There is much I want to say about the whole selling process in Australia and [...]]]>
There is much I want to say about the whole selling process in Australia and much I shouldn’t. I need to think carefully. I will compose myself and say more at later date.
But for now I want to thank, publicly, those that helped us get to this point.
First, middle and last has to be for Sarah and Russ who looked after us through the dark days, weeks and months last year. It’s hard, even now, to think back to those days. They were truly difficult and you guys were so good to us.
Big thanks have to go to Trish and Peter Cronk for all the support they gave to Helen, working out what to do with the boat when it was stuck in Fiji and Peter for your support during the sale.
Huge thanks and admiration to Peter (and supporting wife Christina) for getting Dignity and especially our son Sam to Australia despite the dis-masting along the way.
Thanks again to Brian and Janine for all your help and friendship.
And thanks to all our cruising friends who helped look after Dignity and get her to sale. Special thanks go to Bert and Ingi (Boree) and March and Pam on Passages.
There’s a saying that the two happiest days of a boat owners life are the day they buy their boat and the day they sell it. There may be a big relief today but the phrase is not true. Our happiest days were all those we spent with our family and friends along the way. The exotic places, the sundowners, all of that helped of course but when we look back, it was always the people that mattered the most and brought the greatest happiness.
This was the third and final pending announcement, if you hadn’t already figured it out. Ben and Amy’s engagement has brought us by far the most joy. My hair, it continues to grow along with my health, strength and optimism for our future.
]]>The Peter Mac Center is very nicely laid [...]]]>
I have now had the first two out of twenty radiotherapy sessions. These first two sessions took extra long as a lot of further calibration was required. This was all expected. On the second session we took the camera and Helen took a lot of pictures.
The Peter Mac Center is very nicely laid out. In the main waiting room there’s a TV, fish tank and a couple of jigsaws to pass the time. It even has a screen showing how the timetable is keeping on each of the four radiotherapy machines and on the other ‘tools’ such as the CT scanner.
I now have a personalized tray where my gown for each of the sessions will be kept. This is in a second waiting room which we’re sent to when we’re nearly ready. On my first session I was in this room for barely a minute while the second time it was about half an hour. Fortunately Helen is allowed in there with me. I usually try to break the ice by chatting with the other folks and they all seem willing to talk.
In 
the machine room itself I lay face down with my head held by the plastic mask. It’s actually quite comfortable but so snug I can’t open my eyes. So I have to listen to everyone doing their jobs, very professionally, around me. Session 1 was nearly an hour long. Session 2 was about half this. I am told the time will come down further as time goes by,
In some of the pictures you’ll see green laser lights which are used to position me accurately. I’m all for this of course.
The machine emits high energy focused X-Rays to zap the tumours. If you’re interested the machine is definitely a Varian Clinac but I’m not yet sure which model number it is. Information on all the Clinac machines can be found here and how they work can be found here.
Here is the full set of pics.
Friday also saw the big event of Dignity’s new mast being stepped. John from Passages very kindly observed the process and took pictures of the work taking place. As he has a lot of experience in the boating industry it was good to hear him confirm the work appeared to have been done very well.
]]>
see the three generations of ladies again – the last time we saw them was back in February. Ella is son John’s partner. She was aboard Dignity with us in Costa Rica. Bao is her daughter and our granddaughter. Penne is Ella’s mum. We love them all.
Considering Ella and Bao had just travelled from the UK and neither had had much sleep, both were very well behaved. Bao was quite keen to show us her standing skills as can be seen in the pic to the right. Helen and I performed our grandparenting skills well. Helen gooed all over Bao while I fixed the car baby seat.
They were able to stay with us for a couple of hours before tiredness began to kick in. Penne then adroitly drove them back to their home up the sunshine coast north of Brisbane.
In the afternoon Pam and John from Passages popped by for our final, final goodbyes. Hugs and kisses all round. John is going to keep an eye on the work on Dignity this week and hopefully take some pictures of the work being carried out.
Around 4pm Trish came to give us a ride to the airport. It’s fantastic having all this support from our friends and we really appreciate this. We obviously chatted about our family reunion earlier in the day. We never had time to visit their new home but hope to do so during our next visit to Brisbane.
Watch out for another entry very soon. Had two rounds of radiotherapy so far. Plenty of pics to show.
]]>Sam returned from his Greenpeace training yesterday (he has a job there) and we spent most of the afternoon and evening together having dinner aboard together. In the evening we also managed to sell our sea anchor which is only of interest to planners of long passages. We’re particular pleased as most of the folks here are coastal sailors and hence less likely to be interested in it.
