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Husband age 54 stage 4

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User

Posted 08 Jun 2018 at 16:16

I see. As he was off for 8 months last year and has been on phased return since December I wouldn't know where he stands regarding sick pay.

We've had a chat today and we are going to arrange a meeting with hr to find out his options. He's not a member of the union now but he has been, I can call them if we're not happy with what's offered. Hopefully as they've been really good to him they'll continue to do this. We won't know until we ask!

User

Posted 14 Jun 2018 at 07:51

Hi Kentish,

You mentioned in one of your posts about life insurance and critical cover. If you had any i would cash it in any way. Not Necessarily because its the end of the line but it does give you finacial back up. I cashed in my life insurance six months ago but still working and intend to be around for a long time. The LI company was very good -London Royal- and went through the process smoothly. I assume because techicnally i have incurable prostrate cancer its covered under the conditions. I didnt buy a porche though!

Steven

User

Posted 28 Jun 2018 at 18:05

Hi Toast65,

It's all semantics when it comes to life insurance, critical illness is not necessarily terminal. We have terminal, the definition of which in our policies is "less than twelve months to live".

We'll have to wait and see if the insurance agree with the consultant but it's only a few weeks.

Regardless of whether the insurance pays out OH has been signed off again, the pain being too much to cope with.

We have had a meeting with the Pain management clinic and they have suggested OH stop codeine and try oral morphine and paracetamol instead.

Pain is reduced from not working anyway but still making it hard to keep mobile.

A good discussion and a holistic view of OH, looking at what could be causing pain and how to manage it.

Peripheral neuropathy, general wear and tear in the lower spine inflamed by the hormone therapy, and the pelvic metastases make it difficult to pin point.

OH has taken 3 doses over the last 24hr of 2.5ml of oramorph and 2 paracetamol. Already he feels that the pain isn't quite so bad. If that's all he needs then this is brilliant and we might even manage a walk to the pub to watch the footie!

User

Posted 28 Jun 2018 at 23:57

Quick update: oral morphine seems to be effective on the pain but OH feeling Meh! Not nauseous but not quite right. Had very loose bowels but this could possibly be coming off the codeine (which has made him feel that he never quite "goes" properly ).

A little bit worried as he turned down an invite from the neighbours to watch football in the pub.

User

Posted 30 Jun 2018 at 08:09

So the Oramorph is great. Yesterday OH took the morning dose and a metaclopromide to combat the nausea and this seemed to work. No paracetamol taken during the day and then a dose of oramorph in the evening. Oh says the bone and joint pain is still there but insignificant, yay.

On the downside his bowels seem to be all in a jumble, frequent trips to the loo and feeling a bit sick.

We saw the continence team yesterday to discuss bowel issues/constipation/urinary leakage and the nurse thought it was probably the morphine and hopefully this will wear off as he gets used to it.

Anyone else on oramorph got any suggestions?

User

Posted 30 Jun 2018 at 08:56

Hey Kentish just wondering if anyone has mentioned Zomorph 12 hour release capsules ,My onco prescibed these for me backed up with paracetamol and take oromorph when needed, It sort of worked for me but i still get dull aches sometimes,IMODIUM helps with loose bowels,Hope OH soon feels better all the best Geoff

User

Posted 30 Jun 2018 at 17:35

Thanks BanjoBert, the pain management nurse said if OH found he was taking oramorph every 4 hours then they would put him on zomorph instead, so while he's just on a morning and evening dose he'll stay on the liquid. I'll ask about immodium next week when we have a follow up call with the nurse. Hopefully OH will have adjusted to the morphine by then. He's really not feeling himself, very emotional and stressed :(

User

Posted 10 Aug 2018 at 18:24

10/08/18 Update

Another month on, sometimes it feels like the beginning of the end and other times life seems fairly normal.

After a period of adjustment, Nige has steadied at either 2 or 3 doses of oramorph a day depending on the level of activity, paracetamol in between; he's had to increase the movicol to 2 a day to keep things moving and has purchased a walking stick. The week he did this he could barely get in and out of the car because his hip is so painful but this week the hip is back to manageable and no stick required!

Due to pain in his ribs and his next onco appointment isn't until late September the GP asked for a PSA check for Nigel to see if Bicalutimide is working.

This was 3 weeks ago, I emailed the Secretary on Monday to see if they have the results but haven't had a response, frustrating but I'll chase again on Monday.

On another tune altogether ;)

Nigel has shown some amorous interest this week for the first time since last March, any advice on how to approach this in the most sensitive way possible in case the small amount of erection he has disappears quickly?

We've talked about our sex life before and he has said he sometimes thinks about it briefly but that there isn't any real desire so most of the time he just forgets about it.

He said he feels like he has let me down, I don't feel like that at all, I'm just so glad he is still here, so the last thing I want is for him to make a move and then not be able to sustain his own pleasure.

Anyone got any special moves!

