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Big day – “final” review

Today I had my “final” review at Addenbrooke’s Hospital Cambridge, six weeks since the end of my 6 radiotherapy sessions. I invited son Paul & daughter Mary to join Lavinia and myself, so they would be party to any decisions.

A great session. The consultant answered all my questions in great detail. I confirmed that I have no interest in having a further scan to observe progress, as the only treatment option would be chemo, which I have no interest in as I want to maximise my quality of life in my remaining time. So having made a future phone appointment, I will have no further need to travel to Addenbrooke’s again.

The consultant generously offered to show my last MRI scans to Paul & Mary, explaining in some detail how my glioblastoma multiforme extends between the two main tumour focii. To my surprise, she revealed two pockets of air, created when both focii were biopsied.

I was so delighted with the quality of answers that I blurted out: “Brilliant!”, at which point Mary laughed and said “Only my Dad would consider his current situation to be “brilliant”. This caused hysterical laughter which almost let me to tears, a hilariously funny moment. I think the clarity of my situation is what helps.

After a quick check on my blood sugar, Paul drove us all home. Lavinia’s son and girlfriend arrived back from a week’s holiday, so we had quite a family gathering, followed by a delicious Takeaway.

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Been reflecting on so much recently. Prompted by Lavinia asking me what I want to fill me remaining time with, I now realise that so much of the passion in my life has been about trying to impress (Dead mother? school, peers, who knows?). My comprehensive website devoted to publicising the story of the Birth of Optical Fibre Communication was a consequence of my feeling of obligation to the community who made it all happen. As “last man standing” or one who was involved at the start (and until the end of 2014), I felt I had to do a good job, as an act of service.

A similar situation surrounds my Family History website and another site devoted to my Epworth Cutlery (my ancestors were Sheffield cutlers). All acts of service I believed.

Now so many of the past drivers in my life until seem of little interest to me. For example, photography was a passion, now holds little interest. With hindsight, so much of what I have previously filled my life with, seemed to have been targeted at getting approval from those around me, wanting to be seen as a nice or clever guy, or more fundamentally, just to be loved.

It seems that I can now give up trying to be someone worthy of being loved (above others?), and just be present. Funny how it took a whole lifetime for me to understand where my competitive side came from.

My hair loss (due to radiotherapy) seems to have stopped (mostly on my Right side for no obvious reason, as the radiotherapy was equal strength beams from each side). I can now see what shape my head is for the first time. Not a bad discovery for a 72 year old bloke!

The good news is that my condition seems to have plateaud (probably due to the radiotherapy), with little deterioration in my impaired balance. And I am gradually learning new ways of dealing with it all. Long may it continue.

My lovely younger sister and husband Frank called in on Friday on their return from a holiday, brought nice lunch to share. good to see them again.

Wonderful evening meal last night with some very dear friends, with whom I have shared some very emotional poetry with in the past. Reflecting with gratitude on the “beauty of the days gone by”.

Today I have picnic planned at the bottom of my garden down by the river, surrounded by nature. It will be good.

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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.

 

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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.