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Bazza - the end is near

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User
Posted 23 May 2019 at 10:56

Looking like I might come off this forum. Very few people left who I know and I don’t get so many replies these days although I always try and help newbies where I can.

this stent placed in my kidney last October has done its job well but now, I’m finding myself peeing blood, quite a lot some times, others none at all. I feel pressure and stinging pain in the penis and my French “experts” say no need for a cystoscopy to check for urethral damage or the cause as they at sure it’s the stent.

likewise, I’ve been having really bad night sweats four weeks post final chemo session with raised temperatures which quickly return to normal. I email my French “onco” only to get the reply, “Thank you for letting me know!”

im exasperated with a system that professes to be among the best in the world yet seems to me compared to the UK for all its faults, third world. My fear factor and anxiety is worse than ever because of the language barrier and bureaucracy. I cannot find a true urological oncologist, just an overworked general one for whom I have had to teach the current drugs and regimens in prostate cancer treatment and there is no help or support for myself or my wife at all, no equivalent MacMillan or anything. You just go to bed at night 50 mins from the nearest A&E manned by two people fearing if anything should happen to you.

i am now at the stage where I’m thinking that I want this disease to take me quickly and take me now. There is nothing, no one and nobody within two hour’s drive who can possibly help. All I will say is never ever get prostate cancer in France and if you do, hurry back home. I will never hear a bad word said about the NHS. 

User
Posted 23 May 2019 at 11:52
Dear Bazza,

I don’t post often, as I’ve often little to say. I read regularly,and on occasions feel I can post with some worth or ask questions. Your honesty and raw pain has helped many of us, reality is sometimes sugar coated and blindly covered. This little poem has helped me through many times, and today it’s for you.

My husband is Gleason 9 Tb3, he’s had rough times, painful times ,times of joy, laughter happiness and peace. Personal grief from people we loved, and people’s failure to understand this awful bloody disease.

Sadly the British system let him down badly, he was misdiagnosed for three years. We have plans, fears, tears and justifiable anger at times too.

It’s not just what you’re born with

But what you choose to bear

It’s not how large your share is

But how much you can share

It’s not the fights you dream of

But the ones you really fought

It’s not just what you’re given

But what you do with what you’ve got.

Si Kahn American singer song writer.

Leila

User
Posted 23 May 2019 at 13:51
Some of us from some years back are still here Barry and still rooting for you.

Tomorrow is another day and hopefully one where you are feeling better in yourself

Take care

Bri

User
Posted 23 May 2019 at 13:55

Has anyone used or heard of the Budwig Centre

User
Posted 23 May 2019 at 15:12

Yes, allegedly research based alternative treatments. Memorial Sloane Kettering centre has looked at the so called treatments and devote a page of their website to warning of the risks / lack of evidence.

Edited by member 24 May 2019 at 01:58  | Reason: typo

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

User
Posted 23 May 2019 at 15:15

Hi Bazza, there are I am sure more people here who know your history that you would think. 

Like you I don’t post so much but I read most threads every day and occasionally jump in with my 10 pence worth.

Many old and new who read your words will find them both a comfort at times and a wake up call on others so don’t stop posting as you never k is what one line may make a difference to others. Similarly for your own benefit you don’t know when someone may give you a pearl of wisdom even if right now you feel it’s unlikely.

10 years is amazing and that is worth reminding people like me about as I am only 4.5

take care, I and many others are rooting for you 

kev

 

Dream like you have forever, live like you only have today Avatar is me doing the 600 mile Camino de Santiago May 2019

User
Posted 23 May 2019 at 15:24

I have always read your posts with interest and empathy Bazza.

As Kev has said there are likely more people on the forum who know you and read your posts and are rooting for you. Me included.

I am only 4 years post diagnosis, your 10 years post diagnosis is an inspiration but you are still relatively young and I hope you are around for a while yet.

 

Ido4

User
Posted 23 May 2019 at 18:18
Hi Bazza

I always read your posts and like you Tony has just finished chemo. Tony is quite well at the moment although his haemoglobin is very low at 85%. Tony saw onlcology nurse today and he is now going to start arbiterone on the 11th june if his bloods are ok. He has been told he will be on these until they stop working or he has bad side affects. Please don't leave as I like to read your posts as you are on a similar journey to Tony and you make good reading. I hope you manage to get something sorted in France. all the best to you.

regards Barbara x

ps 13 bloody years for tony.

