Before I start – this blog is a university project. I am studying a Bachelor of Arts with a double major; Internet Communications and Professional Writing. In a past life I was a blogger with a little following and this assignment has reminded me of how much I enjoy it. Along with some of my peers, I will be making the odd non-graded, not so grammatically correct entry now and in the future, and expanding the basis of the blog. Mostly for myself as an accountability exercise and to communicate with the extended spoonie community.
In my RA life I have had the greatest fortune to have biologics treatment. Without it I don’t believe I would be walking — but it does come with risk. When I was first prescribed biologics I was warned by my Rhuemy that it can increase the likelihood of cancer, especially skin cancer. The epic Photoshop job I have done on my avatar hints at what I look like IRL but I resemble an older version of Pippy Longstocking. Ginger twinges and freckles for days. The good news is that research over the last few years has indicated that the risk is not as high as once thought and that it may be our chronic inflammation that increases our chances of cancer. Either way, we still need to be mindful and pay close attention.
This is where I have made a bit of a boo boo.
One of the symptoms I have is chronic hip pain. Most people with arthritis will have it and we apply our lotions, get injections and go on living. While my other symptoms have waxed and waned, the hip pain has been persistent and worse. At my last visit with the Rhuemy he was perplexed as to why it was still happening. MRI’s and scans were okay. When I pointed to the region where the pain comes from he wanted to check my ovaries for referred pain.
Some more internal *shudder* and external ultrasounds and cat scans show that I have fibroids scattered about the shop but one large lesion or mass where the pain is. We are super hopeful that is just another harmless fibroid and I should have an answer to that very soon. Hopefully today.
I am quietly shitting myself. I caught an interview on Life Matters during this process about ovarian cancer. It’s a scary mofo with not great odds with a max of 5 years, and as a woman, I know very little about it. I check my boobs, I get the schmears. Ovaries? I dunno ¯\_(ツ)_/¯ Aside from the catch and release, I’m not that up on them.
What gets me about this whole scenario is that because I put so much down to symptoms of my disease I may have missed something. Something huge. Like a tennis ball. Ok so not that huge, but huge for your insides.
I have an appointment today with a gynaecologist oncologist, one of only two where I live. Give it up for private health insurance. Today’s outcome could be anything from a pat on the head to a surgery which could then result in a pat on the head or a timeline.
In my head, I have prepared for every scenario including the clichéd bucket list. Dramatic I know.
But this is something that I have learned this week. My life is affected by chronic illness and the point of Kicking Hoops is to inspire to make the most of it. I have an acute understanding that my life has limits, whether it be activity, travel, where I can live, what I can eat. This week has reminded me that life is finite and I have not been treating it that way.
- Why aren’t I living near the beach – or at least saving for it.
- Why am I spending money on takeaway coffee rather than holidays?
- Why do I worry so much about what people think?
- Why do I have so much crap?
- Why don’t I rollerskate?
- Why so serious?
I look back over the last few years and all I can see is wasted time, money and opportunities. No matter the outcome today I want to hold on to that fear—but perhaps dress it up as knowledge— and start living my life, for me and those that matter.
A beautiful friend who also had a c word scare recently was explaining to me about how her perspective on life has changed. She referred to her life as her little life and how her primary focus is about her family, and the little things she gets joy from. I hope like her this is nothing more than a scare — but that like her, the lesson remains.
I also hope to be living in a beach house.
Note: I wrote this yesterday. My appointment didn’t give me the answers I wanted and I am scheduled in for a hysterectomy next week. I will have results a week later.
This is my Shitless List I wrote in the waiting room. I don’t like cliches.