Terminal and. Scared - UPDATE !

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kman

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Hi Kevin

Just seen all the lovely photos of you, Wendie & Pork Butt and your outings on FB...... He so does seem to be sulking with his new leather harness on......and love the photo of him kissing his girlfriend....and being a baby on Mummy's lap....

Shared yesuntiltheend and the marriage posts too....

BTW - am with you for the whole journey :happy:


I think he was Giggling at mummy, and yes he isnt over keen on the harness Jan, but he looks good,

LOL.xxx.

And thanks for sticking it out hun xxx.
 
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Pipp

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Positive and Definitely freindly thoughts coming your way, Please don't think otherwise, it's just sometimes the thread Overwhelms me LOL, and I have to ask people to step back a little, you werent on thelist Pipp because I dont know you like the others, that's all honestly,

Anyway stay Positive, Stay Strong and Stay Here !

I'll never push aside anyone with the best interests of my family in mind. ....

Hugs.

PS. Pipp. A list all of your own.

@Pipp
I think and hope that means i am ok to keep posting?
Sometimes people we don't know too well come up with something insghtful like @Jaylee did regarding the Youtube video blog. Lots of people 'liked' that. Maybe that could be something to focus on to take your mind off the pain?
 
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Pipp

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@kman

@Pipp and @Totto are right, you should not be suffering this amount of pain, I think its disgusting that the pain clinics and your gp are allowing you to suffer in this way.
I have to say what I find strange is your reluctance to get this sorted, when my poor old dad was dying from Emphysema and finding the pain of scrabbling for breath too much the help he got was 1st class, he had a night nurse who was there to give him pain killing injections throughout the night which meant he and my mum could get some sleep and relief, and these were the days before pumps for drugs, surely this is something you should be sorting for Wendie's sake if not your own.
Personally I would not be waiting for 2 weeks to chat to my gp about this, and would have a few words to say to the consultants at the pain clinic.
I think he is scared. It is a big step forward, but he is also courageous, so I trust he will do something about it soon.
 

kman

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I think and hope that means i am ok to keep posting?
Sometimes people we don't know too well come up with something insghtful like @Jaylee did regarding the Youtube video blog. Lots of people 'liked' that. Maybe that could be something to focus on to take your mind off the pain?


It very very much means PLEASE keep posting Pipp, I work on Focus Techniques with the Medical Psychologist I see, Laura is wonderful, and I am able to talk to her better than anyone other than Wendie,

But the fact is sometimes I just want to talk about all sorts, and not to be " Offered " Advice, especially when I have already done these things, or have it in hand,

And YES it's shocking to still be in pain, but there are a number of reasons for some( a little at least ) of this, and sometimes I just don't want to post or reveal that, I try to give as much as I can, All I ask, is if I appear reluctant then please just step back, it will eventually be mentioned in a post when Im ready,

This is not meaning posts about the pain, but posts in general, and if I need Nagging then I can assure you all that Wendie is More than Capable of doing it LOL.!!!
 
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Pipp

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Ah right, kevin. I am getting a better understanding. When you cry out in pain and say it is excruciating it can be distressing to read. Then people like me step up to offer help. But that is not what you want.
Can you understand why some of us have believed your medical team are remiss in letting you suffer so much without providing relief? It is almost as if your medical team have not been taking you seriously. That grieves me.
 
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Gezzabelle

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Once Again

Let me just state here

Everything I have said is the Truth and 100% Honest to the Best of my Knowledge

I am Dying, I have only around 8 months to live

At least 1. Member of the Forum other than my family has met me, and has seen I am for real,

Those who for whatever reason seem to doubt me, please I am being completey Honest,

I'm sorry if the way I bave expressed and told my story has made you in anyway doubt me,

And again you are ALL invited to my Funeral, Though I won't invite you to join me in the box !

Please stay with me as this journey nears it's end. ...

Love and Hugs Always.

xxx.

