Tuesday, October 31 2017
Russ The Ostomistic Husband and I just got home from a last minute trip away to Newcastle (2 hrs north of Sydney), which is approx 6 hours south from here if you get a good run of traffic, which thankfully it was a good trip. But.... although it has been refreshing for my soul and spirits, I am absolutley buggered and finding even 2 hours in the car to be taxing on my body (let alone 6 hours).
Regardless of how much pain I am in right now, it was still worth the quality time spent with Russ yesterday.
Russ needed to go down for training for work, as he had to be there at 9am this morning I suggested we head down and stay the night to avoid him leaving at 3am and driving all day then working and driving all afternoon home... being a P plater I have total faith in his driving but I just thought it is a long way to go on his own, so I tagged along too.
It was Russ' days off work on Sunday and Monday anyway, so we thought we might as well head down Sunday to get the driving done with so we could spend together all day yesterday, which was exactly what we both needed.
There were things in Newcastle that we wanted to do and were on our bucket list (we do hope to come down next year to do part #2), while we didn't get to experiencing everything we still had fun - he always knows how to make me laugh.
Russ thanked me for yesterday (while we were at the hotel last night and again today on the journey home): he said it was nice to just have a day where we could just spend time together without the unfriendly reminders of our reality or our lives back home, that for one day, we were just a normal married couple madly in love and hanging out.
There is a hotel I have stayed in before that is called The Lucky Hotel, it is this boutique hotel on top of a pub, but it is sooo luxe. Think marble tiles in the bathroom, stone vanity, nice roomy shower... and each room has a different quote about luck. They've won all of these awards and despite us being only on the floor above the pub we couldn't hear anything - there was even a wedding on too!
Did I mention it is totes affordable? It was $159 and $179 for our stay, compared to another hotel we were looking at which was around $300 a night by the time you added in brekky and valet parking. We essentially could spend 2 nights at the hotel instead of the 1 we had budgeted for at the fancier hotel.
It was the only reason we could afford 2 nights away last minute.
So we left the hotel and headed to brunch, there is this Star Wars themed restaurant 'The Empire Coffee Co' which we had wanted to go to for a while now, Russ looked like a kid in a candy store! He was taking selfies with the lifesized statues and was putting nerdy snapchats up about star wars and coffee. I knew he would love the cafe. The food was delicious too!
We had planned after brunch to go for a nice long stroll up the wharf and around the harbour, even going to explore the headland too. But walking from the car to the cafe wasn't very pleasant, it was 35'C and very windy with a dry hot heat.
So we decided to postpone the walk until part 2 of our Newcastle bucketlisting trip next year once the weather cooled down and instead headed to Kotara shopping centre to enjoy the aircon.
We have both been wanting to see Thor: Ragnarok and found they had a Gold Class deal for extra $5 above a normal ticket we could sit in the comfy recliners and enjoy the movie reclined. This was the second time I experienced Gold Class, the first was earlier this year in March when we saw Beauty and the Beast. I do like putting my feet up, they were incredibly sore and puffy by that point and the heat wasn't helping, so it helped a lot to have some relief.
We don't have a Gold Class cinema close by, or one that I can go and enjoy in my wheelchair, so the movies is something I can only do when we go to the bigger cities and it feels like a reward somehow for good behaviour, so we don't get much of a chance to go to the movies together (on a date) so we love when we can. I do wish it were closer, I am excited for all the movies coming out I would like to see them as they are in the cinemas not when they're available on DVD. But, at least it is a lovely luxury to enjoy when we go away.
The movie was really good, there is a lot of humour in it which is unexpexted for an action movie, I quite liked it. Who am I kidding, how could you not enjoy Thor without a shirt on amiright?
I stopped at the Christmas trees that were all lit up and looked beautiful. I love Christmas and I love going places and admiring their trees, if I could manage to put the tree up on my own I would. I just feel so happy this time of year, it feels a little bit of magic is in the air.
