Shrinking the Silence

Sharing a voice on living with rare disease

Letter of appreciation — August 25, 2019

Letter of appreciation

I never would have anticipated having such grief and emotions over your departure from my treatment team. 

I’ve cried multiple times and then when I thought I had come to terms with the change, I felt all the emotions again when I had my first consult with my new oncologist. 

Funny that just like any relationship breakdown, there are triggers and reminders. The trigger for me the other day was being in the consultation room where so much has happened, with a new doctor – starting a new chapter in my desmoid tumour adventure. 

I realise that incredibly good and incredibly bad news was delivered there… and ultimately… trust, report and a caring doctor/patient relationship was formed in consult room 2. 

I’m not an easy person to win over. I like to challenge things and find ways to maintain that little bit of control in my life. You picked that up from the first few appointments and worked that into how you talked to me, and it didn’t go unnoticed. 

In the early days, every time i saw you I was incredibly nervous about what news would be shared, what my scan results would be. Every time, you delivered news to me in a calm way that made me feel I could keep going and have complete trust in the process.  Here I am, three years later and still showing up every 2-3 weeks for treatment.

Trust takes time to build, but with my rare and aggressive tumour…time wasn’t on our side, yet you managed to get me onboard with starting chemo. When chemo wasn’t slowing down the tumour at a satisfactory rate,  you took ownership of my care during a multidisciplinary team meeting where the general consensus was to operate. That was the moment I really knew you were on my side and were willing to go all out to find the best treatment for me – always with quality of life in mind. 

A rare disease and tumour like a desmoid isn’t easy to come up with a treatment plan for. It really touched me that you found opportunities whilst overseas for conferences to reach out to drug companies trialling treatments for desmoid tumours to find out more. 

You may no longer be my oncologist, but I will always remember everything you did for me through the hardest and scariest time in my life. 

Reflecting on my rare disease journey — July 4, 2018

Reflecting on my rare disease journey

I started my blog and sharing my story because of the isolation I felt, the intense silence I felt around rare disease in my daily life.

Hopefully I have helped a little and will continue to shrink the silence for those who read my story.

In my own experience, since sharing my story and joining the online social community, I feel like the silence has shrunk for me.

Continue reading

Acknowledging my medical trauma, three years on — May 2, 2018

Acknowledging my medical trauma, three years on

In September this year it will have been three years since I lost my bowel, it’s taken me this long to fully appreciate how much this has affected me. The bowel is a funny organ to lose. You often hear of throwing parties before amputations or things like that. When it comes to your bowel, how do you send it off in style? It’s not exactly an organ we talk about openly.

My fight or flight response at the time definitely was to fight. I pushed through and didn’t let my emotions get in the way of moving past each hurdle and making a full recovery, although very importantly I did start seeing a psychologist because I did have a lot of fears and anxiety around the diagnosis. I had no idea how to process the news that I needed to have major surgery to remove my bowel. I barely knew the importance of my bowel (I definitely do now that I no longer have it!).
Continue reading

The reality of being brave — March 7, 2018

The reality of being brave

I recently saw a fundraising page for someone shaving their hair for charity. What stood out to me was the campaign logo which said “be brave & shave”. Don’t get me wrong, I’m all for campaigns like this that get people involved and raise money for an important cause, the problem I have is with the language used and assumptions it makes about what it’s like to lose your hair to chemo.

I’ve written before about how much I struggled with my hair falling out and as it continues to grow out I still to this day think of it as my biggest challenge to get through so far. Bravery is part of my experience but not in the way it’s sometimes depicted in fundraising campaigns.

Continue reading

Another year of being rare — February 28, 2018

Another year of being rare

Today is Rare Disease day. Last year on this same day was the first time I shared my story on social media and I can definitely say I’ve never put myself out there like that before, but I’m so glad I did because in the rare disease and chronic illness community, we need as many voices out there. I’ve also learnt more about myself than I could have ever imagined at the same time.

The hashtag for this year’s Rare Disease Day is #ShowYourRare.

Here’s what my rare looks like in a year:

  • Close to 50 regular blood tests, then add a few from hospital stays
  • My portacath accessed close to 50 times for IV treatment
  • Give or take 30 hot and humid summer days struggling to stay hydrated with no colon – the struggle is real
  • Unknown impact on my fertility
  • 6 day procedures
  • 2 new doctors making it a total of 6 specialists I regularly see
  • 1 amazing treatment with no name, keeping my desmoid tumour stable with next to no side effects, and all thanks to research.

Research also happens to be the theme of 2018 and is so important for rare diseases. Trial and experimental drugs, like what I’m on at the moment, offer so much hope for diseases like desmoid tumours where the treatment path isn’t as clear cut because there aren’t enough patients to base success rates off.

This year I will need to rely on research and other options once again because the stock of the drug I’m currently on expires this year.

I am also so lucky that my rare also looks like this:

file (2)

I have my challenges but my rare disease was caught in time to be treated effectively and not reactively, and I can continue to live a full life.

Shrinking and acceptance — November 21, 2017

Shrinking and acceptance

I call this post shrinking and acceptance because both of these things have happened with my desmoid tumour recently! My tumour has been stable since the start of the year, not to mention continually shrinking, and this has helped me accept it as part of my body that will probably always be there, but now I feel confident that it can be controlled and I am under great care.

Continue reading