Ups and downs

Question

It's been a while since posting. &nbsp;It's been busy. &nbsp;It's been up and down. &nbsp;
My gorgeous little man turned 6 and started Prep. &nbsp;He is exhausted with trying to sit still and concentrate but he is doing so well. &nbsp;He is so keen to be a big boy and rumble with the big boys at school. &nbsp;
This is his first full week and we've done a deal on an earlier bedtime in return for participating in afterschool sport once a week (preps are exempt). &nbsp;
He is happy - we'll see how this week goes... Overnight he has grown up so much. &nbsp;He didn't want me to sing to him anymore, he didn't want to wear a night nappy (and is suddenly almost dry at night!), he wanted me to drop him at the school gate, he wants to carry his own bag. &nbsp;But he is still my baby and he said I could sing to him at night if I really wanted too (and yes, he still sings along so I guess there is something little still there).
I just love him to bits - his kisses make me melt, there is something so sweet about little boys.
I've started new medication. &nbsp;It's OK. &nbsp;I'm more tired than I would like. &nbsp;There are a few side effects I'm learning to manage. &nbsp;It is what it is - I am very lucky. &nbsp;I am receiving this drug via a compassionate access program from the drug company - I am beyhond grateful. &nbsp;I hope it works. &nbsp;You see - I've never given up hope something will work - I still hold out for the miracle - am I crazy? Probably... &nbsp;
It's been a rough start to the year. &nbsp;2 funerals in quick succession. &nbsp;Another I couldn't get to. Friends making final plans and receiving end of life care, others in and out of hospital. &nbsp;There are days I can't stand it. &nbsp;I want out of the whirlpool. &nbsp;I work on my helath and wellness still. &nbsp;I've just returned from a lovely walk. &nbsp;I am off to accupuncture soon and will have a restful afternoon before getting the kids. &nbsp;I swam the Mt Martha Ocean race on Australia day. &nbsp;I look so healthy! &nbsp;
I went to Tracey's funeral feeling very low. Tracey was wonderful and warm and determined yet this bloody disease took her away. &nbsp;Then after her funeral and hearing her family and being reminded of how she lived her life I thought it a disservice to her memory to brood for too long.
Unfortunately one of the impacts of the drugs on me is it is affecting my moods greatly. &nbsp;Hopefully I have a plan in place to manage this with my next cycle which starts tomorrow. &nbsp;I am feeling so great today it is hard to back up again tomorrow. &nbsp;
So there is just life happening - with the hurdles thrown in. &nbsp;We keep jumping or tripping over them but currently up and running.
A x

leonie_moore · Answer

Hi Amanda, &nbsp;Don't ever give up - I know you won't. &nbsp;When my Nanna had a stroke (I was a young wife and mother) I remember what my father said. &nbsp;It is over 35 years ago but it still sticks in my mind. &nbsp;My dad would go to the hospital every day and feed my Nanna. &nbsp;People asked him why as Nanna was in a bad way. &nbsp; His answer "Where there is life there is always hope" &nbsp;I was getting a bit stuck in the "misery glue" too as a couple of my bc friends are doing it really tough at the moment. &nbsp;I remind myself to "Get back in my own vase" and live my own life. &nbsp;Sure we can care about each other and support each other but at the end of the day we have to care for Number One First and live the best life that we can - In our Own Vase. &nbsp; My little granddaughter in Brisbane has also started Prep. &nbsp;She turned 5 last week so I was there for the celebrations. &nbsp;She is such a tiny little "ballerina" who doesn't have the need to eat very often as she is "too busy" playing. &nbsp;She should be exhausted - don't know where the energy is generated from. &nbsp;Nanna is resting today at home!!!!!! &nbsp;Keep jumping those hurdles! XLeonie

pamelamary · Answer

Hi Amanda,
Losing friends is the worst, I agree, but I also value the privilege of having known them. I feel I learned so much about living and dying from the grace and courage of an ABC friend of mine who died late last year.
I am glad to hear you are still so active, even if you are feeling more tired than you would like. Is it the Pertuzamab that is causing problems? I hope it really works for you and will cross all my digits to help ensure good scan results.
We all hold out for the miracles; life wouldn't be bearable otherwise. And each new day, each good experience, is a small miracle in itself!
Warm wishes..... Pam

tonyam · Answer

Thanks for your update.I don't know how far you swam but Mt Martha ocean race sure sounds like a long way- girl,you are amazing! Keep doing all the"stuff"you are doing cos it must be working.I started the year off with 2 funerals as well.It was very sad about Tracey - difficult to lose a strong lovely woman from this network.You are right about not brooding for too long,we have to live life to the max.I believe in miracles and if anyone can pull one off,I reckon you can Amanda.Good luck for tomorrow.I hope this cycle is kinder to you.&nbsp; Love and hugs,Tonya xx

mich_x · Answer

Hey guys
Well done to your son and well done to yourself.  You are both struggling a battle in your own way and you are both an inspiration to us all.  We thank you............
We love you, Mich xoox

louiseg · Answer

Hi Amanda
Keep fighting!&nbsp; You have so much to fight for.&nbsp; Your little man is growing up so quickly but he will always be your baby and will always love you.&nbsp; My boys are now 15 and nearly 18 and they still give me cuddles and kisses - it makes it all worthwhile :)
Good luck for the next cycle,
Louise x
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