Sunday 13 July

Not a great deal to report since Wednesday - just lots of incremental physical/medical things.

We saw the GP on Friday and he wants to visit Peter at home on a weekly basis. Apparently he feels side-lined when Palliative care services and hospital doctors take over - a bit of a turf war it seems. However, part of me is a bit peeved about that, as Peter has consistently had to be the one to press the GP for referrals and other opinions over the past 4 years as he has missed almost everything of relevance since Peter's diagnosis in 2004 and there has been really nothing that I can think of in the way of proactive assistance.

Still it will be useful for us in the sense that if we need prescriptions etc we will be able to get them more readily and I won't have to cart Peter to the surgery, as he has said he will come to us. Now that does surprise me as they closed their Saturday morning clinic several years ago and I was surprised when I asked if they did home visits to be told they do. That's something we have never been offered and to be frank is something I didn't think they would offer, so didn't ask in the past. Another lesson learnt!

Anyway, Peter's blood test results showed he is still low in salt, protein and albumin (these latter two are due to the malnourishment and should pick up as the full feeds start to take effect). He is high in glucose and urea (the latter one due to not enough fluids, although he is getting almost 3 litres a day with the liquid feeds, so I just have to give him more water through the peg feed tube). As you would expect he is all over the place on the blood count variables - due to the chemo and radiotherapy and these are expected to readjust over the coming weeks.

We also had the community dietitian visit us on Thursday afternoon. Basically it was to go through Peter's history and check that I was comfortable with the regime, understood it and was able to have the initiative to modify things as circumstances arose. One good suggestion was the addition of a soluble fibre supplement, as well as the extra salt I already include, to the peg feeds or flushes, called Benefiber (yes, it is American and hence the different spelling). The minimum adult dose is 2 teaspoons, twice a day in 1/2 cup of fluid. I started yesterday with one dose and will add more today to get to the minimum and see how he is tolerating it. This will, hopefully, assist with bowel movements which have to be urged along with other medications if they are not forthcoming on a daily basis.

So, it is an interesting balancing act to get the right vitamins, minerals and other nutrient requirements into Peter at the moment. Just goes to show how much easier it is if you are able to eat and have a well balanced diet - the moment something goes out of alignment the knock-on effects can be very problematic (for example the seizures Peter had in hospital due to the low calcium levels).

We have had the okay to cease one drug, which helps with nausea and mood etc but can add to grogginess and foggy cognitive function and I can already notice a slight improvement in how Peter responds - just in 36 hours.

Battles still to be overcome/prevented apart from the above are: lungs and breathing (hopefully no further infection there and keeping airways clear); pressure areas (he is so thin that it is something of which I have to be aware); infection at the Peg site (we finished the antibiotics on Monday but there was a lot of yellow discharge there again yesterday) . We really have to keep that in tip top order as it is his only life line now for feeding.

I am hoping he will finally agree to me using the "spenko mattress" which we have on loan from the hospital - it is filled with wool and is a soft addition to put on top of your ordinary mattress. However, Peter hates the vinyl covering as he feels it contributes to his sweating, so I will have to devise a cunning plan to provide some absorbent layers on top, without deflating the loft of the mattress and hope that provides some assistance in the short term.)

Nothing else to report except we are both looking forward to Dr Pacl's visit on Tuesday for another review of pain medication etc. I'm not sure if I mentioned that Dr Pacl is going to keep Peter on as his community outpatient although he is moving to work in the hospitals from this month. This is a great thing for Peter and we are both really touched that he would keep us on (at the urging of one of our lovely Pall care nurses, I think).

I am fine and getting the routines under control. It certainly is a full time job - all hours of the day and night, but I can often get a couple of hours in the afternoon to read or catch up on sleep, emails etc which is positive.

For those of you asking about my mother. She started radiotherapy (30 or 35 treatments) on Tuesday at Nepean Hospital and these will go on for 6 or 7 weeks. I understand from my sister that it was an adenocarcinoma and there was only 0.5 millmetre from the tumour at one part of the site and they couldn't take any more from there. So I am concerned as this was exactly the same for Peter, (both the adenocarcinoma and the size of the buffer zone). I only hope this one can be treated more readily and responds well as I would hate for my poor mum to go through what Peter has had to deal with. Luckily, my exceptionally competent sister, Narelle, who is the scientist in the family, has been marvellous in being the advocate and transport for my parents and will continue to do so.

Anyway, that's all from me for now. Until next time - au revoir. Leanne