Next on our agenda was the most excitement I had felt in a long time!
... I got to hold a $183k pink Argyll Diamond in one hand and a $93k pink Argyll diamond in the other! My heart was racing and Russ said I had the biggest grin on my face!
I have had it on my bucket-list to see an Argyll pink diamond, thinking in order to see this rare and exquisite gem I would need to head over to WA to the Kimberley region and knowing that travel that far is highly unlikely (when I struggle making it 6-8 hours) that I wouldn't get to see one.
So... imagine my delight when I see this sign saying "exclusively for today only we have the Argyll Pink diamonds in store".
I squealed with delight and Russ wheeled me in to the store.
I was even more excited when I got to try on and hold the jewellery! .... and then holding the precious diamonds was unreal and I am even smiling right now just something I had always wanted to see for myself. I wasn't prepared for it to be in Newcastle.
When I heard in 2011 that the WA mine was shutting in 2020 and that there wouldn't be anymore of these precious diamonds I always said if I won lotto I would buy myself something as an investment as the price will increase after 2020... the WA mine produces 90% of the worlds total Pink Diamonds!
I am still working on my million dollar idea, but the sparkle on the ring was stunning. The ring I admired was worth around $43k, the earrings were $60k, then there were the gems on their own.
It was just a good day yesterday, just Russ and I spending quality time together and yesterday I felt my spirits were more energised (even though my body is tired) it was nice feeling excited again. I do find when I can find the chance to live and enjoy life, I feel happiness and have adrenalin... living life is my own version of thrill seeking in a weird but magical way.
Friday, October 27 2017
In July 2015, my husband and I met with a local bank, well a credit union, because we were told that they put their members first above their profits and were meant to be a great bank to deal with. We told the bank's home loan manager that we wanted to buy a house asap as I was going to start chemo in September and we really wanted to get settled in our own home sooner than later (knowing during chemo wouldn't be the ideal time to move house). We told him that I was terminal and we just want to start the next part of our lives. We wanted to make a home our own. We said how we wanted a level home as I am in pain and struggle walking stairs or distances. It was this employee that ran the sums and said we could build as it were cheaper to buy a house, so we did!
Now, over 2 years later our bank is using the fact that I have cancer and take pain medication against me, all because we asked for a better rate.
We are currently on a 4.85% interest rate. We keep applying for a cheaper/better rate and they keep declining us... using my cancer as a reason.
This isn't the first issue with the bank this year.
They changed their BSB number and who hosts their cards, as a result EVERY member got new cards which now won't work as visa debits online for purchases which is infuriating. The old cards worked fine. Then the new BSB also meant that no major banks were recognising this new BSB and for months we couldn't direct transfer money from our ANZ account to the credit union which our only option of paying our mortgage was by direct depositing into the offset account and we got charged fees each time.
THEN....☟ ☟ ☟ ☟
We approached the bank to ask for the 3.5% fixed rate they had advertised (was a limited offer). We wanted to fix the loan for financial security and knowing what the loan payments were so we could better set out weekly/monthly budgets; we also wanted to fix the loan due to the uncertainty in the market predicted over the next couple of years, rates were expected to rise, and we wanted the best rate possible.
THEN...☟ ☟ ☟ ☟
The bank said as a counter offer that they would allow us to switch to their OMG home loan (a limited time offer) of 3.8%, so saving 1% in interest to what we are currently paying. Told it was a straight process since we had signed the documents for the fixing and that it would be done without any issues. That was on the 6th of October
THEN... ☟ ☟ ☟ ☟
On the 23rd of October, I got an email saying "there is no definite answer if this variation change will be approved," the email continued "they have expressed concerns regarding your health, you mentioned do to me that you regularly take pain medication to help with your current circumstances, they are worried that you are not capable to sign legal documents yourself and have requested that you have a legal representative or Power of attorney sign on your behalf."
