Author: helen

  • Memory Update

    Sorry I haven’t updated recently. I’ve been waiting for Steve to show some real improvement with his memory issues but unfortunately there hasn’t been any real change in that area.

    There has been improvement with his general health though. One positive result of his memory loss is that he’s forgotten how much he dislikes hospital food and is eating well. He has finally gained weight and is doing gentle exercise to gain strength too.

    The main concern at the moment is Steve immune system. He is struggling to generate enough white cells and platelets. Last week he started developing temperature spikes which is a sign of infection. An MRI taken showed inflammations in Steve’s brain, especially around where short term memory is thought to be processed. So he is back on strong antibiotics and antivirals.
    To help the immune system and memory issues, Professor Linch has started Steve on Interferon. There are risks with this treatment but the benefits outweigh the risks if it works. Steve had his first dose the other day so we wait to see how he responds.

    As for me, I still commute in everyday to spend the day at the hospital with Steve. We get regular visits from family and friends and a few times I’ve met up with old friends for lunch or a drink. Sometimes I take a break for an hour or two and visit some of the many museums, libraries, and shops nearby. That’s one advantage of being in the center of London.

    I’m also kept busy with quite a lot of paperwork, fortunately Steve is so well organized that I’ve been able to take over quite easily. The purchase of our house in Chorleywood is going smoothly. We’re expecting to exchange contract next week and close end of August/early September. As many can imagine I spend many hours planning and scheming how to decorate and furnish the house. I’m very much looking forward to having a home again.

    Thank you everyone for your continued support and words of encouragement. They certainly help to keep me strong.

  • Memory Loss

    Steve had a seizure/fit last Sunday at home. I called emergency and he was taken by ambulance to Stoke Mandeville our local A&E hospital. He stabilized quickly but was left confused and appeared to have no memory of recent events. Stoke Mandeville hospital kept him overnight and then transfer him back to University College Hospital in London once they had talked to Steve’s doctor there.

    Since then Steve has no memory of the past year and vague memories of the previous year or so. He often thinks that what happen a couple of years ago happened yesterday. Neither can he retain short term memory. Everyday is a new day to him. We have to repeat where he is, why he’s in hospital, his time and treatment in Australia, our sale of Dignity, our return to England etc. every day. Often what we tell him in the morning is forgotten by the afternoon. After four days of repeating the same facts, I have written down the events of the last year so that Steve can read it over and over again.

    Many checks have been performed to work out why Steve had his seizure and memory loss.
    The results of the MRI showed no difference between the scan from before and after his seizure. This is good news as there are no noticeable damage to his brain and no sign that his lymphoma is increasing and causing the problem..

    The neurologist did a whole load of tests. All physical reactions and reflexes were good. Steve was able to read fluently, respond articulately, name all pictures of objects and famous people shown and do numerical recalls extremely well. He has complete memory of his birth date, place of birth, our children’s birthdays, our anniversary date, all the things that he’s known for many years. He just does not have recent memories.

    The neurologist is incline to think that the seizure and memory loss are caused by an infection. So specific test are being made for brain infections. We should get some results by Monday. Steve also had some EEG done on his brain mainly to check that he not having mini stroke. If Steve has a brain infection than the doctors are pretty confident that once treated, most of his memory will come back.

    Steve is still very much himself although I think he is more cheerful, optimistic, mellower and funnier. He said it’s probably because he can’t remember his worries, although not remembering is a bit of a worry!

    For me it’s been pretty distressing but I’m beginning to come to terms with this new complication. So for the moment I’m making the most this funnier and sweeter Steve while it lasts.

