Mr Angry, I cannot, will not, offer words or advice regarding your Prostate cancer because I have no personal experience of your journey, horrendous as it is, but I am sure, No - I am positive, that those men who understand you will respond and will do so with genuine feeling for you.
On your other issues, well what can anyone say.
Your life has sucked and continues to suck. None of this is your fault. The people you want to kick out at are no longer around to enable you to inflict the sort of punishment you feel they deserve.
Your mother was a victim too.
It was probably very hard for her to admit what her husband had put her through.
What mother wants to inflict the thought of his father raping his mother on a son. Perhaps she thought she was protecting you. Perhaps the idea of sending you away to school was to protect you. She could not have foreseen that you would have "victim" written on your head and would be the prey of another abuser.,
None of us can know what ran through her mind. I would think most of us would find walking in your shoes (both past and present) very difficult but the only one who can control your situation is you.
We can offer you all the support we are capable of and I certainly do, but I am not a counsellor, just an ordinary person who has also had her share of life's unfairness, as indeed do a lot on here.
Your anger has to come out or it will fester and destroy you.
Are you going to let the b******s who ruined your life win. Will they actually take everything from you? Will you allow that
Yes they will. People like you've described have no empathy for others, no love, no saving graces. They are just destroyers but they win if we allow ourselves to be destroyed.
You have a loving partner, somebody you want to marry so presumably somebody who is sharing your load and your journey. Will you make her a victim too because you want to give up?
For a lot of us women it feels like failure when we can't get through to our men. If you are in a loving partnership then the journey has to be shared so that the burden can be halved.
If you have not had a response to your oncology nurse's request for counselling then follow it up. There are many reasons why you haven't heard, the easiest answer being a simple mistake and her request has been overlooked.
You get no joy through her then go to your GP. Don't. please don't assume that nobody cares because that is a sweeping statement and isn't true.
We care. It's why this is such a successful site. We look out for each other, we support each other. There may well be folk on here with the skills to guide you in the right direction for the help and support you obviously need and I sincerely hope they come forward.
Don't give up on yourself, your partner, your brother, your life.
You have it in you to fight back, even though you currently feel so tired you can't make the effort.
Give yourself a chance to heal, both mentally and physically.
Just don't say life isn't worth it and give up.
At least give it a chance to prove that things can get better for you, not us, not anyone else, but you, so give it a chance.
My best wishes
Sandra
Edited by member 10 Jan 2017 at 19:27
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Dear Mr A
I was lucky, I have no bad memories from childhood but I did get Gleson 9 advanced PCa age 49, my dad had pca too but our doc never suggested a test although I saw the glint in his eye when he diagnosed me and said ah yes your dad had this too. So for lesser reasons than you I was scared and upset not angry about my situation but I then had my own wake up call. I decided that whatever bad had got me to where I am no good comes from feeling glum about it.
I am no strong hero but I decided to live for today, maybe tomorrow but never worry about what i can't change yesterday or what may never happen in the future. It works for me. I saw a shrink, I decided not to wait for an NHS referral and found my own from their list. So it cost me £60 an hour, what price sanity? Yes I had less to undo and for me it didn't do much apart from make me realise that I didn't need a shrink to enjoy the bits I can today.
Clearly I am not a councillor or similar so what worked for me may not work for anyone else but every day, I work hard mentally to smile and enjoy the things I can like being outdoors, good food, sport etc I hope that by reading this you may be able to focus on some good things whilst sorting out a councillor.
We are all rooting for you here and we all have the same outcome male or female as the reaper gets us all one day but before he raises his scythe I for one want to live the good times my health and rescources will allow.
Take care, keep posting
Kevla
Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018 |
User
Mr Angry
In today's world, it's almost as if we are not allowed to be angry. I think you're entitled to be angry. In my dark moments, ive had people tell me to stay positive, to be a glass half full and not a glass half empty type of guy. Well, I've felt like punching a few people recently, but I know they mean well and probably don't know what to say.
I'm 46 and am Gleason 9. I've two teenage kids. My career is probably disrupted. I've got major travel plans. So, at times I'm sad, I'm worried, I'm angry. But predominantly I'm remaining positive and will do my best to be as positive as I can be.
You have been through too much for one individual. I won't offer advice. I just hope you can find some peace.
With every best wish.
Walter
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Mr Angry, I cannot, will not, offer words or advice regarding your Prostate cancer because I have no personal experience of your journey, horrendous as it is, but I am sure, No - I am positive, that those men who understand you will respond and will do so with genuine feeling for you.
On your other issues, well what can anyone say.
Your life has sucked and continues to suck. None of this is your fault. The people you want to kick out at are no longer around to enable you to inflict the sort of punishment you feel they deserve.
Your mother was a victim too.
It was probably very hard for her to admit what her husband had put her through.
What mother wants to inflict the thought of his father raping his mother on a son. Perhaps she thought she was protecting you. Perhaps the idea of sending you away to school was to protect you. She could not have foreseen that you would have "victim" written on your head and would be the prey of another abuser.,
None of us can know what ran through her mind. I would think most of us would find walking in your shoes (both past and present) very difficult but the only one who can control your situation is you.
We can offer you all the support we are capable of and I certainly do, but I am not a counsellor, just an ordinary person who has also had her share of life's unfairness, as indeed do a lot on here.
Your anger has to come out or it will fester and destroy you.
Are you going to let the b******s who ruined your life win. Will they actually take everything from you? Will you allow that
Yes they will. People like you've described have no empathy for others, no love, no saving graces. They are just destroyers but they win if we allow ourselves to be destroyed.
You have a loving partner, somebody you want to marry so presumably somebody who is sharing your load and your journey. Will you make her a victim too because you want to give up?
For a lot of us women it feels like failure when we can't get through to our men. If you are in a loving partnership then the journey has to be shared so that the burden can be halved.
