Cervical cancer and pelvic exenteration surgery

Oh Sara - I am greatful for this chance and I know I don’t have another one. Worries are normal part and we worry about everything - about anesthesia,painkillers,we worry what gonna happen after,how we recover and list goes on and on.And when you realise your main goal is to get rid of cancer -worries about morphine and constipation seems so stupid,but once we had so bad experience- we are afraid it gonna happen again and our mind constantly remind us what happened.

And how I said - I have no doubts in trusting my surgeon - she is professor in woman surgical oncology with a huge experience and I am so lucky to have her and thankful she is willing to help without promising anything or telling it’s gonna be fine- I just have to let her do a job and hope for a best and if it gonna end in disaster - at least I gonna know I tried everything . Xx

Recovery is very hard, no matter what. My surgeon tried an open abdominal salvage hysterectomy which didn’t work because of radiation damage so I was closed up again. I couldn’t exercise while I recovered because I was in a huge amount of pain as my cancer was spreading very quickly. I wish I had been given morphine then!

I waited 9 weeks after this failed op to get my TPE, but I wish I had not gone through the other failed surgery first. I wish she had gone straight to the TPE. I didn’t have issues with my colon, only radiotherapy damage but no cancer there but I asked my colorectal surgeon not to save it, even though he said it could be saved. He was surprised but agreed to do the colostomy. My thoughts were that it was better take as much as possible from my pelvis to reduce the chance of recurrence. Any type of surgery after a TPE is very difficult if they need to go back in.

Don’t try and plan to do too much after surgery-it’s too difficult, especially walking. Hopefully the op will resolve the issues with the fistula which will help you, but don’t underestimate the fatigue and utter exhaustion of going through all of this. Focus on coming through surgery first, not what comes afterwards. 

Sarah xx

Regarding bags -my urostomy bag was very hard to accept mentally,I started to avoid people and public transport,I always thought what I gonna do about leaks if they gonna happen in public ,I felt ashamed about my situation and slowly isolated myself even with a full understanding that it made my life much easier and when I refused the pelvic exenteration -it was partly because surgeon  told me that they gonna make me colostomy and just thought about one more bag made me freak out and I told I rather gonna die- and it was a big mistake

i have a history of mental health problems and that is another part of story - I have these bad thoughts that doctors want to harm me, trust issues, I didn’t believe that scan results are real and these things made me make wrong decisions and how often I feel like walking on eggshells ,because my brain reacts differently .

My cancer continued to grow and when pain started to take over I realised that I don’t want to die - now I can just hope it’s not too late and even if scan shows that there aren’t cancer in my bowels and I still hoping that I not gonna need another bag- thoughts about having another bag doesn’t seem so frightening anymore, but I know mentally I gonna struggle and in a same time -if one more bag can help rid of cancer - that is all what matters. 
Ladies I’m so thankful I found you and I can talk about it .Xx

Do you get any help with your mental health Elza? 

If not, then I would strongly suggest you seek some after surgery. I found myself in a very dark place mentally about a year after surgery and got some counselling through a partnership between BUPA/Macmillan which was free. Now the same arrangement gives you up to 4 free sessions. 

My thought processes were very different to yours because I was desperate to live, and desperate to be able to have surgery. I never even considered that having 2 stomas would be an issue, and to be honest, they aren’t. I would never have refused the surgery but I have seen others refuse it through fear. 

Bags leak-both colostomy and urostomy-it’s just something that can happen. I’ve had this at the hairdresser, in a cafe for coffee, in the car, in an airport, staying in a hotel. Lots of times! I just make sure that I always carry a bag of supplies and spare clothes with me but I refuse to let it stop me from living. 

I went abroad 4 times last year, going again in a few months and I’ve been as far as the Maldives on holiday. None of this is easy, but it’s worth it. I have the extra issue of being disabled so I need a wheelchair or scooter to go anywhere outside my home. 

I’m so glad I am still here and living! 

Sarah xx

Thank you - my thoughts been playing tricks for a long time and I can become suspicious just because somebody say some sentences which my brain connects in a weird way.And I don’t refuse surgery only because of bag.

I even was in a point that I didn’t believe that I had a cancer at all,I thought it all was fabricated ,scan results fake and when oncologist told me that they lost my biopsy sample - I was very sure they have something against me and to have a bag for nothing -I didn’t want it.

Regarding help- yes ,I know about these 4free counselling sessions and if I gonna need them ,I’ll take it. 
I even asked my surgeon if someone can stay with me in nights after surgery because I need someone for safety reasons- it’s against hospital policy so it was declined,but somewhere deep inside I know I have to go for a surgery and I’ll go.Xx

It would be usual to be placed in the high dependancy unit after surgery, where the ratio of nurses to patients is usually one nurse for every 2 patients. In intensive care it is one nurse to each patient.

I’m not sure what safety reasons made you think you wanted someone to stay with you at night? You would be very well monitored and looked after by the staff. I’m thinking maybe it’s because of your mental health and your lack of trust? 

I was able to have my partner visit in the high dependency unit but for those 2 days I was mainly asleep and not talking. I was in bed and had drains and was attached to oxygen, so I wasn’t moving about at all or getting up.

I’m very glad to read that, despite everything, you will go for the surgery-that takes a lot of courage. None of us here would ever want to put you off the surgery but we do want to make you aware of how hard it is, so sometimes it might feel like we are telling you too much. But I think it’s better to give you real experiences as I know that’s what you’re looking for.

Sarah xx

There are things I can learn from you,because I stopped living at some point- I put my head in a sand and refused to allow enjoy life as it is.

Now I praying to get through it and thank you for sharing your experiences from all the points -hard ones and happy ones and if I gonna survive -I will try to help other ladies like you doing here encouraging and showing that doesn’t matter how hard times can become -you still can have a life.

Thank you xx

Safety reasons is definitely my mental health -and thank you for reassurance that staff is caring and helpful and even if I know it - it would be easier to see with me somebody I know very well in such a hard time.

i read a lot about this surgery and I know -I don’t expect it to be easy and I hope I gonna receive all the available help to recover and possibly have more trust in a medical staff as I ever had .

And you don’t tell too much -the real experiences are the best and here  aren’t a lot of these types of surgeries and people who wants to share it. 

You have so much life ahead of you. Once you've regained some physical strength, you can work on gaining confidence in going out with your stomas. Baby steps. For now, the focus is surgery and recovery.  

But you can have it all in the end. 

Ladies - what the tests you had before surgery? Did you have extra scans and what types of scans ,extra check ups or you just went straight to surgery?