@Mrsass

@Sable_Jan

@Enclave

@Gezzabelle

@Totto
We are ALL staying with you sweetheart...every step of the way...no matter how long or how far. You are an inspiration and a wonderful person and there has never been a grain of doubt in my mind about you as a person or your condition and suffering. Lean on us as your journey continues...let us take some of the load and give you the love and support you so deserve. God bless you and let you stay with us as long as is possible without the agonising pain you suffer. xxx Love to you and gentle hugs xxx
 
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Totto

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Totto

You Sweet Angelic Beautiful Person,

4 weeks after your husband passed and you are Caring, Loving and Kind enough to offer advice to someone else, I am not at all sure I'd have your strength if my lovely wife Wendie had passed that recently,

You Dear Sweet Lady have me in streams of tears, and my Deepest Respect,

Firstly myself and Wendie want to offer our most Sincere Condolences, Love and great big Hugs from our Beautiful little puppy Pork Butt xxx.


You must be Devastated, how you manage to care about a stranger like me I don't know sweetie,

My pain is excrutiating and devastating, but the thing I have most trouble explaining here is I have the most wonderful teams looking after me, I attend 2 different Pain Clinics and have a Medical Psychologist heping just with coping with the Pain,

The difficult thing is that there is no way of getting away from this pain due to what is happening to the nerves in my body,

I am NOT unhappy with my care, or the pain relief efcorts from my team, They are wonderful and caring, and they explain anything and everything each step of the way,

Of course I'm not happy to still be in pain, but I do not at all believe or think It is in any way being neglected, I will talk to them about a Pump ! From what you have said it would be wonderful for me, and most of all for Wendie as I hate seeing her face when I am in such awful pain, it hurts her even more than Me xxx.

I Love You already as a Dear Friend, and I hope you will stay with me here on the thread for as long as you feel comfortable or able to considering how raw it must all still be for you sweetie xxx.

Please know our Prayers and Thoughts are with you, as I stated before you are nothing short of Angelic, Wendie says to tell you she also is a right mess with tears all down her face,

Thank You so very very much for being so very Brave, Kind, Caring and most of all Loving your Tenderness and Sweetness have driven deep into our heart's.

Love and Hugs Always Dear Lady,

Kevin Wendie Dayne, Delta and Pork Butt.

xxx xxx xxx.

@Totto
No, I'm not angelic at all and as cuddly as your ordinary hedgehog but I do care about people in pain. I know what pain meds worked for my husband. I also understand there is a huge difference between cancer pain and neurpathic pain. My dad had severe peripheral neuropathy and was frankly a pain in the butt but then this was in the early eighties and presumably things have moved forwards since then. Blood testing for example. Dad was diagnosed at fifty as was I but I keep my bg normal as I do LCHF and can test whenever I want.

Anyway, I'm sure there are lots of people on DCUK with experience of neuropathic pain that can advice you. There must be pain relief that works well enough for you so don't have to be in such pain.

What pain medication are you on now?
 
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kman

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Ah right, kevin. I am getting a better understanding. When you cry out in pain and say it is excruciating it can be distressing to read. Then people like me step up to offer help. But that is not what you want.
Can you understand why some of us have believed your medical team are remiss in letting you suffer so much without providing relief? It is almost as if your medical team have not been taking you seriously. That grieves me.


Pipp my Medical team are Brilliant, they are not in anyway remiss, they are constantly there when needed, can we please now drop this,

I want to move on, I have so little time, I want to spread the warning about the Dangers of Not Keeping Diabetes Well Controlled and of the Tragedy people could face if they dont take heed,

Stay with us Pipp, your advice like everyone here is Invaluable, and all part of the message getting spread so that absolutely no one else has to suffer my fate,

That Pipp is my greatest wish. .... that No One else follows the path I did !

