Roger Wales's Blog

Sad news…

rogerwales — Sat, 29 Jan 2011 11:07:35 +0000

Dear all,

I wanted to let you know that my Dad died today at 12.45pm in the most gentle, peaceful way you could ever hope for. With him were myself, my brother Jeremy, Dad’s brother Derek, my wife Phillipa and my mother Lynn.
While details are yet to be finalised, we are planning a cremation for close family, with a memorial service to follow. Details will also follow.
I would like to thank all of you for your concern, support and love, for my father and for us. It has been so appreciated by all of us.

My thanks, Phil

An update at last

rogerwales — Wed, 19 Jan 2011 23:03:07 +0000

Phil here,

We’ve been given clarification regarding Dad’s prospects. In the face of physical deterioration rather than progress over the last few weeks, the Doctors at Caritas Christi, the palliative care facility where Dad has been since early December, have confirmed that they now regard Dad as an “end of life” situation and that he will not be leaving the facility.

As the primary issue is now the fibrosis in his lungs rather than the cancer, we have been advised that he is likely to retain good mental capacity up until the last day or two.

According to the Doctors he may last up to a couple of months but may only last a week or two at the worst with “a few weeks” being the most likely estimated outcome.

Dad is, in some ways, relieved to have received a clear indication of what is going to occur and, while dealing with obvious sadness, is, I think, finding this outcome preferable to the possibility of years with no quality of life. He is also understandably anxious to get as many loose ends wound up and that is our immediate focus.

In light of his lack of strength and the likelihood of some urgent meetings regarding finalising his affairs, it is VITAL that those that wish to visit make phone contact with him prior to visiting (and should not take any rebuttal personally). Visits should be kept to no more than 20 minutes maximum for the same reasons.

a move occurs

rogerwales — Fri, 03 Dec 2010 11:41:52 +0000

Hi All,

Phil again.

Dad has been moved to Caritas Christi Hospice, a rehab/palliative care facility in Kew. The idea, as I understand it, is to give him 3-4 weeks of gentle rehab and then assess his condition from there. The hospital is noticeably quieter and more gentle in approach that Peter Mac (no criticism of Peter Mac should be implied) which I hope will suit Dad and allow him, if nothing else, some recovery from the relentlessness of the atmosphere of Peter Mac and some well-deserved nurture. I think that the novelty of care at a facility like Peter Mac was, quite understandably wearing very thin and I hope that the more relaxed surroundings will work for him.

For those who wish to make contact or visit, visiting hours are 11am-8pm and he is in room 11. The hospital is located at: 104 Studley Park Rd Kew. Tel: (03) 9853 2344

Ringing first is not a bad idea if you intend to visit as he will have various rehab appointments and will need to rest and recover between them (and we don’t have any schedules at this stage).

an update

rogerwales — Sun, 28 Nov 2010 06:38:34 +0000

Phil again,

Dad has responded well to the steroid treatment and is now on much less oxygen than he was when admitted. That said he is still on oxygen and is still very weak. The current plan is for him to be moved to another hospital (probably this coming Wednesday) for several weeks of rehab and further assessment at the end of that period.

Wrong again Honey

rogerwales — Tue, 16 Nov 2010 11:11:46 +0000

Phil reporting in.

It would appear that the positive tone of my last post may have been premature. Dad has been informed that there has been further spreading of the fibrosis or lung damage. The medics do not appear sure what is causing this and the fact that they only gave themselves a 50/50 chance of arresting it was blunt and confronting news. That said, Dad’s initial response to the 5 day course of steroids they have put him on has been positive and they have also identified a virus in his blood stream that may have been related to the worsening of his lung condition and therefore they can now treat him accordingly.

We are all essentially now in a holding pattern for at least 3 days while they wait and see if the initial positive response to the steroids is consistent. More as it comes to hand.

More news from the front

rogerwales — Tue, 16 Nov 2010 05:26:13 +0000

Hi All,

Phil again. Dad continues to be in hospital (and may be for some days yet). They are concerned about his levels of oxygen and blood pressure and are working hard to ascertain the reasons why neither of these are where they would like them to be). While it is difficult for Dad to be back in hospital, it is encouraging that these issues (which have been the main ones that have troubled him since release) are getting serious attention. It also infers that the last few weeks are not indicative of the state that the medical staff are expecting him to be in. A review will be conducted tomorrow and I will pass this information on as it comes to hand.

