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Worry about meeting the consultant on Monday

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User

Posted 22 Feb 2022 at 09:22

still does not feel right leaving him alone at home for 9 hours while I am at work especially has he has to inject himself with bloodthinners for 4 weeks. I would not be able to concentrate at all. I would worry about his mental state - since yesterday he again has clammed up about how he is feeling and all I get is "I am fine". Do I have to use the hammer method to get him to talk to me again? Before yesterday I actually had to threaten to divorce him for him to talk to me about is feelings and anxieties and if he does not tell me how can I help him?

User

Posted 22 Feb 2022 at 09:39

Desperate housewife

Cancer is a massive shock. Sounds like your husband is really struggling and finding it hard to talk about it. If it doesn't feel right leaving him just now, then don't! Perhaps you being at home for a bit to give him that extra bit of emotional support will be enough for him to bounce back. Sure he will talk when he's ready. Best wishes

User

Posted 22 Feb 2022 at 09:56

The blood thinning injection takes about 10 seconds to do, and the hospital will show him how to do it. You basically just pinch a fold of flesh on your stomach, stick the needle in and press the plunger. Couldn't be simpler, and doesn't hurt at all. It's all designed for use by "non experts".

If your job allows you to work from home, and you'd feel better doing so, then do so. All I'm saying is that there's absolutely no medical necessity that you do so. To be honest, when I was recovering from my surgery, I just wanted to be left alone!

Best wishes,

Chris

Edited by member 22 Feb 2022 at 10:27 | Reason: Not specified

User

Posted 22 Feb 2022 at 12:35

Hi DW

It sounds like you have decided to go down the RP route. Has the surgeon indicated what sort of surgery he is planning? Robotic/laparoscopic/open? If its open surgery then he may need a wee bit of support for a few days. For the other two, as others have already said then no real "nursing" is needed post op.

User

Posted 22 Feb 2022 at 12:37

Originally Posted by: Online Community Member

Do I have to use the hammer method to get him to talk to me again? Before yesterday I actually had to threaten to divorce him for him to talk to me about is feelings and anxieties and if he does not tell me how can I help him?

DW , sometimes we men need a good kick up the backside 😀. I got a PSA test almost by accident, when the elevated PSA came back and a quick referral was made I shut my wife out. It was my body my problem, I was going to sort it out my way. I would talk to work colleagues and even strangers about prostate cancer but not my wife. The first time I involved my wife was asking her to drop me off for surgery. In hindsight I was very selfish.

Fortunately my wife was very forgiving and gave me all the physical and mental support I needed. My wife had a week off work, and then went back to work, she only worked a mile from home so did nip back at lunchtime. I had robotic surgery and was soon able to get around. My wife did the injections at night, she also connected and disconnected my catheter night bag.

Thanks Chris

User

Posted 23 Feb 2022 at 07:17

Hi Chris, thank you for the book link, I will try it.

Your comment about your body your problem is exactly the answer I got from my husband. He is sort of telling me how he is feeling which I take as a positive. He is also reading the booklet on Kegel exercises saying that there might be something in it and he is doing more exercise to improve his fitness levels as my argument made sense to him (told him the fitter he is the faster he hopefully will recover) He has also decided, yes, going to a support group meeting could be a good idea. So things are looking better.

Just now waiting for the bone scan (the consultant does not expect any problems there), the meeting with the surgeon and oncologist and the surgery (been advised by the consultant to have the surgery first as if he needs treatent at a later date he can have the radiotherapy, but if he has the radiotherapy now having surgery is very difficult). Hopefully all will be finished by June and he can enjoy our son's & family visit (they do not live in Europe) feeling fit and healthy again.

Just one negative question - does anybody know how often surgery fails and radiotherapy is required? And how often that then fails and HIFU rescue (1 NHS consultant in southern England as per Prost8 website) is required?

Sorry for the negative questions, but I like to have all the information handy so I can plan ahead (just a personality trait)

User

Posted 23 Feb 2022 at 07:19

Hi Music Man, the plan is robotic surgery (our hospital does over 90% robotic as per BAUS) with 1 set of nerves spared (cannot save the other set as the cancer is to close to that side)

User

Posted 23 Feb 2022 at 10:17

"Just one negative question - does anybody know how often surgery fails and radiotherapy is required? And how often that then fails and HIFU rescue (1 NHS consultant in southern England as per Prost8 website) is required?"

About 25-30% of men go on to have a biochemical recurrence after surgery. If the primary treatment fails, the chance of ever achieving full remission is significantly lower regardless of whether you have surgery followed by RT or RT followed by surgery. The trouble with surgery after RT is that it is technically difficult, unlikely to be nerve-sparing and the risk of incontinence and ED is very high.

HIFU isn't usually done as a salvage treatment after failed surgery and failed salvage RT.

Edited by member 24 Feb 2022 at 00:15 | Reason: Italics

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

User

Posted 23 Feb 2022 at 11:00

I did my pelvic floor exercises for quite a few weeks before surgery, the advice seems to be three sessions a day and vary between the long hold and short hold exercise. I probably did alot more that that. Four days after catheter removal I was 99 percent dry, so well worth doing.

