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Calranthe

By Calranthe
in Boat Building & Maintenance

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dccruiser Rising Star

dccruiserDonate to Canal World

Posted
Posted
4 minutes ago, cereal tiller said:

Most of us have the best of Intentions ,but  Sometimes it is best to step back .;)

I know but its not my way, i will help anyone if i can, just disappoints me the guy wasnt even throwing away his own money but that of others that had obviously worked hard for it ... a few weeks ago i spent 3 days on the cov with a newbie sorting out his boat for its B.S.C. ... didnt even charge him for my fuel just the M6 toll road .... didnt even text to wish me a happy christmas, but I will no doubt do the same again for someone else, just as others have helped me over the years when i have broke down.

Rick

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PD1964 Experienced

PD1964

Posted
Posted (edited)

To be honest most people on here are sound, we may call each other buggers and biscuits, but when their in our waters and need help the decent boaters would help, no matter what name calling has preceded. It's just life on the canal. 

Edited by PD1964
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Murflynn Veteran

Murflynn

Posted
Posted
10 hours ago, Mike the Boilerman said:

 

I'll donate my technical expertise on the subject... :giggles:

 

12 hours ago, Dr Bob said:

I'll donate a couple of kilos of polyethylene to make the battery case.

 

14 hours ago, WotEver said:

I’ll donate one battery lead made to your spec. ;)

You supply the materials...

OMG!!   I'm overcome with all your seasonal generosity.  I hope OP can send me the recipe for putting it all together. 

 

Mike: Should I make one ginormous 1000AH 12v battery, or would I be better making up hundreds of AA cells?

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PD1964 Experienced

PD1964

Posted
Posted
10 hours ago, Peter Reed said:

I doubt very much that we will see the op on this site again.

Here's a link to his Facebook if anyone wants to keep in touch, DaveandDebby.

https://m.facebook.com/profile.php?id=100002322677079.

I find it odd that he tells the word of his wife's medical problems on various Forums but there is no mention of it on here, I thought he might use Facebook to tell his friends and family of updates on her health as I'm sure they would be concerned.

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IanM Experienced

IanM

Posted
Posted
34 minutes ago, PD1964 said:

Here's a link to his Facebook if anyone wants to keep in touch, DaveandDebby.

https://m.facebook.com/profile.php?id=100002322677079.

I find it odd that he tells the word of his wife's medical problems on various Forums but there is no mention of it on here, I thought he might use Facebook to tell his friends and family of updates on her health as I'm sure they would be concerned.

Depends what Facebook settings he's got configured.  He might be posting daily about things which only his family can see.

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Calranthe Collaborator

Calranthe

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oh wow, seems a lot of people made a lot of assumptions so let me set things straight and if anyone has doubts or issues with what I have said then pm me and we will chat on the phone.

But let me answer some of the main questions or as many as I can see here.

I was on another forum earlier this year and I intentional did not mention it here except to a few people in private that "I had altercations with issues on another forum" I never mentioned which one because I do not like to trash talk anyone.

I went to that forum to ask for advice, I made mistakes firstly people kept thinking I was trying to fleece money off them, the more I denied it the more I gave information that it was not a con (to put it into context yes I had a gofundme, a suggestion by friends when they found out how ill my wife was, I was busy looking after wife and a friend delt with most of it) the money raised was £800 and was used to fund day trips and bucket list for Paola, (at the time my experience of boating was almost nil).

When a Doctor tells you that things are going bad and you know your wife has a dream to get on the water well then initiative outways skills, I was going to get her on the water no matter what any intelligent person said, Hell I just threw numbers at the gofundme I think it went from 100k/50k/20K/10K/5K. Yes we personally had access to money and still do but people seemed to want to help on this so it sort of steamrolled.

£800 was the maximum that came from donations, the offline donations were put in by myself so kathleen's costs were covered by me and wife (800 went into days out at a firing range (one of her bucket list items) she actually spent a week using air pistols and Rifles and loved it, days out during the summer and night stays, all of this was audited by DWP because of her disability benefits and nothing underhanded happened.

Best advice came from the other forum before I left, go to this forum its a canal place and a good place to start so I ended up here.

It does not matter to me what they think of me, the more I tried to explain that I only mentioned my gofundme and wifes illness because people actively asked me why I was asking such questions, as soon as I mentioned those things it did not matter how many times I denied that I was after peoples money no one believed me.

