I soooo need to blog!
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So here I am, still waiting for a treatment plan, which I am to receive on 18th October 2011, including my first bout of treatment. I had my first Psychologist visit today which was very worthwhile. Having said that, my anxiety levels are still high...due to the waiting! I had my first ever full body bone (CT) scan on Tuesday and to be honest, I felt quite traumatised at the end of it. I normally dont have any problems with scans or tests, but because of the seriousness of this one, and what is at stake, my anxiety levels got the better of me and I ended up in tears. Turning around to watch my skeleton on the screen, lighting up in certain areas just freaked me out! I was certain I saw cancer due to the lightened areas, but my sister tried to convince me that I was jumping the gun, as we are not trained to interpret the scans!! The radiologist clearly knew what the results were, but said "I'm very sorry, I cant say anything. I cant give you any good or bad news. You will get your results on Tuesday".......ONE WEEK AWAY! Long time to wait to know what's in store! I already know I have lung mets, and I strongly suspect bone mets too due to lower back pain (although I do not know for sure obviously). So if this is the case what will this mean for me? If I have 2 mets is this a terminal diagnosis? or can these two be treated together? I have so many questions but am scared to get the answers...and the waiting is dreadful...I just want to get treatment started so that I can feel active in all this. I feel terrifed of what I may discover on Tuesday.....that the diagnosis is more serious than first thought. To try to feel some control over this siutation I am changing my diet, meditating and taking supplements (in addition to any treatment I will receive). I feel a little better that I am doing something at least. While I want Tuesday to come around quicker, I am scared too....what will happen? will there be any further shocks? how will i cope...will I be able to "dance in the rain?"
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Celeste i am so sorry for you and your pain and anxiety you must be going through.I think the worst part of this journey is waiting.Waiting for treatments, waiting for tests, waiting for results.If only the specialists and doctors knew how hard it is to wait.
I dont have any answers for you and i cant imagine what your head is doing it so hard to know the right thing to do.Wondering where things went wrong was it diet medication stress? All the agonising questions we run through our heads.I dont think ive slept since all this started which is nearly a year ago, and i know this cant be good for me.
I wish you all the best and wish there was a magic wand i could give you to ease your burden.I hope tuesday comes around quickly for you and that the results are not as bad as you thinking.sending you lots of good vibes and prayers of strenght to see you through this.
Annie xx
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Hi Celeste,
Just to let you know, that you are in my thoughts and prayers, and I hope your results are all good and that the waiting won't be too bad. I am in Perth for a few days, and spent 5 hours in the Kings park / botanical garden today. It was truly magical, and one area in particular, called, " the place of reflection", moved me to tears. It is a beautiful garden, for peace, contemplation and healing through nature. I sat a cried and said a prayer for all my bcna friends, and I'm teary again when I read your story. It did my soul good to enjoy the beauty of this park, and to think about all of us with breast cancer and others who are suffering at present.
I will be thinking of you on Tuesday.
Love Chris xx0 -
Hi Celeste,
Just to let you know, that you are in my thoughts and prayers, and I hope your results are all good and that the waiting won't be too bad. I am in Perth for a few days, and spent 5 hours in the Kings park / botanical garden today. It was truly magical, and one area in particular, called, " the place of reflection", moved me to tears. It is a beautiful garden, for peace, contemplation and healing through nature. I sat a cried and said a prayer for all my bcna friends, and I'm teary again when I read your story. It did my soul good to enjoy the beauty of this park, and to think about all of us with breast cancer and others who are suffering at present.
I will be thinking of you on Tuesday.
Love Chris xx0 -
Thank you Annie. Yes the waiting is dreadful isn't it? I am lucky that I have sleeping tablets which have worked wonders so at least I get a good nights sleep. I asked for them when I got the news because I know what I'm like...my anxiety levels just go through the roof in stressful times like this and I cant sleep. I have lots of questions running through my head...where did it all go wrong? Diet? Medication? Stress?...but nobody knows. I also wonder why me? but again there is no answer to that either.
Thank you Annie for your kind words and best wishes. I am hoping and praying that the results on Tuesday will be not as bad as I am expecting.
Take care, Celeste xx
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Thank you Chris. The garden you visited sounds absolutely lovely. Thank you for having me in your thoughts, take care Celeste xx
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Hi Celeste
I am 4 months down the track after bein diagnosed with secondaries on my lungs too. I had many of the responses you are talking about. I worked myself into a frenzy trying to work out what to do as medicine had failed when "they" said it would work. I am only now realising there is no point worrying about what I cannot change, that there is no point blaming myself or anyone or anything else. I still get angry and upset. I still have very low points. I still suffer incredible anxiety at times.
