A Celebration of Life

A celebration of Frances’ life will be held on Tuesday August 5 at 1pm in Loreto Abbey, 1600 Sturt Street, Ballarat, Victoria.

Frances loved a bit of colour in her life so feel free to brighten up your clothing for the day if you wish.

Instead if a signing book at the service we are planning to create a book to celebrate Frances’ life. If you have a photograph, message, poem or personal memento you would like to contribute to this, please bring it to the service.

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Now at Peace…

Today at around 4pm Frances passed away peacefully with her family and friends by her side.

Although this is a very difficult time we are finding some comfort knowing they controlled Frances’ pain, now she doesn’t have to deal with the horrible side effects of this disease and treatment.

We would like to thank everyone for their support since Frances’ diagnosis in November 2011.

Please raise your glass this evening to Frances!

Peta, Terry, Jaclyn, Matthew, Jason and Hayley. X

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Frances Health Update – July 28

Just a short update to let everyone know that Frances’ health has taken a turn for the worse. The weekend has been pretty rough for Frances and she is now being cared for at St Vincent’s.
Today she will be transferred to Peter Mac but in the meantime they are trying to keep her as comfortable as possible.
For those that have my number I’m happy to receive messages on her behalf and I will read them to her.
Frances is too unwell for visitors at this stage and we will let you know if this changes.
Frances has the whole family here with her for support and love.
Please keep Frances in your thoughts and I will keep you updated when and if I have further information

Jackie

Posted in Health Stuff

Groundhog Day

… And it really is.

Since I’ve started this new chemo I’ve not really been able to plan anything, as I tend to have a busy day (which knock me around a bit) and the a washed-out day recovering from the day before. I’m also pretty wobbly on those days, making it hard for Mum to leave me due to falls risk.  My appetite it pretty bad, and I can’t handle too many rich foods, but I’m not doing too many.

I still can’t real properly, which is my main cause of frustration at the moment. That all sound terribly dreary, but it isn’t I got to enjoy my birthday and a few trip out for lunch and dinner.

I’m having weekly blood tests to monitor this chemo’s progress and side effects, but it would be greatly appreciated if people don’t ask Mum or Dad for that regular updates. We don’t get new information each week in most cases, and the amount of questions they get it quite taxing. While it might seem caring to ask, it tends towards being obtrusive when you’re trying to deal with so much else.

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A little break and a new chemo

The thing that sucks most about cancer treatment is side-effects. For me anyway. Sometimes there’s other things that suck more, but at the moment it’s side-effects. There’s drugs to stop, and minimise some side-effects and lotions, potions and pills to treat others, but sometimes they get to be too much. We (my medical team, my family and me), decided I needed a week off chemo to let me body recover a little bit, and then I’ll be swapping to a new chemo/aromatase inhibitor regimen.

Supposedly this new mix is pretty nasty to deal with at the start but settles down once they get the mix right. It’s great to know there are other options as well.

I’ll be enjoying my week off chemo and hoping my body recovers well before my birthday party!

 

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Posted in Health Stuff, Life's ponderings

The joy of a Jaffle

I’ve just had a jaffle for lunch and it was bloody enjoyable. I’ve ditched the old fancier sandwich press (it bit burned me a couple of times and takes up a lot of room in the cupboard) for a $7 jaffle iron from Big W – yes they only cost $7 – and if little things like that can make me happy it’s a good day!

I has roast roast lamb with chutney in it, in case you were wondering. The challenge is not to burn myself on it and regret the swap, although the fact the jaffle can be filled with semi-liquidy stuff makes it win every time. Until I burn my lip and curse it momentarily.

