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.
Sunday 27 April 2008
Saturday 26 April 2008
Tutankhamun & the Sultan
The kids took Carol and I out on Friday as a birthday present to see the new Tutankhamen exhibition showing in Zurich. The centre pieces of the exhibition are simulations the graves as they had been found when originally opened Howard Carter. These were a quite interesting addition to the usual Tutankhamen exhibitions but overall the exhibition was rather small and not many original artifacts were on show, taking only just over an hour for a good look around.
The plus side was that we got to the after event restaurant earlier. The kids had chosen the Sultan, a Tunisian restaurant (couldn't find an ancient Egyptian close at hand) with excellent food (Mesa, couscous and other Tunisian specialities), authentic surroundings and friendly staff.
Thanks Amber, Kayleigh, Mario and Joss for a lovely evening evening out.
The plus side was that we got to the after event restaurant earlier. The kids had chosen the Sultan, a Tunisian restaurant (couldn't find an ancient Egyptian close at hand) with excellent food (Mesa, couscous and other Tunisian specialities), authentic surroundings and friendly staff.
Thanks Amber, Kayleigh, Mario and Joss for a lovely evening evening out.
Sunday 20 April 2008
Thanks for a great 50th
Many thanks to everybody who came to my 50th Birthday event yesterday. I had a great time and I hope everybody else did to. Thanks for all the unexpected presents, and for knowing me too well.
Special thanks to Carol who spent best part of last week sorting the house out and cooking and then most most of yesterday making sure everybody was fed and watered. Love you.
There was a time last year when I was unsure if I would see my 50th. Now I'm looking towards a good few more.
Special thanks to Carol who spent best part of last week sorting the house out and cooking and then most most of yesterday making sure everybody was fed and watered. Love you.
There was a time last year when I was unsure if I would see my 50th. Now I'm looking towards a good few more.
Thursday 17 April 2008
Is it Crohn's or is it Crohn's?
Sorry about the gap, had a funny kind of week of ups and downs. Lots of work on which keeps my mind off bad things, but the truth is I been suffering a bit of a chill accompanied by annoying headaches but I think I'm pulling out.
But that hasn't been the main worry this week. Remember just before Christmas Amber was taken into hospital due to a bout of supposed colitis that for a while they thought was Crohn's disease, a chronic episodic (and incurable) form of inflammatory bowel disease.
Well a few weeks ago she started to suffer the same symptoms again, so she has been in hospital for more tests. The doctors decided today it really is Crohn's. We don't really know what that means yet, but she has an appointment next week to talk about therapies.
Sometimes I despair at the medical profession.
But that hasn't been the main worry this week. Remember just before Christmas Amber was taken into hospital due to a bout of supposed colitis that for a while they thought was Crohn's disease, a chronic episodic (and incurable) form of inflammatory bowel disease.
Well a few weeks ago she started to suffer the same symptoms again, so she has been in hospital for more tests. The doctors decided today it really is Crohn's. We don't really know what that means yet, but she has an appointment next week to talk about therapies.
Sometimes I despair at the medical profession.
Birthday's for the boys
Many congratulations to Joss, my youngest, who is 17 today on the 17th.
Damn do they grow up fast!
Normally it is the only way to remember my birthday which is two days later (every year).
But this year people like to remind me its my 50th. Anyway I'll make them suffer this year by forcing to them come to my party.
Damn do they grow up fast!
Normally it is the only way to remember my birthday which is two days later (every year).
But this year people like to remind me its my 50th. Anyway I'll make them suffer this year by forcing to them come to my party.
Tuesday 8 April 2008
Reliving My Life
I've been fully back to "normal" for a day now, much happiness.
Over the past couple of days I have had to re-live the last 8 Years of my life in order to write a letter to catch up with my old friend.
It is extraordinary how much I recalled in the space of only a few hours and how many many extreme emotions I relived over this time; happiness, pride, disappointment, surprise, wonder and sadness just to name but a few.
By the time I finished writing the letter, my mind was full with these renewed thoughts as if they had all just happened yesterday. So if I did this to cover the rest of my life, would this bring all my the memories to the fore? I think I might like that, even accounting for how the older memories will be a little harder to grab hold off.
If I am going to do this I think I need to do it soon because I'm finding that over the last few weeks it takes so much longer to write, not because I can't think of things to say, but I keep making mistakes as I write and the spell checker is working overtime due to repeated word sections and transliteration of letters. I guess I shouldn't be surprised, I always had a mild dyslexia and if the tumour's going to hit the areas of speech and writing this might could start to happen. But it could be I just need better reading glasses.
Over the past couple of days I have had to re-live the last 8 Years of my life in order to write a letter to catch up with my old friend.
It is extraordinary how much I recalled in the space of only a few hours and how many many extreme emotions I relived over this time; happiness, pride, disappointment, surprise, wonder and sadness just to name but a few.
By the time I finished writing the letter, my mind was full with these renewed thoughts as if they had all just happened yesterday. So if I did this to cover the rest of my life, would this bring all my the memories to the fore? I think I might like that, even accounting for how the older memories will be a little harder to grab hold off.
If I am going to do this I think I need to do it soon because I'm finding that over the last few weeks it takes so much longer to write, not because I can't think of things to say, but I keep making mistakes as I write and the spell checker is working overtime due to repeated word sections and transliteration of letters. I guess I shouldn't be surprised, I always had a mild dyslexia and if the tumour's going to hit the areas of speech and writing this might could start to happen. But it could be I just need better reading glasses.
Thursday 3 April 2008
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.
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.
Subscribe to:
Posts (Atom)
