Peritonectomy Operation/survival

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Stitch
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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

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purpleangels
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Re: Peritonectomy Operation/survival

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
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Re: Peritonectomy Operation/survival

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 Smile
Gwen (Stitch)

Widget
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Re: Peritonectomy Operation/survival

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
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Re: Peritonectomy Operation/survival

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 Smile

Stitch (Gwen)

periMeso
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Re: Peritonectomy Operation/survival

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

Stitch
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Re: Peritonectomy Operation/survival

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

periMeso
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Re: Peritonectomy Operation/survival

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.

Stitch
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Re: Peritonectomy Operation/survival

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 Smile
Gwen (Stitch)

Widget
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Re: Peritonectomy Operation/survival

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

periMeso
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Re: Peritonectomy Operation/survival

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.

Widget
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Re: Peritonectomy Operation/survival

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

periMeso
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Re: Peritonectomy Operation/survival

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.

Stitch
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Re: Peritonectomy Operation/survival

I am glad you got your opp done & you have hope.
Sounds like that Bezzina House is the place to stay Smile
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

Widget
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Re: Peritonectomy Operation/survival

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

periMeso
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Re: Peritonectomy Operation/survival

At least in Australia we don't have to worry about paying a fortune for the chemotherapy drugs, thanks to the work of peritoneal mesothelioma hero Bernie Banton, who got the Australian Government to pay for them on the PBS Pharmaceutical Benefits Scheme.

The general public perception of chemotherapy is negative, but the important thing to remember is that chemotherapy is different for every person.

I found the mesothelioma drugs Carboplatin (longer and slower acting than Cisplatin) with Pemetrexed (Alimta) to be very well tolerated. No nausea or vomiting, and my hair did not fall out.

The HIPEC used during the surgery of Cisplatin and Doxyrubicin did make me shed a little hair when brushing, and it was only in the open cavity, and not even in the bloodstream.

After the peritonectomy surgery for peri meso, patients usually use Cisplatin usually 4 cycles 3 weeks apart. One oncologist told me that he didn't prefer Cisplatin over Carboplatin as there are studies to show the effectiveness of both. Another oncologist picked Carboplatin, and that is what I am going to use.

Does anyone have experience or opinion of either Cisplatin or Carboplatin with Pemetrexed?

Stitch
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Re: Peritonectomy Operation/survival

After my hipec they did 4 days of 5fu straight into the abdominal cavity.
No other treatment for me now ....
Just hope they got it all ...

periMeso
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Re: Peritonectomy Operation/survival

This direct chemo in the peritoneal cavity seems a powerful way to do it. You get concentrated chemo exactly where you need it. I was told it is not easy to do repeat HIPEC because there is not much space in the belly after the operation. I read in one study they used only one litre.

What is 5fu? A drug name?

As an oncologist told me last week, the treatment using chemotherapy for peritoneal mesothelioma after a peritonectomy is largely uncharted. We have to make decisions about treatment based on limited information.

Compared to before the peritonectomy operation my life is also a lot easier and comfortable because there is no ascitic fluid to worry about now that the peritoneum is gone.

Stitch
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Re: Peritonectomy Operation/survival

I dont know much about the medical side of things beside what I researched for my operation.
5FU is the name of chemo drug that was fed into the abdominal cavity after surgery, they used Mitomycin C in the HIPEC I think.

I had the Pseudomyxoma Peritonei PMP cancer & Peritonectomy surgery.

Most of the information that I recieved & re-shearched was written correctly on the site www.macmillan.org.uk/Cancerinformation/

In other words what my surgeon told me & what I found on this site were very similar and I showed this to my surgon to make sure what I was reading was correct.
Once I knew this was right for my surgery I didnt research much more only went for people support then ...
I didnt want to overload my worries with other sites & wrong info.

I feel quiet good ... considering what I have been through.
I am starting to strengthen my stomach muscles slowly & getting back into life ....
One day at a time Smile

Gwen

Stitch
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Re: Peritonectomy Operation/survival

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

Widget
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Re: Peritonectomy Operation/survival

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

Stitch
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Re: Peritonectomy Operation/survival

Hey Widget
Swim .. Find a heated pool & work those lungs, they are the challange after the opp.
The stronger they are before the better Smile
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

purpleangels
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Re: Peritonectomy Operation/survival

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

Stitch
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Re: Peritonectomy Operation/survival

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 Smile

Stitch (Gwen)
Xxoi

purpleangels
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Re: Peritonectomy Operation/survival

