As usual in November we bought Early Bird tickets for the National, fortunately not for all five days but for two unspecified days each. We went on Friday and met up with Jocelyn and family who had planned to go to the festival that day then join friends camping in a national park where the adults could celebrate one of their company's 40th birthday and the children could run riot generally.
It was lovely to catch up with Jocelyn, Jason and grandkids (2 y.o. Vida is growing apace) as well as to enjoy some of the festival's music and other attractions and meet some friends. You fill up on a year's worth of good vibes as everyone has a smile on their face and a friendly word. The atmosphere is perfect and it did Philip the world of good, taking him out of himself.
We ended up going again on Sunday (we especially enjoyed the Great Poetry Debate) and this time Philip was able to do without the wheelchair which is not especially easy to push across sloping gutters and grass. His walking is quite slow and he needs a steadying crutch.
Hopefully the anti-cancer drug which Philip will have been taking for 2 weeks come Thursday is beginning to work. He is not spending as much of the day sleeping so that is definitely an improvement.
Monday 28 March 2016
Wednesday 16 March 2016
#16 - 17 March - Progress? or going backwards?
Philip had his most recent oncologist consultation yesterday. He feels he has gone backwards since pausing the Tarceva (specific anti-cancer drug) treatment for the past two weeks. He is extremely weak, pain has increased, he struggles to even sit down (has lots of extra cushions) and everything including breathing is an effort. He is still wobbly on his feet and once again requested a wheelchair because he didn't think he could walk from the lift to the consulting room.
He has now recommenced Tarceva at a lower dose than before, a positive result is hoped for within 3 or 4 weeks. He is to discontinue the steroid Dexamethasone which could have had a role in muscle wastage.
Dr Ali could see that his upper body muscles have atrophied. This contributes to his weakness and breathlessness and Dr Ali thinks there will not be improvement until he starts an exercise program.
He is to be assessed for a University of Canberra cancer group for gym; this is run, like my Lungs in Action, by Exercise Physiology students under supervision. The assessment is booked for 5 April.
Philip will be given an individual program which will change from time to time according to his capabilities.
He also visited the Institute of Sport pool and has taken out a membership there, although so far he only used the spa. I believe and hope they pay due attention to hygiene and maintenance but worry about hot spas generally and their potential for passing on bugs.
Philip is to have an ACAT assessment - also on 5 April - to access some extra Home Help, possibly for the meals that Philip used to be responsible for. We used to share 3 meals per week each, with Sunday being the day for clearing the frig of leftovers or cooking something minimal.
From tomorrow I will be away for a long weekend at Edrom, an old Victorian mansion on Twofold Bay. Around 30 women have been hosted by the Eden Spinners every March for over 20 years and it is a weekend of renewed friendship, good food, talk, laughter, walks, swims and craft activities. I am looking forward to it as I have been feeling a bit run down and my peripheral neuropathy, dormant in my feet for over a decade and only a bit of a nuisance in hands, has come back.
Yesterday I spent cooking meals so Philip will feed himself with minimal effort and he can call on whoever is home in our townhouse complex if he gets into strife over anything. Residents here have been marvellous with moral and practical support, even a roster for a much-appreciated weekly meal.
He has regained a little of his lost weight and is now over 60 kgs.
Lisa has had problems over the past couple of weeks. First was a leaking shower tap which required a plumber to come and fix. Then her security door, which a neighbour had shoved in in an ice-fuelled rage, was replaced but the lock developed a glitsch and Lisa locked herself into her flat without, as usual, any food. Finally, today there was a disturbing incident involving the same neighbour: someone got knifed, there was a lot of blood, swearing and shouting, and it ended with the police taking him away after a lengthy interview. He is a Housing Trust tenant and their Complaints department refused to even hear about it because Lisa did not get knifed, the person who was knifed had to make the complaint - which would be quite difficult if he were dead! (This attitude is the same as that of the police which told me that every individual car owner in the street had to put in a complaint after the same guy had bashed in the doors of four or five cars parked in the street.)
Life is full of medical appointments but thank goodness we are able to access them easily, it would be very hard for folk living in non-metropolitan areas. For the next six months I am taking part in a UC Science research project on lungs and propensity to infection, and will also help out Physio students for a supervised learning activity (only one day, thank goodness), while the annual Lung Education Day is soon. We do manage to get to concerts and movies but meals out and anything more strenuous have been put in the 'pending' basket.
Next oncology appointment will be at Canberra Hospital on 11 April so will update blog after that.
Cheers, Maureen
He has now recommenced Tarceva at a lower dose than before, a positive result is hoped for within 3 or 4 weeks. He is to discontinue the steroid Dexamethasone which could have had a role in muscle wastage.
Dr Ali could see that his upper body muscles have atrophied. This contributes to his weakness and breathlessness and Dr Ali thinks there will not be improvement until he starts an exercise program.
He is to be assessed for a University of Canberra cancer group for gym; this is run, like my Lungs in Action, by Exercise Physiology students under supervision. The assessment is booked for 5 April.
Philip will be given an individual program which will change from time to time according to his capabilities.
He also visited the Institute of Sport pool and has taken out a membership there, although so far he only used the spa. I believe and hope they pay due attention to hygiene and maintenance but worry about hot spas generally and their potential for passing on bugs.
Philip is to have an ACAT assessment - also on 5 April - to access some extra Home Help, possibly for the meals that Philip used to be responsible for. We used to share 3 meals per week each, with Sunday being the day for clearing the frig of leftovers or cooking something minimal.
From tomorrow I will be away for a long weekend at Edrom, an old Victorian mansion on Twofold Bay. Around 30 women have been hosted by the Eden Spinners every March for over 20 years and it is a weekend of renewed friendship, good food, talk, laughter, walks, swims and craft activities. I am looking forward to it as I have been feeling a bit run down and my peripheral neuropathy, dormant in my feet for over a decade and only a bit of a nuisance in hands, has come back.
Yesterday I spent cooking meals so Philip will feed himself with minimal effort and he can call on whoever is home in our townhouse complex if he gets into strife over anything. Residents here have been marvellous with moral and practical support, even a roster for a much-appreciated weekly meal.
He has regained a little of his lost weight and is now over 60 kgs.
Lisa has had problems over the past couple of weeks. First was a leaking shower tap which required a plumber to come and fix. Then her security door, which a neighbour had shoved in in an ice-fuelled rage, was replaced but the lock developed a glitsch and Lisa locked herself into her flat without, as usual, any food. Finally, today there was a disturbing incident involving the same neighbour: someone got knifed, there was a lot of blood, swearing and shouting, and it ended with the police taking him away after a lengthy interview. He is a Housing Trust tenant and their Complaints department refused to even hear about it because Lisa did not get knifed, the person who was knifed had to make the complaint - which would be quite difficult if he were dead! (This attitude is the same as that of the police which told me that every individual car owner in the street had to put in a complaint after the same guy had bashed in the doors of four or five cars parked in the street.)
Life is full of medical appointments but thank goodness we are able to access them easily, it would be very hard for folk living in non-metropolitan areas. For the next six months I am taking part in a UC Science research project on lungs and propensity to infection, and will also help out Physio students for a supervised learning activity (only one day, thank goodness), while the annual Lung Education Day is soon. We do manage to get to concerts and movies but meals out and anything more strenuous have been put in the 'pending' basket.
Next oncology appointment will be at Canberra Hospital on 11 April so will update blog after that.
Cheers, Maureen
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