With the stem cell harvesting successfully behind us we were able to keep the Tuesday morning appointment at the Peter Mac Center at the Monash hospital in Moorabin for our second prep session.
We didn’t have long to wait. Soon I was undressed and in the PET scan room with several nurses in attendance trying out my new mask. It had been transformed into a Plexiglas like mask which was in place on the scanner table. The first thing to do was to make it comfortable as a few bits were sticking in to me. Using tools one would normally expect to find in the garden shed the nurses ‘trimmed’ the mask down.
Once I was made comfortable I laid face down with my face held by the mask. It was a perfect fit so it was an odd sensation having my head held still in that fashion. The nurses shifted me around, shone lasers around, lined me up, pulled my trousers and underpants down, prodded my spine, drew on me, drew on the mask and eventually gave me three tiny tattoos down my spine which will be used for lining up the radio therapy robot. The last act was to run me through the PET scanner to take an up to date view of my lesions with me in the exact position as I’ll be when I’m under the robot.
Not long after pulling my trousers up and getting dressed we were in to see Michael McManus, the senior radiologist. Due to a mishap the previous week our time with him had been limited so we had a full session with him. By now, we’ve learned a lot but it was good to hear his perspective on everything and ask one or two more questions.
We learned some useful information regarding the decision making process around the use and dose of radio therapy (RT). As one would hope, the treatment is risk adjusted. Ie, the decision to treat and the dose is based on the benefits expected from treatment versus the risks of side effects. For patients under 60 the risks to brain function are much reduced. Over 60s who appear to have completely recovered from the chemo are not given RT. Whereas those under 60 are given it regardless because the risks of side effects are so low, there is always the possibility a tiny amount of cancer is sitting there somewhere and it’s best to give it a blast at a very reduced dose. In my case, because they know the lesions are still there I’m getting the same treatment but a higher dose, ie more sessions. The dose is still well under the old standard which is known to be risky. Had I not been responding well to the chemo treatment I’d be having very aggressive chemo for which they’d definitely need my stem-cells. This is what folks refer to as stem-cell treatment these days. This is not on the plan for me.
Michael also talked a bit about my particular presentation of the disease. Ie, that I have Primary Central Nervous System Lymphoma (PCNSL), it’s T-Cell lymphoma and it’s in my brain and spine and nowhere else. I thought it was rare but now we know there are no records, globally, of this combination. I am, in a sense, unique. They may even write up a case study on me. Really, every patient is unique in their own way and fortunately my own disease is similar enough to other presentation that they’re not exactly writing the book on me.
Michael also ‘reassured’ us that my hair will definitely fall out. I asked him if this would include my eyebrows. He said they weren’t treating me for eyebrow cancer. Phew.
Another piece of good news in terms of our future planning. We managed to get in touch with Caitlin from the Leukemia and Lymphoma society here in Australia. We’ve met her a couple of times before at the hospital. She’s very knowledgeable, understanding and helpful. Knowing our need to build connections with the Uk health system she’s been researching ways to do this. It turns out one of the society staff members here knows the CEO of the charity over in the UK. She wanted our permission to contact her so she could contact us. The society there are very well connected with the hospitals and specialists. Building this connection before we return to the UK is likely to be of great benefit to us, possibly in ways we can’t yet imagine.
We now have a week before the radiotherapy starts so today we flew into Brisbane and are now back on the boat. We ran into both Pam and John from Passages before we even went over to say hello. We’ll be getting together this evening.
The current treatment plan takes us out to the end of the year so we’ll definitely be spending Christmas here. Hopefully I’ll have finished my final two rounds of chemo by then. We may spend Xmas here in Brisbane or back in Melbourne. Both options are possible. We’ll see.
