My husband's prostate journey

Hello MillieM 

Thanks for the credit  

MillieM said:

Brian, thank you for your comment,

but it was actually BW .

I know you are shall we say "upset" at your husbands treatment and once everything has settled down and he's on his treatment path I do have plenty of resources to use to help you with your complaint - I thank you for keeping any names or hospitals out of your posts - it must be hard not to name names but please keep using "the NHS."

Thanks - and best wishes - Brian.

Hi MillieM,

Thank you for the reply, I does sound like you are a step ahead with your experience which is more than a lot of us at the beginning of the tests,  it sounds like you have all the information at hand and you clearly know what should be expected from the system. It's a shame that your husband hasn't been properly supported with your hospital and there's been no proper information about why he's taking HT, hopefully now things will change and you will be able to have a meeting with someone ASAP. My partner and I felt very much on our own when he first had his PSA and was going through the tests, we actually asked our GP to prescribe HT which he did, we felt the tests weren't going fast enough and no-one was offering hormone treatment, so we were coming at it from a different place to you. I wanted this drug very much and pushed for it very early because as far as I was concerned I didn't want his PSA doubling while we waited. Sadly this seems to be the problem with different hospitals and the wait times and initial diagnosis, It's just feels too slow and random. Your husband is lucky to have your support as it's a very difficult time. My partner was in complete denial also, because it's just too much to take in as you know.  I hope things go well for you both. All our journeys are different here, but we are here to support you as best as we can. Take care.

L 

Hi MillieM,

I have just read your latest post and I am so very sorry for all the tangle and the situation both of you are currently in. This is so very hard and we all know it because we are there. All the wonderful people on this community here writing to you from their experiences and their heart. I cannot add much just to say that a lot of anger coming through your post and I totally understand that. Our experience with this bast..d PC started 6 months ago and we were angry. That first evening after diagnosis we blamed everyone. We blamed the urologist that only 6 months earlier dismissed the request for MRI and feed Jacob with fenesteride reassuring us that there is no cancer. We blamed ourselves for not going private for MRi, I blamed myself and Jacob blamed himself.  The morning after, we made a packed decision to forget the ifs and buts and to look forward. To let the anger go. It was not easy. Jacob has a terminal PC but we are in focus on the treatment and the life here and now. Millie, we are not angry anymore and believe me we are not angles. We are not angry because it does not help - the anger. 

Just to finish off: Our life are almost normal now, Jacob at the moment working in the garden after spending the morning in the pool and the gym. This is all possible because we let the anger and the blame game go away.You can read his full profile by clicking on it.

I wish you all the best and send you a virtual hug

Lots of love

Dafna

Hi Dafna,

Thank you for your comment, I am so sorry to read your news......there is nothing I can say that will comfort you....and you are correct, anger really solves nothing, but it is all part of the grieving process and something we all have to pass through some time in our lives. Fortunately, my husband is not angry and me, well I am frustrated not angry, I am totally bewildered because it has now been almost 3 weeks since my husband presented in A&E with urine retention and though I understand the need to wait between PSA tests, there was no excuse for the way he has been treated. My husband turned up for an appointment that had been cancelled by his consultant and he had not been informed, He has had 5 blood tests, a catheter fitted for almost 3 weeks and the worst part, he has been prescribed Bicalutamide without even having been diagnosed with cancer or given any test results at all!!!!.I say that because a nurse writing out a prescription at the behest of a Urology consultant with no explanation of why the medication has been prescribed does not constitute a  diagnosis. So, no we are not angry we are bewildered how that can happen whe NICE state that no drug should be administered without a clear diagnostic reason. To be truthful my husband is in denial so currently, he doesn't know or care why he is taking Bicalutamide, because no one has told him he has cancer........and.all I want is an explanation why my husband  was traipsed around Warwick hospital for a cancelled appointment and prescribe drugs without a valid reason. That is not a statement made out of anger, that is made out of pure concern and comes from someone who knows how the system should work!!!!

I think everyone reading my posts will probably think I am angry, but I am not, my tone is purely driven by my profession and being more used to writing and marking scientific papers than comments on forums. So please forgive me......Furthermore, I am, somewhat, a peoples advocate, that is what lights my fire and drives my spirit to right wrongs. Especially in healthcare and education

I actually joined this group to give me a little perspective on what is happening to my husband mentally, and what may come, more so than understanding what is going on in his body, because I know that only too well and that is what makes me quite sad, he doesn't know what is happening to him and he doesn't want to until someone says the big C. My point is, he should not have been given the meds without a diagnosis being given at the same time.....that is absolutely not best practise and definitely not evidence based for best outcome.

