Every fortnight (two weeks for any non-European readers) we host a Family Brunch which usually starts (late) at around 11 or 12am, and today was no different.
It is a rather busy affair with at least 7 adults and 2 children all pitching in to do a full English style breakfast with the addition of Muesli (in respect of our home country :-).
Occasionally we have friends around too, so today we had 9 adults and the 2 kids. For me these events are a highlight and am often disappointed on the quiet weekend in the middle. It is one of the few chances to have all the kids and their partners around us and the conversation (in our usual mix of English and Swiss-German) can go on well into the afternoon.
As it was the first time we had talked to our friends face to face since the discovery of my tumour a lot of our conversation was about my progress and how we as a family were all taking it.
Late in the afternoon this week we went 10 pin Bowling to wear of some the excess food and many of the participants were still around for dinner.
Some of the simplest of pleasures with friends and family are the most joyous.
In the evening (after a very small seizure) I thought for the first time it might be a good idea to start a blog. 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.
Sunday 30 September 2007
Wednesday 26 September 2007
Meditation
Yesterday's warmth has gone away.
About 10 years ago when I was going through a bit of a life crisis I thought I might get into meditation as a way of trying to get better contact with my inner self. As I was obviously really serious about this I bought the smallest book I could find (on Venice Beach, so you can clearly understand my frame of mind). The book was called "How to Meditate" by a guy called Lawrence LeShan. It turned out to be a very good and objective little book that explained meditation in its own terms and used "religion neutral" terms while giving examples from many beliefs.
Anyway, as you can guess I tried counting my breaths for around two weeks and not having had any out of the body experiences by then gave up. Carol's got a tattoo on venice beach probably the same day, that has lasted much longer than my meditation (I love that little butterfly today as much I did then)
Given my current mental state of up one day and down the next, I thought I'd dig the book out and start doing a little meditation for much the same reason as I did then, but with a much higher level of motivation now.
The Breath Counting starts today.
About 10 years ago when I was going through a bit of a life crisis I thought I might get into meditation as a way of trying to get better contact with my inner self. As I was obviously really serious about this I bought the smallest book I could find (on Venice Beach, so you can clearly understand my frame of mind). The book was called "How to Meditate" by a guy called Lawrence LeShan. It turned out to be a very good and objective little book that explained meditation in its own terms and used "religion neutral" terms while giving examples from many beliefs.
Anyway, as you can guess I tried counting my breaths for around two weeks and not having had any out of the body experiences by then gave up. Carol's got a tattoo on venice beach probably the same day, that has lasted much longer than my meditation (I love that little butterfly today as much I did then)
Given my current mental state of up one day and down the next, I thought I'd dig the book out and start doing a little meditation for much the same reason as I did then, but with a much higher level of motivation now.
The Breath Counting starts today.
Tuesday 25 September 2007
Somethings Changing
My right side is feeling different, kind of warm. Its almost as if I have a semi permanent pre seizure build up that never reaches its climax.
Monday 24 September 2007
Seizures are back
Unprovoked focal seizures back with a vengeance today. I had three of them, accompanied by a bit of a headache.
Thursday 20 September 2007
Radiation Planning
In order to make sure I am correctly aligned with the machinery that doses out the radiation, I have to be put inside a custom made mask that is clamped down and then aligned using a bunch of laser pointers glued to the ceiling. So I was in today to get my mask made and the laser markers put in place using CT scans as a guide.
So I lie on a bench with me top off and a CT Scanner behind me while a couple of nice ladies take a sheet of warm wet flexible translucent green plastic and lay it over my face. On each side of the gooey plastic are metal clamps that are clamped down to the bench on either side of my head. After what seems like minutes they deem to make a reasonable size breathing hole and then start sticking their fingers in every lump and bump on my of my face - including my eyes.
Once satisfied with a good tight fit they wait for the goo to harden giving an additional poke every now and then for good measure. Once fully hardened they take a set of CT scans and then mark up the mask with various target symbols (for the laser pointers).
The newly created mask (anybody seen the movie Hollow Man?) is then unclamped and gently ripped of my face and thus removing any need for a shave today (shame about the beard though).
They then take my photograph (I guess so they can all have a good laugh later) and send me on my way.
A thoroughly unpleasant experience (and remember I had Brain Surgery 3 weeks ago).
I wonder what they do with claustrophobics, use opaque plastic?
