29 July - Feeling much better

Despite getting a lot less sleep than I normally would during the last couple of days I have felt much better. I have felt positive enough to bring back out of the cupboard the hobby radio stuff I'd put away thinking that I probably wouldn't use it again and might as well sell some of it. I can't say that there is any long term plan or joined-up thinking in anything I am doing but my ability to do stuff is definitely getting back to normal.

Physically I'm feeling fitter, too. When we set off for a walk into town this morning I felt I had enough energy to hike up a small fell. True, I might not have managed it had I the opportunity to try. But I'm certainly managing a brisker walking pace now.

Because of silly superstitions I'm not going to make any optimistic statements that might turn into "famous last words." The trouble with having an engineering background is that I am still predisposed to believe what the experts tell me. I find it strange that I am now unfazed by the knowledge that if I am still here in a year's time I probably won't be for much longer.

But whether my mind has dealt with it or whether I don't really believe it because I don't feel that unwell I can't honestly say. If the migraine-like headache returned I might change my tune, which is why I don't want to tempt fate by making any brave claims about being the guy who against all the odds is going to beat Glioblastoma Multiforme Grade 4. So I'll just carry on taking one day at a time, hoping that with a bit of luck and staying as fit as I can I'll survive for longer than many other people with the same condition.

27 July - Exercise bike

Still not sleeping much. Don't know why. The steroids are down to one tablet a day. I'm not anxious or depressed about my situation, not laying awake thinking dark or bitter thoughts. In that respect I seem to be dealing with it better than Olga. I'm just taking each day as it comes and finding things to keep my mind occupied. It's a bit like being on holiday only without the car to go anywhere or the energy to do more strenuous activities.

Yesterday, despite the lack of sleep, I noticed an improvement in my visual and motor functions. I managed to do some quite tricky work with the soldering iron.

Yesterday afternoon we took delivery of an exercise bicycle which this morning we put together. After that I rode a virtual 5km. Hopefully it will not be a five minute wonder like the one I had a few years ago which ended up in a charity shop when I got fed up with falling over it. At least we now have extra space for it - in the garage.

I do have a reason for getting this exercise bike as it will mean I won't have an excuse not to exercise if the weather turns cold and wet which, this being Cumbria in North West England, it is bound to do eventually.

The exercise bike is an interesting example of retail profit margins. We saw it in the Argos catalogue where it was being sold for £199.99, reduced from £299.99. But when Olga went to the Argos website the same model was now being sold for £89.99, previous price £99.99. However Argos would only promise delivery within 21 days and we wanted it now, so I did some searching and eventually got the same machine from an eBay seller of retail returns for £74.95 plus £4.95 shipping by next day courier. Which is about what it is actually worth, to look at it. But it will do the job just fine, I think.

24 July - A 5km walk

Went for a walk of about 5km over the fields to the north of the town on a glorious sunny day. The walk involved some gentle climbing up out of the valley to a point where we could look down over the town and the distant fells.

I couldn't have managed it without the walking stick, both for extra propulsion up the hill and for steadiness. Although I'm walking quite strongly my head still spins a bit and it isn't uncommon for me to almost lose my balance, especially if I turn to look at the view or something in a passing shop window rather than looking straight ahead and concentrating on where I'm going. I'm guessing this is a brain problem not a fitness problem and have no idea whether it will clear up or not.

It is good to feel strength in my legs and to do something not too different from what I would normally have done before the tumour.

21 July - CT scan

Back to Carlisle for the CT scan. This time we went using the hospital car service. It saved us a taxi fare but it was a bit of a palaver to arrange; we had to be ready an hour earlier than if we had booked our own taxi and the service can't usually accommodate spouses or partners who wish to accompany patients to their appointments as the cars are usually full. So I expect we'll be using taxis when I start going for treatment.

At the hospital a nurse inserted a big needle with a plumbing attachment into a vein in my arm so they could inject the contrast dye for the scanner. Then off for a scan using the radiology department's brand new Philips CT scanner, commissioned this week, the wait for which I suspect is one reason why treatment is being a bit slow at getting started.

Back on the bed, head on the neck rest and the mask made on Tuesday was clipped into place. Momentarily a bit unnerving as it held my head more firmly than I remembered, but a few deep breaths and calm thoughts about the good this was going to do relaxed me. The doctor injected the contrast dye into the bloodstream, then I'm moved into the scanner which was very quick.

