So far so good. Told to expect fatigue to develop slowly. Actual X-ray exposure time very short.
Dancing in the Light!
Thank you all so much for enabling me to “dance” with you all in Cambridge last night. Being able to see the space transformed my ability to balance. Huge thanks to Jason, and the team, and everyone else, for an illuminated evening I will never ever forget.
Acceptance of Mortality
My disease is mutifocal glioblastoma, a terminal condition. Instead of localised (and isolatable tumours), this is a distibuted tumour, making it more difficult treat using focussed radiation. The median life expectancy is 6 months with radiotherapy.
When people hear the news, their reactions fall into one of two categories:
- Denial, because they have yet to encounter the truth of their own mortality. They need to do something to fix me, to stop me dying. This is understandable in their context.
- Acceptance of death and birth as the two ends of the same journey, to be celebrated equally. The recognition that I am going to die, and that the quality of my remaining time is what is most important to me.
Wedding Anniversary
Yesterday Lavinia and I celebrated the Nine years since we were actually married, and more than a quarter Century of a wonderful life together, (by coincidence yesterday would also have been my Father’s 100th birthday too, but he only lived until the age of 57!). There are many less fortunate folk, so I can only feel gratitude for the years we have shared together.
August 18th update
Excellent meeting with Addenbrooke’s radiology team. Two whole hours with various medics, all of whom gave me great confidence that they understood my condition, and especially how to treat it to maximise my quality of life in the forthcoming months.
The plan is to go ahead with radiotherapy. Next Friday I will come for a “mask” fitting and a further scan to precisely define the tumour treatment area, and maintain my head in alignment during the radiotherapy exposure time. The following 2 weeks I will come for 6 radiotherapy sessions, 3 per week. This may well cause some additional loss of motor functions but should slow the overall deterioration in the longer term.
I’m hoping not to lose control of my right hand (Jokes to be inserted here!). I am led to expect fatigue towards the end of the radiotherapy sessions. So now I have a week to get on with life again, and feel so blessed to live in a country where outstanding healthcare is provided at zero cost when required.
Biopsy identity confirmed
Today’s meeting at Addenbrookes Hospital has confirmed that it’s a single but multifocal glioblastoma. Probably a primary. Life is good. I plan to squeeze the last drop from it.
Later today we will confirm the identity of my hitch-hiker
During my afternoon appointment with the consultant at Addenbrooke’s Hospital later today, I am expecting the results of my biopsis, with a prognosis. By chance a package arrived at home yesterday with a CD of the last MRI scan prior to the biopsy. I had requested this (£10 only, thanks NHS), as I knew that the new scan offered higher spatial resolution than the earlier one at Rivers hospital, and might also give some indication of tumour progression.
To my surprise the CD of “interesting” images came with a radiological report, the last line of which stated: “Progression of two enhancing lesions in the left frontal lobe, most likely multifocal glioblastoma”. So, remember that this is before the biopsy results, but it now seems that Senator McCain and I might have something in common, (not a lot!). It also suggests that rumours of a third tumour site were exaggerated.
So what do we know about my new running mate(s)? Well it would suggest they are both parts of a single linked but distributed tumour, i.e. they are both part of the same growth. The good news is that this cancer is usually confined to the brain, so if confirmed, I should not expect to have the rest of my body invaded by the “body snatchers”!
Now keeping in mind my lifetime mantra that “no-one gets out of here alive”, what might be the prognosis for my life expectancy?
“The most common length of survival following diagnosis is 12 to 15 months, with fewer than 3% to 5% of people surviving longer than five years. Without treatment, survival is typically three months. It is the most common cancer that begins within the brain and the second most common brain tumor, after meningioma. About 3 per 100,000 people develop the disease a year. It most often begins around 64 years of age and occurs more commonly in males than females” – Wikipedia
Other information: “Primary glioblastoma tends to occur in older adults (> 50 years) and appear quite suddenly (less than 3 months from initial symptoms to diagnosis)”. “Patients treated with this standard therapy tend to survive for approximately 12 months. Without treatment, survival is about 3 months.”
So now I’m looking forward to the actual biopsy result, plus a treatment plan going forward. Life is still rich, and increasingly precious.
Back home
Great treatment.