Discovering my 'new normal' after breast cancer diagnosis at 34.

27 December 2011

2011: It's a wrap. 2012: Bring it on.

First of all, I'm sorry I have been so slow at posting since the last post. I have been very busy with my "normal" working life, which I am thrilled to announce is somewhat returning.

Yes, I still..
  • get tired
  • am much of a home-body
  • work part time, although this is slowly increasing and I'm pushing it to the limits
  • don't drink (a hangover after half a glass of wine really doesn't make it worth it)
  • need naps during the day, although these have gone from 5 days a week napping to around 2 - 3 
  • get driven crazy with fatigue and migraines on a 4-weekly basis thanks to Zolodex
  • am on Arimidex, which is a heck of a lot better for me than Tamoxifen was
  • am exercising - running - perhaps not as much as before but at least once a week
  • am going to do the 2012 Mothers' Day Classic
  • am not sure if it's Mothers' (collective) or Mother's (singular). I am veering towards collective.
The beginning of 2012 marks 3 years post-diagnosis. Three years ago my future was a complete blank slate. In 2009 I really had absolutely no idea what I would be doing in 2012; and no idea I would be doing what I am doing.

2012 also marks the half-way mark of my 5-year treatment plan, half-way through Zolodex+Arimidex. I can distinctly remember the half-way mark of chemo: 3 sessions down and 3 to go. Now it's 2.5 years down and 2.5 to go. I am very much looking forward to being off the drugs, but anxious about it too. On the odd day when I forget to take my Arimidex, I get that glimmer of exuberance and energy levels that my body is capable of; it's not until the next day when I see the pill still in its packet that I realise the reason for my temporary new-found but soon-lost surge of vitality. At least it's there - waiting to be captured in its full essence in 2014/15.

So, bring on 2012 and let the countdown continue.

HAPPY NEW YEAR!

14 August 2011

Creations: Portable Desk & File Storage

Mike likes to work on his computer and filing while sitting on the couch, because it's nice and warm in the living room. He bought himself this nice handy plastic filing box from a local stationery shop and I spent a few weeks looking at it on the floor of the living room. I couldn't think how to make it easier for him to move it around and have somewhere to keep his laptop until I realised this bedside table from Ikea might do the trick. This is what it normally looks like:
I had to alter the height of the bottom shelf to make the cavity larger and as you can see I have flipped it over so that pens etc do not roll off the sides. There is enough room for a mouse or for charging his phone from the laptop. I got the castors from Ikea too, and drilled holes into the top (my base) and glued them in place.


The bedside table was $AU14.99 and the castors $AU 1.99 for a 4-pack. It works a treat and we can roll it away into the spare room or even into Mike's office in the front room if necessary. It also means the laptop has its own place.

28 July 2011

Cancer vocabulary: 'Awareness'

People often talk about "awareness" when referring to a certain cause or organisation. "Raise awareness" they say. What does this really mean?

According to my dictionary, aware is an adjective:
  • "having knowledge or perception of a situation or fact"
  • "concerned and well-informed about a particular situation or development"
... and the noun awareness in the thesaurus has these synonyms:
  • "consciousness, recognition, realization; understanding, grasp, appreciation, knowledge, insight; familiarity; cognizance"

    Well, here's what "raising awareness" means to me:
    • Awareness about (knowledge of) a particular support organisation and what they can help with. For example, being aware of the Cancer Council Queensland means I am able to contact them if I need to, maybe to ask some questions or get some information.
    • Awareness is also about early detection - noticing any unusual changes to your body (if you can; some changes are not easily detectable) and seeking advice and assistance if there is something that doesn't seem right.

    What does "raising awareness" mean to you? Is it simply a euphemism for "raising money"? Or is it more than that?

    21 July 2011

    My 'other life'

    What do I do when I'm not sewing headscarves, running, or blogging?

    Tutoring
    My professional background is in English language teaching. I've been doing that for almost 10 years now.

    The great thing about this job is that I have been able to work it into my 'new normal'. For most of my life, I've worked as an employee at various language organisations but now, in addition to Hatiheri, I run my own English tutoring business. I'm "English-Tutor-Brisbane" and I teach from my home, via skype, and online via moodle. Many of my students need assistance with IELTS writing in order to get that elusive band 7 (or band 8) usually for nursing registration or for permanent residence. I've developed my own course with original materials to help them with this. The flexibility is great in that I can choose my own hours.

    In addition to this, I've recently started contracting to OET Online, developing and writing materials for their website and new face-to-face teaching course. I also tutor OET reading and speaking students using skype and guide students' writing. OET is the 'Occupational English Test', a language proficiency test for medical professionals wanting to work in Australia and New Zealand. It's a very interesting job because I have had a fair bit of experience both as a patient and as an EFL teacher. Again, I can work to my own schedule, which is ideal.

