I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error
12>

Husband age 54 stage 4

User
Posted 19 Mar 2017 at 23:33
I'm just looking for support really. It's early days, at the moment we're waiting for the first oncology appointment. My husband was diagnosed with advanced pc last Thursday. His Psa is 104,gleason is 10,he has metastases in both his pelvic bone and left femur. It's feeling pretty grim.

He has been signed off work for two weeks, he is very fatigued. Urology has passed us to oncology as he is inoperable.

Has anyone got anything positive to share. I am feeling very sad. We have 2 children 13,15 and are waiting for a treatment plan before we talk to them. I haven't posted to forums before, please excuse any mistakes.

User
Posted 20 Mar 2017 at 07:03

Oh yes Wife, I can offer you hope.

I've got advanced prostate cancer just like your hubby. I'm a Gleason 9, just 1 less than hubby, so not much different. It's nearly 4 years since I was diagnosed and I'm still here!. There's loads the medics can do to keep me and hubby going for a good while yet.

User
Posted 20 Mar 2017 at 07:36


Hi wife ,my OH was diagnosed about 15 months ago with Gleason 9, his also was inoperable.at the time our world just felt like it was going to end and there was no hope .But after starting on hormones and then 6 sessions of chemo his PSA is undetectable.
During chemo Gary was still able to work just at a slower pace but only taking 1 day off due to fatigue ,he is still working full time in a manual job and enjoying life and our soon to be 3rd grandchild .
Please don't despair (easier said than done ) once treatment plan is in place and PSA levels drop it gets easier to cope with .
Gary is now on the stampede trial and is closely monitored with 4 weekly blood tests and 8 weekly onco apps .
Life is good even though a bit different to before .
Best wishes to you and your family
Debby

User
Posted 16 Aug 2018 at 15:42

Originally Posted by: Online Community Member

Chris, I reread "clitoral" several times to make sure that's what it said...

Some of my friends are in what I call the “death insurance” business = ‘Financial Advisor‘ and ‘clitoral’ is what they call ‘critical’ insurance by way of a joke.

We are all ex-pubic schoolboys in our sixties who have never grown up.

Fortunately!

Edited by member 16 Aug 2018 at 16:01  | Reason: Not specified

User
Posted 19 Mar 2017 at 23:33
I'm just looking for support really. It's early days, at the moment we're waiting for the first oncology appointment. My husband was diagnosed with advanced pc last Thursday. His Psa is 104,gleason is 10,he has metastases in both his pelvic bone and left femur. It's feeling pretty grim.

He has been signed off work for two weeks, he is very fatigued. Urology has passed us to oncology as he is inoperable.

Has anyone got anything positive to share. I am feeling very sad. We have 2 children 13,15 and are waiting for a treatment plan before we talk to them. I haven't posted to forums before, please excuse any mistakes.

User
Posted 20 Mar 2017 at 06:46
Hi the wife

Sorry to hear you have had to join this forum but you will find so much help, advice and support from everyone on this site, I am the daughter of someone with this disease although my dad is at a different staging so unfortunately I don't feel I can offer any real knowledge and advice but I'm hear to offer emotional support, I'm bumping you up and no doubt other more knowledgeable members will be along soon to chat with you,

take care

Viv x

The only time you should look back is to see how far you have come
User
Posted 20 Mar 2017 at 07:06

Hi Wife
The most terrible news for you I know and I'm really sorry. My cancer is T4 but locally advanced so not as bad as your hubbies yet. People in the same boat will be along to help you, who have survived many more years because of the effectiveness of modern treatments. My youngest is 6 so I know how you feel , but children are very resilient.
Once you have the plan you may feel more assured. Best wishes
Chris

If life gives you lemons , then make lemonade

User
Posted 20 Mar 2017 at 07:52

Wife,

What is hubby's job? Does he work in the public sector or private sector? Might he be a member of a final salary pension scheme? I only ask because there may be some financial opportunities available regarding pensions.

