Hi Drizzabone   Great strategy to get a consult with Prof Morris. He is clinically the best that the southern hemisphere can offer in abdominal type cancers especially appendix. His manner is quite abrupt but he really is the best.  With the ascities, yes I had this badly. Thou I had it after my peritonectomy. I had my big op, then started  chemo 6 weeks later. The ascities really built up after my 1st chemo session. My oncologist organised an ultrasound where they could diagnose & confirm that my pain/discomfort was due to ascities. Then I had a small procedure at the hospital to have a abdo drain inserted to drain the fluid build up. This was done under local anaesthetic & I was only in hospital for the day. They drained almost 3litres of fluid. I then went home with that drain which continued to drain the fluid.  So if your sis is really uncomfortable, then best to agitate and request to be seen & assessed. So that action can be taken. Ascities is awful but it’s common and it’s easy to treat with a tummy drain.  Im East side so I’m happy to chat more when I’m home or answer any questions via here in the interim.  Ginni ... View more

Hi Drizzabone,  Sorry to hear about your sister. That’s hard. 😞   Yes I’m free for a chat. I’m up north on holidays at the moment. We get back on Sunday. So I could chat next week? Let me check in what days I’m working next week. And I’ll contact u Sunday & let u know what day I can talk. Does that work? Ginni ... View more

I’m so sorry to hear this. As a fellow cancer sufferer and a mum, reoccurrence is what I am most scared of. No one can tell you whether you should have or shouldn’t have treatment. That is your decision and I’m sure you have thought deeply about what to do. I think as a community and I think the medical world always says “oh of course, you should fight it!”, but sometimes that broad statement doesn’t allow room for the individuals suffering and anguish. All I can offer is I hope you come to a place of great peace in your decision. Maybe you need to reach out to a trained Psychologist specialising in illness/mortality to help you navigate this tremendously hard road. I wish you all the very best.  ... View more

Also FarmGirl - just to add: the hot chemo that they put into your tummy during the peritonectomy doesnt cause your hair to fall out. You will keep your hair thru all this. 🙂 ... View more

Hi FarmGirl   So a peritonectomy is quite an individual operation as it depends on the extent of your cancer. My cancer was extensive so my op was big(10 hours). But this may not necassarily be your experience if you have less cancer. In my 1st op I had my appendix and ovaries removed. Then a month later I had the peritonectomy and had uterus, gall bladder, half of my large bowel, omentum and some of my small bowel removed. For me it wasnt a choice as without surgery I would have died. So no choice for me then!   To answer your questions:  - I am feeling well now. I am 9 months post op. I go to the gym 3 times a week and walk/run 2 times a week now. (Today I ran a slow 5km, yay!) I started the gym in May so that was 6 mths post op. I have energy and feel good now.  - My life has returned to normal physically. But my life hasnt returned to normal emotionally. I think for many cancer sufferers this is pretty typical. I struggle emotionally with anxiety/fear that the cancer will come back. And that fear is with me 24/7. That is the hardest part for me. The emotional toll rather than the physical toll. I also have a temporary ileostomy bag and I hate it!  I am hoping the bag will be removed surgically this year and my bowel will be joined back together again. I will be much happier when my ileostomy bag is removed. Living with a bag is a drag!!   - if you receive the standard bowel chemo treatment you will receive FOLFOX after your surgery. I had 2 months gap between my perotonectomy and when my chemo started. The FOLFOX chemo thins your hair, but it doesnt make you go bald. My hair thinned but only I noticed it. No one else noticed it. I had 12 cycles of FOLFOX chemo from Jan to July administered very 2 weeks or so. From the chemo, I had fatigue and peripheral neuropathy (nerve pain in the hands and feet). I had no nausea or vomiting, so that was good. The 1st 6 cycles were hard. But then they reduced my chemo dose and the last 6 cycles were a little easier.  - My bowels havn't returned to normal as I still have my horrible ileostomy bag. I'm really looking forward to being able to do a normal poo!!! Gee the things ya miss 🙂   Do you know if you will get a temporary ileostomy?   Please feel free to ask me any questions. No qu's are off limits. Its a big op but it gives you the absolute best chance of success. Most people are "back to normal" after 3 months from the op. (But chemo may impact that timing, as chemo can knock u round.). Wishing you all the best.      ... View more