  • Update from Helen

    Steve has asked me to write this blog because he is feeling very worn out and just being able to lie back, relax and take a rest from the internet is just what he needs.
    There’s been some challenges with his treatment lately. He’s developed complications with the liver and is a bit yellow at the gills.
    This diversion means Steve’s next round of chemo has been delayed and the gap we needed to get to Ben and Amy’s wedding in Connecticut has basically gone. This is the saddest part and we are very disappointed. We are consoled by the fact that another ceremony will be planned in the UK for all the family and friends here.
    The care and treatment Steve is receiving here at University College Hospital has been excellent. He has a nice (although very clinical looking) private room with an ensuite. I can stay overnight whenever I want as it’s easy to make up a spare bed in his room. I have taken advantage of this a few times but in general I go home most nights. I do need a break from the hospital.
    The journey to and from hospital is not too bad. The train line is direct from Chesham to Euston Square with no changes. The hospital is literally just across the road from Euston Sq. station. If I catch the fast train, the journey is about 50 minutes. If I catch the slow (stops at all stations) train it can take an extra 20 to 30 minutes. I don’t mind as I get time to read and occasional talk to fellow passengers.
    These are certainly challenging times and I thank all those who have been sending us good wishes. As always Steve continues to stay positive and faces any new issues with his usual humour and courage.

  • Four years on

    Once again I have been encouraged to write a retrospective on our year of travelling. Steve has been nudging and hinting for many weeks! Reading is one of my favourite past time however writing is one of my least so I am taking a big breath to get this started.

    I have just re read “One year on’ and “Two years on” and wondered why I never wrote “Three years on”. I believe that was the time we left the boat to visit family and friends in South Africa and the UK and I didn’t have the inclination or time to reflect.

    Thinking back, our third year was another amazing year which is worth a brief mention. Although we spent our time in only two countries, New Zealand and Fji, we packed in a great deal and had some of the most unique and memorable experiences.

    New Zealand is a beautiful country, with a temperate climate, stunning mountain scenery and no snakes! We spent nearly six months exploring both the South and North Islands and enjoyed some of the best hikes we’ve ever done. If New Zealand weren’t so far away from our families and the rest of the world, we would have seriously considered settling there.

    Fiji was as beautiful but in a completely different way. Golden beaches, swaying palm trees, clear blue seas and some of the friendliest people we have met. We spent many weeks visiting remote islands and villages where the locals rarely see foreigners. We had the chance to get involved in village life, help out in our own way and enjoy their wonderful and generous hospitality.

    Our fourth year of cruising started by sailing back to New Zealand from Fiji and putting Dignity on the hard in preparation for her diesel conversation and our trip to visit family in South Africa and the UK for Christmas and New Year. We extended our stay in the UK until mid February for the the birth of John’s daughter Bao (pronounced Bo), our first grandchild. What a wonderful event.

    We returned to New Zealand and Dignity in time to meet the French technicians from Lagoon who were going to work on the hybrid to diesel conversion. Our two technicians have converted about fifty Lagoon 420s and with five crates of prepared parts, shipped from France, were able to complete the work in record time. We were extremely impressed with their skill and hard work.

    In early March we splashed back into the water and tested out our new engines. They worked beautifully and were more powerful than our old electric motors but also a lot noisier. Still we were happy to have more powerful and reliable engines especially for some of the places we were planning to visit. We spent the next few weeks exploring the NE coastal waters, the Great Barrier Island, Waiheke and making our way down to Auckland to meet up with our youngest son Sam and to prepare for our departure from New Zealand.

    Our cruising plan at that point was to sail from NZ to Australia via Fiji, Vanuatu and New Caledonia with a short trip to the Solomon Islands for the Pacific Arts Festival. Sam our youngest son was to join us for this leg. John and Ben, his two older brothers had each done a six months trip with us so this was Sam’s opportunity to share in our adventure.

    We left New Zealand for Fiji at the end of April with Paul our crew from last year joining us for the crossing again. Having four people on board made the passage so much easier. The watches were two hours on and six hours off allowing for plenty of sleep and free time. We had hoped to make landfall on 7th May which was Sams 22nd Birthday but instead arrived on the 8th. It didn’t matter, we were delighted to make landfall and go ashore to have a belated celebration.

    Around this time I noticed that Steve was not quite his buoyant self. I wondered if it was the anticlimax of arriving in Savu Savu and finding none of our cruising friends there as we had last year. He was also staggering a little when walking and tripping over his feet quite often. Again I wondered if it was due to the new flip flops he was wearing that Sam had brought from the States.

