It’s helpful for me to read your posts as my partner has Prostate Cancer ( and my cousin )
By the time my partner was diagnosed the Cancer had already spread to his seminal vesicles.
He is now on 2 types of hormones; a 3 monthly injection in his stomach and daily Enzalutamide tablets.
He also had a catheter for way too long ( but that’s another story ) but quite recently had a TURP operation, which went really well; much better in actual fact than he’d expected.
I just want to thank you, and to say I think it’s great that you are writing about this here, as you say, it’s far cheaper than therapy.
I think it’s so important to feel witnessed; to feel seen, heard and understood, and although I have friends & family that are sympathetic to mine and my partners situation, they can’t really relate and it can feel quite a lonely path to travel ( and I’m not the one with the fucking Cancer !!!!!!! )
Hey Lee...thanks for reading and reaching out! It is some hard shit to deal with isn't it, my wife goes through every emotion with me whilst we are dealing with this and it can often be underestimated that actual impact it has on her as well. Friends and family sympathy is great (if honest, I would much prefer a packet of Jammie Dodgers then the sympathy) but if they have not experienced it first hand it is very hard to truly relate and support emotionally, we get it totally. Keep strong Lee and sending some good energy 🫶 to your partner (what's his name btw?) and cousin in kicking the arse out of this unwanted squatter they call cancer!
I think one of the hardest things to deal/cope/live with, through this new, rather unwanted, chapter in our story, is the uncertainty.
I/We seem to be doing ok ( most of the time ) with the practicalities; the Doctors appts, the scheduling your life around those and picking up prescriptions etc etc etc.
It’s the not knowing ness of the whole thing that is the most difficult part, for me anyway.
You two keep strong too, and thanks again for writing about it, it’s something I have been contemplating …… we shall see.
Ooh yes, the uncertainty. If I can pass anything on, it is try not to wait for the next round of results/scans/bloods, it really does get all of the energy. Instead, go grab the credit card and go do something that you both have always wanted to do together (Of course I do not advocate reckless spending, actually I lie...I do totally!). The waiting can wait just once a while. Mark 🫶
P.S. You totally should write about your experiences, it will help others in your position...shout if I can do anything to help with that 👍🏻
Hey Lee - I totally feel you here, it is such a lonely path to travel (and I'm not the one with fucking cancer either) - the more we talk about it though and share these stories, the less alone it feels - sending you and your partner all the good vibes x
You write so well; you feel like family; I wish you the very best of outcomes with all this. And you are SO right about pelvic floor exercises. I had a uterine prolapse in my final pregnancy; gynaecologist said pelvic floor exercises useless; GP said ignore him and DO THEM. And golly it was hard - could not initially get said traumatised floor to twitch by so much as a micron... But slowly, slowly, I got there; and was let off the reconstructive surgery. Strength and honour!
Thank you, I have found that writing these supports the mental health part of me! It is so my therapy 😉 So very true...they are hard to get right and persistence is the key! It is these things that help with the overall recovery. Small wins 🫶
Oh Anne, I can empathise on the uterine prolapse - opted for surgery and wish I had taken the time over the pelvic floor exercises. No word of a lie, Mark puts me to total shame in this regard!
Did you have hormone therapy before or after the surgery?
Just had the injection on Monday, no hot flushes yet (unlike last time). I’m thinking it’s either too early or it’s because I don’t have a prostate to put a fight. Time will tell.
Hey...it was about 8 months after surgery due to PSA heading back up the scale. Those injections are a little sharp as well aren't they, I bloody hate needles (I might have mentioned it once or twice 😆). It took a while for the flushes to fully kick in for me, you have my full empathy! Stay strong (and cool when needed!)
Love your humour, Mark. Surgery, penis pumps and boobs with facts that don't titillate (another pun intended). What a lovely pair of buns! ;-) This is such a great way to share the realities. have you measured cup size, are you still on HRT? FYI Handheld fans/battery operated ones are useful - fans for the flushes, I mean!!!
Can I suggest using your phone to record your doctor during appointments if Louise or a friend can't be with you? It saves your energy to write/note and process to ask questions. Talk to text is even better! (ohhh must add that to my hacks list on Carer Mentor).
Cheers Victoria...titilate 😆 that is a word not heard in a while (I am going to use that the next time I am in a queue at the supermarket just for fun!). Good point about the fan, I never even considered that as an option! D'oh! Phone...yes, good one!
When worn the retained water in the crystal gel evaporates and draws away body heat from the carotid arteries. I know it sounds hicky, but it works! Recommended by another carer on the Carers UK forum - best source for ideas!
YUP that's why I started a caregiving hacks list for everyone...you don't know what you don't know..PLUS there is waaaaay too much stuff tsunami-ing us - welcome to community-networking-support ;-)
P.S don't steal Louise's bras. You'll have to tell us what she gets you for Valentines! (too soon for boob jokes?)
It's helping a lot to understand what happens as is never really explained in a straight forward way, as so much is missed or forgotten or not spoken about.
Hey Grim...isn't it just! Just the medical stuff is enough to fry the old grey cells and then to try and manage the emotional element, it can certainly easily overwhelm. Thanks for reading, it means a great deal. Kind regards Mark.
Hi Mark,
It’s helpful for me to read your posts as my partner has Prostate Cancer ( and my cousin )
By the time my partner was diagnosed the Cancer had already spread to his seminal vesicles.
He is now on 2 types of hormones; a 3 monthly injection in his stomach and daily Enzalutamide tablets.
He also had a catheter for way too long ( but that’s another story ) but quite recently had a TURP operation, which went really well; much better in actual fact than he’d expected.
