the plan to get over the hurdle
Hi wonderful ladies
Firstly let me thank you all so much for your messages of support. I haven't been able to reply individually but know they are gold to me.
Devastated, shell shocked, angry, frightened, sad, desperate, hopeful, empty, bereft... there are so many words to describe the gamut of emotions I have been through since Friday's test results.
I still cannot believe that I have developed metastases while on the gold standard treatment for my form of cancer. I'm not sure my treatment team does either (they they obviously do and are not emotionally attached). I haven't even noticed the effect of the taxotere this cycle because the pain in my heart is so much more than any pain in my bones or tingling in my fingers. The sick feeling in my stomach is fear not nausea, the shaking has been from my uncontrollable sobbing - when I finally let it out - it was a physical release - who says emotion is all in the head?
After a very, very hard weekend Monday saw us visit the Gawler Foundation shop which is near our home. I saw a counsellor there and found it immensely helpful - she let me cry and scream and showed me that releasing my emotion actually provided me with some peace and space to be hopeful, that holding the fear and sadness down was actually more harmful to me. I have felt better since then - I am able to brush my daughters' hair without tears slipping down my face, watch my son kick his foot ball without wondering if I will ever see him play an actual game, listen to my other daughter sing without it tearing me apart. I'm not saying I don't feel anything anymore, I'm just managing it better. I have tears now as I write this - I'm bloody frightened.
So, the plan...
Today we saw my oncologist who has spent the weekend and yesterday discussing my case with colleagues and she has recommended that a clinical trial is my best chance to try and suppress the cancer - it will give me access to cutting edge drugs and is, she and her colleagues think my best chance. There are a number of trials with pros and cons - we have decided on a trial at Monash that ensures that even in the control group I am getting a combination of drugs that she feels will still be worth trying - if I get the experimental drug even better (perhaps). I have to go through a whole battery of tests and depending on my bloods will start as soon as possible.
The treatment will involve weekly chemotherapy - indefinitely... It is herceptin and navelbine (IV form) + the experimental drug/placebo (daily tabet)
We cannot cure the cancer - it will always be there. We have to hope that we can suppress it and hopefully shrink the tumors and that I can live with the disease and it's treatment as a chronic disease state.
It is a lot to come to terms with but I have a lot to live for.
Amanda xx
Comments
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Hi Amanda
I am glad that you now have a plan - it's always a good place to start.
Releasing emotion is a hard thing to do but I always do feel better after a big sobbing session. The trouble is it's hard to find time to do that when you have small children! You don't want to cry in front of them and freak them out and then you don't always want to be a sobbing mess for your husband - difficult. My breast care nurse recommended the shower as a good place and I have done that a few times...
I hope that the trial works out for you and that you can manage to stabilise everything. Like you said, you have a lot worth fighting for. And remember you have all of us in your corner.
Amy x
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Amanda,you must have been in severe shock all weekend.With that 'sick to the pit of your stomach'feeling and uncontrollable shaking,you need to release all that emotion.It's good you could do the simple things for your kids without crying.I had a good cry after I had read your bad news.I feel like I've come to know you and we are all friends here on this bcna cyber life raft. You have been so brave and strong for one so young.You have given your time,your caring and your knowledge so generously to support others on this site. Inturn,we are here for you.I worry about what your poor body has had to endure so far.To have to put it through more of the same takes great mental strength. You are an inspiration to all of us here who could wake up tomorrow and find ourselves in the same situation.It's good your doctor's have quickly worked out a plan for you.It sounds hopeful and you have a fighting spirit. They are discovering new drugs all the time so anything's possible.I've read Ian Gawler and Patrea King's books and I am amazed at what the human spirit can overcome. Amanda,you are in my thoughts and prayers.
luv Tonya xx
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Hi Amanda I have been thinking about you everyday & still shedding tears. I'm so glad that you now have a treatment plan & sounds like you are in good hands with your medical team. I think you are a strong women to continue on with chemo but as you say you have your family to live for. Wishing you all the best & I will also be praying for you.
Loretta xxx
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Hi Amanda
Thanks for taking to time to fill us all in with where you are at! - you are so in my thoughts nad prayers.
I am with Tonya -You are an incredibly strong woman and you have a beautiful family to fight for.
I have benefitted from your support and encouragement on this network and know you will have the strength to move forward.
I really do wish you all the best as you step into this new treatment and great to hear you have someone to talk to face to face where you can let it all go.
