Decision to make

I must admit the hot flushes, sweats etc didn't last that long first time around for me....but I also could cry for England. 

1. Steve interesting profile I just gave up working, I  had kidney problems so it just wasn't practical, ie going to the toilet so often.I am dealing with my reccurence slightly better now as I think you are any tips anybody on coping with scanxiety ?

Big Col,

I found that talking to a counsellor really helped me.  Being able to just pour your heart out feels really good.

This Prostate forum is also very good.  There's always someone who has been through what you are.  Reading other people's experiences and how they coped is a bonus.

From the day I was diagnosed in May 2021, I have been keeping a 'thought diary '.

From never knowing what I would write, I can't stop now.  Thick A5 diaries, I have just started diary number 14.

Everything , totally everything is poured out in them.  It's also good to look back to see how I was coping at different points in time.

I also attend a Prostate Cancer Support Group at my local Maggie's in Newcastle.  Once a month, that's good to share things with us all in the same boat.

Do you have a Maggie's centre near you?

Thanks I have joined a mcmillan support group...next meet. April. The demon  in me is the little bugger is inside me....what's it up to ?

Hello Big Col 

Following on from Stevecam 's post above - please find the link to Maggie's:

https://www.maggies.org/

We here at Macmillan also have counselling on offer should you need it - link here:

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

We also have the "Buddy Scheme" where we can allocate a personal buddy for you to talk to on a regular basis to run through your fears and anxiety or just a chat - again - link here:

https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/macmillan-buddies

and for "scanxiety" there's always the helpline on 0808 808 00 00 (8am to 8pm 7 days a week).

Of course there's the Community - there's always someone here to chat to who's either "been there - done that" or just a listening ear.

I was just about to add the local Macmillan link but you've joined - anything else we can do for you Big Col?

Best wishes - Brian.

Brian,

I couldn't have said it better.

No that's great and reassuring. 

Hi Big Col.

My husband has not had a nephrectomy but he does have chronic kidney failure as a result of his initial prostate diagnosis and treatment so I keep a close eye on his creatinine and eGFR. Recently there has been a decline in function so I have been looking into possible causes. From my reading I have found that certain herbs contain a substance called thujone which can result in a decline in kidney function specifically for those who have CKD. The herbs involved belong to the mint family and include sage (salvia officinalis), lemon balm (Melissa officinalis) and certain mints. The decline is seen after about 4 months of use but is also dose dependent. I have reduced hubby's sage tea to 1 cup or less a day to see if this may have been having an effect and he is due for another blood test soon so will see if it has made any difference.

Just a heads up to everyone to check with their doctor before taking anything, even if it is supposed to be 'healthy' if they have CKD.

Hi David,

I'm a week in now with the Bicalutamide. Not feeling any significant changes just yet but these are very early days. It is, however, always in the back of my mind.....are the tablets working?

How are you going on......being two weeks in now, I think

Cheers 

John

Hi John 

I'm back on bicalutomide. This time around I think  I'm on a bigger dose.I  feel a bit tired...First time around I had night sweats ....they didn't last .Yes it does work so don't worry....be guided by your team.Like the rest of us pc is a rollercoaster.