Travelling Down the Road

Since my last blog post, I went on a road trip (Melbourne – Cobram – Forbes – Mudgee – Tamworth – Coffs Harbour – Gold Coast), had Christmas and New Year in Queensland and then returned (Gold Coast – Yamba – Port Macquarie – Newcastle – Wollongong – Albury – Melbourne). It was really relaxing and fun to be out on the road with a different destination each day.

On my return, I was able to see the Oncologist at Peter Mac who had originally found my cancer had spread. After discussing my next set of options, we decided to have my ovaries and fallopian tubes removed, along with the unknown mass (sitting on my right ovary) – which would allow us to test it and tailor treatment accordingly. I had keyhole surgery at the Women’s Hospital on 25 January 2017 which went very well and the unknown mass turned out to be a benign cyst.

With no cancer in my ovaries, fallopian tubes or uterus, there was no tissue for them to collect which ruled me out of clinical trials, instead I am now on standard hormone therapy (Tamoxifen tablet, daily) and continuing bone density injections (Denosumab, monthly).

Sounds nice and simple? Here’s the strange part – my recent PET and CT scans show my T12 is playing hide and seek (he’s not showing up on my scan), but the lymph nodes on my chest are (and they are symmetrical). So to work out what is going on there, I have had a bronchoscopy to get a sample of tissue. So far it looks like it isn’t cancer, but not sure what it may be.

Last but not least, a routine blood test has shown that I have an underachieve thyroid. Which means more medication (Thyroxine Sodium tablet, daily) and monitoring.

It’s been a busy start to the year. I’m looking forward to it settling down and for my life to take on a more structured routine.

Trials and Tribulations

How does one get kicked off a clinical trial? Apparently, you take one tumour that is 13mm diameter in size and over the period of 8 months you measure it every 8 weeks via a CT scan. That one little tumour grew to 16mm, then 17mm, then shrunk back to 16mm and now it’s 19mm. The difference between 13mm and 19mm is over 30% and that is all it takes to keep me from continuing on the trial.

My health is fine… the many side effects, I have managed well. I have continued to work 2 days a week. I see the psychologist, the physio and the exercise physiologist, every few weeks. Most days, I knit or learn to spin my own yarn. I try to walk every day or get on the exercise bike. I drink smoothies and turmeric lattes to boost my immune system. I’m doing a lot of the right things.

I do get tired… I do get moody… I do stress when I should relax. Each day is a work in progress, but I try to do something nourishing for myself.

Coming off the clinical trial has been a shock, but it doesn’t define who I am or where my health is currently. It just means that I can’t continue to take extra medication (or possibly a placebo). I will continue on the “standard treatment” of Letrozole (hormone inhibitor tablet, daily), Goserelin (hormone inhibitor injection, monthly) and Denosumab (bone strengthener injection, monthly).

In the new year, I will have a new oncologist and a new routine – visits to the hospital every 6 weeks and CT scans every 12 weeks. It will be nice to have less tests and a bit more freedom. I’m not sure what the next step in my treatment should be, but will consider all options (including swapping hospitals). Whatever happens, I have to learn not to get too comfortable with it…

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Knitting Without Mistakes

Elizabeth Zimmermann wrote the book “Knitting Without Tears” as a guide for knitters to learn when and where to take short cuts. Extremely witty and full of useful tips, it is a fantastic read, not just as a book of information, but as a book of encouragement.

I should have read this book on Friday before I began the task of joining two pieces of my yoga wrap together…

This simple garment comprises of two sleeves and a back. No shaping, some patterning and some rib – nothing hard. That said, I had misread the instructions and found myself re-doing the trellis pattern four times! Once I got it, I was on the home stretch. I knit across the back and then well into the 2nd sleeve before I realised I would run out of yarn. Drats!

So I unravelled the 2nd sleeve and some of the back. Rather than re-knit the sleeve in the current direction and risk running out of yarn again, I decided to knit from the band up and join the two pieces together. Makes perfect sense… until I got to the grafting!

