Nausea

Some nausea today, tried the Paspertin (metoclopramide) again....No effect, bummer.

More Seizureless Exercise

I didn't do my planned rowing yesterday because I was feeling rough, but this afternoon I did a straight 30 minutes at around 135bpm with no problems. I think I'll keep it at this rate until I talk to the Nuerologist next Wednesday.

Feeling Rough

Feeling a bit rough today. A touch of nausea this morning, so I took a Paspertin which didn't seem to help much. Once home from Radiation therapy I just sat on the sofa an drifted in and out of sleep.

Perhaps I shouldn't stay up to 2am in future.

Exercise without seizure

Since changing the Timonil regime on 20th I have had no seizures! Before I was having at least one at least every second day for 4 weeks.

So I thought I'd push it a bit and get on the exercise bike at around 18:00 (before taking the evening's dose). Did 32 minutes averaging at 132bpm (which would have previously guaranteed a seizure) with no problems. I'll try a set of intervals on the rower tomorrow and keep my fingers crossed.

Wild and Ratatouille

Went to see the new Pixar movie Ratatouille yesterday with a couple of old friends. If you've liked previous Pixar movies, you'll like this one. If you like looking at how technology in animation is getting better and better, just watch the water and fur in this one. Awesome.

It's Wild (pronounced vild = game) season in Switzerland at the moment so we preceded the movie with some Rehpfeffer (peppered venison) cooked in the traditional Swiss way served with Spätzli, Brussel sprouts and Caramelised chestnuts Mmmm. I even allowed myself a glass of Primitivo to celebrate (something).

A lovely evening all in all.

Working Lunch

On the way back from today's therapy, I stopped off for a nice lunch in Mellingen (close to the office) with a colleague and after boring him with all the gory details of my last couple of months I caught up on all the latest gossip at the office all the organisational changes, whose gone, whose new......

A bit of a reminder that life goes on with or without you.

Decided the hair would look better if shaved really short, so Carol got out the shears. I think I was right, but have still got a bare patch on the bit of my head that wasn't already bald. that Carol reckons its the shape of Italy, but why would the Radiation guy be using Italian shaped beams. I wonder if you can get designer shapes done?

Caught out on afterlife

In yesterday's blog I mentioned in passing (during the hair saga) that Carol and I had been discussing what might come after death. Well somebody spotted that I hadn't mentioned the discussion anywhere else. Sorry about that, I still haven't quite got the hang of getting all the important stuff in a blog yet.

Well, Carol and I disagree; Carol reckons nothing follows death, but I (want to) believe in an afterlife as part of a common consciousness (maybe that is as a part of god). I don’t fear oblivion, but I believe there is more to the universe than the physical, and there is some (not much) evidence to support this.

This is probably the only question that we will all know the answer to one day but will never be able to tell anybody about it. I can't help thinking this will be a recurring theme of this blog.

Hair Loss

Eek, I'm losing hair around the radiation entry points, big clumps of it.

Kayleigh spotted it while we were out at a chinese restaurant in Baden celebrating Carol's birthday. Carol then mentioned she had already spotted it earlier (a bit of Mother-Daugter oneupmanship :-). but had decided not to mention it becase we were discusssing what comes after death (nothing, afterlife, reincarnation etc) at the time and thought I might get upset! Anyway I reached up to my head and gave a pull and found myself with a handfull of hair, not exactly conducent to a succesful dinner, so I hid it away as carefully as possible for later disposal. But then, of course, the urge to do little pulls during the evening were irresistable. Hope nobody noticed.

I was warned this would probably happen, so I'm not worried, but it does mean getting Carol to do some creative hairstyling. Luckily I'm nearly bald already, so maybe I should give in and go topless.

Happy Birthday Carol

Happy birthday Carol, our girls have arranged something for this evening should be fun.

p.s. Yesterday's Rugby final win by SA against England deserves no more than a ps, awful game. Only bit of decent play was Mark Cueto's beautifully set up try (that was wrightly or wrongly disallowed). Too much kicking and not enough running. Our SA friends agreed.

World Cup Final - Rugby

I decided to change the order of my Timonil (Carbamazepine) Retard intake to try and reduce the focal seizures moving from 1/0/2 to 2/0/1 because I reckoned that it made more sense for a retard to be working most during the day and not overnight (I know I should of checked with the Nuerologist first, but....). Ive also stopped taking it together with the Chemo in the morning in order to have it with food an hour later (as suggested on the insert). Had one small seizure (Ian grade L1 at 13:30, but early days yet)

Got a bunch of people coming over this evening to witness the slaughter of South Africa by England in the real World cup final....Rugby. We have South Africans and English in the house so we probably use the Swiss as referees in the living room. In fact my son-in-law played for the Swiss national Rugby team, and I played a little at university (obligatory at Salford) so there is plenty of Rugby in the family.

