My Unplanned Sabbatical

Where do I sign

I had an appointment arranged for me with a Professor focussed on treating  follicular lymphoma to discuss my treatment options.  He was very good to talk to. He was also young, fit and a keen cyclist who had ridden behind the tour de France and the Giro di Italia which somehow made him more credible to me. Weird I know.

He confirmed that if I was given the option of this trial I should grab it hands both hands. He was also associated with the trial which he made clear to me at the outset.

I also spoke to an experienced Dr who is a friend. He also confirmed I should try getting accepted on the trial.

So accept I did.

Clincal Trial

The results of  the bone marrow biopsy were good.  All clear! That was a good day. So it was confirmed that I have Follicular Lymphoma,  grade A , stage 3.  Could be worse I guess. It’s not testicular cancer, melanoma, lung cancer, bowel cancer, liver cancer, brain tumor etc all of which are somewhat nastier.

The good Dr G explained what this type of lymphoma was and how it can be treated. It was at this stage  he mentioned in passing that it was not curable, but treatable. That comment did not register for some time. I asked him how this would kill me. He was a little taken back by the question but from my perspective at that time this was important to me. It was strangely a key question as once I had an understanding of that I could somehow work backwards and choose how to fill that space and time.

He set  it out for me.

The good Dr G then suggested I should be a good candidate for a  clinical trial. This trial would give me access to what is said to be the new standard in Europe and America for the treatment of my type cancer.

I was initially skeptical. I did not like the concept of trailing anything. I wanted what was known to work and fast! He suggested I think it over and get a second or third opinion.

So I did.

“Feel the sand between your toes”

The good Dr G suggested I take a break for awhile given all that had transpired and focus on Christmas and the holidays. “Feel the sand between your toes” was his advice. I listened.

Summer break was spent in Portsea with friends and some family. It was a good time. Children relaxed and we entertained almost constantly. It was an intense and fun time. I trained harder than usual and felt great. Long bike rides with good friends, a fun run and the usual exercise regime. Great wine, good food and lots of laughter.

I read a book on surviving cancer which may have been a bit premature as it dealt with the feelings and challenges often experienced by cancer survivors after their focus on beating the disease was over. I found it useful.

On the 9th of Jan I returned to Melbourne for a procedure to determine the staging of what I have which was the bone marrow biopsy.

Telling the girls

Harder than telling the family.

They get it.

They are OK.

Telling the family

Now this was going to be tuff. We had been doing all we can to deal with this alone. Had it not been for the need for an operation on the 19th of December we had decided not to tell our family until after christmas.

The procedure on Monday the 19th forced our hand.

Fortunately (or unfortunately) it was Siena’s birthday on the 17th and we had arranged for our extended family to celebrate Siena’s birthday and the new home. So we would have all the important people in one room.

On Sunday the 18th all arrived with big smiles, hugs and kisses for Siena and the rest of us. The usual excitement of seeing a new home etc etc so the day was evolving beautifully. I keep looking over at Petra knowing that the time would arrive that we would need to share the news. Even writing about this makes me feel a little ill. We decided we would wait until after we cut the cake, sang happy birthday and then all the children would be outside playing.

It was time.

Petra was magnificent. We decided she would tell them. I thought I may not have gotten through it and was worried any sign of emotion from me would rattle my mother even further.

Without sharing to much it was the hardest thing I/we have had to sit through to date.

The word “cancer” comes with such baggage that notwithstanding what I have is treatable it takes time to cut through that baggage so as there is an accurate understanding.

That day was an important first step on letting those around us understand what we have been dealing with and will deal with. There have been and no doubt will be many more of those conversations.

No doubt

The Oncologist, the Surgeon and the move

I was able to get an appointment with a Haematologist and Oncologist very quickly. It was to be Friday the 16th of December.

It was a big week. We moved home on the 15th of December so we had been planning and executing the move, settling the kids into the new home and managing the impact of what was becoming not a great news story. We had not shared any of this with our family so understandably the demand of an extended family pre Christmas continued unabated.

The meeting with Dr G (will not share his details) was excellent. At last a quality professional. It was more a therapy session than one dealing with the medical condition. Clearly he was experienced in this area.

We needed to do a range of tests to confirm the preliminary diagnosis. This required a biopsy. Given that the tumour was deep in my chest the preferred option was a surgical biopsy. It was 11.00 am Friday the 16th, he suggested I see a surgeon that day, our girls were at school and had to be picked up at 3.00 pm. They were keen to get home to try their new pool!

Appointment made for 5.00 pm that night. Some fancy phone calls and the girls were looked after while went to meet the surgeon. Mr C.

Mr C was very good. Finally showed me the details of my CT scan where for the first time I saw the large tumour happily growing in my chest. It was near my heart, behind my stomach and lungs. Impressive I thought.

We agreed a surgical biopsy was the way to go and I was booked in for surgery the following Monday morning, the 19th of December.

“Quite a lump”

The senior radiographer with people skills honed in Guantanamo Bay left me in reception to arrange for a CT scan. The clinic was fully booked so my first opportunity was the next morning.

I left and drove to work.

I lasted 2 hours in the office.

I returned home to share the experience with Petra. I was feeling a little flat and concerned and started to contemplate all that could be wrong. I also discussed it with a close friend at work to get some perspective.

The CT scan was an uneventful experience.

The following day the results were provided to my GP with a preliminary diagnosis of  retroperinial lymphoma.

My GP was not in so it was left to a locum to deliver the news. Another great day for the medical profession.

This gentlemen could not use the software to locate the report, then read the report out to himself as he adjsusted his bifocals and then during this little performance he said “thats quite a lump” and then kept on reading.

I had to laugh and asked if i could please read it myself. He handed a printed out copy to me and said “we better refer you to an oncologist”.