Biding Time

“What is she like? I was told—she is a melancholy soul. She is like the sun to the night; a momentary gold. A star when dimmed by dawning light; the flicker of a candle blown. A lonely kite lost in flight—someone once had flown.”~Lang Leav, Australian poet and writer

      I cannot believe it has been nearly a month since I last posted to this blog. The list of projects on our boat has felt like different things on different days: the saving of my sanity, a mountain I must climb, a Honey Do list started by my Best Beloved to be finished by me, a black hole sucking up all my money and energy, a daily reason to get up and put one foot in front of the other when depression looms like a dark abyss, a long list of hurdles on a race course that requires stamina rather than speed, a Goddess-send, a one-thousand step program for rebuilding life after heart rending loss, a list that never seems to end, and endless treadmill of projects, a means of renewing our home...a way forward. 
     It will be six months next week since Les died. His death seems surreal now and so does my life. How, I ask myself, did I arrive here, on a boat, in another country, on my own? While I cannot believe Les is gone I find his memory is fading and I have to fight for every scrap. Part of that is emotional anesthetic, part of it is simply time, and a lot of it is the fact that last year Les changed drastically as his life wound down. I have to really reach to remember Les as he was four, five and six years ago when he was the picture of robust health. Death does that as it eats away at us, moment by moment, cell by cell. I didn't have time to take it all in; I was too busy caring for him and trying to make every moment count for us both while denying my own grief process. I didn't want to burden Les with my grief or the unbearable pain I felt in knowing I was losing him. I chose to cry in the shower instead of in front of him. I chose to be stoic and forge onward. I know now what a terrible mistake that was. I denied us both the chance to experience those precious, painful moments together and to say and do the final things we needed, wanted and should have experienced with each other.
    So, back to the boat. A year ago we asked folks who donated to our GoFundMe account if they would be comfortable with our changing the focus of our account from a trip back to America and family, and instead spend the money on NB Valerie, getting her ready for me to live on without Les. Without exception all of you who donated said,
     "Spend the money as you see fit." 
So we did. My deepest heartfelt thanks to all of you near and far who offered up your fiinancial support for our life on this boat. Items with an asterisk were completed by Les. It is time for an accounting now, of chores and how the money was spent, so here without further ado, is the list:

• *Whale Gulper no-maintenance shower pump mounted inside the sink cupboard replacing the old unit mounted under the bathtub and behind a wooden panel which required laying on one's belly on the floor, removing the front panel of the bathtub and using a wrench to loosen the cap on the filter to clean it--every two months
• Boat blacked to protect the hull from rust; good for four years
• New anodes which also protect the hull from rust and decay
• Two new steel T studs mounted on either side of the bow to make it easier for me to moor up on my own
• A bicycle rack attached to the stern
• *New bathroom sink and tiles to replace the old leaking sink and rotted wooden surround
• *New brass cup style cabinet pulls on all the galley and saloon cupboards and drawers
• *Replace all the LED light bulbs which were 9 bulb white lights, with 15 bulb warm lights throughout the boat
• *Build a corner shelf above the bed with a small swiveling reading light mounted underneath, to match the shelf and light on the other side of the bed
• *Longer tiller handle to accommodate my very short arms
• The engine bay cleaned and painted
• The engine cooling system flushed and refilled
• Solid steel engine bay cover replaced with an aluminum checker plate cover so I can can lift it and access the engine and weed hatch
• The horn, navigation lights, tunnel light and bilge pump switches moved from below my feet on the side of the stern locker (Les used his feet to operate them but mine don't reach that far), up in front of the gear shift so I can see them and reach them
• The stern seats re-fitted (Les cut the storage boxes down but was not able to refit the padded seats that fit on top
• Hook closure on outside stern doors
• Clean off the roof
• Cut down the wood box and move it forward
• Replace the old solar array Les installed with a new system professionally installed by OnBoard Solar
• Replace the broken boat hook and boat pole, and rotting gang plank
• Replace the rotting and missing side fenders, bow fenders, and all the bow, stern and mid-line ropes which were four years old and fraying badly
• Replace the clapped out stereo and mount the new model in the wall of the front closet
• Stereo speakers installed in the ceiling of the boat
• *Replace the ten year old telly with a new HD telly
• *Replace the old toilet seat with a new oak seat
• Replace our old, torn mattress with the inner springs poking up, with a new custom made quality Memory Foam mattress

