Pseudomyxoma peritonei

Pseudomyxoma Peritonei is a rare cancer of the appendix. If you're suffering from PMP, or know someone who is, join this support group.

MOAS + 5

Kylo
Posted by

My op on Wed went for 13.5 hrs and had several complications. My diaphragm and bladder were nicked resulting in a chest drain and lots of urinary/catheter pain and problems. I also had a terrible reaction to ketamine and had hallucinations which led to me laying there on Thu night thinking I was about to die.

I lost my spleen, entire right bowel and parts of my gall bladder and pancreas. My pathology has come back at about 79% high grade with the rest low grade. My PCI score is high at 24 out of a possible 39. So I'll be on 6 monthly scans and blood tests for a while to keep a close eye on recurrence. And I'll have an oncology appt once I'm out of hospital to discuss traditional chemo to try to hold it off.

But having said all that, the surgeons are confident they've removed all the cancer and I'm off ventilation and out of ICU now. I can speak as much as I want and can move around a little bit. I've had 3 different beds (because of being moved and one not working) and have managed to move myself between beds each time. I sat out of bed for 2 hours today and had a (seated and fully assisted) shower so I feel more human!

My main problems at moment are: pressure/pain every time I do some wee .. there's about a minute and a half of extreme pushing pressure in my entire stomach/bowel and I'm fairly sure this will result in some wind very soon from pushing so hard it hurts!

And second problem is trying to get the balance right in terms of dosage and timing of pain tablets. I've been taken off the patient controlled analgesia and switched to tablets .. a low dose isn't enough, a high dose makes me nauseous and so we're trying an in-between dose now.

Am only on fluids till bowel starts up again but feeling ok and no stoma/bag so that's great.   

Am sharing a room with a lovely lady about 10 yrs older than I am.. she and her visitors are very encouraging and helpful to me. We have the same surgeon and she's been with him for about 15 years on a bowel cancer journey.

 Boys and hubby seem to be doing ok .. it's been hard for hubby to fit in visits to me as well as other stuff but he's mostly managing. With me in ICU he hadn't brought the boys in before yesterday so he's been leaving them with various friends/family and they've been all over the place but been very good about it. Was so awesome though to see their excited faces yesterday and give their hands a big squeeze! And they took home a jelly each so that was exciting for them  


Adelaide, South Australia

Flowery
Posted by

Well apart from all the drama it sounds like you are doing really well! Well done you! The wee thing will hurt for a good few weeks but it should eventually ease up. Keep moving about and get up walking ASAP you will recover much faster , keep us posted! I’m so glad that you are out the other side of it now . Great news! X

pmpsurvivor
Posted by

Sounds like everything is going as it should be - I think my messages have crossed, I need to read all of the posts before I start commenting!!!


Angela
Trustee, Pseudomyxoma Survivor
pmpsurvivor 
Kylo
Posted by

Thanks so much


Adelaide, South Australia