Book: A Year To Live

Just started reading a book called a"A Year To Live" by Stephen Levine which is based on an experiment where he tried to live a year of his life as though it was his last.

This might seem a bit of a wierd concept except when you realise that this guy has spent over twenty years working with terminally ill patients helping them to come to terms with their parting.

I'll keep you posted.

A chat with the Boss

I'm employed as an Enterprise & Solutions Architect for a major software provider working with both customers and internal development for providing solutions in the the Financial Services industry.


Before C day (or maybe is should be S for seizure of T for tumour) I had a job which involved long hours (sometimes all hours), and a lot of world travel working with customers and our US head office. Given my disease and its likely progression it is unlikely that I will be able to undertake my duties fully ever again, Having given this some thought, I have decided that I might go crazy if I didn't some professional interest going forward (note the drop into office speak, I'll be talking about paradigm shifts soon) even though I'm now mostly shifted to a new leading paradigm (told you).

Anyway I thought it was about time to talk to my boss and sound him out on whether he thought I could still add value even if my employment dropped to say 20% and was a lot less open to long travel stretches, and that it could at any moment stop. He said he would be happy to accomodate almost anything as long as I am happy and didn't feel over stressed and that my doctors were OK with it.

So now I just need to talk to HR on how that might effect Insurance (which keeps the salary coming for now) and any pension stuff (which keeps something coming for my family later).

A Friend in Hospital

Had my blood platelets count checked this morning before being issued with my Temodar forthe next two weeks. Apparently I still have a few platelets. Had a chat with the Oncologist whose seems to be very happy with my lack of side effects so far (so am I).

Went to visit a friend in hospital this afternoon who has just had a chunk of his Colon removed due to some ruptures which were preventing waste from being transported properly and trapping some of it (I think the condition is diverticulitis). He seems to be recovering well, but has gone through a few nights of hell. Get well soon mate.

Virtual Trial

Joined the Musella Foundation Virtual Trial today.

Quote from the Web Site:
"The Brain Tumor Virtual TrialTM is a new concept in collecting and analyzing outcomes data for brain tumor patients. We collect information from brain tumor patients - or their friends / family, over the Internet. Participants are not told what treatments to do - we just record and analyze the outcomes of the treatments you and your doctors decide to try. The idea is to enable us to quickly identify which treatments or combinations of treatments look the most promising. We will then perform a traditional multi-center study on the best combinations of treatments."

If you are a Brain Tumour victim I suggest you join too, the more information we get about the effectiveness treatments the better

A spiritual can of worms

A very good friend and one of the most intelligent people I know, who also happens to be a very devout christian sent me an e-mail today. When we spoke last at one of our Sunday Brunches, I mentioned if he or his lovely wife come across any tips, tricks or treatments that might be worth looking into that they should let me know.

So here he was offering me a tip that suggested that I might start talking to god and reading the bible as a way to relieve suffering and even possibly towards healing. Of course I wasn't suprised by this tip, it was only to be expected that a true christian friend would feel it their duty to try and help me with christian ideas, and I thank him for being a true friend. His suggestion, however, opened a spiritual can of worms that had already been pushing at the lid.

I am not an atheist and I have always called myself an agnostic but that is not exactly true except that I have not experienced anything that allows me to believe in the existence of a god (the usual sitting on the fence style arrogance that you would expect from an agnostic) .

But if I am really honest with myself I would be better described as Religious Apathist.

That is I rejected the church (Anglican) and the asscociated religion (Christianity) I was brought up with in a very early blank period of my life but then made no real attempt to look at what I really believed in for the next 37 years. I'm sure this isn't an uncommon state for many people modern western society, even more common is those that claim a religious belief without actually understanding it or practising it.

It is not uncommon for people faced with the prospect of an early death to turn back to their default religions by way of insurance and a longing to believe in something. I can understand this attraction for finding spiritual peace.

But what does someone do when he has cast off one set of beliefs, and hasn't really got time to learn another (or even relearn the old)?

At the moment I am not ready to return my friend's e-mail, but I will pick up the Bible again and read John as he suggested.

