I'm now a year older!

Hi Amanda

I find that I quite often fall asleep when meditating too!  When I did the course the instructor (not sure if that's what you'd call him but can't think of another word!) told me not to worry about it - at least it showed I was relaxed!

I haven't got any help with the house or anything which means the house is a right state at the moment as I just don't have any energy to do more than the basics - look after the kids, cook the meals and do washing.  My husband is great though - as I type away he is working away at the ironing which has been spilling out of the basket and over the floor!

I'm in  ACT, Canberra.

Hope you had a nice day outside today.

Amy x

hi amanda, thanks for your reply. i enjoy your posts.

you have certainly researched and i wish you hope, light and for you to reach that mountain top. TC,

 OOXX kathy.

Yes research & trials are so important & it's a shame more treatments are not on the PBS. I know of two people who went to America for treatments for cancer because there was nothing available to them here. I haven't really done anything to celebrate yet but am planning to soon.

I am enjoying the view up here & you will too when you get here.

Loretta xxx

Hi Amy -

I hope your daughters's birthday party went well - Butterfly cupcakes - yum!

I hope that you find the hormone treatment is working - it would be nice to avoid the chemo if you can.  Do you get a bit of help with looking after the house and the kids when you are tired?  I don't think I could have coped without some of the help I have now.  

I don't get much time to meditate on the weekends - last night I feel sound asleep - not quite the stillness I was after!  I am looking forward to a nice quiet time tomorrow - hopefully the weather will be nice - I thought it would be nice to be outside among nature for a bit and the kids have school. 

What state are you in?  thanks for keeping me in your thoughts - you are in mine too. 

Amanda xx

Wow Loretta - you are there at that mountain top - I'll bo so grateful to see you at the top.  I can't see it yet as I have no end date for my chemo.  It is going to be weekly, ongoing...  I will only come off it if the disease progresses (and then onto another cocktail) or if I take myself off the trial.  My oncologist says that there are a couple of women on the trial who are showing no signs of disease who are discussing coming off the trial - then most continue with herceptin forever too.  I have been doing lots of research into treatments and trials in the US and am glad to see so much happening in research for women with Stage 4 disease.  There are many of these trials happening here but the treatments available off trial are relatively minimal - meaning the ones the government covers on the PBS - if you are willing and able to pay you can increase your treatment options.  Anyway - I'll pop off my soapbox for now and dream of meeting you at the top of the mountain - enjoy the view - when I get there we are going to have a lot of catching up to do - thank you for you belief in me.  

Have you celebrated your reaching the peak in any way?

Hope you are enjoying the view.

Amanda xx

Hi Amanda

I can so relate to how difficult it is with children.  My daughter has just turned 4 (having her party tomorrow and I have just finished decorating a load of cupcakes with butterflies on them) and my son is 2.  They know that I go to the hospital for treatment ; that I sometimes get very tired and need to rest; and that my right breast is 'ouchie' (I had a mastectomy on 21 Dec last year); and that sometimes my medicine makes me feel yuck (particularly radiotherapy which I've had 3 lots of and which just does not agree with me - nausea, fatigue etc).

I haven't had to go the chemotherapy road yet.  I'm trying a second lot of hormone treatment and will know in a couple of months whether this one is working or not.  If not, it will then be chemotherapy.  I'm trying to stay positive and hopeful that the hormone treatment will stabilise my secondaries, even just for a year or two.  Trying to put off chemo for as long as I can!

I've also done a course in mindfulness meditation.  I try to practice every day but it is difficult with 2 small children.  I do find that it does help me though.  Even when I feel panicky sometimes I use the techniques, breathing, visualisation etc to help calm myself.  I'm contemplating acupuncture to try and help with my hot flushes which keep me awake at night.

Anyway, I've raved on enough!!

Take care and know that we are all thinking of you.

