https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8211#M2761 We received a phone call this morning to advise us that my partner's surgery has been scheduled for 7th August. We have to go back Monday and Tuesday to meet Dr Lutton and the colorectal surgical team. Things are moving faster than we expected. Last week, the Doctor we saw advised us that it may have spread to the liver, colon and peritoneal wall and I assume this is why the surgery is happening so soon. I have booked myself accommodation for 3 weeks in the hotel across the road from the hospital and am going back to the local hospital tomorrow to file the latest claims for the Patient Travel Subsidy Scheme. I have also gotten forms from Centrelink for Carers payment/allowance for myself and Sickness Allowance for when my partners sick leave runs out. Feeling nervous and anxious. Does anyone have advice about what else I should do? Tue, 23 Jul 2013 04:14:43 GMT Delirium 2013-07-23T04:14:43Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8167#M2717 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 Tue, 07 Feb 2012 03:07:58 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8167#M2717 Stitch 2012-02-07T03:07:58Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8168#M2718 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 Tue, 07 Feb 2012 09:48:47 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8168#M2718 purpleangels 2012-02-07T09:48:47Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8169#M2719 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) Tue, 07 Feb 2012 09:53:20 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8169#M2719 Stitch 2012-02-07T09:53:20Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8170#M2720 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 Wed, 08 Feb 2012 23:30:42 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8170#M2720 Widget 2012-02-08T23:30:42Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8171#M2721 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) Thu, 09 Feb 2012 00:37:12 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8171#M2721 Stitch 2012-02-09T00:37:12Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8172#M2722 I did the peritonectomy this year 2012 too at St George Kogarah. Tue, 26 Jun 2012 18:00:09 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8172#M2722 periMeso 2012-06-26T18:00:09Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8173#M2723 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 Tue, 26 Jun 2012 23:55:10 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8173#M2723 Widget 2012-06-26T23:55:10Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8174#M2724 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 Wed, 27 Jun 2012 00:37:52 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8174#M2724 Stitch 2012-06-27T00:37:52Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8175#M2725 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 Wed, 27 Jun 2012 00:39:49 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8175#M2725 Stitch 2012-06-27T00:39:49Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8176#M2726 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 Wed, 27 Jun 2012 04:19:02 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8176#M2726 purpleangels 2012-06-27T04:19:02Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8177#M2727 Hi PA, I have had a long slow recovery. It has been a hard one as I have actually HAD to stop. I have read so many books done puzzles & slept. I have only got in to doing my course assignments over the past few weeks. The brain seams to have kicked in lol. It still takes me a bit to do things but I feel I am getting much better. I can see life around the corner again. We are also looking at some travel plans .... Where to go .... What to do .... How have you been travelling? I gobin to hospital in a week or two to see a lass who will have just had her peritonectomy. We are starting little group here in Brisbane. Support each other... Have a coffee morn. There are 5 of us at the moment. 3 have had the opp & 2 are about to have one .... All good & positive :-) Stitch (Gwen) Xxoi Wed, 27 Jun 2012 04:28:07 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8177#M2727 Stitch 2012-06-27T04:28:07Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8178#M2728 Hi Stitch, It has been a couple of months since the peritonectomy, and I am making an effort to drive to the shops every day and walk around. The back and shoulder muscles are getting stronger, so I know this is good pain, and I am slowly reducing the endone. The slow release equivalent oxycontin probably doesn't stay in the stomach for 12 hours, as I have seen other things go through much faster, like fruit in an hour, before coming out the illeostomy. I was only aware of St George Kogarah and Professor Morris doing the peritonectomy in Australia. I know people come from Western Australia New Zealand and South Africa for the procedure. I did meet a woman from regional QLD who loves the Professor for the effort he has put into her multiple surgeries, and for giving her life and hope when others said there was none. I come from NSW outside Sydney, so being able to stay at Bezzina House before the operation was great, across the road from St George, available to cancer patients and families for $43 a night. Wed, 27 Jun 2012 07:05:13 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8178#M2728 periMeso 2012-06-27T07:05:13Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8179#M2729 Things are good after a couple of months, I have no complaints about anything at St George Kogarah NSW. I first went home to family after about 3 weeks, but had a cyst in the abdomen which caused a fever from post operative sepsis shortly after leaving hospital. I was transported back to St George from another Sydney hospital, where they fixed me up in another 2 