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Feeling angry and letdown

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User
Posted 15 Jun 2020 at 18:22

good evening,

hi I'm Tracey wife of bakerboy(Tim) we often visit the forem as my husband is 7 weeks post op after having a RP removal due to a aggressive form of cancer present, the reason I'm writing this post is even though your feedback is good I feel no one really tells you how your going to feel after this has happened ( I'm not knocking the treatment or NHS as treatment was fantastic) at present I'm watching my husband suffer with mood swings anger and lots of emotions which any good wife would be there for them,I cannot answer all his questions or fears the biggest one is ED and being 55 is a big deal not just for him but me also, he is taking the tablets prescribed and yes we both know it's early days,but since diagnosis to removal not one medical person has ever explained why this will happen and never once explained how this can effect your mental health it feels that you are just put on a shelf and left alone to deal with all this, everything I have had to find out about PC I have read in books provided,or the internet, my fears and anger are for him I feel that with PC there is no real support after all he has been through,

i would like to know how other wives and girlfriends and partners feel as feel my husband has been let down in more ways than I can explain thank you for reading Tracey 

User
Posted 15 Jun 2020 at 20:06
Hi Tracey my story is really long but maybe worth the read as I nearly put off treatment for fear of ED aged 48. I won’t lie but this disease can destroy a man or woman or both. I’ve seen many people that this has happened to over the 5 yrs I’ve been a member. You need to know if your hubby had nerve sparing surgery or not , as the treatment path is different. Either way it’s a blo**dy long haul to get back to normal sex and you have to make the most of what you have and find other ways , whilst at the same time pushing for all the treatments and trying them all and seeing what suits you both. It isn’t game over , and if you are an understanding couple it can be lots of fun trying new stuff. An absolute MUST at around 10 weeks is a good quality vacuum pump which must be his best friend on nearly a daily basis. Can be used for daily rehab or indeed penetration with rings. If he has had nerve sparing then daily 5mg Tadalafil ( Cialis ) seems to be the gold standard for aiding recovery. I know some men have just sat in a dark room and watched their marriage crumble over this , so you must seek both mental and physical / chemical help as soon as you can. Talk to us on here as we’ve all been through it. I’m happy to chat anytime in detail about recovery. A good thread on here is called ‘ erecting the erection - medication ‘. Have a look for it
User
Posted 15 Jun 2020 at 20:36

Nobody ever talked about ed to us or mentioned pumps or therapy. We were dispatched with a small amount of viagra each month. It worked fairly well and the problems came later on some years after radiotherapy and zoladex. No interest really. Luckily we are best friends and older so we worked our way through it to our new relationship. Obviously,We both miss that part of our life and all the emotions you feel are normal. 

We never asked about anything to do with sex and no professional asked if everything was ok in that department. I think you have to ask or talk to the nurses to share your feelings.

 

User
Posted 15 Jun 2020 at 20:42
The mental health aspects of cancer care are very much in the hands of the charity sector in this country. If you've not already done so, please do speak to the wonderful PCUK nurses on the Freephone number at the top of the page. They are very knowledgeable and helpful and should be able to answer any questions you have. Macmillan also offer a counselling service which I personally found to be really helpful.

Cancer treatment does take a huge mental toll on many people - it certainly did with me. We tend to be so focused on the physical treatment that we don't stop to think about how it's going to affect us mentally until it actually happens.

Try not to feel angry - nobody is deliberately trying to keep you in the dark about things. The NHS is very much focused on fixing the body not the mind.

Things will get better - it's very early days yet. Just get through it one day at a time.

Best wishes,

Chris

User
Posted 16 Jun 2020 at 15:56
At our hospital, every man is given the PCUK toolkit at the appointment when they are told they have prostate cancer. The excellent Macmillan leaflet about mental health & the impact of a cancer diagnosis is also freely available around the clinics and in the main oncology entrance.

Tracey, google to see whether there is a Macmillan service or Maggie's centre in your area - the support they can give is unrivalled.

