Peritonectomy Operation/survival

[Stitch]

Hi has anyone heard of a Peritonectomy operation? It is a real biggie - described as the mother of all operations. I am not looking forward to having this opp. I would like to know if there are any survivors out there who have had one? Stitch

[purpleangels]

Hi there! My husband had a peritonectomy on December 2, 2008. He is still hanging in there. He has a very rare cancer that is made even rarer by the place he has it- wait for it- epithelioid haemangioendothelioma...... In his peritoneum. They took his peritoneum, omentum, loads of large and small intestine (colostomy for 6 months after), gall bladder, appendix, diathermied his liver, part of the rhs of his diaphragm..... And a few other bits and pieces. He had chest drains, abdo drains, high levels of pain killers after the op but was out of hospital in 3 weeks. His main issue to date has been with pain ( unexplained) so is on pretty heavy doses of morphine and oxynorm. He was 35 when he had the op, has lost heaps of weight but really struggles mainly with depression caused by the chronic unexplained pain. He had his op done at st George with a fabulous team. It is the mother of all operations, but having a positive attitude helped (sounds cliched) ...... Good luck! Good luck! Good luck! Ask any questions if you want further info..... Cheers! Purpleangels

[Stitch]

Thank you for the information. it is hard when not manyhave had this kind of opp & there is not much positive research. I will message again soon. Have people here at the moment so cant chat much & have to work tomorrow :-) Gwen (Stitch)

[Widget]

Hi Stitch I am Widget and I am also going to be having the peritonectomy op soon. We should compare notes! I found a great blog just recently by a guy who had the surgery and is two years cancer free. His blog is oncoloblogy.blogspot.com. This guys doctor must be amazing, the doctor has dictated his whole operation to be recorded and given Dan access to the records. Very graphic but if you want to know what happens this is it. Hope to talk to you soon Widget (Juanita) xx

[Stitch]

Purpleangels & Widget, Thank you for replying. PA.Your husband has had a hard time through his opp & recovery. I do hope you both get through ok. thoughts are with you both. Widget, I have not found any sites for support of peritomectomys. I have googled & found lots of info regarding the opp procedure & some survivors blogs. I have just turned 50 so I know I have a struggle ahead of me. Chin up & just deal each day by day. I am lucky that I work from home doing dressmaking & alterations, bridal & teaching etc. I work casual 2 days a week at a TAFE - so I know I will lose many hours there for quiet a while. I worry about my husband & how this will affect him emotionally. He like Purpleangels will have the largest battle. I will be in a drugged state for a few weeks (well I hope I will be)lol I think we both will be able to learn a lot from Purpleangels to look at this from the other side of our journey - the struggle that the carer goes through. Who CARES for the CARER? I know with my father passing from lung cancer how hard it is on family memebers. I also have at the present point in time my 47 yr old sister cying of secondry cancer from her breast cancer 11 years ago - yes she was young thenn too. I fly back to see her for a week the day after I see the surgon & chemo specialists next. I will have to say bye to her as i wont be able to see her once the opp happens. So many challanges are in front of us. Best of luck with your husband Purpleangels Best of luck with your up coming operation Widget prayers & thoughts for you all xxoo I have sent a friend request to both of you & let you know my email as well :-) Stitch (Gwen)

[periMeso]

I did the peritonectomy this year 2012 too at St George Kogarah.

[Widget]

Hi periMeso How is your recovery so far? I am going over in a couple of weeks to have an angio ct and my surgery scheduled if they go ahead. How long did you go over to NSW for? Did you take anyone with you? I hope you are feeling stronger every day. Widget

[Stitch]

Hi Widget, I am now 10 weeks after my opp - today I am allowed to lift over 5kgs - yipee ..... The chemo in the abdominal cavity softens the internal stitches etc so you cant do anything - boredom - well not really as it is a long recovery. I had all my opp & treatment in Brisbane at the P.A. Hospital. 3 weeks in hospital, as normal. When I first came home I slept slept slept etc Wasnt eating much at all - was on high calorie/protein diet. have only been for a walk around the shopping centres twice since I got home - takes it out of me. I get sore back muscles from holding up the body - stomach muscles not working too much yet. I have read books, done puzzles, watched movies - walk out to the letter box & try to go down the road but we are on a hilly street so I dont go too far. The hospital said it is a slow recovery from a peritonectomy - & I have to agree with them. I am a person who is always busy & never stops - well I really have stopped & rested now. Looking forward to starting pilates class in a week or two - strengthen the core muscles. Then I will put my sewing add back in the local paper & get the ball rolling back into life. Hope all your tests & surgery go well I swam for weeks before surgery to strengthen my lungs - that helped heaps I think, as I recovered the lungs quick & they were strong. thinking of you Stitch

[Stitch]

Hi PerMiso, What month did you do your opp? I am now 10 weeks after my opp. I had it done in Brisbane at the P.A. Hospital

[purpleangels]

Hi Stitch!!!! Have been wondering how you are going!!!! Have been checking on here regularly to see if you are back.......hope you are recovering well......positive vibes coming your way......take it easy.......PA