Hi, I have an appointment this Thursday for my TPE. My head is spinning and unsure what I should be asking. It’s not like I haven’t had other consultations re my cancer, but this one feels like my last chance.
can anyone give me a few examples of what to ask? I’ve been thru cervical treatment in ‘23. It came back last year, but due to the location I wasn’t able to wee. It was crushing my urethra. I had an emergency SPC put in last July as fluid was backing up into my kidneys, so now connected to a leg bag. The stomas I am 95% sure I can cope with. It’s the op and the future.
I’m mostly worried that it travelled again as I can feel something in my vagina. I’m in constant pain from the SPC and the scarring from the interstitial brachytherapy.
My advice? Polishing can wait, and anything else which isn’t absolutely necessary. It was the last thing on my own mind, so I found I wasn’t bothered about these minor things.
This house is Yorkshire meets Northern Scotland, so it’s a house of plain speaking and sometimes bad words! It was a bit more difficult for us when I had my surgery as I was discharged on the day the first Covid lockdown was announced so we had no help, no visitors, nothing. Even trying to get to the chemist was a major performance for my poor partner, and nurses wouldn’t turn up when they were supposed to, so things sometimes felt a bit scary in those early days. Different days now though! We just had to cope as there was no choice, but nothing I knew in advance-speaking to others in person who had been through the surgery etc-actually reflected the reality of dealing with this. But we got through.
Sarah xx
OMG. I would have freaked out. Both of us are planners… even that causes issues lol. All of that to cope with then covid, no one had a clue what they were doing. I’m so glad to hear you got thru this and been got the diagnosis you needed to hear.
i had the explority surgery yesterday. Biopsies for consultant and for the research team. They are trying to understand why if/when it reoccurs it does it in a different place. They couldn’t get to check my bladder due to the scar tissue from the last brachy treatment in my urethra. We had a chat when back in day ward. I cried with happiness as the cancer had not spread since last scan in January. It’s still going to be a TPE and we’ll discuss more at next visit but he’s aware I have done my research on valid sites and talking here. The next lot of appointments are coming thru thick and fast on their app.
The only downside yesterday was I wet the bed last night. OH picked up Tena pants… I get always..lol. He was more upset than me.
thank you for answering and being honest. While I have to ‘fluff’ things up for my job, I like it straight to the point. 
My ex was like this. Not worth the words lol. Mine knows it will be a long recovery and has opted to sleep in the spare room and turn up the ringer on his phone (don’t ask lol). I just dread what he
l do to the downstairs while I’m upstairs I’ll prob find a whole bank of computer stuff built up.. and not for gaming. God help me please
I’m a planner but that went out the window after surgery! I didn’t even have the waterproof sheet ordered…
I was using bladder pads all through radiotherapy as my bladder control was rubbish-now I don’t have a bladder it’s so much easier, unless the bag burst of course, but that’s very rare nowadays.
I’m really glad it all seems like full steam ahead for you-great that there’s been no spread which is always our greatest fear.
I won’t sugar coat anything but will give you honest answers to anything you want to ask. It’s all a huge deal, but you can get through it, and that’s the main thing. I can hardly believe sometimes
hat it was more than 5 years ago for me. It’s incredible what our bodies can go through, cope with and recover from. Sleeping in separate rooms is actually helpful…I had a little bell on the side Iould ring for help! that wasn’t hugely popular though!
Sarah xx