    Volunteering
    I volunteer with Look Good Feel Better at the Royal Brisbane and Women's Hospital every month. We do a workshop on skin care, make-up and hair accessories (wigs, turbans) for people going through appearance changes due to cancer treatment. I love working with our fabulous team there.

    18 July 2011

    Running Accessories: ipod


    Recently I wrote that I like to run because I don't need too many peripherals. I still maintain that a decent bra and comfortable, functional shoes are all that are necessary.

    However, lately I have been running with my new 'toy', an ipod nano with the nike+running attachment. The red oval shaped device attaches to my shoe and the white part attaches to my iopd nano. It has a pedometer which keeps track of my 'workouts' (as they call them). It's very handy because once calibrated, I can use it to check how far I have run. I'm usually checking it every 100m towards the end of a run, trying to get to that elusive 8km! While I run, I can also listen to music playlists, podcasts, or the radio.


    At the end of every run, I can upload my data and see how I am going and achieving my goals. I can keep track of my workouts and check if I am keeping up with the programme I set for myself. I can also share my results on social media sites, map past and future runs, and play online games with other runners. I haven't done the last one yet because I don't really have that competitive edge, but I can see the attraction.

    Here is one of my runs, displayed on my nike+running website.

    16 July 2011

    Media: Brisbane Running Festival

    This is from the 'Brisbane Running Festival' website:


    Your inspiration Inspired to run because "I want to stay alive"
    Distance Brisbane 10km Fun Run
    Name Tish Kirkland - (Support Tish as a Hero on EverydayHero and help raise funds for Cancer research)
    Where do you reside Milton, Queensland
    Favourite Food Norwegian "Gjetost" goat's cheese
    Greatest Achievement Outside of fitness: conquering breast cancer (or more accurately: conquering chemotherapy). Fitness-related: running 5km without stopping!
    How far have you come since your diagnosis? That's a difficult question. Since diagnosis in January 2009, it's been a huge roller-coaster: physically, mentally, financially and emotionally. It was a rough ride for the first 10 months and continues to be a steady but challenging one to this day. I started running only 3 months ago (March 2011) to train for the 4.5km Brisbane Mother's Day Classic and two weeks after that I ran 5km at the Rotary Fun Run at UQ. Dealing with the side effects of ongoing treatment is an uphill battle.

    I find that I like to use any (and all) energy I have to run, but that might be followed by a 1-hour nap to recover. I run so that I can stay within my BMI, which means my chances of cancer returning are reduced but also so that if it does return, I can fight it with all I've got.
    Any tips for those competing Do a few practice runs of the circuit. Train with a couple of friends and then run with them on the day. You'll know your pace and it's nice to run with others.
    Do you have any advice to other cancer survivors out there? I don't think cancer survivors need any advice from me - they know they are awesome. But if you've just been diagnosed or are going through treatment: go for a walk every day. Even 10 minutes, which was a true struggle for me (Heussler Terrace!) helped in the long run. I would be so exhausted after a walk and might sleep for hours afterwards but it really helped me get better. And if you've had surgery: do the homework stretches your physio gives you. It's a drag at the time but again, it pays off. I think the worst thing about cancer is the fear of the unknown. Don't be afraid to ask for help.

    The major beneficiary this year; Cancer Council, has a hotline - use it! (ph. 13 11 20) I had a hard time sorting out what the different organisations were, so I've since listed a "who's who" of cancer-related resources on my website. And for friends and family of survivors - be patient. When the intense treatment finishes that is just the beginning of the patient's struggle back to normality.
    What has inspired you to participate in Brisbane Running Festival? My body has been through the wringer with cancer, surgery, chemotherapy, radiation, and now hormonal treatment. Now it's time to treat it with some respect and give it a good chance of getting back to normal - and hopefully beyond my previous 'normal' to an even better condition. They call life post-cancer your "new normal". It does change your life; I was never a runner and now I run regularly.

    I was forging a career and I suddenly had to take time out of that. I was hoping to start a family and I had to put those plans on hold. My "new normal" is definitely a new life. Part of this has been the evolution of my own business, Hatiheri - headwear and accessories for hair loss. I can still only work part time, and the challenge of running my own small "cottage industry" is perfect for me
    Anything else you want others to know? http://www.hatiheri.com & http://hatiheri.blogspot.com And I am happy to report that I can now RUN up Heussler Terrace when 24 months ago I could barely walk up it. I think about that every time I struggle up the hill.