If you have not had a response to your oncology nurse's request for counselling then follow it up. There are many reasons why you haven't heard, the easiest answer being a simple mistake and her request has been overlooked.
You get no joy through her then go to your GP. Don't. please don't assume that nobody cares because that is a sweeping statement and isn't true.
We care. It's why this is such a successful site. We look out for each other, we support each other. There may well be folk on here with the skills to guide you in the right direction for the help and support you obviously need and I sincerely hope they come forward.
Don't give up on yourself, your partner, your brother, your life.
You have it in you to fight back, even though you currently feel so tired you can't make the effort.
Give yourself a chance to heal, both mentally and physically.
Just don't say life isn't worth it and give up.
At least give it a chance to prove that things can get better for you, not us, not anyone else, but you, so give it a chance.
My best wishes
Sandra
Edited by member 10 Jan 2017 at 19:27
| Reason: Not specified
We can't control the winds - but we can adjust our sails |
User
Dear Mr A
I was lucky, I have no bad memories from childhood but I did get Gleson 9 advanced PCa age 49, my dad had pca too but our doc never suggested a test although I saw the glint in his eye when he diagnosed me and said ah yes your dad had this too. So for lesser reasons than you I was scared and upset not angry about my situation but I then had my own wake up call. I decided that whatever bad had got me to where I am no good comes from feeling glum about it.
I am no strong hero but I decided to live for today, maybe tomorrow but never worry about what i can't change yesterday or what may never happen in the future. It works for me. I saw a shrink, I decided not to wait for an NHS referral and found my own from their list. So it cost me £60 an hour, what price sanity? Yes I had less to undo and for me it didn't do much apart from make me realise that I didn't need a shrink to enjoy the bits I can today.
Clearly I am not a councillor or similar so what worked for me may not work for anyone else but every day, I work hard mentally to smile and enjoy the things I can like being outdoors, good food, sport etc I hope that by reading this you may be able to focus on some good things whilst sorting out a councillor.
We are all rooting for you here and we all have the same outcome male or female as the reaper gets us all one day but before he raises his scythe I for one want to live the good times my health and rescources will allow.
Take care, keep posting
Kevla
Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018 |
User
Mr Angry
In today's world, it's almost as if we are not allowed to be angry. I think you're entitled to be angry. In my dark moments, ive had people tell me to stay positive, to be a glass half full and not a glass half empty type of guy. Well, I've felt like punching a few people recently, but I know they mean well and probably don't know what to say.
I'm 46 and am Gleason 9. I've two teenage kids. My career is probably disrupted. I've got major travel plans. So, at times I'm sad, I'm worried, I'm angry. But predominantly I'm remaining positive and will do my best to be as positive as I can be.
You have been through too much for one individual. I won't offer advice. I just hope you can find some peace.
With every best wish.
Walter
User
hi
only advice I can offer is contact McMillan e nurse in your area she can organise counselling with their own people, have had some myself.
regards
nidge
run long and prosper
'pooh how do you spell love' 'piglet you dont spell love -you just feel it' |
User
Hello Mr Angry
Your story is utterly awful and I wouldn't be qualified or even know where to start to help you to be honest. My own childhood was very unhappy and my brother and I both have severe ongoing mental health issues. It is because of this that I desperately didn't want surgery , and like you asked to be completely left alone. I more or less still stand by this because I am not cured yet suffer with all the side-effects. I was symptom free at diagnosis.
I had the op done as I am married with children , the youngest being six years old. It is great that you have your rock and a reason to carry on and fight. I haven't had injectable HT yet but did have 11 months on Bicalutamide 150 mg daily which did affect me but not terribly I suppose. It dropped my post op psa from 2.4 to 0.13 and held it there , so I reckon it may be an option for you to try. A lot of people don't understand mental illness , whatever the cause , but it does deeply affect your life and thinking. And it IS your life and your cancer , and quality of life is a major factor in my thinking also. I haven't decided what treatment I may have in the future but rejected RT twice already on the grounds that it wasn't going to cure me. It's good that you posted your feelings and please stay with us
Chris
If life gives you lemons , then make lemonade |
User
Not much point blaming your dad for giving you cancer - being a male you had an 80% chance of getting it anyway if you lived long enough.
There are members here that have similar experiences and recognise your pain - have lost their only child or both their children, have experienced close family members with cancer, have had late diagnosis and / or doctors who didn't explain things very well. There will also be other men on here who were sexually abused as children; although I can't think of anyone that has posted openly about this the research shows that 16% of the adult population has experienced sexual abuse in their childhood. The difference I think is that there will be very few people that have been through the total everything that you have.
The main thing I would say is that the oncology nurse's response was unforgivable for a professional - all health staff should have had regular training on CSA and how to respond to disclosures.
The second thing is that many survivors are able to put their experience of abuse in a box and get on with their lives - it is a minority that are so badly damaged and continue to struggle throughout adulthood. Those that struggle often share features - abuse from more than one perpetrator, a belief that adults knew but stood by and did nothing, poor education experiences. It seems you tick all the boxes. For what it is worth, most non-abusing parents have no idea that their child is being harmed and those who do know but allow it to continue also share features ... most commonly that they themselves were abused as children or are victims of domestic violence.
Learned people in this area believe that one of the ways to resolve the damage done to you is to speak out. The Children's Commissioner's national review of familial sexual abuse has just closed so you cannot tell your story but you may find it helpful to read the interim findings from last year - you may recognise much of what was concluded. On the other hand, the independent inquiry into institutional abuse (IICSA) has a truth arm to it where anyone that has been abused in a school, children's home, religious organisation etc can tell their story with an assurance that they will be believed. So far, the age of survivors self referring has been small children to people in their 70s and 80s. One setting is being investigated based on a man's testimonial of things that happened to him in 1947. In some cases, totally unrelated people have reported the same teacher's (or social worker or whatever) name. It is never too late to tell your story.
