Hello Rebecca, 

I am so sorry to hear about your mum. I hope you will hear from some of our members' experiences and that they will be along shortly to share their individual stories with you. 

How did the hospital appointment go? Did you learn anything new from the results of her CT scan? Have they discussed what options are now available to her? 

As you say, the best thing for you to do is to just be there for her I know it is really hard at the moment but your mum will very much appreciate your support during this tough time. 

We're all here for you anytime you feel you need to chat to someone who understands what you are going through. Our nurses are also available on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm if you wanted to talk to them about what they have said to her during the hospital appointment. 

Very best wishes to you and your mum 

Lucie, Cancer Chat Moderator

thanks for your reply Riversidedawn, and so sorry to hear of your experiences, it must be very difficult having to keep fighting this awful disease over so many years.

My mum’s scan didn’t seem that clear - they said that the bowel looked dilated (have taken this to mean bigger than previous) and that due to her recurrent regular symptoms of blockages they believe the primary tumour is growing or changing although there is no new spread. They recommended starting chemo again, oxaliplatin and capicetabine (which she had 6 cycles of before). They said they will look at a stent if needed but they want to avoid surgery, as I don’t think they really know what they will find if they have to go down that route.

Sub acute, I think it’s a potentially temporary blockage which will sometimes resolve itself however this only happens in my mums case after hours of what she describes as like contraction pain (severe), vomiting and then diarrhoea.  

Can I ask, did the surgeons discover the spread to your peritoneum when they were operating due to the obstruction or did they know previously to the surgery? I read so many different approaches for different people. 

I do hope that you are recovering from your surgery and that chemo is going as well as it can for you and mostly that you get some positive results at your next scan, good luck  

Rebecca x

Hi, scans often seem to be a bit inconclusive. I spent 4 weeks vomiting and having labour type pains, saw 6 or 7 doctors including a night in A&E and oncologist but they all said I wasn't obstructed - even though I was vomiting poo (sorry!). I had a quarterly MRI scan booked and I think they were all saving NHS funds by waiting for that instead of scanning me. The MRI confirmed the obstruction and I was immediately admitted, had further scans then surgery 2 days later.

They said they weren't sure what they'd find when they open me up, it may be operable or not, I may or may not survive surgery (I know there's risk with all surgery but I've never been told so bluntly before!). They weren't exactly reassuring but I had a matter of weeks to live without surgery due to malnutrition. 

As it was the surgeon was a miracle worker, he removed 40cm of intestine and the tumours attached to it, but had to leave other inoperable tumours. When I saw him for review 8 weeks later I think he was genuinely stunned that I survived, and have regained 1 stone of the 2.5 that I lost. 

Surgery is risky, but sometimes it's the only way they can confirm what's going on. Where does your mum live? Have you heard about HIPEC? I'm going to ask onc when I see him after my scan.

Xx

Hi, thanks so much for sharing that. It must have bewn terrifying being told that but equally you unfortunately won’t have had much choice with the pain you were in. I am glad that the surgeon was excellent and managed to help you! There’s a part of me that would like them to remove the tumour/s in my mums bowel but I don’t know enough to be able to fully say that, and either way, it’s not my decision to make! 

The HIPEC I have asked about previously, I was told it had only been performed on around 2 occasions at the cancer care hospital in Edinburgh where we live. I don’t know all of the requirements people need to meet to be ‘eligible’ in an area where it is offered but it feels a bit of a post code lottery that it is possible to be offered in some specialist hospitals and not all. 

It sounds like you are recovering well from your op and hopefully you get positive scan results soon! 

I am hoping to get my mum to try cannabis oil in an alternative treatment route seeing as the options I feel she’s being given are so very limited and always have been since the outset. I just feel that surely something more can be done. 

Rebecca x