What do you mean lost? I have lived in my house for the last thirty three years been to this hospital around fifty times in the last twelve months, and I am sitting here meeting with you. How can I be lost? The meeting was with one of the hospital Psychiatrist to follow up on my blog post a couple of weeks ago about the little black dog. Where I had reached out for help concerned with my state of mind. We were about 40 minutes into the discussion when she told me she thought I was lost more than depressed. So how do you get lost in places you know so well?
This first meeting with the Psychiatrist was to see if I really was being chased or bothered by a little black dog, growing potentially into a large black monster. Then to work out potential strategies to deal with issues as they arose. That may still happen as we get closer to the results of my forth PET scan. If the results don’t look good and few treatment options remain. In the short term though it’s all about being lost.
Lost, as she put it is about my mental state given how so many life choices have either been curtailed or eliminated. When I was first diagnosed in 2016 there was a clear plan with treatment, chemo, R-CHOP, was just something to be tolerated once every four weeks for six cycles. It didn’t interfere with life and I carried on running my own business with very few changes other than losing my hair. Ok, I did suffer a bit from fatigue as well.
Back at the beginning of 2020 when it was time to begin treatment after a year of watch and wait. It was again six cycles of chemo, R-Benda, that to honest had little impact on my life. In fact I didn’t even lose my hair this time. Things only really took a turn for the worse when the PET scan at the end of the cycles showed that the lymphoma had spread not reduced. This led to more serious discussions and a change in chemo, ICE therapy, as well as serious discussions around an auto stem cell transplant.
So, getting back to being lost as it looks like I have done here. However, I thought some background was important. With the change to ICE chemo therapy, the side effects really started to kick in. Yes my hair fell out again, but also the nausea and fatigue kicked up more than a couple of notches. Suddenly my motivation for doing things lessened. I also knew that if I was going to have the stem cell transplant that I would no longer be able to carry on as a mentor for business mentors. Having worked with over twenty businesses over the previous two years it was very hard to tell the ones that I was working with that I would be unable to continue. I was very concerned that a long hospital stay and lengthy recovery period would preclude any meaningful contact.
Summer was also coming and our motorhome had been sitting rather lonely in storage for the winter period. Advice from the hospital was to keep within an hours drive from the hospital during the ICE chemo. On a good day with Auckland traffic that might just get over the bridge to the North Shore. Something of an exaggeration but certainly we couldn’t go anywhere meaningful. Then with the transplant in November and recovery in December, January we found ourselves going nowhere.
I come from something of a family of writers. My father entered a competition to write a book that was published in the early 1950’s. He used the prize money to pay for his passage to England where he met my mother and I was born. Emigrating to New Zealand in the 1971 he worked as a copywriter for some of Auckland’s largest and most successful advertising agencies. Although he started another couple of books he never finished another. That challenge was taken up by one of my younger brothers who has now published two books. His latest a non fiction book can be found on Amazon here. After a couple of years of blog writing people had suggested that I turn my hand to a full length novel. I even had an idea for a book based on a number of people I have met motorhoming. So I started writing around the time I began the ICE chemo, Sadly, after around twenty five thousand words and the time I was starting the transplant. The inspiration well ran dry, no matter how hard I try I cannot seem to get the pump started again.
So as the Psychiatrist pointed out, all the things that I have taken pleasure in doing, have stopped. Even the walking I started with Sarah has been curtailed by my low red blood cell counts, caused by the current GPD treatment, leaving too breathless after a few hundred metres to continue. So as she aptly put it I am lost. lymphoma is robbing me of the things I know and love and somehow I need to either find other things to do. Or find new ways of doing the things that I love. Somewhat easier said than done, but we have another meeting scheduled in two weeks time when she hopes to be able to provide some direction. It will be a very interesting meeting.