On going

User

Posted 21 Nov 2020 at 14:45

Thank you for you’re lovely responses. This horrible disease has blighted too many lives. The physical & physiological impact touches each man, their family and partner. David has been through the mill both physically and emotionally, three years of HT was hard going, to have the man I love next to me in bed without a speck of sexual interest was hard on many levels. His pain and angst, combined with my feelings of rejection, intellectually I could deal with it, but emotionally it was hard. He had pains, mood changes, hot flushes and skin irritation. The GP was not particularly helpful, having what seemed like a cursory understanding of the side effects. This led to my reading, learning and trying to understand this bloody disease and it’s impact on our lives. The skin irritation was awful, he was prescribed lotions and potions, and eventually we found an a cream that helped. The GP was all for prescribing Pregabalin but David declined. He finished the HT and slowly his interest in sex returned, his skin improved, his moods swings and hot flushes abated. This took about 18 months, we rekindled our physical lives, it was different, we used what resources we could to get an erection, laughing, crying yet continuing to explore our new sexual experiences. He couldn’t use viagra it gave him a headache, I laughingly said I thought that was my line. We can now achieve penetration sometimes, and we can enjoy each other once again. David has always had skin irritations the HT seemed to make it so much worse. Today we are older wiser, with a decent physical relationship, and a PSA of 0.1 this week. We’ve had comments about this being one of the better cancers, oh you’ll

be fine and other crass comments. We’ve also learned a lot about each other, this disease and it’s impact.

This site had helped a great deal, the support, care, concern and humour has kept us going, sometimes when the world seemed a bleak place. David was Gleason 9 tb3 so he had the full works of treatment options. For each man and partner the situation is different, and personal. I hope this gives some insight not just the factual medical, but the reality of some of the feelings, emotional pain, the ups & downs of this all to common disease.

Lets hope the treatments and understanding improves. This year has been hard for all humanity, but especially hard for this with complex health needs. Take care all, and value the insight this community gives each one of us. It has been invaluable. Leila x

Edited by member 21 Nov 2020 at 14:50 | Reason: Not specified

User

Posted 21 Nov 2020 at 20:04

Just a lovely post Leila x

User

Posted 23 Feb 2021 at 15:38

It's that time again, David's just had his PSA results. This time it was 0.3 He hates it when it wobbles up a bit. It's five years sine he had his treatments and his last HT injection was March 2018.

His PSA seems to go between 0.1 & 0.3 so far.

His health has been pretty good, he's feeling good, lots of plans for this year in the garden and further afield if we can.

Our sex life has developed, ohh can I say that? It ain't what it was, but we are still enjoying ourselves.

We are looking forward to spring, getting outside in the garden and enjoying growing our veggies.

Thanks for the support once again.

Leila.

User

Posted 23 Feb 2021 at 15:45

Lovely to hear from you Leila and it’s all sounding good x

User

Posted 23 Feb 2021 at 17:48

Good to hear fom you Leila. Glad things are going well from another G9er.

Dave

User

Posted 23 Feb 2021 at 20:57

David's testosterone was 16.6 last January ( 2020) and his PSA has risen this time to 0.3 His Testosterone levels are quite high, and his oncologist has recommended another PSA & testosterone test next week.

Is this because the testosterone levels are high or the onco's ' belt & braces' practice.

Your views and advice would be welcomed.

Thanks

Leila

User

Posted 23 Feb 2021 at 22:27

How high was it at most recent test Leila? I don't think it could possibly be that the onco is concerned about recurrence - perhaps he is wondering why the PSA is staying so low when it could have been expected to be somewhere between 1.0 - 2.0 by now.

Edited by member 23 Feb 2021 at 22:30 | Reason: Not specified

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

User

Posted 23 Feb 2021 at 23:03

Not too sure Lyn,his PSA was 0.3 today and his testosterone was 16.6 January 2020. His PSA was low at diagnosis it was 8.5 and he was Gleason 9 tb3, could that be the reason.
Thanks Leila.