I watched some YouTube videos and set to work. The 1×1 rib on the edge stitches looks a bit messy, but I continued… 2 hours later, I’m still going and whilst the middle section looked fine, those 1×1 rib edges are just not right (tight with a clear ditch). By the time I finish, I decide to that I wasn’t satisfied and so pulled the last 18 stitches out.

I tried everything I could think of – grafting with a wool needle, grafting by knitting, and crochet grafting. How could these stitches defeat me! This is where I needed Elizabeth Zimmermann to tell me in her reasonable voice to put my knitting down and have a cup of tea!

Instead, I pulled the stitches out again and tried making up my own version. Surely if I just glare at the stitches for long enough they will do what I want!! After searching through my books and more YouTube videos, I come to the realisation that the only way to do it is with a two step grafting technique. By now it’s too late and the tears are coming!

Why does a piece of knitting bring out such emotion? For me, my perfectionist streak comes out. I know that finishing can make or break a garment. It can ruin a neat piece of knitting by rushing to finish those dreaded seams. As I am making this garment for myself, I knew that I would be looking at those stitches and feeling disappointment every time I went to wear it.

For now my yoga wrap is sitting unfinished in a project bag. I’ll get to it again soon, after I drink some tea, read some Elizabeth Zimmermann and make peace with my knitting.

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Time for Tea

What is it that makes tea so comforting and warm, like a big cuddle? Coffee can taste good and give you bursts of energy, but tea hits the spot with that “ahhhhh” sound. It can be relaxing and refreshing. It can give you 5 minutes away from your desk (or even at your desk) that clears your head and soothes your soul.

I drink tea all day long. I have a black tea after breakfast. Another mid-morning. Another after lunch. Then for my afternoon break, I swap to green tea (one cup a day is meant to have multiple health benefits). Then after dinner, I’ll have a flavoured tea (with black or green base). I love liquorice, ginger, chai, cinnamon. Anything warm and spicy.

How much of the fondness we have for tea is in the dried leaves and how much is in the ritual of it? Measuring the leaves (or grabbing a tea bag), waiting for the kettle to boil, pouring the water and then having to wait for it to brew and to cool down to drink. And we can only ever sip it.

In a world where everything is so fast, this tea making ritual is the 5 minutes that slows us down and makes us contemplate the world through a steamy lens. All the more reason to get that good teapot out and fill it up!

PS. I might just have to crochet a tea cosy. It could save me pouring so much cold tea down the sink!

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The Common Cold

You can determine when a common cold has got to you by the amount of knitting you are able to do.

The more knitting done shows the better you feel. Less knitting indicates low energy. Knitting with lots of mistakes indicates it’s time to take a nap and sleep it off.

Undoing your knitting for the fifth time indicates a state of delirium and you should not be making knitting decisions during this time.

So instead, I’ll watch some reality TV and drink endless cups of tea. If I’m lucky, I’ll fall asleep and dream that I’m knitting…

Stable

Stable is such an ordinary word and maybe that’s part of its beauty. My Oncologist has said that my tumours are “stable”.

I’m now 5 months deep into the trial. I’ve gotten the hang of my side effects – hot flushes, mood swings, slight fatigue, sore joints and feeling out of breath. Phew! It was very hard at the start not knowing what would come and how my body would react. Every pinch and pull becomes a potential side effect that gets recorded for future discussions with my Trial Co-ordinator and Oncologist.

I’ve also continued to see a Psychologist and a Physiologist (Lymphoedema Specialist). And added an Exercise Physiologist – to tailor an exercise programme to my specific needs. This has me walking every day and doing some resistance exercises (except for those freezing cold days when I refuse to leave the house).

I’m also now working 2-3 short days (4 hours) at the Wool Baa. It’s great to be back in “knitting land” and to be active on my feet and serving customers. This helps me remember that I’m a person first and a patient second.

Here’s to many more months of stability!!!