    After Paul left us to return to New Zealand, we headed north east towards Taveuni and the reefs beyond to share with Sam some of the places we enjoyed last year. By the time we arrived at the northern end of Taveuni Steve was getting dizzy spells and walking even more off balance. We decided at this point not to go to the remoter reefs but return to Savu Savu and see a doctor instead.

    It took us about three days to get back to Savu Savu and by this time Steve was beginning to develop double vision. While we were away a few of our cruising friends had also arrived in Savu Savu and among them were some nurses and doctors. Our two doctor friends on Dreamtime were not impressed with the local doctors diagnosis of scurvy and advised Steve and I to fly to Australia to see a neurologist and get an MRI done as soon as possible.

    We decided to make our way to Port Denaru on the western side of Fiji which was near the international airport and where we knew there were better doctors. Steve plotted a five day trip to Port Denaru but his symptoms and also his mental and emotional state was getting worse. I pushed each days sail and made it to Port Denaru in three days. The moment we were safely moored in the port, I made an appointment with the resort doctor recommended by the marina office.

    After a general physical examination, ECG, blood test and skull xray, which all came back normal, the doctor advised us to fly to New Zealand or Australia or even back to to the UK for specialist help. He recommended a neurologist or an ophthalmologist and a CAT scan.

    Since the start of Steve’s worrying symptoms we had been in contact with Lew, our doctor friend in New Zealand. He offered to arrange medical referrals and accommodation for us if we went to New Zealand. At this point I also contacted my cousin Sarah in Australia asking her for advice as to where she thought I would get the best medical help since she had lived both in New Zealand and Australia. She insisted we came to her in Melbourne where locally she had some of the best medical facilities in the country. At the time I needed family and also I really wanted to see her so the choice was Australia.

    We left Sam in Port Denaru to look after the boat while we flew to Melbourne thinking we would be back in a couple of weeks. Sarah and her husband Russ were at the airport to meet us and soon we were settled in their lovely self contained flat at the back of their garden by the pool.

    Sarah is wonderful and a very organized person. Before we arrived she had already arranged an appointment with her GP for Steve see. To cut a long story short, we saw the GP, had a CAT scan, saw an ophthalmologist who recommended an MRI and it was the MRI that finally showed abnormalities in Steve’s brain. A week after arriving in Melbourne, Steve was admitted into emergency at Monash hospital and into the care of Neurology department.

    Over the next two weeks many tests were performed on Steve. Possible diagnoses were vasculitis, lymphoma, some form tropical disease and Multiple Sclerosis. During this time, Steve continued to deteriorate. With no definitive diagnosis, the doctors finally ordered another MRI and when they saw that the lesions were getting worse, decided it was worth risking a brain biopsy immediately.
    So on Steve’s 48th birthday he went into theater for a brain biopsy.

    Before the operation, Multiple Sclerosis was the most likely candidate. I had been doing some research on the disease and although not good to have, felt that we could deal with MS. So it was a terrible shock when the doctors confirmed that the result of the biopsy was lymphoma. Not only that but it was a very rare form of T-cell lymphoma of Primary Central Nervous System. The rarity and type made it difficult to detect just from earlier blood tests, the lumbar puncture and bone marrow biopsy. The doctors recommended a program of chemotherapy and radio therapy over the next few weeks. We asked what the prognosis would be if Steve did not have treatment. They said less than fifty percent chance he would survive 3 to 6 months so it was a no brainer to start treatment immediately. Steve was transferred to the Hematology department where he started his intense cocktail of chemotherapy which had to penetrate his blood brain barrier.

    Meanwhile I was getting very concerned about Sam and Dignity in Fiji. Knowing that we would not be able to return to the boat for some time I decided that the best option was to get the boat to us here in Australia.

