Hello ladies,
I am 2 years post treatment for stage 3 cervical cancer (radiotherapy chemotherapy and brachytherapy.) I am really struggling as a 39 year old plunged into menopause, people around me just think I'm cured now and thats it but mentally i am struggling a lot, i don't recognise myself anymore & i feel like I'm grieving my old-self. I can’t be the only one to feel like this? At least during treatment i was told what I needed to do where I needed to be but now i just feel completely lost, anxious & sad not to mention completely traumatised.
Im looking for support groups to speak to people who have been through the same, there are none so I have joined this forum x
Hi Mimmi and welcome to our group.
I’m so glad to have you post and be here with us.
I just typed a long reply to you and lost it all! As it’s really late, I will re do my post tomorrow and remember to save it this time! I didn’t want you to think your post hadn’t been heard-it has- and I can completely understand your feelings,
Let me reply tomorrow morning and I will share some of my own experiences and feelings, and hopefully you will see you are not alone with this.
Sarah xx
Hi Mimmi
The standard treatment for our cancer is tough, and is over a relatively short period of time so it’s very intense. I found it hard when it was over-especially having 32 radiotherapy sessions-and felt very vulnerable and almost cast adrift when it finished. Suddenly after so many daily appointments, reviews, being positioned for radiotherapy there was nothing except the wait for the post treatment scan. That was difficult for me.
Once I got past the scan and a NED result, things did feel a little better, and I got on with life, but there was always the fear of recurrence at the back of my mind though everyone assumed I was cured and should be fine now. When my cancer recurred only 9 months after treatment ended, it was like a body blow, and the fear was worse than when I was first diagnosed. It was difficult to feel positive this time.
I underwent a very scary few months, eventually ending up with a total pelvic exenteration which saved my life but changed me forever, physically and mentally. There was no psychological help at all offered to me, and by the time I was about a year out from surgery, I was in a very bad place mentally so I asked for help.
My lead surgeon, who was my consultant, seemed astonished that I should need this and that actually shocked me, but I did get some counselling which helped somewhat at the time.
My life has been very difficult over the past few years, with other health issues, and eventually this year I broke down in hospital after having a stroke. Finally I was listened to and I have had weekly counselling ever since, but it took this major event for me to get the help I needed.
I had never discussed my surgery with other people in my life-how do you even start a conversation with people about having 2 stomas and having your vagina removed? I found it impossible, and so people assumed I had been in hospital for a hysterectomy ( I think-although my next door neighbour asked me when I was having my mastectomy!). I found myself unable to tell anyone, so I just had my partner and closest friend to talk with.
My therapist now has been hugely important-I have a non judgemental person to listen, and allow me to cry and express what I’m feeling. She acknowledges what I’ve been through and the fact that I have ptsd caused by the trauma I’ve been through. If I had been able to have consistent counselling after my surgery, or even before in preparation, I might have coped better but I was left alone to deal with everything in the first covid lockdown.
My ptsd centres around scans, in particular the mri machine. I refused an mri scan last year for an unrelated issue because of my fear but was able to have a CT scan eventually, shaking and crying and refusing to go into the scanning room at first. This is how bad I have been. This year I again needed scans of my brain and neck, but with the help of very understanding staff I was able to go through with them.
So, I completely get where you’re coming from about the feelings of trauma and sadness. Have you ever had counselling, or would you consider it? I think it has really saved me this year and has hugely improved how I am feeling.
In terms of other things, there was limited support for my situation online so I set up my own support group which is flourishing now and I have made many new friends who are very important to me and completely understand because they have been through the same. I did this almost 4 years ago now, and it’s been one of the best things I’ve ever started. If you haven’t been able to find anything, you could start something yourself? Speaking to others who “get it” is very different to speaking to family and friends who cannot.
We’ve had a number of members in the group here who have successfully come through treatment for stage 3 and I’ll tag a couple of ladies I hope will see this post and also respond to you. Snobird Lulabell
I will look for others I can tag in a subsequent post, and also give you a link to a paper I and many others have found really helpful which goes through the cancer post treatment experience. I still now go back and re read this. We also have a “life after cancer” forum where you can find people who are feeling the same wat as you are which might be helpful, and I’ll give you the link to that too.
You are very much not alone, though it might feel like that, but you’ve made the leap to make your post, and I hope you will find the group and community in general will be helpful for you.
Take care, and I hope we’ll chat again.
Sarah xx
You can ramble as much as you’d like to Mimmi -the group is a safe place to share your feelings. I found I just gave the automatic response ‘“I’m fine” when I definitely wasn’t, but people accepted it and no-one really asks me how I am nowadays. People in general can be uncomfortable about talking to those of us who have been through cancer-there is still fear about it.
I think we go through quite a range of emotions at different times depending on our own personal situations like you being sad for your son not having a sibling. It might be time to explore getting some more counselling to work through things. It doesn’t change overnight-I am no positive Pollyanna! But I have tried to change some of the ways I was feeling and I can see that’s helping me. I didn’t want to be bitter about what’s happened to me, but inevitably those feelings creep in from time to time and I have to work hard at seeing the silver linings and appreciating my life instead of mourning the one I’ve lost. It’s a work in progress for me and I want to feel I’m winning at it.
Keep chatting with us here, and I hope it makes you feel more connected with those of us who understand.
Sarah xx
