I’m writing this post in case others may find my experience useful in the future.
I was diagnosed 3C HGSOC in Nov 2021,(fit aged 57) followed with Carbo/paclitaxol and debulking surgery for 6 months until NED summer 2022. Had good summer then back at work teaching on Niraparib but cancer recurrence in Nov 2022. Watch and wait caused me to plummet quickly so missed opportunity to get on trial as was too sick. From Jan 2023 to May I was on weekly chemo paclitaxol but it didn’t help much, it just kept me going for a bit. Since June I have battled with partial and full bowel blockages. This can be caused by the cancer and adhesions caused by the surgery.
I have been in Addenbrookes for 6 weeks out of the last 9 (home briefly when it seemed to clear). I am on TPN parental nutrition for 12 hours a day. I couldn’t eat or drink anything otherwise my tummy would hurt a lot. Every day I would be vomiting brown fluid from around 2pm until 11pm. The doctors said the fluid builds up in the bowel and it’s the only way out.
Eventually after 3 attempts I went for a NG nose tube. This is a tube that goes up into your nose and into your stomach. It continues to empty the contents of your stomach into a bag taking pressure off.
This has made a massive difference as I don’t get horrible stomach ache nor vomiting. I can have a few sips of tea and this will just come back up the tube. Still nice though.
The doctors have talked about getting a venting peg put in my stomach which involves making a hole in my stomach and then it drain into a bag, no nose tube. I’m waiting to have this done if I decide it’s worth it.
I may be able to leave the hospital as I have arranged for my TPN (nutrition bags) to be delivered to me at home.
There’s no more treatment for the cancer. Doctors don’t want to treat me with a blocked bowel. I’m on steroids.
I’m on the slow (?) decline, managing symptoms every day. When I think it’s not going to get worse it does but sometimes things get better (ref. NG tube).
My family are great and I’m so glad to have time with them now. I’ll keep going as long as I can. Every day is precious.
“Try not to get a bowel blockage” was what my oncologist told me. No one explained how not to. Eat low fibre diet. Do research. Keep that bowel moving.
Good luck
Allison
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Narna1
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Allison, thank you for your post. I am awed by your attitude! However I can’t believe they’re not going to try anything to reduce the cancer. Is surgery a possibility? I hope you are able to enjoy time with your family. Hugs!
The surgeons have said due to multiple blockages it would be too difficult to undergo surgery. Might set me back. Stoma bag. Still needing TPN etc. I’ve decided to go for making the most of what I’ve got left. X
Thank you so much for your post. I am also in awe of your inspirational attitude, bravery and continuing to think of others by putting information out there. I hope that the interventions help you to feel comfortable and that you get home to your wonderful family Thinking of you xx
Allison, you’ve been through so much and yet you’ve so generously given your time and valuable energy to help others. Thank you so much. I hope that you get home soon with all that you need to keep going. I feel so sad for you 💔 If you think you might be strong enough and you want to share your story and message further, you’d be so welcome to talk to me on my podcast. Just let me know and we can do it if you would like. Much much love to you xxx
Hello lovely. I’d be so happy to have you share your experiences as I know your story will help many. Could you send me a private message please with an email address so I can contact you to organise? We can sort a date first of all to chat for half an hour so I can tell you how we record etc.
Dear Allison, thankyou so much, especially for helping others with advice at a difficult time for yourself. I love your attitude. You are so right. No one does explain the whys and what to do. Time with your family is so important and I hope that you can soon be home. I hope that the lovely Ovacome people read your post as your advice is so important. Bless you and thankyou for caring. You are a wonderful teacher. ❤️❤️❤️
Hi Allison. Thank you very much for your share. I can relate to your story a lot. So pleased to hear you have wonderful support network.
I was in Addenbrooke's till a few weeks ago for bowel obstruction. I went home briefly after my liver resection ( OC recurrence in liver). Got bowel blocked so back in. I had the same treatment, picc line with TPN, NG tube and NBM.
I did research on low fiber diet whilst I was there too. Because stories like yours help me and understand what I am going through. Realised how important to get my bowel moving, and it is started working again. Thank you again for your share, I am so grateful for people like yourself who are brave to share your experience with us on here.
God bless you Allison lm sure your very wise words will help our fellow teal sister's . I have to have 6 laxatives a day to keep mine clear and l absolutely hate it but unfortunately its the only way l can ever go so l feel your frustration. Ive waited over 12 months to get a hernia in my stomach which is causing my small bowel to stick through not a great look. But after 6 disappointments l have a date to sort it out on the 17th Aug please god it happens this time lm lucky l managed to get a surgeon who lm really confident in. You sound a real fighter think we have to be and stay in the positive zone always although l know its not easy in our situation. Love & hugs l keep lighting a candle at mass for us all every week. Please take care and hope you get more comfortable ❤ love & hugs SheilaFxxx
Hello Alison - I just wanted to say thank you so much for your post. As others have said - your words are very inspirational. You are inspirational. I had not thought about a blocked bowel and a low fibre diet - it never occurred to me until I read your post. I really do hope you get back home to be with your family. Warm wishes and hugs are sent your way, ❤️
Dear Woman of Strength, All love and admiration to you. Would a second opinion be appropriate? Nima Abassi, gastro surgeon, removed the ovarian cancer from my stomach by keyhole. On the NHS at Royal Surrey Hospital, Guildford. I don't know if bowel blockage is his area, but might be worth investigating. Emma xx
Hi Allison, I am sorry you have gone through so much & have now decided not to put yourself through any more torture than is necessary. I hope you get home to be in your own surroundings & back with your family. I hope you will be as comfortable as possible & get to spend quality time with them. Please let us all know how you are keeping & thanks for your post. Hugs X
Dear Allison first off I am so very sorry to hear what you have been through. I am surprised they do not have another chemo regime for you. As I hear you did first line carbo taxol then niaparib the taxol again. They didn’t try doxil and carbo? Or cisplatin and gemzar? Or Abraxane? Or avastin?
Have you had genetic testing and did they send your tumor out for testing and your blood? The only reason I ask I have been on 5 lines of treatment since 2020 and 2 months ago I couldn’t hardly walk needed a wheelchair. The cancer was all in my liver and lower abdomen and in the hospital for a week with bowel blockage cleared it but draining abdomen every 1 1/2 weeks of ascites from the liver 4 .6 liters last time I have started Abraxane very tolerable and numbers are dropping. It’s a form of taxol but different. Just hoping something will work for you! Keep up the fight and your wonderful positive attitude.
thank you Bobby it has been difficult to respond since Sashay passed. I have been asked to tell if my journey and how hard I have fought and the trials and tribulations. I’m going to be posting and hopefully it will give strength hope and the ability to fight and not give up to keep looking for what will work as we are all different.
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