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Devastated And Alone

User
Posted 29 Sep 2021 at 21:21

Devstated and alone.


It's very difficult & complicated for me to write this so please bear with me.


I'm 57 and I've recently had a PIRADS 4, Likert 3 MRI with PSA 7.66, PSA density 0.13 & 2 large lesions 20+ & 18 mm. I've had a "weak bladder" and poor flow (and I believe a PSA in the 4 region) for as long as I can remember and about a year ago had a PIRADS 2. 


A while after I had an acute period of urine retention, and when I did go a feeling as if I couldn't empty my bladder, or ejaculate completely. I was put on Tamsulosin, but the side-effects were detpressing so I stopped. To my surprise my problem had much improved - possibly even better than it had historically been (I have no abnormal urge to go and don't go at night).


Obviously I am terrified and have barely moved for 2 days. (I sleep on my sofa for reasons I will explain).
I will not have any treatment as there is no possible way I could cope with the aftermath and the side effects, so basically I know my life is probably over.


I have suffered bipolar disorder for many years with extremely poor social functioning. I have few if any friends, have never really had a relationship bar a few weeks' brief fling in the nineties which ended badly and rarely see or talk to anyone. The last time I attended a social event was probably 2018-19. I spend most Christmases and birthdays alone.


I am more or less completely alone as my only relatives in this country are my elderly mother, who is suffering terribly from severe brittle bones and is psychologically low, and a brother who I have been largely estranged from sine the early noughties. I have not told her about my scan and dread telling her if the worst comes to pass as it will destroy her.


The only people who know are a friend of my mother's two of her sisters abroad who I have only met a few times and a friend I never see who has not responded to my text. None of them are on the end of a phone I have not communicated with any of them to any detail.


At the best of times my situation is bleak and hopeless and I frequently contemplate suicide. I used to harm my slef and drink heavily but managed to stop a few years ago. Seeing the state my mother has been in I have said to myself that I will try not to do anything until she is gone (something that also terrifies me). In fact I have often beseeched God to let me not wake up, which has me half-thinking I've invoked Karma.


After 20-something years I was discharged by the mental health team at the hospital a couple of years ago. There was no change in my general situation but as I understand it form other professionals who I see they were under great pressure to discharge people due to funding (they deal with Grenfell Tower so that may be an issue). Ironically losing their support was a constant fear, but my care-coordinator always reassured me they understood my situation and that would never happen. Unfortunately he left.


I basically only see an outreach worker at a private company contracted by the NHS. I had a good relationship with the former person - although I only had phone contact until recently due to restrictions - but they left recently. I am seeing the new person for the first time on Friday, but I obviously don't know how I will get on with her.
Since I was discharged I have not been able to function at all normally. My flat has deteriorated to a phenomenal degree, exacerbated by hoarding, which has left me overwhelmed. I literally can barely get into my bedroom and most of the flat is difficult to negotiate for junk and mess.


I started sleeping on the floor, but then got bedbugs which was hugely distressing  - I ended up trying to sleep in a bath full of water and sealing up the bathroom.


I seem to have got rid of them after getting some expensive stuff from the US. I couldn't allow my council landlords to arrange pest control as I would have been in serious trouble and the junk would have made it impossible to treat.


I have had no sign of them since the beginning of the year, but I am still too nervous to sleep on the floor so sleep or nap on the sofa. I am 6'2 so this is not ideal.


I often eat nothing but toast and jam or cheese spread and find it difficult to even have a bath.


I suffered 20 years of at times extreme Anti-social behavior in my estate - rowdy loitering youths/men trespassing on my steps until 2 or 3 in the morning and extraordinarily loud music which drove me to the brink sometimes. It's better now, touch wood, but there are still problems and as a result I rarely feel confident or relaxed here . Moving is hopeless - I tried for years.


I do very little bar try and watch TV, mess about on my devices and instruments. I used to walk long distances but rarely do so since I was discharged.


The point is that my living circumstances are so unconducive to major surgery, I have so little to live for and so little joy in life anyway that I could not cope with an even more serious deterioration in my circumstances, especially when there is  real prospect of future hard blows to come - I am terrified of my mother leaving me 100% alone, losing my benefits and serious consequences if the landlords see my flat.


It's embarrassing to admit, but although I have no sexual relationships & little prospect of one I have a high libido when not very depressed like now and "self=pleasure" is one of my few joys in life.


As a consequence I cannot undergo any invasive treatment. I know people will try to reassure me there is always something worth living for but unfirtunately that isn't always true for everyone. I would genuinely prefer to  try and pluck up the courage to end things when the serious damage begins. 


Apologies for the rant and if this brings anyone down - I have actually not mentioned some of the bad stuff that has led me to this position.


Since I had the bombshell I have dealt with it alone  - I have probably spent thirty hours on the internet researching. Nothing has really made me hopeful, even the stories here that are ostensibly hopeful terrify me. I guess this is the only way I could get things off my chest to any degree.

User
Posted 30 Sep 2021 at 09:27

Drabman,

I can tell that was very difficult to write, and you need to be commended for managing to do so and being so honest/open.

First things first, if you are feeling suicidal, down, or very lonely, Samaritan's is just a phone call away:
116 123
Do make use of them.

You should also talk with your GP - he can refer you back to mental health services, and may be able to engage other services or local charities to help you.

Would it be useful to have someone call you once a day or once a week for a chat? This is a service NHS volunteer responders provide, where volunteers call people for a chat. These are not trained counselors so they won't be able to help with specific mental or physical health issues, they are people who like to help by chatting to someone who's lonely. It will be a different person calling you each time.

With the hoarding and living conditions, would you like this to be different? If so, I think help could be available to get your living conditions sorted out. This might be through your council and social services, or might alternatively be via a local charity. I would hope your council would help someone who has significant mental and physical illness. Is there some reason you are worried about contacting the council from past experience? Is your landlord the council, or a private landlord?

There may be a local prostate cancer support group which can help you with understanding this, better than searching on Google. In my local group, we recently helped someone through their treatment in not a massively different situation from you. He would never have been comfortable coming to support group meetings, but we helped him with getting to/from appointments, understanding what was happening at each stage as far as he wanted to, being there to talk, and engaging appropriate medical support when necessary. He's now through and out the other side.