In terms of counselling, perhaps your needs are way beyond the experience of gift of the average oncology counsellor. I would ask you to consider contacting NAPAC first and see if you can start to heal that little boy.
On the matter of your PCa (which is of course what you joined this forum for) I am not sure why you think a change to bicalutimide might be a good idea? What is your thinking on this?
Edited by member 12 Jan 2017 at 21:20
| Reason: Not specified
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
A stiff neck will heal in time.
Vans can be replaced easily enough.
Most important thing is that you were not more seriously injured.
atb
dave
Do all you can to help yourself, then make the best of your time. :-) |
User
So another blow for you Mr Angry and again something beyond your control, and I sympathise with you and hope the neck at least is feeling better.
It's a shame that you have read Lyn's post and have a negative attitude to it as she was trying to support you as she does with all of us. She has a wealth of knowledge and is one of the "go to" people for information as she has experience of not only her husband but also her father and father in law having had Prostate cancer.
I don't think anyone reading your original post could be left untouched by it.
We are shocked on your behalf but none of us can wave a magic wand and make it better for you.
All we can do is offer our support and a listening ear and perhaps give any information we can so that you can seek help for yourself.
You are so angry (and I accept that you have every right to be) that perhaps you are seeing everything and every one as trying to do you down and destroy you and perhaps you feel that we aren't responding in a suitably shocked way. I don't know. I do know that we have welcomed you and that we are willing to give you as much support as we practicably can but it's all going to be virtual isn't it ?
The only person who can make a difference is you yourself.
Why would you go to the hospital to see a consultant and before you've even got there think
"I have an appointment with a consultant I have never met, on the 31st January. How that will go I suspect will be a disaster and we will end up in a row."
It doesn't have to be like that. Just because you have had some unfortunate dealings with one lot of medical staff doesn't mean they will all be like that. Go in there seeking information. Get your list of questions sorted before you go in so that you have a plan of what to ask. Take somebody (your fiancee?) with you. It helps when taking in what is being said
The following websites may be of use to you if you go into them. A couple are NAPAC like Lyn said
www.survivorsuk.org/
patient.info/support/napac-national-association-for-people-abused-in-childhood
www.mindingyourhead.info/.../napac-national-association-people-abused-childhood
thesurvivorstrust.org/national-helplines/
Nobody else can do this for you. You have had a s**t life but it will never get better unless YOU take control of it.
You have been a victim.
Don't be that person any longer. Actively sort out your own counselling. Ring Samaritans and ask them for guidance of where to go.
Nobody is going to do anything for you unless YOU make it happen
We can't control the winds - but we can adjust our sails |
User
Perhaps out of the darkness comes light
A new start for both of you. I don't suggest that you can put everything behind you, I'm sure that's impossible but a new home together is a new beginning.
I wish you both well and for you, I wish you peace and acceptance.
The past cannot ever be undone. But the future can be re-made and you have just the lady to do it with
We can't control the winds - but we can adjust our sails |
User
Mr angry, it sounds like u have a lot going on for you at the moment and you need people to listen to u and you want people to know how U feel and what u are saying.
I don't think counselling will work for you at the moment, maybe in time look at the napac website as they are the 'professionals' in that area. I understand from what U have said that you seem to be at a loss at the moment. Your journey could be a long one and will be a journey that you may walk forever.
Edited by member 25 Jan 2017 at 11:46
| Reason: Not specified
Peace out 👍 |
User
Yes you have to nag and be a nuisance sometimes just to get a reasonable standard of care, the 4% pay rise for treatment comitee is particularly galling!
I live in Wales but it is common here to be treated over the border because of the geography. Wales NHS were happy for me to be treated in England but wouldn't pay for any follow up. For this I was supposed to go miles away and see someone else!! Fortunately I was able to join my company scheme and see my consultant privately. So much for a National health service!
User
Hi Mr Angry,
I hope you are feeling better in yourself? I saw your original post when you put it on .
You are not alone in having a difficult past and I found I had dealt with it all until the HT kicked in .
I have a great counsellor who is trying to help me understand my feelings and put them back where they belong - in the past.
I have Gleason 9 and waiting for results after Brachy and RT so my mind is a bit messed up at the moment. I can’t imagine how yours was as my past wasn’t quite so difficult , but still unpleasant, left me scarred and I couldn’t put it on here.
I believe there are others on here who have suffered, in the past and through the HT and don’t say anything , which I can understand. It’s not easy to say the things you did.
I just wish you all the best and hope you come out the other side OK.
Edited by member 16 Aug 2018 at 20:18
| Reason: Not specified
User
Hi, thanks for the reply. Since getting off the Prostap things have been returning to 'normal' but it is a slow process. After 6 months no change then during the last 3 months hair has started to grow back on my hands and fingers and I can almost sleep through at night.
Perhaps you are right about the treatment affecting my thinking as we went on holiday recently to the town where a part of my childhood happened. We stayed there for 2 nights and looked up places I had not seen in almost 60 years. It brought back memories but with help from 2 cousins I haven't seen since 1956 (contacted via Facebook) I found my grandparents house, their bakery and shop and the swimming baths etc etc. It has given me some peace about it all.
Just hope that when I go back on Prostap/Zoladex/Bicalutamide things don't deteriorate.
My avatar is a picture of me aged about 7 learning to ride a bike. I kept falling off but my brother learned immediately so I sat on the grass finding a blade of grass very interesting to look at......
Edited by member 16 Aug 2018 at 20:33
| Reason: Not specified
User
At last! Somebody else that isn't all happy & loved up about Prostate Cancer.
Despite a few large "challenges" in my life, including losing my first wife in an accident that left me in hospital for 6 months, I was leading a reasonable existance.
Prostate Cancer has buggered it up.
My wife & I (I remarried) walk to the shops for life's essentials.
I was diagnosed with no symptoms at all in June 2016.
PSA 14.7, Gleason 9.