I replied that my husband is my power of attorney and that despite taking pain medication it does not interfere with my cognitive ability or influence my thoughts. I said I run this blog that is well read, I write for other sites/publications too, and that I also launched a magazine that I write/design/edit 100% myself and that I take pride in my work.
I said my Doctor would happily write a letter of support to state that my mind is in good health and that there isn't any issues cognitively.
THEN...☟ ☟ ☟ ☟
The response was " I am sorry that bcu has questioned your cognitive ability, we did not want to come across like that at all, I honestly do feel horrible. [insert institution name] will always have the best interests of our members and that is why we have requested the documentation. You have mentioned previously that you do take pain medication to help, and that you have forgotten if you had made payments to your current loans."
The last comment was taken out of context, when trying to consolidate our debts there was one credit card that had a late fee for the month and when this employee asked why I explained "I have been unwell and had a lot going on healthwise I simply forgot if I had paid it on time and realised the following day but it was a day late and got a fee which is all there".
I forgot one payment (on a card that isn't through their bank), now they are using this against me saying I am forgetful because of having cancer and taking pain meds and that I am unable to do my own banking.
I was told that my banking would need to be done with someone present overseeing things, that I would lose my online banking privileges and my card access too, because you know, apparantly I am not thinking clearly because I am asking for a cheaper rate and I clearly don't understand what I am wanting to do.
THEN... I received this email today☟ ☟ ☟ ☟
To go ahead with offering the lower interest rate "we would require that the variation be signed in front of a solicitor (at your expense), as you have mentioned that you don't believe your cognitive ability has been affected by your medication you are taking we need this to be signed in front of a solicitor to ensure that you are fully aware of what you are signing and they will be required to sign the document stating that you are aware of what you are signing."
To make it more patronising the email said "again we apologise if we made you feel like we are judging your circumstances".
Uhhhhh, how are you not judging me?
You are telling me that I am unable to think clearly for myself and that my cognitive ability is impaired, you are telling me I am not of sound mind enough to be ALLOWED to do my own banking, you are telling me that you believe that I don't understand what I am signing up for simply because I am requesting the lower interest rate to save myself money.
Next, are you going to tell me that the entire basis of your argument that I'm not of sound mind is: because I am Aboriginal? Or is it because I am a woman? Because, that is as ridiculous as you saying that I can't be able to think for myself because I have cancer. It is being prejudicial, patronising and discriminating.
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I feel so trapped, I absolutley loathe this bank, I wish I could afford to take my loan elsewhere.
If I win lotto tomorrow it would be 21 million reasons to not bank with them!
But it is complete and utter BS that they claim to be putting the best interests of members at heart, because all they have done these past months is cause me nothing but undue stress.
I take pride in every single thing that I do in my life, and a large part of that is because of my brain. I have felt my self worth and self esteem feel threatened with each email I receive telling me that I am no longer able to think for myself, it truly hurts me.
I can tell you that my husband is not thrilled about their treatment of me either, and if it weren't for having the home loan with them and being trapped, I would be changing banks ASAP. I will let you know the outcome.
I had given the bank until today 5pm to get their shit together, instead of working with me within reason they continued to patronise me and undermine me. I will be going to the financial ombudsman on Monday and seeing what they have to say.
Wednesday, October 04 2017
“Be the change you wish to see in the world”
We all know that at some point our lives will end, but what we do in our life and how we live could be a legacy that we are leaving that would continue to live on well after we have died.
It is hard at times knowing that my end is coming, given my terminal prognosis and that I am living with the knowledge that I could have 6-12months. I do know that a year ago I didn't think I would still be here, but I am. So I am making the most of every single day.
However, leaving a legacy is at the forefront of my mind.
Everyday I wonder: "will I be forgotten?"
I have so many thoughts racing through my mind every minute of the day, these are just some.
One thing that I worry though is if my life meant anything or if I mattered... it might sound like a strange thing to think about or it might sound like a self-centred narcissistic thing, but it is hard somedays wondering "why me?".
