Peritonectomy Operation/survival

[Rosey1045]

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]

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) 🙂

[Delirium]

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

[Rosey1045]

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

[Delirium]

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?

[purpleangels]

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

[Stitch]

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

[Rosey1045]

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

[Delirium]

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]

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 ❤️ (hugs)