Amy x

Hi Amanda, It was so good to hear from you again, you are always in my thoughts. So sorry to hear the treatment has been harsh on you but a big YAY for how the tumors have shrunk that is wonderful news. I have now reached that mountain top we talked about( finished rads on Thurs) and will now sit and wait for you. take your time my friend, I know you can do it. Take care. Oh & I almost forgot sending you happy belated birthday wishes.

Loretta xxx

Thanks everyone!  

It's funny - I was reflecting on how much I disliked the term "journey" in relation to cancer but I have been unable to come up with anything else that is really suitable. It just all sounded a little twee to me.  But.... that's what it is.  I also dislike the idea of "fighting" the cancer - I'm a non confrontational person - I don't like the idea of fighting my body, just like I don't call it my cancer.  I have cancer in my body - it has come from within my body. I am choosing to think of it as the medicine is there to kill the nasty cells and my mind and body are there to get everything into shape to ensure my body becomes and stays hostile to the cancer wanting to reemerge.  I know many will feel this naive but I believe it - it's been done before and can be done again. I am not turning my back on what is very good medicine but ensuring that I too contribute to it's success.  There is so much research going on in Her2+ve cancer I have to believe that we can benefit from that too. 

Love and light to you all!

Amanda xx

Amanda xx

Hi Kathy

I run everything past my oncologist.  She is OK with the Chinese medicine - I do accupuncture weekly and take herbs - i have them all listed but there are none that they really know anything about with respect to contraindications so they don't say no.  They are a little more stringent with things like antioxidants - vitamin c mega doses, echinacea, Co Q10 etc... - there is a list we were given of things to avoid.  There is actually quite a bit of positive research with accupuncture so they are quite OK with that.  I also get them to do more detailed bloods every now and again to check things like my calcium, vitamin D and iron levels.  My onc is aware of my diet and OK with it so long as I am still enjoying food and not losing too much weight (I am struggling a little to maintain weight  - for the first time in my life!) So I am keeping a close eye on this and very focused on ensuring I get enough protein each day.

Meditation is wonderful but challenging.  Like all life changes it is taking practice and committment.  I have done an introductory course into mindfullness meditation and am open to trying other techniques and groups.  Finding some stillness in the day and among all of the busyness both in life and in my head is amazingly beneficial though I do find it difficult with little children to find a significant amount of time to devote to this so I am trying to have few expectations and just commit to a daily practice and go from there.

It is very difficult with the children.  Since my secondary diagnosis we have possibly been a little less open about the extent of things.  We have tried to keep it simple and based around the practicalities of what it means for them - i.e. mummy having treatment weekly, needing extra help in the house, grandparents staying to help etc...  My son who is 4 thought he had caused the cancer too as the day I had my mammogram he and I fell down the stairs!  My 6 year old daughter has found it very difficult and has been very teary, clingy at school and having lots of psychosomatic pains - in her tummy, head etc  - she was never like this before.  My eldest daughter who is nearly 10 has been very stoic - she doesn't talk about it much and hides her emotions from me quite a bit - we were very focused on my finishing treament so to have to have more hit her hard and she got very angry about the disease and wishing it would all just go away and things be the way they were.  We just continue to say that we and the doctors are doing the very best that they can to keep mummy well and that means having the medicine every week, that we don't know how long that will be for and that the medicine can only be given at the hospital as they don't have a tablet.  And that unfortunately sometimes the medicine makes me feel tired and a bit sick in the tummy and makes it harder to fight germs sometimes which is why I ended up in hospital.  It's hard but we try to be open with them and honest and direct in answering their questions.

I wish you the very best. 

Amanda xx

Hi Amanda

Great to hear from you.  Sorry you have had such a hard time.  Hopefully the tumours will keep shrinking and it will all be worth it.  Definitely all for 'living in the moment'.  I didn't do anything for my 40th birthday and was then diagnosed just before I turned 41.  I now intend to celebrate each and every birthday - hopefully, a lot of them!

I'll keep sending my positive thoughts to you.

Happy belated birthday.

Amy x