Hi there. I’m Veeanna. I was diagnosed with cervical stage 3 cancer in January 2024. I was treated with radiotherapy, which reduced the cancer, but it began to regrow aggressively in Jan 2025. I was told there was nothing for me except palliative care. So for 3 weeks I lived with the knowledge that I’d be dead within about 2 years. Then my oncologist decided to tell me that possibly I could have a complete pelvic exenteration . I did. I now have a stoma and no bowel. I’m also incontinent as my bladder was damaged during the exenteration. At the moment I’m in a wheelchair as I found recovery very hard going after the op, but I’m weight training and boxing and getting stronger. I’m now retired ( I was self employed). I’m “well”, but do live with huge anxiety about the cancer returning…..and thought it would be good to join this forum and talk to others who may have been, or are on a similar cancer journey …I’d just like to feel less alone in all this…..
Hi GOLDENGIRL39 Veeanna and welcome to our group
There are a few of us in the group who’ve had the surgery, but not many, so I’m pleased you have joined us!
I had a total pelvic exenteration nearly 6 years ago, so I’m in a slightly different situation having had both my rectum and bladder removed, so I have 2 stomas, rather than having the anterior exenteration and only having a colostomy.
I’m sorry to read you had bladder damage during your surgery-incontinence must be very difficult to live with. My cancer had spread over my bladder, so I always knew I would lose it, but I asked for my rectum to be removed in the surgery although it wasn’t affected by cancer at all-simply to try to reduce the chance of recurrence.
I think this helped me mentally in the way that I don’t spend time worrying about recurrence these days-not because I don’t think it can’t happen, but from knowing I’ve done all I can to reduce my risk. Since I’ve passed 5 years with no recurrence, my consultant considers me cured, which helps!
It sounds like you’ve done well in terms of getting stronger-this surgery does take a very long time to recover from and as you will appreciate, the recovery can be very tough! I have lost my mobility in the years since my surgery due to severe osteoarthritis, not cancer, so I am also in a wheelchair, though I can get around my house on two walking sticks..very slowly!
I hope you don’t feel so alone now you’ve joined us, and I’m around in the community every day-always happy to have a chat. We also have a separate support group in the community for anyone living with a stoma, so you may want to have a look at that - please feel free to join that group if you’d like, in addition to this one, and introduce yourself there. This is the link
You’ll find lots of tips and advice there, and might be able to share some of your own experiences to help others. It’s good to have you with us, and I hope you’ll enjoy being part of the Macmillan Community.
Sarah xx
