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