This story first appeared in my Licenced to Retire blog in January 2020
Those that have been following my blog over time will know that in 2016 I was diagnosed with Follicular Lymphoma and underwent chemotherapy. This led to the decision to sell the business and retire. The company was named after one of my sons who when young had snow-white hair. Hence James Blond and the catchphrase “Licenced to rent” so with retirement comes “Licenced to retire”.
Back in late 2018, I had a follow-up CT scan which indicated a return of the Lymphoma. This time, however, it had moved from my abdomen to an area between my heart and lungs. The haematologist ordered a biopsy to rule out lung cancer, and I had this in January last year. The “good” news is that it didn’t require immediate treatment, and I would be placed on what they call watch and wait.
For those that know nothing about various cancers, this might seem like a bizarre thing to do. There is, however, a logic to the process. You can only be treated with Chemo, so many times and then the body builds a tolerance to the drugs making them less effective. In a disease like Lymphoma, you can go through life needing multiple treatments, so they try to limit treatments until you need them. Hence watch and wait.
I can tell you that watching and waiting is a bit like waiting for the sword of Damocles to fall. It takes a bit of adjustment to know that you have something that will probably kill you just not at the moment. In fact, the odds of long term survival are actually pretty good. So with this, I spent 2019 back in the land of denial then around Christmas I felt a lump at the base of my neck, which I dismissed at first. Sadly the lump didn’t dismiss itself and a return to the doctor’s rooms, early in the new year, was required.
At my last visit to the haematologist (Tim) in July, we had agreed that I would have a CT scan before I saw him. With the usual efficiency of the Auckland Hospital, the letter containing the appointment for the CT arrived with an appointment time 3 hours after I saw Tim.
I had phoned the hospital to get Tim’s appointment changed so that I would see him a few days after the CT. Then I went to see my own doctor to confirm my suspicions about the lump in my neck. He agreed it looked suspicious, measured it took a photo and added it to my file.
I wanted to make sure that the CT scan would also include my neck and my usual doctor promised he would ensure that this was done. He would send a letter to the Cancer and Blood people with the photo and measurements to leave no doubt. So last Wednesday when I rocked up to have the CT done they, of course, knew nothing about doing my neck as no instruction had been given. Thankfully it was reasonably easy to get them to do it, given the size of the lump at the base of my neck.
I probably should mention at this point that I have consulted heavily with Dr Google and other knowledgeable sources of information. In fact, I wonder if there is a page on Google that I haven’t read. So I felt fully informed and ready for anything when I actually got to see the haematologist Tuesday morning. Almost every time I have met with Tim, things haven’t entirely gone the way I expected, and so it was on this visit.
Obviously, I knew that the lymphoma had spread; that’s why it was in my neck. What I didn’t expect was to see a CT report that talked about extensive lymphadenopathy (enlarged nodes) in an area where last year, there was only one enlarged node. It’s also under my arms and inside my left lung. So almost everywhere in my upper chest.
It was also something of a shock to discover that the pressure from these growths is causing even more problems with my phrenic nerve. The phrenic nerve is what drives the diaphragm, and this has contracted due to the pressure. This means that my diaphragm is now so severely elevated on the left side that almost 50% of lung function on that side is lost. At least now, I have a good excuse for being out of breath.
Next step is to carry out a biopsy on the neck as well as a bone marrow biopsy to accurately stage the lymphoma. If you have ever have been kicked by a horse, you will know what the bone marrow biopsy feels like. It’s something I am really looking forward to (not!). Once these are completed, I will start treatment.
When I asked Tim about possible treatments, he mentioned chemo (Bendamustine), which I was expecting. Then he said that after 4 months of chemo, they would likely do a stem cell transplant, which I definitely was not expecting. This is because the incidence between treatments in my case is quite short, and if they don’t do something this time, they will run out of options very quickly. I think you could just about have picked me up off the floor after that. So I guess that’s a bridge that will need to be crossed a few months down the track.
I have written this blog not to obtain sympathy but as a cathartic exercise to get things clear in my mind about what’s going on. Also while I intend to continue the blog and get out and about as much as possible, we could be talking a whole process that lasts 7 to 10 months, including 3 1/2 to 4 weeks in hospital plus recovery time. So it is probable that the number of blogs published this year will be severely down on the last two. It’s also likely that we will only get to places within an easy drive of Auckland hospital. So this summer’s South Island trip is now officially cancelled. I hope to be able to reassess things around September/October.
What I haven’t written about is my own emotions which I am still processing and have tried to keep this quite dispassionate. Obviously dealing with this takes its toll, both on me but also heavily on Sarah who has to also live with it. I think I will include more about this in later blogs as I am not quite ready to write about this ye