journey

A place for Partners going through the worst to support each other.
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schoolteacher
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Re: journey

Postby schoolteacher » Tue Apr 24, 2012 7:42 pm

Feeling for you and your children Andy. RIP Diana...What a cruel and frustrating experience with the medical system. At such a time when you need the utmost support :hugs: :hugs:

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Gail
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Re: journey

Postby Gail » Mon Apr 16, 2012 1:26 pm

Very sad to hear of your loss, it is just so difficult with children and their needs for mum and normality. I am so sorry to hear of what you went through here, it just should not happen. :hugs: Rest in Peace Diana :heart: Love to all of you.
"You Gotta Laugh!"

Gail


Diagnosed April 2006,Lumpectomy,17 of 25 nodes positive, chemo, radiation. Finished treatment March 07
Diagnosed July 2012 cancer of mediastinal(nodes around lungs and heart)pelvis and spine. Up for the fight!

angel33
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Re: journey

Postby angel33 » Mon Apr 16, 2012 8:24 am

I'm so sorry to hear about Diana.

Beliefs are what help us understand and help us keep living. Without them we would all be lost. I am sure you have not offended anyone.

Thinking of you and your family :grouphug:

Rest in peace Diana. :rose:
EBC 1997, bony mets Dec 2000, liver mets april 2007, chemo since

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kiwijan
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Re: journey

Postby kiwijan » Mon Apr 16, 2012 8:17 am

I also am sorry for your loss and wish you comfort for the future :hugs:
Stage 1; Grade 11; bc. ER/PR positive; lumpectomy and rads. Finished 5yrs of tamoxifen on 1/11/10

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Re: journey

Postby Tracey Gibney » Mon Apr 16, 2012 2:48 am

I am so sorry for your loss I wish you and your family peace. Tracey
EBC 94 aged 34. Mastectomy CMF, tamoxifen. Mets 07 brachial plexus, supra clavicular node, sternum. Treated with AI's Rads x3 Ooph 09. 2014 met to chest wall,surg, rads. 12/14 Multiple bone mets, rt axillary nodes further recurrence chest wall. Failed on Faslodex. 8/15 Ibrance

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Re: journey

Postby warpgirl » Mon Apr 16, 2012 1:33 am

Andyana, so very sorry to hear about your loss and Diana's passing. I hope you and your children find some peace and comfort in each other following such a difficult time, RIP Diana.

Regards
Helen

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Janette
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Re: journey

Postby Janette » Mon Apr 16, 2012 12:04 am

Andyana,
I'm so terribly sorry to hear about your losing Diana. I'm glad you are comforted by your belief, I hardly think anyone should be offended. It is difficult to make some sort of sense out losing wonderful ladies this way.

I appreciate that you let us know. I hope the future holds much better, for you and your family.

Rest in peace Diana. :rose:
Janette


andyana
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journey

Postby andyana » Sun Apr 15, 2012 10:54 pm

Well thats the thing about HER2+ IDC, the treatment with herceptin works for a while but this subgroup is at very high risk of brain mets (40-50%). Diana was OK until mid February and then she started having some angry outbursts at the kids, morning headaches and dropping things. I asked the treating specialist to get a brain CT (I didnt bother with asking for a MRI, things are done very differently here in Qld from all those US hospitals). A few weeks later Diana had one and then an appointment was scheduled a few weeks later (I kid you not) for her to see the dr. As her condition was worsening daily I wanted to get her some WBR (whole brain irradiation). Her condition was so bad I took her to the ED, to try to see the specialist, waited for hours then got her into a clinic. The specialist read the scan (I already knew what it said) and got her a bed at another hospital in the area. After another long ED wait at that hospital having to justify the need for admission she finally got in but was sent home the next day because there was nothing they could do, they were going to try getting radiotherapy but the soonest available one was at least 6 weeks away in Brisbane.
This raises an interesting point: If in the public system they dont do any brain scans despite the high risk of secondaries, until there are symptoms, then at that point where brain mets are diagnosed we know that median survival is 4-8 weeks without WBR treatment. WBR stretches survival out a few months. Yet this treatment is simply not available in the timeframe for it to make any difference. I feel that the quality of oncology services here in Qld is like the 3rd world, yes I know that in advanced cancer "it wont make any difference so it doesnt matter" but the management is very reactive, not proactive.
We arranged to get the WBR at a local private oncology service. I found out later that the CT they did for planning showed that she had over 90% of the brain affected by metastasis and that the radiation oncologist thought treatment was futile. I wasnt told. A week later Diana woke late with severe headache and vomiting. She was in a terrible state and I called the ambulance. She was taken to hospital and admitted, first to a medical ward then the palliative ward. The palliative specialist thought that it was still worthwhile for her to have the WBR, but because of hospital rules she would have had to be discharged if she was sent by ambulance to a private facility, so a workaround was for me to actually drive her myself. She had one treatment only and was too sick the next day. The following night she had a massive decline and her level of consciousness was very impaired and she was only capable of a few words, she held her arms in the decerebrate posture. The treatment of the palliative care unit I felt was very good and up to speed. She gradually declined bit by bit over the next week. When some relatives were visiting she told she could see her father who was dead 20 years and that she wanted to go. 2 nights before she stopped breathing I and my daughter both had dreams where we saw her and spoke. She had gone on her journey , leaving the body behind.
Well as a "widower" I feel a bit strange. I can get unlimited sympathy from people but I dont like wearing my heart on my sleeve. Life goes on, it has to especially when there are kids involved. I know if I meet someone then there will be a lot of issues.
I have been reading a bit of the molecular basis of cancer and the old 'rogue cell' idea is a bit dated. This disease is genetically programmed, it has to happen. The mechanisms of generation and spread of cancer run as deep as say the development of organs of the body in utero and the successful treatment will require much greater knowledge. We treat cancer as a bad thing that causes pain disability and early death but sometimes I wonder if it is really a programmed self-destruction of the physical body needed for the person to pass on to the next state of being. Sorry if this offends anyone, I find it comforting.


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