I'm back time to start the project.

[Peter Reed]

1 hour ago, Calranthe said:

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.

 

In the words of Catherine Tate, worra load of bollox.

[IanM]

We get it, she’s terminally ill and deteriorating. We don’t need the back story essays. 

There are plenty of boats about which are kitted out for people who are 100% wheelchair bound so my suggestion would be to look into those to hire. If you have the disposable cash you say you have then you should be able to afford to hire one whenever you wanted to if getting on the water meant that much to her. 

[Calranthe]

5 hours ago, Peter Reed said:

In the words of Catherine Tate, worra load of bollox.

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.

 

[Calranthe]

3 hours ago, IanM said:

We get it, she’s terminally ill and deteriorating. We don’t need the back story essays. 

There are plenty of boats about which are kitted out for people who are 100% wheelchair bound so my suggestion would be to look into those to hire. If you have the disposable cash you say you have then you should be able to afford to hire one whenever you wanted to if getting on the water meant that much to her. 

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.

 

[Naughty Cal]

You have made it clear you are not now getting a boat so why  not go and spend some time with your terminally ill wife rather then wasting it on here?

[Calranthe]

2 minutes ago, Naughty Cal said:

You have made it clear you are not now getting a boat so why  not go and spend some time with your terminally ill wife rather then wasting it on here?

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.

[Murflynn]

5 minutes ago, Naughty Cal said:

You have made it clear you are not now getting a boat so why  not go and spend some time with your terminally ill wife rather then wasting it on here?

I kinda have to agree.  This is really not the place to discuss OP's wife's medical issues in huge detail.   ..............  perhaps somewhere else, maybe like a support group. .......  but I'm sure you've tried that. 

[Naughty Cal]

31 minutes ago, Calranthe said:

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.

There are other forums more suited to what you need.

[smileypete]

28 minutes ago, Naughty Cal said:

There are other forums more suited to what you need.

Maybe it's cathartic (sp?) in a way.

You do have the choice not to read it if you wish.

Agree it's maybe not the ideal place, especially as these days this forum is tactless expert hell.

 

[magpie patrick]

I think the thread has run its course and at the request of the OP It will now be locked

Given the circumstances I think we would all wish Calranthe the best in what must be trying circumstances