I had begun to wind down the gofundme when I was considering boats on here (I went to look at a boat suggested on here), I took 4500 cash with me at that time.

My facebook is set to friends only but here is a copy of todays post which hopefully explains why I wasn't around for a few days to reply or read all these things.

"Only Trevor knew Paola was in hospital last week for a kidney biopsy to see how bad the damage was, we just got back from the consultant, her kidney's are currently at 33, she probably has a year maybe two before they stop functioning completely nothing can be done about it the damage is progressive and I can't fix this for her."

We were hoping that the damage was medication related, imatinib was the drug and there was second generation versions that do not do as much damage but after the consultant appointment to discuss it, seems the damage is not related to imatinib and instead damage due to a type of diabetic problem (her diabetes was cased by the imatinib but that is neither here nor there) the damage is done and its progressive.

It is all like some ironic joke because that is not the worst of it, the drug that keeps the cancer away requires between 2-3 litres of water drank a day and as her kindney's fail her ability to get rid of bodily liquid will be impaired so she may end up with a choice of dying from cancer or from a slow build up of liquid in her system, sorry I'm just not in a good place today.

I actually came here today to apologise for not being around and to explain after Todays appointment that this project can no longer happen, Paola isn't going to get better, I am so glad we got that short time on Kathleen.

To those fun people who think this is some weird fantasy well %^& you, I really wish it was.

Now if anyone still doubts me then please pm I will happily share in PM invoices for battries, parts bought, hell if you want and live near stoke on trent you can come and visit us at home and I can show you the prototypes in the back yard.

 

So to cut it short I came here today after our hospital appointment to explain to those here who have been amazing to me and Wife that this project is closed and the really sucky news and instead I see this stuff.

Brilliant end to a fantastic day.

Oh and if anyone is wondering my "fantasy" plans now ?

Finish off the solar build for the house, make sure the house is setup for Paola's very slow (hopefully) deterioration, get some custom prescription lenses for the Oculus Rift so that Paola can visit places while at home.

 

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Calranthe Collaborator

Calranthe

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This may be good bye from me, not because I am doing anything crazy hell there is every chance that if any when anything happens to Paola I will end up on here with an even more ludicrous plan and with your help I will go through with it.

Knowing what I know today it makes that short voyage in Kathleen all the more important, before Paola started to go down hill in the autumn we went to Marina's, bought a boat, pushed her wheelchair over 100 miles over a month along the canal, lunch at middleport factory, exploring Trentham gardens all of them reached via the canal, talking with and spending time along side boaters, getting our own boat even if just for a few weeks was amazing and well worth the £4,500 spent on it, no waste money well spent.

For almost 18 years Paola was trapped in a small bungalow never having gone on holiday and never been on a boat, one summer made all the difference for those few days we were boaters.

I believe that I never mentioned my gofundme on this forum or asked anyone for anything for free except advice, to those that offered to take me around the Marinas or offered to show me there caraboat thank you, sadly by the time we got to that point Paola's health was already deteriorating.

Even though I learnt my lesson on the other forum that people judge you based on there experience or attitude I still regret that they never took up my offer to just chat on the phone and sort out the crazy misunderstanding, I was only ever looking for advice and only mentioned my gofundme and her illness for context (when you are asking about specialist items and access for disability you kind of need to put things in context)

Most of the people on this forum are great people and a lot of the advice offered was sound I thank you all for that.

If any of you are ever around the stoke on trent canals and would like to meet up for a chat message me on here and I will give you my phone number.

Do not feel bad for me and Paola, most people never have any amount of time to plan end of life stuff, we have had 21 years.

Best Wishes

Jason & Paola

 

 

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jocave Collaborator

jocave

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Posted

Jason why can't you just buy something to get you both out on the water, forget about the big ideas just buy something you can use, we bought ours knowing we would only have maybe a couple of seasons use out of it, turns out things got worse quicker than we hoped so have now moved it closer to home on the Llangollen, we have had nothing but negative comments since we moved it, but its what we have and I will ignore all of them ,as long as we have next spring/summer to enjoy days and weekends out then I will be happy, just get out there on whatever you can afford, plenty out there for a couple of grand just go for something simple ,a GRP with a four stroke outboard is cheap to buy and cheap to run, far better than the vr goggle nonsense, do the right thing and get her afloat asap...

