Forum Discussion
It's been a while
Hi all - It has been a while - about 4 weeks since I found out that the early breast cancer had spread to my lungs, skin and another node and what a ride! I wish I had enjoyed rollercoasters as a kid - I may have been better prepared for this.
I've had 3 treatments so far - my cocktail is Navlebine (vinerelbine) and Herceptin +2 tablets daily which are either Everolimus or placebo. For what it is worth I think I am getting placebo. At least I am getting the Navelbine - did you know that the Government won't subsidise the use of navelbine and herceptin together for breast cancer? What a croc! It is a fairly standard first treatment for secondary cancer in the the US! Only taxotere and Herceptin are approved to be used together and taxotere didn't work for me!
I am tolerating the weekly treatment well. The side effects are minimal - a bit of indigestion/nausea the evening of the treatment but nothing I need to take meds for. I guess I am a little tired but not needing to sleep extra either. I have just been out walking the dogs and taking my 4 year old son for a ride on his bike and feel fine. Last weekend my Husband took me to Sydney and we climbed the Harbour Bridge! To be honest - if not for the scans I would have no idea that there was cancer inside my body. On the upside the skin lesion appears to be shrinking and reducing in it's redness so i am hopeful that it is melting the tumours in my lungs and node away. I have a followup scan on the 15th of August. Had a scare with the bone scan showing "warm spots" but as my PET was clear they believe it is chemo induced inflammation showing on the bone scan - phew! Would like to keep the number of fronts that this disease is showing to as few as possible for now.
Day to day life has been a little difficult. I am running the gammut of finding people to help me through this - they have told me it is incurable, it is a chronic disease that we will aim to control. I still have hope that control for me can be "no evidence of disease" for a long time. I am seeing a wonderful counselor at the Gawler Foundation, have seen a psychiatrist which I also found helpful and then a couple of psychologists (yeah - overkill but I didn't know who would work for me) - the first psychologist was a disaster so I am glad I now have a couple of "professionals" in the field to help. I have changed my diet to a primarily vegan one - I am not finding it difficult. I am having Fish a couple of times a week, I'm juicing 7 times a day. I know it is not proven but I feel there is some evidence of it working for some people so it may help me. I am learning to meditate and dedicating a number of hours to that a day. I am also trying to find a complementary health practitioner that is willing to work with my medical team to support it - so far I haven't had success. I spoke with an Intergrated medicine dr yesterday and he suggested I hide any treatments he would give me from my oncologist - this is just not my modis operandi so the search continues.
I have signed up to learn Qi Gong and am spending quality time with my kids and family and reevaluating my purpose in this life. It sounds like I have been busy - it's not as crazy as it sounds - I just feel a need to address the body, mind, movement, energy and nutrition in managing this disease. In the process I have met some amazing people and some with amazing stories - I refuse to give up hope that I can be one of those stories too. I know that this will take time - it's not a "happen overnight" scenario and there are likely to be more hurdles but I aim to have my mind and body in the place to deal with them best.
I have had some pretty "blue" days still -perhaps even "black" but I am a pretty determined chickie. Chemo day is hard - the ward is depressing and my younger daughter has really been struggling with anxiety and fear - lots of tears and tummy aches - it breaks my heart to be putting my family through this and it makes me more determined to get through to another side of this. It's been done before and I live with the hope that I can do it too.
A big thank you to those of you who have me in their thoughts and prayers and are sending me positive energy. I genuinely feel it and plan to "give back" even more.
30 Replies
Hi Amanda,
Qi Gong is fantastic and you can do it anywhere and even a few minutes helps. I do Qi Gong, Tai Chi and Karate and all of them have helped me to remain focussed and have taught me to recognise my low times and pick myself up before they get bad. I usually see my oncologist on the same day I have karate, so when I have had bad news, it has been a great outlet, for me, (not the other person that I am sparring).
It is great to find a balance that suits you in the way that you like to treat your cancer. My oncologist is open to any discussion and we have had chats about the worthwhile stuff and the not so good stuff.
There is a lot to think about and do, but we just have to find our way of working through it all.
Take care and all the best.
Tracey
Love your work!!!!!!!XLeonie
Thanks for the support everyone. I have been a little hesitant getting on here - stupidly probably - but to me what I have been through is a realisation of all of our fears and I didn't want to bring anyone down.
I have found sifting through the information tough - I think before the change in my diagnosis I was pretty passive - accepting the odds as being pretty good and putting my life in my dr's hands - but even when they try their best it sometimes isn't enough. Now I realise that I must be the driver of this bus and go with what feels right to me based on the information I've been exposed to.
I am loving the meditation - I am still learning but it takes some discipline and the support of the family to give me time and space to do it. My body needs to heal and my mind needs to be in the right space to allow that to happen. I have been overwhelmed with lots of worry and negative thoughts and the meditation brings my body and mind into a much calmer space.
With the juices I am spending up a fortune on organic vegetables. I mainly juice veges in a variety of mixes - carrot, carrot and celery, carrot, celery and beetroot and I have a delicious green juice daily - with barley grass, celery, capsicum, parsley, spinach - whatever greens I have around. I feel I get an energy boost from them and find them quite tasty too.
I have given more thought to the complementary side of things and think I am going to go with Chinese Medicine. I have been given quite a bit of hope of managing this disease by my oncologist and I feel comfortable with working with someone who will help balance my body so my immune system can kick in and start healing once the cancer cells are dead.
It's a big job and taking up much of my time but I am focused on getting well and healing.
