Scared and frightened

Hi Karen

This waiting stage is the hardest and I understand your fear. I also struggled with a build up of fluid which was very uncomfortable and made it hard for me to eat because I always felt full.  You can ask them to drain it again. 

I had stage 3 cancer which had spread throughout my omentum. I had 3 cycles of chemo followed by radical surgery in which my womb, ovaries and fallopian tubes along with most of my intestines were removed. I now have a stoma and colostomy bag. Following the surgery I had 3 more cycles of chemo. That all finished in December 24 and since I have been receiving immunotherapy treatment. At this point there is sign of cancer returning. Phew! 

I am 68 and am living a normal life. I exercise regularly (I’m even more aware now of the need to stay healthy), we travel extensively and I recently went skiing. I’m doing everything that I did before cancer. The main difference pre and post cancer is that I am even more aware of how precious life and health is and I am living life to the full. 

I encourage you to stay hopeful and focus on what you can control at this time which is to eat healthily and exercise regularly (just walking is enough) as this will help you be fit to cope with the chemo and any surgery. 

I wish you the best. 

I hope you don’t mind me joining the conversation, my mum had the Debulking surgery after Christmas and has struggled mentally so they have put off the chemo and now the CA125 has raised to 400.

My mum has had a stoma, I noticed you said you had one, is it permanent? I think this is why she is struggling so much to cope.

Xx

Hi Rachini,

No problem with your question and joining the conversation. 

my stoma is permanent, the cancer had spread to much of my intestines so it needed to be removed. I’m sorry that your mum is struggling mentally and it is worth asking for a referral to talking therapies (or even paying privately to fast track if that’s an option). In the initial couple of weeks after the surgery I did struggle with the knowledge of this “thing” being permanently part of my body and there were a few times of being very upset over the bag leaking (chemo can play havoc with output) but I now recognise the signs of a potential leak (you can smell it!) so I change the bag.

If your mum is struggling with the daily routine of the bag, I recommend contacting the stoma nurse team, it is what they are there for and are very kind and helpful. 

There are also a few useful videos in YouTube by people with stomas with hints and tips for dealing with issues  and finally there is a colostomy charity (Colostomy U.K.?) with volunteers that she could chat to. 

For me the biggest incentive to learn to live with it was that the removal of this cancer meant that I lived. Without the surgery, chemo and bag I didn’t. It was as simple as that. I would embrace everything that lengthened my life. 

I would encourage your mum to seek help from charities and health professionals in order to be ready for chemo as this bag and chemo are the key to longer life. I wish you all well.