Friday Evening 20 June 2008

Well the house has been like Pitt Street over the past few days - more visitors than ever before and all due to the helpfulness and resources of the Palliative Home Based Community Care team.

We have had visits from the OT, the pain specialist Dr Pacl (again this man is a legend - so professional yet so caring and engaged with Peter) and the palliative and community nurses (Joan and Colleen in particular are very good with all of Peter's treatments) ; also as a result of Dr Pacl's visit we have had an oxygen concentrator machine delivered to help Peter get some oxygen when needed, a nebuliser to assist in loosening up the bronchial area, and some extra medications to assist. The house is being slowly transformed into a quasi-clinic with all the equipment as the dining room and spare room are filled with aids, equipment and medications. We have also had the first delivery of 48 tins of complete nutritional food preparation "Ensure+"

I've also had contact with a volunteer who will come to sit with Peter for 4 hours per week and we will probably start this once he comes home from hospital in a week or so. As well as that a massage therapist has been in contact and again we will see how he is on release from hospital before booking this service. These are all free and courtesy of the Palliative Care team and the ACT government. How amazing is that!! What a wonderful service - it's truly fabulous and we are both very overwhelmed.

As far as the success of the syringe feeding and the Peg tube - Peter had 2 very painful and uncomfortable nights from the site of the surgery for the Peg tube and we had one less than successful feeding situation which was as a result of the water I used from the tap to flush his tube being too cold. The dietitian said to use tap water and I did but clearly tap water at 5pm in Canberra in winter is not the optimal temperature to inject straight into the duodenum so Peter had a very uncomfortable couple of hours where he broke out into cold sweats and was in cramped pain. I felt terrible and so thought it could only be 1 of 2 things - either the speed with which I had injected the fluid or the temperature of the water and given that the discomfort started immediately following the water flush and I wasn't really rushing it, I realised it had to be the temperature. So I administered a hotwater bottle and after an hour or so it settled down but it is not a good feeling to know that you have, however inadvertently, caused the pain and discomfort of a loved one. So now I zap everything in the microwave for 10 or 20 seconds depending on volume and that makes it tepid or lukewarm which has meant no further problems.

We are still on a mingy 2 cans a day of the fluid (1/3 of the normal dietary requirement) but the dietitian has explained that to give more until the blood tests are taken next week and he is checked for his toleration of the formula, would be unwise to try to increase the intake as the body in starvation mode breaks down and utilises fats and muscle and to increase intake could be detrimental to stopping that breakdown. So it's slow and frustrating as each day Peter is drinking and eating less and so is losing more and more condition. Today, he was very weak in the shower and I had to help him whereas he was improving before the Peg tube but finding it difficult to swallow food and drink. Now the Peg tube is inserted and takes the pressure of the eating and drinking but he is losing strength as he is not able to increase his nutritional intake. I worry that he may starve to death before we get back to the right nutritional intake.

So that's it for now. Peter has to be admitted to the National Capital Private Hospital on Monday for chemotherapy and radiotherapy at Canberra Hospital. I know both of us are not looking forward to that given the toxicity of the chemicals and how totally sick they make him, but we continue to look for the ray of hope that will mean we have been able to "buy" another few months.

Cheers for now - Leanne