(Photo of interior of new Peter MacCullum Centre)

Weaving

I’ve been looking at woven wall hangings on Pinterest for far too long! I thought that if I purchased a weaving frame (via Loom & Spindle) then I could have a go at it myself.

I studied weave for 12 weeks or so in the first year of my textile degree, so one would think that it should come back to me quite quickly.

Warping the frame was very easy and with the help of various YouTube videos, I was on my way. Tabby weave and rya knots followed by some tapestry triangles. I’m not sure how to finish the piece yet, but I am loving mixing the colours and the simplicity of cotton stitches. Creating geometric shapes is so enjoyable and relaxing.

Clinical trial begins

Since the last post about my health, I’ve had a bit going on… mainly tests to see if I’m eligible for a clinical trial.

During the appointment with my Medical Oncologist at Peter Mac, where I was diagnosed with “secondary breast cancer”, it was mentioned that there was a trial taking place at the Austin Hospital and my oncologist thought I should go talk with them to see if it was something I’d like to join.

So that gave me a choice – stay at Peter Mac with the team that I was just starting to feel comfortable with or try my luck at the Austin Hospital.

The paperwork for the clinical trial was 25 pages of tests and side effects. My partner and I asked a few medical friends to look over it and point out anything we may overlook. This was a two week process of reading, researching and asking questions.

After meeting with the Clinical Trial Coordinator and the Medical Oncologist at the Austin, I decided to at least go through the screening process and see if I was eligible. How would I know if it was an option and how could I decide, if I didn’t have all the information?

The screening process took another 2 weeks. CT scan, bone scan, bone density scan, blood test, urine test, ECG and echocardiogram. This was a few hospital visits, but also just a tough time mentally. Feeling like I wasn’t yet a patient at the Austin and I was no longer a patient at Peter Mac. I was also no longer a person with curable cancer. Where did I belong in all of this? Where was I?

I did manage to find a physiotherapist (private) to help with my arm movement and cording from the lymph node removal. Yep, I still had issues from my surgery to deal with. I also started to see a psychologist (through Peter Mac). These two people kept me in check and helped me to deal with the physical and the emotional repercussions of cancer. They helped me to cope with this strange life transition that I was experiencing.

I also had some family visits (including my partner’s family) during this time and that was a great distraction and a great support. It helps put everything into perspective when you get to share such special moments with loved ones.

By now, I had decided that if I was eligible for the clinical trial, then I would participate. I’d already gone through the many tests, so it would get a little easier from this point. And so I was accepted and I began the trial on Tuesday 5 April.

Now I have an injection every 28 days (goserelin) and take some tablets daily (letrozole + trial drug). I visit the Austin Hospital every two weeks for progress tests. The medication is cutting off the oestrogen hormone in my body and so I will go through early menopause. I may also be receiving the trial drug which will hopefully stop the cancer from growing. Otherwise, I may be receiving a placebo drug which does nothing. Either way, my cancer’s growth should slow as it’s not getting the hormones that feed it.

It’s early days and apart from some mood swings, I’m feeling pretty good. I am starting to look ahead more than a day or a week. All in all, I’m feeling more positive and more like myself, not that I ever stopped, but I do think there has been a shift. Here’s to beautiful beginnings…

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Update to NiB Post

Since the last post, written by my partner Jen, we were approached to start a petition. This petition has given us a platform to tell our story and given people a chance to support us in a call for NiB to change their basic hospital policy. We have now reached over 4,000 signatures!

From this, my partner was approached by NiB’s customer resolutions team, as well as one of their senior group executives to discuss our concerns. Choice magazine issued a report which confirmed that NiB’s Basic Cover is a “junk” policy. This week, our story was also shared on The New Daily news website.

All of our concerns have now been put into a seven page letter to the federal Health Minister, the Hon. Sussan Ley and it will be interesting to see whether her office provides us with a response. Our story is particularly timely because the Department of Health has been investigating issues surrounding health insurance since last October.

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