     When someone is ill and fighting for their very life every single day for years, every moment it taken up with two things: the fight itself and attempting to live life as normally as possible. There is no time for anything else, like on-going boat maintenance. The last three years Les and I spent engaging in these things daily until in September of 2015 Les gave up. He was tired; tired of fighting. Tired of taking 28 pills a day, tired of eating a special diet, and tired of having to gauge everything we did by whether or not it would fight cancer or contribute to it. His scans were coming back favorably and he felt good; no he felt great! And finally Les was tired of spending nearly four hundred pounds a month on all the supplements, organic food, etc. etc. etc. that the alternative treatments required. He was tired of being stone cold broke every month without money to do things. Neither private insurance 'nor the NHS will pay for any cancer treatment but the standard chemotherapy and radiotherapy which of course costs hundreds of thousands more than the alternative, but that is a different conversation for another day. 
     I didn't care about being broke, I only ever cared about keeping Les alive and helping fight to regain his health and live our life with joy, and I knew that undergoing alternative cancer treatments requires a minimum two year commitment to the treatment without fail. In the scheme of things two years is not very long but it can feel like an eternity when one is dealing with cancer. I told Les this but he just couldn't hear me and as far as he was concerned it wasn't giving up He felt great, he looked good, his scans were coming back favorably so it would be okay. I knew otherwise but discussing it with Les only made him upset and angry. With my heart sinking, we pulled the plug on all the supplements, diet, organic foods, herbs, etc. Within four months the cancer invaded his bones. 

My sweet, sweet man, windlass in hand on the Lapworth flight up to Birmingham, late September 2015.

     I understood how Les felt. Indeed if anyone would grasp how the entire scenario wore him down day by day and made him feel it was me, for I have lived through two ovarian cancer diagnoses, major cancer staging surgery and a two year alternative treatment program (Gerson Therapy) requiring a major diet change (no meat, dairy, sugar, bread, oil, salt, caffeine or alcohol), thirteen glasses of freshly extracted organic juices daily, and up to four coffee enemas daily combined with 36 daily supplemental pills and two liquid supplements for a combined cost out of my pocket of $840 a month. I remember feeling exactly as Les did. So I if I could not convince him to continue treatment, all I could do was support his choices as best I could. Sadly Les could not undertake Gerson therapy as one has to have a fully functioning colon for the treatment to work. I knew we were in for a tough battle in 2014 when we were denied the stoma reversal due to cancer spreading to Les' liver.
     When we received the terminal cancer diagnosis Les asked me to save him, but without spending all our money. There was nothing I could do and my heart broke into thousands of pieces. Les was one of those people who had to see, feel, taste, and hear something, and know it in his bones before he believed a thing was fact. The trouble with that is by the time one knows at that level that cancer is terminal it is too late. All I could do I did and I took his hand and we walked together into what was left of our limited future together while Les spent every moment he could either planning on making my life without him easier or actually involved in projects to do the same. A lot of this time is sadly blurry for me as I had undergone my second knee replacement surgery and I was on pain medication that dulled my cognitive and emotional processes. After Les died and I returned to the boat I found dozens of lists Les had made, with notes to me about how to save money, how to apply for bereavement benefits, and how to save money on low cost cremations. All this Les did while being filled with ever increasing doses of Morphine which makes cognitive functioning very difficult. Nevertheless he researched, investigated and made notes for me to find once he was dead.
     One thing I do want to mention is the fact that the Oncologists at the RFH wanted Les to undergo a biopsy surgery on his spine. They were convinced the cancer they were seeing was not colon cancer. They were 95% certain it was bone sarcoma and it was a "second line cancer," caused by the five days of radiotherapy Les was forced to endure back in October of 2013. Unbeknownst to us at that time, while the treatment was only five days in length Les was given massive amounts of radiation treatment to the extent he could never endure another radiation exposure again--but of course along with so much else, we were not told of this either until June of 2016 when the Oncology team in London sought to give him radiation treatment on his spine and were shocked to uncover that Les had been maxed out on radiotherapy in 2013. Les asked the RFH Oncology team if spinal surgery would cure his disease or prolong his life. The answer was no, it would only serve to underscore 100% their diagnosis of bone sarcoma, and so Les refused the surgery and we came home.
     I know people don't know what to say or do when I break down and cry. That's okay. Let me cry. But please, please don't say, "Well at least you had six wonderful years together." Don't say, "At least you had a deep and true love that so many people never get to experience." Don't say, "Chin up Jaq, life goes on." Yes someone I considered a friend told me that the day after Les received the terminal cancer diagnosis. I got up and left their boat and I refuse to ever speak to them again. Because truly nothing anyone can say will make me feel better and I am angry that cancer stole the golden years Les and I deserved and were looking forward to spending together. Six years isn't even a blink of an eye. It is half a heart beat.
     I do not need anyone to remind me of the depth of mine and Les' love for one another. That knowledge is alive and well in my heart and soul. I live every day with the awareness that I will never see the look of absolute adoration in his lovely eyes ever again. I will never receive another text on my phone from Les saying, "I love you so much. Xxxxxx times a trilly billion more times than that." I've had to change my phone ring tone because I could not bear to hear it and know that Les will never go off to town again for bits and bobs, then call me to say, "Just having a coffee Jaq and I will soon be back home in your arms my sweet." I will never hear Les call my name or his incredible laugh or see his dimples wink at me ever again, and I will never ever experience his strong, warm arms reaching for me in the dark, pulling me close to his side, or feel his lips on mine. 
     I thank Adrian and Adam on NB Briar Rose for sitting with me as I fell apart one day when they were visiting, and not trying to make it better because they instinctively understood that nothing anyone says or does will ever make this loss less than utterly devastating for me. They patiently waited for the moment to pass. I thank Carol and George Palin on WB Still Rockin' for doing the same with me for three entire days, and to Ken and Sue Deveson on NB Cleddau for the same. Practical help, a pat on the arm, a hug, a tissue (an entire box of tissues), and a cup of tea are all helpful. So are Les stories. I am hungry to hear any and all stories about him, no matter how small or insignificant. We had so few years together and so many folks knew far longer than I did and they have wonderful, funny, touching stories of Les that bring him instantly to life again. 