User
Posted 20 Mar 2017 at 08:55

Hi Wife,

A hello form me as well. Initial dx is always the worst but once the onco team get a plan together it focus's you and your OH as a team as well. I was dx just about 2 years ago with PSA 294, Gleason 9 Mets in bones, pelvis, vertebrae and shoulders. The start is very scarey and when on HT and early chemo, six rounds. Have 2 girls younger than yours and felt there was no need to mention it to them. Your will be different.
The dx meant that OH and me talked a lot about it, discussed options and treatment and progress and then after a while we didn't have to speak about Pca at all. We got through chemo well, kept working and kept up exercise and reasonable diet. Was just sensible really. PSA went down but on rise again but have so many other treatments. Far as we are concerned going to be around for a long time. I had to get out of the mindset is it 5,10,15 years. Our life has continued and will do.
You will find lots of positive advise here on the Pca Journey.
steven

User
Posted 20 Mar 2017 at 12:50

What an amazing amount of support. Our story is different but all the best to you from another wife.
Julie

User
Posted 20 Mar 2017 at 14:30

OK, what I was thinking isn't of any use to you. With final salary pension schemes there is usually a provision for requesting ill health retirement. The nice thing about most of these schemes is that they credit you with all the years you would have worked if you'd retired at normal retirement age.

I've learnt a lot about pensions over the last 30 years or so. I'm not an IFA but if you want someone to bounce ideas off then I'd be happy to advise although I would then urge you to take independent financial advice before making any final decisions.

User
Posted 20 Mar 2017 at 22:36
Hi The Wife,

So from one wife to another with hubbys with a pretty grim diagnosis although for you still early days and boy I remember them well and just how scary they can be.

A little about our story and you can click on peoples avatars (photos ) and you can read there journeys we call it a bio but you will get your head around all of the different and very new lingo.

So anyway Trevor was diagnosed ( 4 years this May) with a PSA of 13000 ext mets just about everywhere from his shoulders to his pelvis we have been on just about every treatment and yes we have had some very wobbly moments but the point of my story is to say he is still here / still going and most importantly still doing the school run for our boys 13 and 17 .

Please take heart I know you re still in that awful bubble of those terrifying early days but trust me on this there is lots of life after diagnosis.

Please keep posting I can honestly say that this forum has been a life line of support and information for me in the last 4 years.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 21 Mar 2017 at 18:23
Hi Kentish so sorry you find yourself here but on the other hand it is absolutely the best place for love care and sound advice from many people with lots of experience and positive stories. I don't post very much, I am no so good at it and end up posting in wrong places etc, but I read the posts every day for support and guidance. My husband was diagnosed I'm May 2015 he is stage 3 Gleason 10 and on HT and early chemo (6 cycles) he had his fourth infusion on Thursday. He is doing ok. It is very scary and we have been through a lot of emotional ups and downs. Funny enough one of the most difficult things, once we got our head around the diagnosis was the emotional dynamics between us. Graham has always been the one to care for me and has so much more patience. I am much more matter of fact, get on with it kind of person. So, he is hopeless at being in need of care sometimes and am out of my comfort zone being the carer. The point is though that we are both learning and adapting to the situation taking things a day at a time and gradually learning to be tolerant and kind to each other because essentially we are still the same people. I am amazed at how resilient we all are. You and your OH will get lots of support here and as lots of people have said there are so many treatments available to people these days that there is much positivity, when you can read through some of the posts. I know you are scared but there is great hope for the future.

Take care and very best wishes.

User
Posted 22 Mar 2017 at 22:40

Makes me grateful for the fact that my OH is no more likely to decide to redecorate than he is to train to be a classical ballet dancer. The diagnosis has reinforced our mutual tendencies to do absolutely nothing around the house of a practical nature. On the other hand we are absolutely committed to putting the world to rights in the local, sitting in the sunshine, standing around aimlessly and bickering about nothing at all. Quite soothing really!