Anyway I look forward to your future posts

Please continue to post Pipp,
 
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kman

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We are ALL staying with you sweetheart...every step of the way...no matter how long or how far. You are an inspiration and a wonderful person and there has never been a grain of doubt in my mind about you as a person or your condition and suffering. Lean on us as your journey continues...let us take some of the load and give you the love and support you so deserve. God bless you and let you stay with us as long as is possible without the agonising pain you suffer. xxx Love to you and gentle hugs xxx


Tears xxx.
 

kman

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No, I'm not angelic at all and as cuddly as your ordinary hedgehog but I do care about people in pain. I know what pain meds worked for my husband. I also understand there is a huge difference between cancer pain and neurpathic pain. My dad had severe peripheral neuropathy and was frankly a pain in the butt but then this was in the early eighties and presumably things have moved forwards since then. Blood testing for example. Dad was diagnosed at fifty as was I but I keep my bg normal as I do LCHF and can test whenever I want.

Anyway, I'm sure there are lots of people on DCUK with experience of neuropathic pain that can advice you. There must be pain relief that works well enough for you so don't have to be in such pain.

What pain medication are you on now?


Seriously you are very much an Angel, and a braver person than I,

You are in my Prayers as log as and whenever you may need them Totto so please don't worry about me, you just take care, and know that I feel so much for you,

I am getting the help I need,

And I know my suffering will not be for much longer sweetie,

With Love Always

Hugs

Kevin Wendie Delta and sweet little Pork Butt.

xxx xxx xxx.

FB_IMG_1431531904065.jpg
 
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Totto

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Seriously you are very much an Angel, and a braver person than I,

You are in my Prayers as log as and whenever you may need them Totto so please don't worry about me, you just take care, and know that I feel so much for you,

I am getting the help I need,

And I know my suffering will not be for much longer sweetie,

With Love Always

Hugs

Kevin Wendie Delta and sweet little Pork Butt.

xxx xxx xxx.

View attachment 13825
You post here because you want to share? So go ahead. I sat with my husband as he died. It took a while. I'm not afraid of death, We all have to die. Me too.

So what pain relief are you on, or is that is too personal a question to ask?
 
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kman

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You post here because you want to share? So go ahead. I sat with my husband as he died. It took a while. I'm not afraid of death, We all have to die. Me too.

So what pain relief are you on, or is that is too personal a question to ask?


Why are you pushing me ?

I am currently on :-

MST

Oramorph

Pregabalin.

Carbamazapine

Duloxetine

Brufen

The Duloxetine, Carbamazepine and Pregabalin are as pain meds not as Primary usage in my case

I do wonder if you understand what I'm going through you have to be quite so acidic, I didn't see your previous post or the reply before they were removed, but I was given a heads up by several people,

If you want to ask such stuff then please pm me

Hugs.
 

Mike d

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I would have thought with the sharing of your story about your pain, Totto's question was relevant ... she's in a position to know more than I (and many) would and probably advise so the "why are you pushing me" comment escapes me.
 
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Jaylee

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@Totto has a point. she is a recently bereaved widow. I also understand the point you get to with a loved one when you just cant help any more. ail one can do is save dignity.. @kman you have bravely chosen to document interactively with those you befriended on here, and inevitably leave behind... You have my utmost respect regarding this. & i will honour you in accordance to my own belief system.

What have you to say to Totto?
 
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kman

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I would have thought with the sharing of your story about your pain, Totto's question was relevant ... she's in a position to know more than I (and many) would and probably advise so the "why are you pushing me" comment escapes me.


Mike, it's NOT just sharing about my pain, and I have asked certain people to back off a little, I will post want I feel I want or need to post as and when I feel up to it, I was hoping Totto would have experienced and understood that, hence I Sked why she appeared to be puzhing me, I answered her question, her previous post was deemed inappropriate and removed by the admin before I could even read it !

@Totto has a point. she is a recently bereaved widow. I also understand the point you get to with a loved one when you just cant help any more. ail one can do is save dignity.. @kman you have bravely chosen to document interactively with those you befriended on here, and inevitably leave behind... You have my utmost respect regarding this. & i will honour you in accordance to my own belief system.

What have you to say to Totto?

Thank You Jaylee, as for what I have to say to Totto well if you scroll back as far as her very first post to me, and read All of my replies to her, you will see I have said all I can or need too, I'm not sure what else She wants me to say to her. ?