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

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User
Posted 15 Jun 2020 at 20:06
Hi Tracey my story is really long but maybe worth the read as I nearly put off treatment for fear of ED aged 48. I won’t lie but this disease can destroy a man or woman or both. I’ve seen many people that this has happened to over the 5 yrs I’ve been a member. You need to know if your hubby had nerve sparing surgery or not , as the treatment path is different. Either way it’s a blo**dy long haul to get back to normal sex and you have to make the most of what you have and find other ways , whilst at the same time pushing for all the treatments and trying them all and seeing what suits you both. It isn’t game over , and if you are an understanding couple it can be lots of fun trying new stuff. An absolute MUST at around 10 weeks is a good quality vacuum pump which must be his best friend on nearly a daily basis. Can be used for daily rehab or indeed penetration with rings. If he has had nerve sparing then daily 5mg Tadalafil ( Cialis ) seems to be the gold standard for aiding recovery. I know some men have just sat in a dark room and watched their marriage crumble over this , so you must seek both mental and physical / chemical help as soon as you can. Talk to us on here as we’ve all been through it. I’m happy to chat anytime in detail about recovery. A good thread on here is called ‘ erecting the erection - medication ‘. Have a look for it
User
Posted 15 Jun 2020 at 20:36

Nobody ever talked about ed to us or mentioned pumps or therapy. We were dispatched with a small amount of viagra each month. It worked fairly well and the problems came later on some years after radiotherapy and zoladex. No interest really. Luckily we are best friends and older so we worked our way through it to our new relationship. Obviously,We both miss that part of our life and all the emotions you feel are normal. 

We never asked about anything to do with sex and no professional asked if everything was ok in that department. I think you have to ask or talk to the nurses to share your feelings.

 

User
Posted 15 Jun 2020 at 20:42
The mental health aspects of cancer care are very much in the hands of the charity sector in this country. If you've not already done so, please do speak to the wonderful PCUK nurses on the Freephone number at the top of the page. They are very knowledgeable and helpful and should be able to answer any questions you have. Macmillan also offer a counselling service which I personally found to be really helpful.

Cancer treatment does take a huge mental toll on many people - it certainly did with me. We tend to be so focused on the physical treatment that we don't stop to think about how it's going to affect us mentally until it actually happens.

Try not to feel angry - nobody is deliberately trying to keep you in the dark about things. The NHS is very much focused on fixing the body not the mind.

Things will get better - it's very early days yet. Just get through it one day at a time.

Best wishes,

Chris

User
Posted 15 Jun 2020 at 23:57

Hi Tracey, I know what you mean. First thing I want to make clear is I think the NHS is great and the following is not a complaint.

I sort of feel that the medics treat you as a slab of meat, they test you, they know what's wrong (well more or less) they look in the book and it says treat with x, y and z. They do just that and say "bye. Next please". 

I think they are not trained in people skills, but I guess I'm OK with that. It takes years to train them to slice you open, or zap you with radiation, can we afford to then train them how to be nice to people, it might be another year in medical school and we need them on the front line right away. What if they failed the "be nice to people" module? Would we say they were unemployable, and waste all their other skills. 

Can we really expect them to make an emotional connection to us? A good surgeon should be doing 100s of prostatectomies, if they connect with all their patients wouldn't they be emotionally drained by us (we are going through the worst experience of our life: they are just trying to earn enough to buy a better sports car than the other surgeons). 

So sadly I don't think the NHS can help much on the emotional, mental health side. I guess that's why we are all on this forum trying to find someone who'll listen to us.

Edited by member 15 Jun 2020 at 23:58  | Reason: Not specified

Dave

User
Posted 16 Jun 2020 at 13:25

I think that within the NHS in particular, the urologists and oncologists have a very heavy work load, so tend to keep explanations on possibilities and potential side effects to a minimum. Some men are given an explanatory booklet prior to treatment but many are not fully informed well in advance of what they may encounter. Just to take one example, I was unaware that both RT/HT and RP are likely to cause a loss in size of a man's penis. Certainly, there are other things both physical and mental that can come to light after treatment. In the circumstances, I think a patient should be given a comprehensive booklet to cover all possible eventualities well in advance of making his treatment decision. This would also afford the patient time to prepare and ask any clarification before hand but would save the consultant going over every aspect. Patients are usually allocated a specialist nurse who can provide ongoing advice post procedure and in need contact can be made with a consultant either through his/her secretary or through GP as link person. Monitoring should be done regularly as considered appropriate for the patient. Probably, any required mental support would be best arranged via the patient's GP.  Sometimes patient's are directed to forums such as this for general support.

Edited by member 16 Jun 2020 at 13:29  | Reason: Not specified

Barry
User
Posted 16 Jun 2020 at 15:56
At our hospital, every man is given the PCUK toolkit at the appointment when they are told they have prostate cancer. The excellent Macmillan leaflet about mental health & the impact of a cancer diagnosis is also freely available around the clinics and in the main oncology entrance.

Tracey, google to see whether there is a Macmillan service or Maggie's centre in your area - the support they can give is unrivalled.

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

 
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