Lindsey D
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Hope is faith, holding out it's hand in the dark!

Lindsey D
Posted by
08 Jun 2015

This blog tells you more about my experiences with the third kind of oral cancer medication I took for my CML (Started in Juin 2015- still taking it)

After the hurricane of emotions, I started the new medication. I have to say, it wasn’t a big success either. I didn’t even reached the standard dose, and I already felt like I was sitting on a carousel the whole time. Driving wasn’t possible and I was doing a hibernation, except it was in the middle of the summer.

The doctor decided to reduce the dose, and we ended up at the lowest amount possible. I wish I could say that made me feel better, but that wasn’t.
The 3 days between the second en third type of medication, ‘’the non-treatment period’’ – were a relieve. I felt better! And that after more then 3 years! It gave me a lot of hope: It’s possible, feeling better again! And recognizing it! I still had headache, but it wasn’t longer a bag of 25 kilos potatoes on my head, hanging around my body, no. It rather was a bag of 10 kilos. And believe me, those 15 kilos made a difference! 3 days are a short period, but I’m thankful I had them. At the same time, it’s sometimes even harder knowing for sure, without medication, I would feel better. It’s like I’m making myself sick, by every pill I take. But knowing it’s necessary for my cancer - Which was reducing again by the third medication- So it gave me the hope to reach the complete remission this time!
The dizziness, tiredness, nerve- and muscle pain stayed. And I also got a mouth like a big mushroom with white and red polka dots. You would expected every moment a gnome, looking for a way out of my mouth. Nice for in the cartoons, less nice when having it in your mouth. The mucosa in my mouth, which before I didn’t even knew I had, ware lighting up like a disco ball. In periods, they still do.

With every medication, other side effects comes, but almost never goes. It’s incredible how many types of headache you can have! Even more incredible how non of the painkillers do something about it. I admit, I hate trying them out. I only tried a few. Sometimes, because I don’t want to load my body with more medication. Sometimes because I’m afraid they won’t help, while now I’m often thinking: it’s okay Lindsey, when it is too much, you can take painkillers. And sometimes because I think they will help. And I won’t be able the function without it anymore, I would become addicted. Maybe the last reason, is the most dominant one, not trying the painkillers a lot. Or maybe because I have the feeling I can do something about my cancer by gnawing through the pain, gnawing through the side effects. The only time when I have the feeling I’m ‘fighting’ it. Because taking pills and feeling sick, is even more passive for me, then a sleeping sloth.

With every option I’ve tried, with every disappointment realizing it didn’t worked out, I also realize the solution is getting closer. So I keep collecting my courage, and when I’m out of energy, my beloved ones are doing it for me. They really are my heroes and I’m so grateful I have them in my life!
So I’m pushing through, and with the energy I have, I’m still running. I keep my condition on a reasonable level, so hopefully one day, I can do intensives trainings again, I can compete again at the highest level, I can decide whenmy professional level of sports is over, not my cancer. Although it’s a tough opponent, I refuse that cancer controls my life. It’s a part of it, sometimes a big part, but there is more than that! I’m more than that! So I will keep going, trying to reach my goals, trying to realize my dreams!

I know one day, I will find my solution. I will feel better again. I will be able to say: It was all worth it! And in the meanwhile, me and my beloved ones, will do the best we can, to make the best of it!

I will keep working for a world without cancer, with better help for the patients and their beloved ones, with more prevention. A world, with more happiness and joy! A world with warm and loving people, who know what and who really matters! A world were everyone knows: hope and love are always stronger, and no matter what you’re facing, you’re never alone!

Take care and lots of love!




Lindsey thank you so much for being so open and honest about everything.

Your frustration is completely understandable and it must be so hard taking pills that you know make you poorly but are necessary to keep the leukaemia at bay. I know I found it difficult to get my head round the fact that they had to make me more sick before I could get better when I went in for my transplant.

I think it's fantastic that you're still running and am so glad that you've got the love and support of all your friends and family behind you when you're having a difficult time.