some gain from our decision to take clomipramine in addition to the "standard" treatment. So to tell the truth I was a little disappointed. It seems the surgery and radiotherapy did most of the work in reducing the tumour from the size it was originally.

My next appointment with the consultant will be in three months' time but I won't have another MRI scan for six months unless I experience brain tumour symptoms in the meantime. We were a bit disappointed about that, too, as it smacks of a decision made on budgetary rather than clinical grounds. I've read quite a lot about these glioblastoma multiforme tumours. They can lie dormant for weeks, months or even years and then suddenly begin growing aggressively. I'd rather someone kept an eye on it a bit more frequently. I don't know if it is possible to find somewhere I could have an MRI scan privately. Olga finds our NHS rather "hands-off" compared to hospitals in the former Soviet Union.

The consultant, Olga and I discussed the issues I have had since the completion of treatment and I came away with some diuretic tablets to stop the water retention that may be accounting for a lot of my recent weight gain. Most people put on weight when they start taking the steroids; perversely I have really only started piling on the pounds after we began reducing the dosage.

We are also going to make another attempt to stop the steroids entirely: So far we have got down to 0.5mg or a quarter of a tablet which is about the size of a breadcrumb, but the last time we tried to stop completely I got a mild headache. Let's hope this time we are more successful.

3 May 99.9 kg

100kg! Well, to be strictly accurate 99.9kg. That's what the bathroom scales told me my weight was today. I could hardly eat any less and maintain a healthy diet. I'm eating the same things as normal. But my weight seems to be increasing uncontrollably ever since we started reducing the dosage of dexamethasone.

It's rather worrying. I was about 87kg when I came out of hospital. Since then my weight has slowly increased, which everyone has put down to the steroids. I actually hoped that I could start to lose a little weight after reducing the dosage. I thought I would feel a bit more energetic if I didn't have to carry what amounts to a loaded rucksack around with me.

The weight gain is also rather inconvenient, as I can't get into any of my trousers! Before all this started I was a size 40 that could still get into my older size 38 trousers. But now my waistline is a size 46! Most of this increase has occurred over the last few weeks. What can we do to stop it? Our GP didn't have any useful suggestions.

27 April - The doctor calls

Well that wasn't too successful. It seems that going from 1mg of dexamethasone (half a tablet) to nothing was too big a step for my body. I awoke with a mild headache and terrible balance problems. Olga took my blood pressure using our Omron blood pressure monitor and it was quite low, which is unusual for me.

Olga thought we should speak to a doctor but when we phoned the GP surgery we could not get an appointment until next Tuesday. We could go to the surgery at 5.30pm and wait to be seen as an emergency (!). Then I remembered the nurses at the radiotherapy and oncology department in Carlisle had given us a number we could call for advice if needed. Eventually we were phoned back by the consultant who advised us to increase the steroid dose to 0.5mg (a quarter of a tablet). But we were still advised to see a doctor.

About an hour later the phone rang. It was the GP surgery. Carlisle had been on the phone to them and a doctor was going to come out and visit us. Any of my readers familiar with the NHS will know that winning the lottery is easier than getting GPs to make house calls. The doctor's verdict was that the patient was OK but reducing the dosage of steroids can be tricky. We would carry on taking a quarter of a tablet a day and make an appointment at the surgery next week for a blood test.

Because the piece of dexamethasone tablet seemed so small I thought I could still give up the lansoprazole capsules which protect my stomach from the steroid. That was a mistake. I felt that quarter tablet on its entire journey through my system! So it looks like I'll have to carry on taking lansoprazole and dexamethasone for the time being.

26 April - Off the steroids

Fingers crossed that there are no ill-effects: Today I have come off the dexomethasone (steroids.) As a consequence of that I have also stopped taking the lansoprazole. The lansoprazole is meant to protect my stomach from the dexomethasone, but lanzoprazole itself has undesirable side effects when taken for a long period including liver damage and diarrhea so I will be glad if I can give it up. If all goes well then from now on, clomipramine will be the only drug I am taking specifically for the brain tumour.

I'm still suffering from excessive looseness of the bowels. It is not particularly bad, just annoying. If it doesn't clear up soon with this reduced medication I guess I'll have to see the doctor. Diarrhea seems to be a common after effect of chemotherapy so there may not be much the doctor can do about it.

I'm more concerned about the breathlessness and spinning head I experience after climbing the stairs. I'm even less steady on my feet than usual and have almost fallen over a couple of times.

