My journey

[rajahh]

I feel the neeed to keep a journal of my journey with Gordon as the prostate cancer becomes more advanced and he approaches death.

I am not desolate about it, I am in reality just deflated I think.

We had to call out the GP on Friday as he is beginning to show signs of pain. However he still managed a short walk on Friday and yesterday, 13 minutes, and 17 minutes.

He has always balked at taking pain killers, but now he is asking for them.

It is only paracetamol at the moment, but I feel there has been a huge shift in his mood since yesterday. He is now " looking forward" to dying. When I saythat I do not mean with excitement, but just showing me he knows it is coming, and he is accepting it. He will not fight this, and in a way I donot want him to.

We have just had a lovely chat with him appreciating all I do for him, but then he immediately says can he have permission to use the phone as he wants to speak to his wife !!!!

I do not think he is actually in much pain but he is now worried about it coming. I am going to keep a strict record of every time I give them to him as he will forget and will probably ask for them throughout the day.

Just need you all to think about us from time to time. and to encourage me to stay strong.

Jeannette

 

[Grannie G]

Hello Jeanette

You are coping with 2 very serious illnesses and their different symptoms, which makes it even tougher for you.

So Gordon appreciates all you do for him but then sadly forgets your relationship to him.

I admire his strength in facing his cancer and being able to stick to his principles. I admire your strength for supporting him.

But no one should suffer unnecessary pain and I expect you are relieved Gordon now accepts relief.

Keep posting Jeanette. I`m sure you`ll have the strength of TP behind you. xx

 

[angelface]

Such a brave lady you are.

(((hugs)))

Gill

 

[Helen33]

Dear Jeanette,

I shared a similar experience with Alan when he was diagnosed with cancer. I noticed the onset of pain whereas Alan had previously been pain free.

I am going to keep a strict record of every time I give them to him as he will forget and will probably ask for them throughout the day.

It will be important to try to find whether he is asking for more because he has forgotten or whether it is because the paracetamol doesn't give pain relief for long enough. There is no need these days for anyone to experience pain so monitoring and managing with the GP or Hospice or Macmillan nurse might help you to feel supported as you go through this.

We have just had a lovely chat with him appreciating all I do for him, but then he immediately says can he have permission to use the phone as he wants to speak to his wife !!!!

I could feel the extreme of emotions you must have felt.

I really hope you will feel stronger by being a valued member of Talking Point Jeanette. I feel sure everyone will be wishing you well as you travel this particular part of your journey.

Love

 

[bemused1]

I feel the neeed to keep a journal of my journey with Gordon as the prostate cancer becomes more advanced and he approaches death.

I am not desolate about it, I am in reality just deflated I think.

We had to call out the GP on Friday as he is beginning to show signs of pain. However he still managed a short walk on Friday and yesterday, 13 minutes, and 17 minutes.

He has always balked at taking pain killers, but now he is asking for them.

It is only paracetamol at the moment, but I feel there has been a huge shift in his mood since yesterday. He is now " looking forward" to dying. When I saythat I do not mean with excitement, but just showing me he knows it is coming, and he is accepting it. He will not fight this, and in a way I donot want him to.

We have just had a lovely chat with him appreciating all I do for him, but then he immediately says can he have permission to use the phone as he wants to speak to his wife !!!!

I do not think he is actually in much pain but he is now worried about it coming. I am going to keep a strict record of every time I give them to him as he will forget and will probably ask for them throughout the day.

Just need you all to think about us from time to time. and to encourage me to stay strong.

Jeannette

jeanette I think about you every day and wonder how you have coped for so long. Thank you for taking the time to help me. Strength for both of us I think.

 

[kingmidas1962]

Please keep posting - its hugely therapeutic for you it seems. I have nothing but admiration for you and I wonder how you do it!

My late FIL was diagnosed with multiple untreatable cancers nearly 3 years ago now - he didn't have dementia to deal with as well though. He was never afraid of death - he knew for some time I believe that there was something very seriously wrong with him and when he got the diagnosis he kind of mentally' packed his bags' so to speak, and prepared to leave.