You might also be able to get help from a local bipolar support group, and meet people who understand your condition. It looks like there's a network of them here:
https://www.bipolaruk.org/pages/events/category/online-support-groups-parent-category

Your concern about sexual function is very normal, and it's one of the things you factor in to your choice of treatment. It doesn't sound like you've finished the diagnosis process yet though, so probably too early to be thinking about treatment yet. You are at the most anxious point in the process - it does start to get better when you have your full diagnosis and you decide which direction to take from there. There are options other than major surgery.

It might be useful to know roughly where you live (e.g. town), as people in that area may be able to identify local help available to you.

Please do keep the conversation here going.

User
Posted 30 Sep 2021 at 23:41

Hi d***man, 

I decided not to use your chosen handle, you deserve a better name than that. In fact I'm going to call you TopMan instead. So put that in your pipe and smoke it.

As you can see from all the other posts we are a friendly bunch. And some of us such as Andy and Lyn (and all the others who have posted so far) can give really useful advice. You really don't have to apologise for posts which you think might drag us down with negativity, this is a support group for people with cancer, if we couldn't handle the odd bit of bad news we wouldn't be here.

There are probably 100 or so active members on the forum. Post your thoughts whatever they are anytime of the day or night, just being able to write stuff down and know someone is listening to you can be a great help. You say you have no friends well the moment you pressed send on that first post you acquired about 100 new ones.

As for your cancer, as Lyn says it's probably best go through the diagnostic process, otherwise you may be worrying over nothing. Should you need treatment, well that is tricky. As you can see from this forum it has its risks, but a forum like this is likely to have more people who have problems on it, the people without problems are doing more interesting things like queuing for petrol. 

It is a shame that your text friend hasn't answered but it is true that some people find talking about cancer awkward, but that is not a problem you will have on this group. 

Good luck keep posting. 

 

Dave

User
Posted 30 Sep 2021 at 11:00
I read the O.P.’s post with some discomfort, and didn’t feel qualified to comment as he is clearly in need of some help, as well as that from Urology.

Thank you for your suggestions, and I hope he takes them to heart, and realises that all is not lost!

Best wishes and good luck, Drabman.

Cheers, John.

User
Posted 01 Oct 2021 at 16:58

Who, How and when to tell someone about your cancer is different for different people. I have a policy in life of being very open, but I don't like to cause unnecessary worry to others and I feel uncomfortable when people are offering me sympathy. When I had problems peeing and started having a few doctors appointments I did mention it casually to my mom, I wasn't really thinking I had cancer so it wasn't a big deal mentioning the matter. I had a cycling holiday with one of my friends planned for the summer and we were getting to the booking tickets phase, so I had to mention to him that I might have a problem. I certainly wasn't keen on saying anything at that time and feel I was crying wolf if nothing was found.

Anyway I went through all the tests and was diagnosed. Some of the people I know are gossips and once they know something everyone will know, so I made sure to tell them first, and tell them there was no secret about this so basically next time I was out with this social circle, everyone knew and no one felt they had to keep quiet in case X didn't know. When people sympathetically asked how I was, I would reply, "I'm fine, but every time I go to hospital the doctors have a bet on the largest piece of medical equipment they can find and shove up me a*s*" so people soon got the message there was no point in tiptoeing around the subject.

In hindsight I am very happy with the way I handled telling people. The only think I would change is I would not have told my mom until I had a more certain diagnosis, it was just something which came out in conversation when I did not think it was serious and though she doesn't have any great problem with worry, if it had all come to nothing she would have been worrying over nothing. As it happens it did turn out to be cancer, and maybe it is just as well that she was kept in the loop, rather than getting my diagnosis presented as a fait accompli, but on balance it would have been better to have waited.  

Waiting for appointments is a fact of life with the NHS they will get there eventually. 

Don't think that because my posts are up beat, I am a a happy extrovert person, I am a total introvert (but I am happy). I am probably not too dissimilar to yourself. I put any success I have had to good luck and nothing to hard work on my part. As I occasionally post on this site, I consider myself to be lucky to be born in a country with a life expectancy of 85 rather than 48, that wasn't hard work that was luck. I am also fairly intelligent but again that was luck and genetics, not my doing. Because I think so much of our lives are down to luck, I do do not look up to my "betters", they almost certainly got there by being lucky enough to be born to lucky parents, and I don't look down on anyone, because they just had bad luck in life which could so easily have happened to anybody.

Society isn't very kind to introverts, I guess that was a bit of bad luck I had, being born one of them. I think I have developed a coping strategy for that I just try and ignore the "rules" which us introverts follow. So I have all the advantages of being an introvert, lets face it lockdown wasn't a problem for us introverts, and now I can enjoy some of the benefits extroverts get, by just ignoring my natural introversion when it is getting in the way of me enjoying life (I'm not saying this is easy and my infiltration of the extroverts' citadel is far from complete).

 

Dave

User
Posted 07 Oct 2021 at 23:07
I think the statistic for people experiencing depression after being told they have any kind of cancer (not just prostate cancer) is quite high, particularly after treatment is finished - Macmillan have an area of their website devoted to this.

At the moment you don't know that you have cancer, you certainly don't know whether you will be recommended to have treatment or what that treatment might be. Once you get to that stage, if you decide not to have surgery or brachy or whatever, that will be your right. But at the moment you are tormenting yourself with unknown horrors. You certainly have an unnecessarily negative understaning of the risks - that's the problem with forums ... people who had treatment and then had no side effects and got on with their lives tend not to need to hang around a cancer patient forum.

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

User
Posted 08 Oct 2021 at 15:14
You talk of the formidable attitude of men on this forum and it is from mutual support and becoming more aware about PCa that we gain knowledge and strength. But the majority here are either struggling with treatment or concern about what may come next. You don't read much here from the many men who have successfully had treatment, most without a support forum and have just been able to get on with their lives being cautiously optimistic that either PCa will no longer be a problem for them or if further treatment is needed they will deal with it. Statistically, far more men die of something else than their PCa. Appreciate that you have to deal with additional problems, so things are likely to be more difficult for you and as previously suggested support beyond that given for those with PCa may well help.

