Reaching Out For Support

User

Posted 16 Dec 2019 at 12:44

Hello,

This is my first post having decided to join the forum and openly discuss my feelings. In September at the age of 56 I was diagnosed with prostate cancer with a G score of 4+3 - 7. Cancer was on both sides of prostate and extensive on one side and as such I had a bone scan to ensure it had not spread, which thankfully it had not! The treatment I was recommended and chose was a prostatectomy, and on 2nd December (just 2 weeks ago) I had the operation. The operation lasted 5 hours and my experience of post up recovery was not particularly good to be honest. The immediate after effects coming round from my anesthetized state (which included having an epidural) were the worst I'd ever felt. Shaking viloently, felt iced cold, thirsty and with a terrible headache and very nauseous. I was in recovery for about 90 minutes before being taken to a full ward, by which time I was getting excruciating pains in my shoulders (caused by trapped gas). My wife was waiting and as it was now evening (8.30pm) there was only just one nurse and an auxiliary present, doing their best to look after 12 guys. I complained about the shoulder pain and it took about 20 minutes before I was given pain relief because the nurse was busy dealing with the other patients. There was only one other chap around my age - all the others were in their seventies, eighties and possibly older. My wife was asked to leave at 9.30pm and I was left alone, unable to move from the waist down, was given water that I struggled to drink because of the shaking, had only a salad to eat and left amongst mayhem! One elderly gent had dementia and was constantly shouting and screaming throughout the night, another in a bed next to me kept shuffling around his bed and getting up regularly to pee in a bottle type thing placed.on a table next to my bed - my privacy curtain was not pulled, so I had this guy in full view. The morning was not much better, I'll spare everyone the details, but my impression was the hospital was understaffed and morale not particularly high, little empathy for patients and I was so pleased to be discharged later that day at 7pm early evening!

The next hurdle was coping with a catheter fitted, which within 2 days became blocked with blood and had to return to hospital to get cleared. Anyway, I found sleeping really difficult, was a welcomed relief to have the awful thing removed 9 days later. My battle now is leakage and I am constantly needing to urinate, which maybe due to a urinary infection being checked out tomorrow.

I am very grateful to the surgeon and medical team, but the NHS is struggling and even trying to get a GP appointment is difficult - the care system is struggling in my area. The support from the Macmillan nurses has been very good and Prostate Cancer UK very informative.

But I am really struggling with my emotions, despite trying to think positively, I am feeling very low and anxious. This journey over the past few months leading up to my operation and working full time has been a struggle. It's impacted on my life in so many ways, and the ED is but another phase I will have to cope with in the coming months / years.

I've read plenty of positive postings and it does help to read such posts, but equally it makes me feel slightly ashamed that I am not one of those at present that can post anything uplifting. Hopefully as time passes I will able to post something to inspire others.

Anyway, thank you for taking the time to read my post, just being able to put down in words how I truly feel has in itself helped.a little.

User

Posted 28 Jan 2020 at 16:53

Hi Andy62,
I am taking a drug called Sildenafil, it's to stimulate blood flow. My surgeon told me that only a few nerve endings were spared on the left side of the prostate, but they bled and had to be stitched, which is not desirable.
As for a local support group, mine meet infrequently and from what I've heard it's members are much older than me, majority of.which are retired and have plenty of time on their hands. Not really comfortable talking about penis shrinkage, ED and the various ways of managing the problem with folk who lost their Mojo years ago!
I don't think there is enough research done on the mental impact on a healthy man with post surgery ED. Yes I'm grateful to be alive, sex and the ability to have natural intimacy with a loved one is but only one component of a relationship. However, for me it is an important part. It's early days, but the thought of having to inject, pump up, rub cream, swallow tablets to pre-plan an erection only to have a minor dry orgasm is very depressing!
I'll end this particular post on a positive note; life is good, relationships are based upon so much more than the intimacy I want to rekindle. In time I'll be more.accepting and will adapt, but my mantra using this forum platform is to speak frankly and.honestly and appreciate those who take the time to read my posts and thank those of you motivated to reply.

