Cruiser Connections « Aboard Dignity (Lagoon 420) Blog

Keeping on going

by steve, on October 23rd, 2012 (Australia, Bristol Rose, Passages)

Ok, so I thought we were slowing down but we’ve since sped up a bit.

On Sunday morning we were visited by nephew Owen, his wife Cynthia and daughter Tabatha. They live in the area and it was good to be able to spend some time with them. We’ve not seen Owen for many years, the last time being in the UK back in the 90s. During their visit we managed to sell off another boat item and later in the day sold yet another.

On Sunday evening Pam on Passages cooked us dinner and we stayed chatting with her and John for some time. John offered to keep an eye on Dignity this week as a lot of the repairs are going to happen. This will be a great help as John is very knowledgable and it can only be positive if the trades folk know someone is overseeing them.

Monday started off with a nice long Skype chat with older son John and granddaughter Bau. It was John’s birthday so it was a good excuse. The day was incredibly busy. Helen more or less completed all the packing while I did the paperwork. Helen even did all the package moving to the office as I don’t yet have the strength for all this. In the afternoon we were visited by more prospective buyers for the boat. It seems we’re getting a lot of interest now. As Helen pointed out a couple of months ago, the demasting is turning out to be a good thing. With the hull unaffected the upshot is Dignity will have brand new and locally warranted rig and sails coupled with almost nearly new motors which are also still under warranty. This sets her apart from the competition.

Monday evening we were picked up by Trish and Rob from Bristol Rose and we all went out for a curry dinner. As ever it was really nice to see and spend some time with them. Afterwards it was time to Skype solicitors (lawyers) in the UK to follow up on things. We settled down to watch a show on the laptop but both of us fell asleep almost straight away.

It is now Tuesday morning. Our 10 boxes and 1 case will soon be picked up and begin their long journey to the UK. Whatever else we find will have to go in our luggage. Then we call the shipwrights who will come over and we’ll move the boat over to the Royal Queensland maintenance dock where the repaired s/s will be refitted, the mast compression pole rewelded and the few gelcoat spots of damage repaired. On Thursday the new mast will be stepped. I’m assuming that Dignity will be moved back to her current berth on Friday.

Unfortunately we won’t get to see the mast fitting as we have to return to Melbourne tomorrow evening for the start of my radiotherapy on Thursday. I have 20 sessions planned, each of which will include whole brain radiotherapy and radiotherapy on my spine. Hopefully my bone marrow won’t be too badly affected. If it is, my stem cells are standing by. The radiotherapy will take 4 weeks so we can’t have any long trips back to the boat at least until late October.

Slowly slowing down

by steve, on October 20th, 2012 (Australia, Passages)

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.

RT Prep Day 2

by steve, on October 17th, 2012 (Australia, Passages)

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.

Last few days in Brisbane – for now

by steve, on October 8th, 2012 (Australia, Bristol Rose, Passages)

We’re now just a few hours from heading back to Brisbane Airport to fly back to Melbourne.

The last few days have been very much the same as previous. We’ve had some fantastic blue sky weather with some more windy days. Today is a bit cooler which will help us acclimatize for the Melbourne chill.

We’ve had a bit of luck in that we managed to sell our Hookah via the Gumtree ad. The buyer was only a couple of minutes away which meant we didn’t have enough time to check it out. I warned the buyer of this and that it might be hard to start as we’ve not used it since this time last year. As it turned out it started first time. It’s never done that cold before.

We’ve also done something that we’ve not done in three years. Helen has cut my hair. I had been thinking about my return to work and that I had to get my hair cut for that. I didn’t want to have a white pasty head so I wanted to get my hair cut short while we’re still in the sun. Helen also pointed out that the radiotherapy could result in my hair falling out and that it would be far better if my hair was short for that. It didn’t drop out during chemo but it did go a bit funny and I was getting fed up with blowing around. For a brief moment I felt sadly nostalgic as the long hair was totally associated with our boating life. But getting my hair cut is about preparing and fighting for the future. I felt quite positive. We have some before and after pics which I’ll post from Melbourne.

Last night we joined Pam and John from Passages for the last time – perhaps. They’re flying off to the Far East at the end of this month and we may not be back before they depart. We were all keen on having a light evening but you can guess where this is going. We started off on their boat for some wine. Next we went to the marina club house for burgers and beer. Back on Dignity was had a bit more wine and then polished off the brandy. Well – it’s our last night so it’s ok isn’t it?

Trish has offered to take us to the airport tonight which will be nice.

Tomorrow we’re visiting the radiology consultant and Prof Opat the haematology consultant again. I have put quite a few more hours into my research and learned a lot since last week. I’m practically certain the radiotherapy is the right thing to do especially as they’re talking about using the reduced dose therapy. I’ve found the study online and the results were good. The reduced dose has no negative effect on outcome and the side effects are practically non-existent. The overall survival rate (ie. most of them have) is the best I’ve seen for my condition. Very encouraging.