    Fortunately many people offered to help including Peter on Nymph who was currently there in Fiji with his wife Christina and family. Peter was the boat yard manager in New Zealand where we had had all our major work done so I knew that he was very knowledgeable and an experienced sailor. I felt fully confident that Sam and Dignity would be safe in his hands.

    Peter and Sam left Fiji for Australia around mid August with Christina keeping twice daily contact with them over the high frequency radio. She in turn kept me updated daily by email of their position and status. Steve at the time was midway through his rounds of chemotherapy, still very ill and extremely anxious about Peter, Sam and Dignity.

    For three days I got excellent updates from Christina with the weather forecasting a good direct sail to Australia instead of stopping off in New Caledonia. On the morning of the fourth day I noticed that the email from Christina was marked important. Feeling a bit uneasy I open the email and read that Dignity had dismasted early that morning about 300 miles out at sea from New Caledonia, the nearest landfall. Fortunately neither Peter nor Sam were hurt due to Peters quick action and know how of cutting away the rigging and the sails, saving themselves and the boat from major damage. The cause was a fault in the swage which snapped and brought the shroud and then the whole of the mast down.

    As one can imagine, I was in shock for most of the day and did not know how to or even if to tell Steve this news. I spent the day emailing and calling our insurance company, Lagoon, Christina and friends for help and advice. When I finally had confirmation that Peter and Sam were motoring safely to New Caledonia and that I had some sort of plan for Dignity, I was able to tell Steve the news. Obviously he did not take it well. A summary of the dismasting and the safe arrival of Peter, Sam and Dignity to Australia is written up at http://aboarddignity.com/blog/?p=5896 in our blog.

    During this very difficult time, my cousin Sarah, Russ and family were our lifeline. They had given us a home, made us welcomed, supported and helped us through our darkest times. Sarah has been my strength and rock, especially at moments when I have felt truly desperate. I cannot begin to express how much they mean to us and how thankful we are to have such a wonderful family.

    We also had amazing help and support from our friends Janine and Brian who live not far from Melbourne. They have lent us their spare car for all these months which has been invaluable help to us for all the hospital trips, daily radio therapy sessions, local outing, airport trips and a few getaway weekends. Such a generous offer and so very much appreciated.

    Although these past six months have been the most difficult we have faced, we have discovered how fortunate we are in the family and friends we have. How fortunate we are with the wonderful medical
    staff and facilities we have here. How kind and generous so many ordinary people have been to us. We are extremely grateful for the many, many, many offers of help, messages of encouragement and good wishes, from family, friends, fellow cruisers and blog readers. They have all been of real comfort and so very heart warming to receive.

    Now, more than four years after the start of our amazing voyage, our sailing adventure has come to an end. Dignity has been fixed up and is up for sale. We tested her new rigs and sails last week when we were up in Brisbane to finalise preparations for her sale. She performed better than ever and we are quite jealous of who ever will buy her. That is probably the last time we will sail her and now that we have left Brisbane with no plans to return, we may never see her again.

    Steve has his final chemotherapy session between Christmas and New Year and that will be the end of his primary treatment. He has recovered so well that we hope the result of his MRI in early January will show full remission. The long term prognosis for this type of cancer is not that great but Steve and I are prepared to fight it in every way. We plan to leave Australia at the end of January to visit Steve’s family in South Africa where unfortunately his father is also ill with cancer. Then we will return to the UK to reestablish a home and make medical connections.

    We are sad that our sailing life has ended sooner than planned but are so happy and fortuante to have had three and half years of the most incredible time and what a time we have had. The things we’ve seen, the people we’ve met, the fantastic experiences we have had, has changed us and helped us grow in so many ways. We are left with lasting impressions and marvelously wonderful memories.

    This does not mean our adventuring life is at an end. That’s impossible if you live with Steve. We have many plans and a growing bucket list to get through. We are very excited about the next stage of our life, so continue to watch this space.

