not such good days!

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)

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

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??

two weeks on

After two weeks at home, with excellent support first from Jeremy, then Phil, Ken and now Birgit, am slowly getting better. Its a hard slog, since I apparently have excess fluid on my lungs (presumed effect from the Chemo), and so have a lot of breathlessness. The latter impedes my capacity to do much: the most I can manage walking is a few hundred yards, often requiring a break. Plus a cough that won’t go away, and I have to be careful when I get up from being seated since I have light-headedness/giddiness otherwise. But overall everyone seems sure that I am improving. Its juts hard to see when the increments are so small! So its onwards and upwards…Thanks for your continuing interest and support: roger

Home James…

Phil again…

In a very encouraging development, Dad was released from hospital today, the medical staff being very pleased with his progress and relative strength. He is still under considerable monitoring with blood tests to be carried out to determine the correct dose of Warfarin (a blood thinner to prevent clotting) to come but this can now be carried out largely via home visits.

While he still has a long and arduous road to recovery (and still has some radio therapy to come), Dad is understandably very relieved to be back home and is also delighted that Jeremy has come down from Brisbane to stay with him for a while in a caring role. To me he appears to be stronger by the day (although still with very limited stamina which will be the case for some time I suspect) and I can now venture, to those who have enquired and sent messages, that it is not so much that he is too ill to respond,  more that he is too lazy. In this I also find some room for cautious optimism…

In seriousness, it has obviously been a very, very taxing and torturous process for Dad and he has weathered it and dealt with it as well as could be expected. The support he has received from all of you has been hugely appreciated and I know that he is looking forward to catching up with all of you as soon as he is able.

Another phil update

Having had some difficult recent days, there appears to be some grounds for cautious optimism. A CT scan found some infection in Dad’s chest but the removal of his central line and some anti-biotics appear to have dealt with this. A Broncoscopy has found nothing untoward in his chest and his temperature appears to have returned to normal.

More importantly after several days of high heart rate, this has now returned to normal as well which is pleasing for everybody. It would now appear that they will keep Dad in ICU over the weekend for monitoring and, all being well, will look at returning him to the ward early next week.

Most heartening of all is that fact that Dad has been experiencing some bone soreness which is apparently an indicator that the stem cells are doing the job that is hoped for. This has given Dad some considerable encouragement and the actual soreness itself has been managed well. His spirits seem about as good as could be expected given the recent hardships and he also seems physically stronger than he was a few days ago (although a touch resigned about his projected release date – the 15th – now looking likely to be pushed back by up to a week).

Phil reporting in…again

Dad is now out of ICU and back on the ward (ward 7 currently). He has had some success keeping food down in the last 48 hours although he is still some way from being completely over digestive difficulties.

While his pulse continues to race on occasion, the staff are testing for infection and seemed confident (as of early this afternoon) that he is still free from it.

We hope that he remains out of ICU and any contact with him (email, phone or visits) are all greatly appreciated.

More tomorrow.