Having recently received my 6 month post op ‘undetectable’ PSA result (absolutely delighted) I thought I’d share a few things I’ve learned along the way.
Friends and family
My grown up kids and wife were united in really supporting me from diagnosis to first good PSA result. However, friends were a mixed bag. Some, who I considered close friends became quite distant while some ‘periphery’ friends really stepped up, checking in regularly and offering help. I understand some people don’t really know how to respond when their friend tells them they have cancer and I’ve had to remind one or two that it’s not contagious. A revision of Christmas card list may be in order.
Catheter and pads
Emptying the catheter - ‘taking the pee’ jokes have a finite life :)
After catheter is removed and you are taking your first little walks round the block, don’t do the automatic tap on the crotch every few seconds to check for leaks. It’s not a good look and you’re not a rap artist.
Don’t ever, ever put a pad on back to front. For the uninitiated, they are sticky on one side to adhere to pants. It can easily be done in autopilot mode and trust me, you will never do it again.
Discussing the illness
I’ve found myself getting irritated by people saying things like ‘I’m sure you’ll be fine’ and ‘my friend had this and he’s okay now’ etc etc. I’m sure they mean well but unless you’ve actually walked the walk you have no idea of all the ‘stuff’ that goes with this. People just don’t know what to say. Over time, I’m much more relaxed about this and just change the subject and although not evangelical about it, I do actively encourage others to get checked if any family history. I am also happy to discuss any aspects of my situation and treatment with those that are genuinely interested and actually feel that I’ve helped a couple of people.
Be kind to yourself
Sometimes if recovery isn’t going as well as hoped, I’ve found looking for the small wins helps. It can be anything, maybe just being able to pee through the fly in your jeans for the first time after catheter removal, rather than having to remove everything. A small win in more ways than one :)
Stick up for yourself
If you are unhappy or unclear about information you are given, or find yourself waiting endlessly for information or appointments, you could try to do something about it. The lack of clarity or anxiety caused by waiting for letters or phone calls can be crippling. I’ve found it helped me to be ‘doing something’ rather than stressing so I’ve found contact details for relevant secretaries etc to chase things up. Also PALS can be useful. It doesn’t always work, but a polite enquiry can sometimes achieve a result.
Lucky or unlucky
Initially, probably like everyone I considered myself very unlucky to have cancer. As soon as this had sunk in and the treatment plan began, I realised I was in fact very lucky indeed. I had no symptoms and this was picked up on my annual blood test as PSA was slightly raised. If I hadn’t done this, I would be none the wiser until symptoms kicked in. Also, from reading the situations of some of my fellow forumites, I realise how fortunate I am….so far.
I realise that compared to many, I am still new to this so please excuse my babblings generated by the euphoria from my latest result. For me, this forum has been, and continues to be a vital connection to a fantastic bunch of people who look out for each other. Thank you.
Celebration time for the undetectable PSA and hopefully that's it as far as the cancer is concerned. I will join you with jumping up and down for your success and I bet you are going around with a big smile on your face. As you say, those who haven't walked this path don't know how the diagnosis and treatment affects you and your family but we do, along with how important it is to celebrate these successes in order to let those who follow on behind that there is hope and life beyond treatment. I love your sense of humour but you have also given some useful tips so many thanks for that.