If there are any questions you have about PCa we will do our best to help answer these through our accumulated experience, although not being doctors individual diagnosis and treatment options are for the patient's medical consultants to advise on. Having said that, patients are often given treatment options and it is here that it can be useful to tap into the experience of members.

Barry
User
Posted 30 Sep 2021 at 10:02

I note that Andy 62 has already offered some sound advice so will not respond by covering  some of the things he has already mentioned.

 

Since you advised that you have already undertaken a deal of research then you are probably aware that many men of you age have the signs that they have prostate cancer. In fact, evidence suggests that 1 in 5 men (2 in 5 men per US research) aged 40 have it, most men of 60 ( a percentage of 60% is often cited) have it and all men of 80. I was diagnosed in June this year with a PSA reading of 5.76 (in September it had gone up to 6.01). My lesion is 15mm X 8 mm and my prostate was deemed to be 55 cc in size- giving  rise to a PSA density of around 11%. So, my readings are not too dissimilar to yours. By the way, the size of the lesion  does not mean that is the size of any cancer that may be present; it is just an area that has shown up on the scan that is worth checking out.

A PIRADS 4 reading, the same as mine, which is based on your scan, suggests that cancer is likely to be present, but that  cannot be confirmed until a biopsy is undertaken. So that would ordinarily be the next step- a biopsy, which from my experience after having 2 (one in June and one a few weeks ago), is nothing like as bad as it sounds. In fact, mine were text book stuff and caused me no problems or issues at all. 

After a period of active surveillance,  I am now considering what treatment options are best for me and because of my readings, which are not too dissimilar to yours, I have been told by the consultant assigned to my case, that any treatment I have should result in the disease being cured. 

Since being notified of my cancer, I have come across  3 men in my small village of 300 who have had prostate cancer  and who are alive many years after being treated- one is still alive 23 years afterwards and he is now 81. I have also found out that a couple of my ex-workmates have had it and are doing fine. So, prostate cancer is for the majority of people an inconvenience rather than a death sentence.

Finally, it is worth checking out on Google the number of well known actors, comedians, celebs who have had the disease. The numbers are quite high and some of the names are very high profile.

Edited by member 30 Sep 2021 at 11:10  | Reason: Not specified

User
Posted 30 Sep 2021 at 16:36

Clearly, judging from your original message and the latest one, you are an intelligent guy and I would certainly suggest you take up Andy's offer of support. What have you to lose by doing so?

 

Re your Autistic comment, my son, who is highly intelligent, suffers from a mild form of autism, and like you finds it very difficult to interact with people. He has got better over the years and, fortunately, works in the IT industry where being a "nerd" is part and parcel of the job.

 

As I previously mentioned, prostate cancer if caught early enough (and based on your initial readings that does appear to be the case) is "curable" and if, after a biopsy (which causes no problems), cancer is found then there are a range of treatments available- including Active Surveillance (which I have been on). It is true that apart from A.S. there are side effects in having treatment, but they are different for each type of treatment and, thus, you can choose which one is best for your particular circumstances.

User
Posted 30 Sep 2021 at 17:12
Prostate cancer treatment isn't too awful. Lots of men who live alone get through it absolutely fine. I did.

Best wishes,

Chris

User
Posted 30 Sep 2021 at 17:36
I think try to put your worries about eviction out of your head. Based on what you have said here, you clearly fall into the realms of a vulnerable adult (now called an adult at risk) and the local council has a statutory duty to safeguard you from abuse, including self-neglect and hoarding. They cannot intervene in your life without your agreement (unless you have no capacity to make your own decisions and it seems to me that you do have capacity) but nor can they do anything that would make you more vulnerable, like making you homeless.

I get what you are saying about how hard it is to reach out but do keep in mind that you can ring the PCUK nurses (number at the top of this web page) and you will get a much better response than from ageing aunties. They can also put you in touch with another man who has been in your situation if you want, but they won't press it on you.

As for the next steps, have the biopsy. If you don't, you could spend the rest of your life fearful of a cancer that it turns out you don't have. If you are diagnosed, no one is going to force you to have treatment.

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

User
Posted 30 Sep 2021 at 17:55
I got really stressed about my cancer treatment (and other stuff that scans found), and was helped enormously by Macmillan's counselling service. It's completely free and they are absolutely brilliant.

Best wishes,

Chris

User
Posted 01 Oct 2021 at 15:27

Dave, your post brought a tear to my eye.

My friend did finally contact me yesterday, but ironically I couldn't face replying. I know he was only doing so out of a sense of obligation and maybe his partner prompting him and it would have been impossibly awkward. As I say I rarely see him and we really only have superficial text conversations on an occasional basis. When we used to be in contact I don't think I ever had a conversation about the way I was feeling.

We used to be flatmates 25 years ago and there were occasions I cut myself that were never acknowledged or discussed. On one occasion I was found drunk in distress, walking around barefoot and bleeding after slashing myself . An ambulance was called to the house after someone took me back and I don't think even that was mentioned after.

I've received the biopsy appointment, but to my horror it is not until the 19th. I was told within two weeks of my results which was last Monday and even that wait was torture. I was starting to feel marginally better as I expected the wait would be over soon, but God knows how long the final outcome will be now.

It was fortunate in a way that my mother has stopped checking on me as she cannot cope with my normal level of distress and bad news in her current state. I felt I could hold off telling her until I knew something. However with the extended wait that appears to be the current situation I don't know how this will be possible. According to my aunts she wants to visit soon and I cannot see how I will be able to keep this from her. I feel like I would break down in front of her.

User
Posted 01 Oct 2021 at 17:06

Reaching out to you and sending strength your way.