My weight this morning was 97.8kg, the highest it's ever been and my legs feel like I'm wearing concrete shoes. It's hardly possible to eat less without going on a starvation diet, which isn't recommended as I need strength and energy for my recovery. Hopefully stopping the steroids will help with the weight gain.  I really hope that with the end of treatment my fitness will start getting back to normal.

24 April - MRI scan

A trip to Carlisle for my brain to have its picture taken. Nothing to report. I think we will have to wait until our next appointment with the oncologist for the results. So we'll be on tenterhooks with crossed fingers for more than a fortnight. The doctor told us that MRI scans have to be discussed with doctors in Newcastle first.

I still have diarrhea, though Imodium seems to help. I'm feeling extra light-headed and dizzy and have no energy for just about any activity at the moment. I think that last cycle of chemo just about finished me off.

17 April - Still got diarrhea

Received the appointment for my next MRI scan at Carlisle in a week's time. Unfortunately it's at 9am which is impossible to manage from Cockermouth without our own transport. Even by taxi it would be impossible as the local taxi firms are doing school runs at that time in the morning.

I'm not noticing much improvement in my energy level since I stopped the chemotherapy and I have had diarrhea for the last few weeks. I understand it's not unusual to have diarrhea after chemo because the chemo kills fast-multiplying cells which include the bacteria in the gut. It's supposed to clear up on its own. But I have decided reluctantly to take Imodium in the hope that will put a stop to it.

10 April - A setback

Bit of a setback to my hopes of coming off the steroids. We had got down to 1mg (half a tablet) but I had a headache last night which persisted until morning. It went after I took one dexamethasone (2mg) after breakfast. So it looks as if I'll need to keep taking them for the time being.

8 April - No improvement

I've been off the chemo for more than a week now, but because of the way it builds up in the body and the cumulative effects I'm not starting to feel any better. In fact I feel weaker and more tired than at any time since I came out of hospital after the brain op last summer. Yesterday I managed to walk down into the town and back with Olga but I had to stop and sit down on a bench at a couple of points along the way.

Next weekend is the NARSA show at Blackpool. I had really been hoping to go. But unless I make a dramatic improvement in the next few days I don't think I'm up to it yet.

3 April - Weight gain

Had a shock when I stood on the bathroom scales this morning. My weight was more than 96 kilos! That's the heaviest I've even been. No wonder walking seems such an effort these days.

Before I started the cancer treatment my weight was around 88 kilos. Even that was a couple of kilos more than I'd really like it to be. But it has slowly increased over the ensuing months. "It's the steroids" says everyone, offering the hope that my weight (and other treatment side effects) will eventually get back to normal once the treatment is over. My oncologist has already said that we can start reducing the dose and eventually stop the dexamethazone. I'm half way there but success depends on not experiencing any headaches or other symptoms - if I do then I have to go back to 4mg a day.

I became concerned about my weight after looking at my feet and noticing that they were puffy and my ankles were swollen. Olga examined them and concluded that it is water retention. I did some Googling and "swollen ankles after chemotherapy" appeared to be a not uncommon search term. The consensus seemed to be that it is not something to worry too much about and that it will eventually clear up of its own accord. But one woman's oncologist had prescribed a diuretic. I wasn't keen on another trip to the doctor's surgery nor on taking yet another tablet so we have decided to try spilanthes - a herbal remedy that has diuretic properties which Olga already has in her medicine cabinet. We'll see how that goes.

26 March - Feeling dizzy

This last session of chemo has knocked me for six a bit. Until then I would feel a little dizzy if I climbed the stairs a bit too quickly. But at the moment even getting up from a chair makes my head spin as if I am about to faint.

According to "Living with a Brain Tumour" chemotherapy affects the bone marrow causing low counts of red cells in the blood. From school biology lessons I seem to recall that those are the cells that carry oxygen round the body. So I think the dizziness is due to the brain not receiving as much oxygen as it would like. In other words it is to be expected and I will just have to take it easier for a while.

It would be nice to know how long it takes the blood to recover once the chemotherapy is over, though, and whether there is anything I can do to speed the recovery process up a bit.

23 March - Hospital appointment

Afternoon appointment with the oncologist in Carlisle. Nothing new to report. No new symptoms means everything is going OK. Had a blood test and collected the prescription for the sixth and final chemotherapy cycle which I start on Saturday.

Next appointment with the doc will be in two months time, before which I should have received an appointment for an MRI scan. Then the doctors will be able to actually see how well the treatment has gone.