I have to be honest and tell you that I don't feel strong or courageous - I have been very anxious and worried but can only see a way forward that is focused on being here for my little family.
Love you guys - thank you!
Amanda xx
p.s. The bridge climb is awesome and a great goal - I have always been very frightened of heights and flying but after doing a visualisation with a counsellor before I went, I can honestly say I felt none of the things I normally do when I am flying or up high (very close to panic attacks) - I just enjoyed every moment! Steal the idea as much as you like - definitely worth it!
Thanks for the support everyone. I have been a little hesitant getting on here - stupidly probably - but to me what I have been through is a realisation of all of our fears and I didn't want to bring anyone down.
I have found sifting through the information tough - I think before the change in my diagnosis I was pretty passive - accepting the odds as being pretty good and putting my life in my dr's hands - but even when they try their best it sometimes isn't enough. Now I realise that I must be the driver of this bus and go with what feels right to me based on the information I've been exposed to.
I am loving the meditation - I am still learning but it takes some discipline and the support of the family to give me time and space to do it. My body needs to heal and my mind needs to be in the right space to allow that to happen. I have been overwhelmed with lots of worry and negative thoughts and the meditation brings my body and mind into a much calmer space.
With the juices I am spending up a fortune on organic vegetables. I mainly juice veges in a variety of mixes - carrot, carrot and celery, carrot, celery and beetroot and I have a delicious green juice daily - with barley grass, celery, capsicum, parsley, spinach - whatever greens I have around. I feel I get an energy boost from them and find them quite tasty too.
I have given more thought to the complementary side of things and think I am going to go with Chinese Medicine. I have been given quite a bit of hope of managing this disease by my oncologist and I feel comfortable with working with someone who will help balance my body so my immune system can kick in and start healing once the cancer cells are dead.
It's a big job and taking up much of my time but I am focused on getting well and healing.
I have to be honest and tell you that I don't feel strong or courageous - I have been very anxious and worried but can only see a way forward that is focused on being here for my little family.
Love you guys - thank you!
Amanda xx
p.s. The bridge climb is awesome and a great goal - I have always been very frightened of heights and flying but after doing a visualisation with a counsellor before I went, I can honestly say I felt none of the things I normally do when I am flying or up high (very close to panic attacks) - I just enjoyed every moment! Steal the idea as much as you like - definitely worth it!
Thanks for the support everyone. I have been a little hesitant getting on here - stupidly probably - but to me what I have been through is a realisation of all of our fears and I didn't want to bring anyone down.
I have found sifting through the information tough - I think before the change in my diagnosis I was pretty passive - accepting the odds as being pretty good and putting my life in my dr's hands - but even when they try their best it sometimes isn't enough. Now I realise that I must be the driver of this bus and go with what feels right to me based on the information I've been exposed to.
I am loving the meditation - I am still learning but it takes some discipline and the support of the family to give me time and space to do it. My body needs to heal and my mind needs to be in the right space to allow that to happen. I have been overwhelmed with lots of worry and negative thoughts and the meditation brings my body and mind into a much calmer space.
With the juices I am spending up a fortune on organic vegetables. I mainly juice veges in a variety of mixes - carrot, carrot and celery, carrot, celery and beetroot and I have a delicious green juice daily - with barley grass, celery, capsicum, parsley, spinach - whatever greens I have around. I feel I get an energy boost from them and find them quite tasty too.
I have given more thought to the complementary side of things and think I am going to go with Chinese Medicine. I have been given quite a bit of hope of managing this disease by my oncologist and I feel comfortable with working with someone who will help balance my body so my immune system can kick in and start healing once the cancer cells are dead.
It's a big job and taking up much of my time but I am focused on getting well and healing.
I have to be honest and tell you that I don't feel strong or courageous - I have been very anxious and worried but can only see a way forward that is focused on being here for my little family.
Love you guys - thank you!
Amanda xx
p.s. The bridge climb is awesome and a great goal - I have always been very frightened of heights and flying but after doing a visualisation with a counsellor before I went, I can honestly say I felt none of the things I normally do when I am flying or up high (very close to panic attacks) - I just enjoyed every moment! Steal the idea as much as you like - definitely worth it!
Hi Amanda,
You have been in my thoughts daily. You are such a strong person , you can get on top of this. Sending my guardian angel to watch over you. Big hugs Debbie. xxxxxxxxxxxxxx
What juices are you having ?, really interested in anything that helps.
Hi Amanda
Like everyone else, I have been thinking of you every day and wondering how you have been getting on. Thanks for the update.
I have been trying meditation too (although not as disciplined as you to do it a few hours a day!). Also started up again with yoga. I'm seeing a naturopath too - just to try and get my body in best shape it can be for the ride.
Haven't tried the juices yet but I might look into it as I'm sure they must be good for you (it can't do any harm anyway).
Good luck with the new treatment regime.
I have everything I can have crossed for you!
Amy x
Hi Amanda, just wanted to let you know that you are always in my thoughts & have also been praying for you. I love your attitude & positive outlook on all of this, you are a truely inspirational women. isn't the bridge climb a great experience, i did it for my 40th birthday. . .love your profile pic too. I will keep sending those positive vibes your way.
Loretta xxx
Wow what a lot you have to deal with.you are an inspiration to us all. my prayers and thoughts are with you and your family.you are a tough chickie as you say.we all are to deal with this in our lives. sending lots of hugsxxx
Wow what a lot you have to deal with.you are an inspiration to us all. my prayers and thoughts are with you and your family.you are a tough chickie as you say.we all are to deal with this in our lives. sending lots of hugsxxx