So I lie on a bench with me top off and a CT Scanner behind me while a couple of nice ladies take a sheet of warm wet flexible translucent green plastic and lay it over my face. On each side of the gooey plastic are metal clamps that are clamped down to the bench on either side of my head. After what seems like minutes they deem to make a reasonable size breathing hole and then start sticking their fingers in every lump and bump on my of my face - including my eyes.
Once satisfied with a good tight fit they wait for the goo to harden giving an additional poke every now and then for good measure. Once fully hardened they take a set of CT scans and then mark up the mask with various target symbols (for the laser pointers).
The newly created mask (anybody seen the movie Hollow Man?) is then unclamped and gently ripped of my face and thus removing any need for a shave today (shame about the beard though).
They then take my photograph (I guess so they can all have a good laugh later) and send me on my way.
A thoroughly unpleasant experience (and remember I had Brain Surgery 3 weeks ago).
I wonder what they do with claustrophobics, use opaque plastic?
Wednesday 19 September 2007
The Chemo Man (Oncologist)
Today's appointment with the Oncologist responsible for my Chemo dosage didn't really tell me anything I didn't already know, but I guess it was nice for him to take the time out.
I'll be taking Temozolomid (trade name TEMODAL) which thankfully comes in nice colour coded tablet form. In order to calculate the dose they take your weight and height and work out your body surface from that (mine is 2.0 square meters)
For the time I am having radiation therapy I'll get a dose of 75mg/sqm per day (150mg)
1st post radiation cycle starting 4 weeks later I'll get a dose of 150mg/sqm (300mg) for 5 days
2nd-6th 28 day cycles I'll get a dose of 200mg/sqm (400mg) for 5 days
And rumour has it they keep going until it stops working or they try something else.
Summary: They stuff me full of Toxic stuff for as long as I can take it
If you want to know how toxic see http://www.fda.gov/cder/foi/label/2005/021029s008lbl.pdf
My current plan is to see how well I'm doing after the concurrent phase and then try and get some extra poisons added (high dose Tamoxifen and Thalidomide) if I feel up to it.
I'll be taking Temozolomid (trade name TEMODAL) which thankfully comes in nice colour coded tablet form. In order to calculate the dose they take your weight and height and work out your body surface from that (mine is 2.0 square meters)
For the time I am having radiation therapy I'll get a dose of 75mg/sqm per day (150mg)
1st post radiation cycle starting 4 weeks later I'll get a dose of 150mg/sqm (300mg) for 5 days
2nd-6th 28 day cycles I'll get a dose of 200mg/sqm (400mg) for 5 days
And rumour has it they keep going until it stops working or they try something else.
Summary: They stuff me full of Toxic stuff for as long as I can take it
If you want to know how toxic see http://www.fda.gov/cder/foi/label/2005/021029s008lbl.pdf
My current plan is to see how well I'm doing after the concurrent phase and then try and get some extra poisons added (high dose Tamoxifen and Thalidomide) if I feel up to it.
Thursday 13 September 2007
Radiation Oncologist Appointment
Had the first appontment with my Radiation Oncologist today who explained how the Radiation Therapy portion of my treatment will work.
I am going to receive "conventional" external beam Ionizing Radiation (X-Rays) using a method called Conformal 3-D. This is where they focus the beam at the tumour area and a small margin (in my case 3cm). They also come in from different directions in order to reduce accidental "treatment" of good brain.
The way radiation therapy is suppoesd to work is quite neat, it disrupts the DNA of the fast reproducing tumour cells while leaving the healthy cells mostly OK. Normal cells are also better at repairing any damage from the radiation than tumour cells. This repairng capability is helped along by breaking up the treatment (fractionation) over 6 weeks.
I will receive 60 Gy (Grays) of radiation which is considered to be the maximum dose that a human can safely take (radiation is cumulative) at 2 Gy a day in 30 sessions for 6 weeks.
In order to plan my treatment I'll have to come in for a planning session next week. This will involve making a mask for me and taking CT scans to position the tumour in relation to the mask.
Likely short term side effects from this treatment are tiredeness, soreness and hair loss around the beam entry points.
I wish this wasn't taking so long, I just want to get going before that little bastard gets much bigger.
I am going to receive "conventional" external beam Ionizing Radiation (X-Rays) using a method called Conformal 3-D. This is where they focus the beam at the tumour area and a small margin (in my case 3cm). They also come in from different directions in order to reduce accidental "treatment" of good brain.
The way radiation therapy is suppoesd to work is quite neat, it disrupts the DNA of the fast reproducing tumour cells while leaving the healthy cells mostly OK. Normal cells are also better at repairing any damage from the radiation than tumour cells. This repairng capability is helped along by breaking up the treatment (fractionation) over 6 weeks.