Hi there!
I will show my husband your posts....... He needs some inspiration at the moment.....
He has had two stints in hospital over the last month, one for unexplained internal bleeding (2 transfusions later and they still don't know what caused it).... And kidney failure. As his left kidney (ureter)was blocked by tumor last October and has now perished, the last thing we thought was that his right ureter would block up too...... But blocked she is..... They managed to get a stent up but are not confident they will be able to do it again......
So it looks like we will be back to Sydney to see prof Morris sometime sooner rather than later....... And another stay with Ann at Bezzina-what a godsend that place is for regional patients........
Take care!
When will someone invent a cure for this blasted disease??????
PA

Stitch
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Re: Peritonectomy Operation/survival

Its a hard yard to take isnt it.
I haven't dealt with my 47 yr old sister passing in March as yet.
I have now found out one of my cousins who is 41 has been diagnsd with liver cancer ...
and then you see the people who carry on with no hassles in their lives bbut they make trouble for others ...
Challanges we have to wok out why we get them.

I do hope your man will be ok.
Send my thoughts both of your ways ....
I think it is just as hard for the one doing the caring.
They feel helpless most of the time.
Wouldnt want either role to be wished on anyone .... Friend or foe
Xxoo
Gwen

glenys48woods
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Re: Peritonectomy Operation/survival

Hi Stitch,

You are having a bad time and I feel for you. Hope the op goes OK if you go through with it. What kind is the op also? Glenys

rainbow
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Re: Peritonectomy Operation/survival

Ha
d a peritonectomy operation last March at St. George Hospital by Prof Morris. Was 6 weeks in hospital, had a few complications but once out of hospital have never looked back. Husband and at times my grown up children stayed at Bezzini House which was a godsend. Have had 2 checkups since with Prof Morris and all is going excellent. Was at the maximum stage to have operation so very thankful that Prof. Morris proceeded with surgery. Waited 5 weeks after Angiogram and Pet scan. Have had 12 cycles of chemo since May but finally finished. This year my husband and I plan to travel to various areas of Australia. Positive attitude is very important and I now walk up to 5 kms per day, have last 27 kgs but better for it. No pain since operation so life couldnt be better. Hope it continues.

Rosey1045
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Re: Peritonectomy Operation/survival

I have been on the waiting list for MOAS at PA hospital Brisbane since January. I was referred to them last October following a laparotomy and debulking for suspected Ovarian cancer, which actually proved to be Pseudomyxoma Peritonei from Appendiceal Cancer
It seems there are only 2 hospitals in Australia undertaking this operation. The PA in Brisbane, and St George in Sydney. I have scoured the Web for information and found the UK websites very informative. I have never heard of anyone in Queensland having this type of Cancer. I am told this is very slow growing, but this doesnt do much to ease my anxieties! The waiting is endless.

Stitch
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Re: Peritonectomy Operation/survival

Rosey hi
I have had the opp at the P.A. Last year - one year exactly last Thursday the 18th
I live in Brisbane in Camp Hill - about 10 min from the hospital.
Email me and I will send you my personal email & mobile no.
Answer any questions you have Smile

Best of luck with your treatment
Stitch (Gwen)

Stitch
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Re: Peritonectomy Operation/survival

Rosey hi
I have had the opp at the P.A. Last year - one year exactly last Thursday the 18th
I live in Brisbane in Camp Hill - about 10 min from the hospital.
Email me and I will send you my personal email & mobile no.
Answer any questions you have Smile

Best of luck with your treatment
Stitch (Gwen)

Delirium
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Re: Peritonectomy Operation/survival

Hi Stitch,

My partner has been recently diagnosed with Pseudomyxoma Peritonei and he has been referred to a new specialist surgeon at the Princess Alexandria Hospital in Brisbane.

I was wondering whether you were treated through the public system, or as a private patient and what sort of waiting period you experienced for the initial consultation and then for HIPEC surgery?

My thoughts are with all of you affected by this terrible disease, patients and carers alike.

Stitch
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Re: Peritonectomy Operation/survival

Delirium
Hi, sorry you and your partner are going through this.
I was treated as a public patient.
There is no difference between the private or public patients with this operation as its the only hospital that has a theatre large enough for the hipec etc, in Brisbane, is the PA - waiting time is same for all patients.
The team there are lovely, but each patient will have their own journey.
Swim and/ or Pilates before surgery to exercise the lungs and strengthen the stomach muscles.

If you want to get in touch with me - that is fine - please send me a private message.

