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.

If life gives you lemons , then make lemonade

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.

Show Most Thanked Posts

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

If life gives you lemons , then make lemonade

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

If life gives you lemons , then make lemonade

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

User

Posted 21 Dec 2019 at 13:17

Wishing you the best for a positive result Kev.

User

Posted 02 Jan 2020 at 20:30

Hello Rick,

I am 60 and had a robot prostatectomy in November last year having been diagnosed in October. Thankfully for me, all the tests since have been positive, but the mental issues can be overwhelming - you are not alone.

Like you, I had some terrible post op complications with haematomas and infections and had to be readmitted under a blue light for 5 days. Looking back on last Christmas, I now realise how ill I was, but one year on, I have no catheter (hooray), good(ish) bladder control and feel physically OK. Every month I got a little better and after 12 months, I am physically in a much better place - all that despite needing more surgery in April to remove a grumbling gall bladder - piece of cake after the prostate op!

Everyone will, be telling you to be patient and that you have had major surgery - they are right! It really does take at least 6 weeks to feel anything like normal - at least it did for me. Just do all the sensible stuff - eat well, take exercise, don't stress out and do the pelvic floor exercises !

The regular PSA checks are a mental hurdle to contend with as the answer is only ever going to be a yes or no, but even if you do have a setback, there are loads of ways you can still get better and have a good long life. Fingers crossed for you that they nabbed it all during surgery - I was Gleason 2a grade 7 and the prognosis is good for me now.

I am still suffering with ED, despite many treatments. Viagra made me really ill and Caverject injections (ouch) are the latest thing, to no avail. My wife is very understanding, (my mates less so, but I think they mean well) and it does really get to me, although I keep it well hidden. Most people do find a way forward eventually, so again, I am afraid it the old patience routine and try everything they offer you. I hope you have some joy soon and you really do need to "practice" - imagine getting that kind of advice from a doctor when we were 15!

Be ready fo the dark days/nights - they happen to most of us, but with the support of family, friends and the people on here, you will get through this. You are to being weak if this does happen to you - we need to drop the macho stuff and recognise how touch a cancer diagnosis really is.

I still feel very anxious about what I have gone through and what may still lie ahead - it feels like a type of PTSD to me, although I have never really talked to a professional about this. I like to keep my deeper feelings to myself, which is probably not helpful, but everyone finds their own way and it is reassuring to read on here how others have experienced the same thing.

So - keep your chin up Rick - 2020 will be a good year for you. There is no sugar coating on this forum, but it helps us all to share I think. Best of luck to you my friend and if you feel I can help, then happy to reply.

Mark

User

Posted 03 Jan 2020 at 00:32

Great post, Mark

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

User

Posted 03 Jan 2020 at 18:30

Thanks for your post Mark, much appreciated. I know that once my incontinence battle has been won, coming to terms with life long ED will be the next big challenge! As already stated, I look in appearance healthy and family and friends are keen to remind me of this fact. But I'm not ok, but acknowledge its going to take time for me to come to terms with my condition and accept that life will never be quite the same again. I still strangely find it hard to accept I am a cancer patient!

User

Posted 04 Jan 2020 at 14:07

Hi Rick,

I wish you best for new year and suggest you make max use of this site for support...and humour. Do not forget you also have access to specialist nurses as you can talk directly with them about any issues of concern. I have talked to some excellent, supportive people and in truth I have found these conversations more beneficial than talking face to face with doctors, nurses or family.

This has been my experience and I definitely appreciate it is different for each of us.

Best to you my friend

Kevin

Edited by member 04 Jan 2020 at 19:54 | Reason: Not specified

User

Posted 18 Jan 2020 at 18:40

It's just over 6 weeks now since my operation and I got my first PSA results yesterday of 0.01, whilst I was hoping for zero this has to be the next best outcome, i.e. the lowest detectable figure. I've read somewhere that anything under 0.03 is considered as an excellent result and the individual can be considered as now in remission. Next week I meet my surgeon for my first follow up consultation since the operation itself. Not too bad incontinence wise, wearing a lightweight pad during the day and night.

