21st January Comes Around Again...
21st January 2016
Forever etched in my brain
As if January wasn't a miserable enough month (something about the moon right now?).
You guessed it, 6 years ago today I was diagnosed with Alveolar Soft Part Sarcoma.
It's pretty wonderful to have lived 6 years since my sarcoma diagnosis. So many are not as lucky. As I am sure I have stated before, survival rates for advanced sarcoma are not pretty, and of course, to anyone living with metastatic cancer - every year of life is special.
That being said, this date is something of a 'trauma anniversary'. It was the day my whole life changed. I feel so dramatic saying that, but when I really think about it (something I avoid doing most of the time), it's true. Being told you have cancer is life-changing and traumatising. I was 18, had just started at university. 6 years feels so long ago. I am 24 now. 18 to 24 is such a transformative period of your life and mine has been forever stained by cancer. I look back on it now, and still find it hard to believe what happened to me.
My sister is 18 and has just started university. What happened to me 6 years ago is the equivalent of her being diagnosed with cancer right now. That terrifies me - I can't imagine it. It would be the end of the world. She's too young, she deserves to enjoy uni, I would be devastated for her. When I think about it like that, by actually envisaging a loved one going through exactly what I did, I can appreciate more what I went through (and what my family went through).
I am proud of everything I've achieved despite cancer. It's given me a real drive to raise awareness, improve prospects and support for others. Little 18 year old me didn't realise I would still have cancer 6 years down the line. I was sure it'd be over and done with quite quickly. I was told they would simply cut it out and then monitor me for 10 years.
'Scans every 3 months for the first year'
'Every 6 months for the first 5 years'
'Every year until the 10th year'
'Oh my god, this is going to be a thing for 10 whole years? Scans every year? That's mental'
Poor naive Maddie...If only it were that simple.
'Traditional chemotherapy is ineffective on this type of sarcoma'
'Great! No sickness! No hair loss!'
Again, I was naive. I didn't realise that 'no chemo' translates to 'no effective treatments'. No cure. In this case, anyway.
I have learned so much about sarcoma, especially Alveolar Soft Part Sarcoma, over the last 6 years. I've learned how little research there is into sarcomas. Sarcomas make up around 1% of all cancer diagnoses, they are rare, but not rare enough to deserve so little research. Metastatic sarcoma is, in almost all cases, incurable.
I've learned so much about cancer. Stuff I'd never expect to understand or know at my age. Words I wish I didn't need to know. Words like sarcoma, metastatic, remission, NED, terminal, primary and secondary, stage 4, unequivocal, innumerable, nodules, radiology, CT, MRI, PET, cannula, contrast, margins, Tyrosine Kinase Inhibitors, systemic treatment, clinical trials, pulmonary, ablation, scapulectomy, cryoblation, excision, compassionate grounds, stability. The list could go on.
I resent being told and made to believe that cancer has taught me to live each day to the fullest. To be grateful for each day. It hasn't. Anyone would tell you I was so happy, bubbly, grateful, before cancer - I don't believe I needed this. I believe I'd have been better off without this. My life would be better right now if I didn't have to take daily chemo pills.
However, cancer has brought some 'unexpected positives', as my friend Bansri recently put it in a post. One of those is the people I have met, and the experiences I have had solely because of/thanks to cancer. The big C club nobody wants to be part of. So many truly amazing people have walked into my life, whom I'd never have met if I didn't have cancer. I now work in the charity sector, something I can't say for sure would've happened otherwise. I have raised thousands for charity. Something I definitely don't think would've happened without my diagnosis. I've been to parliament, to speak to MPs about sarcoma (wow!). I started my own blog! I've spent a week in Finland with someone I'd only ever messaged online before (my wonderful sarcoma sis, Danna) - and we became besties. I've been on the radio, recorded podcasts, had articles published about me. I've even been mentioned by Jeremy Corbyn on Twitter.
I've got a lot to thank cancer for.
I hate January 21st.
It was a truly awful day, and the next few days afterwards were some of my worst ever. The next 6-18 months were rough as heck. I would never want to paint cancer as sunshine and rainbows as in the above paragraph, because it's not. I find hospital visits at the moment quite difficult. Monthly check-ups, keeping on top of my prescriptions, blood tests, scans, pills. Trying to manage side effects. Some days forgetting I have cancer, and other days consuming myself with cancer.
I will take this opportunity to share with you all that my latest scans showed STABILITY! The best news I could ask for right now. I have been stable for a year. Which essentially means the little multiple nodules in both lungs are not growing. This is good news as growing cancer is not good. However, it does not mean I am cured, it does not mean I can stop taking my chemo pills. It just means we hold tight and hope the pills continue to give me stability for as long as possible.
I'm so lucky to be able to say I'm living with cancer but cancer does not define my life.
I hope 21st January has a slightly better meaning to you guys. And know that if you find cancerversaries hard, you're not alone.
Now, where's my cancerversary cake please????*
until next time,
*It's a thing. Google it.
p.s. if you want to help me you can do so quite easily by:
- Sharing my blog, raising awareness by sharing the word 'sarcoma' and telling people it's a type of cancer. Share on your social media channels, with friends and family, or simply have a conversation with a friend about sarcoma.
- Donate to charity. I like these in particular:
- Sarcoma UK; I am an ambassador of Sarcoma UK! They fund research, support, and aim to effect positive change for sarcoma patients and their families.
- Wigs for Heroes; a charity close to my heart for which I've volunteered for over a year now! They support cancer patients through hair loss, but also through treatment in general.