On another good-note, living in Footscray I have access to a wide variety of foods and amazing restaurants, but we’ve been a bit low on the “traditionals”. Fish and chips, hamburgers, that kind of thing. I don’t need any of those things, but since there’s so many gourmet burger chains and shops popping up everywhere – and I do love a good gourmet burger – and until now we haven’t had any in Foorscray. I haven’t tried the place in this article which has all of the latest and greatest burger bars in Melbourne, but I’m a bit chuffed that a place in Footscray made the list, and the theme and name… well it’s rather fitting, isn’t it? Instead of number on the markers they give you to indicate your table at cafes and bars, you get 8 bit characters, including maybe Pac-Man.

I definitely need to go there when I can walk a bit better, but in the meantime, can one of my local friends or followers please check it out? If it’s good – which I’m sure it is – I might be able to get someone to being me one. I like the look of the Altered Beast or the Double Dragon. Bacon, yum!

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Posted in Life's ponderings

A crafty request

My hands and feet have been severely knocked around by the chemo I’m on. I have a lot of numbness – caused by peripheral neuropathy – in my hands and feet. The feet stuff can be dangerous, as it affects your balance and makes me quite unsteady moving around. It also feels pretty wrong having numb feet all the time. In my hands it means I have very poor grip. I have trouble undoing things and doing things up, and that same annoying numbness. I also drop things a lot. No pain thankfully, but if I don’t stop this chemo at the right time, these side effects could be permanent. At the very least they will not right themselves 100%, and I need my hands and feet working. They’re helpful things, hands and feet!

Back a few months back I started to learn to crochet. I even had a few lessons! I had a pattern and coordinating wool ready to make myself a lovely scarf, but I’m a bit of a perfectionist when it comes to artsy/crartsy stuff, and was practicing the basics before tackling a real garment. So hopeless am I at this knitting and crochet thing that I didn’t even think you just unpick it and start again if you stuff it up. Anyway, I never even got to start my lovely scarf before my fingers stopped working, and now I need someone to make it for me. I have the pattern and wool, I just need an able crochet-er to make it for me. I think it’s pretty simple… if you know what you are doing. I’ll post the pattern and wool to whoever wants to make it for me!

Blue colour wayRetro colourswool colours

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Posted in Crafts, Health Stuff, Life's ponderings

Staying Alive

This isn’t likely to be a post about the Bee Gees, although who knows how it might turn out! I haven’t really got a plan, other than I need to give an update. Also ASOS has been down, tragically, due to a fire in their warehouse. This saddens me on many fronts, not least I has a few items saved in my bag that might now me burned! Internet shopping is a very important part of my life, now, seeing I can’t really get out to the shops anymore. You’ve heard my gripes about Australia Post and they haven’t really resolved themselves. The postie actually yelled at Mum and I last week for being too slow getting downstairs, say “I haven’t got time for this”. Sorry, it’s your job to deliver parcels lady! Deliver them.

Some of you may be aware that I have a birthday coming up very soon. It’s a bit on the morbid side to think and talk about, but it’s accepted that this is more than likely my last birthday. There’s nothing defeatist or god forbid “negative” about it. While doctors these days are reluctant to give prognoses until very close to the end, I’ve got enough bits of paper signed to know that another whole year would be a minor miracle. It’s possibly do-able (I’m not giving up), but I really should be making the most of every minute I have left, and I am trying, but annoying thoughts such as “with all of these people making huge efforts – from interstate and the like – to visit for my birthday, what happens if I do live another year?” Well it’s a stupid thought and can only be a good thing if it does happen. I’ve answered my own question through rambling on a blog. Who needs therapy? Most people I believe…

Onto an update. Unfortunately it seems to be groundhog day. Not entirely, but my weeks seem to roll into one another at the moment with weekly chemo. Small changed in the side effects I am getting – one gets worse and another gets better – are what I’m dealing with at the moment. Some of them have been really debilitating, and that’s upsetting. It’s hard to have your independence so quickly taken away from you. I was also a little bit too optimistic about how quickly some of these side-effects might disappear or resolve themselves. I’ve learned recently that some of them might take months. That’s been hard to process.

