Peter has been discharged from hospital - 5 July 08

After finally getting the necessary equipment to enable overnight feeding to be done at home, Peter was discharged from hospital on Friday 4 July. He has now been home about 28 hours and we are starting to get back into the routine of daily care.

The first 1/2 of the day is intensely busy- starting from about 7 or 7.30am and it is flat out until at least 10.15am - the overnight feeding tube has to be removed, flushed with water then 7 medications are given individually crushed and with plain water flushing in between; then comes the shower and dressing and another feed through a syringe at 10am. In between I fit in my breakfast and shower and then we are ready to face the day. The palliative care or community nurses attend at around 11.30 and on the days when all the dressings need to be changed they are often here for 1 to 1 and 1/2 hours. I have lunch, then another feed at 2.00pm with a 3 and 1/2 hour break until 5.30pm, when I get the next range of medications ready and then hook up the tube feeds at 6.00pm and then the next one at 10.00pm which runs through the night. So that's enough to get me into bed soon after the overnight feed tube is running. Then I wake to get Peter oxygen or the neubuliser if he needs it and to help him go to the toilet as the feed pole (like an IV drip pole) needs to be moved into the ensuite and I am concerned he may trip.

So far Peter has had 10 of his 12 radiotherapy treatments with the last 2 on Monday and Tuesday this coming week. After that the plan is that he will have bloods taken at the end of the week and be reviewed in 3 or 4 weeks by Dr Yip and Dr Austen, the 2 oncologists.

On Thursday evening, Peter asked Dr Yip what the plan was and how he would know if he was improving or how he would measure the progress to the outcome (whatever that might be) - always the "project manager". Dr Yip said that the aim of this treatment is to make Peter comfortable and to try to allow him to have more capacity to swallow, so the relative success is whether he can start to take soft foods at some future stage.

Peter also asked what the prognosis was - "Do I have 1 month, 5 months or 15 months?". Dr Yip said that he didn't know as Peter's tumours hadn't really behaved like others of this type and he hadn't thought he would necessarily last this long, but that it wouldn't be 15 months. This knocked us both for 6 all over again as we have constantly seen, over the 4 years, some small signs of improvement and he has come back from being this low before.

So we are both feeling very low. It's hard to hear that there is little hope of anything except making things as comfortable for Peter as possible. Peter has said to me today: "There's no way back from this and I am sorry." He is feeling like there's little hope now and yet he and I both desperately want a cure and for him to return to normal. While it's been important for us to know the reality, it's hard to hear it and do anything with it apart from feeling depressed and tearful once more in response to it.

Peter has been spending most of his time sleeping and is very physically weak so there really isn't much that he is able to do except lie in bed or sit in the recliner chair. The "quality of life" that the treatment will give him really relates to his swallowing and keeping the cancer at bay for a while - both of us are unsure whether he will be able to reclaim some semblance of independent functioning but I keep hoping.

Thanks for the emails, SMS messages and phone calls. For those of you wondering, the best times to call are between 8.30am and 8.30pm (Australian Eastern Standard Time). We had a nice call from Peter's cousin, Andrew, in New York this morning, which was really wonderful and very welcome, but receiving it at 4.50am was a bit difficult. If we are here I'll be happy to talk and if it's not a good time, I'll let you know and call back another time. I'll write again in the middle of the coming week and let you know how we are getting along. Cheers for now -