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Dr Bob Veteran II

Dr Bob

Posted
Posted
8 minutes ago, jocave said:

Jason why can't you just buy something to get you both out on the water, forget about the big ideas just buy something you can use, we bought ours knowing we would only have maybe a couple of seasons use out of it, turns out things got worse quicker than we hoped so have now moved it closer to home on the Llangollen, we have had nothing but negative comments since we moved it, but its what we have and I will ignore all of them ,as long as we have next spring/summer to enjoy days and weekends out then I will be happy, just get out there on whatever you can afford, plenty out there for a couple of grand just go for something simple ,a GRP with a four stroke outboard is cheap to buy and cheap to run, far better than the vr goggle nonsense, do the right thing and get her afloat asap...

Absolutely. Hit the nail on the head. Jason, you will get a lot more support on here if you did this - and looked for help - rather than try to do things that will be time & money consuming and likely to fail. From what we read about you, you love to get stuck into projects that challenge you. Believe me, just buying a boat and sorting out the day to day issues will give you plenty to occupy your mind - as a novice to boating you will be fully occupied. We were. Toilets, engines, batteries, window leaks, ropes, anchors, ecofans, hot air heating, gas bottles, fridges, stoves, water pumps, tv antennas, ......it never stops. Buy a boat :banghead:

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colinwilks

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9 minutes ago, Dr Bob said:

Absolutely. Hit the nail on the head. Jason, you will get a lot more support on here if you did this - and looked for help - rather than try to do things that will be time & money consuming and likely to fail. From what we read about you, you love to get stuck into projects that challenge you. Believe me, just buying a boat and sorting out the day to day issues will give you plenty to occupy your mind - as a novice to boating you will be fully occupied. We were. Toilets, engines, batteries, window leaks, ropes, anchors, ecofans, hot air heating, gas bottles, fridges, stoves, water pumps, tv antennas, ......it never stops. Buy a boat :banghead:

Hear, hear! Jason, you and Paola have my good wishes, but I would urge you to consider the idea that the boat you are on is not as important as the places it takes you to, and the experiences you have along the way.

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jocave Collaborator

jocave

Posted
Posted
10 minutes ago, Dr Bob said:

Absolutely. Hit the nail on the head. Jason, you will get a lot more support on here if you did this - and looked for help - rather than try to do things that will be time & money consuming and likely to fail. From what we read about you, you love to get stuck into projects that challenge you. Believe me, just buying a boat and sorting out the day to day issues will give you plenty to occupy your mind - as a novice to boating you will be fully occupied. We were. Toilets, engines, batteries, window leaks, ropes, anchors, ecofans, hot air heating, gas bottles, fridges, stoves, water pumps, tv antennas, ......it never stops. Buy a boat :banghead:

I'll second that, even our boat that was in good condition is still an ongoing project, gas locker relocation, diesel tank for the eberspacher, new whale gulper for the shower, led lights, and I'm now in the process of making new steps to make access easier, plus the little jobs like ,tunnel light tripping its breaker ,canopy leaking through the seams, windscreen crazed, its a never ending list of jobs that will keep you busy

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MtB Veteran II

MtBDonate to Canal World

Posted
Posted
22 minutes ago, Dr Bob said:

Absolutely. Hit the nail on the head. Jason, you will get a lot more support on here if you did this - and looked for help - rather than try to do things that will be time & money consuming and likely to fail. From what we read about you, you love to get stuck into projects that challenge you. Believe me, just buying a boat and sorting out the day to day issues will give you plenty to occupy your mind - as a novice to boating you will be fully occupied. We were. Toilets, engines, batteries, window leaks, ropes, anchors, ecofans, hot air heating, gas bottles, fridges, stoves, water pumps, tv antennas, ......it never stops. Buy a boat :banghead:

 

Totally agree. Except that understanding batteries alone keep me fully occupied as an off grid liveaboard!

All the rest one can get on top of in a few months. 

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Dr Bob Veteran II

Dr Bob

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Posted (edited)
19 minutes ago, Mike the Boilerman said:

 

Totally agree. Except that understanding batteries alone keep me fully occupied as an off grid liveaboard!