Olga asked if I was to continue taking the steroids (dexamethazone) after the chemo was finished. So the doctor has given me a programme to step down the steroids from the current 4mg a day to zero over the next 4 weeks. If I don't feel ill or have headaches then I could be free of medication by this time next month, but if any symptoms appear I will go back to 4mg. So fingers crossed...

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.

JM at the head of Crummock Water
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.

14 March - Dichloroacetate

Still soldiering on. A reader from the USA wrote to direct me to an article about using the orphan generic drug dichloroacetate (DCA) as a treatment for glioblastoma. As with clomipramine, this seems to be another case of a drug originally developed to treat other conditions turning out to have potential uses against brain cancer. It isn't something I'd want to try now, never mind on my own initiative - the article suggests that this could be dangerous. But it is certainly something worth knowing about.

It is interesting that the clinical trials which took place in Canada were funded by public institutions. Here in the UK it appears that trials into the use of inexpensive generic drugs like clomipramine or dichloroacetate are never likely to take place as there is no money to be made from them by the drugs companies. Why doesn't our NHS fund research like this? It would probably cost a fraction of the money that has been squandered on IT systems as well as opening the door to lower cost treatments. As so often in this country, there is an unhealthy relationship between our politicians, public services and big business.

3 March - Novocure

One of my readers wrote to me last night to say "do a web search on novocure." I did. It appears to be a new cancer treatment currently undergoing clinical trials in the USA and Europe which is relevant to the treatment of brain tumours as well as other types of cancer.

There are no clinical trials of novocure currently taking place in the UK, however. Furthermore it appears I would fail the inclusion criteria shown on the website. My glioblastoma is neither newly diagnosed nor recurrent and has received other treatment (intensive temozolomide and clomipramine) since diagnosis.

To be honest I would not sign up for a clinical trial even if I did qualify. I have accepted my situation, whatever that turns out to be. At the same time I don't think my life expectancy will be as short as the prognosis I was given last summer. I believe we are beating the bugger at the moment.

I hate being in hospital. I would rather receive the treatment I am currently getting as an outpatient and see out my days in the comfort of my own home than spend much of the time left to me travelling to and from distant hospitals or having to undergo further operations (as I believe would be necessary for novocure which must be physically delivered to the tumour.) I am also given to believe that participants in clinical trials may receive a placebo instead of the drug. I'd rather know that I am receiving treatment.

But it's good to know what options are available. I'm writing this blog not just for myself but for others who learn that they or a friend or relative has a brain tumour and I appreciate all relevant comments.

28 February - The end of chemotherapy!

Today I took the fifth and final 400mg dose of Temozolomide for my fifth and penultimate chemotherapy cycle. At this point in the cycle the concentration of Temo in my body is probably at its highest, with a corresponding negative effect on my energy levels. Today I could hardly haul myself out of my chair. I have spent most of the day sitting and thinking about what I could be doing if only I could find the energy to actually do something.

It would probably be a good idea to wait until I am feeling a bit more lively before doing anything critical. Yesterday I started to work out a circuit layout for stripboard and I drew the microprocessor chip so the rows of pins ran along the copper strips, connecting them all together, instead of at right angles. I threw away the drawing, printed out a new blank template and then proceeded to do the same thing again!

Duh! Sometimes I feel as if I've had a lobotomy.

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.

15 February - Rubber legs

Nothing in how I feel has changed since 4 February, hence no posts. For the record, I'm not experiencing the kind of debilitating dehydrating diarrhoea you get with a stomach upset. Just that things are not back to normal in that area. It's something to mention to the doctor when I next see him at the end of next week.

I'm still walking on rubber legs, too, which seems to be a universal complaint of everyone who has had radiotherapy to the brain. It's a bit worrying. My positive outlook has largely been based on the belief that my present condition is only temporary and that once the treatment is over things can only get better. Olga and I hoped to be able to get away for some trips abroad once my immune system recovers from the chemotherapy but I'd need to be fitter than I feel right now to manage it. When one reads of people whose mobility after radiotherapy slowly deteriorates until they are forced to use a wheelchair it's a bit disheartening.

4 February - Diarrhea

If it's not one thing it's another. A week ago I was concerned about getting constipation. Now it's the opposite. Olga thinks the chemo has killed the good bacteria in my gut. I'm eating a lot of home made live yogurt to try to replenish them.