After prostate removal & radiotherapy, (which seemed the right thing to do at the time), despite constant exercising, I'm still peeing more than a pad can hold and having to wear dark jeans only as they disguise the soaking wet patch a bit better than light jeans.
I no longer enjoy even the thought of a walk as I know I'll be wetting myself at some stage.
I love my wife, we liked having sex. That has stopped.
The operation (and probably also the hormone tablets) have shrunk my penis to a comical size.
I have absolutely zero thoughts about sex ever.
I bought a sports car too......Sold after a short time because that didn't mend anything.
I enjoy......watching TV.
I see folks on here listing PSA numbers years after treatment and in all honesty,
I 'm really not interested in extending my life as I'm just not enjoying the different version I have now.
Everybody has to die at some time, that is a fact.
Extending my life for the sake of just existing may have been (in my opinion & in my circumstances), a mistake.
Life's not just about your final tally of how many days you've lived, surely?
I wish I'd thought for a bit longer before leaping in with both feet for immediate treatment.
Hope this doesn't upset folks, just my honest opinion.
PSA 1 year after operation......very low......Now has risen slightly.
Couldn't care less.
User
John has bitterly regretted have the op and still sometimes says that he wishes he had just taken a shorter life without these side effects. The fact is, if the cancer had been left untreated it would not have been a short life without the side effects as the impact of advanced prostate cancer would eventually include all of those side effects he wishes he had avoided.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
Unklian, having read lots of 'positive' posts, letters etc about how wonderful living with prostate cancer is, I too often regret having the treatment. In fact at the first session of RT, I was scheduled to see the consultant to discuss the treatment. All the docs had suggested the RT and Prostap - its a default setting - and before the first dose of RT I asked the consultant about the side effects, life expectancy and so on. Once she had repeated what I had already heard, I asked her straight out how long I would likely live without any treatment. She was direct and said 18 months.
Hand on heart and if I had been single (in a long term relationship then) I would have walked out and taken my chances knowing what I know now. It seems my father took this route and he died aged 69. The side effects for me on Prostap were bloody awful. Getting up 6 times in the night in the months after RT, dizziness, fainting, short term memory loss (makes routine conversation very difficult), pain in joints especially knees and ankles, fatigue, loss of muscle strength, pins and needles in hands and wrists (so bad the consultant thought it might be diabetes) and very bad mood swings with thoughts of jumping off Beachy Head. Like you, no interest in sex at all and penis has halved in size plus have to sit when going for a pee.
I think many people see Prostate Cancer as not so important as other cancers because there are no outward signs and a lot of men say its no big deal blah blah blah. I've been off the Prostap for 10 months now and nothing much has changed. I can sleep a bit better at night now and only get up twice usually. The hair has grown back on my hands and fingers but I still get very tired at set times of the day. I don't think about Beachy head now. No sex interest and my penis has decided to stay the same size.
Thanks for posting your thoughts which seem to be a bit like mine. I too get pissed off with the 'be positive' brigade - well intentioned but seriously misguided - and those who 'think' they know what they are talking about. Until you've actually been here, you don't really know.
Edited by member 17 Aug 2018 at 16:45
| Reason: Not specified
User
On diagnosis I was told I could have 10-15 years if I did nothing and 30-35 years if they got all the cancer. Why did I want to put myself through those possible side effects, I was not going to have any treatment and one of the first things I looked at was how am I going to die ? I bottled getting off the anaesthetists table and had the op. Over four and half years of proding, poking and SRT has changed my views and left me regretting having treatment. I don't very often reply to posts from newbies I would not wish to deter newly diagnosed men from having treatment, for some it works out well.
Thanks Chris
User
I desperately didn’t want treatment aged 48. I was rightly terrified of the results of surgery. I had a mental health crisis team out two weeks before surgery. I walked out of pre op assessment half way through. I was rung constantly daily till I gave in and had surgery which was a total waste of time tbh , being now incurable. Do I want to die ? No not at all. Did I want to live with this ?? No not at all !
It’s a terrible curse especially at a younger age I think. I too was told I may have two years left untreated , but the three years I’ve had have been mostly hell with some nice moments. I think the next few years will be hell also, losing my masculinity and QOL. Sometimes I wish I’d stuck with my firm “no “ !
If life gives you lemons , then make lemonade |
User
One of the problems when deciding whether to have treatment for PCa is not knowing how you will be personally affected in terms of success and side effects. It's probably true that most men who have treatment that is successful and with minor side effects are happy they had it. This varies until at the other end of the scale men who suffer severely from side effects and or their treatment has to be ongoing may well regret they had it. Maybe consultants could be more helpful in stressing in greater detail the pros and cons of having treatment or rejecting it before the decision is made. But even consultant's often cannot predict outcomes or responses with accuracy and ultimately it's for the patient to decide how far to go having consider potential risks. Perhaps greater help and understanding should be offered to those who fare badly, also taking into account how this can affect men psychologically as well as physically.
Barry |
User
The other thing to consider is how well would I have coped mentally by not having treatment and possibly having regrets when it was too late to have curative treatment.
Thanks Chris
Edited by member 17 Aug 2018 at 22:49
| Reason: Spelling
User
Our instinct to survive is very strong so when an expert i.e. consultant - even one you've never met before - tells you that he/she wants you to have RT and Prostap, you will in all probability jump at the chance to be 'cured'. You may only have known you have PC for a day or two so you are not in a fully rational state of mind. The locum who did the biopsy and told me what treatment he wanted me to go on said he was "going to 'cure' me." Hearing the word 'cure', who is not going to jump at the chance of beating PC?
So off I go and read up stories of how hormone treatment is not so bad and so on. Then on the day I started RT the consultant in Leeds asks me if I am aware of the side effects of both RT and HT. I mentioned that this was the way to 'cure' me as told by the previous consultant. She raised her eyebrows and said, 'No this is not a cure. You are very unlikely to be cured.'
