I now have an elecric (hospital) bed), which goes up and down, etc at the touch of the control’s. Taķes a bit of getting used to, but I’m learning.
Antibiotics
Having struggled with a painful Eustachian tube/pharyngitis all last week, I finally got to see a nurse at the surgery in the hope getting some antibiotics.
Unfortunately the nurse insisted that it was Viral in her enthusiasm for preserving the global effectiveness of antibiotics. Fortunately Lavinia convinced the rotor to give me a pack of antibiotics just in case (nominally to treat my infected fingers), assisted by my briefly breaking down with sheer frustration at the nurse’s intransigence!
So last night in desperation I finally began to take the antibiotics, and Voila! I feel great today! So my hunch was correct. It’s a lovely day out there, feeling so blessed again.
To Hell and Back!
It’s been a crazy week: Dealing with a throat infection (been disease-free so far, apart from the Cancer), having my hair tidied at home by lovely Jeanette (who has cut my hair for decades) after the radiotherapy hair loss (less of the “mad professor” look now, and Wow! so that’s the shape of my head).
Friday night was the date of the annual Lab reunion, “The STL Quarter Century Club”, which was once just for those fortunate enough to have spent 25 exciting years at Standard Telecommunication Laboratories in Harlow, Essex, UK. Fortunately the event is now open to absolutely anyone who at one time enjoyed working there.
From the age of 21, I spent 38 happy years of my life at the Labs, developing Optical Fibre Communication (“retiring” at the end of 2004 to focus on my new passion: the implications of the incredibly limited rate at which humans can absorb New information from the present moment). So when my rapidly developing tumour was first diagnosed (end June, and biopsied end July), I did not dare to anticipate being able attend the event.
So on Saturday night I got smartly dressed, put on my STL QCC tie! and spent a delightful evening mixing with all my ex colleagues. It felt a great way to celebrate the end of an exraordinarilly exciting (and with hindsight productive) period of my life.
So home to bed, and down into into Hell!
The Steroids and the anticoagulant injections, make me prone to nosebleeds. At midnight the blood was just pouring out so fast that I dare not lay down, so stayed sitting upright in the cold for the next 5 Hours, bleeding heavily and continuously despite all my attempts to stem the flow. Finally I accepted defeat and my dearest Lavinia managed to get me dressed to take me to Harlow hosital A&E.
We naively assumed that A&E departments are always very warm, so I staggered out to the car in the dark, only to find the car completely frosted up! The temperature was 10 degrees colder than anticipated, but too late to correct my attire, we needed to press on, this was an emergency!
Arriving at Harlow hospital, it soon became apparent that the entire reception area was unheated, due to the unanticipated sudden drop in temperature. After a few hours of hypothermia Lavinia managed to negotiate for me to sit inside where it was considerably warmer.
By chance the wife of one of my ex work colleagues (who had sat on my table the night before) who works as a nurse there, had spotted my name on a list of patients waiting to be seen. She found some extra blankets for me and I was soon sweating with relief!
Five hours later I got to see a doctor. By then the bleeding had become far more intermittent. The doctor prescribed some mysterious magic ointment, and we set off home.
Exhausted from 35 hours without sleep, I fell into bed, and into a deep sleep for the next glorious 6 hours. For someone used to waking every hour and a half to pee, this was absolute luxury! Woke very much refreshed, and started to blog!
I want to say just how much I depend on Lavinias support to get me through these times. She must be exhausted from being continually at my beck and call. I’m humbled by her Love and her patience with me.
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.
Problem getting out of chairs
Just acquired a tilting chair, Brilliant!
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.
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.
Sorted
Biopsied and back in the ward with the missus’. Will know about the options in 11 days time when results will be discussed. The operation was described in my notes as “Stealth guided Craniotomy”. Like it!
My Situation
On July 3rd I was diagnosed with tumours in my brain. A Biopsy at Addenbrooke’s Hospital Cambridge revealed that I have a single glioblastoma multiforme. With radiotherapy treatment the mean life expectancy is estimated to be “6 to 9 months”.
Called back to Addenbrooke’s hospital today for a repeat blood test as low platelet count discovered in Tuesdays sample (result now confirmed). Admission now will be Sunday for transfusion, and op on Monday.
Met my surgeon to discuss action based on results of Tuesday’s higher resolution MRI scan. This has revealed 3 tumours, (and suggests it might be a single more distributed tumour). To minimise the risk to my Motor Cortex, he will not touch No.1 tumour, but will instead biopsy the second one, as this is easier to access. I might be out on Tuesday evening.
I’m very impressed with the professionalism of all we have encountered.