User
Posted 07 Oct 2021 at 22:04

Also just to add another case for optimism, I went for radiotherapy (half dose of external beam, half dose of HDR brachytherapy) and the hormone therapy which comes with it. RT was 26 months ago and HT finished 9 months ago. Over last couple of weeks, I've been waking at night and in the morning with erections, so I'm pretty sure my testosterone is returning (I'll know for sure in a couple of weeks when my next PSA/testosterone test is due). I don't yet have libido back (although that could be because I'm very busy with other things.) I can have a successful wank, but I've been able to do that all throughout treatment, although with no libido, it's difficult to be bothered. So I'm optimistic that sex will be back to normal, probably with dry orgasms (which they are now, although the HT does that temporarily anyway). You can lose erections over time as a result of radiotherapy, but it's less likely than with a prostatectomy. I was speaking with the leading authority on RT and HT impacting erections (because I cover it in a class I often give), and if it's going to happen, you will start to see the effect within 2 years of the RT - I'm just past that so I'm keeping my fingers crossed.

Of course, many men who don't have prostate cancer and treatments lose their erections as they get older for many other reasons, and none of us is immune to that. Apparently, 50% of 50 year olds are starting to get some ED. Unexpected loss of erections should always be investigated because it can be an early warning sign of several serious diseases which are still treatable at that point. Many men in hospital with their first heart attack report that they started having erection issues up to 3 years before. It's also the route by which many diabetic men are diagnosed.

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User
Posted 30 Sep 2021 at 09:27

Drabman,

I can tell that was very difficult to write, and you need to be commended for managing to do so and being so honest/open.

First things first, if you are feeling suicidal, down, or very lonely, Samaritan's is just a phone call away:
116 123
Do make use of them.

You should also talk with your GP - he can refer you back to mental health services, and may be able to engage other services or local charities to help you.

Would it be useful to have someone call you once a day or once a week for a chat? This is a service NHS volunteer responders provide, where volunteers call people for a chat. These are not trained counselors so they won't be able to help with specific mental or physical health issues, they are people who like to help by chatting to someone who's lonely. It will be a different person calling you each time.

With the hoarding and living conditions, would you like this to be different? If so, I think help could be available to get your living conditions sorted out. This might be through your council and social services, or might alternatively be via a local charity. I would hope your council would help someone who has significant mental and physical illness. Is there some reason you are worried about contacting the council from past experience? Is your landlord the council, or a private landlord?

There may be a local prostate cancer support group which can help you with understanding this, better than searching on Google. In my local group, we recently helped someone through their treatment in not a massively different situation from you. He would never have been comfortable coming to support group meetings, but we helped him with getting to/from appointments, understanding what was happening at each stage as far as he wanted to, being there to talk, and engaging appropriate medical support when necessary. He's now through and out the other side.

You might also be able to get help from a local bipolar support group, and meet people who understand your condition. It looks like there's a network of them here:
https://www.bipolaruk.org/pages/events/category/online-support-groups-parent-category

Your concern about sexual function is very normal, and it's one of the things you factor in to your choice of treatment. It doesn't sound like you've finished the diagnosis process yet though, so probably too early to be thinking about treatment yet. You are at the most anxious point in the process - it does start to get better when you have your full diagnosis and you decide which direction to take from there. There are options other than major surgery.

It might be useful to know roughly where you live (e.g. town), as people in that area may be able to identify local help available to you.

Please do keep the conversation here going.

User
Posted 30 Sep 2021 at 10:02

I note that Andy 62 has already offered some sound advice so will not respond by covering  some of the things he has already mentioned.

 

Since you advised that you have already undertaken a deal of research then you are probably aware that many men of you age have the signs that they have prostate cancer. In fact, evidence suggests that 1 in 5 men (2 in 5 men per US research) aged 40 have it, most men of 60 ( a percentage of 60% is often cited) have it and all men of 80. I was diagnosed in June this year with a PSA reading of 5.76 (in September it had gone up to 6.01). My lesion is 15mm X 8 mm and my prostate was deemed to be 55 cc in size- giving  rise to a PSA density of around 11%. So, my readings are not too dissimilar to yours. By the way, the size of the lesion  does not mean that is the size of any cancer that may be present; it is just an area that has shown up on the scan that is worth checking out.

A PIRADS 4 reading, the same as mine, which is based on your scan, suggests that cancer is likely to be present, but that  cannot be confirmed until a biopsy is undertaken. So that would ordinarily be the next step- a biopsy, which from my experience after having 2 (one in June and one a few weeks ago), is nothing like as bad as it sounds. In fact, mine were text book stuff and caused me no problems or issues at all. 

After a period of active surveillance,  I am now considering what treatment options are best for me and because of my readings, which are not too dissimilar to yours, I have been told by the consultant assigned to my case, that any treatment I have should result in the disease being cured. 

Since being notified of my cancer, I have come across  3 men in my small village of 300 who have had prostate cancer  and who are alive many years after being treated- one is still alive 23 years afterwards and he is now 81. I have also found out that a couple of my ex-workmates have had it and are doing fine. So, prostate cancer is for the majority of people an inconvenience rather than a death sentence.

Finally, it is worth checking out on Google the number of well known actors, comedians, celebs who have had the disease. The numbers are quite high and some of the names are very high profile.

Edited by member 30 Sep 2021 at 11:10  | Reason: Not specified

User
Posted 30 Sep 2021 at 11:00
I read the O.P.’s post with some discomfort, and didn’t feel qualified to comment as he is clearly in need of some help, as well as that from Urology.

Thank you for your suggestions, and I hope he takes them to heart, and realises that all is not lost!

Best wishes and good luck, Drabman.

Cheers, John.

User
Posted 30 Sep 2021 at 13:40
I commend the suggestions made by Andy and feel you really do need some professional help and some personal interaction with people who understand and accept your situation. I do hope with such support you can come round to believing that life for you is or could be worthwhile. You don't say what interests you have but U3A groups have a range of activities, some of which were shut down due to Covid and are now opening up again. Maybe you could join one of their walking groups. Many of these walkers end up in a pub so you could get to know people that way or participate in other activities as you become more confident. The essential thing here is that you must be willing to accept help and become motivated. It is also important that you eat and drink properly and are able to get enough quality sleep. Hopefully, again with some help you will be able to go through your hoardings and reduce these to a more manageable level. It will take time to make changes but I hope you will be able to do so and meanwhile get appropriate treatment for your PCa.
Barry
User
Posted 30 Sep 2021 at 15:40

Thank you so much for your replies.

