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.

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.

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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.

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.

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.

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 Scar

Apart from the usual rhythm of the ward, the only notable thing today was the changing of the dressings on my head. Why? because it is the first time I got to see my new scar!

Not really competition for Frankenstein's Monster, but still pretty substantial, and the monster didn't have a titanium plate to cover any of his holes (not that you can see it).
(Note: Picture is from about 3 weeks later and as such a little less bloody)

Recovering from surgery - Day 1

Woke up still in intensive care but felt surprisingly OK.
Doing a quick check list of everything I discover that apart from a mild sore throat (no doubt from the tubes that had been previously stuck down my throat) a slightly sore head (obviously) and that bloody catheter I really didn't feel too bad, and I was HUNGRY!

The nursing staff allowed me to sit next to the bed for breakfast. If I had known how much hassle it was going to be to manoeuvre all of the cables and tubes I might not have chosen to do so. But once installed, I tucked into a good continental breakfast.

The morning rounds (with obligatory hordes of students) appeared during my breakfast and it was obviously time for the chief's little joke. "Ah, can anybody tell me what indication of total recovery from surgery we can see in Mr. Gardiner?" and after a few seconds silence "... he is eating breakfast. Lets move along then"

After breakfast I was told I could return to the ward (maybe it wasn't a joke) and the process of disconnection started. On my insistence the catheter was first to go, and once all the pipes, cables and leftover connectors from yesterday's operation had been removed a porter was called to wheel me back to the ward. Only the solitary saline drip remained.

I have a theory about saline drips that they serve no medical purpose whatsoever, except to help you tell apart fellow patients and medical staff.

On the ward the routine of Take Meds, Blood Pressure. Eat, Snooze, Read a bit, ... fell back into its rather comforting rhythm only interspersed with the joyous moments of visitations of friends and family from outside.