Another Phil update

rogerwales — Sat, 13 Nov 2010 05:33:28 +0000

Hi All.

Just wanted to let people know that Dad is currently back in hospital. While undergoing Friday’s radiotherapy session he had his vitals taken and he had very low blood pressure. While this improved over the day, they have kept him in for observation until (as it now turns out) at least Sunday. More as more info comes to hand.

not such good days!

rogerwales — Fri, 29 Oct 2010 05:02:47 +0000

On wednesday I had to head to RMH to have an impacted wisdom tooth removed. This since it was thought it could create problems when the radiotherapy started. I took forever, since it apparently had fused over time with the jaw. Still the aftermath of the delightful experience hasn’t (so far) been as painful as some predicted.

On Thursday I went in to PeterMac for an appointment with the lung specialist (Dr Lou Irving). When eventually called I followed (too) quickly, had a dizzy spell and fell. Immediately surrounded by about 15 people all doing their best for me! Eventually included two doctors down from ICU…The initial story was that I’d be kept in overnight, but fortunately Dr Kate Burbury came and bailed me out. They wouldn’t let me go without someone traveling with me, and I was lucky that Birgit was available and willing to come and do the honours.

Before that happened I did catch up with the lung specialist. He was helpful but direct. In his view the damage to the lungs in permanent and its is unlikely there will be anything but, at best, a very small improvement over time. I have to learn to walk really slowly: in his view the dizziness is precipitated by the lack of oxygen. So I have to adapt to being 50% at best in terms of lung capacity etc. Not what I wanted to hear!! But better to get the story straight..

This am I had another turn in the apartment, but later in the morning I was delivered a machine for pumping oxygen to me in the flat, and some more portable bottles for me to take with me when I go out. So I hope this helps improve the situation.

Meanwhile I have to try and adapt to the new info and its implications. Also to join those who knew him in the passing of Michael Clyne: a truly sad loss.

The radiotherapy is now due to start on Thursday 11th of Nov…

latest update (lungs teeth etc)

rogerwales — Tue, 26 Oct 2010 05:45:34 +0000

Some readers are so keen that they just can’t wait for a consolidated report! So for them:

the lung test yesterday showed that both capacity and oxygen uptake are down 50% from August levels. NO wonder I am experiencing breathlessness!! (plus it urns out that I’ve lost more than 10 kilos despite eating well all the time). More on this perhapsafter I see the lung specialist on Thursday.

The PET scan today will of course be important data: I have No idea when I’ll hear the results of that…

The Prof of Dental Oncology today pronounced that while the wisdom tooth poking through the left lower gum wasn’t a real problem for the transplant it probably would be for the radiotherapy. So I have an appointment with Oral and Maxillofacicial Surgery at RMH tomorrow morning. Specially fitted in so as not to delay healing etc any more than needed. Happy days!

I’ll d my best to report as we go, but I suspect it may not be too easy. Please be what one of my grandchildren advises (3) ‘patIent’ with the stress on the ‘ee’.

measured for radiotherapy

rogerwales — Mon, 18 Oct 2010 01:43:06 +0000

Last Friday I was summoned to measured for the anticipated radiotherapy. An interesting experience. To set the measures in ‘comcrete’ I has to lie still while a bag full of wet warm substance was placed under my head to gradually set. And the same with a porous mask over the face (and a bell in case I needed to communicate a problem).
The expectation seems that the therapy will start in two to three weeks, contingent on the findings of the PET scan scheduled for next week. Also a clearance form the Dental Oncologist, since its thought that targeting my neck may affect my dentition.
They had thought that they might also target the armpits where I had growths last year, but have decided against. This because the CTScan of a week ago revealed scarring on the lungs, and they are loath to risk adding to that. The scarring may heal but if so is likely to take some time (months if not much more, so not useful to delay the radiotherapy…)
Apart from the daily breathlessness which is obviously now expected to last a considerable while longer, I doing OK. Friends taking me to nice paces for coffee or meals. And the main general problem is booking and obtaining cabs (worst case last week, one and a half hours! But often there helpfully soon too. This is going to be an issue when I have to go in daily for the radiotherapy. Ah well. What would life be without a few challenges??