weeks. Because it is such a large operation, you have to give the body time to heal. They are very experienced at St George Kogarah at picking healing problems early and treating them. It is handy to have someone staying with you at Bezzina House on the night before the operation, so they can take your bags on the day. Otherwise they are reluctant to make a list of the contents and look after them for you at the hospital. Cancer patient family and friends can continue to stay at Bezzina House for $43 a night. The angio CT scan can be a good trial for the operation. You need to stay with someone overnight after the procedure, I went to family in Sydney, but could have stayed with someone at Bezzina House. Wed, 27 Jun 2012 07:25:22 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8179#M2729 periMeso 2012-06-27T07:25:22Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8180#M2730 Hi Thanks for your reply. It is good to know you were happy with the Hospital. I had surgery in March and also got a cyst. I hope I do not get one this time! Great info about Bezzina House, I did wonder about that. What happened after your surgery? When did you come back to WA and did they give you the pathology results? Do you go back to 'watch and wait' scans? Sorry for all the questions! Widget Wed, 27 Jun 2012 07:38:23 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8180#M2730 Widget 2012-06-27T07:38:23Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8181#M2731 Hi Stitch Great news! I am glad to hear you are recovering, although slowly. Surgery really knocks you about more than you think. I hope you continue to feel better every day. I will let you know when I am having my op, sounds like probably August. Take care. Widget Wed, 27 Jun 2012 07:45:22 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8181#M2731 Widget 2012-06-27T07:45:22Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8182#M2732 Oh wow I know the hospital in Sydney was the main one in Australia, but didnt realise people flew in from NZ etc as well to have it done there. The P.A only does 2 opps a month as it is the general hospital. You must have had your opp about the same time as me then as I am only 10 weeks out. I am well off the pain killers, but let the normal day to day pain tell me how much to do. I came home with a pain patch & endone to follow up as well but got off them as soon as I could so I knew how much pain I had or knew when to stop doing something. I was lucky & did not get an illeostomy but knew there was a 98% chance of having one. They took more bowel though. Hope we both get on with life as normal as possible. Here's to our recoveries :-) Gwen (Stitch) Wed, 27 Jun 2012 08:05:50 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8182#M2732 Stitch 2012-06-27T08:05:50Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8183#M2733 I returned home from St George Kogarah to regional NSW after the operation, but it would have been similar if I had come from interstate. They do get a lot of patients from WA. I don't know how I would have got to the hospital at 6:00am for the operation, unless I had been staying across the road at Bezzina House. As the sister of another patient staying there said, Bezzina House is a real haven. The surgery removed all the mesothelioma they could see, and the heated chemo during the procedure worked on the smaller stuff. Apparently mesothelioma doesn't give off chemical markers, so there is no blood test to tell if there is any left after a couple of months. I am about to start 4 cycles of IV chemo back home, and it is the same well tolerated carboplatin and pemetrexed as I did before the operation as palliative care. We will do more CT scans after this chemo. I am so glad I sought out Professor Morris at St George, because after the surgery there is hope for a recovery. After the peritonectomy I have a chance at life after peritoneal mesothelioma. Wed, 27 Jun 2012 08:15:12 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8183#M2733 periMeso 2012-06-27T08:15:12Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8184#M2734 I am glad you got your opp done & you have hope. Sounds like that Bezzina House is the place to stay :-) i am lucky that we only live about 10 min from the hospital that did my opp. I was admitted the night before. I had the HIPEC and 4 days of chemo internally as well. I go back for my check up on the 6th August, hope all has gone well. The surgeons were happy with the operation - that is pretty much all I know so far. Chin up - kick back & enjoy what we have. Gwen Wed, 27 Jun 2012 08:26:23 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8184#M2734 Stitch 2012-06-27T08:26:23Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8185#M2735 Thanks for reply. I am happy to hear you sounding so positive, surgery and chemo is not easy. But I'm with you, if we are given an opportunity for life after disease, go for it with both hands. All the very best for your continued improvement! Widget Wed, 27 Jun 2012 08:59:20 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8185#M2735 Widget 2012-06-27T08:59:20Z https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8186#M2736 Hey Widget Swim .. Find a heated pool & work those lungs, they are the challange after the opp. The stronger they are before the better :-) Resting I found hard as I am a doer .... Always on the go lol But now I think I have rested enough. .... But with this cold weather I could easily crawl back into bed lol. I lost quite a bit of weight. Some have said they lost 15 kilos. I lost 8 kilos but hopefully am putting on now. Go up & down by 0.4 a day lol. Hope I sit steady there now ..... Onwards & upwards ...... One day at a time ..... Best of luck mate xxoo Gwen Wed, 27 Jun 2012 09:27:45 GMT https://onlinecommunity.cancercouncil.com.au/t5/Treatments-and-side-effects/Peritonectomy-Operation-survival/m-p/8186#M2736 Stitch 2012-06-27T09:27:45Z