Hi Rosey, The Drs discharged Luke from hospital on Friday afternoon, but asked us to stay in the apartment across the road from the hospital over the weekend, in case there were any problems. Everything went smoothly and we attended the outpatients clinic on Monday afternoon to get the final OK to go home. The surgeons want to review him in early January and will set a date for the stoma reversal then. We got home late Monday evening. It is still very up and down, but Luke is gaining weight and strength. He is still quite nauseous and is constantly exhausted, but he is working hard on putting on weight and rebuilding his muscles. There is lots of work for me to do, as he can still only have thickened fluids and pureed food and he has to eat every couple of hours, because his stomach has shrunk so much from not eating in over 2 months. He also needs to eat frequently because so much of his digestive system has either been removed or disconnected that it doesn't absorb as much nutrition or fluid as it should. He is being seen as an outpatient at the local hospital by the dietician, physio and speech pathologist. Hopefully they will approve him to eat and drink normally on Tuesday. Still waiting on Queensland Health to reimburse me for accommodation expenses. I hope your husband is doing well and your own treatment goes smoothly and by the book. Best Wishes Delirium ... View more

Hi Rosey, A lot has happened since the last time I posted. Luke continued to struggle with his breathing and after being reintubated for the 4th time, the Drs decided to do a tracheotomy in order to get him off the ventilator. He was released from ICU on 16th September, a month after he was first admitted with the delirium, extremely rapid heart rate and fevers. The surgeons came to see us and basically said it was a miracle he is still alive and the reaction he had to the chemo has been completely unprecedented. He has lost 18kg to date and was extremely weak after spending a month in ICU bed bound. In the last 2 weeks, he has been getting stronger and can sit and stand unassisted. We are hoping he will be allowed to start eating this week and possibly have the tracheotomy removed by next week. After that, we might be able to get Luke transferred back to a Toowoomba hospital. I know hearing about all the problems Luke has had won't be filling you with confidence, but surgically everything has gone perfectly. The surgical team have been fantastic and the nurses in both ICU and the ward have been amazing. The social worker has worked wonders with Qld Health and Centrelink. I hope your husband is doing well with his treatment. Please let me know how you go with your checkups and rest assured you will be in good hands. ... View more

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. ... View more

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? ... View more

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

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) 🙂 ... View more

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. ... View more

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! ... View more

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

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. ... View more