There has been some good news along the way, though! Since starting this chemo my cancer (in blood tests) has been stable. Hopefully scans in a little over a weeks will confirm this. The pain is that the side effects of this chemo are not sustainable, so I’ll have to stop it regardless of whether its working or not. At least the cancer has been stopped in the meantime. The other good news is that apart from my staircase, my apartment is all disability proofed! Enough for me anyway. Next step is Mum and Dad’s house, which is mostly done. We’ve have great help from local councils, hospital OTs and others, but if anyone is looking for an amazing charity to support, think of Yooralla. The advice they gave us was amazing. Disability, from vision and hearing problems to quadriplegia, affects or so many people, and Yooralla has help and advice for everyone.

Without being able to read this blog post back, I’m pretty sure it’s disjointed and possibly has no structure. In the hope of adding something interesting, topical and blog-worthy, there’s been a lot of talk over the past week in the mainstream media about medical marijuana. Personally, I’m all for it. Anything that can help ease pain and suffering in anyone suffering chronic illness – especially pain – is a good idea in my books. The naysayers who sprout things like “people will get high and addicted” clearly haven’t looked into how chronic pain is currently managed in anyone suffering chronic pain. Personally, I don’t think I need, and wouldn’t use ye-olde-weed for pain management at the moment purely because I don’t think I need it, but I’d like to have the option to have it if needed.

medical-marijuana

Saying I support medical Cannabis is not contentious, but I get annoyed whenever the journalists interviewing their dying, and or in-pain guests don’t seem to want to believe or acknowledge that the person they are talking to is actually dying. When there’s an answer using the word “terminal”, it’s often followed-up with words to the effect of “there’s always hope”. Yes there is always hope, but why is it shoved back in our faces all the time? I know a positive spin – especially in the media – seems mandatory, but the underlying thread of “all cancer is curable” and “this clinical trial will cure X disease” is being pushed too hard. They seem to be happy to use the work “incurable”, but not what that means in many cases. Why so much beating around the bush? Glossing over cancer’s reality is what makes the charming people I mentioned in this post feel the way they do about cancer. Have we come so far in de-stagmatising diseases such as cancer and epilepsy – another disease that would benefit from cannabis therapy – that we’ve forgotten they kill people?

As with everything, I don’t want to be all doom and gloom and understand that having stage 4 breast cancer at my age is not the norm. It’s real, though, and seven people in Australia die every day from breast cancer, and that’s just breast cancer! Add is all other cancers, it’s clear that cancer’s no easybeat. Why have we swung from talking about it in whispers to thinking it’s curable?

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Posted in Health Stuff, Life's ponderings

The Reverse Rhonda and other tidbits

Superheros

Which should I choose? My head has given itself a “Reverse Rhonda” after my radiotherapy. From under the eyes up there’s what looks like sunburn, but thankfully it’s fading quite quickly due to the power of Aloe Vera, Calendula and other mild but exotic potions. I have freckles all over the top of my head, but hopefully they will fade as well. My face is still not my own doe to the steroids I am on, but that’s the least of my problems.

reverse rhonda

I can write a little better, but reading’s still too hard, especially complex emails, letters and bureaucratic forms. I need people to help with those.

Unfortunately there’s no long-term answers get, and every week is a waiting game. I understand and genuinely appreciate that everyone wants to know, but please respect that I need and want to know more than anyone else (how could I not?), and if I don’t know, I can’t tell you. Please try to be patient, and not jump on my parents or myself the minute you think I might be be out of an appointment. I suppose that means tomorrow… I have a big day of appointments, and it will be hard regardless of good or bad results.

