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Aboard Dignity (Lagoon 420) Blog

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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.

The waiting is over.

The waiting is over. We finally got the result. It is lymphoma.
What we had expected and been prepared for by the doctors, but still… it was hard to take in.
Our doctors have advised us to stay here in Melbourne for the first stage of chemotherapy which will start next week and take around ten weeks or so. They said Steve is still young, strong and healthy and should cope with the treatment well.
My wonderful cousin Sarah has insisted that we make ourselves at home in their garden flat for as long as we need. I can’t imagine how we would have coped without her, Russ and the family’s support.

Steve is much more positive and determined since getting the result. Now that he knows what he’s facing, he can’t wait to start treatment and fight this illness.

As for me, well I’ve always hated every storm we’ve encountered out at sea. Often I’ve said to Steve –“Never ever again.” But I did survive each bad weather, got stronger each time and found it easier to face and cope with the next one. This is a big storm of a different kind we’re facing. I know I will survive it. I know I will be stronger. I know I will cope, especially with all the love, help and support I have from my wonderful family and friends. But I absolutely dread it.

There’s a lot of planning to do. I am working out the logistic of having Dignity delivered to Australia, probably Brisbane. I am hoping that Sam will stay on to crew with whoever delivers the boat for us from Fiji. Dignity is our home and we want her safely here and ready for us to move back on to if we can or sell if we have to.

THANK YOU everyone for your comments, good wishes and offers of help. Steve and I really appreciated them. I don’t know what the future holds for us. I guess none of us really do. Given the prognosis we’ve been given, this is probably the end of our wonderful sailing adventure. We have had the most amazing three and half years. We are so lucky and happy to have had this opportunity.

At the end of the our first year sailing, Steve asked me to write a blog summarizing our first years travel which I titled
“One Year On” ( http://aboarddignity.com/blog/?cat=48&paged=2).
The last sentence I wrote was –
“There’s nothing more wonderful than to share the wonders of your adventure with someone you love.”

You know, that is absolutely true.

Medical Update from Steve

Things haven’t been too good recently. I have spent the last two weeks in Monash hospital having many tests performed to figure out whats up with me. Even after a brain biopsy things still aren’t entirely clear. The current thinking is that I may have lymphoma. Not good at all. We press on though and hope for the best. Helen has been astounding throughout all this taking on all the things I normally do. I love her dearly. How things have changed for us? We take each day as it comes. Hospital time is terrible and so I’m glad to have been let out tonight. Unfortunately I have to be back at 9am tomorrow morning.
Happy 4th of July.

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.