Your Good Healtth

Or mine actually.

Given the origins of this blog I thought I should mention the current state of my health four years on from that fateful day 1n 1997.

1. I am still alive: This in itself is more than I could have hoped for and I seem to well into the long tail of the morbidity statistics for my condition. Sometimes it is hard to imagine that I am terminally ill.
2. Side Effects from my condition or treatments: It is difficult for me to tell which is which, and the doctors can't tell either.
   - My Brain-Speech connection still has problems and I lose words and forget names more than is normal (or was normal for me). It may be getting worse, but it is definitely a slow progression ifit is. It is the only thing that still scares me, the idea that I might at some time lose my ability to communicate.
   - I still have some insensitivity on my right side but either it has got better or I have gotten used to it, I think this was a by-product of my biopsy, but as I said nobody can prove it one way or another.
   - I still get headaches on the left side of my head in the mornings, on waking, several times a week, but they are not severe and they usually go away within 30 minutes.
3. Drugs: I only take Timonil (Carbamazepine) 300 twice a day as a precautionary measure against seizures. This to make sure that my regular EEG doesn't show too much craziness in the damage areas (see plot below) because if it did  I would be banned from driving. (Given the drugs I am more likely to get banned for other reasons, but more of that in another post perhaps).
4. Monitoring: I am now down to 2 check ups a year which comes down to alternate EEG / MRI appointments. Sometimes I feel embarassed taking up the time of the guys and gals at the hospital just so that Professor Neuro can say "No Change"

Just in case anybody is interested here is my latest EEG from yesterday:

Interesting bit is around 3:47 where the sensors (FP1-F7, F7-T3, T3-T5, T5-O1) around my damage get a little crazy,
but not crazy enough to worry Prof. Neuro thank goodness

 P.S. I have added a tag Health so you can track just the health stuff

And Here's To Health

The last health update was "The End of a Tumour" post back in June so I thought an update was in order (as that was the reason for the blog in the first place) so here goes.

I'm fine....

Actually, there really isn't much more than that. I have had two MRI scans and one EEG since June. The last MRI was yesterday and the scan results were identical to September's which was slightly clearer of foreign matter than June's. The EEG in November showed only tiny symptoms of abnormality and they were probably mine already.

Prof Neuro is very happy and so am I
My seizure medication (Timonil) has been dropped to 2x300mg from 2x400mg from 3x400mg a day with no adverse (or favourable) effects.

Leftover ill effects are fairly regular but light headaches in the left-hand brain stem area as already mentioned in the past. The lack of sensitivity on my RHS seems to have almost gone away (most of the time).

Given the improvements I kept asking about allowing more than 30% work. Finally, in November Prof. Neuro (obviously fed up with my nagging) said NO for at least another year!

So there you have it .... normal 30% life has resumed for now.
I think I've missed out on too many risks
----------------------------------------

To laugh is to risk appearing a fool,
To weep is to risk appearing sentimental.
To reach out to another is to risk involvement,
To expose feelings is to risk exposing your true self.
To place your ideas and dreams before a crowd is to risk their loss.
To love is to risk not being loved in return,
To live is to risk dying,
To hope is to risk despair,
To try is to risk failure.

But risks must be taken because the greatest hazard in life is to risk nothing.
The person who risks nothing, does nothing, has nothing, is nothing.
He may avoid suffering and sorrow, but he cannot learn, feel change, grow or live.

Chained by his servitude he is a slave who has forfeited all freedom.
Only a person who risks is free.

The pessimist complains about the wind;
The optimist expects it to change;
And the realist adjusts the sails.


William Arthur Ward

End of a Tumour

The latest MRI CD arrived yesterday, so I've put together a composite of the side and top views at the same position from each scan set since August 2007 . The first two show the fast early growth during August 2007 and then the stabilization during the combined radio and chemo therapies in February 2008 and the then the almost complete obliteration by May 2008 resulting in almost identical pictures over the last year. All I have now is the leftover scarring (internal and external) which will stay with me until decomposition.

Prof. Nuero and Dr. Chemo were both well pleased at the stability over the last year (as was Carol and, not to mention, me). But they weren't pleased enough to let me work more than my current 30%.

So what happens now? We wait and watch, check it one more time on the 3 month check up cycle and then I''ll allow them to put me on to 6 month cycle if everything looks the same. Sometime of course it is likely to be back but where and how is anybody's guess.

Until then its time to forget about it and celebrate life as much as possible.

MRI News, No Change or may be not

Finally got the results of the MRI from 16th February.
Only seen the report so far so no pictures yet. So how does it look?