Hi JenWren   Sounds like you've had a very long road in getting to the point where you are finally getting the treatment you require. It can be so exhausting getting the right diagnosis, cant it?   What is your primary cancer in your tummy, if you dont mind me asking? Mine was appendix cancer which spread its merry way around the abdo area. I make a joke to my husband that the operation Peritonectomy is like a shop "Closing Down Sale - everything must go, everything is out the door!!" So anything in my peritonel area with cancer that wasnt critical for "active living" got removed.   You asked about weight loss. Yes I have lost about 8 kg since my op end Nov. I wasnt heavy to start of with, so I am now 50kg and very skinny looking. I hate being this skinny - I feel like a real Bony Maloney!   When I was in hospital, after the op - they had me on TPN - which stands for Total Patient Nutrition. Its basically a bag of liquid, high nutrition food, that went into a central line in my neck. This ensures for the few days after the op when I wasnt eating - I was still getting good nutrition. I suspect you might have this as well.   However once the TPN came out, I had to eat for myself and thats when I lost most of my weight.   You also asked about my ileostomy bag which I'm told is temporary. I start 6 months of chemo on Monday (which I am dreading). Once the chemo is finished they will reverse my ileostomy bag ie remove it and in a small op - reconnect my bowel. So hopefully by the 2nd half of 2018, I will be bag free.   I find living with an ileostomy to be quite challenging. Its not so much changing and emptying the bag. I can get my head around that. Its more managing the output. So my ileostomy is proving to be super efficient. And any food I eat - and I'm eating a lot now - all the nutrients get passed too quickly into the bag. Meaning I'm not putting on weight which is frustrating - cos I'm eating well.   I think I've turned the corner on this though after about 6 weeks of trial and error. I'm working with the Dietician and Stoma Therapist and I think now I'm slowly putting on a bit of weight, which is heading in the right direction.   I'm wishing you lots of luck for your Laprascopy 1st Feb. That procedure will give a much clearer idea of what needs to be removed. Its great that you have faith and confidence in your Surgeon. Thats so important. I was the same. I knew that the surgeon I had, was very very good at what he does.    Here's hoping after 1 Feb, you get a firm action plan and a date for surgery. That was one of the hardest parts for me. Knowing I needed surgery but waiting for the hospital to confirm a date. It was very stressful!   Anyway, its 1 step at a time for you for now. And Laprascopy is all you need to focus on, right now.   And dont hesitate to keep asking me any questions that crop up   All the best ToughChick ... View more

Hi there I had a peritonectomy 30 Nov at St George Hospital. There is no denying - it is a big operation.   I am a 52 year old mum. I have appendix cancer that has spread throughtout my peritoneum. It was diagnosed in October 2017. I am still reeling from the shock.   In Oct I had my appendix and ovaries removed. Then end Nov I had the peritonectomy and Prof Morris removed my uterus, fallopian tubes, gall bladder, some of my large bowel and some of my small bowel. I now have a temporary ileostomy bag which I hate (to be completely honest)   I am now 6 weeks post op and home. I am now pain free, sleep well at night. And during the day have enough energy to get oout of the house for 1 activity for a few hours.   I would be very happy to answer all and any questions you have. No question is off limits. I will answer anything.   It is a big op but you will get to the other side and you will get through it.   I am here if you need me   ToughChick X ... View more

Thank you kj for your reply.   You are so very true when you say "you may be surprised of the strength and courage inside of you that you can draw on in this life crisis. Mothers are very strong when something comes between them and there children."   This is absolutely right and its so good to be reminded of this - so thank you for your comment.   Its easy to feel weak in the face of cancer but I am trying to gather all my mental, physical and spiritual resources to fight this. I dont want to feel powerless. I want to feel powerful. And I'm sure this is something you must have felt.   I wish for us both longevity and old age.     ... View more

Oh how special kj! I am newly diagnosed with appendix cancer and am awaiting treatment. The wait for surgery is very hard. My surgery is like a whipple, its called a peritonectomy and basically they remove everything that they can in my abdo cavity - sounds horrific. I'm a mum of 2 beautiful kids and am terrified to my core. Do you have any insights as to why you have made it to this 7 year anniversary when others haven't?? What makes you different and lucky? Has your Oncologist been able to articulate this? I'm looking for hope and hoping to replicate your good luck. Thanks so much 🙂 ... View more

Thanks for your post. I'm recently diagnosed with a horrible aggressive appendix cancer and I gained a lot from your experience & wisdom.   XX ... View more