It's an extraordinary thing you're doing - I'm sending you a virtual package of hugs to keep you going xxxx

 

[Pheath]

Dear Jeannette

What you’re coping with day to day is beyond my ability to imagine and with such fortitude too. Many would have crumbled a long time ago. The most important thing is that Gordon’s pain is kept under control so he’s comfortable, to see someone you love in pain is almost unbearable. That he’s facing the end with such acceptance, I hope will help you too. Even though it must be a desperately sad time, it seems as though for both of you, being at peace and open to what inevitably lies ahead will make the transition a gentler one.

Love Px

 

[DeborahBlythe]

Dear Jeannette, what a hard time you are going through, and you always post with so much dignity and patience. Sending you love and kindest thoughts. x

 

[at wits end]

Thinking of you both at this time.

Death can be a beautiful end for some and I feel sure it will be like that for you and your husband. I treasure the last days I spent with my mother after she asked me if she was dying. Truly magical.

 

[Butter]

I think of you regularly. I shall continue to do so.

There are people on TP who know a great deal about end of life care and I had some help and information too late for when my mother was dying last year. I could pm it to you if you like.

I wish you peace and rest, with your husband and on your own. I wish your husband peace and rest too. And I want to endorse the point that there is no need for pain.

 

[Big Effort]

Dear Jeanette,

It is important to have people like you on this forum. You aren't complaining, or shirking, and you are doing what we all aspire to do: to be there for our loved ones through thick and thin, until the end.

You can be sure you will have people here reading what you write, and supporting you in every way we can. Because, actually we are all in this together. It is thinking we are alone is the route to madness. No, Jeanette, you are not alone.

And something tells me you are going to manage all this just beautifully. We all need inspiration, and you are Inspiration.

It will come to this point for all of us on Alzheimer Avenue. One day we shall face what we all dread. I have dreaded incontinence. Not so much for myself, but because I know it is a big issue for my mother, all tied up in her own values, beliefs, fears and so on. This morning she snapped my head off, called me a monster, cruel and so on. Was I more a monster than any other morning? No. What really happened is she had a difficult time in the toilet. With what? Well she won't tell me and now due to Alzheimers she can't tell me. But the evidence is there for me to see. A neatly wrapped poo on the draining board. Little bits of dirty toilet paper scattered all over the place, all the time. We currently have more loo paper in the bin than in the loo. And Mum (the real Mum) hates this. She fights this loss of ability and privacy. So she lashed out at me. Did she mean that? No, but Alzheimers crosses all wires.

So, Jeanette, we all need each other. We need to cry and grieve. We need to be strong because there is no one else physically there to be strong instead of us. I shall link arms with you on your Alzheimer Walk as you accompany your wonderful, brave, but ailing husband. You are not alone. Please share, for what you have to say sheds light and illumination for the rest of us to emulate when we get to the stage you and your husband are at. Just as you will get support from others who have already crossed the tricky patch you are currently negotiating.

I send you both my love and admiration. Keep posting your journal. It is the best way forward. Hugs across all the miles, for this is a meeting of minds and spirit, xx BE

 

[LynneMcV]

Dear Jeanette, this is a very difficult time for you and Gordon. I just want you to know that you are both in my thoughts. I am glad that Gordon is accepting some kind of pain relief. Keep strong xx

 

[CollegeGirl]

Oh Jeanette, my heart goes out to you. I really don't know what to say, I'm not as wise as others. Just know that I do think of you both and appreciate your kind words to me when I've needed help, and I hope that it now helps you to know that others are thinking of you in your time of need.

With love xx

 

[Loopiloo]

Dear Jeanette

What a difficult time for you, and how well you sound to be coping with it. How you feel beneath the coping..... we all need encouragement at such a time to stay strong and I hope you find that in abundance on TP. As Big Effort said, we all need each other and we also need to cry and grieve. Sometimes while being strong. Although that is not always possible because we fear if we cry there will be no stopping and somehow it gets bottled up until afterwards.