User
Posted 23 May 2019 at 19:04
Bazza

Sorry to hear you are having a rough time.

Where are you in France?

PP

User
Posted 23 May 2019 at 22:19

Hi Bazza
i am sorry that things are so hard for you and we are very thankful for the nhs in the uk.
I don't post detail of my oh's journey with pc but he is 8.5 years since diagnosis. He has had several forms of treatment and has been on zytiga for the last 18 months. Following more scans he has been told he has stable disease and despite a rising psa he is ok to stay on this treatment for the time being. 
One of the hard things is planning all your life around hospital appointments, fitting short breaks between the monthly visits and blood checks.
It is good that so many men have survived for so long with the help of all these different forms of treatment but I think not everyone is prepared for the damage some cause that is not always apparent straight away.I don't know how you feel but my guy worries a lot about how it affects me but we have always acted like a team in everything we have done and I am thankful he is still here. Stay strong Bazza - you have come this far and are loved so good luck for the future.

Edited by member 24 May 2019 at 21:27  | Reason: Not specified

User
Posted 23 May 2019 at 22:25
If treatment is so poor in France, Bazza, might it be worth considering moving back to the UK?

Best wishes,

Chris

User
Posted 23 May 2019 at 23:10
I can’t believe you are at the end yet Bazza but, ever practical, have you checked out the legal position if you die in France? Have you made provision for your family and your new wife? Could there be war after you are gone?

It might not be such a bad idea to come back to the UK, even if just to see an onco for an opinion and / or for legal stuff to be sorted out.

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

User
Posted 24 May 2019 at 05:34

Not an option. My wife was living here for 12 years before I came

User
Posted 24 May 2019 at 06:26
I’ve been away Bazza, only to return and here my own fate soon. I’ve always rooted for you but myself post less and less. That’s the transient nature of forums. I’d get home and roll through A and E’s doors ...... hospital tourism is all the rage I hear
User
Posted 24 May 2019 at 07:14
Bazza

Got your PM but your inbox is full so I could not reply. Reason I asked is that I know someone on a US PCA forum who lives in France but not a native. I can ask him what he has learnt about dealing with their system and let you know.

Regarding moving back it is your choice but have you talked it through with your partner or are you just assuring? Is she fully aware of your struggles? It’s easy to lose sight of such questions in the trenches.

Stay strong. We are all rooting for you.

User
Posted 24 May 2019 at 08:11

Originally Posted by: Online Community Member

Not an option. My wife was living here for 12 years before I came

Getting married didn't remove your passport. You can pop over here for a couple of days without everything crashing around you. 

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

User
Posted 24 May 2019 at 12:08
Hi Bazza,

Many of us know your story through your postings but cannot find the right words to respond or just repeat in another way what others have already said. But please keep in touch and of course we all hope that you can still have some quality time.

Barry
User
Posted 24 May 2019 at 16:12

Bazza, can’t pretend to understand your feelings or situation and no one can tell you what to do. But I know you’ve been through the mill. I read all your posts with interest and they do help us all to get a feeling for other people’s journeys.

I hope you find a way through this latest setback. You would be surprised I am sure at how many are on here rooting for you to come through fighting, as you always have done . You’ve always been so honest and open with your feelings on here and it’s much appreciated.

I remember your story of how you got to France and married your long lost love. 

Hoping that love story can continue for many years to come.

Good luck ,

Phil

User
Posted 24 May 2019 at 18:32

Yes Lyn, but both my girls hate me for what I did to their mother. I accept that. But I also must remember I met my current wife first in 1982. Back then we were too young but despite the wretchedness of how I feel now, I wouldn’t want to be anywhere else but the caring arms of my darling wife. I am blessed. I had two wives during this cancer and both were the most caring, kind human individuals I’ve ever known. 

User
Posted 24 May 2019 at 19:50

Stay strong Bazzacus!

Flexi

User
Posted 24 May 2019 at 20:59

Bazza I know how you feel , I still follow you , stay strong 

Barry

 
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