Calranthe

I just wanted to update everyone, after my surgery they told me that the cancer was limited to my bowels a type 2, it had not breached or spread to the lymph nodes (they removed 38 and no cancer cells), but there was concern about my lungs, a nodule had been noticed on the CT scan before the operation and afterwards on the post op CT scan it looked larger, a PET scan was ordered last week and yesterday I got the result, it is non cancerous, I am classed as at risk so every three months check up for the first year and blood tests every 2 months. Now I just need to deal with the loss and depression but at least my body isn't trying to kill me. So just recovering now.

Okay I had take out, a mild (super mild) burrito with pulled pork, nope nope nope my tummy and bowels did not like that, definitely on the wait another month and maybe try again.

Wooooooot! Type 3 tumour which meant it had passed through 3 layers of my bowels BUT importantly had not breached externally, 38 lymph nodes removed (all the ones that serviced the part of the bowels removed) no cancer growth or cells, Vascular areas feeding that part of the bowels clear of cancer cells, Surgical area as in the parts they have to cut into to remove, which if it had cancer cells would have spread it to rest of body, Negative for cancer cells. I still need to see the cancer consultant to decide on chemo but because of the results the risks of chemo may outway the the rewards thus I may not need chemo. Time for a take out I think. And yes this does mean I can actually consider some of the really kind offers here, felt like I was in a holding pattern, now I just need to take one day at a time but at least my body isn't going to kill me off.

Tuesday is when I find out how much chemo I need, will let people know how it goes.

Thank you all, I do not know what the coming months will hold for me but yes I think that I will take up some of the kind offers and thank you again for all the words which all come from the right place.

Thank you, just taking one day at a time, the cancer sort of sidelined the grieving process, I am still sort of going through the motions, I may end up taking you all up on the kind offers once I am in a better place mentally and physically.

A lot of you thought I was crazy and wasting money last year on the boat Kathleen, after all we got only 48 hours on the water at a cost of £4500, a boat we sold for £750, last year both me and Paola knew things were getting worse, the money didn't mean anything, we were desperate to have one last bit of fun and for Paola to do things she never had before, Paola had never been on a boat, we had never owned a boat and it was worth it. To actually own a boat even though it fell apart, it mattered, to travel those few miles of the Trent and onto the canal it mattered, the people we met while broken down, the community, it all mattered. As I said in my last post here, things were getting worse, her kidneys failed and we went on dialysis, dealt with it all at home, no problem, I was trained on all the medical stuff and we got on with life, walks and pushing the wheelchair became less frequent, Paola was hurting more often and more fatigued. All was going well or so we thought, dialysis was tweaked and things were beginning to look up unfortunately it was not meant to be, seems whatever had killed off her kidneys so quickly was also damaging her heart. Day after her 2 monthly appointment she had acid reflux and nausea seems a woman can have a heart attack without any of the normal signs, its called a silent heart attack, she ended up in the coronary care unit. Here is the story of what happened. https://imgur.com/gallery/JSggx0v Now the universe seems to have a sense of humour because, 7 days after she died (20th November) I was diagnosed with bowel cancer, I went into hospital on the 3rd January to have part of my bowels removed an I am back home now, I go to see the team to find out the prognosis and how much chemo I will need. Life has little meaning for me now, Paola was my world and please unless you have personally had this kind of loss do not say "time heals" or any of the other platitudes, I have no family, no friends, no children, no career, I have probably had 1 visitor to the house since November 20th that was not to do with my illness or the funeral. I spent 21 amazing years with Paola, 18 hours a day not one hour away from each other as her carer, no respite, no pub visits or time away, we were a couple in the truest sense of the word, I may just never get over this. Why is this in the boat section, because that time spent on here planning, that time spent making friends and on the water was the most special time me and Paola had, that 48 hours was worth millions not £4500, not one second of it was a waste and the memory of her sitting on the back of the boat taking pictures as I piloted us up the river will never leave me. Don't listen to anyone who tells you its not worth it, don't let anyone tell you not to experience now because me and Paola were just a normal couple of students when we met, we had plans and dreams, you could lose everything tomorrow and ask yourself what would you regret? what didn't you do? what did you put off till next year?

Well my wife is in bed asleep and reading and typing on here is better than the alternative of just sitting around and wondering why I can't fix this for her, when Paola is up my attention is fully on her, I cooked, clean, do laundry and everything else but at the same time I have a lot of spare time just waiting for her to need me. And yes I know that I am not supposed to feet trolls like peter but it is a wonderful distraction.

