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  1. #16
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    Jan 2005
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    Campbelltown NSW
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    Quote Originally Posted by ian View Post
    more importantly ...

    given the current coronaviris pandemic will your son's treatment be classified as "essential" or "should wait till 2 to 3 months till we're not as busy" ?

    and what would be the implications of putting off treatment?
    Good question and one I’ve been thinking about myself. There is no more surgery for him that I’m aware of and whether the treatment is classified as category one or two I don’t know. Is it life saving or life extending and could be put off. Will they release him from hospital for the bed or because nurses and doctors are reallocated.

    Radiation doctor just came in and assured us that treatment will be going ahead regardless. Whether it as an inpatient or out patient is to be determined. Out patient could present some difficulties for us as with food shortages, adult nappies out of stock and travel requirements if I get sick in the six weeks of daily treatments.

    After a good day yesterday when he was more awake and alert, today was not so good for him with bad headaches and being sick.

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  3. #17
    Join Date
    Jan 2005
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    Campbelltown NSW
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    77
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    Still not so good today although he did eventually eat his lunch.
    The brain specialist nurse came and said the symptoms were due to the reduction in steroid dose from two days before and increased the dose up again to make him more comfortable.


    The lesion is an anaplastic astrocytoma grade 3, high grade glioma on the frontal lobes and is generally found in the 30 to 50 year old age group and is more prevalent in males. Areas affected are intelligence, reasoning, memory, planning, decision making, judgment and initiative. Advice is that he will no longer be able to live independently.


    We have a meeting with the Radiation and Chemo specialists tomorrow about where to next.

  4. #18
    Join Date
    Feb 2003
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    back in Alberta for a while
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    apple8, that's terrible news.
    I want to be positive but having been advised that your son is "no longer able to live independently" is the worst. Dr Google suggests that your son is likely to predecease you both.


    If at all possible, have your son made redundant by his employer. The money will come in handy when it comes time for further treatments.




    wish I could be more positive ...
    regards from Alberta, Canada

    ian

  5. #19
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    Feb 2016
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    Canberra
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    Apple8, I know exactly what you are going through.

    My wife has an Oligo Astrocytoma, mixed (Oligo dendroma and Astrocytoma).

    Chemo, radio and endless appointments are part of life.


    Advice? I can't give any but I can relate our experience.... Get him on Disability immediately. Its a poverty solution, but its better than nothing. Work is not an option. Treatment, sickness, brutal headaches, loooonnnnggggg days of waiting, feeling helpless and just "simply helping" are part of it.

    For the best doctors who specialise in this, management of the process (headaches, side effects) is a big part of it - its a LOT of good guesswork and finding what works for him. Everyone is different, there is no concept of one-size-fits-all.... so patience, perseverance and resilience on behalf of the carers is simply part of the process.

    For treatment - listen to the doctor. IGNORE THE INTERNET.

    Ignore the advice of friends. Instantly discount the "have you trieds..." of others.

    There are a million do-gooders out there. They will harm you. There are 5 million shysters, charlatans and hope-spruikers who will tell you "my son/daughter/wife/friend did this and it magically cured her"... with explanations of religion, witchcraft, nonsense hokum and herbalism. 99.998% of this crap flows from the USA. Block it.

    Its all BS. I would have those people found and publicly shot. I'd be happy to swing the sword myself. They offer false hope, are a mirage and ultimately harmful.


    It is a journey that will take time. Try to make him happy, comfortable, find a useful hobby, find a social outlet and keep clean. Try to find a routine.... and be flexible.

  6. #20
    Join Date
    Jan 2005
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    Campbelltown NSW
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    77
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    Met with the heads of radiology and chemotherapy today. They went through what they knew of his cancer and affects, whether treatment would be effective and outcomes. They told us to talk to the family about options and they would give us a recommendation early next week after further tests as to whether treatment would be worthwhile or not. The gist of the conversation seemed to be preparing us for a no treatment recommendation. His condition won’t improve and he will be needing 24/7 care in some type of care facility from now on.