User

Posted 10 Aug 2018 at 20:03

To be fair and blunt , after my surgery , oral sex to each other was all that was possible for a long while , but gave us both great pleasure erection or not ! He will probably be able to orgasm whilst flaccid and not many people know that. Then there is a pump , or injections , or urethral pellets etc. Just saying lol .....

I guess tbh you would have to really take the lead and he may get right into it. Good luck

User

Posted 10 Aug 2018 at 22:44

Thanks Chris, as he hadn't shown any interest in sex I didn't want him to think that I was expecting it...I've been following his lead in the bedroom which was to have a cuddle and pretty much instantly go to sleep (him, not me) so I was a bit surprised by his afternoon activity and not sure whether to encourage him.

If it continues I'll look at the other options....we had a healthy sex life right up until the month he was diagnosed, he was just too tired, so thank you for being blunt, this is not a time for coy conversation, I need to know what is out there for us :)

User

Posted 10 Aug 2018 at 23:17

I think in your situation the most supportive thing would be to have lube close by for unexpected moments. As long as you have lots of lube on your hand, you should be able to masturbate him to orgasm even if the erection starts to dwindle or disappears completely. Try to prevent him from looking or checking whether he is still hard - he doesn’t really need to know and if he isn’t panicking he is more likely to come.

There are cheaper lubes but you need one that stays slippery - I like the Durex ones easily purchased in supermarkets.

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

User

Posted 11 Aug 2018 at 08:05

A little dab of the hand in a cup of warm water brings the lube all back to life again ..... Just don’t forget and drink the water later lol.

If I was in the same boat as your hubby I would be happy for my wife to take the lead in whatever way and see what happens without any pressure on me at all.

User

Posted 11 Aug 2018 at 11:00

Kentish, I hope that he gets that fluttery interest again and it goes well. But keep at the back of your mind that it might mean the hormones are no longer working properly or that he has had a blip month and has risen over castrate level. When you get the PSA result, ask is the testosterone level also tested?

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

User

Posted 11 Aug 2018 at 13:09

Kentish

Google flaccid insertion , if you can master the technique it can be out of this world for both of you.

Thanks Chris

User

Posted 11 Aug 2018 at 14:06

Hi Lynn,

That's exactly what I have been thinking, bittersweet eh?

I mentioned before that I don't know if his testosterone has been measured, I will add this to my list of questions for the onco as I didn't get an answer from the specialist urology nurse.

I may email the onco with why I'd like to know.

We had successful all be it swift sex last night. I'm fairly sure that the fellas on here will comment as to whether that level of erection is possible if you are castrate, I'm thinking not?

Hubby is feeling very pleased with himself and I don't want to burst his bubble :(

User

Posted 11 Aug 2018 at 14:48

Being at or below castrate doesn't prevent an erection from happening but it usually prevents the man from feeling any enjoyment in it. However, this revived interest isn't automatically bad news. There are or have been members here who never lost their libido at all despite being below castrate level - Alathays being the most notable but not the only one.

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

User

Posted 16 Aug 2018 at 13:16

Update 17/08/18

Blood test results back, PSA has risen to 14.7. Don't known the rest of the results as this is all the Secretary could give me. Secretary is going to pass on the results to onco today and ask what, if anything he wants OH to do.

Aviva life insurance have accepted our claim for terminal illness, bittersweet in that the mortgage gets paid, OH doesn't need to worry about the bills as I work full time but it means they agree with the consultant that this is looking a bit grim.

OH is understandably upset but it didn't take him long to suggest that we look at a VW Transporter camper van for pootling off to places for the weekend!

We are off on holiday tomorrow with lots of family. Enjoying the little things as much as the big.

User

Posted 16 Aug 2018 at 13:58

Buy that motor-home and bugger off on your travels!

Aviva don’t consider a prostate cancer diagnosis of Gleason 3+3=6 as ‘life threatening’ and will not pay out on their Clitoral Illness policies. Of course, they never mention that when you sign up!

One bloke here thinks it’s to do with Jackie Gleason, whoever he is. I think he does know about the medical scale really, but he likes a laugh in the face of adversity, like me.

Unlike some correspondents here.

Enjoy your hols.

Cheers, John

User

Posted 16 Aug 2018 at 14:41

Haha Clitoral Illness Bollinge.

Kentish I wish you both endless fun and being as happy as you can in the times ahead. I’m no Onco but I would be spending each day doing whatever made me happy and gave me pleasure. Very sad for you both and dread the future myself tbh but keep putting it to the back of my mind. Xx

User

Posted 16 Aug 2018 at 15:11

Bollinge, your irreverence around illness and death tickles my sense of humour, though I can understand occasions whereby it may be upsetting.

My husband and I do make jokes around the situation but this tends to be in private as not everybody gets it! There has been some awkward silences following an off the cuff remark from us, we have learnt to gauge our audience ;)

I can't think of anything more boring than car shopping but I know that it will keep OH and our son busy for weeks.

In OH's words regarding the payout..."every cloud..."

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