I agree with Mountain Stream - very sorry that you are having to deal with this tough diagnosis but I'm sure you'll find lots of good advice, kindness and comfort on this site. Like so many people I find it an absolute lifeline. So good to be able to say anything at all and be completely understood by people who are on the same journey.

Take care.

Hugs

Eleanor

x

User
Posted 12 Mar 2018 at 07:17

Hi Kentish, PCUK ran a programme a couple of years ago on fatigue and a few members were involved. It did seem to help so probably worth you giving the nurses a call on the number at the top of the website page.

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

User
Posted 15 Mar 2018 at 20:03
Hi Kentish

My hubby did the fatigue work with the PCUK teams and it did help him a lot at the time, it’s all about pacing and recording when you are tired and need a nap. I’ve found my hubby needs a nap most days and has done since diagnosis, the fatigue affects some much more then others, it’s a horrible side affect that many people can’t begin to understand. Definitely give the nurses a ring and see if they will put him on the programme, you never know, it might help.

Good luck

Devonmaid

User
Posted 15 Mar 2018 at 20:41
Kentish

I'm a bit younger than your OH. I've been on hormone therapy for three weeks and I'm exhausted. At first, I thought it was all in my head. But it must be the medication because I am wiped out. I find this odd as I thought I'd breeze through the HT. I'm phoning the PCUK nurses for a bit of guidance.

Ulsterman

User
Posted 14 May 2018 at 21:00

Really sorry to see that - did they do a testosterone test?

Possibly they will keep him on bicalutimide and Zoladex until the PSA starts to rise again and then introduce either abiraterone or enzalutimide - and / or possibly another go at chemo.

Is he still on full sick pay or has he been dropped to half pay or SSP now? If your income is dropping, it might be the right time to see a Macmillan adviser and start looking into ill-health retirement.

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

User
Posted 14 May 2018 at 23:21

Perhaps just tell him that the hormone treatment is to stop testosterone and it would be really useful to know that it is working. If he is agreeable you could then call the urology nurse (or ask at the GP practice) whether testosterone levels have been measured when the PSA test is done?

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

User
Posted 16 May 2018 at 21:44
Originally Posted by: Online Community Member
I can't explain how "not knowing" is in itself exhausting, for OH and me..

I think every one of us here can sympathise completely with that viewpoint, Kentish. Not knowing is, in many ways, worse than knowing even bad news, because your life is just completely on hold while you wait. I hope the bone scan results are favourable.

Chris

User
Posted 20 May 2018 at 18:54
I would recommend trying acupuncture. It’s helps me loads with the fatigue and hot flushes. Our local Neil Cliffe Centre offered it as did The Christie where I’m being looked after
User
Posted 20 May 2018 at 18:56
I describe it as my old life ending the day I was diagnosed, 9th May 2017 and a new life starting. I don’t like the new life but it’s better than the alternative!
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 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

If life gives you lemons , then make lemonade

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.

If life gives you lemons , then make lemonade

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 13:58
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

If life gives you lemons , then make lemonade

User
Posted 16 Aug 2018 at 15:30

I suppose I am lucky enough to have cancer where there is nothing wrong with me - except I have cancer - and I have looked at the statistical predictions of demise and they are very slim as a result of my disease.

I am 62 years old and am of the opinion that there has to be something written on your death certificate. Hence my flippant attitude to it all. Others in more unfortunate situations to me might not appreciate such levity.

All I say is keep breathing, in-out, in-out.

Cheers, John

Edited by member 16 Aug 2018 at 15:34  | Reason: Not specified

User
Posted 16 Aug 2018 at 15:32
I’ve been doing LOADS of fancy cooking and really enjoy planning a nice meal. Sounds like hubs should apply for Masterchef !! Quality tucker. Replace the beans with mushy peas though lol

If life gives you lemons , then make lemonade

User
Posted 08 Sep 2018 at 14:59
Kentish, I had nearly three years on ago before it began to fail. No symptoms at all. Some men don't get the benefit for so long as I did, but there may be a few for whom longer treatment works. I hope your oh is one such.