Andy and Tina on NB Ytene recently. It made my heart sing to sing them cruise past. It also made me sad that Les wasn't with me to see them.

     More thanks are due to Andy and Tina Elford of NB Ytene. Although they graft hard five days a week with only Sunday and Tuesday off and Sunday is spent driving two hours to Peterborough to spend the day with Andy's 92 year old Aunt Beryl, taking her shopping and out to lunch, they both came and spent evenings with me on board NBV while I waited for the solar panel fitting and the mattress delivery. Thanks for dozens of fun and goofy rounds of the Railroad Game, bottles of wine, love and laughter, crying right along with me, getting me registered with your dentist and taking me to my appointments, and bringing me along to visit your lovely Auntie Beryl, She is a pip! Tina, thanks for spending a girls day out with me. I haven't done that for a long time and it was such fun.
      The Elfords cruised with Les for three years; they--and we--are more like family than friends and the stories they have of Les are side splittingly funny. After a grueling day working to keep a fleet of  hire boats clean, functioning, and turned around for hire, Andy and Tina came and worked on my boat, repairing things, fitting new bits and bobs, cleaning the roof, disconnecting the old solar panels, taking the wood box off the roof, cutting it down and putting it back on the roof; taking me to Midland Chandlers to purchase the raft of items that needed replacing on the boat, replacing the bathroom loo fan and then turning it around not once but twice! I am so grateful for Andy's expertise in boat repair and painting which he shared with me over the last month to prepare me for the remainder of the jobs that still call for my attention:

• Sanding and painting the inside panels of the bow doors, the side hatch doors and the inner and outer stern doors
• Clean out the tracks around all the windows inside from a decade of dead bugs, mold growth and moisture damage
• Sanding and painting the wooden window sills
• Sanding and painting the metal window frames inside and out
• Sanding and refinishing the dinette table
• Sanding and refinishing the galley counters
• Sanding and refinishing all of the interior walls and ceiling. It's been nearly 11 years now and it is well past time 
• Replace the rubber seals on the bow doors, the side hatch doors, the back stern hatch and door, and the outer stern doors 
• Cover the stern steps with vinyl oak look planking and new rubber treads (the old carpet treads are lifting)
• Finish painting the exterior of the boat
• Order and apply vinyl lettering and coach line tape

The large double wood box with the huge 24o watt house solar panel and smaller 100 watt panel mounted on top.

The two new 165 watt each solar panels and the old 100 watt panel installed together on the roof.

     Finally I wish to thank Tim Rees-Davis of OnBoard Solar who did an absolutely splendid job of installing the new solar panels and all the new equipment so that it would work well for me and also pass the BSS exam which is tomorrow. Tim was the soul of patience as he worked, explaining things in a manner I could understand and removing old parts of our system no longer required so that I can sell them on e-Bay. The new installation means I can easily reach all the panels to clean them, tilt them, and I can easily clean and paint the roof beneath them.

NB Valerie with the smaller cut down wood box moved forward to make way for the new solar panels.

I would also like to thank Debra at Custom Size Beds for her assistance and understanding when I screwed up my measurements and the mattress had to be returned to their factory in Kent, cut down to the proper size and a new mattress cover sewn and re-delivered to me. The folks at Custom Size Beds were friendly, calm, understanding and worked hard to get me a new mattress in a matter of days.

The new mattress is 18 cm of reflex foam and 7 cm of cool blue LayGel foam with a quilted cool max cover and a total depth of 25 cm and a ten year waranty. It is more comfortable and provides a better night's sleep than my $1800.00 Sealy Posturpedic mattress back in the States.

     So what's next? 
     Tomorrow morning the Boat Examiner will come and hopefully all will pass muster. Lee Freeman is the person who has done all the past BSS for NB Valerie and he remembered Les and our boat. I hope by early tomorrow afternoon to be cruising through Braunston turning left and heading for Rugby. North at last, as the narrow canals are calling me.