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.
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?