AC

Show Most Thanked Posts
User
Posted 20 Mar 2017 at 06:46
Hi the wife

Sorry to hear you have had to join this forum but you will find so much help, advice and support from everyone on this site, I am the daughter of someone with this disease although my dad is at a different staging so unfortunately I don't feel I can offer any real knowledge and advice but I'm hear to offer emotional support, I'm bumping you up and no doubt other more knowledgeable members will be along soon to chat with you,

take care

Viv x

The only time you should look back is to see how far you have come
User
Posted 20 Mar 2017 at 07:03

Oh yes Wife, I can offer you hope.

I've got advanced prostate cancer just like your hubby. I'm a Gleason 9, just 1 less than hubby, so not much different. It's nearly 4 years since I was diagnosed and I'm still here!. There's loads the medics can do to keep me and hubby going for a good while yet.

User
Posted 20 Mar 2017 at 07:06

Hi Wife
The most terrible news for you I know and I'm really sorry. My cancer is T4 but locally advanced so not as bad as your hubbies yet. People in the same boat will be along to help you, who have survived many more years because of the effectiveness of modern treatments. My youngest is 6 so I know how you feel , but children are very resilient.
Once you have the plan you may feel more assured. Best wishes
Chris

If life gives you lemons , then make lemonade

User
Posted 20 Mar 2017 at 07:36


Hi wife ,my OH was diagnosed about 15 months ago with Gleason 9, his also was inoperable.at the time our world just felt like it was going to end and there was no hope .But after starting on hormones and then 6 sessions of chemo his PSA is undetectable.
During chemo Gary was still able to work just at a slower pace but only taking 1 day off due to fatigue ,he is still working full time in a manual job and enjoying life and our soon to be 3rd grandchild .
Please don't despair (easier said than done ) once treatment plan is in place and PSA levels drop it gets easier to cope with .
Gary is now on the stampede trial and is closely monitored with 4 weekly blood tests and 8 weekly onco apps .
Life is good even though a bit different to before .
Best wishes to you and your family
Debby

User
Posted 20 Mar 2017 at 07:52

Wife,

What is hubby's job? Does he work in the public sector or private sector? Might he be a member of a final salary pension scheme? I only ask because there may be some financial opportunities available regarding pensions.

User
Posted 20 Mar 2017 at 08:55

Hi Wife,

A hello form me as well. Initial dx is always the worst but once the onco team get a plan together it focus's you and your OH as a team as well. I was dx just about 2 years ago with PSA 294, Gleason 9 Mets in bones, pelvis, vertebrae and shoulders. The start is very scarey and when on HT and early chemo, six rounds. Have 2 girls younger than yours and felt there was no need to mention it to them. Your will be different.
The dx meant that OH and me talked a lot about it, discussed options and treatment and progress and then after a while we didn't have to speak about Pca at all. We got through chemo well, kept working and kept up exercise and reasonable diet. Was just sensible really. PSA went down but on rise again but have so many other treatments. Far as we are concerned going to be around for a long time. I had to get out of the mindset is it 5,10,15 years. Our life has continued and will do.
You will find lots of positive advise here on the Pca Journey.
steven

User
Posted 20 Mar 2017 at 12:50

What an amazing amount of support. Our story is different but all the best to you from another wife.
Julie

User
Posted 20 Mar 2017 at 13:27
ColU_Fc working for Brakes food distribution only had a pension with them for around 5 years. He has several small pension pots from previous employers. We need to see what we can do with them.

Edited by member 20 Mar 2017 at 13:29  | Reason: Not specified

User
Posted 20 Mar 2017 at 14:30

OK, what I was thinking isn't of any use to you. With final salary pension schemes there is usually a provision for requesting ill health retirement. The nice thing about most of these schemes is that they credit you with all the years you would have worked if you'd retired at normal retirement age.

I've learnt a lot about pensions over the last 30 years or so. I'm not an IFA but if you want someone to bounce ideas off then I'd be happy to advise although I would then urge you to take independent financial advice before making any final decisions.