Blog Started

I started writing this blog today so all the entries dated before today were written in retrospect starting on the day I had my 1st seizure. From today I'll try and write the entries properly.

Why?
I'm writing this blog so that family (all of whom live in England apart from my immediate family) and friends can catch up with how I'm doing (pretty well at the moment by the way), and also as a kind of therapy for myself that reflects my state of mind and body as my cancer progresses and I (along with my friends, family and the medical profession) try to fight it back.

Also as I mentioned in a previous entry, so many of the cancer blogs I have read concentrate on the disease and its treatment and forget to mention the the rest of life that goes on around and with the victim (its too early to say sufferer, and I hope it stays that way). I'm hoping to cover it all, if I'm brave enough.

My dearest wife Carol has agreed to continue this blog if/when I am no longer able to continue it for myself.

Brain in a Bottle

A chunky package arrived today containing all the reports so far and a CD with all my scans on as promised by the Neurosurgeon. Even though all the doctors have been very open, it is quite suprising how ploughing through this stuff gave me a much greater insight into what has been going on.

Some of the most interesting pieces of info came from pathology report that followed the biopsy.
For instance I had already been told that 4 samples had been taken, but what I didn't know was how much they took. Each sample was a 1.2cm long 0.3cm wide!

Nausea

Got a case of moderately bad Nausea today, so I tried the Papertin....It appeared to do nothing, so I just had to suffer.

Questions for the Surgeon

Today was the check-up meeting with the surgeon that did my Biopsy, he went over the diagnosis again. Just to make sure I understood everything that was happening, and then asked if I had any questions.

I had a list:

I wanted to know how my progress would be checked, and he said the next check would be an MRI scan about Six weeks following the completion of the radiation therapy unless anything happened earlier to cause concern. I was quite surprised that it was so long. but he explained that checking up earlier would be unlikely to show the effects of the treatment and does in some cases show a worsening if too early.

I said that my seizures were mostly under control but I could not exercise without bringing on a focal seizure. He asked if I had had spoken with the neurologist (a Professor no less) who was responsible for the overall coordination of my case. I said I didn't even know that there was an overall coordinator let alone who that was, he was most embarrassed as this guy should already have been in contact with me. He promised to contact him immediately.

I asked if he recommended any dietary supplements and he said there is no strong evidence that any might help, and advised against any major changes in diet that might upset the treatment.

I wanted to know if its likely I'll be able to drive again. Yes, as long as seizures are under control and I get a clear EEG.

He agreed to get a full set of the hospital reports and scans on CD to me (I needed pathology and MRI reports to join the Virtual Trial)

Carol asked the 64 Million Dollar Question; what is likely to happen to me over time?

He explained that Brain tumours do not replace brain cells so all the effects are caused by the continually growing tumour placing pressure on the brain. The most severely effected areas will be those close to the tumour. In my case the most likely early functions affected would be:
Ability to discriminate between sensory stimuli on the RHS (already have a heat sensitivity problem). Ability to locate and recognize parts of the right side of the body, ability to write. Death is likely to occur due to excess pressure on one of the essential functions in the Brain Stem.

So there you have it.

Concurrent Radiation and Chemo therapy starts

I started my concurrent Radiation and Chemo therapy today.

First to the Oncology and Haematology unit to pick up my Chemo and schluck the pills down (150mg Temodil; Temozolomide). I was also given some pills (Paspertin; Metoclopramide) that should help with any Nausea I might suffer. Then over to the Radiation unit.

The Radiation Therapy is quite literally painless.

First I was shown the control room (as it was my first day) which has a PC which drives the accelerator gear that generates the X-Rays, and a bunch of monitors that are connected to cameras in the therapy room so they can make sure I'm OK during the therapy.

I was then led into the therapy room where I was asked to lie on a table behind which the accelerator gear sits. I then had my (previously made) mask fitted and clamped to the table, the lights were dimmed and the two radiation technicians lined me up by moving the table to align lasers on the the mask's alignment points. The lights were then brought up very brightly (I guess for the benefit of the cameras) and I was told that the treatment would now start.

The technicians retired to the safety of the control room and after a few seconds I heard the accelerator head (if that is the right name) positioning itself for the first of two 3D doses. Each dose lasted about a minute with about 30 seconds repositioning time in between. All you notice during the treatment is the whine of the accelerator as it delivers the dose and the whirr of the robot as it repositions.

Once completed one of the technicians came to release me from the table and we said our goodbyes until tomorrow.