Reference ED, I'm taking PDE5 - half a tablet prescribed every 3 days to stimulate blood flow, but has no effect on getting an erection. I know this is going to be much slower in progress and I think for me - no longer having an active sex life in the traditional sense is going to be difficult to come to terms with. I'm now on my local NHS waiting list to see a sex therapist at the end of February to discuss the options open to me.

Whilst things are getting slowly better, I still have frequent periods of low mood and I'm not as confident as I was before my prostate cancer diagnosis. I return to work shortly and to be honest that is something I'm not looking forward to.

Anyway, that's my latest honest update on my progress so far and how I mentally feel.

User

Posted 18 Jan 2020 at 19:30

You will never get a zero result as some PSA is produced elsewhere in the body; even women have tiny amounts of PSA. Anything less than 0.1 is considered to be acceptable.

You will be in remission when you have 5 years of PSA results at less than 0.1.

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

User

Posted 18 Jan 2020 at 22:45

Rick,
Reading back through your posts, I think you might really benefit from going to a local prostate cancer support group, if you have one nearby. You can talk easily to other men with the same issues. There's a search facility for local support groups here: Find local support
or if you say roughly where you live, someone may comment on nearby groups.

You are clearly concerned about ED, as indeed most men are at this stage. ED is completely expected so soon after the operation anyway, but I couldn't see if you had nerve sparing surgery or not. Since you're on a PDE5 inhibitor (I'm guessing is Tadalafil), that would suggest you did have nerve sparing surgery, as it's not given in the case of non-nerve sparing surgery.

User

Posted 28 Jan 2020 at 16:53

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

User

Posted 28 Jan 2020 at 17:09

If life gives you lemons , then make lemonade

User

Posted 30 Jan 2020 at 13:27

Hi Chris J & co,

User

Posted 02 Feb 2020 at 14:32

Rick,

I think you’ll learn to cope with the ups and downs because they are the new normal. I’m certainly still like that, and I’m still a newbie at 8 months post-op. I still get days when I’m down and don’t really understand why. You have many things to be positive for and so try to think of those last thing at night and first thing in the morning (I do this, giving thanks for the cancer having been cut out and apparently gone). Well done for getting stuff for ED. My NHS trust doesn’t want to know and my otherwise excellent GP wouldn’t do anything until the consultant had ruled on it, don’t know if that affects local budgets?

When you’re down give the Prostate Cancer UK nurses a ring, they are excellent, I can’t speak highly enough of the help they’ve given me.

I think I’m 99.9% there with incontinence, just the occasional leak when twisting, turning or stretching. 0% there with ED, but it always was number 3 on my list after life and incontinence!

Going back to work might be good, it will certainly give you something else to think about. But I fully understand the “but you look well “ response, it winds me up too and don’t get me started on the NHS and prostate cancer tests.

Good luck and keep celebrating progress.

User

Posted 02 Feb 2020 at 14:33

Lynn, I didn’t know that about 5 years being the cut off for in remission. I thought that was where I was now!

User

Posted 02 Feb 2020 at 14:55

Remission in my mind is when you no longer receive treatment and can just be monitored.

User

Posted 02 Feb 2020 at 15:13

Originally Posted by: Online Community Member

Lynn, I didn’t know that about 5 years being the cut off for in remission. I thought that was where I was now!

For prostate cancer, the accepted time frames are 5 years without biochemical recurrence (remission) and 10 years without biochemical recurrence (full remission) - biochemical recurrence after surgery is a PSA of 0.2 or higher or three successive rises above 0.1 and for RT / brachy the threshold is 2.0 + nadir.

Taken from the Cancer Research UK website:

Living with uncertainty

It can be very difficult to live with the fact that your cancer may come back. Even if doctors tell you that they are 95% certain your cancer has gone for good, you may find it very upsetting that no one can say for sure that you're cured.

Some people find that they can't stop thinking about it even after the end of their treatment. You may feel a little frightened of planning anything in the future or you may feel sad or depressed.

For most people who are in this situation, each day lowers the risk of a recurrence. Most cancers that are going to come back will do so in the first 2 years or so after treatment. After 5 years, you are even less likely to get a recurrence. For some types of cancer, after 10 years your doctor may say that you are cured.

Unfortunately, some types of cancer can come back many years after they were first diagnosed. Some people find it very difficult to cope with this idea, but there are some things you can do to help.

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

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Living with uncertainty

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