Aboard Dignity (Lagoon 420) Blog

On Wednesday morning we headed back to the airport to fly back to Brisbane. On the way we stopped by the Alfred Hospital to take some pictures and then went onto the passport office to pick up our apostilled documents. One last stop at the Fed Ex office and we were done. Getting to Brisbane presented no difficulties. Now that the school hols are over, we’re back to $80 flights each way which is a fantastic deal.

A taxi ride back to Manly and we were back on the boat. We managed to run into Pam from Passages on the dock and soon had an evening meet up agreed. Later we randomly ran into John too. The evening saw us first on Passages for a little social then back at the marina club house for dinner and ending up Dignity for some more socializing.

On Thursday and Friday Helen and I were hard at it doing as many remaining chores as possible. We are just about done now so today has been a bit of a light day. This morning we had a couple of prospective buyers round. They were a very nice couple who are planning to go cruising. While we hope they become Dignity’s next owners we do wish them all the very best for this next phase of their lives, even if they decide on another boat.

During their visit I noticed the starboard bilge had more water in it than it should. Once they’d left I momentarily overrode the bilge switch but from then on it work fine, even when it stopped and I put more water in. The bilge switches have some ‘smarts’ to prevent fuel in the bilge (were it to go in there) going overboard. Not a bad idea but this time I suspect it was spoofed by some dirt that may have built up over time sitting here on the dock. Once the thing started running it probably cleaned itself. I ran plenty of fresh water into the bilge just in case and did the same in the port bilge while I was at it.

I also changed out the pump on the collection tray for the main cabin A/C. We’d known it was a bit noisy and had ordered a spare which Sam brought when he came to NZ. It was a bit frustrating changing the pump as I had to cut the cable ties holding the old pump. Doing jobs like this I am reminded how weak (relative to my old self) my hands (and the rest of my body) are. I’d run into a similar problem in the morning when I was unable to lift the floor board to show the water maker.

By now almost all our belongings destined to go back to the Uk are packed and the pickup scheduled for Tuesday. I’ve put together some new pamphlets to sell some more of our spare stuff as most of the last lot are now sold. Today Sam took these ashore an put them up in a number of the local buildings.

Sam showed up on Friday and we’ve managed, since then, to spend a good amount of time with him. Right now he’s back off into Brisbane doing his thing. We may see him this evening.

For now, with little left to do, we’ve both slowed down a bit. It’s nice to be able to relax.

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.