Yes, but that is because you bought  2 smartgauges.:giggles:

 

......I forgot to add in my previous post, what is the best coal to buy, who to buy a new cratch cover from, how to put your existing pram cover up, how to top up a battery with no access to them, how to change the 'DUCK' valves (yes – DUCK!!!!) in a Vacuflush vacuum generator, what is the best 4G supplier, where to buy a handcuff key, which pub not to go to in Braunston, what do I do when one of my Galvanic Isolator LEDs comes on, why does the washing machine trip the inverter on a 30°C wash (maybe not relevant on a yoghurt pot), why not to buy a Smartgauge, what is the best wifi antenna to get and how to outbid Cereal Tiller in an Auction?

Edited by Dr Bob
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Calranthe Collaborator

Calranthe

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I seem to have not been straight enough, after getting rid of Kathleen I mentioned that part of the reason was a so called "taking stock" its a medical term used when trying to find out just how bad things are, it was 2-3 months of tests Everything from Renal to haematology, hundreds of blood tests and things like CTI.

Lets wind it back a bit, in 98 Paola fainted on her way to college, 6 months of misdiagnosis, everything from sprained ankles to a back injury, the true problem was her bone marrow was malfunctioning, Acute lymphoblastic leukaemia a childhood cancer and treatable in children but Paola was 21 at the time,  odd for full remission were 35%, then we find out she has something called Philadelphia chromosome which in some cancers is a positive but in ALL  means chance of full remission 0% its a death sentence but the brilliant Consultant in Birmingham tried a new treatment "shoot her with a shotgun, then throw her off the cliffs of dover watch her hit the bottom and try to bring her back to life" Not literally but that is what he said, we remove her bone marrow clean it and put it back in but before we do we hit her with every type of chemo we can and full body irradiation to try nuke the cancer to 0.1%, of the trial of 12 people only Paola survived because once you put the bone marrow back in no promise it will restart and if it doesn't no platelets no white cells no red cells.

Well it worked and then they put her on a drug that kept the cancer away (a certain protein bcr-able has to rise above 0.4 for leukemic cells to initiate) and for almost 19 year this medication worked it kept the cancer away but the side effects were horrible, imagine having the flu symptoms 24/7 for 19 years none stop, imagine at 21 becoming arthritic in all your major joints and so on.

But we coped, I retired and became her primary carer.

For some unknown reason last december her bcr-able count started to rise the medication just stopped working and we had to go on to a newer medication, this is when Diabetes kicked in and other things, seems diabetes does not play will with the medication keeping her alive and the irradiation changes things in your body permanently.

The journey on Kathleen was her last good weeks before things started to get worse

Back to taking stock the last part was a kidney biopsy last week and the taking stock consultation (results Thursday morning)  we were hoping beyond hope that the damage was caused specifically by the medication but it wasn't, it was instead instigated by the treatment but continued via diabetic, result kidney function down to 33% and dropping.

As your kidney function drops you start to gain water weight because your kidney's stop being able to transfer water and waste liquid to urine unfortunately all of the medication that keeps the cancer away require you to take in 2-3 litres of water a day, as her function drops (dialysis can only remove a small amount of liquid from the blood or that can be lethal too) she will be presented with a choice

Choice 1 continue with the cancer treatments  and slowly the water levels of her body will rise to the point of water on the lungs, water around the heart.

Choice 2 stop the cancer treatment and 2-3 months later full blown ALL and death (no chance of chemo or irradiation due to the state of her body it would kill her).

While I understand the intent and yes if there was any chance at all that Paola could be on a boat now I would drop the money without a thought, sadly when I say she has deteriorated (they do not take stock often it is very expensive) 3-4 months ago she could get into a boat and walk with a walking stick, now she can not even get up of the seat in the living room without my help.

I thank you all for all he offers and advice, really do wish it was so.

We have a really good team of consultants both the ALL specialists and Renal, I felt sorry for the consultant we saw today, he really wanted to give us some good news, he has ordered extra teams to try help Paola, Dietitian and anaemia specialists who will be working with us in the next few weeks, there is a good chance he thinks we can slow it down so that we can have a year or more.

Sad thing is while I spent my youth in Egypt, Greece and other fun places Paola came straight from home to college to cancer never even been on a plane, never smoked or even went out partying, life can really suck.

I wish you all well and please keep following your dreams do not put them off till tomorrow.

 

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