I will receive 60 Gy (Grays) of radiation which is considered to be the maximum dose that a human can safely take (radiation is cumulative) at 2 Gy a day in 30 sessions for 6 weeks.
In order to plan my treatment I'll have to come in for a planning session next week. This will involve making a mask for me and taking CT scans to position the tumour in relation to the mask.
Likely short term side effects from this treatment are tiredeness, soreness and hair loss around the beam entry points.
I wish this wasn't taking so long, I just want to get going before that little bastard gets much bigger.
Wednesday 12 September 2007
One Birth, and a Death at a Funeral
Went out to the cinema in Zürich tonight with Carol and a friend of ours to see the movie Death at a Funeral, highly recommended to anybody who likes typically British farce (Frank Oz directed and shows his heritage). Funny how people think I would not like to go to movies with death and funeral in the title...
After the cinema we went to eat Italian and just before 10pm while waiting for the train home we got a phone call from my daughter saying her waters had broken, so we had to change destination to go and pick up our grandson Leon as it was planned for him to stay with us while Kayleigh was giving birth. We got to their place at about 10:45 and Kayleigh went straigt into hospital and at 11:52 she gave birth to a beautiful baby girl - Tasija (from Anastasija).
No hanging about with the Gardiner-Smiths (even when they're Mosers :-)
Picture is Leon, Kayleigh and Tasija, aren't they gorgeous.
It's feels so good to be alive.
Monday 10 September 2007
Seizure at 140bpm
On Sunday Carol and I took a 12km walk along the ridge of the Heitersberg (on which we live) with no no little events. so I thought I'd give the Exercise bike a try today, but keeping the heart rate at 140bpm.
Just as I thought everything was going to be OK (after 25 minutes at 140bpm), a very mild seizure hit home.
Major Depression... Need to talk to the doctors about increasing the dosage.
Just as I thought everything was going to be OK (after 25 minutes at 140bpm), a very mild seizure hit home.
Major Depression... Need to talk to the doctors about increasing the dosage.
Friday 7 September 2007
Seizure at 150bpm
Since they fine tuned my anti-seizure medication I hadn't had a focal seizure in 10 days, now they are back.
I decided to do some fitness training today because I have let exercise go to the wall in the last month. We have a little fitness room in the cellar with a treadmill, a fitness bike, a rowing machine and fixed and free weights. I thought I'd hit the treadmill today. I normally do aerobic exercise at around 150 heartbeats per minute.
After about 10 minutes getting up the to pace and then a further 10 minutes at the target rate, the now familiar prickling sensation in my right hand arm started. I stopped exercising immediately but, of course, it was too late and I had to wait for the thing to finish.
This depressed me no end as I have done regular aerobic exercise for years not just for fitness, but for the high from the adrenalin. Now it looks like I am to be denied that as well.
I decided to do some fitness training today because I have let exercise go to the wall in the last month. We have a little fitness room in the cellar with a treadmill, a fitness bike, a rowing machine and fixed and free weights. I thought I'd hit the treadmill today. I normally do aerobic exercise at around 150 heartbeats per minute.
After about 10 minutes getting up the to pace and then a further 10 minutes at the target rate, the now familiar prickling sensation in my right hand arm started. I stopped exercising immediately but, of course, it was too late and I had to wait for the thing to finish.
This depressed me no end as I have done regular aerobic exercise for years not just for fitness, but for the high from the adrenalin. Now it looks like I am to be denied that as well.
Wednesday 5 September 2007
Telling the Family
A few years ago the company I was working for was downsized, and I had the job of laying off a few of my team. Until today I looked back on that as the most painful job of my adult life.
Today's job was infinitely more painful, the job of telling my family the truth about my disease, and the prospects for the future. Needless to say it was a very tear filled evening.
I think today is the first time I've really understood what it means to have cancer. I guess there are going to be some more days like this.
Today's job was infinitely more painful, the job of telling my family the truth about my disease, and the prospects for the future. Needless to say it was a very tear filled evening.
I think today is the first time I've really understood what it means to have cancer. I guess there are going to be some more days like this.
Diagnosis & Treatment
Carol and I were a little suspicious when the Neurologist ask us to come into the hospital to get the diagnosis news rather than get it over the phone. So we quietly drove the 35km to the hospital to be told the bad news.