I have continued to feel well and needing only normal hours sleep. I’m still a bit offset to Helen getting sleepy hours after her and her waking first. I really have no idea how the next rounds of treatment will affect my wellbeing. A lot of the information I have found about the radiotherapy talks more about the hardship of the preceding chemo. I’ve come through that pretty well so maybe this next phase won’t be too hard. We’ll know more soon.

It’s a strange life

by steve, on October 4th, 2012 (Australia, Bristol Rose, Passages)

We’ve been back on the boat for a few days now and we’re experiencing a strange sort of ‘between worlds’ existence.

Dignity is very much our home and we both feel really good being aboard. With some cruising friends nearby and being amongst so many boats we even have times when it feels like ‘old’ times. On the other hand repairs now progress and people are in and out of the boat reminding us of the challenging passage to Australia and what we still have ahead. At the same time we know I’m mid treatment and the Melbourne experience beckons.

A brief update on my own health. I’m feeling better than ever (at least since May). Certain capabilities I’ve not been able to do have returned. I won’t mention them all but one is enjoying more than a sip of wine in the evenings. Helen is both pleased and not so pleased about this return to health. I still feel like I’m walking around on Jelly legs and each day after I’ve done some exercise leaves me with aching legs. It’s all good though. I’m also need less sleep than before. I’ve been regularly out for 11-12 hours per night and sometimes needing a nap during the day too. Last night, for instance, I was up until 1am and was awake 7 hours later. I’m pretty sure a lot of this is due to having time away from chemo.

Tuesday was eventful insofar as we finally saw our first tranche of insurance money arrive. Unfortunately there was not the best communication between underwriter, insurer and ourselves resulting in our getting a little less than expected. Overall this is not an issue but it takes time to work around these things. Nevertheless I was able to begin paying some deposit money and get folks into action.

With improving weather we set about boat work. There’s so much to do. Helen has begun packing stuff for eventual shipment while I have taken on the local sales role for things we don’t need to keep ourselves or leave on the boat. Tuesday resulted in colour ads for some of our items.

In the evening we had Pam and John from Passages and Trish and Rob from Bristol Rose over for dinner. I enjoyed the dinner AND the wine.

On the subject of weather it really turned nice this week although a bit windy at times. Rarely a cloud in the sky we’ve been able to heat our water off solar and wind as well as run the fridge, lights and TV in the evenings. Fantastic. I’m glad I rewired the electrics a way back so that the immersion heater could run off the main inverter.

Wednesday saw much of the same during the day. The shipwrights came round and removed all the bent stainless steel so it could be worked on at their work shop nearby. On removing ceiling panels to remove the mast base we discovered damage to the top of the mast compression pole. I took pictures and sent them off to the insurer/underwriter who responded most positively. In fact, an earlier email with them to detail costs incurred during delivery resulting from the demasting resulted in them deciding to pay us more. Never expected that. I believe this is due to them appreciating the efforts we’ve been to to keep costs down. Much of this credit goes to Helen while I was out of play.

In the morning Trish took Helen out to shop further away than Manly. I managed to get my tools out and repair a small electrical fault with the windlass control. This again felt a bit like old times.

In the evening Trish and Rob met us. First to look at and eventually agree to buy our kayak. (Someone has since called and been very disappointed we’ve already sold it). Next they gave us a ride to and joined us at a nice fish and chip cafe beyond walking distance. We were able to sit outside with our own wine and eat very tasty F&C. We were the only ones there practically and we sat there for about 2 hours chatting away. The usual boat crap of course but we loved it.

We did have a discussion about my treatment and prospects. Trish pointed out how different I was to when she first saw me when we were first here. Then I was between chemos 4 & 5 suffering from a constant nasty headache. We had to point out that even then I was vastly better than at the start of chemo or even when we first arrived in Australia.

Thursday morning I spent some time putting together some of the online medical materials we’ve found on line in preparation for the meetings we’ll have with the specialists next week. I’ve begun highlighting key points and this process will help generate the questions we need to ask which we’ll document so as not to forget.

I’ve also put quite a few items on GumTree. Hopefully we’ll get some action. This took a lot more time than I expected.

Helen has continued to be extremely busy sorting things out around the boat. The shipwrights returned to remove the compression pole discovered faulty the previous day. This turned out to be extremely difficult. Everything else has come off really easily as access to the mounts was readily available. While we had access to the whole support and it was movable, the pressure between top and bottom as well as the size of access proved too difficult. Work has suspended while we seek advice from Lagoon. A plan B is ready in case the pole can’t be easily removed.

Sam has been pretty busy and we often don’t see him. He now has full time work (sometimes until the early hours) in Brisbane and more options in the pipeline. We’re pleased for him in this sense. He always planned to do this but we do feel sorry for him as he just didn’t get the trip on the boat we’d all expected equivalent to what his older brothers experienced.

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