But... I have a plan, it is my plan only. I have hope - that can never be taken away. I have today and I try not to waste it with worry about things I don't know and cannot control (sometimes I do this successfully - othertimes not). I take some control by managing my diet after researching what I think will help my body to heal and cope with the treatments. I take further control by realising my mind is a very powerful tool - that I can manage my anxiety with meditation, that I can be mindful of now and enjoy the moment, that I have a choice to think positively. I know that it is ok to feel sad that to cry and scream is healing but not to dwell in the sadness. I find laughter incredibly healing.
I still have the questions running through my head but less so now. the chatter is not as constant - a couple of mornings this week I actually woke up without my first thought being of breast cancer. Be kind to yourself - it is early days. Be as proactive and assertive as you can be though - ask heaps of questions (write as many down before you see the dr as you can) - you drive the bus here. Anytime you want to get in touch - please do.
Big hugs across cyberland to you.
Amanda xx
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Hi Celeste,
Where do you live? It seems to me that you need a real hug from one of your supportive sisters! I'm in Melbourne.
Regarding your questions regarding the bone scan lighting up, it was explained to me that most of these hot spots were normal bodily functions excreting the drug injected. I couldn't work out why my nether region was glowing in the kidney, bladder areas and the results did not show any involvement in these areas.
Bone mets are treated with a supportive IV, tablet or injection regime. I have a monthly IV of Bondronat, another drug used is Zometa. Bondronat comes in tablet form and there is a recently PBS approved drug that is a monthly injection, can't remember its name at the moment, blame Chemo Brain! Bone health is something you can support through diet, calcium and Vitamin D. I try to get my calcium through foods, but as the Vitamin D is in the fat foods we have eliminated through our diet I take Vitamin D supplements as there is some evidence that high Vitamin D levels (over 100) can help in the healing of bone mets. You also need sunlight to potentiate the Vitamin D in your body so I don't feel guilty when I sit in the early morning or late afternoon sun with my arms exposed doing a crossword or reading. I consider this part of my treatment.
Your lung mets will probably be treated by a drug regime, then scans to confirm if it is working until they find a regime that works for you and reduces or even gets rid of the tumours. There are many different drugs and combinations available, there will be one that works for you!
Living with metastatic breast cancer is not a choice that any of us would have made, I now look on it as my chronic disease. I am still engaged in LIVING although I have to plan it around treatments and those few days when I know I will be feeling a bit off. I've even come to believe that it is a better chronic disese to have than some others eg. congestive heart disease, Parkinsons etc.
Wit love and lots of cyber hugs,
Joy K
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Hi Celeste,
Where do you live? It seems to me that you need a real hug from one of your supportive sisters! I'm in Melbourne.
Regarding your questions regarding the bone scan lighting up, it was explained to me that most of these hot spots were normal bodily functions excreting the drug injected. I couldn't work out why my nether region was glowing in the kidney, bladder areas and the results did not show any involvement in these areas.
Bone mets are treated with a supportive IV, tablet or injection regime. I have a monthly IV of Bondronat, another drug used is Zometa. Bondronat comes in tablet form and there is a recently PBS approved drug that is a monthly injection, can't remember its name at the moment, blame Chemo Brain! Bone health is something you can support through diet, calcium and Vitamin D. I try to get my calcium through foods, but as the Vitamin D is in the fat foods we have eliminated through our diet I take Vitamin D supplements as there is some evidence that high Vitamin D levels (over 100) can help in the healing of bone mets. You also need sunlight to potentiate the Vitamin D in your body so I don't feel guilty when I sit in the early morning or late afternoon sun with my arms exposed doing a crossword or reading. I consider this part of my treatment.
Your lung mets will probably be treated by a drug regime, then scans to confirm if it is working until they find a regime that works for you and reduces or even gets rid of the tumours. There are many different drugs and combinations available, there will be one that works for you!
Living with metastatic breast cancer is not a choice that any of us would have made, I now look on it as my chronic disease. I am still engaged in LIVING although I have to plan it around treatments and those few days when I know I will be feeling a bit off. I've even come to believe that it is a better chronic disese to have than some others eg. congestive heart disease, Parkinsons etc.
Wit love and lots of cyber hugs,
Joy K
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thankyou for your blogs. it is helpful to me and i think to all who read it.
whether you have cancer or not, it is a good way to live your life.
i hope celeste gets some comfort from it, at this time.
i would like to meet up with some of you, in melbourne perhaps.. one day.. maybe in 2012?
when the weather is not too hot or cold.. i can come over for a night, if it can be arranged.
even though i did survive.. ( so far touch wood ).. i do have some legacies from all the treatments.i still have concern the BC may return, but so may other illnesses and even if BC does return i hope i can soldier on, continue to try and live each day; and not to let fear overwhelm me.