User
Posted 20 Mar 2017 at 18:58
Thank you everyone, that's exactly what I needed. Next appointment date is 2/4/17,that seems like forever! We have had a letter today in which the urologist recommends to the oncologist OH for the STAMPEDE trial. I have had a quick read about the trial and gather this is adding chemo to HT. OH was signed off last week for 2 weeks, he's permanent nightshift and it's too tiring. He's still suffering from the biopsy 21/2/17 feeling very tender inside. He's normally so full of energy it's been quite a shock to both of us just how exhausted he is. As he isn't very technically minded I shall pass on your support and may post on his behalf in the future. Thank you all again. Xx
User
Posted 20 Mar 2017 at 22:36
Hi The Wife,

So from one wife to another with hubbys with a pretty grim diagnosis although for you still early days and boy I remember them well and just how scary they can be.

A little about our story and you can click on peoples avatars (photos ) and you can read there journeys we call it a bio but you will get your head around all of the different and very new lingo.

So anyway Trevor was diagnosed ( 4 years this May) with a PSA of 13000 ext mets just about everywhere from his shoulders to his pelvis we have been on just about every treatment and yes we have had some very wobbly moments but the point of my story is to say he is still here / still going and most importantly still doing the school run for our boys 13 and 17 .

Please take heart I know you re still in that awful bubble of those terrifying early days but trust me on this there is lots of life after diagnosis.

Please keep posting I can honestly say that this forum has been a life line of support and information for me in the last 4 years.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Mar 2017 at 23:09

This is going to get very confusing with one member called The Wife and another called Thewife posting messages to each other!

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

User
Posted 21 Mar 2017 at 07:59
I'll change it. :)
User
Posted 21 Mar 2017 at 08:12
Changed from The Wife to Kentish.
User
Posted 21 Mar 2017 at 11:05

Ha - hello Kentish x

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

User
Posted 21 Mar 2017 at 18:23
Hi Kentish so sorry you find yourself here but on the other hand it is absolutely the best place for love care and sound advice from many people with lots of experience and positive stories. I don't post very much, I am no so good at it and end up posting in wrong places etc, but I read the posts every day for support and guidance. My husband was diagnosed I'm May 2015 he is stage 3 Gleason 10 and on HT and early chemo (6 cycles) he had his fourth infusion on Thursday. He is doing ok. It is very scary and we have been through a lot of emotional ups and downs. Funny enough one of the most difficult things, once we got our head around the diagnosis was the emotional dynamics between us. Graham has always been the one to care for me and has so much more patience. I am much more matter of fact, get on with it kind of person. So, he is hopeless at being in need of care sometimes and am out of my comfort zone being the carer. The point is though that we are both learning and adapting to the situation taking things a day at a time and gradually learning to be tolerant and kind to each other because essentially we are still the same people. I am amazed at how resilient we all are. You and your OH will get lots of support here and as lots of people have said there are so many treatments available to people these days that there is much positivity, when you can read through some of the posts. I know you are scared but there is great hope for the future.

Take care and very best wishes.

User
Posted 21 Mar 2017 at 18:23
Hi Kentish so sorry you find yourself here but on the other hand it is absolutely the best place for love care and sound advice from many people with lots of experience and positive stories. I don't post very much, I am no so good at it and end up posting in wrong places etc, but I read the posts every day for support and guidance. My husband was diagnosed I'm May 2015 he is stage 3 Gleason 10 and on HT and early chemo (6 cycles) he had his fourth infusion on Thursday. He is doing ok. It is very scary and we have been through a lot of emotional ups and downs. Funny enough one of the most difficult things, once we got our head around the diagnosis was the emotional dynamics between us. Graham has always been the one to care for me and has so much more patience. I am much more matter of fact, get on with it kind of person. So, he is hopeless at being in need of care sometimes and am out of my comfort zone being the carer. The point is though that we are both learning and adapting to the situation taking things a day at a time and gradually learning to be tolerant and kind to each other because essentially we are still the same people. I am amazed at how resilient we all are. You and your OH will get lots of support here and as lots of people have said there are so many treatments available to people these days that there is much positivity, when you can read through some of the posts. I know you are scared but there is great hope for the future.