My apologies, I do get a little caught up in my advocacy, however, sometimes, we have to speak up for other people........as I am sure you understand...

Once again, many thanks for your comment, I wish you both a peaceful, happy life....

Warm Regards,

Millie

I so appreciate your comment and your candour.....I hope you partner is well, I'm sorry you did not mention his prognosis or recovery, I am hoping it is positive. Yes, men seem to be forgotten and pushed around, perhaps it is because for so many healthcare professionals PC is deemed treatable. I have no idea,all I see is a silent curse that is so invasive and life changing, yet so underfunded. It seems like there is no actual protocol for PC.....I know that is not true, but so many people have so many different experiences and timelines for what is essentially the same disease. I am not suggesting all PC is the same, I am saying, as in my husbands case, the cart before the horse, but the diagnosis must come first....it has to or there are the implications from taking drugs that cause serious harm. In some hospitals PC treatment seems to be treated under the guise of 'headless chicken syndrome.' I'm sure there are excellent  NHS facilities out there, but generally there appears to be disjointed care for men for sure that should not occur.

I just cannot believe what I have been reading and witnessed. It is just amazing to read accounts from people with  positive care and outcomes.

Warm Regards,

Millie. 

Hi  MM

Just a thought but start a new thread giving all the relevant stats for your hubbies prostate problem and that may help u get some helpful advice , I think the only point I have seen regarding this is that they have started him on HT without any scans etc, sorry if I'm reading it wrong 

Steve 

Hello  Millie ( MillieM ).

I have been on this forum for almost 2.5 years and a Community Champion (trained Macmillan Volunteer) for 7 months and have seen almost everything. 

There are issues within the NHS - Waiting lists, we almost always come under urology and oncology sometimes they don't talk to one another, other times they fight for business.- treatments vary from hospital to hospital and not every hospital offers every treatment.

Even though there is a clear cancer pathway it's not followed - the problem exasperates when the diagnostic process starts because 90% of us men don't want to know (think loss of dignity) and we need help from our partner to understand the process (partner needs to learn all about Prostate Cancer). At point of diagnosis it's left to the patient and his partner to try and understand what's been said.

The delays then start and the poor cancer patient and his family have then to learn how to advocate for themselves and push their way through the system. It shouldn't be like that but it is.

If you click on my avatar and read my journey, you will see that both my Urology department and Oncology department both offered to help me with the complaints procedure

Welcome to our world!!

Best wishes - Brian.

Hi Millie.

I think I get where you are coming from. I have also been an advocate for the underdog - I actually spent 5 years fighting the DWP and managed to help get the law changed so that disabled people could take their disability benefits with them when they moved to a different European country, provided the UK remained the competent state. This was relevant to us as we moved to Greece and I felt it was an injustice that disabled people should lose all their benefits when they stepped off UK shores. I also volunteered when I lived in the UK helping people get disability benefits plus supported them through the appeals process. Yes, it is rewarding helping those through the quagmire and fighting the system when there is obvious injustice or incompetence. Unfortunately too many people lose out because they believe what those administering the system tell, or do not tell them. In your situation, when you finally get face to face with the oncologist, I would politely point out the fact that you were not told of the presumptive cancer diagnosis or why the associated initial treatment was given, and that hopefully in future she will change things to ensure that this doesn't happen to others. Very often it is ignorance of the effects of their actions or inaction that has prompted the behaviour in the first place. The thing to do is to move forward and lay down the ground rules of how you are going to work together in the future to get the best treatment for your husband. Provided your husband is happy with you advocating for him then carry on. This is very much a couples disease. 

You state that you have come on to the forum to try and understand your husband's thoughts. His denial until actually told that he has cancer I think demonstrates that many men have the attitude that, in a sense, what will be will be, so they just get on with it. It is us women who are the nurturers and the worriers. What many men do find is that the hormone therapy can change them mentally, becoming more emotional, sometimes anxious, and occasionally depressed. For some men the cancer diagnosis and treatment has, in their words, made them more tolerant and empathetic.

Hi Alwayshope, BarryW and MillieM, cancer treatment has made me "a simple male" more empathetic, emotional, tearful and unfortunately thanks to CRCC I have memory issues too, so can you please make your posts shorter so by the time i have read to the end of your posts, i can still remember the beginning, take bare.

Eddie

Hahahahaha! there's nothing simple about you.