Bookmark and Share
Cruising Matilda
Cruising our Lagoon 380 from the Med to Australia
New Blog Site

Due to Andy's illness, we are not sailing at the moment and I am keeping a blog on the above blog site and also via Facebook. Search for S/V Matilda and Myeloma Madness.

Hopefully we will return here when we get back to sea!

| | More
27/03/2015, Gosport

Matilda is still enjoying the Caribbean with Andy and his crew having spent the last couple of weeks diving in Tobago Keys. They are back in St Maarten now but should be heading off to Curacao for a bit of anti-fouling soon.

Back here, this last four-week cycle of chemo has been a long one. Andy's blood results are already down to normal levels and we were told that he would very likely be able to go ahead and have the stem cell transplant in April. Well, 90% likely, subject to a couple of other tests. We were pretty sure it would be OK but didn't want to count any chickens. We finally saw the Stem Cell Consultant last week and it's now definitely on for 12 April.

We managed to get a cracking weekend in with the family up in London as we won't be able to see much of anybody over the next few weeks/months. Fish and chips, curry, the finals of the 6 Nations (which Andy's beloved Ireland won) and time with the grandkids. Just the tonic he needed.

Preparation for the transplant started this Monday with Andy going into the Oncology Day Unit in Southampton for High Dose Therapy, a large dose of chemotherapy and a large dose of something else to alleviate the symptoms of the large dose of chemotherapy! I think it's going to be a bit like that from now on. Unfortunately I picked this time to have a streaming cold so spent 5 hours sniffing and sleeping in the car waiting for him to finish. Luckily, he somehow hasn't caught it. He now has to inject himself daily with GCSF (Granulocyte-Colony Stimulating Factor) which will increase the number of stem cells in the bone marrow causing it to spill out into the blood stream where they can be collected. (Wake up at the back! I will be asking questions at the end!) The treatment he's having is killing all the good blood cells off as well as the myeloma ones so he's also got to take antibiotics, anti-fungals and anti-viral medicine. The injections can apparently cause quite unpleasant musculo-skeletal pain so he's got that to look forward to.

So, an action-packed week for us, but if all goes according to plan, next Monday they will be harvesting enough stem cells for two transplants, one for now and a spare for when/if it comes back.

Tune in next week to find out how it all went!

| | More
31/03/2015 | Diana and Alex
Hi Jane and Andy - all the best for your spring revival. Sounds as though you are on track - so good to hear. Saw Matilda hanging off a mooring in Bonaire. Gave us a thrill. Wish you'd been there. Enki II xx
15/03/2015, Gosport

Spring has been teasing us for the last week or two with sunshine and temperatures of 15C one day followed by grey, cold days where the temp never even got in to double figures. Spring flowers are beginning to come out and new born lambs can be spotted in the fields. It can't come soon enough for us wimpy ex-pats! Too many summers in a row have left us with no resistance to the cold.

This was a hard month for us. We are just waiting to get it out of the way so we can start on the Big Stuff. Andy hasn't been that well, he's been feeling tired a lot of the time, but we did manage to get a few days away which did us the world of good. We went up to Bristol for four days and visited a selection of friends that we have wanted to see since we came back. They live in lovely bits of Somerset and Gloucestershire so we drove through the Mendips, the Malvern Hills and the Cotswolds reminding us of how beautiful the UK is. Thanks to all of them for feeding us delicious meals and making us laugh and giving us a respite from illness.

Andy had to come back to face another bone marrow biopsy to assess whether the treatment has managed to get rid of those pesky myeloma cells. His first biopsy was very painful and has given him a bit of pain ever since so he wasn't looking forward to it. Luckily this time one of the Consultants did the procedure and it was quick and relatively painless. We have an appointment this week with the Stem Cell Transplant Consultant who will hopefully tell us it's all good to go.

We've made it a policy not to read up too much ahead of time about what's in store but thought we ought to as it's now so imminent. It doesn't sound like much fun. A large dose of chemotherapy which will make his hair fall out, 7-10 days of injections to stimulate the bone marrow to release stem cells which are then harvested, more chemo to kill everything else off then 3 weeks in isolation where he gets given them back and we wait for them to start kicking in. I asked Andy how he was feeling about it, expecting him to say bloody awful! "Excited" he said. "Can't wait to get started!"

| | More
23/03/2015 | Diana and Alex
You are both bloody heroes. Thinking of the Matildas as we make our way towards Panama. Can't beat an English spring, whatever they say about the Caribbean. big hugs Enki II
S/V Myeloma - End of Cycle 4

It's very difficult to write a blog when you don't do much! It's too cold and wet here to venture out much and we spend a lot of time indoors watching daytime television. When I was working I always dreamt of having time to read or to have a lie-in in the mornings and or take up a new hobby. Now that I can, it's not quite what I thought it would be like! Even on the boat, we were always busy doing chores or mending something or planning the next trip or just sitting and looking around, not to mention having to meet people all the time and drink beer and talk!

