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Dads small cell cancer

User
Posted 10 Aug 2017 at 21:38

Dads kidneys are failing. He can't process all the injections from the. Blood clotting agents.He is on IVs in hospital.Mum said he is cold and sleeping in a deep sleep.I am going Friday.Poor man has spent all week travelling miles to another hospital for radiotherapy on his spine.
I have no idea how long you can survive with kidney failure.love to all on here xxx

User
Posted 10 Aug 2017 at 22:00
I'm so sorry to read your latest post, praying for peace for you and your family at this most difficult of times

Arthur

User
Posted 10 Aug 2017 at 22:16

:-((
X

User
Posted 11 Aug 2017 at 07:12

Virtual hugs from me too cookiegirl.

A difficult time for all of you.

We can't control the winds - but we can adjust our sails
User
Posted 11 Aug 2017 at 08:50

Thinking of you .
Debby

User
Posted 11 Aug 2017 at 09:03

My best to you at this difficult time. x

User
Posted 11 Aug 2017 at 09:33

Visiting today I don't know what to expect mum said he is in a bad way which I know his legs are bad.The hospital bed is in Mums living room but I think they are transferring Dad to the hospitals hospice due to being on drips.I hope this last bit goes easy on him.He has been through enough this last week.:(

User
Posted 11 Aug 2017 at 16:11

In these difficult times I wish I could help.
All I can do is think of you and hope everything improves for your Dad.

Paul

User
Posted 11 Aug 2017 at 23:33
Loads of love and strength Cookie coming your way .

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 12 Aug 2017 at 09:09

I saw Dad and thankfully his hallucinations and weird turn from Thursday had passed.He was in good spirits but it was very sad to see him shuffle to the loo with his legs so badly leaking.Last night he couldn't get off the bed and lost his call button so peed the bed and sat in it.This breaks my heart.My brothers and sisters have all been to see him. My daughter travels back today.
Su h a cruel illness stripping away control of so many men's lives.
I have no idea how long he has left no one has said.He isn't in pain which is good.I feel helpless it know the staff are dad ing their best.Mum is coping well with it all perhaps being a little angry which is understandable.
Thank you all you are so very kind xx Paula

User
Posted 12 Aug 2017 at 13:11

Yes, a cruel disease and stressful for Dad and family. The main thing now is to ensure as far as possible that he is pain free and comfortable. The love and devotion which helps maintain spirits in his case is a given.

Barry
User
Posted 12 Aug 2017 at 20:39
Hi Paula

I'm so sorry to hear that your lovely dad is so poorly, you are right, this illness robs our men of so much. We have been away to the beach for a week and the difference between this year and last was so evident.

I can only hope that your dad doesn't suffer and this time is peaceful for all the family. Thinking of you.

Devonmaid xxxx

User
Posted 15 Aug 2017 at 17:08

Dad seems to be getting worse with not wanting visitors and sleeping loads.He even has had some soiling and peeing accidents which are upsetting for him.Today he decided to request no more blood tests or sodium drip or it antibiotics.He has mentioned wanting to die and said he thought he had a couple of days left to live.
He is now in a side room and we wait to see if it is indeed the radiotherapy causing this or something else.
The palliative nurse told mum she thought he had time left reading his notes.....such a confusing time each day brings more stress as we can't help our lovely Dad which is heartbreaking xx

User
Posted 15 Aug 2017 at 18:53

Thinking of you all cookiegirl and wishing i had a magic wand

Frustrating for you all, not knowing what is happening and there isn't anything you can do except be there should he change his mind and want to talk to you all but also to be there for your mum.

It's understandable that your dad has had enough. All you can do is respect his wishes.

Try and stay strong for your mum, who needs you more than ever now

We can't control the winds - but we can adjust our sails
User
Posted 15 Aug 2017 at 20:06
Oh Paula

My own FIL simply decided to quite all antibiotics, food and water and passed away alone, I wish we'd been told his decision (we lived a long way away and my own dada was dying). I do however, absolutely believe that he had the right to make that decision and he simply couldn't tolerate life any longer. It's even harder when the nursing staff are telling you differently, but I'm guessing the end is close one way or the other. For you lovely dad's sake I hope that it is peaceful, it does sound like he's had enough. It's so hard for those around the ill person but at least you know he is ready to go. My heart goes out to you at this sad time.