BC has helped me be the person i am today, some days i am better at it.. than others.. LOL
kathy. ox
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Hi Celeste,
I read your latest blog with tears in my eyes. I really feel for you now. What a horrible wait you have ahead but all I can say is stay positive and I'm sure things won't be as serious as you think. My thoughts are with you and am wishing for a good outcome. You sound as if you are trying everything you can. Keep doing what you are doing.
Our thoughts are with you and good luck on Tuesday. I'm only half way through my chemo with radio to follow after this. The prospect of tests etc after this also frightens me. The question "what if it returns?" is always in the back of my mind but I just live each day as it comes.
Yes you will be dancing in the rain again and smelling the roses!
Hang in there,
Alison xxxx
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Hi Celeste,
I read your latest blog with tears in my eyes. I really feel for you now. What a horrible wait you have ahead but all I can say is stay positive and I'm sure things won't be as serious as you think. My thoughts are with you and am wishing for a good outcome. You sound as if you are trying everything you can. Keep doing what you are doing.
Our thoughts are with you and good luck on Tuesday. I'm only half way through my chemo with radio to follow after this. The prospect of tests etc after this also frightens me. The question "what if it returns?" is always in the back of my mind but I just live each day as it comes.
Yes you will be dancing in the rain again and smelling the roses!
Hang in there,
Alison xxxx
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Thank you Amanda for such positive and inspiring words. I can see what you are saying...it is all about taking back some control of the situation, and I am desperately trying to do that. I too have modified my diet, am meditating to deal with anxiety and am trying to have a positive mindset. I also read a lot too. I think I will be in a better position psychologically once I have my appointment on Tuesday and have some idea what the treatment plan will be. Having done the chemo, radio, hormone therapy 'program' before, I am aware of some of what lays ahead.
Like you did I am experiencing a number of mixed emotions about this diagnosis, which I'm sure will settle as I work through them all...at the moment I am angry...PISSED OFF actually! (I feel the need to blog again coming on! lol!) Anger is a good emotion though in that it stimulates action (for me anyway). Like you mentioned, I have decided to be more assertive in my treatment this time around, ask more questions and be more proactive and forthright. I didn't question anything last time...I was like a deer in headlights, shocked to my core, just following all that was put to me without question due to fear. This time will be different...it will be a "take no prisoners" approach!
Thank you once again Amanda for your kind words of support and encouragement. It is nice to know that the chatter does quieten down after a while! Thank you also for the offer of getting in touch. I imagine after I get my long awaited treatment plan I may have some questions for you and get in touch then.
Celeste xx
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Hello Joy, what a lovely, positive and informative blog! Thank you so much...I wish I could give you a big hug because yes, I do need one from a 'sister' who undertands this journey!? Sadly I am in South Australia and am yet to meet anyone here in the same boat as me, but I do get lots of cyberhugs which certainly help!
Joy, you have given me some basic information that I've so much needed, without all the doom and gloom I'm expecting, and that is very much appreciated. It sounds like there are treatment options for both lung and bone mets (if infact bone mets are discovered in me) and this offers me hope which is all I have right now. Thank you for saying that there are many different drugs and combinations available,and that there will be one that works for me!
You have also given me hope that life can still be lived...just around appointments and health stuff that's all. Sounds silly but I'd actually lost sight of that.
Thanks once again for your kind words. I look forward to keeping in touch, Celeste xx
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Hello Kathy, yes I have certainly got some comfort from the words of these very wise and compassionate women who have taken the time to share their thoughts, knowledge and experiences with me.
And how wonderful would it be for us all to actually meet up one day! Wow, wouldn't that be just fantastic!...even just for an evening, to go out for dinner and laugh! It seems like a few people are from Melbourne, which is a hop, skip and a jump away from me in SA (or a very cheap JetStar flight away!) so I'd certainly be in it (health and treatment regime permitting of course!).
Yes, I think the fear of BC coming back is always with us. It's like a black cloud that hangs there in the distance, usually many miles away, but at the moment for me it's hanging directly above my head! I know that in time I'll be able to push it a little further away, so I can get on with living...its just the waiting that is in the way at the moment.
Thank Kathy for your response. Maybe we will meet one day!
Take care, Celeste xx
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Thank you Alison, I'm hoping the results on Tuesday wont nearly be as bad as I'm thinking. I feel as though I am doing everything I can at the moment, so now I just have to wait. The waiting is one of the hardest parts..the not knowing and loss of control is dreadful.
Yes I hope to be daincing in the rain again real soon!
Thank you so much for your reply,
take care, Celeste xx
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