I'm so sorry if I've made anyone uncomfortable, that wasn't my intention. I just had no other outlet bar the aunts living abroad who I barely know. They've been great, but its essentially a couple of emails here and there and I'm aware I'm causing them anguish - largely because they know what this will do to my mother.

The only person I have very occasional text contact with has not responded. I contacted his partner and my impression is that he is too scared. My mother is the only other person who I could have contacted but she deals with emotional issues very badly - the lack of talking in our family has been a source of conflict between her and my brother and I. I also know that with the severe problems she has this is going to destroy her and that is beyond distressing.

Unfortunately I've never been able to actively reach out to people so that is not really an option. Even on occasions when I was in severe crisis I always waited and relied on my regular mental health hospital appointments to arrive to let people see what sort of state I was in, or my mother contacting someone (I spent a lot of time at her home due to the anstisocial behaviour) or casualty contacting someone when I harmed myself and required stitches.This is why being discharged was such a catastrophe.

Mental Health services deteriorated dramatically here in the decades I was a patient. It went from being a place where looked after to a point where I dreaded seeing some of the people I was allocated and only really went because I realised I would need support with my benefits at some point. Being referred back is something that I find a little stressful - and I don't see what they could really do anyway.

Andy has been extraordinarily kind and contacted me offering support, but it's just always been extraordinarily difficult for me to take that step. (I'm in North Kensington by the way , hence the reference to mental health discharging a lot of people like me after Grenfell).

As I mentioned my social functioning and ease around people has always been very poor. Part of it may be due to the fact tht I'm significantly hearing impaired, but until Covid hit I was waiting assessment to see if I was on the Autistic/Aspergers scale.

I have had some interests but they are intermittent as often I can't face anything.

I'm even questioning the wisdom of going through with the biopsy as it's already torture and as I couldn't face any treatment that would lead to sexual, urinary or bowel side effects I'm wondering why put myself through the agony of another wait for results. As I said my quality of life is already so poor that treatment would make it beyond unbearable.

I'm sorry for the horrible negativity. I've just never been cut out for life I suppose. In a world of billions some will inevitably be hopeless cases. I can't recall any point in my life even as a small child, where the best state of mind I could achieve was to hope that somehow things wouldn't be so bad in future.

I genuinely wish I'd never agreed to the MRI.

User
Posted 30 Sep 2021 at 16:36

Clearly, judging from your original message and the latest one, you are an intelligent guy and I would certainly suggest you take up Andy's offer of support. What have you to lose by doing so?

 

Re your Autistic comment, my son, who is highly intelligent, suffers from a mild form of autism, and like you finds it very difficult to interact with people. He has got better over the years and, fortunately, works in the IT industry where being a "nerd" is part and parcel of the job.

 

As I previously mentioned, prostate cancer if caught early enough (and based on your initial readings that does appear to be the case) is "curable" and if, after a biopsy (which causes no problems), cancer is found then there are a range of treatments available- including Active Surveillance (which I have been on). It is true that apart from A.S. there are side effects in having treatment, but they are different for each type of treatment and, thus, you can choose which one is best for your particular circumstances.

User
Posted 30 Sep 2021 at 17:12
Prostate cancer treatment isn't too awful. Lots of men who live alone get through it absolutely fine. I did.

Best wishes,

Chris

User
Posted 30 Sep 2021 at 17:33

Thanks so much again.

Unfortunately I know for certain I simply could not cope with the side effects - especially if I was one of the unlucky ones who suffer poor outcomes.

I don't just live alone, I am almost completely alone in every way and have been for a long time. The stress of my living conditions is often very hard to deal with - not just the state of the flat but the inability to completely relax and the state of hypervigilance I am often in caused by two decades of anti-social behaviour.

Even though it seems to have subsided somewhat I still always have to brace myself and flinch as I enter my street on returning home. I am always worried about being bedridden even with a mild illness as I wouldn't have the ability to leave the flat and walk around for hours to escape if the trouble begins. It isn't the environment to go through serious life-changing treatment that is stressful in itself.

Among amny toher things I am long overdue for a feared DLA/PIP migration. Reassessments always cause me immense distress and if that were to happen in the middle of the aftermath of treatment it would be horrendous beyond belief.

I was essentially jammed up in every way and exhausting my brain frantically trying to think of a way out before this. Life was only bearable in very limited doses, if I did as little as possible - now it seems completely impossible.

 

User
Posted 30 Sep 2021 at 17:36
I think try to put your worries about eviction out of your head. Based on what you have said here, you clearly fall into the realms of a vulnerable adult (now called an adult at risk) and the local council has a statutory duty to safeguard you from abuse, including self-neglect and hoarding. They cannot intervene in your life without your agreement (unless you have no capacity to make your own decisions and it seems to me that you do have capacity) but nor can they do anything that would make you more vulnerable, like making you homeless.

I get what you are saying about how hard it is to reach out but do keep in mind that you can ring the PCUK nurses (number at the top of this web page) and you will get a much better response than from ageing aunties. They can also put you in touch with another man who has been in your situation if you want, but they won't press it on you.

As for the next steps, have the biopsy. If you don't, you could spend the rest of your life fearful of a cancer that it turns out you don't have. If you are diagnosed, no one is going to force you to have treatment.

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

User
Posted 30 Sep 2021 at 17:55
I got really stressed about my cancer treatment (and other stuff that scans found), and was helped enormously by Macmillan's counselling service. It's completely free and they are absolutely brilliant.

Best wishes,

Chris

User
Posted 30 Sep 2021 at 23:41

Hi d***man, 

I decided not to use your chosen handle, you deserve a better name than that. In fact I'm going to call you TopMan instead. So put that in your pipe and smoke it.

As you can see from all the other posts we are a friendly bunch. And some of us such as Andy and Lyn (and all the others who have posted so far) can give really useful advice. You really don't have to apologise for posts which you think might drag us down with negativity, this is a support group for people with cancer, if we couldn't handle the odd bit of bad news we wouldn't be here.

There are probably 100 or so active members on the forum. Post your thoughts whatever they are anytime of the day or night, just being able to write stuff down and know someone is listening to you can be a great help. You say you have no friends well the moment you pressed send on that first post you acquired about 100 new ones.

