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Arnie & the angels - Advanced prostate cancer

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User
Posted 02 Jun 2017 at 15:41
Hello, my name is Sharon, I'm 57 & my beautiful husband Arthur is 73. On New Years Eve 2016, he was diagnosed with Advanced Prostate Cancer with a PSA level of 951 it had already spread to his lymph nodes and bones with multiple mets. For fourteen months he was doing really well, with a monthly injection of Degarelix and an IV treatment of Bisphosphonates (pre zometa).

In February, everything started to go downhill, our visits to the Oncologist showed that his PSA was on the rise, doubling every month and he was getting more poorly as each day passed. He's stayed on Degarelix, they tried him with Bicalutamide which had no impact at all, then with Enzalutamide which again didn't help. Seven weeks ago, he was prescribed steroids to help improve his strength, mobility, appetite etc and Morphine for his extreme bone pain... it's been a roller coaster ride since then!!!

He was still getting around our bungalow with some help until a few weeks ago, he went to bed and when he woke in the night wanting the loo, as I helped him out of bed his legs wouldn't work or hold his weight. A call to my sister & brother in law, together with a creative transport method using a line of dining chairs meant we got him to the bathroom and back to bed.

The next day our Macmillan Nurse and District Nurse mobilised support with a camode/wheelchair, hospice in the home carers, Marie Curie nurses on some nights and regular visits from the district Nurse and our fabulous GP. He'd had a bad reaction to the morphine, showed signs of infection and his blood sugars were really high (also a diabetic). Changing to Longtec slow release and oral solution oxycodine, a course of antibiotics, putting him back on metformin for his blood sugars saw a return to some semblance on normality. We had a four/five day period of absolute hell whilst Arthur adjusted to the changes... he wanted to go to work, didn't recognise me and saw angels and sheep in the wallpaper!!!

Now he's reacting to the opiates again so time for more adjustments including Gabipentine and Amitriptyline. My heart breaks as he's so confused and scared at times, then other times he is resigned, peaceful and loving.

User
Posted 05 Jun 2017 at 17:54
Thank you everyone for your encouraging replies.

The hardest thing to cope with is the confusion and halucinations caused by the painkillers. Sometimes he doesn't even remember that he has Cancer and wants to know why he's in bed and wants to get up, go out, sit in the garden!! Every time I have to explain things it's like a knife in my heart.

Worse still the paranoia that We're keeping things from him and he doesn't know what's happening, even though we talk through all changes to his treatment. He told me last night that he used to love me but doesn't any more as I'm not telling him the truth! After 30 years of wonderful married live, great holidays, sharing a love of food plus caring for him now... that really hurts. He refused a hospital bed as it wasn't a double so we couldn't have a cuddle at night, now I'm no longer his best friend.

My big, beautiful man is reduced to skin & bones and has no strength in his legs, arms or body, unable to get out of bed and I at times I feel helpless despite all the wonderful support from the professionals and my family. His pride and integrity make it so difficult to be unable to do anything, it's such a huge contrast to the pre prostate cancer Arthur.

Does anyone have any advice or experiences of healping a confused loved one?

Many thanks,

Sharon

User
Posted 05 Jun 2017 at 21:27

Hi Shazarn, there is a Facebook group for ladies who's partners/husband/family members that have Prostrate Cancer https://www.facebook.com/groups/ProstateSistersAccord/ someone on there might be able to help.

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User
Posted 02 Jun 2017 at 23:23
Shaz

Very sorry to hear of your situation, New posts sometimes get lost so replying will bump you up the list, I am sure one of of loverly ladies will be along soon to offer​ some advice.

Thanks Chris

User
Posted 03 Jun 2017 at 16:42

Dear Sharon,

Just to say I feel for you really as I cannot offer any practical advice. You already have the 1st line defenses in place in respect of Macmillan, Marie Cure, District nurse and GP.

I can understand your pain and your heart break. Try to get as much out of the good days as you can. Relive those happy memories at the times when he is peaceful and loving. Those "Do you remember the time....." conversations which I hope will give you both a quiet contentment in the love you have and have shared.

My heart goes out to you. We have other ladies on here who have had husbands in a similar situation to yours and, like Chris, I hope they will come along to offer their support.

My best wishes to you both

Sandra

******

We can't control the winds - but we can adjust our sails
User
Posted 03 Jun 2017 at 19:46
Hi Sharon,

I am going to confess that I did read your post yesterday evening but just didn't have the words to reply , I still don't have the words but just wanted you to know that from one wife to another in a very similar situation I understand how difficult and heart breaking this disease can be.

I suppose all I can say is what I quite often say to people in a similar situation is ! Keep your chin up Chook.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 05 Jun 2017 at 17:54
Thank you everyone for your encouraging replies.

The hardest thing to cope with is the confusion and halucinations caused by the painkillers. Sometimes he doesn't even remember that he has Cancer and wants to know why he's in bed and wants to get up, go out, sit in the garden!! Every time I have to explain things it's like a knife in my heart.

Worse still the paranoia that We're keeping things from him and he doesn't know what's happening, even though we talk through all changes to his treatment. He told me last night that he used to love me but doesn't any more as I'm not telling him the truth! After 30 years of wonderful married live, great holidays, sharing a love of food plus caring for him now... that really hurts. He refused a hospital bed as it wasn't a double so we couldn't have a cuddle at night, now I'm no longer his best friend.

My big, beautiful man is reduced to skin & bones and has no strength in his legs, arms or body, unable to get out of bed and I at times I feel helpless despite all the wonderful support from the professionals and my family. His pride and integrity make it so difficult to be unable to do anything, it's such a huge contrast to the pre prostate cancer Arthur.

Does anyone have any advice or experiences of healping a confused loved one?

Many thanks,

Sharon

User
Posted 05 Jun 2017 at 19:49

Oh Shazarn I really hope some of our experienced ladies come to offer their advice.

Life must be very difficult for you st present, even with a lot of support.

Please hang in there I'm sure you'll get other replies

*****

We can't control the winds - but we can adjust our sails
User
Posted 05 Jun 2017 at 21:27

Hi Shazarn, there is a Facebook group for ladies who's partners/husband/family members that have Prostrate Cancer https://www.facebook.com/groups/ProstateSistersAccord/ someone on there might be able to help.

 
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