Edited by member 28 Jan 2020 at 16:55 | Reason: Not specified

User

Posted 28 Jan 2020 at 17:09

Rick maybe click my picture and read my profile. I’m utterly understanding on your situation and have helped many men and women on the subject of ED. Ask away or contact me privately. I’d happily speak to you on the phone for a good old chinwag and how I overcame all this. There is a post on here called “ erecting the erection - medication ‘ which is really useful. However the search engine on here is utterly tragic and I don’t know how to link. Just don’t give up and keep your mind open , as I was once in your shoes and now face imminent hormone therapy which will end it all again and I’m simply dreading it.

User

Posted 30 Jan 2020 at 13:27

Hi Chris J & co,

I was a bit down the other day when I last posted on this thread, but much more positive today! It's very early days, I guess I just need to be patient, I've now got an appointment at my local hospital for the end of Feb, seeing a ED specialist.

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User

Posted 16 Dec 2019 at 14:36

It’s good to write things down mate. It purges you. Your experience sounds similar to mine but I was only 48. I actually had a breakdown in hospital and was stuck in the mayhem you describe for a fortnight. It’s a very new normal to you at the moment but it does slowly get better I assure you. You’ve been through hell physically and mentally remember so give yourself a break in all ways and stuff will start to improve. The ED is life changing but there is a chance of recovery if you work at it. Take care of yourself for a while

User

Posted 16 Dec 2019 at 14:53

Never feel that you need to apologise for feeling down and apprehensive, Rick. Most of us here have been where you are now and know exactly what it's like. My one suggestion would be that if you are struggling with feelings of anxiety, ask your GP for medication to help. I had real problems mentally after I was diagnosed - for a while each test I had showed new and even more awful things wrong - and my GP prescribed a medication called Sertraline which really helped me. I was on it for a few months until I'd come to terms with the situation and it was a tremendous help.

Best wishes for a speedy recovery,

Chris

User

Posted 16 Dec 2019 at 15:18

Hi Rick

You have had such a tough hospital time.

Emotionally this journey is a rollercoaster as others will say here. Positivity is easier said than done. Meditation might help. I would write down how you feel at least that would get the thoughts out of your head.

You will find understanding and support here. Have you a friend you can share how you feel with ? Or call the nurses. Take it day by day it will get better. My husband 63 had an RP 22nd Oct. He found the first month with the incontenence really hard to deal with. You have been through a major surgery and it will take time to recover from physically and emotionally. Take care of yourself. Drinking loads of water helps to avoid getting A UTi.

All the best.

Edited by member 16 Dec 2019 at 17:23 | Reason: Not specified

User

Posted 16 Dec 2019 at 15:48

Rick. I’m 59 and now coming up to week 11 after my RP and I can assure you that things will get better. I had a similar feeling of wanting to pee and this was an infection that antibiotics cleared up. I was also really worried about incontinence and remember every time I stood up I would pee but regular pelvic floor exercises has improved this greatly.

Hope this helps and take care.

User

Posted 16 Dec 2019 at 16:30

Hello Again,

Thanks for your swift replies, I really do appreciate the kind words of encouragement and support. I'm very fortunate to have a loving family and good friends, but being able to share my experience with those of you who have knowledge of this awful disease and are living with it or with a loved one, is so important. We all might be strangers to one another, but showing empathy and understanding to a fellow sufferer and being able to feel able to share honestly how one feels is a release. As said, the physical issues are a challenge, one I'm determined to overcome, it's the mental side that I'm really struggling with. Been trying to be positive and not show my true feelings to those around me, but I feel so low, probably not helped by the poor weather and dark evenings. I guess the medication and anaesthetic still in my system is having effect on my emotional well being - normally I'm a person that copes well with lifes challenges / stress, but not in my current frame of mind. The ED element in particular makes me depressed and whilst it's not the end of the world, for me personally it's a major part of feeling like a man. My other paranoia is the worry of further complications and worse still that all the cancer has not been removed. I have this dark despairing feeling that occasionally comes over me, particularly when lying in bed during the middle of a sleepless night - I try to snap out of it, but can't I just have to let it flow over me until it passes. I'm currently signed off work for 6 weeks, but really do not at this stage feel like I can face work,hopefully after Christmas I will feel more positive and confident to return to full time work.

