It's been so long since I blogged, I'm not sure how to start! I started this blogsite when I had a lot of spare time, time to think and reflect and be creative while I lived and studied in Rome back in 2017. The blog was borne out of loneliness, a feeling of not knowing how to cope with my diagnosis, and a desire to help others feels less alone. Now, I'm a fully-fledged adult (well, still living at home so not 'fully'-fledged...), working a grown-up 9-5(ish) job and still plodding along with the whole 'having cancer' thing. Finding the time and energy to blog is difficult. I share brief and regular updates on Instagram (you can follow me here) which is much less draining for me than uploading a blog.

This year has been very full-on where the cancer is concerned and I haven't been in the right head space to publicise every detail as it's happened. However, I still really want to share what I am going through. Writing and sharing helps me to process, and I know if helps others. I continue to find myself in a position where finding personal stories similar to mine is so comforting but they are so far and few between. Cancer is portrayed as something horrific with gruelling treatment that ends in either survival or death. We don't often read about or see the complicated stuff in between, or stories of people living with it. That is the stuff I am longing to see and constantly seeking out. So I am here to share that stuff! Living with incurable cancer from the perspective of a (now) 27 year old.

That said, it should be noted that you are never getting the full story. I may share a lot of my health and personal experience and I probably share more than most, but I do keep a lot to myself. Some of it is too personal to share, and impacts other people. I will only ever share what I feel comfortable sharing, but I do hope that what I tell helps some of you also going through it to feel less alone, or for people close to me to better understand what has been going on.

My plan is to take a leaf out of my friend Jen's book (she writes an awesome blog called The Cancer Chronicles!) and write everything up in several posts, rather than attempting to summarise the past 10 months in one. That would be a long read and would take me ages, and let's be real, I would probably never finish it! So, we're going to kick off at the top of the year. December 2023 and January 2024 - what went down?

To get to the point, my cancer is progressing. That is, the nodules in my lungs are growing.

I had my usual CT scan of my chest in December, just before Christmas (it's always bloody Christmas time - tralalala!). These scan results actually sent us around the houses quite a bit.

At first, I was told that there had a been a small bit of growth, but it wasn't major and wasn't a sign that my treatment had stopped working. It was only 1 or 2 nodules. We may be able to ablate the big 'un. While I was a tad unsettled by this news, I wasn't panicked.

However, a few weeks later I got a call from my consultant. They had looked back at my December scans in more detail and had discovered that in fact many nodules had been slowly growing for some time and my disease was no longer being managed by my treatment. It wasn't just one or two growing nodules, it was roughly a third to half of the nodules that were growing. And I have about 30 nodules across both lungs. Ablation wasn't an option as it isn't an effective way of managing several nodules. We needed a change of treatment.

Safe to say at this point I was thrown. Not the news I had been expecting.

The treatment being suggested was a Clinical Trial run by UCLH - I happened to know a LOT about this trial, as I had nearly been enrolled on it over a year ago before being pulled at the last minute. I would need further tests to check my eligibility but this seemed to be the best plan. There are no approved treatments for Alveolar Soft Part Sarcoma, chemotherapy doesn't work, surgery is the only curative treatment so when that isn't possible our only option is to hope for clinical trials, or treatments given on compassionate grounds. My treatment 'plan' is essentially trying different drugs, hoping they stabilise or shrink the cancer for as long as possible, until they stop working at which point we search and hope for more options. Cediranib worked for me for about 3 years, keeping the cancer relatively stable, which is a long time to some but in your mid 20s - 3 years is nothing.

Speaking of time, January 2024 marked my 8th Cancerversary. 8 years since being diagnosed with cancer. I felt a celebratory cake was in order so my brother came over and baked us all bread and butter pudding - it was delicious! Anniversaries like this are bittersweet (happy to be alive, but traumatised by the memory of the day), but I'll be damned if I don't get some joy out of it.

So, in February it was confirmed that I would enrol on this clinical trial. However, after some scary warning signs from my body, I was determined to go ahead and preserve my fertility before starting this trial. However, there is no evidence that either Cediranib or the clinical trial impacts female fertility or reproductive health long-term, and there were concerns from my doctors (delaying treatment, dangers of fertility preservation due to messing with hormones and invasive procedures, the possible reality that I'll never be well enough to carry a pregnancy), but this was something I was very sure I wanted to do - there was no hesitation from me. Thankfully, the fertility treatment was approved and I underwent that process from February to April.

I may go into more detail about that process at some point in the future but for now all I'll say it was an extremely dark and difficult time for me and isn't something I really want to delve into as involves a lot of difficult emotions. Fertility preservation is something a lot of people undergo before starting chemotherapy, and a lot of other people for so many different reasons. It is great that it is offered by the NHS for free for those of us undergoing cancer treatment, as I am aware how expensive and difficult to access this treatment can be for others. It was a difficult process, but ultimately I am so grateful I could access it for free.

I did have some fun in February, in the form of a trip to Ibiza! Not what you think, though. We were there celebrating my good friend, Sukhy's, 40th birthday. Sukhy is one of my closest friends, who also happens to have cancer. She is living with Stage 4 breast cancer and is just one of the best people I am so lucky to call a friend. Sukhy invited a bunch of her besties to Ibiza for a few days. We stayed in a gorgeous huge Villa and just enjoyed being silly together in a beautiful part of the world. I was very glad to get this break as I knew the next few months were going to be full-on, and I was unsure when I'd next get to get away...

I will leave this one here for now, having covered more months than I actually said I would, and will move onto the clinical trial next... please do subscribe/follow along to get to read my next blog and my latest life updates!

IMPORTANT SIDE NOTE - I am currently fundraising for Sarcoma UK, the national charity for people and their families dealing with a sarcoma diagnosis. I am swimming 15km in 31 days trying to raise £1000. Link to donate below.

Why 15km?

15 people a day are diagnosed with sarcoma in the UK.

It is an uncommon cancer, but not as rare as you may think!

If you have any signs or symptoms of sarcoma, please please please see your GP:

• a lump that is getting bigger

• pain, swelling or tenderness in a bone

Support/Links:

• More info on the Clinical Trial: https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-sunitinib-and-nivolumab-for-sarcoma-immunosarc2-0

  
  

• What is ASPS? https://sarcoma.org.uk/about-sarcoma/what-is-sarcoma/types-of-sarcoma/alveolar-soft-part-sarcoma/

  
  

• Sarcoma UK Support Line: https://sarcoma.org.uk/support/sarcoma-uk-support-line/

  
  

• Sukhy! Follow her! She's ace. https://www.instagram.com/sukhneil_bahia/

  
  

• SWIMMING CHALLENGE - Please donate to the cause if you can and sponsor my 15km swim. Trust me, it is hard to swim that far when cancer treatment is exhausting you!

Thanks for reading, and until next time,

M x