Folk's if I Offend ANYONE on here I am genuinely Sorry, I never choose to offend,

So please Dont be offended, or upset, and if I dont answer questions please respect my personal space, and realise It will probably be answered when I feel ready to post on that subject,

Sometimes I just get tired and drained of all energy and drive, sometimes i find even the physical effort to type the posts too much to cope with, I am now strugginv at home to even do simple tasks for myself, like making a sandwich or a cup of tea, I rely way way more than I want to on Wendie and Dayne,

This is why I sometimes get defensive and feel uninclined to answer when I feel pushed, then I get a bit moody, I'm sorry, but that's me,

I know I chose to do this thread, but I still believe it is up to me as to what and when I post, and I ask you all to please respect that, and as I say, it will get posted eventually anyway LOL,

Totto I truly never meant to offend you, but I felt under too much pressure from aa few people pushing me to put what they want and when they want !

This thread has always been easy going and friendly and at my natural pace, that is all I am asking for here and now, again I'm sorry if this in anyaay made you doubt me, but please understand, at the moment I'm struggling, even to get up every morning, if this becomes a painful chore, instead of a friendly gentle paced record of my final days, rhen I find it hard to keep doing it, so please folk's can we do this at my pace, Im begging, because I really really want to do this right up to my last moment's,

Right now my hands are excruciatingly painful and stiff, to type I am using one finger holding the wrist of my right hand with my left hand, leaning on my left elbow laying in bed, i am using the finger next to the thumb, it is really painful, but the only one I'm a le to hold out straight at the moment, typing this post on the touch screen of my kindle fire,

Please be patient, please understand,

Lets all take something from this thread that will stick with us !

I love the support and kindness on here, I try to return it, I rarely get things completely right, but I DO Aways try,

Stick with me, Help me spread the warning about the hidden dangers of Dibetes, but that you can live with and beat it too,

Love, Hugs and Respect to All here,

Kevin Wendie Dayne Delta and Pork Butt.

xxx xxx xxx.
 
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Enclave

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I would have thought with the sharing of your story about your pain, Totto's question was relevant ... she's in a position to know more than I (and many) would and probably advise so the "why are you pushing me" comment escapes me.
Ok @Mike D ... Why is Totto's question relevant ? Is she one of Kman's medical team .. Is she a quilfied Dr in pain relief.. If so then she should have requested the list of medication Kman's takes in a private message.
These forums have a play nice policy .. We can pass on our support and experience .. But pushing to see a list of medication any people are on .. in is in my opinion out of order.
Kman is asking for our support, an online shoulder to lean on, not a review of his medication or medical team .. As he has always said, he is luckie to have a good support with his medical team and Dr .. Let's leave medication to the experts, and give Kevin & Wendie our understanding and support during this difficult time.
(If this post seems to harsh then the moderator will remove it, and I will apologise in advance for any inconvenience caused.)
 
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Mike d

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Hi @Enclave :)

So be it ...... but @kman has told us a lot about his life including his daily routine with his medications. We've all been "asked" to share, to read and take in the messages. I have as there's always inevitably something to learn from anyone who posts. That said, in THIS instance, Totto asked (what i considered) to be a reasonable question given his posting history as she has just gone thru it with her husband.

Who knows? She might have wished to pass on her comments and I think it was unfair to level criticism at her for such. Perhaps Kevin could have responded with a simple "PM" me.

That's my take on it. Mike
 
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Enclave

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Hi @Enclave :)

So be it ...... but @kman has told us a lot about his life including his daily routine with his medications. We've all been "asked" to share, to read and take in the messages. I have as there's always inevitably something to learn from anyone who posts. That said, in THIS instance, Totto asked (what i considered) to be a reasonable question given his posting history as she has just gone thru it with her husband.

Who knows? She might have wished to pass on her comments and I think it was unfair to level criticism at her for such. Perhaps Kevin could have responded with a simple "PM" me.

That's my take on it. Mike
I think we will have to agree to disagree on this one.
 
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Mike d

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No problem @Enclave ... we all see things from different directions sometimes
 
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