Hi everyone, I was diagnosed with penile cancer in Jan 2018 and had glansectomy 3 months later, followed by DSNB few months after that. Unfortunately the skin graft didn't heal as planned and has caused other problems which are still around today. But cancer was removed and so far not came back.
In the spring I will get to 5 years since my first op, so the consultant has finally agreed to consider another operation to do another skin graft and try some other steps to improve things, along with helping me be able to go to the toilet properly, which I haven't been able to do up to now.
I have recently started some counselling through the nhs after going to the gp about mental health issues 12 months ago. Waiting a year for help is not good at all. The counsellor asked about what support I was offered after diagnosis and around the time of operations and this made me think about it and realise that there wasn't any. We are all going through or have gone through such an enormous thing that is so much to come to terms with and deal with and there needs to be more support available. And not only for us as individuals but also our partners, families and friends.
So I have decided that I would really like to do something more about this. I'd love to create a group to help and support each other, but also to raise awareness and do some group fundraising to ideally be able to provide professional and real lived experience help to others. I know that's what this forum is for but I think it would be good to have something penile cancer focused and not get lost in the amazing work that Macmillan do, but they cover so much and have such a big operation we are just a tiny part.
So if anyone is interested in getting involved at all please let me know and we can take things from there. Invite is open to everyone, whether you're a passed or present patient or someone you care for has been affected. Please get in touch and we can see what we can do to make a difference to other people going through this terrible experience.
Apologies for the long post, just once I started typing I couldn't stop. Thanks, Stuart
Thanks
Stuart