    He was better today than yesterday after the steroid dose increase and was having limited conversations and browsing through his phone. Still sleeping a lot.

  7. #21
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    Dec 2005
    Location
    South Australia
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    4,470

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    That is is real sad news, a mates wife had a very similar thing a few years ago lesion on her brain, had to go into care because he was unable to look after her.

  8. #22
    Join Date
    May 2013
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    Rockhampton QLD
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    Very sad news.

  9. #23
    Join Date
    Jan 2005
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    Campbelltown NSW
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    Over the weekend the sleeping periods got longer and longer until it became very difficult for the nurses to get him to respond and he had the odd twitch. More blood tests and a CT scan not revealing any thing untoward.


    Today as we arrived he was on his way to the intensive care unit, the bouts of shaking had got worse and he was not responding. An EEG, CT scan and blood tests still not showing anything. Steroid dose has been increased to help reduce the swelling caused by the lesion. His temperature is up so a fever may be causing the shaking so antibiotics and Panadol have been added to the drip. When we left for the night there seemed to be a slight improvement. Fingers crossed for tomorrow.

  10. #24
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    Feb 2003
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    back in Alberta for a while
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    Apple8
    I see that you live in Campbelltown.
    Are you prepared to say which Sydney hospital your son is in?



    thoughts and prayers are with you and your SWMBO.
    regards from Alberta, Canada

    ian

  11. #25
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    Jan 2005
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    Campbelltown NSW
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    We got a call from the ICU doctor advising that our son had settled down overnight and would be transferred back to his room. We arrived a bit later today to find him a lot better than we last saw him, still very drowsy but occasionally responding and smiled when I showed him a picture of our dog.

    The doctor that dropped in this afternoon was the palliative medicine doctor who took us to another room where she told us what to expect over the next several weeks. She will see if she can find palliative care closer to our home.

  12. #26
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    Palliative care is very not good.
    I truly hope that all the legal paperwork -- enduring power of attorney, end of life directives, etc -- has been submitted.


    As mentioned above, try and get your son made redundant by his employer.
    regards from Alberta, Canada

    ian

  13. #27
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    Jan 2005
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    Quote Originally Posted by ian View Post
    Palliative care is very not good.
    I truly hope that all the legal paperwork -- enduring power of attorney, end of life directives, etc -- has been submitted.


    As mentioned above, try and get your son made redundant by his employer.
    Yes, paperwork is all in place but POA is frustratingly difficult to invoke with different requirements by the different institutions. In some cases I haven’t got account numbers as a lot of these things are locked inside a phone.

  14. #28
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    Is there any way you can get your son to unlock his phone and give you access to his bank account login details / medicare number / private health insurance number, etc ?

    It will be a right royal pain if this can only be done after he dies.
    regards from Alberta, Canada

    ian

  15. #29
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    Jan 2005
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    Campbelltown NSW
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    Quote Originally Posted by ian View Post
    Is there any way you can get your son to unlock his phone and give you access to his bank account login details / medicare number / private health insurance number, etc ?

    It will be a right royal pain if this can only be done after he dies.
    No, he is not responsive enough to get any information. When he was he gave me a few codes but he was very confused and none of them worked. I’ve stop trying to use what he gave me as too many attempts will wipe the data from the phone. Part of one of the codes was for his linked watch so I can see emails for billing but no access to any apps. I do have medical cards etc from his wallet so that is some help.

  16. #30
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    Jan 2005
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    Not much change over the weekend with a good day yesterday. We went over to his flat on Sunday morning and packed up some personal items and cleared the out of date food from the refrigerator. SWMBO had a fall as we arrived home on Saturday night and has sore ribs. She had an X-ray today with results in a couple of days.
    It’s her 70th birthday today, we sort of had dinner out, in the ward with our son, a ham and cheese croissant for me and a Greek salad for SWMBO from the takeaway cafe below. He is on soft/liquid foods now, tonight minced chicken and vegetables, ice cream and yogurt, his appetite varies though.

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