So what do you do? Your first RT session is 5 minutes away, you've done your first enema, you've waited for this day and the hope it is going to give you. Of course you go ahead and do what they say. No one ever told me the side effects were this bad. Some people, allegedly, breeze through HT with little or no problems. I find that impossible to believe. My brother who is as laid back as anyone has said he just grins and bears it as he has no real choice.
Even the HT 'holiday' is a misnomer. It takes so long to recover you don't feel as though you have actually been taken off the drug. More than 6 months for any improvement for me and even now, 10 months in, still got some side effects. I was warned some men never actually lose the effects and in many cases at least 12 months before seeing improvement. And in that time the PSA is going up so no doubt it wont be too long before the conversation turns to, 'it might be a good idea to go back on Prostap to keep the PSA under control.'
User
Some men do find the hormone holidays worthwhile, plus there is some reasearch that suggests that if you can manage IHT it delays the point at which you become hormone refractory. Topgun and George are good examples.
I don’t suppose anyone is happy to get any kind of cancer - what is terrible about prostate cancer is that unless you are in the midst of it, it is seen as some kind of pseudo-illness
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
|
User
'Pseudo-illness'? Yes, that probably sums it up for some who don't know or understand.
While I come across on here as a moaning old Victor, I do live a 'normal' as possible life. I've landscaped the gardens, built and fitted a kitchen, knocked down a garage and so on. The problem then is that some of the family seem to think there is nothing wrong with me as I carry on as before. Even my wife has admitted she 'forgets' sometimes!
On a positive note, I have been to a meeting with the West Yorkshire and Harrogate Cancer Alliance concerning the disparity in treatment between 2 adjoining CCGs. They have a large meeting planned for late September in Wakefield and they have asked me to make a short presentation to all those health professionals in the area to show how this affected my treatment.
I've also been to a meeting with the CCG cancer reps to try and get the same regime where I now live as I did at my previous CCG (4.5 miles away). This anomaly despite both CCGs using the same hospital. I've tackled the chair of the CCG at a 'Happy NHS 70th Birthday' celebratory event which was not best received. Just had a letter published as the letter of the week in the local paper who are tackling the poor state of the CCG - £16.6m in the red - but able, it seems, to award themselves a 4% pay rise taking the chair's pay to £130,000 p.a. (on top of his GP salary for goodness sake) and the chief executive's to £120,000. Amazing, reward yourselves for incompetence.
User
Treatment for PCa can be a lottery. I fully understand why you are angry with your treatment. I DO know how you feel, by reading your posts and sensing the pain and suffering they portray. I do not have to had experienced it personally to understand.
most people come to this website for help and support, usually in a distressed and unsure state soon after being diagnosed with Pca.
I would like to share my success story so far with those people;
I am being treated by the Somerset NHS in the west country and the treatment I have received has been nothing short of amazing.
When I was diagnosed as Gleason 4:5 and T2c early in March, I was placed on an accelerated pathway due to the aggressive nature of my Pca and in fact after my initial diagnostic MRI scan I then received a bone scan CT scan and two further MRI scans in 5 weeks, to rule out any Pca metastasis.
My oncologist and my designated cancer care nurse are both incredibly professional, dedicated and empathic people. My treatment pathway was fully explained to me and why it was the best choice for me to have 3 months Hormone Therapy then 20 fractions of RT. It was explained that as my Pca was over 80% surgery was not an option in my case, as they could not guarantee leaving enough cancer free tissue after RP.
it was explained by my Oncologist that my treatment pathway was curative, not palliative. So my journey began.
I am an extremely fit 66 year old and and I’m in no doubt at all, as my cancer care nurse told me, this would stand me in good stead throughout my entire treatment schedule. She was of course correct. I have only suffered hot flushes and some ED during HT. I have seen a lot of bad stories on here about peoples reactions to Prostap, I was put on Triptorelin but I am sure everyone is different and reacts in a different way to different drugs.
Three weeks before my radiotherapy was to begin I went to The hospital where I would be receiving my treatment for an open evening where I met a group of people most of whom were in the same situation as me and I made friends with a guy who lived a mile from the hospital which is in the centre of Bristol and he let me park at his house while I walk for my treatment. This kindness has saved me 2 hours a day by not having to use a park-and-ride and two buses.
As I progress to fraction 10 on Monday, I have no other RT side effects other than diarrhoea and I’m treating that with Imodium.
I am keeping myself active by cycling moderately after every session I do though feel mild fatigue starting to setting I will keep it going as long as possible. I was told by my nurse to avoid flopping on the sofa when you get home from RT, as a lot of the feeling of fatigue is not actually physical exhaustion. When I get home after a cup of tea and a biscuit I do not sit down, but get changed into my cycling kit straight away and put my bike outside the house so I don’t forget to go!
But of course everyone is different and has different reactions and everybodys story will be different to mine. I just hope my story here will at least get some solace to newly diagnosed members.
Edited by member 18 Aug 2018 at 12:45
| Reason: Added a bit of detail I missed out
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Originally Posted by: Online Community MemberSome men do find the hormone holidays worthwhile, plus there is some reasearch that suggests that if you can manage IHT it delays the point at which you become hormone refractory. Topgun and George are good examples.
I don’t suppose anyone is happy to get any kind of cancer - what is terrible about prostate cancer is that unless you are in the midst of it, it is seen as some kind of pseudo-illness
A very interesting comment Lyn and oh so true! It happened to me only last weekend whilst out on a bike ride with my friends and as we all sprinted the last 400 m to the cafe one of them said to me “are you sure you’re really ill“
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I am 62 and had a raised PSA last November, MRI and biopsy ensued, culminating in a prostatectomy eleven weeks ago.
Disappointingly, although I was told by two surgeons and one oncologist that according to their tests the cancer was contained, the post-op biopsy proved it was not. I am awaiting appointment dates with two oncologists to discuss the way forward.