At 6:15 this morning (Wednesday) Jason from the shipwrights dinghied over to help us come over to the yard. At that time of the morning the wind was light. John from Passages joined us for the very short (<1km) motor over to the yard. It was a very mixed experience for Helen and I as this was the first time we've been able to move the boat since we left it in Fiji back in June. All the feelings of being off on adventure came back but offset by the sad feeling that this could be our last trip on Dignity. We are now tied up to the yard dock and work will soon begin on Dignity. Measurements for the mast compression pole fix have been taken and I believe the new metal is now being made up. Ella, granddaughter Bau and Penne (Ella's mum) are hopefully on their way from the airport and we're looking forward to seeing them all soon. Rob and Trish popped by for Rob to say goodbye to us. We'll see Trish later as she's offered to take us to the airport.
]]>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, [...]]]>
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.
]]>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.
]]>We didn’t have long to wait. Soon I was undressed and in the PET scan room with several nurses in attendance [...]]]>
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.
]]>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.
[...]]]>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.
]]>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’ [...]]]>
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.
]]>The last few months have been one hell of a journey for both of us. Helen has been a pillar for us both throughout this experience. She has refused to give up and always looked for the positive view. I’ve seen sides of her I’ve not seen before and become ever closer as a result. This optimistic side has been reflected in the blog entries she has made. This hasn’t told the whole story as you can imagine. Naturally we’ve both had our darker moments and sometimes together. I won’t dwell on this.
For my part I left off back in Port Denaru when my symptoms were continuing to grow more severe. Looking back at what I wrote I can see the emotional deterioration too. I was not only reacting to the other symptoms, but my emotional state was also a symptom too.
By the time we flew to Australia not too long after my last blog entry my mental and emotional state was such that my communications shut down. At that point we had no idea of the cause of all my symptoms but we were in the right place to find out. I remember bits and pieces of the first month but some aspects are a complete blank. Some events (like my brain biopsy) I have no memory of except for one brief one post op experience.
I remember being told the final diagnosis (Primary CNS T-C Lymphoma in brain and spine) and being quite unemotional about that. I was more concerned about everything else, especially my family.
Once I was put on a heavy dose of steroids to reduce the swelling in my brain I had a rapid but not complete turnaround. My double vision and imbalance recovered and my memory storing returned. The steroids had a bad effect on me emotionally. I felt very agoraphobic and withdrawn. Having the accommodation offered by Helen’s cousin Sarah and her family was priceless and we’re eternally grateful. Having somewhere to go and be by myself (with Helen putting up with me) was very needed. The loan of a car from our old friends Janine and Brian was also fantastic as it gave us the mobility we needed to get back and forth to the hospital through the chemo sessions without imposing on the family.
The five initial rounds of chemo soon began. I was administered high dose Methotrexate and Vincristine on each round and Procarbazine on the odd rounds.
The first round of chemo left me in a very dark place though. Dealing with anything was quite impossible. Helen continued to handle everything. This slowly improved in line with the reduction in steroid dose. Anxiety remained a big problem, particularly considering our remoteness, the boat situation and Sam and of course the disease and it’s various consequences.
Somewhere around round 2 I experienced a week of overnight leg pains which fortunately stopped a couple of nights before the next chemo round. I tossed and turned a lot with these pains and gave Helen a bad time sleeping.
At the end of round 4 I was prescribed Sertraline to deal with the anxiety. The combination of this and my general improvement over time later resulted in my returning to more my normal self around this time. I was able to interact with people more positively and I received a lot of positive feedback from those around me. This all helped a lot. It was nice to be able to interact with Sarah and her family without all the internal turmoil I had been going through.
Between rounds 4 and 5 we made our first trip to Brisbane to meet the boat. We were picked up from the airport by Trish from Bristol Rose who have their boat berthed at the nearby Royal Queensland Marina and who now live and work in Brisbane. As it turned out Trish gave us a greater surprise as unbeknown to us she’d picked up Sam in the morning and it was he that met us while Trish waited in the car outside. It was fantastic to see Sam there and to meet Trish again although I was being hammered by a really bad headache which was to last for 4-5 days. We met Rob towards the end of our visit which was equally nice.
At the not too aptly named Morten Bay Trailer Boat Marina we finally met up with Peter on Dignity. Dignity looked sad without her mast but inside you couldn’t tell. Peter stayed for a few days and was incredibly helpful talking to the various riggers, sail makers, shipwrights we had visit. For insurance purposes we needed multiple quotes so there were a lot of visitors. My headache and general condition at the time left me on the sofa for much of the time so this was doubly useful.
We returned to Melbourne for my 5th round of chemo. This was probably the hardest of the lot. While my headache had subsided it was returning in bouts making me sensitive to light and pretty uncomfortable. For the most part it responded to Panadol but one night I needed something stronger and was given some Endone, a much stronger drug. I’m not big on pain killers (apart from the ones you drink) so I’m glad I only needed this once.
Part of my normal behavior is to be a bit fussy about the food I eat. Maybe this was the reason I lost my appetite during round 5 of the chemo. After 3 months I’d finally had enough of the hospital food but I wasn’t feeling hungry. I’d lost a lot of weight by then but was on my way back up. It was a bit concerning to lose my appetite but it soon returned when I was out of hospital.