To answer your question another way in 70 -75 of cases surgery are successful.

Thanks Chris

User

Posted 23 Feb 2022 at 19:13

next step - hospital rang to say they had a cancellation, could he come in on Friday for his bone scan. Does anybody know how long it takes on average to get the result and do they just tell you or do you have to wait to see somebody? Thank you.

User

Posted 23 Feb 2022 at 19:41

Mine took 3 days 👍

User

Posted 23 Feb 2022 at 21:33

Re looking after him, he should be fine to potter about, if he isn't leave him in hospital for another day! Important to move about so getting up to make tea etc is perfect exercise for the first week, just don't let him do anything remotely strenuous or fast.

Glad you are concerned for him, hope my previous comment didn't come over as harsh, I am a little scarred in "support from wife during prostatectomy dept" folks on here are probably fed up with me bleating on about it!!

All good now though!!

User

Posted 23 Feb 2022 at 22:55

For the bone scan, expect to have to go for the appointment, where he will have a radio-active liquid injected, You will then have to go away for a couple of hours for it to circulate, then go back for the scan, which takes about 20 minutes. I was warned not to go near any small children or pregnant women - seriously! There was even a special toilet for 'irradiated' people to use so the radioactive urine did not contaminate the sewers. That was my experience, anyway, and I have only ever had the one - maybe yours will be different. I got the results at the meeting with the oncologist. There was a small mark on my 7th rib, but not a cause for concern - 'could be anything, really, maybe a scar from a previous injury,' but no worries about it being cancerous.

User

Posted 23 Feb 2022 at 23:54

I’m very new to this but I have had a bone scan. Mine was about 50 mins as they did me top to toe. I found the feeling to be much like an MRI in that the scanner can be quite close to you. But none of the banging, grinding and bumping thankfully!

User

Posted 24 Feb 2022 at 00:12

Originally Posted by: Online Community Member

I don’t think you bleat about it at all francij; it was a terrible thing that happened to you. As you may remember, our dear friend’s wife left him after the RP - she said that having seen him with his penis in a vacuum pump, she would never be able to feel the same way about him again. He also went on to find a kind, supportive and loving new partner and is now very happy but to be rejected when you are most vulnerable is dreadful.

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

User

Posted 24 Feb 2022 at 06:44

I would not leave him because he has to use a vaccum pump or anything else to get an erection, not bothered how just that he can get one because if he could not he would be very unhappy. I am glad to say we have a strong marriage. The thing I want most is that he is rid of this damn cancer and in the end can enjoy life to the fullest.

User

Posted 24 Feb 2022 at 07:23

My husband just apologiesed to me for upsetting me - I asked him when he volunteered to get this horrible disease? I told him that I am not in any way upset with him, but for him. I hope he is now ready to talk about how he really feels and gives me a chance to either help him myself and get the appropriate help.

User

Posted 24 Feb 2022 at 10:22

I am not sure what appropriate help you have in mind, desperate wife. The point is that your husband is only at the start of a horrible time - talking to you or getting counselling isn’t going to make that go away. Maybe in a few months or this time next year you could start thinking he might need some appropriate help but right now, he just needs to get through it.

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

User

Posted 24 Feb 2022 at 11:28

Hi Lyn. Not sure I can agree with you about 'the start of a horrible time'. I found the experience of having, and being treated for, prostate cancer was certainly unpleasant at times, and worrying, but I could not say it was horrible. I was reassured by the way in which NHS staff, the consultant and the radiographers and the specialist nurses all treated it as a routine matter which they were going to put right. OK, nobody would choose to go through it, but having been diagnosed with pc, you just have to aceept that if the NHS staff tell you it will probably be cured, then it probably will. That said, my GP called me in for a chat about half-way through the treatment just to 'check how I was doing'. He told me (much to my surprise) that some men just fall apart at the mention of cancer, and that suicide is not unknown., My attitude of 'Crap happens - let's just get on with it' seems to have got me through. Talking to the group of men I met every weekday at the radio therapy sessions helped too - however bad I felt, others were in a much worse state. And also, seeing people going in for radio therapy for other (non pc) cancers, people on trolleys, people sedated, with custom-made face masks to protect parts of their head, all helped me to put my situation in perspective. Nobody would say the treatment for prostate cancer is pleasant - but I would not say it was 'horrible'.

best wishes to all,

Hermit

User

Posted 24 Feb 2022 at 13:08

I meant horrible as in the process of being told you have cancer, choosing a treatment, worrying about whether it was the right choice, worrying about the potential side effects, worrying about the real side effects, spending the rest of your life wondering whether it is going to come back.

You and Bollinge may be of personalities that just take it all in your stride but the vast majority of people diagnosed with cancer will find some aspect of it horrible. John's coping mechanism is to immediately wipe all negative information from his mind and live in blissful ignorance - this has served him well for 12 years now but it does mean that every so often, a PSA rise or the news that the cancer had come back came as a huge shock to him because he has only retained the bits of information he likes 🤣

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

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