Take care and very best wishes.

User
Posted 22 Mar 2017 at 21:06

Thank you Mountain Stream. Likewise, my husband doesn't "do" poorly, usually just moans a bit and then goes to work anyway! I don't think he's taken a sick day for years. He's not a very patient person so we've had a few angry words regarding the fortnight wait for the next appointment. In the meantime he has decided to redecorate our daughters bedroom and the stairs, cue lots of mess and plaster falling off the walls. We've had a pep talk with one another around trying not to let "waiting" consume us, that in itself is exhausting. So gritty carpets it is and eau de gloss.

User
Posted 22 Mar 2017 at 22:40

Makes me grateful for the fact that my OH is no more likely to decide to redecorate than he is to train to be a classical ballet dancer. The diagnosis has reinforced our mutual tendencies to do absolutely nothing around the house of a practical nature. On the other hand we are absolutely committed to putting the world to rights in the local, sitting in the sunshine, standing around aimlessly and bickering about nothing at all. Quite soothing really!

I agree with Mountain Stream - very sorry that you are having to deal with this tough diagnosis but I'm sure you'll find lots of good advice, kindness and comfort on this site. Like so many people I find it an absolute lifeline. So good to be able to say anything at all and be completely understood by people who are on the same journey.

Take care.

Hugs

Eleanor

x

User
Posted 12 Mar 2018 at 00:40
It's been a long year. I didn't feel like cataloging the journey, like many others here; we have been trying to get on with life regardless of pca.

Oh ended up being off work for 8 months, his fatigue was and still is dreadful. He had 6 cycles of docetaxel july-Oct and started a phased return to work in January. He still hasn't managed a full week and is on light duties. Latest oncology review 19/2/18 gave psa as 0.8 which is good. All other bloods were within "normal ranges" but iron was a bit low at 125.

We've upped the dark chocolate and red wine to combat this😃

Next appointment is in May. Oh is struggling to get through a day without napping, anyone have any advice on being able to improve this?

User
Posted 12 Mar 2018 at 07:17

Hi Kentish, PCUK ran a programme a couple of years ago on fatigue and a few members were involved. It did seem to help so probably worth you giving the nurses a call on the number at the top of the website page.

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

User
Posted 15 Mar 2018 at 20:03
Hi Kentish

My hubby did the fatigue work with the PCUK teams and it did help him a lot at the time, it’s all about pacing and recording when you are tired and need a nap. I’ve found my hubby needs a nap most days and has done since diagnosis, the fatigue affects some much more then others, it’s a horrible side affect that many people can’t begin to understand. Definitely give the nurses a ring and see if they will put him on the programme, you never know, it might help.

Good luck

Devonmaid

User
Posted 15 Mar 2018 at 20:41
Kentish

I'm a bit younger than your OH. I've been on hormone therapy for three weeks and I'm exhausted. At first, I thought it was all in my head. But it must be the medication because I am wiped out. I find this odd as I thought I'd breeze through the HT. I'm phoning the PCUK nurses for a bit of guidance.

Ulsterman

User
Posted 14 May 2018 at 20:41
Update: Reviewed May 11th, PSA 3.

Not really what OH wanted, when you know that there are only 2 outcomes for each appointment 1) Same 2) worse, you really hope for option 1.

OH very fatigued, has managed a fortnight at work full time but is suffering from the effort, increased pain and a brain fog that's hard to shift.

He naps when he gets in so he can spend the evening with us.

Waiting for an appointment for a bone scan, Oncology thinks it's worth a look to see if there are any new mets.

Prescribed Bicalutimide to add to the 3 monthly Zoladex to see if that reduces psa.

We were really hoping that Zoladex would have lasted longer before seeing a rise.

What can I expect for OH with the added Bicalutimide?