Love Devonmaid xxx

User
Posted 17 Aug 2017 at 10:53

We are still in limbo .Thank you Devon maid for replying.Dad has signed a DNR and doesn't want treatment.Palliative nurse thinks he still has more time to live yet. Xx
I. can't see him as this is his request which we respect He will be given pills to help him sleep and improve his mood.
It is all very distressing so I will be glad to go to work today for some light relief which our poor mum can't do.
She can't cope with him at home yet as his legs are so bad and he has bedsores too although the dioreah has stopped now he is off the IV antibiotics.xx thank you all for your continued support.

User
Posted 18 Aug 2017 at 21:42
Thinkinking of you Paula.

Lots of love winging its way to you.

Xx

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 22 Aug 2017 at 21:11
Still thinking about you Paula xxxxx
User
Posted 22 Aug 2017 at 21:27

Thinking of you
Best wishes
Debby

User
Posted 23 Aug 2017 at 10:16

Thinking of you, Paula, and knowing how hard it is.

When my husband was in a similar position he too didn't want visitors. He asked me to keep them away, and said he didn't want them to see the reality, as he found it difficult to make the effort to talk. I think many men are used to being the 'fixers' in the family and this is beyond fixing. In particular he didn't know what to say to make it better for his mother and daughter.

My brother was similar and didn't want his son to remember him as he was at the end. I know how hard it can be to live through it though, and really feel for you.

Take care of you, Janet, x

User
Posted 23 Aug 2017 at 18:09

Oh Janet thank you so much for that reply.I have been going over and over in my mind the last two weeks why he won't let us see him.Last time I did I was positive and happy so its not to prevent the sorrow on peoples faces.I understand the diorreah has stopped now he is refusing I Vs or blood tests.
It is so hard when I can't help him at all.I think it is a natural reaction to cook for or assist someone who is struggling so I feel helpless.
The hospice at home can do little to help out so mum is looking at nursing homes to assist with his multiple needs as she can't cope at night with him.
His badly ulcered leaking legs are a little better however he has chest pains now so has 2 hourly pain relief type morphine and a patche on his skin.
We have no idea how his kidneys are doing as he refuses blood tests now.
He has stopped saying he wishes to die as far as I know.
They think he has had shingles due to painful and scaly skin on his head and face.
Do you mind me asking how long your husband was like this Janet? Dads been in for three weeks now.I am so sorry you have been here too it is a very hard place to be I don't know how mum. Copes every day at his bedside.
Thank you all so much I feel less lonely now.xxxx

User
Posted 24 Aug 2017 at 00:46

Is he still eating any food? Is he still drinking fluids?

We had Marie Curie nurses coming to the house at night so that I could grab a few hours sleep. Has mum tried contacting them?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Aug 2017 at 08:04

Eating about half a sandwich a day and drinking.They seem to think he has time left so mum is looking at a nursing home today.I spoke to him he has chest pains and is breathless now.Dad is a big man so mum can cope in the day but not every night as she hasn't been in best fitness since her cancer.We understood the hospice nurses he has would do more.They are in limbo it seems.It still breaks my heart we can't see him but it is the same for all us girls.
I never thought we would be in this situation tbh.He sounded in good enough spirits which is probably his new meds.
He has almost constant pain relief now xx

User
Posted 24 Aug 2017 at 08:05

He refuses all blood tests.so we don't know what's going on.He doesn't want to know.

User
Posted 24 Aug 2017 at 08:16

Not usually the hospice nurses that do the home care stuff, more often Marie Curie or the local authority.

Can't always predict how long someone has left - an infection can be immediate and devastating - but my mum and step-father both stopped eating (completely) about 3weeks before they died, and lasted less than a week after they stopped taking water/fluids so it seems your dad may have some time yet.

When he deteriorates, will you and your sisters override his wishes and try to be with him & your mum?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 24 Aug 2017 at 08:41
In our area it is the local hospice that organises home care and in fact the are McMillan nurses so it may be a similar system to your father's situation. I would ask the hospice
User
Posted 24 Aug 2017 at 10:07

Hi Paula, to answer your questions Mike was in the hospital and hospice for almost a month, but all men and circumstances are so different it is impossible to compare. On the day Mike died he had a massive bleed to the stomach, just before this his onco had said if we got him through the next 48 hours he would probably have a couple of months left. We were planning a nursing home, quite simply because there would be 24 hour help and care, and I could spend quality time with him.