Essentially I have been diagnosed with the worst kind of Brain Tumor a Glioblastoma Multiforme with a survival rate of 25% at 2 years (with treatment). These tumours are incurable and the only hope is to slow down their growth with therapies such as Radiation and Chemo. It is most likely that this will kill me. That is quite a lot to take in.
The rest of this posting is the technical details of the diagnosis:
Diagnosis: Glioblastoma Multiforme (malignant grade IV astrocytoma)
In order to get to this decision both cell pathology (histology) and tumour behaviour were taken into consideration
Pathology reported that all tumour cells were from brain material (primary tumour) and indicated a low grade astrocytoma with high grade areas found in one of the four samples taken during the biopsy. While Pre-surgery MRI's show that the tumour has pretty much DOUBLED in size in the 19 days between scans. This rate of growth is normally associated with high grade tumours.
Treatment:
Given the combined evidence of a Glioblastoma Multiforme , the tumour board decided to recommend standard treatment accordingly. This consists of 6 weeks of conformal 3D Radiation therapy to a total dosage of 60 Gray (maximum allowable dosage) concurrently with Temozolomid Chemo therapy followed by a further 6 cycles of Temozolomid (1 week in every 4) for the next six months.
Treatment cannot start until I have recovered from the Biopsy (basically until the scar has healed) because both Radiation and Chemo affect the healing process.
Tuesday 4 September 2007
Preliminary Diagnosis
Just before I was released, a junior Neurologist came to give me my release report, along with the preliminary diagnosis from 3rd September,
Tumour appears to be a malignant Astrocytoma grade III.
The full diagnosis would be given to me on 5th September following a meeting of the hospital's Tumour Board (a group of senior peers from Nuerosurgery, Nuerology, Oncology and Radio-Oncology), who would agree on a diagnosis and proposed treatment.
Tumour appears to be a malignant Astrocytoma grade III.
The full diagnosis would be given to me on 5th September following a meeting of the hospital's Tumour Board (a group of senior peers from Nuerosurgery, Nuerology, Oncology and Radio-Oncology), who would agree on a diagnosis and proposed treatment.
Monday 3 September 2007
Last Day in Hospital
I've been told I can go home tomorrow.
best news since this all started.
When I was admitted for my operation, I volunteered to be a case study for a student nurse (I was picked through a long selection process that involved figuring out who was the only person admitted on the day she came on duty).
Most of this just meant she could get access to all my care reports and stuff, but as I am leaving tomorrow I had to spend an hour answering a lot of questions for a fairly extensive study on the psychological effects of being in hospital, and how your illness had affected your emotion and philosophies on life. Much to my surprise I got quite tearful a couple of times during the interview, and once again I realised how expressing emotions is really hard in a language (German) that is not your mother tongue (English).
The student nurse was very sweet and understanding, I think she may have chosen the right profession.
best news since this all started.
When I was admitted for my operation, I volunteered to be a case study for a student nurse (I was picked through a long selection process that involved figuring out who was the only person admitted on the day she came on duty).
Most of this just meant she could get access to all my care reports and stuff, but as I am leaving tomorrow I had to spend an hour answering a lot of questions for a fairly extensive study on the psychological effects of being in hospital, and how your illness had affected your emotion and philosophies on life. Much to my surprise I got quite tearful a couple of times during the interview, and once again I realised how expressing emotions is really hard in a language (German) that is not your mother tongue (English).
The student nurse was very sweet and understanding, I think she may have chosen the right profession.
Sunday 2 September 2007
The Rhythm Continues
1st/2nd September
The rhythm continues, and I feel like I want to go home.
Keep getting told off for not resting enough. Spend as much of my days as possible on the balcony reading in the sunshine (but I have to wear a hat to keep my plate out of direct sunlight otherwise it gets hot).
I'm on the last book of Otherland by Tad Williams, and I'm trying to finish it before I get out of hospital. The i-pod is on random and I've started to make a list of my favourite songs of all time. It is going to be a very long list.
It is starting to sink in that my life is likely to be a lot shorter than I expected. I'm a lot less shocked by the prospect than I thought I would be.
The rhythm continues, and I feel like I want to go home.
Keep getting told off for not resting enough. Spend as much of my days as possible on the balcony reading in the sunshine (but I have to wear a hat to keep my plate out of direct sunlight otherwise it gets hot).
I'm on the last book of Otherland by Tad Williams, and I'm trying to finish it before I get out of hospital. The i-pod is on random and I've started to make a list of my favourite songs of all time. It is going to be a very long list.
It is starting to sink in that my life is likely to be a lot shorter than I expected. I'm a lot less shocked by the prospect than I thought I would be.
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