In denial?

Oh boy Papillon1 , a warm welcome and do I recognise that feeling of the weight of it all but what is the alternative. I have been on the stage 4 journey with my husband for 4+ years but have been my husband's carer since he had a complete mental breakdown in 1997. The one thing you have to make sure is that you keep up with your own interests in order to maintain your own sanity, plus make sure that you look after yourself as well.

I am a little confused about the stage 4 but confined to the prostate. Do you have a Gleason, TNM and initial PSA plus why you think it is stage 4. Is there any particular issues the hormone therapy is causing and maybe we can help you with some suggestions. 

I’ve got that wrong, I’m sorry!. His psa was 120 which meant he had an aggressive form of the disease but they couldn’t detect any spread so far.

He has haemorrhoids and I think the radiotherapy has made it worse. 
Thank you for understanding my issue. It helps to know I’m not alone 

Hello and welcome,

I am only just starting on the hormone therapy with the radiotherapy to follow later, so there is little practical that I can add.

However, with a different hat on based on earlier experience, I really underline the comment from Alwayshope. You need to look after yourself. Some 'me time' is vital, so please do look after yourself in that regard.

I can identify with the difficulty getting information. That is a current problem for me. The NHS may well be brilliant, but communication is often very poor. I think that is where the experts here at Macmillan can really help.

Best wishes

David

Hello again. The radiotherapy can cause problems with both the bowels and the bladder, not only at the time of radiotherapy but also long term. I have no personal experience with how to deal with these issues apart from the constipation that can also be caused by the Hormone therapy. I hope others will be along if they have any personal information. Macmillan have produced a help sheet but I don't know if it is of any help.

https://www.macmillan.org.uk/cancer-information-and-support/treatment/types-of-treatment/radiotherapy/pelvic-radiotherapy/bowel-problems-after-pelvic-radiotherapy

What I would also suggest is that you phone the Macmillan helpline if you need guidance on dealing with the bowels but they also have resources if you need help mentally.

0808 808 00 00

This forum is a good place to let off steam, we understand that this is very much a couples disease and very often it is the partner who has to deal with the organisation as well as the change in our partners both physically and mentally. Please ask whatever questions you want or just come on for a chat.

Hello Papillon,

In my personal opinion, I think it's harder for a partner to deal with an illness in their loved one, especially so where they are having to take responsibility for managing everything.

I only found out my husband had been struggling after I was diagnosed with PC as he kept his own thoughts & fears to himself whilst remaining a tower of strength towards me.  He sought help from Macmillan & arranged a meeting with one of their advisors to talk about his fears & concerns & felt so much better & in control of his thoughts afterwards, & I know that he would heartily recommend it as an avenue to explore.

You haven't said how old your husband is or if he was taking any responsibility for his own recovery from his broken hip before the PC diagnosis.  

As others have said, it's important that you look after yourself & make some 'me' time doing the things you like (even if it's as simple as meeting up with friends for coffee) so that you can have the energy to manage.

Sending you a big virtual hug.

Best Wishes

Brian

Hi !

It could be very good if you try to summarize all the facts regarding your husbands staging because you mention that he is Stage 4 but then still confined in the prostate which is not really possible with stage 4. You also mention aggressive form which probably mean a Gleason of 4+4 or more and the PSA is 120 if read you correctly which they hopefully did a PSMA Pet Scan to confirm no spread outside prostate.

Well I suppose he is talking about at least 3 years of hormone therapy and the good thing is that you say that the PSA is under the ’norm’. It could be good thing to give a hint what under the norm is in actual figures.

3 years of hormone can be a loooong time, loosing muscle mass, gaining fat, loosing bone, adding risk of diabetes and also heart conditions and the key to minimizing risks is lots of different types of excercise, eating a well balanced diet, sleep and rest is important and there are also some good supplements to use. Lots of people think of sexual functions even if hormone therapy is a real killer when it comes to Libido. So ’penile rehab’ is also a very good thing to work with.

In short, it’s not helpful at all if your husband don’t commit himself because you can support him but not do his own input on this journey and, the more he commits often the better results with for example side effects.

Best wishes - Ulf

Thank you so much for your response. As I said I made a mistake with the Stage 4. Apologies.  He had an aggressive cancer but the consultant said after exhaustive tests that they couldn’t find any spread so it seems it is contained within the prostrate, atm anyway. Since his radiotherapy his PSA has gone from 120 to below normal. Unfortunately the diagnoses and radiotherapy have hindered his recovery from his hip replacement so progress in that area is slow. They have detected other health issues one being arthritis but my main concern is that he’s not interested in his own health issues. He’s always been very positive but I wonder whether he’s in denial.

Sorry I made a mistake with the grading. Yes he had a Gleason reading of over 4+4 and his PSA was 120. I find the readings can be a bit confusing! But after extensive scans and a pet scan they could find no spread thankfully so far. His PSA now after radiotherapy had fallen quite dramatically to below normal.But my main concern is his lack of interest in his health issues. I think the impact of having three traumatic falls before his hip replacement and the discovery of prostrate cancer may have affected his confidence but then again he’s always been extremely positive or appears so. I’m just trying hard to get the best help for him but it can be very frustrating we hee e n he won’t admit he’s having problems.

Thank you so much David. You are right in that I’ve had more constructive help from MacMillan nurses. I’m glad I’ve found this forum.

Now this confuses me because his friend had the  same diagnoses and a high PSA and he was told there must be a spread so I’ve been told that they couldn’t find one so now I don’t know who to believe!