User

Posted 16 Dec 2019 at 16:59

Hi Rick All those feelings and fears are normal especially when you are awake in the night. Poor weather and dark days really dont help.

Have you tried napping it helps you feel.less sleep deprived. Think how far you have come so far. Day by day.

8 weeks Post RP and my husband is beginning to control the incontenence not the other way around. Patience is required

Gentle walking helps you if you can.

For when you're able can recommend

The NHS Squeezy for men app helps with pelvic floor exercises.

Glad that you have family and friends.

Dont think about rushing back to work until you feel able.

Edited by member 16 Dec 2019 at 17:11 | Reason: Not specified

User

Posted 16 Dec 2019 at 17:15

Agree with what Chris J posted . No one can tell you what your own experience will be.

Keep posting.

User

Posted 16 Dec 2019 at 17:55

Rick it’s so early ok. Yes I have trouble with depression and darkness. Yes ED was a MAJOR cause of concern to me as was continence but I’ve 98% recovered from both. Trouble is , if you read my profile , they failed to get the cancer so I’m now incurable. If they had got the cancer I’d be laughing. I agree with asking for temporary help with sleeping or depression. There isn’t anything I can’t help you with re getting an erection again but give it 3 months lol. It can take ages but you know how time tends to fly by as you get older. If you can be open with your wife it can actually be a very bonding time getting through all this and even provide more intimacy than before the op. Try chill a bit !

Oh and I meant to say I’ve had a councilor for 3 yrs. I know I’m lucky I can afford it either weekly or fortnightly but she is an utter gem who has helped me immensely not just with the cancer. If you can manage that then go for it

User

Posted 16 Dec 2019 at 18:35

Treatment is a lottery; some get through it with relatively little pain and where relief is soon effective but those at the other end of the experience can have a very hard time. The only words I can say are things will get easier for you but time to become fully continent and overcome ED can be very variable.

Hope you make good progress and above all your treatment eradicates this rotten disease.

Edited by member 17 Dec 2019 at 03:45 | Reason: spelling

Barry

User

Posted 16 Dec 2019 at 18:56

You have had an awful experience and it is sad that the ward was so understaffed. It will take time, not only for you to get over the operation itself but also the shock of diagnosis and the associated fears and anxiety which are absolutely normal.

It takes time to process it all and start to live a new normal again. Hopefully you will find that you will recover fully with continence and other problems. Do talk to your specialist nurses - they will answer any queries with empathy and understanding. We have used hotline to our team when worried or concerned and they have always been able to offer helpful advice.

Don't try to rush things - take your time and rest when you can, even if this is just "forty winks" now and then.

never feel embarrassed to bring anything up if your are worried.

Good luck and hope to hear that things improve over the next few months.

Edited by member 16 Dec 2019 at 22:38 | Reason: Not specified

User

Posted 16 Dec 2019 at 21:37

Hi Rick,

Surgery 7 weeks ago today. I think I am doing okay and in fact when asked by family and friends I say “a lot of fuss about nothing” but this is not how I feel at 4 in the morning when I get up to pee. And this week, I can feel myself getting a bit hyper as I have to go for PSA blood test. Told my daughter no issue....”all clear”......not even considered any other outcome (more bs by me)......actual feed back Jan 2nd.

My brave face is a considerable amount of b... s... so thank you for your honesty and looking at other posts, there are a lot of us here who understand how you feel. I have said in my other few posts how good this site and the community is.......it helps to talk especially, when those listening know how you really feel....this and reading other conversations has helped me......and prior to surgery I spoke to the MacMillan nurses for support.......I was close to cancelling both biopsy and then surgery.

Here to chat....

Kev

User

Posted 17 Dec 2019 at 00:02

Hi Kevin & Co,

The refreshing thing about this forum is we can hide our identity details, but don't need to hide now we truly feel. When I first told my employer of my cancer diagnosis a few months ago the response from the female HR manager was that I was lucky to have and I quote "one of the better cancers"! Whilst she was trying to be positive and kind - to me it felt she did not really have any clue on the impact a diagnosis of prostate cancer has on a man. More men die of this disease than women apparently die of breast cancer, imagine her reaction if our roles were reversed?