I had my surgery in April 2012

Gwen

Rosey1045
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Re: Peritonectomy Operation/survival

Well - I am still waiting for surgery. Admitted to waiting list in January. I am due at the PA Brisbane on 24th June for a review. Then what, I wonder. Originally told it could be midyear but nothing so far. Waiting, waiting.......

One good thing - my husband has completed his chemo (for Non-Hodgkins Lymphoma)and he feels a lot better. Due to see specialist tomorrow - Townsville Haematology. Fingers crossed.

Delirium
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Re: Peritonectomy Operation/survival

I'm sorry to hear you are still waiting Rosey. Please let me know how your review goes.

Delirium
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Re: Peritonectomy Operation/survival

How long did it take you ladies to get the initial consultation with the surgeon?

We had been waiting 3 weeks, only to find the referral not only hadn't been received but the referring specialist hadn't even written it or organised the tests requested by the PA Hospital!

Stitch
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Re: Peritonectomy Operation/survival

hi, it didn't take me long to get a referral, as I had been admitted at emergency from the beginning, so it was with the correct people right from the start for me and all tests were done at the PA.
It was caught real quick and early.
Hope yours goes through very quick
Gwen

Delirium
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Re: Peritonectomy Operation/survival

My partner has been having severe abdominal pain for over 2 years now and has been going to the Dr every couple of months for all that time. He had 3 monthly CT scans, ultrasounds, x-rays and blood tests, all with no significant results except some fluid in his pelvis and around his liver.

This was extracted via ultrasound guided aspiration and sent off for testing by pathology, but even that found nothing significant. He also had a gastroscopy done, which found nothing.

It was only when the GP threw her hands up in exasperation and sent him to see a diagnostic surgeon that we got some answers.

As soon as the surgeon saw the pathology report describing the fluid as gelatinous, he said it was likely to be a ruptured tumour of the appendix. He did a colonoscopy, which found a large number of polyps in the intestine, then scheduled a laproscopy, in order to remove the tumour via keyhole surgery.

However, when he put the camera in , he found the tumour was much larger and more aggressive-looking than he expected, so the surgeon took biopsies and didn't perform any further surgery.

One week later, we were back at his office, being told the tumour was malignant and beyond his skills to deal with. He said he was going to refer us to a surgeon at the PA Hospital, who was the only person in QLD who could perform this amazing surgery.

But now, 4 weeks later, the surgeon still hasn't written the referral and my partner is going crazy from the waiting. We are so frustrated that now they finally know what is causing all this pain, things have stalled.

If the surgeon hasn't written the referral by next week, we are going to ask the GP if she can write it instead.

Stitch
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Re: Peritonectomy Operation/survival

Oh that sounds like a long road you have all been travelling.

As far as I know the PA does one of the peritonectomy operations once a month (every 4 weeks)
When they have more funds available, they do 1 every 2.5 - 3 weeks.

They can only do this opp at the PA as it has a very large theatre room.
They require two teams of surgeons and all the HIPEC chemo equipment to fit in as well.

I was under Nick Lutton and Brian Mead.
They are the two teams that work this opperation here.

Get a referal off your GP to either surgeon.
Best of luck.

Rosey1045
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Re: Peritonectomy Operation/survival

I am under Nick Lutton and Brian Meade at PAH. Hoping to see Dr Meade next week at my review. Originally referred to them last October, and put on waiting list for surgery last January. Hoping for some answers soon!

Rosey1045
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Re: Peritonectomy Operation/survival

Hi - had my review at PAH on Monday. Recent scans show no change so am booked to see them again in December. Am still on waiting list.

Hope you are all ok.

Delirium
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Re: Peritonectomy Operation/survival

Thank you for the update Rosey.

I rang the PA to find out whether they had received the referral today, after the surgeon finally wrote and sent it 2 weeks ago.

Surprise, surprise, it "got lost in the mail", so I got the direct fax number to Dr Lutton's rooms, then rang the receptionist and asked her to fax it to that number. Hopefully it will get through and things will start moving. Waiting 5-6 weeks for a referral to get through is crazy.

In other news, I am thinking about buying a lift chair/recliner to assist my partner to stand up and sit down after the surgery. He may even sleep in it, as I know when he had his hernia surgery he was so uncomfortable laying flat in bed.

I hope you are all well and toasty warm (its pretty chilly here) Smile

Delirium
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Re: Peritonectomy Operation/survival

Good news, we have an appointment for 18th July!