And that was it. There will be an appointment for a further scan after the doctor has worked out the plan. Until then I have another couple of weeks of "freedom."

20 July - Treatment and prognosis

I finally felt brave enough to do a bit of online research into my brain tumour, which is described as a Glioblastoma Multiforme Grade 4. According to Wikipedia it is the most common and most aggressive type of malignant brain tumour. Despite this, it occurs in only 2 to 3 in every 100,000 people in Europe and North America. So it seems that I, who normally never even wins the club raffle, really hit the jackpot with this one.

The treatment I am receiving - craniotomy to remove as much of the tumour as possible, followed by a combined course of conformal radiotherapy and temozolomide chemotherapy - is the most common and generally regarded as most effective form of treatment. Nevertheless prognosis is poor. In a clinical trial of 575 patients receiving this treatment the median survival rate was 14.6 months. (Without chemotherapy this was reduced to 12 months.)

The most important factor determining the survival period would seem to be how much of the tumour was removed during the craniotomy. A typical tumour contains 10^11 cancerous cells. This is reduced to 10^9 if the surgeons remove 98% of it. Radiotherapy can kill 98% of those, reducing the number to 10^9. But that is still a lot of cells that will eventually multiply, grow the tumour and kill the patient.

There are reasons to be optimistic. Olga saw the surgeon as I came out of the operating theatre. She says he looked pleased, was smiling and said the operation went very well and I would be OK. So perhaps he got more than 98% of the bugger. Time will tell.

Temozolomide is a chemotherapy drug that is used to treat newly diagnosed glioblastoma in patients that are fit enough to look after themselves. It can be taken orally as it has the ability to penetrate the barrier to the brain so that it can reach the cells it is designed to treat. It works by blocking the ability of the cancerous cells to make DNA so they are unable to replicate. It also increases the effectiveness of the radiotherapy.

Although temozolomide has side effects, including nausea and a weakening of the immune system, it is not as bad as some chemotherapy drugs according to some sources. If I can avoid picking up any bugs hopefully it will not be too bad.

The reason it takes a long time to start the actual radiotherapy is apparently that the planning is very time consuming. A lot of precise calculations have to be made in order to target the X-rays on the cancerous cells in the brain while avoiding everything else. The nurse technician yesterday said "the maths can be complicated." I had visions of teams of people slaving over calculators but I presume they use computer modelling.

Given how I feel right now and what I now know about the treatment, I'm hopeful that I can beat that 14.6 months prognosis by a significant margin.

19 July - Man in the mask

To the Radiotherapy Department at Carlisle Infirmary for the first step to the actual treatment. This is the manufacture of the mask or mould that will hold my head in the correct position for the radiotherapy treatment.

I'm impressed by the efficiency. They are ready on the dot of the appointment. The nurse technician takes care to explain all the treatment I will receive as well as what they plan to do during this visit.

For making the mask I lie down on a hard bed and a neck rest is selected to make me comfortable. The mask starts off as something that looks a bit like a thin toilet seat with a cut-out at the front. There are studs round the edge of the "seat" that lock into the bed, and the hole in the middle has a coarse mesh thermoplastic material stretched over it.

The thermoplastic is softened in hot water and then it is placed over my head. The studs go in with a snap and the two nurses work quickly moulding the material to the shape of my head paying particular attention to my nose and ears. It is not an unpleasant sensation, like having a hot towel on your face.

After a few minutes the mould is starting to set and soon after that the job is done. The studs come out and I can sit up and see the finished result.

Then off for a blood test in preparation for a CT scan which will be done on Thursday. This, I am advised, is just part of the preparatory work and not a diagnostic scan so I don't need to worry about receiving more bad news after it.

That's it for today, so we catch a bus into Carlisle city centre for some shopping and lunch.

17 July - Winning the lottery

We won the lottery yesterday. When I saw the email this morning I thought wouldn't it be just my luck to win a million and not have time to spend it! As Olga says, what use is money if you don't have health? But the win was only a tenner. It won't change my life.

After our amble into town this afternoon Olga says I am walking more strongly. People we meet ask how I am and enquire about the treatment. When I tell them I will be travelling five days a week for six weeks to Carlisle and back by taxi there is always a sharp intake of breath, a comment about how expensive that will be and questions about whether an ambulance service can take me.

