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.

 

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”.

Appointments at Addenbrooke’s Hospital Cambridge today for high resolution MRI scan, and for pre-op tests. What a wonderful professional hospital and staff. NHS crisis? What crisis!

Action

Brain operation booked for Monday July 31st, with high res scan a few days earlier. I’m delighted with progress.

Excising times!

Today I met the neurologist at Addenbrookes hospital, Cambridge, and he suggested (and I agreed) to surgically remove the main tumour. I will soon have another MRI to precisely define the location & shape of the tumour, followed by surgery in 2-4 weeks time. The tumour will then be biopsied to determine the subsequent treatment.

This is good progress within 15 days of my initial diagnosis. The steroids have dramatically reduced the symptoms, so I currently have reasonable mobility.

When Time began

My New Life began mid-afternoon on July 28th when my brain scan revealed 2 tumours. Now little more than a week later I am planning with a remarkable clarity (my spreadsheet has 9 tabs already!). Vast numbers of little concerns from my past have just evaporated. It’s action time!

Today Lavinia and I are going for a long weekend in Kent, to a family wedding and reunion. It was arranged long before my New Life started, and based on the initial speed of my worsening symptoms, I was initially fearful that we would have to cancel. Thankfully the steroids have temporarily reversed matters, and I am raring to go. I’m so looking forward to a level of emotional intimacy with my family.

Life is Rich

Its a beautiful day.

Condition Update

This morning the Doc called to give me the results of my Body CATscan: There was no indication of the location of a primary tumour in my body, (and consequently no secondaries there). It may be too small to spot on the scans.

Oncology team will meet at Addenbrook’s Hospital, Cambridge tomorrow Thursday, to discuss way forward. I will receive NHS treatment at Addenbrook’s Hospital. They will decide whether to biopsy my Brain “walnut” of just go ahead with radiotherapy (and chemo?), depending on the risks.

My reaction:

Relief that I do not immediately require body surgery, and that I should not expect immediate problems from body causes.
Relief that the body scan has not revealed multiple Secondaries.

It’s a beautiful day.

Now to locate the source

I had a full body CATscan today, the purpose to locate the primary tumour, which can then be biopsied to determine a prognosis and strategy. Although I returned home with copies of the scan images on CD, I will wait until the neurologist reports the conclusion, and not attempt to identify the critter myself! I will post more when I know more.

Meanwhile Lavinia and I are booked on a long weekend in Rochester, Kent, for the wedding of a cousin of mine, which will be a great opportunity to catch up with various family members. Precious times.

A Difficult Week

Monday:

Frightened by my worsening condition, I booked an emergency MRI scan on my lumbar spine at a private clinic in London, and with Lavinia’s help I took the train. The scan was quick, and I had the emailed report by the time we got back home. I was exhausted!

I had expected the report to identify which spinal spur or disc was pressing on the nerve, and hence which would have explained my symptoms, but none was evident. It was suggested that a spinal surgeon might spot something missed in the report, so I urgently booked to review the scan with one for the Thursday.

Tuesday:

Some time ago I had booked to attend The Human Mind Conference, 27-29 June at The Møller Centre, Cambridge, and had been very much looking forward to it. So despite my increasing difficulties in walking, I took the train and a cab to the first day of the event. The talks were excellent, all broadly supporting the ideas in my book Bottleneck – Our human interface with reality. Walking round the venue was difficult however, my conspicuous dragging foot making noisy squeaking sounds as it scraped along the polished floor. I was clumsy and slow, and must have appeared odd to many.

What has happened to my writing?

A Break-out session had been arranged (to discuss important areas for future research). Each group of half a dozen delegates sat round a table with lists of topics on which to score and comment. As I attempted to write I was shocked to see that my usual untidy script was almost completely unreadable, and my hand began to shake unusually. One of the group suggested that we needed a scribe for the flip-chart, but that their own writing was too untidy so we needed a volunteer. At this point everyone else, including me, insisted that ours was worse, but I clearly had won the race to the bottom that day. I enjoyed the interaction but was very disturbed by my inability to write, based on the assumption of a trapped nerve in my lower back.

By the end of the day, I felt too exhausted to join the arranged meal, and set off home on the train, dragging my heavy foot. I had a scary encounter in an otherwise empty carriage, with a very drunk hoodie with Tourette’s syndrome, who shouted a sequence of aggressive obscenities until staggering out of the train at the stop before mine. It was probably fortunate as my exhaustion might well have made me sleep and miss my stop. Reluctantly I decided to abandon the remainder of the conference.

Wednesday: Alarm Bells:

By now my medically knowledgeable friends who had read the spine scan report, and my son, were all urgently persuading me that I needed to see a neurologist, and that it might not be a back problem at all. To Hell with the expense, I managed to book an appointment at the local private hospital. Very fortunately the Dr. was able to see me straight away. He quickly confirmed that it was not a spinal problem and immediately sent me for an MRI brain scan. So two hours later all was revealed:

The consultant showed Lavinia and I the successive slices of my brain scan, starting from the bottom. As he approached the top, two bright objects appeared, the larger “Walnut sized” one he said was a tumour right in the middle of the part of my Left brain responsible for my Right side locomotion. This was surrounded by a much larger area of swelling. The second bright object was much smaller and was “not in an important part of my brain”, however the very fact that there were two tumours indicated that they must both be Secondaries of a Primary tumour somewhere in the rest of my body which has gone unnoticed. To find where it is located, we immediately booked a full-body MRI scan for this coming Monday.

He told us that they would need to biopsy the Primary before knowing a diagnosis, and that radiotherapy would be used to shrink my”walnut”. His mood was serious, no attempt to put an optimistic spin on my predicament. He prescribed some steroids to reduce the swelling and told me that they might provide a brief temporary honeymoon period of reduced symptoms.

I felt surprisingly calm and all my emotional concern was for how upset my nearest and dearest would find the news. By chance I had recently posted a poem on this website describing an earlier encounter with death (Dying to Live) which I had always felt helped me with the truth about my own mortality. We returned home and called my son and daughter with the news. They immediately came round to support me, and we enjoyed a delicious Indian takeaway meal together, with an excess of dark Gallows humour (it’s my Yorkshire way).

So that’s it I have Cancer with Secondaries. Now for a forward plan.

Thursday

Phoned my two sisters. Informed my immediate neighbours. Made phone calls to Occupational Health Dept, and arranged physio visit for Friday.

Friday

Physio spent time showing me exercises. My dead Right leg refuses most mental instruction.