So leaving a legacy and living a life that I am truly proud of is something of importance to me
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One thing that I have known and believed since I was a teenager was that I had a purpose in life and that was: "to make a difference or to change one person's life", so I have tried to live life with this desire to help behind every action - including my blog and magazine.
I was pretty excited to have been asked by Share the Dignity to write about legacies and living a life with a purpose. This is a piece I offered up as a volunteer contribution (I was not paid or incentivised in any way), this is a charity I have been passionate about supporting for the last couple of years and one that I know how important/needed their work is.
If you would like to read my article click here. (Feel free to leave a comment if it has helped you or if you liked it)
Share the Dignity have their annual It's in the bag campaign coming up where people are asked to donate a handbag or backpack that is in good condition and fill it with items such as pads, tampons, toiletries and more. To learn more click here...
Being a Volunteer, despite being terminally ill:
Last year I did two backpacks for teenage girls and filled with items I had collected since the Xmas prior. To find out about how I put together 2 bags on a budget, click here.
I decided to sign up as a volunteer and collect the bags and deliver to the respective charities in the area. At one point I had over 300 handbags in my house. Two guest bedrooms were chock-a-block full of handbags and backpacks and there were a trail from the front door leading through the house!
It was an incredible experience and very overwhelming, only that I struggled with energy and pain and couldn't carry much so Russ stepped up for me and helped to deliver everything. Russ also helped me to check each bag for all the essentials and make sure that each bag had pads etc.
I was pretty proud of the work from our community.
Russ and I were delivering bags to a youth refuge and the owner/manager was in tears. One of the girls came out and helped Russ and I carry the bags and she said: " Thank you for doing this, you have no idea how much it means to me to know that strangers do care, that someone believes in me".
Another charity we were delivering to (was our 2nd delivery there that day as the car only fits so many bags) came running out of the charity as she had just received her bag and she hugged me and was crying and said "this were the best gift she had ever received".
I am so happy that an incredible organisation that is Share the Dignity exists, I wish I could have done more to help but I donate pads when I can to their April and August drives and the #itsinthebag. I love that Russ got involved and was a champ in helping me last year, sadly I am not in good enough health to volunteer for a second year but I am trying my best to get a bag together when I can.
I know there were times in my life where pads were a luxury and it meant going without food, it is no exaggeration at all, I am not ashamed of that point in my life I was simply trying my best, but do consider in your next grocery shop to grab a packet of pads/tampons and keep aside for the #itsinthebag campaign, even if you can't afford to do a bag but can donate pads that would be incredibly appreciated and it does make a difference.
If you were interested in volunteering for the it's in the bag campaigns click here, it truly was a hard yet rewarding experience. Or if you can't collect the bags consider offering your workplace as a collection point!
There are always opportunities all around us to help make a difference to someone else's life.
I know that even if you think it is a small act of kindness and that it wouldn't be noticed, it could in fact be a huge thing to that person and be the reason that hope is restored.
Wednesday, October 04 2017
In Early December 2015, I was 2 months into my chemo plan of weekly treatments and was rather unwell with the chemo side of things and was in hospital rather ill with an infected and dying tumour that saw me in hospital for the weeks and months to come.
It was around this time that I learned of the Share the Dignity #itsinthebag campaign, I think I saw it on TV or on Facebook, I tried to organise what I could for a bag. I didn't have much time or energy, so I did the best I could and sent Russ to the shops with a shopping list of things to get for the bag.
I wished I had of known earlier about the campaign and I would have been super organised, so I vowed the next year to start early and shop throughout the year when things were on sale and hoped to try and do at least 2 bags by being organised and nabbing great deals.
So the new year came and true to my word, I started getting organised.
To give and receive a #itsinthebag gift is something that can help improve the lives of a woman who is doing it tough. I have heard stories of how they got a handbag and it helped them to look and feel more confident/professional when going for jobs, I heard from teenagers who escaped a violent home situation and are in the foster care system and a new backpack is a luxury and having someone believe in helping them through school made them feel loved and worthy.... each of the women who receive a bag from you have their own incredible stories, and sometimes they need to be reminded of how incredible they are.