As for your cancer, as Lyn says it's probably best go through the diagnostic process, otherwise you may be worrying over nothing. Should you need treatment, well that is tricky. As you can see from this forum it has its risks, but a forum like this is likely to have more people who have problems on it, the people without problems are doing more interesting things like queuing for petrol. 

It is a shame that your text friend hasn't answered but it is true that some people find talking about cancer awkward, but that is not a problem you will have on this group. 

Good luck keep posting. 

 

Dave

User
Posted 01 Oct 2021 at 15:27

Dave, your post brought a tear to my eye.

My friend did finally contact me yesterday, but ironically I couldn't face replying. I know he was only doing so out of a sense of obligation and maybe his partner prompting him and it would have been impossibly awkward. As I say I rarely see him and we really only have superficial text conversations on an occasional basis. When we used to be in contact I don't think I ever had a conversation about the way I was feeling.

We used to be flatmates 25 years ago and there were occasions I cut myself that were never acknowledged or discussed. On one occasion I was found drunk in distress, walking around barefoot and bleeding after slashing myself . An ambulance was called to the house after someone took me back and I don't think even that was mentioned after.

I've received the biopsy appointment, but to my horror it is not until the 19th. I was told within two weeks of my results which was last Monday and even that wait was torture. I was starting to feel marginally better as I expected the wait would be over soon, but God knows how long the final outcome will be now.

It was fortunate in a way that my mother has stopped checking on me as she cannot cope with my normal level of distress and bad news in her current state. I felt I could hold off telling her until I knew something. However with the extended wait that appears to be the current situation I don't know how this will be possible. According to my aunts she wants to visit soon and I cannot see how I will be able to keep this from her. I feel like I would break down in front of her.

User
Posted 01 Oct 2021 at 16:58

Who, How and when to tell someone about your cancer is different for different people. I have a policy in life of being very open, but I don't like to cause unnecessary worry to others and I feel uncomfortable when people are offering me sympathy. When I had problems peeing and started having a few doctors appointments I did mention it casually to my mom, I wasn't really thinking I had cancer so it wasn't a big deal mentioning the matter. I had a cycling holiday with one of my friends planned for the summer and we were getting to the booking tickets phase, so I had to mention to him that I might have a problem. I certainly wasn't keen on saying anything at that time and feel I was crying wolf if nothing was found.

Anyway I went through all the tests and was diagnosed. Some of the people I know are gossips and once they know something everyone will know, so I made sure to tell them first, and tell them there was no secret about this so basically next time I was out with this social circle, everyone knew and no one felt they had to keep quiet in case X didn't know. When people sympathetically asked how I was, I would reply, "I'm fine, but every time I go to hospital the doctors have a bet on the largest piece of medical equipment they can find and shove up me a*s*" so people soon got the message there was no point in tiptoeing around the subject.

In hindsight I am very happy with the way I handled telling people. The only think I would change is I would not have told my mom until I had a more certain diagnosis, it was just something which came out in conversation when I did not think it was serious and though she doesn't have any great problem with worry, if it had all come to nothing she would have been worrying over nothing. As it happens it did turn out to be cancer, and maybe it is just as well that she was kept in the loop, rather than getting my diagnosis presented as a fait accompli, but on balance it would have been better to have waited.  

Waiting for appointments is a fact of life with the NHS they will get there eventually. 

Don't think that because my posts are up beat, I am a a happy extrovert person, I am a total introvert (but I am happy). I am probably not too dissimilar to yourself. I put any success I have had to good luck and nothing to hard work on my part. As I occasionally post on this site, I consider myself to be lucky to be born in a country with a life expectancy of 85 rather than 48, that wasn't hard work that was luck. I am also fairly intelligent but again that was luck and genetics, not my doing. Because I think so much of our lives are down to luck, I do do not look up to my "betters", they almost certainly got there by being lucky enough to be born to lucky parents, and I don't look down on anyone, because they just had bad luck in life which could so easily have happened to anybody.

Society isn't very kind to introverts, I guess that was a bit of bad luck I had, being born one of them. I think I have developed a coping strategy for that I just try and ignore the "rules" which us introverts follow. So I have all the advantages of being an introvert, lets face it lockdown wasn't a problem for us introverts, and now I can enjoy some of the benefits extroverts get, by just ignoring my natural introversion when it is getting in the way of me enjoying life (I'm not saying this is easy and my infiltration of the extroverts' citadel is far from complete).

 

Dave

User
Posted 01 Oct 2021 at 17:06

Reaching out to you and sending strength your way.

User
Posted 01 Oct 2021 at 19:14
You don't really have anything to tell your mum at this point, except that you are waiting for some tests and you are really anxious about it.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 07 Oct 2021 at 18:45

Thanks for all the replies.

Apologies for not responding earlier, but my head was spinning so much I had to try and stop looking at the internet - I have a problem with obsessive behaviour at the best of times and I felt it wasn't helping.

I met my new Outreach worker - fortunately she seemed very easy to get on with. She said she wanted to see me twice a week due to my distressed state, but for some reason I haven't heard from her since. I also wrote a note to my GP in an attempt to explain the situation. In fact I printed off this thread as I couldn't face going over it in detail.

My mother called at the weekend, which was horrendously stressful. Her demeanour was nice, upbeat and loving which made it much worse - she said she was going to visit soon if the Dr confirmed the state of her fractured spine didn't prevent her travelling (I think I mentioned she has severe brittle-bone disease). 

I had to try and remain upbeat while desperately trying to put her off. At that time I thought my biopsy wasn't scheduled for a few weeks so I was wondering how I was going to deter her for maybe nearly two months, when she hasn't seen me for two years and is desperate either to come to London, or to get me to visit. All I could think about was what she is inevitably about to go through to at least some degree because of my circumstances. When the call finished my T-shirt was wet with sweat.

Anyway my biopsy was brought forward because of my distress and I had it yesterday. The lead up to it and the pre-test was difficult - it seemed to make it more real somehow and I slept for probably two hours over the successive days of the pre-test and the biopsy. Ironically, while I was waiting to go into the hospital the GP called and tried to reassure me. although that didn't really work as he obviously mistakenly thought I'd be reassured to hear that that treatment might not be of the most radical kind.

