Hi. I was at the hospital on Friday to discuss treatment. To be told that the cancer has spread. Its at stage 3 now. So they are thinking an operation to remove everything. And possibly part of the bowel and if they cant attach it back they are going to have to remove the whole bowel. In which I will have to have a stoma fitted. They also said that 1 in 100 dont make it through the op. To say Im terrified would be an understatement. Has anyone else been through this? Or offer any advice. Please. Im so scared.
Hi Mystena
I hope you don’t mind me replying, as I didn’t have the same cancer, but I have had a major surgery which might sound similar to what you’re facing and I didn’t want to read your post and not reply.
I can feel through your post how scared you are, and I do understand how that feels. I had cervical cancer which recurred so I had an operation called a total pelvic exenteration. This involved removing my womb, ovaries, fallopian tubes, cervix, my bowel, bladder and vagina, along with lymphnodes and other tissues. I had 2 stomas formed for the loss of my bowel and bladder. So, pretty major!
As always in the potential consequences of the surgery there is, in the consent form you sign, the possible mortality rate. I’ve had that with all my surgeries and indeed treatments. I had a 30% chance of surviving my surgery, so the odds were stacked against me but I chose to go ahead, as it was the only real option to get rid of my cancer.
What I can tell you is that I’m still here-3 years and 10 months after surgery and doing fine! It was a long recovery, but I have never needed further treatment, or been readmitted to hospital for any complications since surgery. I had very good margins, and all of my cancer was successfully removed.
I just wanted to say that while it’s incredibly scary to go through such a major surgery, it’s possible to have a very good outcome. I got used to my stomas very quickly and it’s second nature now to deal with them. You may not need to have one if they can successfully rejoin your bowel. I didn’t have cancer in my bowel, but it had been damaged by radiotherapy, and I asked for it to be removed to try and give myself the best possible chance of success in the op. Cancer had spread over my bladder so it had to go anyway.
I hope that I can give you some hope here, and am happy for you to ask any questions if you feel it might be helpful for you. I can say that in all the time since my surgery, I have never once regretted it.
Sarah xx
Hi Mystena
I coped after the operation by having a lot of help at home. My partner was working from home- I was discharged from hospital on the day the first lockdown was announced. I was very tired, and extremely weak so needed help with just about everything.
For me, the thought of the operation was the most difficult thing so I didn’t dwell on it. I focused on the fact that it could potentially get rid of my cancer so I didn’t think about the process to get there as it was too much to think about.
I’d suggest taking things a day at a time and focusing on the actual facts you know for sure right now. A stoma is a possibility, not a certainty for you, and the same with potential chemo. Try not to think too far ahead or you’ll drive yourself crazy with fear and worry.
I was perhaps in a different headspace from you as I actively wanted this operation, so I did have a few tears when I was finally told it would be possible. I was in a situation where it was my only chance and I was in a tremendous amount of pain. I didn’t cry apart from that, but that’s because I saw it as my only chance so I just got on with it-no sleepless nights in advance of it and just trying to keep in a positive mindset.
You’ve only just been told you may need major surgery-I had longer to get used to the fact it was a possibility for me. You talked about an operation to “remove everything” which is one of the reasons I replied, but I can’t be sure what you mean by that so it may be that your operation is nothing like as extensive as mine was. And if they are “thinking” about it, does that mean that there may be an alternative for you?
Sarah xx
Hi Mystena
I was in hospital for 13 days. Will someone be caring for your son while you are in? I had no nurses come to the house with the exception of the stoma nurse (who worked in the community) on a weekly basis for about 6 weeks. Very occasionally I had a district nurse come as I had a small wound infection but it was very hit and miss and often no-one turned up when they said they would.
It will be really important for you to have care when you come home, so you’ll need to make your gp/consultant aware of your living situation so that something can be put in place as a matter of urgency. You are having major surgery and will not be able to do much when you come home. Plus you will need a lot of rest. You should have an assessment of your needs carried out so that the help/care package is in place in time for your discharge. I can’t stress that enough, and there’s not going to be much time to get this sorted out if surgery is in the next month or so.
I absolutely could not have managed without a lot of help, so I’m just speaking from my experience. I didn’t realise in advance just how much help I needed, so it’s important to make it clear you will need this. For example, I couldn’t take a shower by myself, couldn’t change my bed or do anything in the house, couldn’t even lift a kettle.
There will be a lot of healing inside to be done, and if you have a stoma, that will have its own challenges. You will need to take things very easy and not push yourself, so speak up and say you will need care, so that you are “on the radar” with the necessary agencies through your gp/social services.
Sarah xx