The truth is there is an expectation on men (even in these more enlightened times) to maintain the BS stiff upper lip. People don't know how to deal with a guy who becomes emotional or is showing signs of distress, hence why so many of us try and lock away how we really feel. Had a few friends visit over the weekend and they all commented how well I looked, I just smiled and put a brave face on show - but in my head I wanted to scream out!

I hate night time, I hate needles, but for the 28 days post operation I must self inject in the stomach before going to bed. I struggle to sleep and still have to go to the toilet several times through the night - I have a very weak bladder. My condition and bottling things up during the day plaque me at night with dark thoughts. I have shared some of this with my wife, but not the full extent as I don't want to overly worry her. She has a very poorly elderly mother in her nineties now in care and the childhood home recently sold to cover the £1250 a week care home fees! This makes us both feel very angry, something I know is a national scandal, it's not just the difficulty in getting the support it's the extortionate cost that comes with it and forsaking all your possessions (home & contents) to pay for it.

Sorry going off track I know - but it's all this and the state of our country and the broken political system that just adds to the way I feel.

At the end of the day, our health and happiness and that of our loved ones is what should be paramount, our other troubles, pale into insignificance and if nothing else cancer for me is a wake up call, puts all my troubles into perspective. But it does not stop me feeling down and that is I fear going to be a long battle not easily won. But knowing I'm not alone in thinking the way I do is a positive start, making this first step by asking for support via this forum is but one of a number of.steps I will take to get me through this difficult time - thank you all for responding to my plea for help.

User

Posted 17 Dec 2019 at 08:34

Rick and Kev

You are echoing how my husband feels. All ok to the outside world but it is all B....S as you say. When at a lunch on Sunday he was told how well he looked despite feeling shattered low leaky 8 weeks on. having driven and interacted socially. First outing. Christmas will be hard as PSA anxiety comes and goes. This diagnosis has brought things into perspective and made us realise what is really important. A friend said we were on a long journey for sure. Helped by the support here.

Edited by member 17 Dec 2019 at 09:12 | Reason: Not specified

User

Posted 17 Dec 2019 at 08:47

Your hospital experience was similar to mine. I got no sleep and was feeling pretty rough when I escaped the next day. However, after a few days rest at home I began to feel better in every way and now, 1 year on, things are mostly back to normal although I have not come through this totally unscathed. Good luck with your recovery and have the best Christmas that you can in the circumstances.

User

Posted 20 Dec 2019 at 18:31

Hi Rick,

how are you doing?

Best

Kev

User

Posted 20 Dec 2019 at 18:43

Hi Rick

How are you doing.

Best wishes

Bucks Lady

Edited by member 20 Dec 2019 at 21:13 | Reason: Not specified

User

Posted 20 Dec 2019 at 19:01

Hi Folks,

Feeling a bit better, I seem to fluctuate in my mood, but I guess it's very early days post operation. I am finding my bladder seems to hold far less than before, far too frequently do I feel the urge to go to the toilet, thought I may have a urinary infection but a test earlier in the week was negative.

It's still another 4 weeks before I get my follow up referral to meet with my surgeon to find out how well the prostatectomy went. Hopefully the PSA test will be very low and that there is high confidence all the cancer was removed, but appreciate no guarantee can be given.

Regards Rick

User

Posted 20 Dec 2019 at 20:07

Hi Rick

You have been through a major operation so mood fluctuation would be expected. Hubby had a lot of bladder irritation and leaking for the first few weeks.

Stay positive and have as good a Christmas / New Year as you can.

User

Posted 20 Dec 2019 at 22:59

Hi Rick,

Went to get blood test today for psa. Feed back 02/01/20. I am pretty sure all sorted. I feel okay as I am now able to do much more almost day by day.

Still wearing pad but usually just daytime (as I am busy) but I need to do relevant exercises for bladder control and drink more water to build up bladder capacity.

I have seen physiotherapist privately (NHS waiting list issue). This has helped as she usually works in NHS and has extensive experience dealing with guys like you and I. She has said I must be more patient.

ED ???? Too early......”be patient”.

However do not be surprised if you are tired.....only real issue at moment.

Take care....enjoy Christmas.....have a beer even if it means an extra few trips to loo...

Best

Kev

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