Mobility-wise, I have not really been better or worse this week. Not being worse is great, but it’s frustrating for me that I’m not getting any better and that I still need babysitting, as such. We’re in the process of setting up a service through https://www.lotsahelpinghands.com/c/717872/ for close friends and family to offer support. Feel free to sign-up if you really want, but it’s really only going to be using it for proper respite for my Mum, rather than a quick drop in. I think people might be unaware of how much help physical help I am needing at the moment. Dropping in for a cuppa is wonderful, and I love it (please don’t stop!), but it’s not respire, unfortunately, we’ve been needing a bit more than that at the moment. God I hope that changes soon and I start getting some strength back! I’ve had a personal alarm system installed, so I can be safe at home my myself. The nice man – too nice if you ask me – spent nearly 4 hours getting it up yesterday. I was told it would take a couple of hours, but he just wanted to talk. I’m not sure I was even answering him by the end. He said he often gets horrible customers who try to hurry him up and think it wasn’t going to take long, so I felt bad about hurrying him up.

Despite what he might have thought, me semi-invalid on the couch, I had things to go!! This cancer malarkey is a full-time job. Appointments of all kinds, morbid things to think about, regular everyday things such as wills and cleaning … I have no clue how I ever has able to hold down a full-time job. I suppose whatever life throws at us we just get it done.

On top of this, I let the council cleaner get talking to me today as well. Moral of the story is, I need to find a way to stop being so nice to trades that they stick around taking afterwards/instead of doing their jobs, without being too mean.

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A long-awaited update from me!

Ambulance

I think there’s a lot to update, however it will be slow going for me for a while. I wan write ok-ish, but I wasn’t really re-read what I an writing well, and I definitely can’t read properly, even close. I know that’s difficult for people to comprehend, but deal with it. I have enough to dead with without endless questions about why I can see but not read, and why I mix my letters up. I know you are only interested, but please try and think of things from my perspective.

Yesterday on the way back from Peter Mac in patient transport, there was another family going to Deer Park. They got talking to us. Thankfully it was a short trip for is to. The first question from husband was “So you’re at Peter Mac, it was on the news the other day they’ve found a cure for cancer through stem sell research”. My reply was along the lines of “unfortunately not, all cancers are different blah blah”, not much point trying to educate too much. Then came a bit of an interaction about what was “wrong” with each of us, me with incurable cancer and the lady with dialysis three times a week and all kinds of other diabetes related problems. Both were morbidly obese.

They were both the whiny types, asking if I was happy with the treatment I was receiving (for fee!!) clearly not happy with theirs from St Vincents, also for free, but lets not go there. I met another of them at chemo yesterday as well, some people just don’t realise how lucky we are in Australia, or choose to wallow in their own self pity.

I am getting somewhere with this story, I promise! The lady, who by now I was only half listening to, as I was sure she was going to say something that would make my eyes roll internally, then decided to tell me “what I’ve got is far worse than what you have because I am suffocating all the time”. She mentioned a couple of other tings that made what she has worse than what I have, but I wasn’t really listening. Yes that’s horrible what she has, really awful, but how is dying slowly an painfully of any disease worse than dying slowly and painfully of another? She then talked about euthanasia briefly and not being able to go on overseas holidays anymore. She asked me about my holidays, and I said I couldn’t go on them anymore either. They raised their eyebrows at that.

It’s an experience best overlooked. I have mostly only met amazing and inspiring people on my time in chemo and being ferries around in patient transport. The downers are an anomaly. People do keep telling me how positive I am, but I can’t see any other way of doing this. It’s not anything conscious for me to “be positive” and frankly it drives me mental when people tell me to do so.

I am currently being slowly weaned off one of the steroids I’ve been on for some time (way too long medically!). Its hard work physically and mentally, as I’m being put in a medical downer. It’s no fun, but it will pass and things will get better. It’s just a slow process, and I fell like I’m tired all of the time. For that reason I really need to look after myself, and that realistically means I have to slightly ignore others wishes, now answer every incoming phone call, and be generally a bit crap at getting back to people in general. The same goes for my family, who are bearing the brunt of communications. Its tiring for everyone.

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Posted in Health Stuff, Life's ponderings
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