User

Posted 26 Feb 2021 at 14:43

As above, any ideas why the oncologist is suggesting repeat PSA & testosterone testing & potential scans, with a PSA last week of 0.3. David’s PSA was low when diagnosed,8.5, he HDR followed by EBRT & 3 yrs of Prostrap.
It has wobbled us a bit as we thought 0.3 was ok?
Any comments would be useful.
Thanks
Leila

User

Posted 24 Apr 2021 at 18:11

Just a little update, we had 5 tons of gravel delivered this morning, and between us we’ve managed to shift and spread about half. What has this to do with PCa you ask, well chaps David is nearly 71 he was diagnosed with Tb3 Gleason 9 he had the full luxury ticket of treatments HD Brachytherapy, followed by 25 sessions of RT and 3 years of Prostrap. His PSA has wobbled between 0.1 - 0.3 Due to the current circumstances we can’t really go abroad travelling,so we’ve concentrated on our garden and growing food.
Our physical relationship continues to blossom, its different and not the same as it was before treatment, but when we are not too knackered from gravel shifting we have lots of fun. I have advanced arthritis in my hip, so our sexual manoeuvres are a little more delicate than in former years, but the mind is willing on both our parts.

I suppose my message is finding joy in everyday things has more meaning to us both, we’ve matured,that’s a posh term for us getting older 😉

We enjoy decent wine, decent foods, and life is good for us. David was diagnosed in in September 2015, and he really thought he’d not have much life left.
My message is, Gleason 9 is serious, and it isn’t easy. For us it’s been a time of sadness, trauma, loss grief,pepperd with laughter, fun and lots of joy, and we still plan, and have plans.

I hope this message gives you a smile and a bit of hope.

Leila x

Edited by member 25 Apr 2021 at 07:54 | Reason: Not specified

User

Posted 24 Apr 2021 at 22:15

Brilliant post Leila, very uplifting. Keep smiling and enjoying your life together.

Angex

User

Posted 25 Apr 2021 at 00:45

Wonderful post.

Dave

User

Posted 25 Apr 2021 at 10:47

Hi Leila, what a brilliant update. Whatever you are doing, it seems to be working! Xxx

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

User

Posted 26 Apr 2021 at 11:02

What a brilliant, uplifting update Leila.

So pleased you’re both enjoying life to the full.

Phil

User

Posted 26 Apr 2021 at 12:51

Thank you for posting. It’s always reassuring to hear news of men who were diagnosed with Gleason 9 and you have a wonderful positive, but realistic approach.

Jonathan was diagnosed in January 2019, Gleason 9 PSA 38.

He has been on hormone treatment since then and has 9 months to go. He has also had chemotherapy, EBR and high dose brachytherapy. He has also used a whole range of supplements etc to maximise his health.

PSA is undetectable at the moment. He has some debilitating side effects from the hormone treatment, and quite possibly some effect on his bowel from the radiotherapy, but he’s been grateful for excellent, prompt and extremely kind treatment and we are both hoping that he will be lucky enough to reap the benefits for some time to come.

Best wishes to you both, Jane

User

Posted 19 May 2021 at 16:16

David has just got his PSA results and it has gone to 1.0, his last test was 0.3

He also had a testosterone test and that is now 18.7 his last testosterone came back at 11.

When he was diagnosed his PSA was 8.5 and he was Gleason 9 Tb3

He is quite concerned about the rise, especially with the hike in his testosterone.

Advice as to whether is advise him to stop worrying and get on with gardening with me, or do we need to motivate the medic.

He’s currently studying the results paper and very glum.

Sadly our GP isn’t a good verbal communicator, neither is David, so the phone consultation could be bl##dy hard going.

Any advice would be great.

Leila

User

Posted 19 May 2021 at 17:21

Hi Leila, as he still has a prostate (even though it will be a fried prostate) he will produce PSA. As long as it stays below 2.1 (2.0 plus his nadir) all is well. It is also pleasing to see his testosterone recovering so well - are the worst of the side effects wearing off as the testosterone rises?

If the PSA gets to 2.1 I would start asking about an onco appointment.

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

User

Posted 19 May 2021 at 17:23

Hi Leila, it’s always a worry when the PSA goes up. Although 1.0 is still pretty low, I understand the rise from 0.3 is worrying . Have you got a appointment booked with your consultant to talk it over?

They told me my PSA could rise to just over 2 after RT and Brachy.

I suspect you’ll have to wait for another test yet as 1.0 is still below the threshold that they think means recurrence. Is David on 3 or 6 month checks ?

Hoping for you that it’s just a blip and it will maybe settle at 1.0.

It’s living on a tight-rope isn’t it...

Best of luck to you both .

