No longer Equals – becoming a Carer

The first appointment with the brain surgeon & some key facts about brain cancer

As soon as Mick was diagnosed, the dynamic between us changed. We were no longer equals playing similar roles as parents and husband and wife. Mick became a patient focused on survival and I became his Carer. He was still my husband and the father of my children but now we had different priorities and goals and outlooks. He had short term goals. I had to have back up plans. I had to remain “level headed”.

Our appointment with the brain surgeon was sobering. We both heard different messages. Mick’s main focus was to get through the operation and remove the cancer. I understood that.

I knew that my role as a carer was to provide an additional set of eyes and ears when meeting with medical professionals. I needed to listen to all the advice provided about risks, prognosis and next steps.

Mick found it very hard to take in all the facts. His cognition was impaired by the brain cancer. And secondly it is unbelievably scary to hear that someone will be operating on your brain which is the control centre of whole your body! How could you possibly take it all in?

After the appointment, Mick relied on me to fill in the gaps of information that he could not remember and to check that he had understood things correctly.

I had learnt at work that when you are communicating something of significance it is important to summarise the key messages.

Our key messages for that day were:

  • He had one of the best surgeons who had cleared his schedule to operate the next working day.
  • He had the most aggressive form of brain cancer – Glioblastoma, also known as glioblastoma multiforme (GBM).
  • The cancer seemed to be in only one clump so surgery would be simpler than it can sometimes be.
  • It was in the parietal lobe. Surgery in this area would mean he might be paralysed on the right side and unable to walk or use his right hand. (He was six foot four, a big man. A wheelchair might be necessary after the operation)
  • Surgery in the parietal lobe might also result in a loss of the mathematical ability to do any calculations and add numbers. – This was key for Mick’s work in finance.
  • There was a 1% chance of dying from the anaesthaesia. Mick did not find that very reassuring because  he already felt extremely unlucky to have brain cancer.

There was one point of discussion that really spun Mick and I out – and that was when for a little while the surgeon considered keeping Mick awake for the operation so that he could keep talking to him and ascertain if he cut into certain parts of the brain whether Mick could still add numbers, move his limbs etc. We were relieved when he decided that actually general anaesthetic would be ok!

Mick and I had always been honest and frank with each other. So when he and I discussed  the appointment together he was comfortable with these key points.

However there were more key messages that I took away from that appointment that Mick was not ready to discuss. These were

  • There is no cure for glioblastoma brain cancer.
  • Successful surgery would “buy” us some time. The worst case was that he would die in six months and the best case was that he would survive for five years. Hardly anyone worldwide was known to have survived for five years.
  • The cancer could spread quickly to other parts of his brain and affect his personality, his emotions, his cognition, his physical movement.
  • The swelling in the brain and growth of cancer cells meant that Mick was at risk of having seizures at any point in time. He would not be able to drive. There were greater risks with swimming and carrying our children.
  • There were next steps available to prolong Mick’s life – radiation and chemotherapy. Mick would need to undertake these as soon as possible and they would co-incide with the last few months of my pregnancy and then the birth of my daughter.

These key messages were overwhelming and I missed being able to discuss these key points with Mick. I was lucky to have my parents as support but my confidante and ally was no longer available. I couldn’t tell him my frank assessment and concerns. We had always shared decisions. I was still his main confidante and consultant. But he was no longer mine.

I understood his approach. His single minded determinedness. I never asked him but I think he understood mine. Deep down I felt a part of him knew that my parents and I were pragmatic and that I needed time alone with my parents to discuss some things that he could not face or prepare for.

Our mutual respect for each other continued.

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