Hey guys, how is lockdown treating you? I am so bored. Anybody else? Even though I actually leave the house every day for a good few hours for my nannying job, I'm finding the afternoons and weekends extremely boring... And don't try and give me things to do - I have plenty of hobbies, but nothing is getting me excited right now. I just want to see my friends and hug my family!
Alas, I shouldn't complain too much, as I know home is the safest place to be right now and I do not want to contract or transmit corona. I'm just ultra grateful that (as of yet) me and my family are all safe and healthy, I know so many who haven't been so lucky.
Now, onto the topic of this blog - today marks 5 years to the day since I was diagnosed with sarcoma. Hence the prosecco photo above, from Christmas, because right now I'm chilling on the sofa writing this in my new kuddly oodie thingy (maybe I'll show you at the bottom of this blog). Now, although the cancer is not gone, I am allowing myself to say I am a survivor, seen as I am currently surviving, and can now be part of those lovely lovely 5-year survival statistics! If you weren't aware, one of the ways cancer data is presented is by 5-year and 10-year survival rates. When I first started looking up survival rates (a dangerous game when you've just been diagnosed), I was confused by the way the information was displayed. I wanted to know how long on average people with my diagnosis survived, but instead I was being told how likely it was I would survive 5 years... It didn't make sense to me at the time. For some reason 5 years is the measurement of 'success', per say, when it comes to cancer. Anyone with any stage of cancer continues to be checked up on regularly for 5 years, even if they are in remission. It's because cancer *the bastard* has a tendency of recurring in that space of time, but normally after 5 years it tends to stay away (but not always, hence cancer patients really should be regularly checked on for the rest of their lives). After 10 years of being 'cancer free' you have an even higher chance of it never recurring.
My cancer is a bit different, acting very differently and somewhat more unpredictably than most others. Some people diagnosed with Alveolar Soft Part Sarcoma (ASPS) have been told they are cancer-free, only to have their disease come back many years, or even *decades*, later. Others with ASPS have had their disease remain stable for years without treatment, and then have it suddenly start growing at a rapid pace; and others with ASPS are unlucky and have rapid progression soon after diagnosis. It may have something to do with at what point people are diagnosed (e.g. whether the tumour is smaller or larger than 5cm can have a big impact on the disease); it may also have some relation to treatment courses which are different for everyone, as there is still no first-line of treatment for ASPS beyond surgery (traditional chemotherapy is ineffective) - it is difficult to get the data on this as there are so few of us ASPS patients; or maybe it has something to do with the genetic qualities of ASPS, which can vary from person to person, but again the rarity of us means not much research has been done on this.
Alas, I have managed to make the 5-year mark. What does that mean for me? Am I one of the lucky ones? In fact, I have beaten the stats! I am not a big fan of survival statistics, not for my type of cancer anyway, because it is so rare. When something is as rare as ASPS (0.2-1% of all sarcoma diagnoses,<80 cases per year in the US), there isn't much point in comparing your personal journey (I hate that word too but let's roll with it) with anyone else's. If one thing is for sure, your experience will be unique. Nonetheless, I am about to throw some statistics at you, because numbers are fun. People diagnosed with metastatic ASPS have a 10-40% chance of surviving 5 years (according to NCI), and if I were to take that stat to be golden then I have survived the odds! Woohoo! But apparently overall 20-year survival is only 15%. Damn.
But! There is hope! I am lucky that this is an often slow-growing, sleepy type of cancer (often described in reports as both an aggressive cancer, but also one with long 'indolent' courses... hmm). I am lucky because science is progressing at an exciting rate. Okay, well let's ignore the absolute CHAOS and TRAGEDY of Covid-19 that has caused a terrifying delay to cancer research (*lets out a heavy sign*). Ignoring that, since my diagnosis 5 years ago there have been many progressions in research and in treatment options. There is actually a new immunotherapy in America, that still isn't available outside of a trial but has shown really promising results in ASPS patients. I am on a drug right now, cediranib, that still isn't officially approved for use in sarcomas in the UK, but is working for me and has shown to work for many many years for some patients. 5 years ago I wasn't given much hope in terms of treatments, aside from surgery (which isn't always possible), but I'm seeing more and more drugs turn up as time goes by. The gift of time in my case really is a gift. It has taken me a long time to get to the point of allowing myself to feel 'hopeful', but seeing results from my current treatment is definitely helping. I will continue to be realistic, but even if this cancer is the thing to eventually kill me, the hope that I can live a reasonably long and healthy life is lovely. The tiny weeny bit of hope that allows me to think that I may eventually be cured (unlikely, but you never know) - well it's just nice to think like that sometimes.
If you would like to help me celebrate my 5-year cancerversary, please share this blog to raise awareness of sarcoma, or donate whatever you can to Sarcoma UK, a charity very important to me. We need to keep the momentum going for sarcoma research and awareness, so we can start reducing sarcoma fatalities. Thank you so so much if you do share or donate. It means the most to me.
Now I am going to make an aubergine parmigiana, and spend the rest of the evening doing the same thing I do every other night in lockdown - watch TV! The excitement is killing me. Maybe I will celebrate properly with a G&T...
Here's to hoping I will be back this time next year to celebrate being a 6-year cancer survivor.
Until next time,
M x
My Kuddly... it is like wearing a bed.