Befund:
Zum Vergleich liegt die letzte Kernspintomographie des Schädels vom 14.11.08 vor.

or
Looks the same as it did on the last MRI of the skull from November 2008.

Don't you love the German word for Magnetic Resonance Imaging - Kernspintomographie, much more "Nuclear Age" rather than the "Magnets" of MRI don't you think.

In the detail of the report we can see a little more:
No signs of Atrophy or Vascular (vessel) disease around the Biopsie scars. Good start.

At the end of the biopsy canals (from where they stole a bit of brain from me) there are two licorice intensity defects of 8x5mm and 3x7mm (ie. my sharp looking tumour has become a couple of fuzzy blobs). On the larger of these there is an un-sharply bordered, anomalous, discrete enhancement that might indicate a very light tumour growth.

That is not something I wanted to see, but at least they recommend another 3 month before the next check up so that must be good, or may be they want me to have a little bit more fun before the onslaught.


P.S. Anybody interested in looking at a full MRI report (in German), just put in a vote and I will put one up with all the names and stuff to protect the innocent.

Confusing Scan's

I Got the scan CD at the beginning of December for the scans of November and I planned to do one of the super comparisons that I did back in July. Unfortunately that was not so easy this time.

For the past two sets of scans they used a different scanner (the left one for anyone being treated at Aarau Kantonspital) and when I looked at the two sets compared with the earlier scans it was difficult to make a simple comparison. 

Instead of showing a clear Tumour the pictures where a lot more fuzzy and indistinct. In fact to my uneducated eye it was a difficult to see what was going on. Also, the format was square rather rectangular and the resolution lower. I'm sure that the experts understand the pictures fine, but I would rather have pictures from the other scanner (the right one) to look at. I'm wondering if I have been put on an old (cheaper) machine while I have been improving?

Anyway the point is I am not going to put up the scans this time and I'm going to see if I can get on the other scanner next time. Perhaps I need to complain about some deterioration in my health next time to get on the better machine :-) 

Scans Looking Good

Sorry about the delay.  Lots of things been happening, but more of that later.

I just had to get on and say that after 3 months without treatment the latest MRI shows Tumour hasn't really changed and the fluid and scar tissue, although it looks a bit different (technical term), is looking OK too. So I get another 3 months reprieve, and can look forward to a treatment free Christmas and new year.

Carol and I are driving to the UK tomorrow (well I'm driving, Carol's riding) for a week of family and shopping. 

One of the reasons we are going back is to visit my dad. He is suffering from late stages Alzheimer's and I feel bad about not visiting him for a while.  He doesn't normally recognise anybody from the family any more and that is quite a painful experience. I hope it is less painful for him, but who knows what goes through his mind nowadays.

I doubt you'll hear from me until I get back but then I'll fill you in on all kinds of stuff.

Next up on the Treatment Diet

The last couple of weeks I've started to be a bit more thorough looking into what might be next for me on the side of Tumour treatments and I've found there is a lot of reading to do.

My expectation is that in November things will look much the same as before but then the Tumour will start hitting back. Given that situation we will need to find a next phase treatment in the new year. One option is to go back on to Temodal (Temozolomide) and hope there is still more to be had before the resistance sets in. Another option is to go directly to the 2nd line treatment of PCV (Procarbazine, Lomustine & Vincristine) .

A third option is looking for a promising Trial that is aimed at Grade 3 & Grade 4 tumours. Failing to qualify for my favourite TTF trial (as I was downgraded), there are some promising results being shown from DCVax-Brain a Gene Therapy Vaccine but unfortunately all the trial sites are in the US.

But then again I could be completely wrong about what happens over the next few months.

A Break from Chemo

More news from Tumourville.

I got the results from the latest MRI scans yesterday and although there is no more shrinkage what is left is showing a lot less contrast. This is caused by less contrast agent being taken up by the tumour area and indicates less activity in the tumour. The bad news is that the current chemo treatment may have reached its limits for now.

Anyway the hospital tumour board has decided it is time for me to take a three month rest from Chemo. This should allow my body to regain some of its old strength and hopefully build me up for the next phase of the fight.

I'm obviously in two minds about this but I'm very thankful for the break.
Getting the results from the next scan (in November) is going to be pretty scary, but until then time to enjoy at bit more life.

Happy Birthday Tumour

I'm back on the Chemo at the moment which always makes me a bit miserable, add to this I managed to hurt my hip somehow such that I was hardly able to walk yesterday, Today it is feeling a lot better but I'm still hobbling about in a nauseous daze. I just wish I know how I dit it, Carol reckons it is a touch of arthritus but I then had to remind here SHE has the arthritus, I have the tumour.