On rounds 1-4 I was discharged in minimum time when the methotrexate levels in my blood dropped below the required level. On the 5th round I had to stay an extra day. Even after the extra day I failed the blood test but asked them if there was any way I could go home regardless. With some extra drugs in hand I was discharged and able to join Sarah’s family celebrating their eldest son Chris’ 19th birthday.
So after 5 rounds of chemo my initial symptoms are vastly improved. I’m off the steroids but still retain by vision and balance. My mental faculties have returned and my confidence improved. I have managed to take on a lot of the workload Helen had had to assume. This is all good.
Without knowing how others respond it’s hard to really know but I understand I responded quite well to the chemo with not too many side effects. I have been left with some peripheral neuropathy (tingly finger tips and a numb area inside one foot). This is from the drugs and often improves over time. I also have a patch of skin on my left thigh which is numb. This could be nerve damage and probably won’t recover. My strength has been badly impacted as a result of a number of factors but is slowly returning.
After the fifth round of chemo I had two more MRIs (6th and 7th) of my brain and spine. With 8 days to the doctors visit to hear the result we made another trip to Brisbane to work on the boat.
Another nice surprise was bumping into Pam and John from Passages who are also here for a while. The consequences of my condition regardless of the treatment outcome are that our cruise has probably come to an end so it’s nice to keep a little of the old times going by meeting up with good friends.
Sam, who has entered on a young person’s work visa, had found some work and was building on his hours.
This time I was able to contribute more than during the first visit but easily tired.
We returned to Melbourne to hear the results of the MRI. This turned out to be in line with my symptom recovery. The lesions noted in earlier MRIs throughout my brain and spine had reduced both in size and number. A number of ‘shadows’ remained which could be scar tissue from before or still active lesions. Without extremely harmful burrowing through my brain and spine there was no way to know the difference so further treatment is recommended and soon. The recommendation is radiotherapy for whole brain irradiation and something similar for the spine. The spinal irradiation may affect my bone marrow so a drug regime to stimulate stem cell production into the blood followed by a harvest is recommended. If necessary, these stem cells can be used if necessary to treat side effects. The radiation therapy will be followed by two more rounds of chemo, this time Cytrabine.
We’ve spent a lot of time looking at our options regarding future monitoring / treatment. We’ve come to the conclusion that we will need to return to the UK for this and sooner rather than later. It doesn’t look appropriate to interrupt the current treatment as this would involve trying to integrate two disparate treatment protocols as well as creating a potential rediagnosis problem due to the progress made so far. So while we’re pretty sure it’s best to carry on here the future remains up in the air. We continue to research, communicate and learn more.
Next week, on Tuesday again, we meet the haematology doctor again as well as the radiotherapy doctor to learn more about the various treatments and make decisions, particularly about the radiotherapy, as to which to go with. Because my particular condition is incredibly rare, past stats are not in abundance. The last occurrence in Victoria, a state of 5.5 million people, of primary CNS t-cell lymphoma was 5 years ago so there’s not a great deal to go on.
So we’re back down in Brisbane for our third visit. The boat is still our home despite everything so despite having to be busy and not sailing anywhere it’s nice to be here. Having said that, the weather has been lousy the last couple of days so we’ve generally relaxed.
On the boat front, in conjunction with the insurance company we’ve selected our rigger, sail maker, shipwright and electrician. The insurance company has been good throughout as they should be. We have been told that the first tranche of funds has been passed from the underwriter to the broker which we now await so we can pass this on to the service providers to commence work.
The last 4-5 months have been a monumental experience for us and I don’t know how we could have coped (or in my case survived) without the help and support from family and friends.
First and foremost my sincere appreciation goes to Sarah and her husband Russ who opened their doors for us and keep reminding us they remain open. Thanks also go to their children Chris, Jack and Ros who have not just put up with us in their presence but welcomed us as family members going through a very rough patch. I feel a special affection towards all of them.
Again thanks go to Janine and Brian for the loan of their car which we’ve used for hospital visits and a couple of the airport runs.
Thanks also to our friends on Bristol Rose and Passages for the times they’ve helped us and just for their company.
Thanks of course to Peter for getting Sam and Dignity to Australia in one piece despite a problem that’s probably been long in the coming.
Big thanks also to everyone who has communicated to us throughout in any way, be it just supportive comments or with useful information about cancer and treatments. Sorry if we’ve not responded to everybody but please know how important this has been and continues to be to us.
It’s hard to express how much gratitude we have to the medical staff that have looked after me so far. My survival prognosis without treatment was grim so we have everything to thank them for.
Finally, and most importantly, my thanks go to Helen for the support she’s given throughout. Only she knows what she’s had to put up with and endure (even I don’t know for sure). I haven’t the words to really express how I feel for how she has coped with everything. As I mentioned earlier this experience has really brought us close together. Life has turned a corner for us and the future now has a lot of uncertainty. We know we’ve had a great run so far and treasure the moments we get now. The future still exists and we have much to do still. But we have each other to help face it and that is priceless.
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