Brain Tumour Survivor

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PostPosted: Thu Dec 09, 2010 7:35 am 
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Location: Brisbane
Thanks for the hospice advice and kind support.

I have looked into this already and in home care does not really suit Heathers situation. She just sleeps now and is woken for meals and meds and in total she is only up and awake for about four hours a day. In home care is limited to a few hours a day and at this stage Heather cant be left alone as when she wakes she is not really aware of where she is or what days it till she has been awake and aware. Day respite care, from what I have found, is for reasonably active people, not someone who needs to sleep all day.

Her 9th Avastin treatment was last Monday and our consult with the oncologist showed slight increase in the size of her tumours. He has now put Heather back on chemo, Temodal, for 15 days. This will take her up to her 10th Avastin treatment and he will discuss further treatment then.

Her long term memory is still intact but day to day she is jumbled and disorientated. She is not ill and has no headaches or side effects, just exhausted and fatigued.

So far the kids and I have shuffled jobs and rosters so that Heather has someone at home at all times, albeit just to be there if she wakes and the make sure she is fed, hydrated and takes her meds.

The oncologist says it is just part of this disease and that all we can do is keep treating the symptoms.

The short term memory loss is hard, but we are coping.

Thanks Again


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PostPosted: Mon Dec 20, 2010 7:01 pm 
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Hope things are better in time for Xmas. Hopefully the memory problems will be temporary. I wonder whether, with the oncologists input, there are any natural supplements that may help.

We'll be thinking of Heather over the holiday period.


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PostPosted: Tue Dec 21, 2010 7:50 am 
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Thanks

Heather's 10th Avastin treatment was yesterday and the usual consult after. The dex was increased to treat the disorientation and the Temodal finishes today. Dex is now 8mg twice a day. Heather is comfortable and still sleeping 22 hours per day. The oncologist scheduled more Avastin and a few blood tests next week, nothing new.
Her next treatment is New Years Day......what a way to start the new year. Well at least she will start the new year!
Luckily our children are on uni break and holidays coming up soon so the roster for keeping an eye on Heather will become easier for a few weeks.
Thank you again, to all of you, for your words of support. Where ever you are, whom ever you are with, cherish Christmas for the right reasons. Being with the ones you love, keep them close and safe, and I pray the new year brings good health to you all. We, as carers and sufferers of this terrible disease know the meaning of true love, devotion and strength.


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PostPosted: Thu Dec 30, 2010 11:26 am 
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Appreciate the New Year's wishes.

My daughter was born 10 days after I got out of hospital and she will be 4 years old in May.

Lots to look forward to. I hope Heather shows signs of improvement and that all of the family can take a load off. Sometimes there is just the simple pleasure of being.


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PostPosted: Thu Dec 30, 2010 3:19 pm 
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All the best Michael


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PostPosted: Wed Jan 05, 2011 1:51 am 
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All the best Micheal.

I looked after Raymond at home for as long as I could... physically, it was very demanding, he weighed 130 kgs at one time there.

We were referred to the local palliative care hospital several months before he passed, but he refused to discuss palliative care. However, he was finally able to accept the situation close to his passing in September.

When he finally was admitted to palliative care, he told me he wished he would have been admitted sooner. We had a great relationship with the hospital, Raymond was able to come and go from the ward as he (and I and the doctors) pleased. It meant I got some much needed rest, and I also knew that I had professionals keeping an eye on us (looking back, the stress of the situation sometimes meant I didn't realise Raymond was as sick as he was, or maybe I didn't want to believe it).

I would be talking to the hospital and seeing if there are any arrangements that may suit the family. There are also organisations (we have a buddhist one) that provide in home respite care.

Raymond finished his radiation treatment in August 2008, but he was sleeping 20 hours a day up until about October/November 2008. His dex remained high (around 20 mgs a day). We were slowly able to decrease the dex as his energy levels increased. Just sharing in the hope that sometimes, post radiation damage to the brain can cause many of the side effects that are also resemble tumour progression effects.

Thinking of you,

Amanda


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PostPosted: Fri Jan 07, 2011 10:48 am 
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Thank you all for your kind words once again. Sadly Heather was admitted to hospital on boxing day and moved to palliative care the following day. The Avastin was not working and chemo had yet again failed. The advice from all our specialists was to stop the treatments as Heather was not responding to anything.
They told me that Heathers new tumors were inoperable and her body was beginning to shut down. Her meds are being tapered and sadly Heather will pass in her sleep in the next week or so.

She is comfortable and in no pain and still waking for about 15 minutes at meal time then falling back to sleep. I am spending every minute of every day with her grasping to the little bit that is left of her. I am heartbroken but at the same time know that Heather fought a great fight and would now want some peace. She has no short term memory now so she is not aware of what is happening, she just wants to go home.

I think Heather left this world alive and is stuck between here and heaven.

Michael


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PostPosted: Sat Jan 08, 2011 8:23 am 
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Sorry to hear that we have reached this stage. I am glad to hear that she is not suffering. No words from me can attempt console, but once again we are reminded how this disease affects too many.

No time is a good time to face the end. I had a remarkable experience when I was at school that I'd like to share. We visited an aged care facility and it was a shock. Not that the residents were old and frail, but how scared of death they were. Perhaps our culture prepares us less well than others.

Whatever the outcome, please keep in touch. I'm sure that I'll be afraid initially when my time comes, but I hope that won't be the last thing I feel. It sounds as though Heather is at peace, which is a good thing and I'm pleased about.


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PostPosted: Wed Jan 12, 2011 11:46 am 
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With the saddest of hearts I tell of my darling Heather's passing Monday 11/1/11 at 9.10 am. I was with Heather till the last breath and I will miss her always. Thank you all for your words of support and I wish you all strength on your journeys. Stay strong, be with the ones you love and be there for them always.


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PostPosted: Wed Jan 12, 2011 2:17 pm 
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I'm sure she felt your love and support at the end.

We give each other strength. We can all learn by your example, your strength. It is easier when things are going well, more difficult when they are not.

Heather will remain with us - those who have been touched by her story.


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PostPosted: Thu Jan 13, 2011 10:31 pm 
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Michael, I am so sorry to hear of Heather's passing. No words will ever do the unbearable pain you are feeling justice. I know as difficult as it was, it gave me peace to know that I was with Raymond until the end as well. I was not able to post much about it, it was all a bit raw at the time.

Thinking of you and your family during this darkest time. It's not a road easily travelled, and those of us that have lost our soulmates will tell you that life never seems the same again. No flowers have any smell left, no colours in the sky, no food tastes good. But I've found, slowly things are coming back. Sometimes I see a small amount of sun shining through the clouds and I can smile. Sometimes a flower makes me happy. There are happy moments again. Never the same as before, but you will smile again.

Amanda


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PostPosted: Tue Feb 08, 2011 9:28 am 
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Thank you all for your kind words. This was read by my brother at Heather's service -

I have only slipped away into the next room.
I am I, and you are you.
Whatever we were to each other, that we still are.
Call me by my old familiar name,
Speak to me in the easy way which you always used.
Put no difference in your tone,
Wear no forced air of solemnity or sorrow.
Laugh as we always laughed at the little jokes we enjoyed together.
Play, smile, think of me and if you want to, pray for me.
Let my name be ever the household word that it always was,
Let it be spoken without effect,
Without the trace of a shadow on it.
Life means all that it ever meant.
It is the same as it ever was;
There is unbroken continuity.
Why should I be out of mind because I am out of sight?
I am waiting for you,
For an interval,
Somewhere very near,
Just around the corner.
All is well.




by Henry Scott-Holland.


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