The biopsy itself, while not exactly fun wasn't that bad. I suffered almost no after effects - no lingering pain and apart from a miniscule amount the first time, no blood in my urine. 

The staff were lovely and talkative but unfortunately that meant he consultant casually showed me the scan she took. I assume she thought I was aware I had a major problem and that the biopsy was just to find out how bad it is. and didn't realise I might have still had some hope.

The two lesions were huge - they must have been at least 2cm in volume each, probably a lot more. I had hoped that the large diameter referred to in the MRI could have meant the lesions were flat and therefore the volume wasn't large, however the opposite was true.

I didn't show it at the time, but I was obviously horrified. The edge was taken off a bit by the effect of the anaesthetic, so against advice I went for a four-five hour walk in an attempt to clear my head. I spoke to one of my aunts abroad via Skype for a long time on the way, which cost me about £20.

I don't get the full diagnosis for a few weeks - the wait is slightly extended. However it seems clear to me that any hope of a normal life (or what passes for one in my case) is gone. It's now just a question of whether they advise treatment now or some form of surveillance, which given my tendency to excessively worry is not ideal and at my age probably means treatment is just delayed a bit.

On my walk I found myself trying to prepare by suppressing all interest in the opposite sex - even swearing at myself if I saw someone I found attractive and reacted in my mind. If I deluded myself that the interest was reciprocated my heart sank. The bitter irony is that partly because of an abusive childhood and partly for other reasons (possible autistic spectrum etc) I have often felt repulsive, with my heart sinking at the belief that the opposite sex WASN'T interested in me.

While waiting for my biopsy I was already getting despondent at any mention of sexual matters I stumble across in the media even in jest and was unable to watch any charity appeals or adverts about cancer. It's taking me about two hours to watch a one hour programme, such is the lack of concentration and constant need to rewind because I realise five minutes have passed while I've been away with the fairies. It's incredible how many conflicting thoughts can revolve around a person's head. However I guess the most annoying thing is the human imperative to hope against hope.

I've had an obsessive bout of consulting Dr Google today, hence this reply, but there is no reassurance to be found so I have to try and stop before I go mad . As a consequence it might be a while before I reply as using the internet for anything other than emails will inevitably lead to another dispiriting spiral of googling for some elusive sliver of hope that things might turn out better then I expect, instead of the future being one of radical treatment or at best some form of surveillance with an endless series of tests, the associated apprehensiveness (which with my stupid brain is likely to be pervasive in the extreme) and the likelihood that treatment is simply delayed instead of permanently avoided.

Thanks again to everyone for their kindness.

Edited by member 07 Oct 2021 at 18:54  | Reason: Not specified

User
Posted 07 Oct 2021 at 19:32

Originally Posted by: Online Community Member

 

I don't get the full diagnosis for a few weeks - the wait is slightly extended. However it seems clear to me that any hope of a normal life (or what passes for one in my case) is gone. It's now just a question of whether they advise treatment now or some form of surveillance, which given my tendency to excessively worry is not ideal and at my age probably means treatment is just delayed a bit.



Don't be so pessimistic, for goodness sake - of course you can live a "normal life" after prostate cancer! I was diagnosed with prostate cancer in May 2018, had radiotherapy at the start of 2019, and live a happy and entirely normal life 🙂. Localised prostate cancer is an eminently treatable condition.

Just wait for the diagnostic process to grind its way to a conclusion (which generally takes a couple of months) and then you'll know where you stand. You WILL get through it, and you WILL have a normal life after it.

All the best,

Chris

 

User
Posted 07 Oct 2021 at 19:57

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

 

I don't get the full diagnosis for a few weeks - the wait is slightly extended. However it seems clear to me that any hope of a normal life (or what passes for one in my case) is gone. It's now just a question of whether they advise treatment now or some form of surveillance, which given my tendency to excessively worry is not ideal and at my age probably means treatment is just delayed a bit.



Don't be so pessimistic, for goodness sake - of course you can live a "normal life" after prostate cancer! I was diagnosed with prostate cancer in May 2018, had radiotherapy at the start of 2019, and live a happy and entirely normal life 🙂. Localised prostate cancer is an eminently treatable condition.

Just wait for the diagnostic process to grind its way to a conclusion (which generally takes a couple of months) and then you'll know where you stand. You WILL get through it, and you WILL have a normal life after it.

All the best,

Chris

 

 

Unfortunately there doesn't seem to be any hope of normal sexual function after treatment - that's partly what I meant by a normal life. And of course there is a high likelihood of some degree of incontinence.

User
Posted 07 Oct 2021 at 20:05

You are saying it like it is a certainty which it isn't. There are plenty of members on here who are perfectly continent and who have sex lives. You are only seeing the worst case scenarios

Edited by member 07 Oct 2021 at 20:06  | Reason: Not specified

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

User
Posted 07 Oct 2021 at 20:33

Originally Posted by: Online Community Member

Unfortunately there doesn't seem to be any hope of normal sexual function after treatment - that's partly what I meant by a normal life. And of course there is a high likelihood of some degree of incontinence.



If you opt for surgery, then there is a chance that the surgeon may not be able to preserve the nerve bundles that control erections, this is perfectly true, but in the majority of cases, nerves on at least one side are preserved, and you will be able to have erections after surgery. Incontinence? Again a small percentage of men have long-term incontinence; the majority do not. The majority outcome is continence and sexual function.

I had radiotherapy rather than surgery. No continence or erection problems. When I ejaculate only about half a teaspoon of clear fluid comes out, but ejaculations feel just as intense (if not more so) than they did before my treatment. 

Hope that's of some help to you?

All the best,

Chris

 

User
Posted 07 Oct 2021 at 21:53

It just seems to me there are a great many studies and personal testimony showing a high likelihood of significantly reduced quality of life after all treatments, especially surgery. For example,

https://www.bmj.com/content/371/bmj.m3503

I saw a different study showing depression is 4 times higher after prostate cancer treatment  than in the general population - God know what that means for people like me who already struggle to get out of that pit.