Well you just sort of proved my point sadly, you still do not get it, this isn't a faerie story there is no happily ever after, its not even about the wheelchair, I said to people project is over she can no longer go on a boat, do you think I said that because I was upset or sulking, did you think I enjoyed explaining the whole situation, every damn time I have to put it down in writing it hurts but people just like you with the best of intent keep offering advice that is not possible anymore if she can not even get out of her chair without help, if the muscle deterioration and damage to her body means even a short car journey to the hospital can be a danger then its not possible, our one hope was that it was medication related because medication can be changed, we found out it wasn't thus no chance of any boat journey or even canal walk. We did earlier in the year look into hire before it got bad, we know all about those wonderful boats you can hire but the problem was very simple and this was the crux of the choice of getting our own boat, to use one of those boats you need to hire them, you need to book sometimes months in advance and as we never knew how Paola would feel from one day to the next we could not do that, literally one day she could be fine next day unable to get out of bed. so having our own boat at that time meant without planning if Paola was well one day we could have just gone. Its all a moot point and I seem to be going around in circles, project is ended, those that believe us fine those that do not *shrugs* offers have been made and I will keep an eye on things incase anyone does want to take us up on our offer. I just want to point out this is not me being pig headed or not taking advice Paola is just too ill now to do anything outside of the house and it will only get worse. Thank you again to all those who offered advice and friendship, I wish you all well.

Peter I do not know who you are or really care, you for some reason assumed a lot about me and my wife, you seem to happily cast aspersions about me and my wife, I think it is driven by psychological fear, you are one who will never take me up on the offer of a phone call or a visit because it would prove you wrong, it would show that you were wrong and people like you can not cope with that, so safe and warm in there nasty little attitude, if you actually were proved wrong your head might explode or you may need to change which is even more terrifying for a person like you because it would mean you needed to have a cold hard look at how you act. Ask yourself one simple question "what if I am wrong about them?" and you will understand why it is far easier for you to insult and assume things, I have offered a phone call and even a visit after all we are always happy to talk to new people to prove what I say.

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.

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

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.

6 months minimum is a nice comfortable amount of time to source a solid Buckingham or Viking hull (or the equivalent) have it transported up to a local mooring on the TMC and have it worked on, unfortunately a lithium battery fire is almost impossible to stop once it gets going and you just need to let it burn out but lets compare it to three other volatile substances we all have experience with. Petrol and Gas and carbon monoxide each of those can be killers and apart from carbon monoxide are very fast and deadly and yet we all deal with them daily. Now lets look at a Lithium battery, one of the big differences is a lithium battery is not just a battery it has circuits and software built into the case it is part of the expense and the very IMPORTANT point is this a so called thermal runaway when a cell breaches and begins to react and heat up is not an instant event, temperatures slowly build internally and externally, it can take hours for it to breach containment and while you can not stop it as long as you have external thermal sensors at well as internal. Meaning you have time to remove the battery and set it away from the boat, call the fire service and deploy your D type fire extinguisher, this is very very different from a petrol, gas or even CO event. All those thermal runaway videos on youtube usually do not mention one thing, to get these batteries to thermal runaway they first pry open the cell and remove/break the circuit whose sole purpose is to stop a thermal runaway. (primary concern is grey market suppliers) For the places where the batteries would be stored to get trashed to the point those batteries took enough physical damage to breach that boat would have to be completely messed up anyway.

I have always been an odd sort, a special snowflake and or a stubborn SoB. I could have bought an cookie cutter solar panel system for my roof but that was too easy and I see too many flaws in the system, instead I built three prototypes Lets call them A B C (A) was the old fashioned "it works so why change it" A normal 150w solar panel hooked up to a charger linked to 2*100ah lead acid batteries (the cheapest £60 ones on Amazon) (B)Newest of the old A german 280w solar panel with ambient light properties Advanced charger and 2*100ah GEL Deep Cycle batteries from photonic universe (£180 each) (C)Relion Used both the german and old solar panels plus a nice charger and 2* Relion 100ah Batteries (lets just say the price I spent on kathleen just about covered the batteries) I then ran tests over the last three months ranging from the mundane of running a bedroom devices of them, to large appliances, purposefully taking them to 70% then 50% then 0% charge. As you can imagine the £60 led acid are just about dead, surprisingly the Gel batteries have handled been dropped to 0 a few times and still hold a really good charge but long term they will fail, the Relions are absolutely amazing batteries. Before Google and pre lycos days I built my own search engine, this was in the early 90's, Also I created my own online game (mud) which holds the record for the longest running online game (started it in 98 and it is still running now on a server in my bedroom we have between 10-20 concurrent users and a playerbase of 1000 from all over the world I will not give out its name simply because it is a mature game). Not saying this to brag or anything just to make a point that I like to improve things. or change things, or mess things up An all electric GRP cruiser for canal and river should be possible, it will give more room and less vibration than a diesel or petrol outboard, it should be quite reliable and why not I have at least 6 months before Paola will be up anything like this. Why not take a good hull and rebuild it inside and motive power for the future ? Kathleen was not a loss to me or my wife, the experience we had on her in that short time was worth 10 times what we paid and if she had been 5ft or more bigger I would have kept her and done this to her. Money has never really meant anything to either myself or wife beyond keeping ourselves in a stable warm home base, we are not rich by any means but when you own your own house, do not smoke, do not own a car and do not enjoy nights out drinking you end up having a comfortable amount of capital, then when people mention financial loss I just think back to 2 years in cancer wards and the latest visit to the renal failure wards a couple of weeks ago, As long as I pay bills and everything is stable then extra cash budgeted for things like this has no affect on us if anything does not work, or as a next door neighbour told us 17 years ago, "I spent all my time building out the double glazing company I owned, put off spending any money, ended up with over 1 million in the bank and then my wife got an aggressive form of breast cancer and was dead in 3 months" he would have given anything to go back and have that time with her, spending that money and enjoying life.

