1. Can you tell us a little about yourself?
Hi! I’m Sara. I was lucky enough to grow up in Tamaki Mākarau with my lovely Mum and Dad. I still live here now, with my partner Thom and our spoiled but very handsome cat, Colin.
My happiest place is anywhere warm with an ocean I can swim in. Give me sun, salt and surf any day!
2. Hope did your sarcoma journey begin?
One morning I woke up with a sore hip. It wasn’t too painful and I’d been to the gym the night before, so I just thought I’d pulled a muscle or gone too hard. I thought if I rested it for a week it would come right. Unfortunately it didn’t, the pain got worse and I was limping around and starting to get a bit miserable. My friends and family were urging me to go and get it looked at.
I initially went to an Osteopath – still thinking it was a muscle issue. After a couple of sessions with her and no improvement she referred me to a Sports Doctor so I could get a scan and see what was going on. The time from the initial pain to walking into the Doctor’s room was only about 6 weeks but by then I couldn’t bear weight on my right leg without agonising pain.
He did a physical examination and established pretty quickly it wasn’t a muscle issue. So next thing I was off for an urgent blood test and same day MRI. The original plan was that he was going to call me in the morning with the results, but instead I got call saying it would be better if I came in person and to see if someone could drive me. By this stage I knew it wasn’t great news.
The first diagnosis was actually a bone infection in a large portion of my pelvis and hip. I was sent off to hospital immediately and told that I’d be there for two weeks while they dosed me up with some intravenous antibiotics. They also did a bone biopsy (drilling a little piece of my hip bone out) so they could grow the infection and work out the best medicine to treat it. My pain got better as soon as I was in hospital and on antibiotics but strangely they couldn’t find any infection in my bone.
After another few weeks of being a medical mystery and going in and out of hospital they took another little piece of my hip bone and some of the soft tissue around it. They ran a full breakdown and found the sarcoma. Apparently the sarcoma I have is very rare in adults – they only diagnose 1-2 people a year with it in NZ, so it hadn’t been anywhere near the top of the list when working out what was causing my pain.
3. What was the experience of being diagnosed like for you?
Even though there had been a few clues that bad news was coming (like not finding the infection and the pain coming back despite the antibiotics) it felt surreal to be told I had an aggressive cancer. Even more surreal to be told how uncommon it is. I was trying to keep my brain focused and ask all the questions I had. Once the Doctors left the room though I looked at Thom and just burst into sobbing tears.
The Sarcoma team does an amazing job of wrapping around you right from the start – I was told of my diagnosis by the Doctor who ultimately did the surgery to remove the cancer, but I also got to meet my Oncologist and Nurse Specialist at the same time. I felt like I had this team of experts who knew exactly what to do and I was in safe hands. I left that appointment determined to be the best god damn patient they’d ever had!
4. What kind of treatment have you had so far, and how have you been finding it?
I started off with some pretty intense chemotherapy which did its bit to stop the sarcoma spreading and reduced it in the soft tissue around my bones. I then had a couple of surgeries including one to remove almost half my pelvis and replace it with a custom printed titanium implant. Modern medicine is mind blowing!
I then had another couple of rounds of chemo and now I’m just on an oral version and some pretty close monitoring.
The chemotherapy wasn’t fun, but it wasn’t nearly as bad as I expected – I didn’t have any vomiting and managed to keep eating most of the time. The worst part was that I was having 10L of fluid pumped into me over the course of my 2 treatment days and I would puff up like a balloon. I looked ridiculous and it was not comfortable! Then I’d come home to recover and pee it all out over another few days. It also got a little harder with every round – taking an extra couple of days to recover. I had to learn to be patient with myself and not get annoyed when my energy didn’t come back as quickly as I wanted. I’ve been told to ‘slow down’ since I was in kindergarten, and now I had no choice. I’ve spent a lot of time on the couch this year!
5. Who or what has helped support you through this time?
I have been SOOO fortunate to have my family and friends rally around me in beautiful ways. Whether it was sending a cheerful bunch of flowers, bringing me a meal in hospital or just checking in to see how I’m doing. It all made me feel like I wasn’t doing this alone and that I was surrounded by love.
My parents have been phenomenal – they were devastated when I was diagnosed but very quickly become my most positive cheerleaders. After my surgery I had to move in with them during the week as I was like a demanding toddler – I was wearing a large brace to protect my hip while it healed and needed help getting it on or off, going to the bathroom, dressing myself, getting into or out of bed. All I could do was sit in an armchair. They took care of me Monday to Friday so Thom could go to work. I would have been over looking after me after the first few days but they never made me feel like a burden and couldn’t do enough to make me as comfortable as I could be.