All treatments seem to leave a majority with at least one significant problem. Some people may not care about a particular issue for some reason - age or existing impotence or incontinence and/or may be able to adopt a positive attitude towards any degradation in normal functioning. For example, they may be grateful they can achieve any sort of erection, even if those erections are half the quality they were used to before, on the basis they are glad to be alive and something is better than nothing. However such an outcome would still represent a significant degradation in the quality of life for many men.

This forum seems to contain a majority of extremely strong, mentally well-adjusted people with admirably positive attitudes, but I do wonder if that is the norm. I read a few threads on an American forum a while ago where by contrast many posters were extremely bitter, angry and desperate about the outcome of treatment - one even said the aftermath made him think about suicide every day.

I have to confess that it's very tempting to go back to getting obliterated every night, but I'm aware that could cause even more problems - bleeding ulcers and endoscopies are no fun and I also suspect I have some cognitive impairment as a consequence of my many years of stupidity with the bottle.

I have some heavy tranquilisers I generally try and avoid because of the risk of tolerance/addiction but I will probably resort to that at some point. I have some powerful ones that made me sleep for 16 hours the first and only time I tried them so it might be an idea to knock myself out for a few days prior to getting my results.

 

Edited by member 07 Oct 2021 at 21:57  | Reason: Not specified

User
Posted 07 Oct 2021 at 22:04

Also just to add another case for optimism, I went for radiotherapy (half dose of external beam, half dose of HDR brachytherapy) and the hormone therapy which comes with it. RT was 26 months ago and HT finished 9 months ago. Over last couple of weeks, I've been waking at night and in the morning with erections, so I'm pretty sure my testosterone is returning (I'll know for sure in a couple of weeks when my next PSA/testosterone test is due). I don't yet have libido back (although that could be because I'm very busy with other things.) I can have a successful wank, but I've been able to do that all throughout treatment, although with no libido, it's difficult to be bothered. So I'm optimistic that sex will be back to normal, probably with dry orgasms (which they are now, although the HT does that temporarily anyway). You can lose erections over time as a result of radiotherapy, but it's less likely than with a prostatectomy. I was speaking with the leading authority on RT and HT impacting erections (because I cover it in a class I often give), and if it's going to happen, you will start to see the effect within 2 years of the RT - I'm just past that so I'm keeping my fingers crossed.

Of course, many men who don't have prostate cancer and treatments lose their erections as they get older for many other reasons, and none of us is immune to that. Apparently, 50% of 50 year olds are starting to get some ED. Unexpected loss of erections should always be investigated because it can be an early warning sign of several serious diseases which are still treatable at that point. Many men in hospital with their first heart attack report that they started having erection issues up to 3 years before. It's also the route by which many diabetic men are diagnosed.

User
Posted 07 Oct 2021 at 23:07
I think the statistic for people experiencing depression after being told they have any kind of cancer (not just prostate cancer) is quite high, particularly after treatment is finished - Macmillan have an area of their website devoted to this.

At the moment you don't know that you have cancer, you certainly don't know whether you will be recommended to have treatment or what that treatment might be. Once you get to that stage, if you decide not to have surgery or brachy or whatever, that will be your right. But at the moment you are tormenting yourself with unknown horrors. You certainly have an unnecessarily negative understaning of the risks - that's the problem with forums ... people who had treatment and then had no side effects and got on with their lives tend not to need to hang around a cancer patient forum.

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

User
Posted 07 Oct 2021 at 23:58

Thanks Lynn.

Unfortunately what has really almost extinguished the small sliver of hope for me was seeing the huge lumps on my scan. I wish the consultant hadn't shown it. I cannot see any way in which some degree of degradation in my quality of life is not inevitable.

In addition to this the hospital gave me a roughly-typed printout of the risks of the biopsy after the pre-test the day before, with numerical odds against each possible outcome.  One of these outcomes was of no cancer being found, with a risk of "between 1 in 50" beside it, It seemed an odd way of putting it given that "between" suggests a value within a high and low parameter so I assumed/hoped it was some sort of error. It was still scary to see such low odds though.

Part of me strongly wants to talk to my mother, who until my aunts living abroad were so kind was the only person I thought cared if I lived or died on a daily basis, but the effect this will have on her terrifies me.

She has been through so much in her life and handled it with extraordinary fortitude - almost too much fortitude at times. Ironically it's only relatively recently that I've understood some of her behaviour that often made me angry and caused conflict between us, as an understandable consequence of the crosses she has had to bear. This situation comes just at the time when her mental strength has collapsed for the first time I've ever witnessed.

I know it's irrational, but I can't help feeling guilty for what I'm inadvertently about to confront her with. I've already dragged her down so many times before with my problems - she's even had to call the police numerous times to cart me off to the mental health unit after I called her blind drunk and suicidal in the early hours. (Amusingly on one occasion I woke up on the floor the next day with no recollection of events whatsoever and was astonished and terrified when a bunch of policeman banged on the door and shouted that if I didn't respond they would force entry - it was the time legal action for illegal downloading of music torrents was a big thing and I was convinced I'd been caught). However that was nothing compared to what's coming.

Edited by member 08 Oct 2021 at 00:03  | Reason: Not specified

User
Posted 08 Oct 2021 at 00:27

By the way Andy, thanks for your PMs - as you know I'm not allowed to reply yet and I sometimes miss emails as I get a phenomenal amount of spam, marketing & phishing emails at the moment. If I tell you that I've pruned them down to 1,700 from over 6,000 you might get an idea of the problem!

User
Posted 08 Oct 2021 at 15:14
You talk of the formidable attitude of men on this forum and it is from mutual support and becoming more aware about PCa that we gain knowledge and strength. But the majority here are either struggling with treatment or concern about what may come next. You don't read much here from the many men who have successfully had treatment, most without a support forum and have just been able to get on with their lives being cautiously optimistic that either PCa will no longer be a problem for them or if further treatment is needed they will deal with it. Statistically, far more men die of something else than their PCa. Appreciate that you have to deal with additional problems, so things are likely to be more difficult for you and as previously suggested support beyond that given for those with PCa may well help.

If there are any questions you have about PCa we will do our best to help answer these through our accumulated experience, although not being doctors individual diagnosis and treatment options are for the patient's medical consultants to advise on. Having said that, patients are often given treatment options and it is here that it can be useful to tap into the experience of members.

Barry
 
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