June 2015
Hey there! It is a hard road to be a carer.... Just be kind to yourself. Nothing will be the same and your reactions may not be what you would 'normally' do as you always have that layer of hurt/ disappointment/ fear/ sadness/ lost dreams that underlies every decision and every experience. Just take time for yourself and do what you can do..... Just take it one day at a time..... Good luck!! PA XXX
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June 2014
Hey there! This is completely normal..... Sending loads of positive energy and hugs to you.... It is so hard watching from the sidelines, wanting to help, and being pushed away and even made a scapegoat for the situation...... Hang in there..... It is so tough! Be kind to yourself and know that you are doing a very important job! PA xxx
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June 2014
Hi smartyalligator!
I hear you.....a new normal can be okay for a while and then something will take you back to the pain and loss...... I don't really think of myself as a widow...I can't define myself in such a sad way. I am still a mum, a daughter, a friend, a teacher.....I was once a wife, but for now am not. I took a radical step a year after my husband died, I moved myself and my two kids to the Northern Territory from Northern NSW. It has been a real eye opener and an experience that has made me realise how lucky I truly am, loss or no loss. It is a 'pattern interrupted' experience. My kids have enjoyed the opportunities that living here have given us, weekends in Kakadu, seeing some of this great country, sunsets that go for miles, crocs everywhere. It has been tough, I am teaching in a remote school and the kids have been challenging at best. We are here for a year long stint and it has gone a long way to helping me heal...and hopefully my kids too. We will never forget their dad, he was an awesome person and my very best friend. But we have made new memories and have looked for him in the majestic night sky with millions of stars that we just don't see in the city. Some days I am still on auto pilot, and some days I let myself go and let my mind wander.....even do the 'what if' , what if cancer had never touched my family? Where would we be now? Would we be having such amazing experiences? It's made me realise that I need to accept what I can not change and have the courage to continue on this journey called life! Hope you are okay! Sending positivity your way!! PA
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January 2014
I hear ya! It is so hard when you are the one who loves them the most and yet you are the one they take it out on.....
Just keep venting here...it is a great place to chat, check in, cry and generally carry on....which in turn makes the outside more bearable.
I lost my husband nearly a year ago and the last 12 months of a five year battle were intense and I wouldn't wish them on my worst enemy.
Just such a sick man, both physically and mentally and with two young children on top of that....it was hard.
Just hang in there...sometimes one hour at a time. And make sure you take time out for you!!
Take care!
PA XXX
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January 2014
G'day Ian!
What a tragedy.... I am so sorry to hear of your story....
Take care of yourself over the coming weeks and months.....your kids need you to be there for them, but they need you to look after yourself too.
Just know that when you despair that there are others feeling exactly the same way, feeling what you are feeling and missing out on future dreams....
You will gradually get used to the new normal....acceptance is another story but you will get used to it.
Good luck and take care!
PA Xxx
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January 2014
Hey Lange!
I hope your furry friend will be okay.....
I just wanted to share that my husband had a really rare cancer....epithelioid Haemangeoendothelioma .....he battles for five years with loads of pain but lost his struggle in February last year. Then in October last year my dog had a lump on his hind leg. The vet removed it and showed me the pathology report. There were words in it like epithelial and haemangeo and thelioma. I said to the vet that my husband had recently died of a similar cancer. To which the vet replied...they have done studies on animals who get the same or similar cancers as their owners.
Now this may seem unremarkable as owners/ animals live in the same area/ drink the same water etc...... But my husbands cancer was so rare and had no known reason 'just dumb bad luck' according to his surgeon....that this is a pretty significant occurrence in my opinion...... Who really knows what connection animals and humans really end up with?
Good luck to you!
PA XXX
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January 2014
Hi Missing Tin!
Sorry to hear of your loss......but your kids will absolutely keep you going.....it will be a year next month (where has that time gone.......) since my husband passed and my kids have been a blessing....hard work at times....but a blessing.....
The few times I've collapsed on my bed in a bawling mess, they have never failed to make me laugh/ snap me out of it/ made me realise how lucky I really am.......