What have others done next?

Thank you in advance.xx

User
Posted 14 May 2018 at 21:00

Really sorry to see that - did they do a testosterone test?

Possibly they will keep him on bicalutimide and Zoladex until the PSA starts to rise again and then introduce either abiraterone or enzalutimide - and / or possibly another go at chemo.

Is he still on full sick pay or has he been dropped to half pay or SSP now? If your income is dropping, it might be the right time to see a Macmillan adviser and start looking into ill-health retirement.

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

User
Posted 14 May 2018 at 22:24
Thanks for the reply Lynn. I don't know about testosterone, I haven't asked. My OH doesn't read the literature and finds it hard to understand if he tries, he's very dyslexic. I have found that if I mention anything to do with treatments he gets fixated on it and angry with me if he doesn't really understand. I would ask endless questions if it were just me in the room with the onco but I feel bad asking in front of OH as more information seems to overwhelm him. What do I need to find out about testosterone?

Sick pay stopped back in October but his employers have been very good to him and continued to pay full pay. I can't fault how lovely they have been to him. It does mean we don't qualify for means tested benefits though. I have been in touch with my local benefits lady at macmilan, not much they can do at the moment.

Edited by member 14 May 2018 at 22:29  | Reason: Not specified

User
Posted 14 May 2018 at 23:21

Perhaps just tell him that the hormone treatment is to stop testosterone and it would be really useful to know that it is working. If he is agreeable you could then call the urology nurse (or ask at the GP practice) whether testosterone levels have been measured when the PSA test is done?

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

User
Posted 16 May 2018 at 19:42

Update, Appointment for bone scan in today's post. 25/05. At the review on Friday Onco said it was about time to do another bone scan, last one was done at diagnosis Feb 17, to have a look but that it was not urgent. This feels a little urgent! We were expecting from that conversation the date to be next month or nearer the next review in 3 months time. As a result of the letter I contacted the specialist team to ask about whether the results of the scan will be sent to us or if we had to wait until the next appointment to go through them. OH was very distressed at how quickly the appointment has arrived and that he wouldn't know whether there was any change or not for 3 months. I relayed this to the nurse and they have booked in OH the Friday following the scan to go through the results. A question they asked me was "how will you feel if it is not a good result but there isn't anything we can do about it?"
I can't explain how "not knowing" is in itself exhausting, for OH and me.
I've posted not to complain, but just to air my frustration, and anger at a cancer that is nibbling away at OH. If I put it here then I won't take it out on people who don't deserve it, family, nurse etc.
Thank you for listening, grrr

Ps. Lynn, testosterone had not been measured in any test so far. Nurse didn't seem to think it was important or necessary to do, and that it won't change the general outcome of Nigels treatment plan.

Edited by member 16 May 2018 at 19:45  | Reason: Not specified

User
Posted 16 May 2018 at 21:44
Originally Posted by: Online Community Member
I can't explain how "not knowing" is in itself exhausting, for OH and me..

I think every one of us here can sympathise completely with that viewpoint, Kentish. Not knowing is, in many ways, worse than knowing even bad news, because your life is just completely on hold while you wait. I hope the bone scan results are favourable.

Chris

User
Posted 20 May 2018 at 18:54
I would recommend trying acupuncture. It’s helps me loads with the fatigue and hot flushes. Our local Neil Cliffe Centre offered it as did The Christie where I’m being looked after
User
Posted 20 May 2018 at 18:56
I describe it as my old life ending the day I was diagnosed, 9th May 2017 and a new life starting. I don’t like the new life but it’s better than the alternative!
User
Posted 20 May 2018 at 19:38

"Ps. Lynn, testosterone had not been measured in any test so far. Nurse didn't seem to think it was important or necessary to do, and that it won't change the general outcome of Nigels treatment plan"

If it were me, I would want to ask the onco about that at the next opportunity. Personally, I disagree with the nurse for the following reasons:

- if the PSA rises and the testosterone is not at castrate level or below that tells you that the hormone isn't working as well as it should.
- if the PSA rises and the T is below castrate level, that tells you that the cancer has learned to survive without testosterone (this is commonly called being 'hormone resistant' 'castrate resistant' or 'androgen independent'

If a) applies, they add bicalutimide and / or change the hormone or give it more frequently. If b) applies, it is necessary to introduce a new treatment or look for trials.