Regarding your mum sitting by his bedside day after day, we are all different, but for me this was the greatest privilege. It still gives me comfort that at this time I was with him and able to help in a small way to keep him as comfortable as possible. It's hard to explain, but I know he knew I was there.

I did call my son and stepchildren to the hospital at what I thought was a critical time, and he actually came round and smiled to see them, although he was in quite a drugged state so I am not sure how aware he really was.

But I understand too how hard it is for you, my mother sat with my brother for weeks before he died and I was at work trying to concentrate but jumping every time the phone rang and feeling useless.

Please take care of yourself, Paula, it is a very hard time physically and emotionally, your love for your dad shines through and he knows and understands how much you care, Janet, x

User
Posted 25 Aug 2017 at 08:00

Thank you all so much.So sorry about your brother Janet I couldn't imagine losing a sibling.Dad moves to a nursing home today.They have a wet room which is good he has only had one aided shower in three weeks in hospital !!.
Still unsure why we were told by mum his kidneys were failing two weeks ago...my aunty was there and very choked so I'm sure mum didn't say it to panic us.The at was the last time I saw him.
Without blood tests we have no idea how he is but do know he is breathless and has cancer in his bladder prostate spine and lungs.
My new work colleagues have been lovely but its like wading through mud dragging myself in with this worry.
I can't do anything but help mum and she has taken well to caring for Dad when he did everything for her I. Her two cancer battles.
I guess something will happen to over ride his weakened body as he has diabetes and a heart problem too.
All we can do is day for day on this journey and I'm pleased his spirits have lifted even if medication has aided this.Love to you all on here and thank you for your advice at this tricky time.....I'm sure Dad has had nine lives as he keeps bouncing back xx

User
Posted 25 Aug 2017 at 08:47
Paula, you are right, day by day, or even hour by hour is all you can really do. And to be there for your mum, or whatever, whoever needs help or support. At this stage there are so many factors playing out, which is usually why the doctors cannot really predict with any degree of accuracy.

Good to hear your dad's spirits have lifted, so important and doesn't matter if it is just the result of medication. I hope the nursing home works out, something as seemingly minor as a shower can make so much difference.

Take care, Janet, xx

User
Posted 28 Aug 2017 at 12:15
Hi Paula,

I read your messages yesterday and was so relieved to find someone going through what we are.My partner was diagnosed with small cell prostrate cancer 15 months ago.We have not been able to find much information about this rare cancer.It has given us so much hope to read that your Dad has survived 5 years since his diagnosis.Tony is doing really well and defying the odds at the moment.We both feel so much more positive after seeing how well your Dad was for so long.

Thank you so much Paula.xx

User
Posted 30 Aug 2017 at 07:56

Hi Alfonzo I'm so sorry about your partner.So glad he is defying the odds too.When my Dad was diagnosed I could only find people whose husbands had survived a few months or a year.I wish I hadn't been so worried about him then as he had about two hrs well before he needed his second round of chemo.Even then he was given 3/6 months to live in 2015!!
I wish you both well and hope Tony can have many good years ahead xx Paula

User
Posted 30 Aug 2017 at 07:57

Two years not two hrs **

User
Posted 30 Aug 2017 at 18:09
Hi Paula,Thank you for your reply.Tony had chemo last year and has been doing well since.We go tomorrow for his next 3 monthly consultation so have our fingers crossed.Also,We got married 8 weeks ago so have had a whirlwind few months!

Sue xx( Alfonzo is the dog!)xx

User
Posted 05 Sep 2017 at 15:56

Dad looked better and he has been moved to a nursing home as mum can't care for him alone.The place is fantastic and he looked better.
He doesn't want to carry on as he is being unable to walk or get to the loo unaided though.Mum loyally sits with him each day and it was good to see him after the three weeks u declined visitors.
One family member has accused the rest of the family of not doing enough which cut me to the core.He was asked to sort out a home and have the power of attorney and probably didn't realise what myself and my husband and sister had done or offered on a daily basis.Still it has been a great deal of stress least not for our lovely parents whose devotion has shone through.
I have no idea where we are with Dad except day for day week for week.
Many thanks to you all though xx Paula

User
Posted 05 Sep 2017 at 15:58

I have my fingers crossed for you both Sue.Congratulations on getting married too xx Paula

User
Posted 06 Sep 2017 at 20:51

Hi Paula,Many thanks for replying to me.
It is good news that your dad looked better and is in a great place.We had great news on Thursday-The scan showed no change and the chemo which finished last September is keeping everything stable.We are not back until December for the next scan results so we are over the moon.Need to book another holiday to celebrate!
Sue xx