True but the newer models like relion have multiple safety features, yes something can always go wrong but then again even though the burn time is less a petrol tank can cause issues and a run away diesel engine is not a fun thing to experience or deal with. I read that article and the major concern is grey market, all Lithium Ion batteries from reputable makes have specialized circuits and software built into them to counter this, size does not really come into it, yes if the cells get ruptured but lets be real here to do that kind of damage to a lion battery casing would take sever damage to the boat itself. We will have 4 primary batteries for propulsion in two separate aft holds the software itself will keep an eye on temps in real time to the Dash and phone software. they will also be in quick release clasps and while my 100AH AGM test battery has a weight of 30kg my test 100AH Relion (which actually gives double the available charge) has a weight of 13kg. This will be completely separate from the two relion batteries that power everything else.

Wind is out then and that leaves just solar to top up as a bonus. thank you.

Exactly Solar/wind would just be top up, my prototype setup proved the same to me, I think 3-4 days capacity in the batteries plus maybe either a gen or small petrol outboard for emergencies yes you pay a lot for these Lithium Iron potassium but they have a cycle usage of 10+ years and a good charger will mean they can take as much as is fed to them without any harm and almost 100% of the available power is usable without damage. A trickle feed from the solar, after all in a real world situation lets say a lock breaks down and I am stuck on the siding for a week, during that week the motor would not be run anyway and the amount one of these modern batteries drain when not in use can be less than 1% a month. Modern phone technology has really increased lately for example I have a last years model Sony Experia which is setup as my emergency phone, I charged it to 100% 3 months ago and then turned it off and keep it the inside pocket of my main coat, I just powered it up and it is still at 100% getting boat batteries like these you pay for it but they can be a complete game changer especially related to charging. Imagine if on your NB you had a 100AH battery that you could use 99% of that power every day without harm and with a good ALT that same battery could recharge at what ever amps is fed to it.

I agree, if you are cold in the winter on a boat then something is wrong with the heating setup you have, it is acceptable for the first cold weather on a new craft but most NB and even GRP I have seen can and balance the heat/health situation quite well and if not another duvet/cover/coat/layers of material or a thermal blanket will get you uncomfortably warm far better than risking life. I was in my youth prone to crazier stuff, thus I went camping up Snowdonia in the winter, took a foil blanket with me, that plus a basic sleeping bag and I was damn toastie in the tarp tent.

I am still very new to all this boating stuff but after a walk on the canal at the weekend (Trent and Mersey) I always find myself chatting to boaters now I went past a black or dark blue/green NB (light was failing) and I saw an elderly gentleman working on his mushroom vents, I asked what he was up to and he said that he was sealing them for the winter, I said (assuming he meant resealing to stop ingress of water) ahh having leaks ? No he replied i'm sealing them so I don't get cold at night (understand I was on my way home to wife so this conversation happened as I slowed for a second) I said isn't that a bad idea and he just said something under his breath and I moved on. Now I do not remember the name of the boat it was around the stoke area of the canal. My knowledge of this kind of this is limited but common sense screams to me that those vents are there for a damn good reason and blocking them would be like me on a GRP sealing the vents and running the heater/cooker just not so bad due to most NB having more places air can ingress but a NB would have more items that could create carbon monoxide.

Laughing apart I think its going to be interesting to see how far you can take a boat like this into the self sufficiency realms, I mean we all know you can go backwards in time to steam engines and a lot of boaters I have talked to naturally eek every little bit out of a boats performance, constantly tweaking and just how well it can go. Another not too crazy idea which would blow about £4,000 would be to have a custom solar power membrane built, you have probably seen them on land speed electric cars and long distance electric boats and planes, they map the entire upper surface of the boat/plane/car and fit custom cells, a 25ft boat could easily end up with 3-4KW of solar (the average for a house) and the bonus is they come with a none slip all weather coating that you can walk on. That would mean even a worst case scenario of winters day you would be getting at least 400w But that is a lot of money and a lot of specialised stuff that could go wrong.

Well lets not stop there a nice jet turbo on the back and hydrofoil style wings below I mean what could go wrong trying to fly between each lock.