The three tenors
Had a wonderful first night in the hospital listening to the three tenors entertain me.
Such a treat and to get this for free as a public patient is a real treat.
My Unplanned Sabbatical
A journey with follicular lymphoma
Archive for the month “February, 2012”
Chemo
I am currently in an oncology ward at the Monash Hospital. My treatment was meant to start this morning but having arrived at 8 am as requested I found that I had no bed and was sent home. That is the system I guess.
I received a call to advise that a bed was now free (I hope no one died) and to present at 2 pm. So I did. So compliant.
It was a bit late to start today so I have a wonderful stay overnight. I am in a ward of four. The three gentlemen with me are not in great shape which makes this a bit yuk. I am hiding behind my curtain trying not to focus on all the noises a human body can make. I still feel great so it makes this more difficult. Maybe if i felt crap it would be easier.
Anyway, tomorrow they start.
Two days of Chemo and a cocktail of other stuff. Will be an experience.
I also set myself up to do a bit of work. I agreed to review the Rio proposal story board and was looking forward to it. I was also keen to see how this new Windows 4008 etc etc would work. Well it didn’t. I could not connect to the network. So I had to send it back into ITS for some loving.
“More farewells than John Farnham”
Apart from dealing with family, planning on taking a break from work was/is the most difficult aspect I am yet to deal with. This is not because of the way in which my colleagues and the firm has responded. They are all wonderfully supportive and made it easy for me.
I have just found it incredibly difficult to let go and walk away for a while. What I do is such a big part of who I am, it gives me focus, challenge and enjoyment. It can also disappoint and shit me but this is far from the norm.
The team I work with have just seamlessly taken on more and got in with it. It has been pleasing to watch.
I decided that I would finally let go and leave after spending a final 2 days at a partner leadership retreat. It was a good 2 days and I am pleased I used this as the time to call it.
A good and close friend also suggested that “I have had more farewells than John Farnham” and it was time to just go and get on with it.
It made me laugh. She was so right.
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 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 Biopsy, the PET scan and Bone Marrow
All was moving with such pace. Final week before Christmas and all that this can mean. I had shared my news with my partner group and was getting fantastic support and understanding. The same can be said for the Deloitte senior executive. I have been given freedom to deal with this matter and to focus on getting better.
I can say I love a good premed! That cocktail of drugs is something I could get used to. Unfortunately, that feeling is short lived and then you are totally out of it. Biopsy of the lymph gland went well. Pathology confirmed Follicular Lymphoma. It was grade A – indolent (very slow growing). It appears confined to 3 lymph nodes in my chest – so it was stage 3.
After spending the night in the hospital I was discharged on the 20th and went straight to Moorabbin for a PET scan to confirm if this cancer was anywhere else. Feeling a little banged up I had my first Tom Hanks “Philadelphia” moment. Alone in a small room, the nurse connects me to a machine that will pump radioactive glucose into my system, I am to stay still for 1 hour to allow it to work its way through me before the scan. Before she leaves she turns on the CD of an unknown opera (unknown to me). As the opera played I was thinking about how much had happned in such a short period of time. A little overwheleming.
The results of the PET scan were very good – no referred “hot spots”.
The final test to determine staging (how far the cancer had spread) was a bone marrow biopsy – a rather nasty little procedure where a core sample of bone and marrow is taken from your hip.
This was scheduled in January.
Dr G advised to enjoy my Christmas and to relax as best I can. We had been through allot in a short period of time and it was time to catch our breath.
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.
Me
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My Unplanned Sabbatical 