Shrinking the Silence

Sharing a voice on living with rare disease

Cancer and me — January 18, 2018

Cancer and me

I have a funny relationship with cancer. It keeps wanting to crawl into my life. It has a few friends on the inside of my body who are getting the area ready for cancer to grow and be victorious. (as is the nature of FAP where pre cancerous polyps grow in my stomach, duodenum and ampulla). But I’m one step ahead and they’re out of my life before cancer can take over.

I do have a relationship with cancer’s close cousin, the desmoid tumour. Unlike your typical cancers he isn’t malignant and doesn’t spread. He’s benign, but don’t underestimate his power, he is on cancer’s side not mine. He wants to rule my whole abdomen and when left to his own means he will do exactly that and take down nearby places like my urethra in the process.

We’re getting along at the moment and I couldn’t be happier. My body has claimed back it’s own space for now.

Then there’s the people on my team, taking a stand against cancer with me. The nurses I see every fortnight for my treatment and my oncologist who makes himself available to answer any of my questions or concerns, and is finding me the best treatment. And my family and friends who are there for me all the time.

Keep trying, cancer!

2017, the year of my hair! — December 27, 2017
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.

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Hair goals – a braid! — October 3, 2017

Hair goals – a braid!

Last week I was so lucky and excited to stand by the side of my good friend as she got married. I was so worried about what I would be able to do with my hair as it is still very short – but the hairdresser was very nifty and managed to do a braid for me, which also matched the styles of the other bridesmaids with longer hair. Most importantly, the bride looked absolutely stunning 🙂

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7 months of hair growth and a bit of colour! — April 30, 2017
The overwhelming experience of losing my hair — March 19, 2017