Was it the oncology / urology nurse specialist or the one at your GP surgery?

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

User
Posted 07 Jun 2018 at 23:46
Thanks Lynn,

It was the urology nurse. Results of the bone scan "no significant changes and no new mets" I said "Good, well that's good isn't it?" And the onco just looked at me, no nod of agreement or anything. He's a very nice chap but I find it really hard to read his expression, I'm sure he's very good at poker!

We discussed Oh fatigue and general well being and onco suggested considering early retirement if it's possible, as work is more effort than necessary.

We also discussed life insurance and terminal illness cover, I hadn't really prepared to have this conversation just yet but who does?

Onco thinks OH will qualify for terminal.

A depressing meeting all round really, OH needs a few days to mull over what he wants to do but all the decisions are tough ones.

Onco did say that it's likely that OH will have another change in his treatment plan within the year, I've looked him up and his specialism is pca so I'm going to assume he will be offering OH the best he can get within our NHS Trust.

Regarding trials, this was discussed early on and onco felt there wasn't a suitable trial for OH at the moment but I will ask in the next review.

User
Posted 07 Jun 2018 at 23:58
I am so sorry Kentish, this was not what you hoped for. On the other hand, if you can get an enhancement then perhaps ill health retirement would be a blessing - we made the decision 2 months ago that John should pack in work and honestly, he is like a different man. It is as if a weight has been lifted.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jun 2018 at 00:06
I think it would be Lynn. It definitely feels like he's slogoing away because he thinks he should.

If we don't get the enhancement then he will be signed off sick again with a view to not returning. He'll need to talk to his hr dept to get an idea of what Ill health retirement entails.

Like I said, all the decisions are really tough, sometimes I don't know where to start.

User
Posted 08 Jun 2018 at 01:41
If not already done so, consider speaking to Macmillan nurses or your local hospice - both usually have some kind of befriender / adviser who can help you make sense of financial matters. Also, Macmillan do a leaflet about cancer & money.

Does he have any employer pension pots? One of the things I didn't realise was that the pension companies can make better offers when they realise that they will not be paying the pension for 30 years.

John didn't get any kind of enhancement or even early retirement; I estimated that he would be off work on full pay for 4 months and they just agreed to give him the 4 months salary as a lump sum.

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

User
Posted 08 Jun 2018 at 07:02
Hi Lynn,

I have spoken to Macmilan adviser, they suggested OH be signed off again and that he start the early retirement conversation with his HR dept. Being honest, I think he is afraid to do this, he's only been there 10 years so the pension is negligible, we would be walking away with very little.

What do you mean by the 4 months?

Thank you for taking the time to chat.

User
Posted 08 Jun 2018 at 09:18
If you have a union representative they would be good to talk to too. Just be careful the company doesn't encourage you to take the "cheap" (for them) option.

If in doubt stay on the sick rather than resigning / retiring.

User
Posted 08 Jun 2018 at 09:25
Varies from company to company but at John's place they pay sickness at 6 months full pay, 3 months half pay then it drops to just statutory sick pay. He had already been off for two months so had 4 months left - he just spoke to the head of HE and said 'if I go now rather than you having to pay me for months, would there be any deal?' They said 'no retirement or redundancy deal but we will give you the 4 months full pay up front if you want to go now'

For us it was a no brainer but a) he trusted the HR director implicitly b) he is not terminally ill and c) we knew it would be better for the company (and John's staff) to be able to draw a line and recruit someone in his place.

You need proper advice - is he in a union?

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

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

If life gives you lemons , then make lemonade

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 :)

 
Forum Jump  
12>
©2019 Prostate Cancer UK