But we very much take it one day at a time!!
Take care out there!!
PA xxx
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November 2013
This is something I have been thinking about since my husband's journey began in October 2008. I remember very early on in the piece the hospital social worker suggested I go to Centrelink to see how they could assist (an oxymoron I am sure) I had only been there once before to add my first born to the child care benefit.....it was very confronting. It was even more confronting to be handed a form and have the doctor tick the box that stated that his patient was expected to die within 24 months.....we didn't understand then that the doctor was actually helping us out....but he had never mentioned this to us in any of our consultations.
Anyway....about 6 months after my husband began to receive $24 a fortnight on the disability support pension, it was rescinded as I went back to work after maternity leave (our son was 7 months old when my husband was diagnosed). That meant we lost the use of the health care card six months later. This was the only thing of value, as his med bill was phenomenal.
Anyway.....I asked at Centrelink if there was a tax break for carers. The woman looked at me as though I had two heads. 'We aren't the ATO' was the response I got. So I called the ATO. I explained that I wasn't looking for the reinstatement of the pension, I was happy and able to earn money but it would be really helpful to receive a tax break, as my husband was unable to work and I had two young children to support. The ATO referred me back to Centrelink to see if I qualified for the pension......which I already knew we didn't.
After several phone calls to my local member, during which I was completely fobbed off by her lackeys who kept repeating that Centrelink had followed the law and I didn't qualify for anything....even though I wanted help to change the law.....and I also felt that I had a constitutional right to see my local member.....anyway.......
As my husband got sicker and sicker....I battled on, occasionally calling my local member, occasionally writing letters to Centrelink and newspapers explaining my situation until I just didn't have the time or the energy anymore.
Then this year whilst doing my tax...there was a new section introduced in 2012. Make a claim for a dependant (invalid or carer). Bingo! I thought my prayers had been answered......
So even though my husband died in February, I still had him for part of the Tax year......except that I didn't qualify as.....wait for it......
He wasn't in receipt of a disability support pension, or invalidity service pension, or in receipt of a carers allowance, or a carers payment, or providing full time care to a relative in receipt of all of the above.
So back to square one.
I had to call the ATO when they sent me a letter with a very fancy flow chart describing how I might qualify for this tax offset.
I called the number and spoke to a very nice girl, explained my situation and calmly explained that as my husband WASNT eligible for any of those pensions, then perhaps I needed the tax offset more than most.
'No' was the response.
I asked who I could write a letter to to see about getting the law changed.....'your local member' was the reply......then I cried.
So....in this long winded story....I am asking if anyone has had any other thoughts about this....who do I write to.....and I guess I am also wondering if the Cancer Council could perhaps advocate on cancer patients behalf...the diagnosis and treatment is stressful enough, without having to worry about money too......
If it means another form that needs to be signed by two doctors, then so be it.....but surely a tax offset is not too much to ask (BTW the amount was going to be $1500.......not much really when one of my husbands meds alone was a $2000 injection once a month......)
Anyway....that's my rant for tonight......stay calm out there!!
PA
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November 2013
Hey there Smartyaligatorpants!
I am sitting in my kitchen willing my daughter to go to sleep so I can go to bed and just collapse in a heap........
Thinking of you and sending positive hugs your way........
Be super kind to yourself!!!! And cry and cry and cry........it will make you feel better and it will pass.........
Take care of yourself!!
PA XXX
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October 2013
Hey Melanie!
Sorry that you have to go down this path.....you do what you have to do hey!?
I was told by the palliative care counsellor at the hospital that young children feel sadness in the moment (I am upset that dad's lump has grown) but then to move on so quickly is absolutely normal......
I have had a couple of my own conversations with my five year old.......
"Has daddy gone to heaven yet?" My reply " no not yet but it will be soon" (2 days before he died) mr 5 " I'll be sad then won't i?" Me: "yes of course" mr 5 " well then I'll save my tears for then, what's for lunch?" Priceless....left me a bawling/ giggling mess........
Write down this stuff....they'll love to hear it later.........
Take care of yourself!!
PA xxx
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