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Dads small cell cancer

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

 
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