My PSA is ‘undetectable’ in the last two tests, so I may be ‘cured’ 😉. My only side-effects of all the delving, prodding, poking, chopping and stitching are a shortage in the trouser department and lack of tumescence. Not too bothered about that, but it does give one a feeling of ‘buyer’s remorse’, inasmuch that I sometimes wonder ‘what if?’ I had done nothing at all after the November blood test.
I wouldn’t say the diagnosis of cancer has affected me at all psychologically, as I have been chilled about it from the start. If I had pancreatic, lung or liver cancer, I would be in a different frame of mind!
On reflection, I have no regrets, and I feel as well as I have ever done. I think ‘out’ is better than ‘in’.
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@ Pallance, I read your story with some interest as it looks like I will need to move south-west to get the best care! Don't get me wrong, Bexley Wing at St James Leeds is great - MRI, CT scan, RT, but the care after I moved house, all 4.5 miles, is a disgrace. As my GP said quite candidly, its a postcode lottery. In this day and age that is unacceptable. Hardly comes as a surprise that this area has one of the lowest life expectancy rates in the UK. http://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-surprised.gif
It is still early days with your RT and those effects will slowly build. You reminded me of my RT and coming out of the hospital and getting into my van to drive the 10 miles home. I was about 2/3 of the way through 37 doses of RT and I drove home without any problems (as far as I know). I went into the house and then realised I had absolutely no memory of the drive home. I must have been on autopilot and looking back, it was scary as it was a journey through Leeds city and down the M1. My wife insisted on taking me after that.
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Mr Angry
i am under no illusion that I am in a lull at the moment, approaching session 10 of 20 next Monday the 20th. i insist on driving myself until my wife tells me she doesn’t feel safe with me behind the wheel.
At my interim meeting with my Oncologist I mentioned slowly worsening memory, I told her I was putting it down to getting older at 66 but she assured me that it was more than likely down to a loss of mental accuity caused by my hormone therapy. She told me that the loss of testosterone has an effect on mental sharpness.
I keep myself mentally active daily with crosswords and quizzes, but often find myself struggling to remember the correct words in a given daily routine situation.
As Gleason 4:5 I was under no illusion as to what my life expectancy without treatment would be, as I was struggling to accept my illness and treatment options.
The do nothing approach and get good QOL as long as possible was an option I considered until my wife and 3 kids reminded me that would be selfish and deprive them of a husband and father early and they were right of course. I put up with side effects I have now and will get after treatment and whatever comes to pass I will keep the brave face and enjoy time with my family and friends
Edited by member 18 Aug 2018 at 21:16
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So have you been moved to Pinderfields? Would the CCG not allow you continuation of care at Jimmy’s?
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Is that what it is? Hormone therapy? I used to do the Telegraph crossword every day and now I either can't do it or take hours. I am also forgetting peoples names........ I'm 51 so it is probably hormones.........:{
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From what I’ve read, short-term memory problems and loss of mental acuity are quite a common side-effect of HT, but the effects should reverse when you finish HT and your testosterone levels rise again.
Chris
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Just read a fair bit of this thread. I often feel like a total fraud when I come on here when I read of the hell people have gone through. What a bloody horrendous choice most of the men have had! Removal with the inherent risk that it doesn’t catch everything but the side effects are horrendous or HT and RT which seems just as bad. Then I remind myself that I was diagnosed May 2017, had had it for 10 years but no symptoms, had Gleason 5+4, PSA 129 with wide spread throughout my bones thus effectively terminal! I’m on Prostap and the side effects are s*** but I’m coping with them okayish. ED and loss of libido is a complete F’er but we still have occasional sex (once a month) thanks to Cialis and if I do orgasm it’s incredibly intense. I’m so glad I havnt been through a lot of what you lot have but I dread what’s ahead! Currently PSA not registered for 13 months and long May it continue. All I can say is it’s a complete b@@@@@d of a disease and if you have it the most important things are to remember “we’re living with cancer” not “dying of cancer” and to remember to live life to the full
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@ Lynn
I was living in Ossett and referred to Pinderfields. They could do no treatment so sent to Jimmy's. Blood tests and Prostap injections done by the GP nurse. Then we moved house from the Wakefield CCG to North Kirklees CCG area (4.5 miles). GP says NKCCG has not adopted the policy for monitoring so they do the blood test - but only a the basic PSA, no liver, kidney or other functions of the full test - and give the Prostap. They do not monitor so if you are depressed, not sleeping, pins and needles and all the other side effects then no one knows and no one is told.
The consultant at Jimmy's understands but is not interested in getting into an NHS policy war so referred me back to Pinderfields. The oncology nurse travelled form Pinderfields to Dewsbury - same mid Yorkshire Hospital trust - and monitored me and gave me the injection. and I agreed to get all the future blood tests done at the GP from then on. She failed to put anything on the system in October 2017 so no telephone monitoring in January '18. Next test April '18 and no blood test forms. On 3 occasions I contacted Pinderfields oncology to get it sorted and all 3 times they promised it had been done. It had not. Only after making the complaint did I get the apology from the NHS and the consultant at Pinderfields with the arrival of a blood test form and a telephone appointment for July. That went ahead okay.
Next PSA test is due in October so waiting to see if the form arrives - the GP will not do it without one despite it being a right for any male over 50 to have one under current NHS guidelines - and already had a letter cancelling the telephone appointment. Except that I have never been told there even was one! How can anyone have faith in the NHS abilities with this sort of incompetence?
If the October appointments fall apart for the blood form and follow up call, I will go back to Jimmy's and ask the consultant to put me back on their system. At the very least, I will be in good hands there as their oncology nurses are fantastic.
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That’s terrible - well done for not just having a meltdown. Surprised at your comment about the specialist nurses though - it is the only aspect of the St James / LGI service that we have found completely failed, not just for John but also my dad, mother-in-law and father-in-law. There again, that was the specialist nurse urology - perhaps the oncology nurses are better.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Ha!
Mr Angry...I can to some degree sympathise and understand where you're coming from...