My partner, Thom, was an absolute rock. He was at every appointment with me, asking questions and getting across all the details of my treatments. He cooked, cleaned, drove me around, helped me shower, made sure I was eating right, getting enough sleep, not being overwhelmed with visitors – everything. Despite his own worry and sadness he steadied us both emotionally and believed I could get through the treatment. I have never felt love like that before and I will never ever forget it.
It can be overwhelming at the beginning to think about all the things you’re going to go through on your treatment path. I quickly realised I just needed to focus on the next step in front of me and not worry about what comes next. I didn’t google a single thing and I didn’t want to know about the statistics – what I had was so rare I decided I was going to be my own statistic.
All of these things helped me keep a positive mindset. I couldn’t control my treatment, how my body might react or what the ultimate outcome would be, but I could control my attitude. It meant making the most of the times when I had energy and making sure I still did some fun things with those precious friends and family. Seeing me happy also made them feel better, which made me feel good – so it was a cycle of sunshine!
6. What have been some of the biggest challenges for you?
Emotionally, the hardest part of being diagnosed was having to tell my parents and my closest friends. I couldn’t get the words out without crying and I just felt so sorry that I was putting them through this. They were all amazing and were really positive but I do not want to have to do that ever again.
Physically losing my hair was tough – it was the fact it’s like a badge that says ‘I have cancer’. When you’re out in public it feels like everyone is looking at you and feeling sorry for you. I tried wearing a wig but it made me even more self conscious.
Socially I resented that I’ve missed so much this year. Everyone else got to get on with their life while I was stuck at home recovering. I’ve missed a wedding, celebrations, concerts, holidays and just fun things that I was planning to be at. I’m angry that time has been taken away from me.
7. What has helped you cope or find strength on tough days?
Recognising that today is a tough day but that it won’t be tough forever – and tomorrow could be much better. The whole experience is a rollercoaster so it’s good to remember there will be ups and downs – don’t get too fixated on the highs (otherwise you’ll be devastated when they end) or the lows. It’s all temporary.
I make sure I do the things I love, even if it’s in a diminished capacity, so that life isn’t all about treatment or recovery. I take myself swimming, eat delicious meals, plan time with friends.
I also find that it’s easy for every conversation to become centered around what you’re going through. It makes me feel much better and more connected when I hear what’s going on in everyone else’s lives. I’m often asking my mates to ‘tell me what’s happening in the real world?!’
But I definitely have moments where I just need to feel sorry for myself and have a big cry. I try to make sure I don’t ‘stay’ in those moments too long though. Get it out and get on with it!
8. Is there anything you wish others knew about living with sarcoma?
My three biggest tips would be:
- Meet your Clinicians halfway. Our health system works best when you are an active participant in your care. That means asking questions, making sure you understand what’s happening next and when. Who do you tell if something goes wrong and what should you be on alert for? What should you expect from your treatment and what does a good outcome look like? Your Doctors and Nurses can’t provide the best help if you don’t tell them how you’re feeling or what’s worrying you.
- Ask for the help you need. Everyone will fall over themselves to do something helpful for you, but unless you want a freezer full of homemade lasagnes, you need to tell them what help you need – a lift to an appointment? Company during treatment? A coffee and a laugh? If you’ve got more people than you need begging to do something you can always suggest they donate blood or make a donation in your name.
- Appoint a Communications Director. If you’ve got a big group of friends or family who want to know how you’re going it can be exhausting having messages and calls you feel you have to respond to (and repeat the same update). Get one or two people (but not your main support person as they need to be focused on you) to keep everyone else up to date. When you’re tired or feeling a bit fragile you just need to talk to them and they can let everyone else know how you’re doing and any help you might need.
9. What do you want your story to say?
This experience has left me feeling so grateful. Grateful to live in New Zealand with our health system (I know it’s far from perfect but it’s pretty amazing and it’s FREE!), grateful there are people who dedicate their professional lives to saving others at what must be a significant emotional cost, grateful for cosy beds, yummy meals, feeling the sunshine, things that make me laugh. I could go on but I already sound like a bad greeting card…
I am especially grateful for those special, special people in my life. The ones who were helping before I even knew what I needed and wrapped me in love. Those people are the richest treasure in your life. Love the shit out of them.