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.

Flowery?? Plus welcome new members & update from me

Kylo
Posted by

Flowery, I've been thinking of you this month and hope all has gone smoothly with your MOAS .. I hope you're doing well and I'd love to hear an update once you're up to it .. much love and gentle hugs coming your way!

While I'm posting I want to say hi to the 4 new members of this group (my phone doesn't let me go back and forth so I don't have the usernames but you know who you are!!) 

Please introduce yourselves, tell us your stories and share/ask questions as needed!  

As for me I'm now 10 wks post-op from the hysterectomy and appendectomy that turned into my PMP diagnosis in August.

And I've just this morning received a phone call to book me in for my MOAS on 14 Nov .. that's only 15 days away!!!

I've been coping ok till now as the PMP has truly been a vague kind of concept that (although Ive been googling and have met with my surgeon to go thru things and ask  questions) I haven't fully absorbed as actually applying to me

I'm struggling today now that it's about to become super real and I feel overwhelmed about what I need to organise and think about urgently .. I simultaneously want more time but also want to get it over and done with 

I'm going to write a list and just focus on crossing stuff off  to keep myself calm and organised .. hope that works


Adelaide, South Australia

Flowery
Posted by
Hi! Thank you for thinking of me it’s certainly cheered me up at a bit of a rubbish time x my surgery went well and I was feeling ok considering how full on it was. I was in hospital for 12 days then discharged, I was in pain but the meds kept it under control, unfortunately I’m now back in hospital as my bowel isn’t working properly ( I had to have some of my intestine removed during the surgery) it’s been really sluggish and I’ve now got a blockage and I keep vomiting. They are treating me with laxitives so hopefully things will get going. These complications are pretty normal with this type of surgery so I’m trying not to worry too much about it yet.  Good luck with your surgery, here’s a couple of things you may not have thought to pack , peppermint oil to help with nausea , lavender oil to help calm, chewing gum to get your digestive system going , something nice and comforting like your favourite blanket or pillow from home, oh and treat yourself to a fancy face cream or a little luxury x
Kylo
Posted by

Oh my gosh .. I  can't believe you're giving thoughtful advice while you're so unwell .. thanks so much, I've added your tips to my list

I'm glad your op went well but not that you're struggling right now .. I truly hope you feel significantly better very soon xxx

It's an absolutely cruddy thing we're dealing with .. stay positive & keep getting stronger .. you can do this 


Adelaide, South Australia

Flowery
Posted by

Thank you that means a lot x hopefully things will working properly soon . It is such hard work x

Amanda54321
Posted by

Hello, 

I hope you don’t mind me adding a few things that you might like to take to hospital with you. 

After the MOAS I found everything made me feel nauseous and my husband had to take away my shampoo, conditioner, shower gel, soap, deodorant etc and replace them with less perfumed products (I could tolerate citrus scents). It might be an idea to find non scented toiletries to take with you in case you feel the same as it was awful being so nauseous in the shower and afterwards as I could still smell the products on me. 

You might also want to take in a packet of anti-bac wipes as you might want to clean the buttons on your bed and tray table and door handles. I also took in a bottle of Hibiscrub and washed the shower seat with it and liberally squirted it about on the shower floor plus I took flip flops with me to wear in the shower. Having had my spleen removed and already having an auto-immune disease (Crohns) I was really careful to wipe things that other people regularly touched.

I hope that’s helpful and wish you the best for you upcoming op. 

Amanda

Kylo
Posted by

Thanks Amanda & welcome to the group!! 

I hadn't thought of any of those things so they're all on my list now..I really appreciate the help ⚘

How're you doing now? How long ago was your MOAS? 

Mine has now been postponed 2 weeks due to a more urgent case so I have extra time to prepare & get my head around it 


Adelaide, South Australia

Amanda54321
Posted by

Hi Kylo, 

My op was in May. Unfortunately the PMP is back. Had a scan in August that showed it was back in my abdomen, on my liver and lymph nodes in groin. 

I know you probably don’t have much appetite but try to put on weight before the op as you will lose a lot of weight post op. I was also advised to strengthen my heart and lungs for the op so did lots of hill walking with my dogs. 

The thing I found difficult was doing anything for myself but not wanting to ring the bell for a nurse. When you come out of ICU you’ll still have around the clock care. Then it might drop to one nurse looking after you but you may not be her only patient. When I needed to empty or change my stoma bag, for example, or just wanted my book or a drink, if someone had moved my table or cupboard away from the bed I couldn’t reach what I needed. I needed help to sit up and to get out of bed but as I said, didn’t like to call the nurse. If you can get relatives to take it in shifts to visit you once you’re down to one nurse care that would be helpful for you as I found laying there waiting for someone to visit so they could move my table back frustrating. You will feel exhausted so ask visitors to bring a book or newspaper so that they have something to do while you nap as you may find you keep dozing off. 

Also you might need an extended charger lead for your phone as the plug sockets were high on the wall behind my bed and my normal iPhone lead wasn’t long enough for my phone to be within reach while it charged. A silly thing really but when you can hardly move little annoyances become big frustrations! 

I hope I haven’t made it sound all doom and gloom. It really isn’t and it’s not forever. Within about five or six weeks post op I felt quite well. It was the first two weeks that were hard as you don’t know what to expect but it does get better. 

Amanda x

Kylo
Posted by

Flowery, how're you doing today? Have been thinking of you over the weekend and hoping you're all sorted and back home so you can rest and heal 


Adelaide, South Australia

Kylo
Posted by

Amanda I'm so sorry to hear you've gone through the surgery and all the recovery only to find that it's back again already .. how are you dealing with that? What's the next step for you? 

Luckily (??) I had an abdominal surgery already back in August and so I feel somewhat prepared for the recovery period in hospital and needing help to do/reach things .. however I am certainly expecting that this next surgery will be all that times a million so your advice is (as before) very helpful! 


Adelaide, South Australia