One year ago today at around 7:30pm, and completely out of the blue, I collapsed with (what I call) my Big Seizure. I can't believe that a year has gone by, in fact I swear that the days are getting even shorter for me now. Anyway I should be happy, my tumour seems to be under control at the moment and I am pretty fit all in all.

I have my regular MRI Scan this week but unfortunately is more than a week later I get the results. I'm hoping for no tumour and a rest from Chemo. But thats probably as likely as our Kitchen being finished in 2 days.

Fitting the Cancer routine

Strange how having Cancer has become part of lifes routine. As I can pretty much trust the Chemo rythym to make me sick on a specific 5/6 days in each 28 day cycles. So I now put them in my diary leaving me able to plan the rest of my life as around 100% normal (except the odd scans and result session).

1-2 Prepare Moscow event, Dentist
3-4 New aquisitions slide set
7 Prep Friday call, Pick up Chemo, Goto Market Webcast
8-10 Paris meetings
11-12 Chemo starts - Phone conferences and desk work only
13-17 Heavy Chemo Days - Light homework when possible
18 Customer Meeting
19 Off to Gran Canaria for 7 Days -- Hoorah

Its amazing how much work you can get done in less than 3 hours a day :-)
As long as it gets no worse than this I'll be a very satisfied sufferer.

Scan Pictures

Finally got the pictures for the Scans from the end of May. So now you can see what all the excitment was about.

This is the initial diagnosis from last August (no contrast agent used)



















Here was the shock growth only three weeks later before any treatment started.



















This was six months, much radiotherapy and chemo later in March 2008. The battle was really on.




















Finally in May 2008, we are just about back where we started. Next time we are aiming to see the tumour go up is own ****.



















Cool eh!

Never forget what lurks behind

When I first started this blog I didn't think that I would make an entry everyday, but likewise I didn't think I would go three weeks without saying anything.

When I looked at the date today I was shocked that so much time had gone past, time I don't have to waste. It's funny how easily I have slipped back into the old routine of getting up for work each day, and jumping on planes for meetings here, there and everywhere and forgetting to spend enough time with family and friends. I've even noticed I'm not reading the Cancer news bulletins. Its almost as if my Tumour had never happened.

But that just isn't true; despite the improvement we saw 4 Weeks ago, I'm still taking Chemo to fight the little bleeder and losing a week in every four because of it, I'm still battling the feelings in my left hand side and still making mistakes with my speech. And today I suffered a small seizure after four weeks without any (and don't forget the pills I take to hold them at bay).

I'm convinced you have to fight Cancer mentally and physically if you are going to keep it at bay as long as possible, and that means reminding myself I have it, I must never forget it no matter how much I want to.

I think I understand why my doctors won't let me work at my day job any more than 30%, its because I have another job to do ... fight Cancer

Maybe I'll get back to my blog a bit more often too.

MRI scans results

The MRI results are in, and they look good!

The tumour has definitely shrunk. After the last scan it appeared on 3 scan slices and now its only appearing on one. I reckon that it looks smaller than when it was diagnosed 10 months ago. Both Chemo Man and Professor Nuero were there to bring me the news this afternoon and they couldn't wait to show me the results. This is the first time in the last 10 months I almost cried with joy.

More good news; they are now happy to let me drive (although still recommend against the motorbike).

There is a down side to all this; given the excellent response to the Chemo and the minimal side effects (apparently) they are recommending 3 additional Chemo cycles to keep pushing down the curve. It took me less than 30 seconds to make the decision to continue (without feeling any pressure from Carol's "you bloody better"). I still have to way up the damage the Chemo is doing to me but that is damage I'll probably never get to see, so the choice is no choice.

I talked about increasing my working week from 30% to something closer to 100% and both Chem and Neuro shook their heads violently in unison, telling me that these results are almost certainly to some extent due to not overdoing it. So sorry work chums I'm under doctors orders to keep it down (however much it might hurt).

Now I'm going to sit down for Pizza and a glass or two of wine with a big smile on my face.

40 minutes in the Doughnut

Spent an hour at the hospital this morning to get my latest MRI. I've got so used to this procedure of sticking my head in a doughnut for 40 minutes that I managed to get some extra kip. I only woke up for the radiologist (or is it a Magnetologist?) to stick a needle in my arm to introduce the contrast agent.

I must ask sometime why they do one set without contrast and a second (much shorter session) with.

My appointment to discuss the results are not until Friday week. This is my first MRI post Chemo treatment, so I'm quite looking forward to the results.