Some tips before you start your bag:
Here is how I managed to organise a bag on a budget!
Best of all I were able to organise not just 1 but 2 bags filled with items following these methods.
#1. Write it all down:
I know it might sound over the top to do things this way, but this is how I have organised present buying for years and it also means I am accountable for my purchases.
You would be surprised how many times I have purchased something more than once because I forgot about it.... even though it has been a year since my chemo finished I still have a rather frazzled brain, so lists and spreadsheets helps me to feel in control of my memory.
#2. Go through your own cupboards:
I found some hair dye boxes left over from when I dyed Russ' hair, some perfume sets I never used, some makeup that were unopened, spare toothbrushes and I also divided the contents of the container of cosmetics I received from BellaBox into two piles.
Having a chunk of things already meant I could save costs and could instead buy something else.
#3. Sales, Sales, Sales:
I start my Xmas shopping usually just after Xmas and take advantage of Boxing Day/Stocktake sales. I did this too when it came to my #itsinthebag planning and by having the best part of a year to shop and know what I was looking for, it helped me to nab some great buys at times.
I also take advantage of Click Frenzy deals, if you haven't heard of click frenzy it is this one day where sites offer crazy sales that are known for crashing the internet, it really is a clicking frenzy. I regularly scope out sites/stores like catch.com.au (formerly catch of the day), ozsale, kmart, reject shops as well as google.
I purchased a Roxy wallet that normally cost $20 for $5, so I grabbed 2. I found the eye masks (Kmart now have a range for $2) at Typo (with the help of a 50% off coupon) for $1.50, the beanie was from cotton on for 50c, as well as the notebooks. The backpacks were half price too. I got quality pretty design umbrellas on sale from Umbrellas & Parosols for around $6.95 on clearance too one was a leopard print.
Catch.com.au have 'club catch' where you receive shipping discounts as well as member only offers, sometimes there is ridiculously cheap priced offers but I find grocery store items like toiletries are really cheap to buy from here and are often a bulk buy too.
#4. Bulk buys and value for your dollar:
Say a pack of Pads were 1/2 price, it means if you purchased 2 packs that it would have cost the same as 1 pack would have, therefore doubling your price. Currently on Catch, they have a 6 pack of mesh bath sponges for $4.98 so 83c each.
Just keep an eye out in catologues or online for good special buys, there really is great value to be found if you shop around and compare.
#5. Afterpay makes bigger cost items more affordable:
I chose to organise my gifts for teenage girls, girls who are doing it tough. I knew a backpack would be great for school use as well as if they worked.
I took advantage of click frenzy sales half price or even less and grabbed 2 backpacks and put them on afterpay, which meant that I could break the repayments up over 8 weeks, which made it a little more affordable as well as not missing out on the sale.
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I really hope that these tips help you when it comes to organising your bag for the #itsinthebag campaign, just over a month before the collection period starts. Don't stress too much about how much or how little you put in, it isn't a competition and as long as you include the essentials such as Pads/Tampons, toiletries and the bag - then you are on your way to giving a woman the greatest gift this Xmas.
Last year my husband and I collected bags in our area and delivered to local charities who distributed them. This was such a rewarding experience and at one point there were over 300 bags sitting in my house!! The emotions felt when seeing each bag that had so lovingly been put together was truly incredible. I wrote about this experience here.
Everyone deserves some magic and kindness at Xmas.
Do you have friends who are doing a bag this year too? Why not arrange a date where they bring their bags and contents and you all sit around together and complete the bags. You could have wine and nibbles too, I am sure it would be a lovely and rewarding experience when shared with your best mates too!
Or if you can't put together a whole bag yourself, ask a friend if they wanted to do a bag with you and you could share the costs of creating it. She might even have a bag for you to use too! It is a perfect experience to share.