A high spot of our time now is our monthly hospital appointment where we go and get the results of the treatment Andy is having. As the Aussies would say, he's had a bit of a rough trot this month feeling pretty tired most of the time but if the blood results are good, it makes it all worthwhile. Yesterday, we saw our Haematology Consultant who told us that Andy's light chain paraproteins, which are measured to monitor his myeloma, are now 20.4 mg/lt. That's officially within the NORMAL RANGE!!!

We've also seen the Stem Cell Transplant Consultant this week who is very pleased with Andy's results and has pencilled him in for a transplant on 10 April subject to a few more tests. This means one more cycle of chemo before he starts the preparation for the transplant. I think we've got to the tough bit now and Andy's got a few miserable weeks ahead of him but we are concentrating on the fact that in 11 weeks, he could be myeloma free!!

Meanwhile S/V Matilda had a great Atlantic crossing and is now in St Maarten in the Caribbean where Andy B and his crew are doing a few jobs on her and getting her anti-fouled. Judging by the photos on Facebook, they are also representing us well by drinking ice-cold Caribs and dancing on the beach with Del and Gary on Panormitis. Goodonya lads!

Photo is of Isle of Wight taken from Lee-on-the-Solent

| | More
18/02/2015 | Del Whitmore
It goes without saying that we miss you two dancing in the sand and knocking back a coldie or two. Your turn will come and we can celebrate together.
23/02/2015 | Sandy Duker
Glad to know the chemo is working - hang on in there. Congrats to Matilda on her Caribbean arrival.
Blue Water Section - Cruising Association
09/03/2015 | Nigel Ellis-Gray
How nice to read positive thoughts from you although facing such uncertainties. I'm really hoping Andy will feel well enough for me to visit on 20th March when I'm in Portsmouth for sailing related training courses.
Up-spirits from S/Y Lammergeyer, Nigel & Laurence
S/V Myeloma - End of Cycle 3
20/01/2015, Gosport

Unbelievably another month has passed on S/V Myeloma. We had a pretty good Christmas with Andy well enough to drive us up to London on Christmas Day to spend the day with Barb, Dan and the grandchildren. He had been worried that he would be having one of the down days or that they would have streaming colds which would mean he wouldn't be able to go. We had a lovely meal with them and then had Boxing Day with my brother and family eating more fabulous food.

Since then, we've pretty much stayed indoors keeping warm and trying not to be too envious of the photos on Facebook that our friends in Australia keep putting on of them on the beach, at a barbecue, camping in the bush, eating at outdoor restaurants or drinking cold glasses of something!

Today we had to go and get Andy's blood results following his 3rd cycle of chemotherapy. Last month his light chains were 62 mg/l which we were thrilled with and we were hoping for another good result. Andy, of course, being the competitive person he is, had decided he had to get down to at least half of that. I've spend the last few days trying to get him to be realistic so that if they hadn't come down, he wouldn't be too disappointed. You know that small print that says these rates can down as well as up? Apparently it's the same with these light chains. They can suddenly start going back up instead of down and then the treatment has to be changed. Well, I am pleased to report that they were 34 mg/l which means that they are almost 'normal' (between 5.7 - 26.3) and he is on course to have his stem cell transplant in April.

All he's got to do before then is have another bone marrow biopsy, an echocardiogram, a 24 hour ECG, a lung function test, a kidney function test, several more blood tests and an infusion to strengthen his bones! Piece of cake!

Meanwhile S/V Matilda is on Day 11 of her Atlantic crossing and is hopefully on course to arrive in the Caribbean in another 8/9 days. We haven't heard from Andy B so not sure how he's getting on so if you see them, let us know!
Meanwhile Happy New Year to you all. Wishing us all a fabulous 2015 with good health and happiness. And please keep putting on the gorgeous photos. Gives us something to aim for!

| | More
20/01/2015 | Annette Hair
Hi Jane and Andy, so darn happy things are going well for you.....keep up the good work! Cam expects to arrive in the next 8 or 9 days too so I'll tell him to keep an eye out for Matilda next time I SMS him. Lots of love to you both xxx
01/02/2015 | Lizzy & Mike
Happy New Year! Pleased all is going in the right direction in Pompey, think of you often. Will look out for Matilda if she arrives in our neck of the Caribbean (aka BVIs). And expect you to follow as soon as poss!

Older ]