User
Posted 07 Sep 2017 at 11:42

Oh fantastic news Sue.My Dad had around 2 1\2 years trouble free which we were amazed by.The statistics online he can be out of date for this rare small cell type and I guess everyone responds differently.I will keep everything crossed for you both.xx Paula

User
Posted 09 Sep 2017 at 15:06

What a difference a week makes!
Dads had a bad few days.Mum said he was behaving oddly weds then having nightmares.Fri the gp.was called to the home as a uti was suspected.The gp said it could be infection or hypercalcemia or cancer in the brain causing Dad to act as he is.I went to see him and was shocked by his decline.He is in a cotsided bed now and much of what he was saying had little to do with reality.
He has visibly lost weight though he is still eating with mums help.He drinks with a child-like beaker too as he has the shakes and was picking at the bed the whole time.
I did speak to him and kiss his forehead and he kissed me back.
The gp doesn't know his prognosis but told the family to.visit this weekend.Heartbreaking times however being positive for mum and Dad xxx

User
Posted 09 Sep 2017 at 15:43

Feeling for you Cookiegirl. It sounds as if dad is in a bad way.

All you can do is what you are already doing. Being there for him and your mum. Difficult days ahead for you and I'm thinking of you.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
User
Posted 09 Sep 2017 at 15:48

:-((
Paula , sending love and hope and strength to you all. I recently helped care for a man dying of prostate cancer and it was pretty damn horrible so I can only imagine what it is like for true family to see it. It does sound like this may be the last stretch I fear. Xx

User
Posted 09 Sep 2017 at 23:07

Dad can't swallow now.He is almost comatose.The gurgling from the secretions in his chest is difficult to hear.We have all visited him now and the nurses are being fantastic with him and us.
Goodnight for now and love to all on here Paula xx

User
Posted 10 Sep 2017 at 04:22

Hi Chris yes it is unpleasant however I consider it a privilege to sit with Dad.This is what he wanted to prevent for Mum to witness him like this...... obviously way beyond his control.All we can do is be there.xxx

User
Posted 10 Sep 2017 at 06:31

It is a privilege Paula , utterly ! Sitting and holding someone's hand talking softly is their only last feint grip on life but gives them so much reassurance judging by their grip. Thinking of you daily x

Edited by member 10 Sep 2017 at 06:35  | Reason: Not specified

User
Posted 10 Sep 2017 at 08:49
Paula

Your last couple of posts have brought back memories of my Mum's passing. I remember telling Mum it was time to let go. Thinking of you and take care of yourself.

Thanks Chris

User
Posted 11 Sep 2017 at 10:40

Dear Paula, I am glad you feel it is a privilege to be with your dad at this bittersweet time. I understand, and feel sure your dad will feel reassured too. Take care of you, too, xx

User
Posted 11 Sep 2017 at 12:43

My darling Dad just died.I am relieved his suffering is over and couldn't stay for the last few hours of unpleasantness.
I can't thank you all enough for your understanding over the years and sharing the good times which there have been many at least Mum was there with him when he died.
I have no experience of how I will feel this coming week xx Paula xx

User
Posted 11 Sep 2017 at 12:47
Hello Paula,

I'm sorry to hear your sad news, I hope and pray that you will find peace in the coming days.

Best wishes,

Arthur

User
Posted 11 Sep 2017 at 14:05

So sad for you and your family Paula but as you say, he is now out of pain.

How will you feel in the coming weeks and months?
That's a very individual feel but I am sure will swing through relief, guilt, pain, the whole gamut of emotions I expect.

What you need to remember is that however you feel, it is normal for you at that time.

It's hard to believe at the moment that life will revert to "normal" and that the pain will ease, but it will.

Just try and hang onto thoughts of the good times, the laughter and the joy you all shared. Your mum will need you now as there will be much to get through.

You are in my thoughts Paula X


Sandra

*****

Edited by member 11 Sep 2017 at 16:16  | Reason: Not specified

We can't control the winds - but we can adjust our sails
User
Posted 11 Sep 2017 at 14:47
So sad to read this Paula, my heart goes out to you and your family.

Thinking of you.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 11 Sep 2017 at 18:51

My sympathies for you and your family. I have followed your posts. Your lovely dad had a wonderful daughter. May he rest in peace.
Leila

 
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