It is a blessing that your husband is accepting. A friend lost her husband in October and she said the hardest thing was that he was terrified of dying, poor man. But still so very sad and difficult for you, for him.

Paracetamol is such a mild pain relief, I echo all everyone has written about good pain control as your husband's illness progresses. Do you have a Macmillan nurse?

Keeping a journal and a record of pain medications prescribed sounds an excellent thing to do.

I just wanted to join the others in saying I am thinking about you both and wishing you strength, along with the acceptance, on your journey which must be tremendously difficult.

My thoughts and Love
Loo xxx

 

[Dazmum]

Dear Jeanette, you have probably thought of this, but my aunt had so much help and advice about pain relief for my uncle, who also had prostate cancer, from the local hospice, which liaise with his GP. They didn't have a MacMillan nurse in their area. Towards the end of his life, he was prescribed oramorph patches of increasing amounts which ensured that he was pain free as much as possible.

And to edit my thread to echo what Celia has said, they were a great support to my aunt too, even though there was no prospect of my uncle being moved to the hospice.

I really am thinking of you and Gordon at this time. love to you xxx

 

[CeliaW]

Can I echo Dazmum's suggestion about the hospice? Not only will they be able to manage any of your husbands symptoms including pain, so that he is comfortable - they will also be a very valuable support and resource for you.

Sending gentle hugs to you,

Take care

Celia
xxx

 

[garnuft]

Oh Jeanette, I too think about you all the time.
Your advice, support and good common sense has always pulled me up by my britches and given me a shoulder to cry on and hold me up.

I hope you are receiving the support you need to keep Gordon comfortable at home.

Your days seem to be filled with so much angst and worry,
you are both further down the path now.

The most important thing is pain relief and I hope that can be sorted out before anything becomes too much.

Yours must seem a very lonely place, we are here, small voices in a dark cave,
but here we are my friend.

Thinking of you, Chief Catering Officer and the soldier whose billet you clean,

Much Love,

Gwen XXX

 

[kingmidas1962]

My FIL had the most wonderful support from MacMillan nurses - when he was diagnosed as terminal they moved very quickly, and quietly and without fuss to keep him comfortable at home with a special bed, pain relief and a constant presence day and night for him and my MIL to help them cope. I remember my MIL telling me about the tiniest nurse who arrived to do a night shift, who managed to manhandle this big, heavy former army officer out of bed and out to the bathroom etc before he was bedbound - a mini marvel she was, supporting physically and emotionally. When it was his time they very tactfully withdrew and he slipped away pain free with his family around him.

They are a completely wonderful resource and I hope that you are receiving / will receive similar kind of support when needed.

Its funny but you, and my FIL, have been on my mind a lot today.

 

[Il Gufo]

Hi Jeanette,

I am new to this forum, and have been humbled by the trials that some of the members have to deal with, with not only dementia, but often other severe illnesses too. I joined because my dear mum was diagnosed only this week with mixed dementia. Your post struck a chord with me though, because I lost my gorgeous dad to prostate cancer seven years ago, after he successfully overcame both bowel cancer, and then liver cancer. I would urge you to get in touch with the Macmillan nurses, who were truly marvellous when my dad was ill. I don't know if you have a local hospice, but if you have, ask your GP for a referral to them. We couldn't have asked for better end of life care for my dad, and although he knew he was dying, he was not afraid. He knew that he could trust the staff at the hospice to control his pain, and ease his passing. They really were angels sent to do their work on earth. I will think of you each day, and send you both big hugs xx

 

[rajahh]

an update on Gordon.

He had more blood tests this week and the results came back next day. PSA level has increased by more than 50% in 2 months.

There are signs that the cancer is spreading and now affecting his liver and kidneys and bone.

He is in slight pain but really not much at all.

I will know when he is and am keeping a very watchful eye on him.

I just received this news about 3 hours ago, and although anticipated there would be some indication that it was being active, I was stunned atthe rate of increase.

Macmillan Nurse has been in touch and we had a long chat.

I have always been ok about talking about it in " the future" but now the future is becoming the present!!!!

Jeannette