Hi everyone
I’ve recently been diagnosed with stage 4 cervical cancer and had my first chemo session yesterday. Finally after three months of tests and scans I’m feeling good about finally getting to the point where I can kick this thing in the butt.
However, I’m facing the nephrostomy procedure next week. The whole this is just terrifying to me, from the procedure, managing the bags and lines, sleeping with night bags,(sleeping is not something I’m not good at), what do I wear and stupid things like that, I just feel like I don’t have a decision in this, wasn’t given enough information, which has left me googling…not the best thing to do. It just feels rushed. I feel like huge part of my life are being taken away. I’m sorry, I don’t mean to whine…but my head is all over the place.
any advise? Has anyone living with this, especially long term nephrostmy users.
Hi Rosie S26 and welcome to the stoma group.
I’m sorry to read you’ve been diagnosed with cervical cancer-you may want also to join our specific support group where we have other ladies going through stage 4 cervical cancer treatment and the link is here-
You would be able to connect with others there who have had to have nephrostomies. I know at least one of our group members is having this procedure soon.
I have been through cervical cancer twice, and had chemoradiation and also total pelvic exenteration surgery when my cancer recurred. This left me with 2 stomas as I lost my bladder and rectum. Although I’ve not had nephrostomies, I have been living with 2 permanent bags for almost 7 years now, so I can understand how scary this all is for you.
It’s sad that you feel you haven’t been given enough information, so you may want to give our support line a call-the number is in my signature- where you would be able to speak to one of our nurses who could tell you more about this. This procedure will be done because it’s important for you, and as the patient you always have the right to decide on what happens with your body.
In my case, my bags are attached to my abdomen, so this is different to having nephrostomies, but at night my urostomy bag connects by a long tube to a night bag where the urine collects while I sleep, so this is similar. To be fair I don’t notice my bags at night, but I do appreciate that nephrostomies can be more difficult to manage, especially in terms of being able to sleep well. You need to take care not to lie on the tubing or pull on the tubes.
This will be a huge change to your life, but it is possible to live with any type of bag and still cope. It becomes easier with practice, but initially you should have support from nurses to help you manage and get used to things. Because my bags are on my abdomen, the issue of what clothes to wear is different to your situation-I wear the same clothes as I’ve always done, but I don’t know what the impact on what you wear will be when the bags are connected through your body by tubes.
No questions are stupid-please don’t think that. You need to know as much as possible before your surgery. Have you got a CNS (cancer nurse specialist) you can contact to talk you through things? I assume the reason for your surgery is that your tumour is affecting your kidneys and not allowing urine to drain freely at the moment? If so, the nephrostomies should improve this and help your body.
Sometimes the medical staff are so focused on getting things done, they forget to tell us the information we need to know about why something is being done, and how it will benefit us. Please try to contact your nurse as soon as you can to have things better explained-fear of the unknown is very difficult for us to handle, and getting more info can help to calm us.
I can truly understand how scary this is for you-it would be for anyone. Please think about joining the cervical cancer support group in the link I’ve given-it can help to talk to others who understand.
Sarah xx