I was referred out of area for my RP as there was no hospital local who had the facilities or know how to perform a RP ....do you think that the medics involved with my case would / could talk to one another?...
No b****y chance!
Fortunately for me, I haven't to date needed any serious follow up since my surgery..
Regular PSA blood tests are an issue ...as my GP surgery will not do one without the relevant 'bar code' request from my consultant... all about budgets and who's paying I would imagine?
It's very frustrating in this day and age that I have to kick people's asses to get anyone to act!
I'm sure if I was not on the ball and not done quite a bit of research on the subject...together with all the useful info I've learned from others on this site I would have been overlooked to some extent.
My local consultant is very helpful now that he's aware I'm proactive on the subject..
Best Wishes
Luther
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Most people seem to find the experience of diagnosis and treatment, bearing in mind delays that are typical in the UK, is not too bad although the reluctance of some GP's to give PSA tests which in a number of cases has led to men losing time on being diagnosed and best chance of good treatment outcomes lost is not acceptable. Also, I can only put it down to heavy workload but there are cases where a man has to press for satisfactory progression by hospitals. I have had to contact PALS on two occasions to get things moving as I will describe in more detail in a new thread.
Barry |
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I have found that for me the HT is my biggest issue. I have no side effects from the Brachy or the RT and still waiting for blood test to check how it all went. Fingers crossed. I think that the Hospital (Southend) have to take credit for all doing their jobs to perfection. For the RT i was checked before every session for bladder fullness and bowel empty-nes and if not right told to go drink more and come back. Not always easy but i think it paid off. I don't know about long term , we will have to see. I was lucky in that i had no symptoms beforehand even though i am Gleason 9 , PSA 25.7.
The HT is another thing entirely and i am still suffering badly . My counselor says most of this is due , possibly like Mr Angry, to trauma in my childhood. I think i may have whitewashed my complete childhood and so trying to re-gain it is interesting to say the least. I need to do that to regain some self esteem and take control which i think takes a huge hit with the effects of HT itself and the treatment.
Interestingly i had long talk with a friend recently and told him everything about my childhood , which until recently i had never done with anyone except my wife, he was shocked at first and he said to him I appeared to be a different person now - better...Which i was a bit amazed at but must be a good sign. I did find it interesting though how people build a picture of you which sometimes is completely wrong I suppose we all do it although i suppose when you've had bad stuff you always think there may be more to other people too.
I agree with whoever it was said that the mental anguish is underplayed either just with coping with the diagnosis or with the HT treatment on top. i have complete faith in my counselor but we are 9 sessions in and i'm still struggling so its going to be a long haul. Not sure how i'd have coped without her.
i feel that every man dealing with PCa should be offered counselling to help with their thought processes , and stick with it for more that a couple of sessions as it can be long process.
Good luck to everyone out there. it is difficult reading on here sometimes and also difficult writing also, as i am finding out myself but it does help and does feel like a community suffering together. :-)
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@ Goalhanger
Yes, you seem to be much the same as me. The HT really does knock me around although since I have been on a 'holiday' I don't suffer the terrible mood swings and depressive thoughts. 10 months since last Prostap and nothing changed in the first 6 months but then I noticed differences. Not having to get up several times through the night was a bonus. Managing to sleep for 4 hours was another. Then the hair on my arms started to grow again - I'd almost lost all hair on hands, arms and legs - and now its growing on my fingers. Maybe a bit too much now..... Having to shave at least once a day, sometimes twice, whereas on the HT no shaving for 2 or 3 days.
So I suspect the testosterone is returning to former levels which will likely mean the next PSA will see another rise. Depending on how much may mean back on the HT. http://community.prostatecanceruk.org/Scripts/tinymce/plugins/emoticons/img/smiley-cry.gif
I can't believe I had thoughts of jumping off Beachy Head and while the nurse when monitoring said I should get some help, nothing was ever done.
I'm supposed to have a scan in October as it will be one year of no RT but I know for a fact no one will bother to contact me. From my experience, PCa is a second division cancer with all efforts seemingly concentrated on the first division - breast, pancreatic, lung, brain etc.
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As my profile shows 47 months of HT, the first 12 months being the worst but I feel being here was worth it. Long term ED with pills these past couple of years, that sometimes work but decreasingly so, is still emotionally difficult to cope with. Thus I can well understand guys seeing HT as not worth it from a quality of life perspective. However as I grow older life takes on a different outlook so its Ok (Ok is the best I can do :-) ) even with ED. At times I wonder if I would have been better not having ED pills at all rather than this works sometimes with the frustration that brings.
GoalHanger. Very interesting to read your childhood and HT link, my memories are very few. Too much pondering and the shutters come down Thus well done to you in talking about it which I hope helps you going forward.
Ray
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Hello Ray, yes my childhood memories were either selective or non-existant. i accepted this but now i need to know . I still cant talk about it on here i'm afraid . Im not as brave as Mr Angry. In one way i think this has meant i can maybe deal with the stuff i never dealt with before.
i have a number of different things happen that affected me and i am learning that they may have affected me differently to how i thought. All very interesting and difficult to deal with, some of which i trivialised in my memory but my counselor is helping me to understand.
The thing is that all those things affected how i deal with the current and future issues and luckily for me my counselor recognises that.
I am terrified of the future even though so far i know i am doing well.
I havent got private message facilities yet so i cant contact anyone personally and i find it a bit too open on here at the moment im afraid.
i know i will get through this but its not an easy journey with the HT helping me along ! but i know i am relatively lucky compared to many.
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After all the problems getting the request form for the 3 monthly PSA test and telephone monitoring, the Pinderfields consultant said it was the fault of the consultant at Jimmy's in Leeds for not copying him into the letter circulation. He assured me it had all been fixed back in April after loads of hassle. A few days later and the form comes together with a telephone follow up appointment. Excellent.
The test is done, the appointment is carried out and all is good. 3 months till the next one.