Phil

Edited by member 19 May 2021 at 17:36 | Reason: Not specified

User

Posted 19 May 2021 at 18:01

Thanks Lyn & Phil,

Yes Lyn the side effects of the HT have more or less worn off. He’s quite keen on a bit of fun these days 😉He is concerned that the rise could be an indicator. David is a born worrier to the point where he leaves all the investigations to me, he’d be happier if I did all the talking or asking questions. The whole things really gets to him, hence me being here not him.

Thanks Phil, it’s difficult, David loves life, has plenty of living to do at 70, he feels he’s no where near hanging up his spurs for ‘ old age’ he still sings & plays every day, though no gigs now due to current climate. He gardens, and we both enjoy a flipping good life. I’m hoping it’s a blip, fingers crossed.He has his PSA every three months, though he’s chomping at the bit to have one tomorrow. I’m trying to talk calm to him down.

Thank you both

Leila

Edited by member 19 May 2021 at 18:24 | Reason: Typos

User

Posted 19 May 2021 at 18:20

Gunning for you both xx

User

Posted 19 May 2021 at 18:27

Thanks Chris, he’s a right mess this eve, I think I might have to take him to the pub.

Leila x

User

Posted 19 May 2021 at 20:22

That’s my kind if wife lol. You can get through this I know. I truly believe it

User

Posted 19 May 2021 at 22:52

Hi Leila, as you may recall my diagnosis and treatment is the same as your husbands, so I am watching this thread. I am now off HT so my psa is now starting to rise, but still at a very low level. With the testosterone coming back the healthy prostate cells should be waking up and doing something.

The testosterone going up is definitely nothing to worry about. It is supposed to return to normal, and it is not a marker for cancer. PSA is only a cancer marker if it is high; your husbands is not (and don't go saying "not yet", it was going to rise when he came off HT, what number were you going to be happy with? )

I have resolved to myself not to worry unless it goes above 2.1. After all that is the definition of recurrence so why worry if it hasn't recurred. I do have the advantage of not being a natural worrier though.

Good luck. I was going to say "good luck and I hope it stays low", but I think I shall say "Good luck and I hope it stays below 2.1" (of course I am being a hostage to fortune with such an optimistic attitude, but optimists are always happier than pessimists)

Dave

User

Posted 19 May 2021 at 23:08

Hi Dave, Thanks for your reassuring post, I’ve managed to get David to read it! He is sadly a natural worrier. He always seems to look at the negative first and he can get fixated, so a positive post helps a great deal.

Thank you.

Leila

User

Posted 19 May 2021 at 23:35

Thanks Leila, I'm glad you got him to read it, and see how one can be positive. I do worry (ha ha, and I said I'm not a worrier) that some of my posts can be taken the wrong way, so I do appreciate knowing that I'm getting the tone right.

Dave

User

Posted 21 May 2021 at 00:42

Hi Leila,

It's very uplifting as a G9er following a few years behind your husband how very well things are going for him.

I noticed earlier in this thread you mentioned 'He has developed pains and discomfort under his right rib cage, sometimes a sharp pain sometimes a dull ache.' Was that ever explained, and did it go away?

I'm experiencing much the same, though currently just 3 months after RT and 9 months into 3 years of HT. I'd be very interested to know whether it was ever pinpointed what the problem was.

Thanks,

User

Posted 21 May 2021 at 20:16

Hi DaveHz,

Thanks for you post. David is worried as his PSA has gone up from 0.3 to l.0

Although 1.0 is well within safe realms he’s worried sick at the increase. His PSA has been between <0.1 & 0.3, last PSA was 0.3 so a bit of a rise.
He’s a born worrier, and a perfectionist, the mixture can make for hard going sometimes.
I’m working on him getting back into a more positive mode, I’m sure he will move on to more positive thoughts soon.

The pains, yes he still gets them, not all the time now. He’s has had scans and Dexa bone scans and all seems to be ok. This is the first real bit if ill health he’s ever had and it’s been hard for him. He also finds medical intervention very stressful, he hates not being in control.

So, in essence his doing very well, but the psychological aspect to a more positive mindset will follow. He plans to have another PSA in two months, or near that.
He’s watching his footy tream’s under eighteens team playing this eve on the TV that will be good for him.
Music, gardening,world affairs economics and reading are his passions. He does all every day, and has lots of positives in his life.

Thanks for your post, you G9ers are a special bunch of lads.