We are with you and for you Amanda.
In my continuing prayers and thoughts.
Debsx
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Amanda I've only just caught up with your blog & news. I'm thinking of you & hoping you can find what you need to manage this. It's not often I feel I have nothing useful to say ... lots love to you & your family xxxx
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Hi Amanda, I haven't been online lately and i have only just read your latest blogs. There are no words that I can use that will change what you are going through and as a Mother I can only begin to imagine your thoughts and fears, but like everyone else has already said, you have a plan now and that is a good starting place. You are a strong and beautiful young woman and you have so much to live for. I hope and pray that the drugs and chemo will help you and that whilst you cannot eradicate the cancer you can control it and live a long and happy life. I was feeling sorry for myself as I have been battling with my chemo and some other matters but they pale into insignificance when I read about this new journey you are now embarking on.
Just know that I am thinking of you
Love Jenny xxx
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Hi Amanda, I haven't been online lately and i have only just read your latest blogs. There are no words that I can use that will change what you are going through and as a Mother I can only begin to imagine your thoughts and fears, but like everyone else has already said, you have a plan now and that is a good starting place. You are a strong and beautiful young woman and you have so much to live for. I hope and pray that the drugs and chemo will help you and that whilst you cannot eradicate the cancer you can control it and live a long and happy life. I was feeling sorry for myself as I have been battling with my chemo and some other matters but they pale into insignificance when I read about this new journey you are now embarking on.
Just know that I am thinking of you
Love Jenny xxx
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Oh Amanda , I feel for you, life is so unfair. You are strong and you will get through this. You have been an inspiration to me with your positive attitude. All the best for your treatment ahead of you. In my thoughts and prayers.We are all hear for you. Sending big hugs Debbie
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Hi Amanda
I can only begin to understand the incredibly tough weekend you must have had and yet you have the strength to continue let us know how you are doing. That just adds to the inspirational effect you have and continue to have - your wise comments, advice and thoughts.
I am so pleased that you have a plan as I sense that for you that starts the feeling of working with a purpose and the steps towards the next goal. I do hope that this plan does allow you and your family to live with and manage this disease in a way that you can enjoy a wonderfully long life with those special children.
You exemplify a very special quotation " Courage doesn't always roar. Sometimes courage is the little voice at the end of the day saying, 'I will try again tomorrow'".
Thank you for all you have done for me and I believe many other women on this bcna site and we in turn are now here to support you in whatever way possible.
Amanda I will hold you in my thoughts and prayers constantly, Dette xxx
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Sorry that you received the news we are all so afraid of, my heart and prayers are with you.
When you are ready have a look at these additional therapies, they are spirit based and can be used along with any western medical treatments you may be having.
Visualisation to help your body heal itself
http://www.healingcancernaturally.com/cancer-healing-visualizations.html
and finding someone who can help heal with REIKI [its given freely]
http://www.reikiaustralia.com.au/AboutReiki
B xxx
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Hi Amanda,
What a horrible week you have had. Thanks for sharing with us your plan. I hope you get to move quickly into the clinical trial. You are a remarkable young woman and we are all here giving you lots of support, and saying many prayers.
Chris xx
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Hi Amanda, I have only just seen your latest blog now. I am sorry to hear that your news has not been good.
As you said it was good to get your emotions out. I often write mine down and keep them on a usb. It seems to work pretty well for me.
Just want to wish you all the best with the trial.
Take care.
Tracey xx
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Hi Amanda, I have only just seen your latest blog now. I am sorry to hear that your news has not been good.
As you said it was good to get your emotions out. I often write mine down and keep them on a usb. It seems to work pretty well for me.
Just want to wish you all the best with the trial.
Take care.
Tracey xx
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hi amanda, thankyou for sharing your recent darkest moments and devastating news.
the thought of cancer returning, is at the back of my mind, and i am not sure how i would react if i was told it had returned.
i guess i may try and take things as they come, or i would be overwhelmed. i would also hope i had support from family, friends and medical staff if/ when i needed it.
there are new treatments being trialled, and people can live many years with advanced BC.
i hope you are one of them.
you have given me inspiration and i hope you find strength to deal with it all; also your family.
do you get the " inside story " from bcna and the beacon magazine?
sincerely, kathy.
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hi again, just wishing to say hello, and i am thinking of you and all you have to take in, and deal with right now. kathy.
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