I am now overdue a PSA test. Form and appointment letter should have been here before September. No sign. Here we go again.
I kick off and the consultant calls me. He refuses to say why I have not been sent the form and appointment. I press him again and again. He tells me patients should take more responsibility for their treatment. So its my fault then? Am I not taking responsibility by phoning now asking for the bloody form? The conversation deteriorated to the point where I wanted his full name to report him to the GMC.
Suddenly he switched tack and said a trainee had cancelled all telephone follow up appointments which also cancelled all request forms. Can you believe it? But the trainee cancelled them all in August (cancellation letter) and you never knew? No, but I have just discovered this and it has been put right. So, had I not phoned, you know, taking responsibility for my treatment, you would never have found out? No. And no other patient has called asking the same? No. (Unbelievable nonsense) So what about supervision of the trainee? How can he/she do this and no one notice? I'm looking into it. Did it not occur to the telephone follow up nurse there might just be something wrong as ALL her appointments had been cancelled for more than 6 weeks and she would have nothing to do all day? Since August? I can't answer that. I have sent out the form and the appointment has been reinstated for the 2nd October so I've sorted it for you. Am I the only patient who has these problems with you? Yes.
Words fail me.....
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Hi Mr Angry. I have to say it seems to the luck of the draw. I just saw my consultant 7 weeks after finishing the RT and good news my PSA is down to 0.37 and he gave me a blood test form there and then for 3 months time .
i think I am lucky with Southend they have been brilliant in every way. It’s a shame that all hospitals aren’t that good.
Wish you luck with the next test .
Phil
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I now get you Mr Angry. I think as a newbie I have been terribly nieve. I think I was getting excited about the options, treatment choices and taking at face value feedback from ‘experts’ and making too many quick decisions as if I was helping someone else rather than it affecting me and my family. Not sure I want this journey now.
Its just dawned on me after reading massively on this site the journeys of many of the men and the layers of bullsh1t and false hope that is being peddled. Men are being told they are in remission, told they are in a great position post operatively. Being told that they have ’Persistent PSA’ rather than ‘We didn’t get all of it’.
I don’t even think the Oncs know what any prognostic path looks like. They use euphemisms Like ‘Everyones disease is different’ when what they are really saying Is that they don’t know. Then you get the real bastards, the pharmaceutical companies that price treatments out of most people’s pockets or the new nuclear tech treatments like LEU-177 PSMA that have been on the market for 10 years that will never be available to normal people. I have already been exposed to surgeons who think they are oncologists and can master the diseas. One NHS high volume surgeon at UCLH told me your gonna live to 80 then slipped me his business card and whispered that he could do my surgery privately and perform a new ’stem cell treatment’ that would regrow my nerves back and only he was licensed to do it, latest tech from America.
Pedlers of false hope, profiteers and deceivers who are trained at best to keep the lab rats happy at worst to be indifferent. There is a scene in the movie ‘Man on the moon’ about the life of Andy Kaufman, the scene after he has been diagnosed with cancer where he realises time is running out and searches for a cure. Finds a shaman in some remote village who has powers of cure, he witnesses the shaman apparently extracting cancer with his bare hands from the dying. He lays down before the shaman and then sees the slight of hand trick. And laughs !
Fresh
Base jumping without a parachute should be frowned at, never criticised. Fresh |
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Angry, why can’t your GP give you a stack of PSA blood test forms, as mine did, so you can have one when you want. I had one a month post-op, and am up to three-monthly now.
If I go to the phlebotomist at my local Lloyds chemists for a test today, the results appear on my iPad EMIS Patient Access app around 8.30 next morning. No need for any doctor or nurse involvement as long as my PSA is undetectable.
“taking responsibility for my treatment”
Cheers, John
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Because his GP refuses to do the PSA test unless the hospital sends a form - read back in the thread
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
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Fresh FFS. You are suffering PTSD or something! Since when did you think humanity was anything but ultimately self serving!!
I see the reason for your distress in your profile - another PSA test and it's gone up?? It's bad news no doubt about it and you should see an ONC for a second opinion rather than the self serving t*** of a surgeon you have seen previously..
You need someone who can assess the true risk from your final pathology (focal breach, how much, G stage at the breach etc) Not all experts are idiots but it has been my experience that any medical profesional who even mentions the cure word is a close as you get to one!!
The good news?? you had a positive margin and hence an explanation for a detectable PSA. You need to consider ART to mop up the bit your pompous surgeon missed..
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Bollinge my dear chap. My GP is in North Kirklees Care Commissioning Group where they don't spend money on patients, rather they give themselves pay rises. The GP will not authorise the PSA test without the form because he will not get paid. Its all about the money, not care. 
As for "taking responsibility for my treatment", I have been attending Cancer Forums, meetings and giving talks to patients and health professionals alike plus letters and calls to The Care Quality Commission, The Ombudsman and the local paper to try and get improved care for prostate cancer patients in this area. As Healthwatch Wakefield said today, "No one has taken more responsibility than you for your treatment" 
@ Lynn - on the ball as usual. 
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Angry, I understand why you are angry. I wasn’t suggesting you were not taking responsibility for your treatment, as you seem to have been very proactive in that regard! I was just repeating the rather callous words from your consultant.
It seems post treatment PSA and indeed pre treatment PSA testing is a complete lottery, the first depending on post code and the latter on the whim of a GP to decide which box to tick on a phlebotomy form.
I think I read the PSA test costs the NHS about eight quid, but a private option has just popped up on Google as they are wont to do, at a bargain £178!
My gas boiler broke down this morning, and I did a Google search. I have had three boiler replacement ads pop up on Facebook already.
Hope you get the bloody blood form soon!
Cheers, John
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John, or anybody that knows
I see your mention of the EMIS application. I tried to get started but if your GP is not registered it doesn't appear to work. Do you know if its also possible to register it to your hospital so you can see your results ?
Thanks
Phil