I just want to thank you, and to say I think it’s great that you are writing about this here, as you say, it’s far cheaper than therapy.
I think it’s so important to feel witnessed; to feel seen, heard and understood, and although I have friends & family that are sympathetic to mine and my partners situation, they can’t really relate and it can feel quite a lonely path to travel ( and I’m not the one with the fucking Cancer !!!!!!! )
Thank you,
Lee
Hey Lee...thanks for reading and reaching out! It is some hard shit to deal with isn't it, my wife goes through every emotion with me whilst we are dealing with this and it can often be underestimated that actual impact it has on her as well. Friends and family sympathy is great (if honest, I would much prefer a packet of Jammie Dodgers then the sympathy) but if they have not experienced it first hand it is very hard to truly relate and support emotionally, we get it totally. Keep strong Lee and sending some good energy 🫶 to your partner (what's his name btw?) and cousin in kicking the arse out of this unwanted squatter they call cancer!
Hi Mark,
Thanks.
My partners name is Tim.
I think one of the hardest things to deal/cope/live with, through this new, rather unwanted, chapter in our story, is the uncertainty.
I/We seem to be doing ok ( most of the time ) with the practicalities; the Doctors appts, the scheduling your life around those and picking up prescriptions etc etc etc.
It’s the not knowing ness of the whole thing that is the most difficult part, for me anyway.
You two keep strong too, and thanks again for writing about it, it’s something I have been contemplating …… we shall see.
Take good care of each other.
Lee x
Hey Lee - Hey Tim 👋🏻
Ooh yes, the uncertainty. If I can pass anything on, it is try not to wait for the next round of results/scans/bloods, it really does get all of the energy. Instead, go grab the credit card and go do something that you both have always wanted to do together (Of course I do not advocate reckless spending, actually I lie...I do totally!). The waiting can wait just once a while. Mark 🫶
P.S. You totally should write about your experiences, it will help others in your position...shout if I can do anything to help with that 👍🏻
Hey Lee - I totally feel you here, it is such a lonely path to travel (and I'm not the one with fucking cancer either) - the more we talk about it though and share these stories, the less alone it feels - sending you and your partner all the good vibes x
Hi Louise,
Thank you, and it feels good to connect.
x
https://prostatecanceruk.org/prostate-information-and-support/treatments/cryotherapy
You write so well; you feel like family; I wish you the very best of outcomes with all this. And you are SO right about pelvic floor exercises. I had a uterine prolapse in my final pregnancy; gynaecologist said pelvic floor exercises useless; GP said ignore him and DO THEM. And golly it was hard - could not initially get said traumatised floor to twitch by so much as a micron... But slowly, slowly, I got there; and was let off the reconstructive surgery. Strength and honour!
Thank you, I have found that writing these supports the mental health part of me! It is so my therapy 😉 So very true...they are hard to get right and persistence is the key! It is these things that help with the overall recovery. Small wins 🫶
Oh Anne, I can empathise on the uterine prolapse - opted for surgery and wish I had taken the time over the pelvic floor exercises. No word of a lie, Mark puts me to total shame in this regard!
Did you have hormone therapy before or after the surgery?
Just had the injection on Monday, no hot flushes yet (unlike last time). I’m thinking it’s either too early or it’s because I don’t have a prostate to put a fight. Time will tell.
Good luck!
Hey...it was about 8 months after surgery due to PSA heading back up the scale. Those injections are a little sharp as well aren't they, I bloody hate needles (I might have mentioned it once or twice 😆). It took a while for the flushes to fully kick in for me, you have my full empathy! Stay strong (and cool when needed!)
Love your humour, Mark. Surgery, penis pumps and boobs with facts that don't titillate (another pun intended). What a lovely pair of buns! ;-) This is such a great way to share the realities. have you measured cup size, are you still on HRT? FYI Handheld fans/battery operated ones are useful - fans for the flushes, I mean!!!
Can I suggest using your phone to record your doctor during appointments if Louise or a friend can't be with you? It saves your energy to write/note and process to ask questions. Talk to text is even better! (ohhh must add that to my hacks list on Carer Mentor).
Cheers Victoria...titilate 😆 that is a word not heard in a while (I am going to use that the next time I am in a queue at the supermarket just for fun!). Good point about the fan, I never even considered that as an option! D'oh! Phone...yes, good one!
Also, I used this one hot summer for mum: https://www.amazon.co.uk/gp/product/B00XEFVGS8/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1
When worn the retained water in the crystal gel evaporates and draws away body heat from the carotid arteries. I know it sounds hicky, but it works! Recommended by another carer on the Carers UK forum - best source for ideas!
YUP that's why I started a caregiving hacks list for everyone...you don't know what you don't know..PLUS there is waaaaay too much stuff tsunami-ing us - welcome to community-networking-support ;-)
P.S don't steal Louise's bras. You'll have to tell us what she gets you for Valentines! (too soon for boob jokes?)
Thanks for sharing your story Mark.
It's helping a lot to understand what happens as is never really explained in a straight forward way, as so much is missed or forgotten or not spoken about.
Thank you.
Hey Grim...isn't it just! Just the medical stuff is enough to fry the old grey cells and then to try and manage the emotional element, it can certainly easily overwhelm. Thanks for reading, it means a great deal. Kind regards Mark.
I had cryotherapy.
Do you mind me asking? Did they say why they used that treatment?
Quick question: Were you offered cryotherapy?
Hey Bill - No, Chemo was not an option at the time.
No, not chemotherapy…cryotherapy: https://prostatecanceruk.org/prostate-information-and-support/treatments/cryotherapy