I stopped thinking about money when the Newcastle hospital registrar gave me a use by date. In any case, I don't consider it anyone's responsibility to get me to the hospital for treatment but my own. If we run up a bill of £3 - 4000 in taxi fares then that is no more than we might have spent having the kitchen re-done or the carpets replaced.

And the treatment itself is free. If this had happened to one of Olga's friends or relatives in Ukraine, they would have to pay the full cost of medicines as well.

So new carpets or cancer treatment? Not one of life's tougher decisions.

14 July - A trip to Keswick

Two months ago it was my fifty-eighth birthday. Today it is as if I have aged at least ten years, walking slowly along with the aid of a stick and getting in peoples' way like the many elderly folk around here that the fit, healthy me used to get impatient with for clogging up the pavement.

We went to Keswick for the day on the bus. It was the first time I had been out of Cockermouth since hospital and I wanted to see that I could still go places, even if not the places I would normally have gone on a day like this. The weather during the last couple of weeks has been gorgeous and I would undoubtedly have spent several days out walking on the fells were it not for this damned brain tumour. The thought that I have missed this opportunity, may not even have the opportunity again, depresses me so I try not to think about it.

In Keswick we bought a cool soft hat to hide my embarrassment when we cut my hair off in a couple of days time in preparation for the radiotherapy. It doesn't have to come off but everyone says that it will fall out in clumps where the X-rays go in so I may as well get rid of it from the outset.

Then we walked down to the lake, slowly and in stages, and sat in the sun enjoying the view. We had a salad lunch at the Theatre by the Lake, then walked slowly back to the bus station. We probably only walked a couple of miles in total but my calf muscles felt like they had done a full hike.

So a good day, all things considered. After treatment starts I won't have the energy to even walk round the block, I'm reliably informed, so whilst I can it's important to make the most of it.

12 July - Motorola Milestone

Sleeping a bit better now. Still feeling light-headed and weak and wobbly on my feet. Fitness seems to have hit a plateau. People with experience tell me it's amazing that I am walking about as well as I am only two weeks after being discharged from the hospital, but I am frustrated that I am not noticing daily improvements. But it's good to amaze people. Hope I can keep it up.

My new Motorola Milestone 2 smartphone came on Monday so I have been busy playing with it and trying to get it set up the way I want. There's nothing like a few geek toys to keep the mind occupied and off darker thoughts.  It really is a super gadget and does everything I want. I'm even posting this on it. The screen is easier on my eyes than the PC screen is. But I can't figure out how to position the cursor in this Blogger text entry box in order to edit what I have typed.

9 July - Margery and a concert

On Friday evening one of our wonderful neighbours, Margery, a lady of 87 who looks 30 years younger, has survived about 3 life threatening illnesses and is still full of optimism and life, invited Olga and myself for supper. It was a big help for Olga who is very tired.

Whilst we were there Margery mentioned that she and a friend were going to a piano recital at the Rosehill Theatre near Whitehaven the following night. I wondered whether there would still be tickets and a few minutes later two tickets had been reserved and arrangements made for Olga and I to go with Margery and her friend to the concert.

I was tired after the supper so we decided to take it easy on Saturday and conserve my energy for the concert. Although it is not very far away we had never been to the Rosehill Theatre before. It is a charming, very small theatre set up on a hill behind Whitehaven and was apparently established in the 1950s to provide some cultural life for the top scientists and intellectuals who were employed at Windscale, Britain's first atomic plant, who would otherwise have been difficult to persuade to come to such an isolated spot. We met one of them, now 87 and walking on sticks, who told us that he "came for 5 years and ended up staying for 50." We had a short conversation - he asked Olga about Chernobyl and wished me luck with my treatment.

We enjoyed the concert very much, and it was a real treat and a morale booster to get out of the house and engage in normal life for a bit.

8 July - News of my treatment

A letter arrives from the Radiotherapy Department at Cumberland Infirmary with news of the next stages in my treatment.

On 19 July I have an appointment to have a thermoplastic mould made of my head. This will be worn during treatment to keep my head still and in the precisely correct position so that the radiotherapy beam can be targeted at the tumour.

Then on 21 July there will be a second appointment for me to have a CT scan wearing the mask so that they can produce the plan for the treatment.