Rosey1045
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Re: Peritonectomy Operation/survival

Just shows what happens when you persevere - glad for you - and not too long to wait now.
Rosey x

Delirium
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Re: Peritonectomy Operation/survival

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?

Stitch
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Re: Peritonectomy Operation/survival

Great news - one hurdle is over, the next one begins.
I agree with everything that was said.
You can only take a day at a time.
I will message you the teams names etc.
Tues you can meet me I will message you info.

You will be nervous & anxious remember support is only as far as a phone
Best of luck for all- I know how your man feels xxoo

purpleangels
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Re: Peritonectomy Operation/survival

Hey there!
Good luck good luck good luck!!
My advice to you is ask as many questions as possible before the surgery......my husband had his surgery in Sydney in 2008, and we had a very helpful clinical nurse consultant attached to the surgical team who answered heaps of questions we had via email.
On the day, make the goodbyes quick, and keep yourself busy.....watching a DVD, reading, going to a gallery/museum....somewhere you can have your phone on, but will be distracted.
My husband's surgeon called me when he had finished the first part of the surgery, then again after they had sewn him up......he was on the table for 12 hours.
Be very aware of the confronting scene that will meet you when you are able to see your partner after the surgery.
I found ICU pretty full on by myself, with tubes coming out everywhere and his chest going up and down automatically as the ventilator breathed for him.....I'll never forget it.....
And over the few weeks post surgery, just be there....don't try and make small talk, take a book and read it, a newspaper was too loud for my husband to handle......just be there.
Good luck! It is called the "mother of all operations" for a reason.
Have a some support around for you too......
Take care!
PA

Rosey1045
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Re: Peritonectomy Operation/survival

Following my review in June at PAHospital, Brisbane, I had a laparoscopy there on July 25th. Have now been booked for a Peritonectomy on November 27th. Am now trying to get as fit as possible for the event. Meanwhile, my husband had a relapse of his Non-Hodgkins Lymphoma, and is now back on another 6 months chemo.

We have our 50th Wedding Anniversary in October, and are just looking forward to celebrating it together. It looks like we will spend Christmas separately this year, but each of us will be with family. We are really fortunate in this respect. And they all give us a lot of support.

I wonder how Delirium's husband is getting on?
God Bless - Rosemary

Stitch
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Re: Peritonectomy Operation/survival

Hi Rosemary,
Great to hear 50 years - wow!
Hope your husbands treatment is easy on the body.

Glad you have an operation date, I will pop up and see you once you are here Smile
Are you swinnimg or doing pilaties to strengthen the core muscles and lungs?
What exercises are you doing?

Christmas you will still be together in thought even if you are not sharing the day at the same place.

Delirium is a lovely lady, I meet with her on Wednesday when I went up for my regular tests.
Hopefully we will get together again soon, I may take up a coffee and some knitting Smile

Stitch

Delirium
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Re: Peritonectomy Operation/survival

Hi Rosey,

I'm sorry to hear about your husband. I hope his treatment is successful.

I'm glad you have a date for the surgery. The surgical team is fantastic and very supportive.

The surgery went very well. He completed the 5 follow up interperitoneal chemo treatments and was doing very well with his physio, but a couple of days afterward he went downhill for unknown reasons.

5 days after the last treatment, he was admitted to Intensive Care and intubated. Despite extensive testing, the Doctors couldn't find any sign of infection or abnormal CT, MRI or X-Ray results. They stabilised him over the week and woke him Thursday night. They removed the breathing tubes and things seemed to be going well.

Yesterday, he was very anxious and we couldn't calm him down. Then this morning one of the ICU Doctors called me to let me know they had to put him back to sleep last night and intubate him again because his breathing was too rapid and they were concerned he was going to get pneumonia.

I feel so devastated. 2 steps forward, 3 steps back and no-one can tell me why. The Doctors and nurses are all fantastic and couldn't be more supportive or caring, but it is so hard.

I haven't wanted to post earlier, because I was hoping to give some good news. It seems like its going to be a difficult road to recovery, but even getting back to a normal ward would be a victory at the moment.

Stitch
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Re: Peritonectomy Operation/survival

Morning,
It was lovely to meet with you Wednesday, wish it was under different circumstances.

I hope that his body rests and repairs quickly.
He is in the right place, it will be harder on you, as you will be feeling helpless and that is not somewhere anyone needs to be.

Let me know if you want me to pop up for a coffee.

If you text me I will phone back when I am out of class or on lunch break if you want a chat.
Or phone after 3.30 mon, thurs, fridays (teaching days).

Stitch <3 (hugs)

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