Mum has stage 4 peritoneal cancer

Hi  and a very warm welcome to the online community.

I'm sorry to read that your Mum's been diagnosed with peritoneal cancer. I had a different type of cancer but I know what a worrying time this will be for you and how hard it must be for you ,as a nurse, now seeing things from this perspective. No, you're not having a "pity party" so I'll send you a hug for that.

It might be useful to also join another forum Family and friends, (just click on the link I've created) where you'll be able to to connect with others supporting a family member on this journey.

It would be great if you could pop something about your Mum's journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time.

Sending you huhs, B xx 

So sorry to hear about your mum's diagnosis. I was diagnosed with PPC at the end of July last year. Grade 3, stage 4, with Mets to ovaries, lung, liver and bowels.

Life has certainly changed since then, it's been a reinvention of myself, which isn't a bad thing.

My partner and I split up recently, because he couldn't cope. It's not always easy, but you have to try and stay positive, and reach out to people. 

Thank goodness for communities like this. You certainly aren't being a burden, you need to keep talking, even if it's to a virtual person.

I hope your mum can go through with the chemo. 

Big love and hugs

J xx

I don’t know if this is helpful or not. I had stage 2 bowel cancer and got over that easily. 3 months later my CT scan was clear. 3 months later a CTscan followed rapidly by a PETscan showed that I had devolved 5 cancerous stage 4 tumours in my abdominal wall and was told it was incurable and inoperable. That was on 21 December 2018. I’m still here 26 months later, 38 rounds of chemo under my belt and no evidence of any disease in my body. As I am a man peritoneal cancer is even rarer than in a women. So rare, in fact, that I started a Facebook group for men but this has now become mainly women. I am now trying to start a charity to help sufferers. My history hasn’t been any way as bad as your mum’s. Even though I’m in remission I’ll never stop the 4 weekly 7 hour chemo day and the 48 hours carrying a chemo pump.

it’s easy for me to fish out platitudes etc by saying, which is true, that I maintained a very positive attitude. But I believe it did help me. Especially as a ukulele player - surely no-one wants to give up while they’ve got a chance to ruin everybody’s life plonking and warbling away.

I can only hope your mum keeps going and I can only wish you both the best.

\Just read your post Barryplaystheukulele.. My husband had stage 3 bowel cancer which unfortunately had spread to this lymph nodes.  Had successful surgery and chemo and given the all clear after 5 months.  Started getting stomach pains 3 months later which the GP should have flagged up to the hospital.  He did not not and eventually we went to A and E and told had blockage in bowel again had another scan and again said in the clear re cancer.  If only. After more pain and key hole cameras   he was diagnosed with secondary peritoneal cancer.  Which had attached itself to the small intestine and other areas of the abdomen.   He had a 14 hour operation and told all visible cancer removed but sadly also most of his bowel. The cancer had attached to the outside of the bowel and tied it in knots, hence the blockage. 

There are massive problems controlling the output to through the stoma, so 6 weeks later still in hospital.   

He will live the rest of his life being on a food bag at night.

He is also a beginner Ukele player, but also guitar player.

you story has given me hope.  and I am going to show it to him when I next visit in hospital.

Y

Hi Barryplaystheukulrlr, you sound amazing snd your story has given me renewed hope in my fight against cancer. I’m a true believer if positivity and surround myself with positive zen vibes all day! Going through my second round of paclitaxel chemotherapy after Folfox nearly destroyed me (I had a bowel ischemia after dose 3).

arevyoubstill on folfox now? Could you tell me which treatments you have tried please? 

Tofster

Sorry to hear that your mum.isn't coping. I am waiting for my diagnosis but trying to stay positive as I had ovarian cancer 2 years ago and managed to get through that. 

I wanted to say that I too have been struggling with pain and constipation. My husband phoned 111 and I am now using a laxative and pain patch along with occasional paracetamol. Being able to cope with the pain enables me to stay positive and eat.

Hope it helps.

I remember that time before treatment started so so clearly   Like your mum I was in a great deal of pain, constipated and with acid reflux   I took Oromorph to help me sleep but I was so poorly, I also got in contact with the local hospice.  A fab nurse came to see me (even in lockdown) and sat to chat with me to reassure me that they would be there, at the end of a phone line or in person, even in the middle of the night (when it aways seems most grim).  I got myself that "just in case" pack of meds too  

Well here we are several months later and I'm no longer in pain and although I can never be cured, I am delighted that I've been given some extra time to be well enough to enjoy being here.  I'm even planning trips away  

So my message to your mum is to hang on, to reach out to each and every source of medical support that she needs just to get her through this patch  Chemo worked well for me (read my profile for the detail), almost straight away  So I see you posted 2 months ago....how is she now?

Have hope  

Thank you for a huge laugh   Loved your cartoons on your profile too   The FarSide and Charlie Brown: fab choices  

Good luck with your charity and FB page, spreading the word.   And even with that uke (I adore UOGB)