My Macmillan nurse phoned to confirm this information. She said that she expected the actual treatment would begin in August.

7 July - We meet our Macmillan Nurse

Another night with not much sleep. But feeling reasonably well and alert in the morning. Spent a couple of hours playing with my radio "toys" and ordered a new Android Smartphone so I can get rid of the ghastly Windows Mobile that prevented me from accessing email when I was in hospital.

After lunch had a meeting with the local Macmillan Nurse. This was extremely useful. For the first time, someone sat down with us who had the time to answer all of our questions. She was also able to tell us of the various other support services available, which include Hospice at Home and respite care to relieve Olga should I become so ill that she daren't leave me. All free, either through the NHS or charitable organizations. I was really quite impressed.

I can apply for a disabled parking card that will allow anyone who takes me somewhere by car to park in reserved for disabled spaces. Apparently I am then also entitled to a free bus pass! I am even entitled to claim a disability benefit - though I gained another unwelcome insight into the way the professionals view my case when I was told that payment would be expedited under a special rule for patients that are not expected to live for six months!

The nurse gave us some more information about the actual treatment. I had read that radiotherapy makes you feel tired, but she said that "it will make you feel tired as never before." Many people just crawl into bed after treatment. So it is likely that the next couple of weeks before treatment begins will be the best couple of weeks I will have for a while, at least.

What seems most important to me now is to make the most of these few days when I feel in a state of dreamlike well-being, to enjoy them as much as possible.

6 July - Can't sleep

Another day, another restless night. Inability to sleep is one of the effects of the steroid medication I  am taking to control the brain swelling, apparently. I have started taking a couple of codeine tablets at night - though I'm not in any pain - and they make me drowsy and I get two or three hours sleep if I'm lucky. But once I wake up I can't get back to sleep again. Last night I was kept awake by a Beethoven piano sonata I'd heard a couple of evenings ago playing endlessly in my head.

I had the idea to look and see if other people had written blogs about their brain tumours. I added a few links to the right hand sidebar of blogs I might start to follow up if I'm brave but it was really a bad idea. Many of the people had nasty symptoms and problems with the treatment and just about all the people who started blogs eventually died. Not much of a boost to my hopes that I can be the one to beat the bugger.

5 July - Learning about my treatment

The last few days have been a bit surreal. I'm still feeling weak, tired, a bit unsteady on my feet and have trouble sleeping, but I'm starting to take more interest again in other things, am eating like a horse (and not putting any weight on!) and really feel as if in a couple of weeks I might be back to normal. It's hard to believe what the doctors told me, and I suspect this disbelief has a lot to do with how optimistic I feel at the moment.

This morning we went for the appointment at the Radiotherapy and Oncology Department at Carlisle Infirmary. At least this doctor didn't use words like "incurable" or give me an expiry date, unlike the sadist at Newcastle. Olga was so anxious about what we might learn I was afraid she might pass out before we were called to see the doctor.

In the end we didn't learn much that was new. The doctor told me some technical stuff about the tumour that I didn't understand, except that it was a "Grade 4". I asked if that was good; his reply was on the lines of not from my point of view.

The surgeons at Newcastle had removed as much of it as they could, but they could not be sure to have removed all the fast multiplying cancerous cells. Therefore the doctors are recommending a course of treatment consisting of radiotherapy and chemotherapy. This will begin in about four weeks. I don't know the reason for the delay, unless it is to give me more time to build up my strength after the operation. From what I have been told about the side effects and things I will be at increased risk of during treatment I will need to be strong to survive it!

The radiotherapy will last for six weeks and will involve daily (weekday) visits to Carlisle for treatment.

The chemotherapy will start at the same time and will continue for about six months after the end of the radiotherapy, depending of course on how the patient responds to the treatment. The drug they will be using is Temozolomide (Temodal). If the radiotherapy doesn't make me feel ill the drugs will, by the look of it.

For now all I can do is take it easy and build my strength up. The only things I'm not allowed to do is drive a car (which I already knew) or go swimming, which I couldn't anyway. I'm even allowed a glass or two of wine with my dinner if I want to, which is cheering!

I'm not looking forward to the treatment, which seems guaranteed to make me feel like shit, but not having it is not an option. It's my only chance to beat the bugger and I'm going to give it a damn good try if at all possible.

Thanks to all who have written with cards and well wishes.