    Lots of love

    Helen & Steve

  • Dignity Dismasted

    Sam, Peter and Dignity have arrived safely in Brisbane, Australia after a major incident out at sea. In our previous blog, I wrote that Dignity left Fiji on Monday 13th August and was making good progress to Australia. On Thursday 16th August, Christina, Peters wife contacted me to let us know that Dignity had dismasted early that morning. As one can imagine it was a terrible shock for us. Fortunately Christina also informed us that both Peter and Sam were unhurt and coping well with the situation.

    This is the report Peter sent to us.

    He was on watch when the incident happened. Their weather situation at the time was light to moderate, with south-east winds at 13-15 knots true. The sea state was also calm to moderate, with 1 meter south-east swells. They were averaging 6.5 knots under full sails. They were sailing cautiously throughout the voyage and took all steps to sail safely. The spare halyard was even tied to the port forward cleat to assists in supporting the rig and with loading.

    For no apparent reason, the port back-stay snapped inside the lower swage and the mast fell across the deck and into the water on the starboard side. After raising Sam our son, he inspected the situation and started taking steps to try and salvage the rig. After 5 minutes of realizing the potential risk to them and Dignity, he decided to cut the rig free.

    The damage to the hull and deck are minimal, however we lost the whole rig – mast, boom and sails.

    Peters experience as a qualified composite and wooden boat builder, with 14 years of around-the-world sailing experience, including over 50,000 miles at sea, confirmed that nothing could have been done to prevent the situation. He dealt with the situation the best possible way which resulted in no injury and minimal damage.

    He had inspected the rigging and hull before departure. No cracks in the rigging wire, swage, toggles, or rigging turn-buckles were evident. Unfortunately it is not possible to check inside a swage for wire condition without x-ray. Also, the rig being only half its expected life, he did not expect any problems. It is only 5 years to date.

    The nearest landfall from where the incident took place was New Caledonia nearly 300nm away. There was plenty of fuel stored on the boat so Peter and Sam were able to motor to New Caledonia and arrive there in just under three days.

    Once safely in NC, Peter started extensive research to find the best options for the repair of Dignity.

    There were only two options really. The first was to stay in New Caledonia, import parts and have the repair done in Noumea. This could take 4-6 months to complete and result in high costs of berthage and high labour costs and all the difficulties of communicating in a French speaking country. Also the completion date could carry on into the cyclone season and involve additional risks.

    The second option was to motor to Brisbane, Australia for repairs. This was a realistic option, but did have some risk like running out of diesel due to head winds and having engine problems. However both Peter and our insurance company preferred this option. Peter felt the risks would be quite minimal. We had two brand new engines so had back up and he would only run one engine at a time. They would also carry more than enough fuel to see them safely to Australia. Also a perfect weather window was opening up for motoring with light winds and low seas for many days. Even so Steve was very reluctant to let them go but was finally persuaded to do so.

    We are so happy and relief that they have finally arrived safely into Australia. It took them eight days which is pretty good.

    This has been a bit of a disaster and not what we wanted at the moment. However I continue to count my blessings.

    We were so fortunate in having such a knowledgeable and experience Captain. Peter has more than proven our confidence in him. We are so grateful to him for bringing Sam and Dignity safely to us.

    It is a strong possibility that we will have to sell the boat and return to the UK. The positive side to this incident is that the import duty will be much cheaper because of the damage to Dignity. However once the repairs have been done I am sure buyers would be much more tempted to buy a boat with brand new rig and sails.

    I am also blessed with the most amazing cousin. Sarah, her husband Russ, children Chris, Jack and Ros could not have done more to support us. They have become very special to us and I am so glad we have had the opportunity to get to know them well.

    I am thankful for our friends Janine and Brian who have lent us their spare car all this time. It has made life so much easier for us especially during treatment time going to and from the hospital.

    I am grateful for my wonderful family and friends all over the world. For their help in dealing with issues for us whether it is in the UK, USA or in Brisbane. I thank you all.

    Also for all the people who continue to offer us help and send us words of encouragement. We truly appreciate it.

    Finally I am indebted to the doctors and nurses at Monash Medical Hospital for Steve’s life. If he had not started his treatment when he did, he would probably not be alive today.

    We are indeed fortunate.