Hello, Im new here and never actually posted on a forum before. I have advanced cervical cancer and have recently spent 3 months in hospital after my bladder ruptured. Surgery was unsuccessful and so I now have 2 permanent nephrostomies and a catheter in place. Ive had little to no info on how to live with these. Now I am home the district nurse comes to change the dressings and bags once a week, but im struggling with pain in one of them. The tubes seem precarious, easy to catch and pull. Im terrified of them coming out.
Id love to chat with anyone else with nephrostomies, share advice on how to adjust, manage pain etc.
Thank you
Caroline
Good morning Caroline.
Sorry I’m an ileostomy so I can’t advice. Just wanted to say hello and hope that you get some advice.
You’ve really been through it.
Ann
Hello Caroline
I also had advanced cervical cancer, so I sympathise greatly with what you’re going through. I was lucky enough to be offered a total pelvic exenteration so have 2 stomas rather than nephrostomies, which seem to me to be harder to deal with. I’m so sorry I don’t have any advice on dealing with them, but something I hear from other ladies is that they too are given very little information about them.
I was referred to a urology consultant prior to the removal of my bladder, and as part of that referral was given the details for, and met with, the clinical nurse specialist for urology. Do you have such a contact? I’m sure they would be able to give you advice, and if you don’t, perhaps your cervical cancer nurse could put you in touch or offer advice? I understand the tubing can be very difficult to deal with, and easily snags on things so appreciate this must be very difficult for you. Along with the pain, you really need to have advice from a professional. I cannot understand why we are not provided with more guidance on these life changing procedures, but hope you are able to access some help. xx
Hi Caroline
I say I was lucky because the surgery is not always possible and as you will know, only available when there is no spread outside the pelvis. It is scary surgery as it’s so huge and life changing, but when it’s your only option, you want to grab the opportunity! There is usually only a short window of time to do it when recurrent cervical cancer can be so aggressive and spreads quickly so I didn’t even consider palliative chemo which I know would have been my only other option.
I find it very straightforward to deal with stomas because I can see them and deal with everything myself, but I know a number of people with nephrostomies and they all seem to find them tough to deal with, and often get infections. I can tell you though that there was very little information given to me about my stomas and I have learned everything as I’ve gone along, initially with help from an excellent stoma nurse who visited me at home when I left hospital. It’s just assumed that you can manage this massive life change...and I have been lucky too in that I’ve never had any type of infection or required to be re admitted. How hard it must be for you not being at home and dealing with this at a different hospital, and such a long hospital stay too. Have you joined the cervical cancer group on the forum? I haven’t been a member there long, so I’m not sure if there any ladies who have nephrostomies, but it’s worth joining and asking the question there too.
Hope we can keep in touch in any case-it’s so good to be able to talk with people who have the same type of cancer to share experiences. xx
