What is maintenance chemotherapy?

On my social media I get a lot of queries and questions about my maintenance chemotherapy, as best as I try and explain it, it is still rather confusing, so I thought I would make a blog post all about it!

After completing 9 rounds of intensive chemotherapy and 28 sessions of radiotherapy, I started a year long maintenance chemotherapy regime. This consists of 12 cycles of chemotherapy: there are 4 weeks in each cycle, and I get chemotherapy via my port for 3 weeks of that cycle then a week off. This chemotherapy is called Vinorelbine. Also each morning I have to take an oral chemotherapy called Cyclophosphamide, unfortunately for me because my dosage doesn't come in tablets I have to have it in liquid - it tastes vile!!!!

My maintenance chemotherapy is going extremely well, I am feeling a lot better now and my hair is growing back. The start of maintenance chemotherapy had a lot of bumps in the road. Firstly, the radiotherapy was partly targeted at the bottom of my spine which is the part of the spine that replenishes blood, due to the radiotherapy that got damaged meaning my bloods aren't able to recover very well without support. One of the things that excited me about maintenance chemo was that I would no longer need GCSF injections (Injections that increase neutrophil count) - so I thought. After my first dose of maintenance chemotherapy I became neutropenic and my platelets dropped. This mean't I had to stop oral chemotherapy, I was off of it for 3 weeks because the doctors were waiting for my counts to rise but nothing happened. So I was forced back onto GCSF injections, I have them on a Monday-Wednesday-Friday routine.
Secondly, I am supposed to be on 100% dose of Vinorelbine but due to my platelet count dropping I am currently receiving 66% Vinorelbine. We have talked about increasing the dose to 80% but my consultant does not think it is a good idea. Of course this isn't the ideal situation as I would rather be receiving my maximum dose, but I want my body to stay well so it is for the best.

Not all Rhabdomyosarcoma patients receive maintenance chemotherapy. In England, you receive maintenance chemotherapy if you have stage 4 Rhabdomyosarcoma. This is because stage 4 rhabdomyosarcoma has a high relapse-rate. The maintenance chemotherapy is less harsh doses of chemotherapy that makes sure all the cancer cells that scans can't show are gone. Even though it is annoying that the maintenance chemotherapy adds nearly an extra year to your protocol, it is very important for stage 4 rhabdomyosarcoma patients because it helps keep the cancer away.

I am currently on my 9th out of 12 cycles of maintenance chemotherapy, I can definitely say that all of this treatment has taken a battering to my body. Most days I feel achy and tired, it is gradually getting worse as the cycles go on. Back in September I was able to do 2 full days at school pretty easily and not feel too bad. However, now I feel exhausted after 2 full days at school, all I can do is lay in bed. School is becoming more demanding so it will be hard to keep up with school and my fatigue, but I am determined to do as much as I can and fight through the aches and pains.

I hope this blog post has made you understand what maintenance chemotherapy is. If you are going through it or will be soon then stay strong and stay determined!

Thank you for reading!

Love Ellie xxx

How to cope with your cancer diagnosis

CANCER. I couldn't believe it. The shock was unreal. Why me? How could this happen to me? Why did this happen to me? Am I going to die? What will I look like bald? How are my family going to deal with this? Getting you cancer diagnosis is the scariest thing, because you really don't know what the future will hold, I sure didn't. When I got diagnosed with cancer I had many ways in which I coped with it, I want to give you my advice and tips.

All these possible outcomes and endless amount of questions fill your mind uncontrollably, it is hard to get away from them and it can make you feel very stressed. Right from the beginning I realised that there was no benefit in trying to think of what the future would hold for me, it only made me even more paranoid that I may not survive this fight. I stand by the words of my mum, she always told me "Live for today, don't worry about tomorrow.". This helped me a lot because it made me focus on the present and live everyday to the full.

Let people be there for you. Don't feel like you cancer diagnosis should be kept as a secret, it will only make it a bigger burden for you. Tell your loved ones and close friends, I am sure they will help you through this crazy journey and give you the support you need. One of the things I used to enjoy most during my intensive treatment was getting visitors, sitting around the house all day unable to go outside was extremely boring, so getting visitors was fun and would make me feel less lonely. During your cancer treatment you will more than likely not be able to go to school/work, so things get can really lonely sometimes, but having good company will cheer you up.

Positivity is the key! Positivity is hard to find when you possibly just got the worst news of your life, but feeling depressed will do you more harm than good. Having a positive mind helped me a lot, because it made me believe in myself and I was ready to fight my cancer no matter what. To feel more positive it is beneficial to focus on your family and friends, my family and friends helped me keep positive when I was feeling low and they were always there for me. Keep positive about your treatment, it may suck and make you feel bad, but just think of each chemotherapy/radiotherapy as another blow at the crappy cancer inside of you, I used to say to myself during chemo "Take that cancer!!!".

One of the best things that helped me cope with my cancer diagnosis was believing in myself. After I got my first chemo, which was a horrendous experience with a lot of complications, I should have felt depressed, but I just got on with it and I kind of realised that this was my life for now and I had to stay strong no matter what. When I got my head shaved and I looked in the mirror for the first time I didn't cry, I loved it, and I thought to myself "I look beautiful and I am ready to fight this!". Believing in yourself is one of the strongest mindsets to have, cancer is tough and it will be hard to stay strong all of the time, but as long as you remember that you are strong and brave you will be a strong cancer warrior and you will fight this cancer no matter what!

Cancer does not mean that this is the end. Think of cancer as the start of something new, you may not want it to happen, but fighting for your life will be a new chapter in your life. Before I got cancer I was your typical sporty teenager who loved school, but I had to stop all of that to fight for my life, and I actually call my fight 'My gap year', so I can put a positive spin on missing most of the school year. Getting cancer was a new start for me because it was a start of a new Ellie, I am still the old Ellie, but I have witnessed so many horrible things meaning that I can't be the same Ellie as I was before. I have realised the importance of life, what it takes to stay strong even when you feel like giving up, and I have been immersed into a new world which no person should ever have to go through. You are never the same after all of that.

I hope this blogpost has helped you cope with your cancer diagnosis. For those of you who have newly been diagnosed or are currently fighting, I wish you all the best and remember to stay strong.

Love Ellie xxx