Forum Discussion
Time for a new treatment
Hi everyone
Some of you know I was expecting results yesterday. Unfortunately they were not good. I guess we knew it would eventually happen but you always have that little glimmer of maybe it's all gone. I feel no different. So I have progression in my lungs. More spots and existing spots bigger. They don't tell me how many there are because they are 'numerous' - now a few are over the 1cm mark. No cough, shortness of breath or pain - completely asymptomatic. Skin met fine, lymph node the same. Bummer!
Of course I have had a big cry. I am grateful for 7 months of the disease doing nothing - greedily I wanted more. remember that image of my son's wedding - somehow it seems a long, long way away and out of touch right now.
But I am dusting myself off and picking myself up of the floor and moving onto the next treatment - Tykerb and xeloda. I will also have a biopsy of my lungs next week to see if we can get some more information on these lung tumors.
I have too much to live for. I need to be here to guide my children through their childhood. They shouldn't have to see their mother go through cancer.
Perhaps I am going to be controversial but I have to say a few things.
- money needs to be spent on research into metastatic disease and finding a cure - now!
I have more to say on this but my son has woken up and come into bed with me for a cuddle and that's more important right now.
Much love and light - never give in - choose life!
Amanda xx
59 Replies
Just refreshing muself about the original post and the subsequent responses on this question. Have just received my Beacon and Inside Story at home and of course the Beacon is upfront and large and the Inside Story is small and something I get the feeling others really don't want to see.
I was actually somewhat angry that the covering note is asking for donations with all the pink bells and whistles attached whilst we get very little attention paid to those of use with advanced breast cancer.
Understand that this can all be very scary and that for those diagosed with early beast cancer I suppose it is even more scary and could be disheartening. Unfortunately it is a fact of life and there is a large percentage with ABC who were once EBC - it has come back. Therefore EBC people should be aware that a CURE is really the answer so that it does not come back to bit you.
The original idea of lobbying politicians was a good one but I know from experience from other issues how much energy this can take and if you are like me that energy is better spent on our families and ourselves. However the letters should continue to go in. You must remember that politicians change on a somewhat regular basis and the minister ond day is not the minister necessarily the next. Unfortunately a lot of the information and cuases etc do not get passed on properly or fully as staff also change.
Thanks all for listening as needed an outlet to let off steam.
Love to you all
Jaci
Hi Amy I agree so much with what you are saying. I want to live my life but the problem is that after two years diagnosed everything has settled down and people forget about the diagnosis. I am ok with that as long as I still get support. I don't get any support now. I also found the stigma attached to the advanced stage so debilitating. I found women with earlier diagnosis being attended to so well in outpatients by the breast care nurse when I was told so little could be done for me since "the horse had bolted from the stable" that is what the breast care nurse told me. later I felt invisible in the waiting room as I waited to see the oncologist and surgeon as I witnessed the breast care nurse be so attentive to a woman who was receiving chemo. I feel the diagnosis is somewhat a death sentence and yet I am living quite well at the moment, or maybe I hide it well. I am the same as you it is in my bones and I live in fear re progression feeling it is only a matter of time. And yet I am still going ok at this stage. Why is there such apathy regarding those with advanced breast cancer. I couldnt believe chemo would not be an option for me because the cancer had already spread. I would have thought it would still be good to try to kill the cells circulating in my body. Such a strange situation to be in and I feel for you as much as I feel for myself.
Melissa
sorry for spelling/gramma mistakes I am busy with my little-one
sorry for spelling/gramma mistakes I am busy with my little-one
Well done!! I am still here, I only get into Internet every 3 weeks or so, but please COUNT ON ME!!............we need all would need at some point to write a letter and sign it...the more signatures the better!!....And the Minister of Health MUST HEAR US!!!!!!!!!!!!!
LOVE AND PEACE TO ALL OF YOU MY DEAR FRIENDS!!
Good on yu Amy. So proud of women like you. I have secondaries (all be it only in the lymp nodes) so I should be jumping up and down too - just like you!!!! Congratulations XLeonie
Isnt it a great feeling when actually feel some one is listening. we will keep pushing.
Maybe a letter to the Minister for Health?
