Hi [@Snippy]‍ 

please do let me know if you received my private message I sent to you with a few questions I hope you dont mind, still working out how to use this site. And very best of luck with your Chemo you are smashing it xx 

Hi SK20, 

I am so sorry you are going though this. I can really relate to the questions you are asking and will try to answer them with my own experience with mum. Although, as you acknowledge, cancer is such a personal journey and my experience could be far off the mark with your mum's future journey. 
 

Like your mum, they sruggled to locate the primary cancer. They could see cancer was in the peritoneum and omentum, but primary peritoneal cancer is rare so I think they wanted to confirm this was indeed the primary source. They initially suspected it was her dudoneum, but this turned out to be scarring from the excess vomiting she did. This delayed her diagnosis while she had biopsies, and stents fitted etc and it was determined it wasn't cancer. She had a stent fitted to help her to eat as she was struggling to keep food down. We now know this was due to the burns from the stomach acid. 
 

They then thought the primary could be breast or ovarian cancer, which was another set of tests/mammogram etc but this was all clear. Finally, they confirmed it was in fact primary peritoneal cancer, with thickening to the omentum (omental caking they called it'). There was such a delay in getting the correct diagnosis so treatment could begin, but once they were sure treatment started within a couple of weeks. However, it was March by the time she started and coronavirus was at its peak, which I am certain didn't help with the speed of the diagnosis. There seemed to be so much waiting and unanswered questions it was hard to know how to support mum or get any reassurance from anyone. This part of your post resonated with me so much. 
 

mum had 6 months of chemotherapy, at monthly intervals, and seemed to tolerate it reasonably well. She didn't lose her hair and she was grateful of that. She lost a vast amount of weight though, and was struggling to eat much at all, but I think that was due to the scarring snd stent rather than the peritoneal cancer, as such. the bloods for tumour markers had dropped a lot and all was looking as well as it could. 
 

she finished her chemo in September, and actually felt worse off the chemo than on it. We tried to reassure her this was the cumulative effect of the chemo and it would take time for her to feel better.   The next bit is hazy, because mum tried to protect us and she was having consultations alone due to covid, so she was able to be selective which what she told us. However, It transpires that although she told us it hadn't grown snd had remained the same, it had in fact grown and she was too weak for further chemo. The tumours were dotted all over her peritoneum and were pressing on her intestines causing blockages and she had also developed shadows on her liver. She passed on November 9th. 
 

The waiting is so cruel and nothing seems to happen fast. I can't complain about mum's treatment, but I wish things had moved quicker at the beginning. We were reassured there was lots going on behind the scenes and she hadn't been forgotten. You have to take that at face value. I know it's frustrating. I totally get it. 

It's important they are sure they locate the primary though, for any chemotherapy to be effective. It has to target the cells from the primary origin, so the delays are to ensure she gets the right type of chemo for the cells she has. I was guilty of thinking 'who cares where the primary is, just get her on chemo' but this was out of sheer frustration at the waiting. 
 

I'm not sure if this helps you or not. I just wish I had been able to talk to someone with experience of this cancer as it's such a lonely journey anyway, but expecially when you find yourself a member of group for a rare cancer. There's no one to talk to, but we are here for you. 
 

if you can, please keep us updated. I really do care as do others in a similar situation. 
 

best wishes to you snd your mum xx

How are you snippy? 
 

always here to listen xx

Snippy, you are doing so well! Honestly, you really are. It's not an easy road, but you are reaching each milestone and each one you pass leads you to the light at the end of the tunnel. It sounds like your team are happy with your progress. I have everything crossed this will continue. 
 

Good luck with the chemo and the post op consultation. I am sure come the 7th you will feel fewer pains from the surgery. It's so positive you could have the surgery, an option that my mum was never given. 
 

please let us know how you get on, when you feel able. I send you a million positive thoughts, you can do this! Stay strong xx
 

Thank you Johol

I is so kind of you to give me such encouragement when you've been through the loss of your mum, that must have been the hardest thing ever! 
 

I will keep in touch and remember if you ever want to chat I'm happy to let you have my number xx

Hello Snippy, 

Just thinking of you and wondering how you are post surgery and how your check up with the hospital went  earlier this month? I have everything crossed you are making good progress Xx

Hi johol,

My mum was 72 also, non smoker and fit too, it does seem unfair, I hope your doing ok xxx

April x