Leila x

Edited by member 21 May 2021 at 21:32 | Reason: Not specified

User

Posted 05 Jul 2021 at 14:13

David had been looking a bit off colour for a couple of days. Yesterday he had chest pains, he hates being ’interfered’ with and I was told oh it’s just indigestion, mmmmm. Is it. Off to our local hospital after two failed attempts to contact 111

David is seen quite quickly, and I’m sat in the car park no idea what’s going on, not allowed to go in the hospital. Eventually I’m advised he’s having ECG and blood tests. Another long wait in the dark car park, too dark to read my book.
Another update, he’s staying over night, so I’m off home. Today I hear he has had a ‘cardiac event’ and needs a stent but Aberystwyth doesn’t do them, so we have to see if Swansea can fit him in otherwise it’s blood thinners.
The stent needs to be fitted within three days, so we wait. He has no signal for his phone,so I don’t really know what’s going on.
Just as we were beginning to think we are doing well! David doesn’t like hospitals, he hates not being in control, or left in the dark. I’m hoping Swansea Morriston Hospital can do the stent, or I may see if he can go somewhere else to get the deed done. Ok, I’m rambling now. I knew being on HT for three years had side effects but I hoped he’d been lucky.
thanks for reading I f you have.

Leila x

User

Posted 05 Jul 2021 at 14:37

So sorry to hear this Leila. I hope David can get his stent done quickly and then hopefully back to normal - whatever normal is …..

Good luck 🤞

Phil

User

Posted 05 Jul 2021 at 14:45

So sorry to hear this Leila. I freak out in hospitals too so I get that. Utter panic. Good luck and best wishes x

User

Posted 05 Jul 2021 at 14:56

Leila. I spent 3 weeks in Aber after my op, there is really good WiFi that is free but you have to register on your phone...

User

Posted 05 Jul 2021 at 15:03

Hi Leila,

You know we are always here for you. Yes it's a bit of a shame having the "cardiac event", it probably has nothing to do with the HT or the cancer. Life just throws these things at us and we do our best. It isn't that unusual to need a stent in your 70s or sometimes younger. I'm afraid us humans are a bit like an old car, the clutch goes, it won't cost too much to replace it, then the radiator goes, it won't cost too much to replace it, then the ... goes, eventually you realise it's time for the scrap heap.

I'm not saying David should be going to the scrap heap just yet, I'm sure there is a lot more patching up they can do, it might be years before the next thing that goes wrong. Though for my old car it was only six months between the clutch going and the radiator going, so off she went.

Just seen francij post about wifi, sounds a good idea, you can then use WhatsApp or some other app to do free calls without needing a mobile phone signal.

Dave

User

Posted 05 Jul 2021 at 17:05

Thanks for that I’ll see if can do that. David is a bit like the late John Macafee, he’s very tech savvy but chooses who he communicates with.

i’m going to take his iPad to him, he can then write down what he can’t say. another trip to sunny Aber.

Leila.

User

Posted 05 Jul 2021 at 17:17

Ahhh, thanks for the support, it’s is so good to know you are there. David is computer savvy, clever and articulate, but he doesn’t like phones, he has a mobile, but it’s a pay as you go used maybe three times in the last two years. So, I’m taking his iPad there, he can then write to whoever he wishes. It seems the stent can only be done at Swansea, and only if they have space.so fingers crossed they have a slot for him.
Living rurally is great until something like this happens then its a pain.
I’ve just spoken to him, chest pain abated, seem not too much damage, he will have meds to dissolve the clot.I assume he will have warfarin (rat poison) That’s the total conversation from him.
when he can write I’ll get a full report.
thanks for being there.. it really helps.

Leila xx

User

Posted 05 Jul 2021 at 19:41

RT/HT. Nigh on 17 yrs later my profile shows PSA still moves around a bit.

Ray

User

Posted 05 Jul 2021 at 20:56

Thanks Ray, all this positive stuff is passed in to him.He was asked about a DNR today, well, that wobbled him big time! Just what he needed. He has his iPad now and I’ve chatted to him. Assuring him I am not looking to be a “widda of the parish “ just yet.
His PSA is due next week too.
once again thanks for the support.

Leila x

User

Posted 06 Jul 2021 at 01:11

How frightening for you both. It does put me in mind of Trevor_Boothe though - if you don't know Julie it will be worth you looking for some of her old posts as I think Julie's coping skills and ability to put pen to paper might be a tonic for you. Trevor was diagnosed with a PSA of 13,000 - went on to have two major heart attacks and a stroke plus other emergencies (pneumonia at one point I think) at various points so she (and the rest of us vicariously) became very familiar with the blue light brigade. He rallied every time and repeatedly put all the medical predictions in the bin.

