IT IS MY BIRTHDAYYYY MONTH!!! I LOVE birthdays, and after everything I have been
through these last few months, I can’t WAIT to have some fun and do something a bit more normal. I’m feeling so well at the moment, I’ve been off of treatment for four weeks and getting stronger by the day. Anyone who follows me on Instagram (@oopsydaaisy) or snapchat (dasyelis) will see that I have been enjoying myself lately and spending time doing more ‘normal’ things.
But although I am feeling better, I have been reminded recently, that I am not invincible. None of us are. I really struggle to do the most basic things and I get really tired if I’m on my feet for more than 10 minutes. Whilst I am receiving the best care and all the medical interventions possible, if my body doesn’t respond to what it’s receiving, there’s not much else that can be done. It’s incredibly heartening to see so many people on the same ward as me complete their treatment and receive the ‘all clear.’ But whilst we celebrate for these people, there have also been people I have met who have since lost their battle, as their bodies have just stopped responding to chemotherapy. This was a painful reminder of how fortunate I have been to have a body which has fought so strongly against such an aggressive disease. I haven’t done anything differently to those who have lost their battle, it doesn’t make them weak, nor does it make me ‘strong’ it is simply down to how your body responds, as well as what type of cancer you have etc.
Without getting depressing, I’m going to get real for a moment! I have spent endless nights lying in bed, googling my chances, trying to ask the internet if I’m going to die or how I’m going to feel tomorrow morning etc. Basically a million questions that google cannot answer. I knew I wouldn’t find the answers but I would scroll for hours and hours finding myself 20 pages deep into a recent study that was naff all to do with my cancer. My prognosis isn’t good, I’ve always known that but I’ve never really spoken about it because I like to keep positive, and make sure everyone is positive with me. But if you googled my exact condition, the outcome is nat good. I try not to believe too much of it, because we’ve all googled our symptoms and diagnosed ourselves with cancer so I know the internet is probably the worst place to seek out answers. But it is SO frustrating not knowing what your outcome is and if you are going to be the lucky statistic or the common statistic. It was already a one in a million chance that I was ever going to get this cancer, so why can’t I defy the odds of beating this thing? For Rhabdomyosarcoma (RMS) I sit in the high-risk because it’s spread around the body, and my chances of making it to 5 years are a drab 26%. But I can’t help but ignore this, nobody knows what’s going to happen to me, or to anyone! I could walk out the door tomorrow and be hit by a bus, I cannot dwell on the fact I might not live forever like I had always planned. It really has taught me to live in the moment and not think too far ahead, I appreciate every single day I have and that in itself is something that makes me happy every day. Don’t get me wrong the small things do still matter, and everyone’s problems are significant at the time, no matter how small, but when looking at the bigger picture I can’t help but hope everyone is happy and lives a life they love, because life is too short to be unhappy.
It’s a strange thing, this cancer journey. I show up for my chemo, I deal with the side effects, recover and repeat. But at no point have I been aware of what is actually happening in my own body. After finishing my ninth cycle in February, I then had two scans three weeks later. These will tell my consultant whether or not I am getting better and if the chemo has done its job. I first had a CT scan of my chest, spine and pelvis. The spine was where most of the cancer is, so my consultant wanted to see if the cancer had reduced in this area, and then used this to determine what might be happening in the rest of my body. I then had an MRI on the whole of my spine, to show different details through the imaging of what was going on in my spine. I was a bit concerned that she wasn’t going to scan me from head to toe (seeing as that’s where the cancer is), but she was confident that whatever the chemo has done to the cancer in my spine, it will have also done everywhere else. You have to trust these people; they are unbelievably clever. I was really lucky to actually have my appointment for the results the day after my MRI scan, so I didn’t have enough time to panic and get anxious about the outcome.
But with my leg pain getting worse over the last couple of weeks, I couldn’t help but lay
in bed thinking it felt like my leg was riddled with cancer. I don’t even know what that feels like, because I was riddled before and had no idea, but these pains were identical to the ones I had before I was diagnosed. I was convinced that one week without chemo had caused the cancer to wildly spread out of control. So by the time we were on our way up to Leicester for my appointment, I had convinced myself that it was going to be bad news. I just knew that it was still going to be a long road, and I would be miles away from the all clear I have been hoping for. To be fair, my family and I had already been told that its highly likely I will receive further treatment, and they probably won’t ever use the term ‘all clear’ as they will never be that sure it has all gone.
Anyway, we went to a different building to meet with my consultant, and we didn’t have to wait for very long. She came and called my name, and lead us down a long corridor to her office, which we had never even been in before as she would usually visit me in my bed on the ward. She asked me how I was and I mentioned the leg pains and that I had a bit of an achy back, but apart from that I was doing okay. Straightaway, she told us she was pleased with my scans and had seen a significant reduction in the cancer. I’m so glad she came straight out with it, I didn’t expect it and had built this moment up so much, that it was almost an anti-climax! My mum started crying with relief and my dad and I both asked what this even meant, because although she was pleased and smiling, she never said it was all gone and she definitely hadn’t used the ‘all-clear.’
After a gazillion questions were answered, the consultant gave us some information leaflets about the next treatment I will be having. So, first up is surgery. The cancer was actually holding my spine together, so after it had been removed by the chemo my spine has collapsed in several places. I don’t know too much about this surgery as I’m still waiting for my appointment with the spine surgeon, who will tell me more, but apparently they inject ‘cement’ into the gaps between the bones to hold it back up. It sounds horrible, but to make things worse it’s done under local anaesthetic so I will be AWAKE. (EUGHHHHHH). But I will feed back how it goes after it has happened! How bad can it be, I’ve already been through the shit of it now haven’t I?
After the surgery, I will start a different type of chemo. This time it’s two drugs instead of four – one will be oral and taken daily, the other will be a weekly injection in hospital. My consultant hasn’t said how long I will receive this treatment, but she is starting it for a minimum of six months, but can be up to a year. This is basically to get rid of anything that is still lingering and to try and keep it at bay if it was to come back in the next few months. I’m super happy with this outcome, I know I’m still not out of the woods and still have a long way to go, but it reassures me to still be receiving treatment and regular scans.
She doesn’t think my hair or eyebrows will grow back for the next year or so whilst I’m on this new chemo, so that’s a bit gutting. But I have recently ordered a new wig so hopefully that will make up for it! Now that I have more time feeling well, I have started to work on a couple of little collaborations. I won’t share what they are just yet because there’s still lots to be confirmed! But I may end up sharing these with a few VLOGS soon, so lookout for a YouTube channel. I will also be returning to work (from home) and taking appointments for beauty treatments in May, so this is super exciting, being able to catch up with actual PEOPLE and getting back into a routine. On the 20th April, there is a charity night to raise money for teenage cancer trust. This night is in aid of the walk my mum’s colleagues are partaking in, and we have sold nearly 200 tickets! If you aren’t coming but would like to contribute to their funds, I will link the page at the end for your donations. This year we are already planning a ‘Girls Day’ in summer, and a Sarcoma Ball which I’m hoping lots of people will attend and enjoy an evening raising money to research into Sarcoma and change these statistics!
So in short, *most* of the cancer has gone, I will be having surgery to fix my collapsed spine and I am now starting another six months of chemo which is hopefully less intense, meaning I won’t be staying in hospital, just going for the day. I will still experience some side effects, such as sickness and tiredness etc but they shouldn’t be as bad. This really is the best news we could have received at this point of the journey, I still have a long way to go, but I am ready to take it head on and continue the fight.
The link for donations is here – I know so many of you have already helped us reach nearly £6,000 on JustGiving.com/daisyellis so thank you.
daisy x x