    14 July 2011

    Creations: Headphone Hat


    I'm the first to admit that running can get a bit boring, especially if it's for anything more than 35 minutes. I can usually keep myself entertained with thoughts for a while but then sometimes I like to listen to something while I'm running. I especially like BBC4 Podcasts or 97.3 FM.

    However, I really don't like headphones in my ears and I've heard (haha) that they bounce out when you're running anyways. I also didn't like the idea of the hook-over-ear ones as I wear glasses or sunglasses and I thought the ear hooks would probably annoy me.

    As a result, I created my own headphone device - my headphone hat!

    I stitched a little elastic onto each side of my hat just above the ear, and another one at the back adjustment strap to hold the cords. That runs down my back to attach to my ipod nano which snugly fits into a back zip-pocket of my running shorts.

    It's perfect for me because although I can easily listen to my podcast or the radio (provided I am not in a heavy traffic area), I can also listen out for other sounds like cyclists, cars, other people, pedestrian crossing signals, etc. I like to be able to hear the world around me. Plus, I ALWAYS wear a hat when running. It's perfect sun protection and sweat mopping - and now entertaining - at the same time!

    12 July 2011

    RBWH: Radiation Planning

    I took some photos of my skin after my radiation planning session, which took place at my hospital, the Royal Brisbane and Women's Hospital (RBWH), on 16 June 2009.

    The main thing I remember from the session was having to lie VERY STILL and that it was COLD in the room. One of the technicians had lovely warm hands, which made a huge difference to my comfort. I got my little tattoos that day - you can see one tiny blue dot on my sternum and one under my arm. The tattoos didn't hurt: just a prick with a needle and a dab with some ink and they were done.

    What's really interesting is that later, when the skin became red from the treatment, the red marks are EXACTLY within these lines. They said it would be accurate, and the were right! NB Blue patch is still from the SNB dye on 13 Feb 2011.

    You can see more photos of my treatment on my website: www.hatiheri.com

    10 July 2011

    Nasties: Waking up with mild depression



    For the last 2 weeks I have been waking up feeling 'low'. Just before I wake up in the morning, it seems I have a bad-feeling dream and then wake up with that same anxious/sad feeling I have had in the dream. I usually feel better as the day progresses but then in the evening I dread going to bed because I don't want to wake again with that semi-depression.

    I don't know what's caused it. I eat well, sleep through the night (except for a regular nightly trip to the toilet), exercise nearly every day, and now have a paid job working from home. Admittedly, I do miss the company of other people during the day. The cats and my internet friends are a good substitute but are not quite the same as the camaraderie of a staff room. I get a bit lonely but on the other hand I have freedom to run or nap whenever I want to.

    It could be the mattress. We got a lovely new mattress a week and a half ago and it has a funny 'new mattress' smell. I wonder if that is somehow triggering some (unknown) uncomfortable memory? As the smell has subsided, so have my bad wake-ups. This morning, for example, I felt a lot better. Having said that, I sprayed some 'Sweet Dreams' pillow spray onto my pillow last night and maybe that helped (or the placebo effect helped - either way it helped so I'm happy about that!).

    I was very close to giving Beyond Blue a call just to talk things over. I won't rule that out and will monitor the situation for another week. I have been off Effexor now (I was on it for hot flushes when I started Tamixifen in Sept 2009) for about 3 months and I would rather keep it that way. I'll keep you posted.

    08 July 2011

    Inspiration: Running People


    Ask me 2 years ago if I would ever consider running for fitness/fun, and my answer would have been a resounding NO.

    I watched some of my friends get into running, namely Zoe and Fi. I admired them for their strength and stamina, and for their perseverance in what seemed like a very boring and taxing 'leisure' activity. They even ran in the cold and rain, which I thought was courageous (I still won't run if it's raining).

    Later, when I was contemplating running for health/weight control/fitness, I read on Facebook about my friend Tina's success with her fitness in Melbourne:
    Tina - before and after
    She is absolutely amazing and a true inspiration. It got me thinking: Can I do that too?

    More locally, our neighbour Anna, our good friend Tymara and my cousin Christie all go for regular runs and all have bodies to die for. I wanted to be like them!

    Meanwhile, I started training for the Mother's Day Classic. Team Tish members Tymara, Carly, and Louise did a couple of early runs with me until it got too difficult logistically. New friends Julie and Alexis kept me company on early Sunday morning runs, and Bronwyn came along for a couple too.

    I was amazed and surprised how many people DO run, and how good it actually feels.

    Thank you, my running friends, for inspiring me and encouraging me. You are truly wonderful!