Julie once wrote a poem on here about being on a train journey - it was funny but also tragic ... it made me cry and I never cry. I will try to find it for you. Hang in there x

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

User

Posted 10 Jul 2021 at 11:16

Well, after a very turbulent week and being moved from Aberystwyth to Swansea David is now home. He hates hospitals with a vengeance, but he managed to stick it out and had a stent fitted yesterday.It seems he had a cardiac event last Sunday. He did get to have a ride in an ambulance when the England match was on and felt well enough to cheer the lads on. The paramedic and driver were footy fans so it helped the journey with a bit of team spirit & fun. The surgeon cardiologist agreed hospitals were not good places to be and said he could possibly go home six hours after his stent had been put in. Apart from loathing the hospital atmosphere, and him being out of control,which he hates, when he got to the actual procedure of having the stent fitted he said it was fascinating, so much so he asked to see it again, with full explanations.

The surgeon who did the procedure asked how old he was, he said 71 today, the guy was very complimentary about his fitness. David replied I'm in good fettle then for a 71yr old who has had PCa Gleason 9 and a heart attack then? The Dr. said don't knock it, you are in pretty good shape for your age. They also asked about what he used to do, he said pro musician, it was suggested he could give them a song and play when he was finished, David said he could but they'd have to book him in.

David seems to have been quite lucky, he only needed one stent, and has a cocktail of drugs that would make El-Chapo jealous. He has a selection of bruises and puncture wounds, needs a shower as he can't have one till tomorrow, but he is feeling better already. Full of praises for the technology and efficiency of the procedure, but sadly he hated the food, and the staying there until the deed could be done.

He will have a few days to rest, then another PSA is due. When all that is done we have three dumpy bags of bark to move, and a house to paint. So, he'd better rest while he can and get strong. We have lots of living to do.

As I type he's fast asleep, he has hardly slept, all the time he was in hospital, he said he doesn't think they are good places for poorly people to be in😎machines going all night, bodily functions abound and the bed was uncomfortable. Other than that he seems to have survived the experience.

Being an 'almost' dutiful wife I will prepare his breakfast and make him cuppa. I'm sure more updates will follow.

Thanks for reading my waffle if you have.

Leila xx

User

Posted 10 Jul 2021 at 11:37

Ha! Brilliant news although I had to google El Chapo :-/

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

User

Posted 10 Jul 2021 at 12:01

That's great news. Some moments in the football game could have gave anyone a heart attack.

Dave

User

Posted 10 Jul 2021 at 14:09

Fantastic Leila:-))

User

Posted 10 Jul 2021 at 15:29

Thanks people, Lyn, you have led a very sheltered life. I thought everyone knows

who El-Chapo was.😂

Edited by member 10 Jul 2021 at 15:39 | Reason: Not specified

User

Posted 10 Jul 2021 at 16:12

If he had been a well known purveyor of duty free cigarettes, I would have known him

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

User

Posted 10 Jul 2021 at 17:28

Haha, He was purveyor of much more interesting plants. Evidently he looked after his plantations workers and their families. Mmmm, I bet he did.

User

Posted 29 Jul 2021 at 13:37

David is recovering from his ' Cardiac event' and had his PSA result today. It has gone up to 1.1 this is the third rise in a row.
PSA August 13th 2020 0.2
PSA 20th November 2020 0.1
PSA February 22n 2021 0.3
PSA May 17th 2021 1.0
1.0 Testosterone 18.7
PSA July 29th 2021 1.1

Diagnosed September 2015 Gleason 9 TB3
HDR Brachy April 2016
EBRT June 2016
Three years Prostrap
Last Prostrap March2018
He has been off any PCa treatments since March 2018

I've just given David a copy of my full notes, and he's quite surprised how long he has been off the HT.
Thank goodness he has someone to keep his notes up to date
Concerned that this is he third rise in his PSA, the specialist nurse has advised him no action will be taken until his PSA reaches 5 or more.

David hates hospitals, any type of interference and now he has more medication he's right pi**%d off. I've bought him a dosset box, to make sure he takes his meds at the correct time and right amount.He has said he now feel he's getting old. I've advised him he can't do that or I'll have to look for a younger model

Next appointment with cardiac clinic mid August.

I think a trip to his favourite pub might be in order this eve.

Leila x

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