Career Decisions

To be honest my life hasn't changed a lot since I was diagnosed with my tumour nearly nine months ago. Sure, I have been through some uncomfortable therapies (and a little Brain Surgery) but I haven't been stopped from living a full life. I still work around the house & garden, do the washing up, go shopping, take holidays, (try and) keep fit, listen to music as much as ever, and enjoy the company of my family when they are around. I have also been working quite a lot, and was hoping to do so more if the treatments are finished for a while.

I guess I think about my disease several times a day. Sometimes its just when I'm taking my pills or when I accidentally see the hole in my head reflected in the mirror (or some kid stares at me just that little too long on the train), other times it is when I want to pop out and I know I have to to take a bus or rely on Carol to get me where I want to go. But none of these make me feel sad or depressed as they are just little life adjustments.

Today, though, I decided to let a colleague go to an important conference in my place. I would normally have been expected to attend this in my role, but I decided quite rationally to make sure this colleague started to take over my role more.

This was giving up on my career and it hurt!
I need to think about this....

Blood Tests

I am booked in to the hospital next Wednesday for an MRI with contrast, so I had to go to the doctor this morning for a blood test to check my creatine levels (no not cretin levels).

Apparently the contrast agent can upset the creatine levels in the blood, so I need a normal level before I go.Wasn't that interesting?

Yet another hole in the arm.

Sudden Seizures

After two and a half weeks of bliss without seizures I had THREE in one day, today.
I have no idea what brought those on, but it has brought the average back up again : Bugger

Perhaps it was the stress of entertaining two Carol's at lunch :-)

Chemo 6 - End of Primary Treatment

Started the last "official" Chemo cycle yesterday. So by Wednesday I have completed the state of the art primary treatment for a GBM tumour. So what next? Apparently, we wait and see.

In around 4 weeks time I'll go in for my next MRI scan and if not much has changed I'll be put on hold for 3 months. And what are we actually waiting for? For me to start feeling more external symptoms of the tumour, for my hazelnut size tumour to go to walnut size, for a new pea or two to appear. If I am lucky things will be the same as the last MRI. What we are not expecting is a complete recovery.

After all these months of being opened up, radiated and poisoned for the sake of this hazelnut it seems kind of odd to just stop especially when you see that the treatments have had some kind of visible effect. Why not just blast it to hell? but that's not the way it works with Cancer is it. Is this the lull before the storm.

Over the last few weeks I have noticed that my right foot doesn't lift as high as I want it to thus causing me to trip up steps more often than I used to, and while doing some gardening today I had to put in considerable effort to remain standing when my right foot involuntarily rolled sideways. Add to that my writing problems and an increased problem with finding words when I want them and you can see who is winning the battle at the moment regardless of how much improved the inside of my head looked at the end of February.

It is going to be very difficult just sitting and waiting.

Feeling Miserable

After no Chemo side effects for three days, the old nausea came down hard. I've been trying to work to keep mind off it but I keep loosing concentration (Sorry to anybody reading documents from me the past few days).

Although I classify how I feel in the classic Chemo symptoms of nausea and tiredness, it really just extreme feeling of unwellness where doing nothing makes it worse, but doing something is just so difficult. Does that make sense? And the worst is my food tastes so bad on the odd occasion when when I want to eat it.

Oh well, I'm hoping tomorrow will be be better. And then only one more cycle (probably) before a "treatment" rest.

Earlier in the week I made contact with an old friend who I hadn't talked to in around seven years, during most of this time he has been suffering painful problems related to his liver on and off, but mostly on. He is now waiting for transplant with even more pain expected during recovery. The most amazing thing is during this time he has taken on working with kids at a a local zoo and wildlife park and became a samaritan finally becoming the chairman of the local samaritans. It puts my feeble problems into perspective.

MRI Pictures

Got the MRI CD, so here are the pictures from the scans of 25 February compared with 27th August. The left picture is from the end of August and the right one is from 25th February indicating (I think) a quite substantial volume loss.

The pictures below show how much other junk has formed (mainly due to the treatment). This can be any of fluid, scar tissue or necrosis. This picture also shows very clearly how much space there is around the Brain now due to reduce pressure in the cavity.















The last picture shows quite clearly my newly acquired dent complete with ingrowing bone. I certainly think this is my best side dont't you, handsome beast.



















So all in all, as I said before, good news. Makes all the Radiation and Chemo worth suffering. I started cycle 5 on Saturday, just the usual nausea and tiredness so far. Only one more to go and then we'll need to find out what to do next. I hope the doctors decide to give me a few months rest from treatment.