No snow here so I'm still able to get out and about. I do wish my legs didn't feel quite so wobbly though. Olga and I walked into town today to visit the farmer's market and get a few things from Sainsbury's. I felt I needed to sit down in Sainsbury's while Olga went round the shop. I hope my fitness level will improve after the chemo is over.

30 January - Prunes and laxatives

I'm sure you are all happy to know that I survived the start of my fourth chemotherapy cycle without suffering chronic constipation. :) This time we were prepared. Besides my usual prunes for breakfast we stepped up the laxative tablets to three a day, plus a dish of beetroot before lunch and dinner. We also had more liquid meals such as borscht or stew. I don't think I can look at another beetroot - not for another 4 weeks anyway. As suggested by the doctor, I also took only one anti-sickness tablet per day instead of two.

The chemo still makes me more than usually lethargic (or just plain lazy) but it was a fine day so this afternoon I hauled ass and Olga and I walked to Harris Park and back - the best part of a couple of miles. This seems to be about my limit these days, and I'm still very sweaty by the end of it.

The higher mountains of the Lake District were iced white with snow. Looking across at them I felt rather sad: I doubt if I will ever regain enough fitness to walk the fells again.

I don't understand why I feel so physically weak when it was only my brain that has had surgery, but I believe it may be down to the dexomethasone, a cortico-steroid, which I take to control inflammation of the brain that might otherwise cause headaches or seizures. These steroids are completely different from the kind taken by body-builders and cause muscle wastage (and many other harmful effects, if you read the packet.) So I have lost fitness built up over many years that will probably take years to regain, if ever.

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.

20 January - A let down

Today we were supposed to go to Carlisle for an appointment with the consultant oncologist, also to have a blood count and pick up the temazolomide tablets for my fourth chemotherapy cycle due to start on Monday. We were also, of course, expecting to get the results of the MRI scan that I had a couple of weeks earlier. Although I don't think I have anything to worry about I was still a little bit anxious as some other brain tumour sufferers have learned what they didn't want to hear when the results came back.

Olga phoned the hospital yesterday to confirm that transport had been arranged and was told we should expect a car from 12:30 for our 14:15 appointment. 12:30 came and went. As did 13:30, the point at which making the appointment on time by any means was no longer possible. It's doubtful we could even have arranged a taxi at such short notice because at that time of day the local taxi firms are on pre-booked school runs.

Olga spoke to the consultant's secretary who checked and told us that the transport had not been booked. This despite the transport box on my appointment card being ticked. Clearly the administrative clerk failed to tick the box on the sheet from which the transport arrangements are made up and the person Olga spoke to yesterday didn't even bother to check. Olga was asked to check in future that the request for transport was recorded. So as well as going for treatment we are apparently supposed to supervise the NHS admin staff.

This is the first time we have been let down by the hospital transport service and to be clear it is not the fault of the volunteer drivers, who often complain about being sent to pick up people whose clinics have been cancelled and other administrative failures. It is frustrating when you live in a place with next to no public transport having to depend on other people to get to and from hospital appointments and always being on tenterhooks over whether the car will come or not.

So now I have to wait until Monday morning, the time of my new appointment, to learn the result of my MRI scan, and I will start the new chemo cycle a day late. No big deal, but a lot of frayed nerves and half a day spent for no useful purpose.

15 January - Life goes on

Life goes on. I'm not feeling too bad at the moment. Not as fit or alert as I was before the tumour. But fit and alert enough to get frustrated and annoyed when I want to do something and find it much more difficult or even impossible. Then I have to go and read the stories of some other people who have glioblastoma to remind myself that I've been relatively lucky not to have had worse symptoms of the tumour or side effects of the treatments.

I've added a Useful Links panel to the blog. This is to help new readers find information related to the use of clomipramine to treat brain tumours and one or two other useful web sites.

5 January - MRI scan

I've had my MRI scan. Nothing very interesting to say about it. I just had to lie still on a table while the radiographers operated the machine.

I don't expect to be told the results until my next appointment with the oncologist in two weeks' time. In fact, if they contact us early we'll only worry that the scan revealed something that needed more immediate action. So there should be nothing to report for a couple of weeks. No news is good news.

1 January 2012 - Appointment for a scan

I wonder what the New Year will bring?

One surprise, after our recent consultation with the oncologist, was an appointment for an MRI scan of my head, in Carlisle Infirmary next Thursday. At 08:30am! Not quite sure how we are going to get there at that time in the morning, but hopefully the hospital volunteer car service will be able to provide a car for us.

So soon we may know by other means than how I feel, how my treatment is going.