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Dignity on the move

Dignity is finally on her way to Australia. Peter and Sam, checked out of Fiji Monday morning as a fine weather window opened up for them.

We are getting daily updates from Christina, Peter’s wife, who is in regular contact with them over the SSB radio. She is checking their position and condition and passing on essential weather information.

They had a pleasant first day sail, with 15 knots of wind, making good progress doing 6.5 kts with a swell out of the SW of 1.2m.

Yesterday their second day was a little tougher. They went through a little trough which was expected, but the wind turned out to be stronger than anticipated. Peter didn’t contact Christina at the scheduled evening time, due to the fact that they were dealing with 34kts of wind at the time. The wind continued between 24-30kts for 4 hrs afterwards. They reefed down the sails and coped well with the strong winds.

Today the winds have died down and so Peter plans to motor sail until the winds picks up again which is forecasted to soon.

If the weather continues to look good and stay as predicted, Dignity will probably sail direct to Australia without stopping off at New Caledonia. A direct sail will give them an ETA of 23rd/24th of August to Brisbane.

Steve has just finished his third round of chemo. It is beginning to takes its toll on him physically and mentally. We take each day as it comes. We take short walks to exercise Steve, read, watch movies and TV (recently enjoying the Olympics) and plan our future for possible outcomes and getting a few things sorted or going. In the evenings we enjoy dinner and time with the family, just chatting about the day and things in generally. Steve and I use to do this with our children so it’s lovely to enjoy family dinner time again.

Last weekend before Steve’s chemo, we took a trip to the bay with Sarah, Russ and Jack (who acted as our chauffer to earn hours for his driving permit). This was the first time we’ve been by the sea since leaving Fiji. It was a lovely day.

 

Update

Steve was allowed home yesterday earlier than we expected. He is coping so well with the treatment. We are now cosied in our little garden flat. Cousin Sarah and Russ have added more things to make our stay even more comfortable and pleasant. They are amazing!
Our friends Janine and Brian have lent us their spare car which they said has just been sitting in their garage. This is fantastic as we now have independence and the convenience of getting around locally and to the hospital without relying on Sarah all the time. We are so grateful for their generosity.
Throughout life I have always looked for the good side of people. Always like to give people the benefit of doubt because we are all very human. During our travels we’ve met many many good and lovely people. I can’t really recall any bad ones…well maybe the odd miserable custom official!
My belief in people’s goodness and kindness has been justified over and over again during this very difficult time for us. We are extremely fortunate to know and have wonderful family members and friends so generous of heart.

Treatment

Steve has completed his first course of chemotherapy and sail through it. Since he has cerebral lymphoma they had to give him a strong concoction to penetrate his brain. He coped brilliantly. No nausea and no apparent side effects so far. Physically he’s doing really well. We are hoping he will be able to come home this coming Wednesday for about nine days before his next course of chemo. The treatment consists of five, 2 weeks cycle of chemotherapy and at the end Steve will have an assessment and we will see how he is doing.

Emotionally Steve often struggles but he is strong. Our lives have completely changed and there’s a lot to take in, accept and adjust to. The heavy dose of steroids he is also taking, intensify all his anxieties and worries so that’s a battle in itself. The doctors and nurses here have been amazing. I expect in a chemo ward like this, the staff are often dealing with people like us and have the support system in place. I am certainly glad of it.

Our plan for delivering Dignity to Australia is going well. Peter on s/y Nymph will be delivering our boat for us. We know him and trust his skills and experience. He is also the boatyard manager at Norsand, NZ where we hauled out and did work on Dignity so we know he has excellent knowledge of boats in general. Sam and Dignity will be in good hands.
At the other end in Brisbane where Dignity will be delivered to, Trish and Rob on s/y Bristol Rose have been researching marinas and making enquiries for us. We now have a berth booked at Manly at the MBTBC marina. Thanks to Trish for all her efforts.

We are hoping that Sam will continue the tradition and write about the passage to Australia for our blog.

Again thank you everyone for your best wishes and kind thoughts. I am sorry I have not answered many of your emails but every message was very much appreciated.

Initial report

Dare I say it – yes we are still waiting!

We did get some preliminary report of the biopsy. The senior consultant of Infectious Disease came to see Steve. He said it was good to finally meet the person they’ve had so many discussions about.  He reamed out a long list of test they had done which I can’t remember much but included TB, brain worms and certain types of bacteria/microbes.   All test results were negative.  Things like ciguatera, vCJD were eliminated very early on. The biopsy showed no signs of micro organisms so critters in Steve’s brain have been ruled out.

Our neurology consultant also visited to let us know that his first impression from the biopsy is that Steve has an aggressive attack of MS.  It’s not conclusive yet as they still have to complete the full cell stain test. Steve’s lesions patterns are unusual and not quite typical of MS so they have to make sure lymphoma is completely ruled out.  The full result should be back on Monday, latest Tuesday.   What they do know for certain is that there are many inflammations in Steve’s brain; therefore they immediately started a three days course of steroid treatment intravenously. Already Steve is showing marked signs of improvement. He is more alert, energetic, cheerful and his balance is coming back.

We also celebrated a lovely diversion this week. Cousin Sarah and Russ’ oldest son Christopher received the Premier’s VCE Award for
outstanding achievement in Further Mathematics. The whole family including Chris’ younger brother Jack and sister Ross and Patrick (the trainee guide dog they have been looking after for the past year,) attended the award ceremony and tea, where the Premier of Victoria presented the certificate. It really is a brilliant achievement as only a few top students from thousands in the State of Victoria get this award. Chris has also been accepted to Stanford University in the USA and will be starting there this coming September. So lots of preparation and excitement along that front too.

Today the family left for their much deserved winter vacation to Queensland. They will be away for ten days, hopefully to enjoy plenty of sunshine, beaches and fishing. I haven’t been left entirely home alone. Besides the stick insects, frogs, chickens and the cat, I have been introduced to Sarah’s neighbors and friends who have kindly told me to call on them for any help and also to invite me for a meal or two in the evenings after visiting Steve. I am still being well looked after here.

 

 

A birthday to remember!

The waiting did not end.

On Tuesday after looking at the results of the spinal and brain MRI, the senior consultant did not feel convinced that it was MS. He said that the type of lesions/abnormalities seen in his brain were very unusual and rarely seen. There were elements of MS but more as well. He wanted to study the scans further, get a couple of second opinions and talk further with the infectious disease doctors. He was reluctant to give Steve any steroid type treatment as it might just mask the real cause. He also ordered another brain MRI to check if there were changes in the abnormalities i.e if it’s getting worse or stable.

On Wednesday, Steve had another brain MRI and a test called a Visual Evoked Potential. One of the infectious disease result came back negative.

Yesterday (Thursday) was Steve’s birthday. For a birthday present we were hoping for some positive results. Mid morning our senior consultant, the head neurosurgeon and about ten member of the team (no exaggeration) turned up. The MRI showed that Steve’s lesions are getting worse and they wanted to do brain biopsy straight away. So yesterday afternoon Steve went down for his brain biopsy.

The operation went very well. They were able to get a good sample for biopsy in a safe area of the brain, very near the surface, so the intrusion was minimal.

In recovery I asked Steve how he was feeling and he said “really shitty” so I knew he was OK. He was very lucid, thirsty, hungry and wanting to wee, all good sign. I left him last night after his pain medication to get a good night sleep. I got a good night sleep too.

This time I think the waiting is almost over.