21st January 2023 marked 7 years since I was diagnosed with cancer.
When you look 'alveolar soft part sarcoma' up on google, it is not easy to find any information. Once you dig, you read that it is an 'ultra rare' tumour, making up less than 1% of all soft tissue sarcomas (which themselves make up only 1% of all cancer diagnoses). It often spreads early, but grows slowly. Survival rates range from an 80% 5-year survival if the disease hasn't spread at diagnosis, to 10-40% 5-year survival if the disease has spread. 'Prognosis is poor', despite it's 'indolent nature'. Of course, survival stats aren't much use in such a rare cancer where the sample size is so small. It also means there is no obvious treatment plan. Essentially, it's a scary thing to be diagnosed with.
To reach the 5-year mark as a cancer patient is always something of an 'achievement', purely because that's how cancer survival is measured. I am now on my way to making the 10-year mark, and of course hopefully will get to the 20 year mark and beyond!
Cancerversaries are incredibly bittersweet. On the one hand, it's a reminder of the day your life changed forever, the day your view of the world changed, your health stripped away in a minute. I was 18 when I was diagnosed and so have never known adulthood without cancer. I have grieved over and over for the life I 'should have' had. But on the other hand, every time the 21st January comes around, it is a reminder that I have survived another year that wasn't guaranteed. It is worth celebrating that, after all, if we don't laugh we'll cry, right? I'd much rather choose laughter where I can.
Having said that, as much as I always try to stay positive, this January has hit me hard.
I am a summer baby through and through and I always find the winter/colder months difficult. January isn't the happiest of months, is it? So when January 1st 2023 started with an awful day of side effects and feeling really unwell, and the rest of January proceeded in the same vein, along with a CT scan (cue *scanxiety*) and my cancerversary, needless to say, this month has not been my fave. My body has really felt it, I have experienced a build up of side effects since being back on cediranib at a higher dose, along with bad scanxiety. I have tried to rest, but no amount of rest was helping. I have missed out on social events, I have barely been exercising, work has been hard, and I spend a lot of my time on the toilet - at all times of day including in the middle of the night. All of this has led to me actually taking a 6-day break from cediranib (which I usually take every day). At the same time as not feeling too well physically, I was feeling more and more anxious about my scan results - I have suffered the last few weeks, what if the cancer is growing and it wasn't even worth it?
I live with incurable cancer. I know that means that if the cancer grows and spreads and isn't controlled somehow it will eventually kill me. But, I never want to sacrifice my quality of life. It is a careful balance, of course. We want more life to do and achieve all the things we want to, spend more time with loved ones, enjoy our time and do things that are worthwhile - but if the treatment is making us so unwell we can't do the things we want to, and when that treatment is literally FOR LIFE, it has to be worth it. I hate cancer for making me think this way, but it is the reality sometimes. I know I need to find a better balance, and I need to take some action to getting back to feeling more myself.
With that in mind, I received my scan results yesterday.
I was given a heads up by one of the nurses on Monday over the phone that my scan results were ready and they looked 'reassuring'. Any logical-thinking person would be reassured by that news, but I am so lacking in trust with my body and the treatment at the moment that my head started spinning. Why not give me more detail? Why not say 'good' or 'stable' or 'shrinking'?? Now I have to wait until Friday to hear more? I'll go mad!!
Well, apparently 'reassuring' in this case did in fact translate to 'SHRINKING'!!!!
Any metastatic cancer patient will tell you that we hope for 'stability', we dream about 'shrinkage', and a 'no evidence of disease' is essentially a miracle and something I personally barely allow myself to believe will happen. We dread 'progression'.
I have multiple nodules in both lungs. After 3ish months back on a raised dose of cediranib, some of them have shrunk, the rest have stayed the same, and no new ones have grown. They are measuring only 10mm or smaller. This is amazing news! Of course, I am incredibly relieved. And of course, I celebrated with good food. However, in my negative-January mindset, I still have cancer in my lungs. A 10mm nodules is a 1cm tumour. That's not nothing. And, I have suffered for it. I would be more delighted if they'd said 'the cancer has disappeared'. Nothing is ever straightforward when it comes to our health, and I can't really help the negative thoughts creeping in...
So, my team have decided that, of course this dose of cediranib is 'working', it is killing the cancer cells, but the side effects are not worth it if I am not coping, especially while the cancer is contained to the lungs and is relatively tiny and not aggressive. There is no need for me to be suffering this much. So, we are adjusting the dose a little, by taking a lower dose for half of the week. The hope is that this will help ease side effects while continuing to kill the cancer cells.
I feel the last 6 months have beaten me down a little. On top of going through it with being told my disease was progressing back in May, being enrolled and then removed from a scary clinical trial, I have also had to say goodbye to a couple close sarcoma friends, and see other friends and family go through really tough times too. If I am feeling down, there is good reason. However, at some point I need to pick myself back up again and get back to myself.
So, to leave this blog on a positive note, I am going to get on with the things that bring me joy (including eating as much pizza as I want), and I have a LOT to look forward to this year. I am thrilled I have another 3ish/4 months before I next need to be scanned. I am booking a holiday to Australia to visit my sister who will be studying in Melbourne (!!), I have booked myself tickets to Reading festival (Lord help me), I will be seeing Harry Styles live in the summer with friends, by March I will hopefully have a driving license, AND my best friend has just had a baby so I am SUPER excited to spend lots of time with them and make happy memories. I am not setting any unrealistic goals, but just making sure I schedule in fun where I can and make the most of what I can.
Thanks so much for reading and being here and putting up with my ups and downs. Cancer is NOT a journey with a clear starting point and finish line. It's completely non-linear and it's perfectly normal and OK to experience peaks and troughs of emotion/illness.
Until next time,