Sometimes courage is the quiet voice at the end of the day saying ‘I will try again tomorrow’

Hallo iedereen

img_5097-kopieBijna even snel als die bijkomende medicatie aan de oppervlakte kwam drijven, is deze weer gezonken tot diep op de zeebodem. Na een kleine week kreeg ik telefoon dat het in combinatie met m’n kankermedicatie niet mag genomen worden. Teveel kans op zware hartstoornissen, risico dat de kankermedicatie z’n werking niet meer kan doen en zo werden er nog wel wat argumenten in de strijd gegooid. Nochtans voelde ik in die enkele dagen wel een verschil in die zware sluier van hoofdpijn en vermoeidheid. Daardoor werd alles letterlijk en figuurlijk wat lichter en dat kon ik wel pruimen! Toegegeven, m’n zenuw vuringen waren heviger en ik moet zeggen dat m’n hartkloppingen ook wel frequenter aanwezig waren. Maar dat kon me eerlijk gezegd weinig schelen omdat het best wel een verademing was enkele nevenwerkingen die ik al zo goed als 3,5 jaar non-stop heb, verminderd te weten. Bij het stopzetten van die bijkomende medicatie duurde het helaas niet lang voor dit weer naar af was. Ik moet toegeven dat ik het eventjes weer gehad had. Dan raapt een mens z’n moed bijeen en dan wordt deze meteen weer verbrijzeld. Anderzijds gaf het me de stimulans om juist nu door te zetten en andere oplossingen te zoeken. Het is beïnvloedbaar, dus moeten we blijven zoeken naar hetgene wat mag en kan. Een leven lang (hoe lang of kort dan ook) graad 2-3 nevenwerkingen is niet houdbaar, waren de woorden van één van de specialisten wereldwijd rond mijn soort kanker en behandelingen. Ook zij zijn mee aan het zoeken om hun patiënten iets meer comfort te geven en ik hoop dat die ‘trend’ ook naar België kan doorgetrokken worden.

Zo werd december echt een doktersmaandje, maar dan wel eentje waardoor er hopelijk binnenkort weer iets nieuws kan geprobeerd1380310_773577892714958_3012906978802270446_n worden om me beter te voelen! Volgende week wordt dit afgesloten met m’n controle en bespreking in UZ Leuven en ik hoop echt dat samen met het nieuwe jaar, er ook een nieuw behandelplan/aanpassing van het plan kan opgestart worden. Uiteraard is dit alles afhankelijk van hoe m’n kankerwaarden zullen staan, dus laat ons in eerste instantie hopen dat dit op z’n minst stabiel is.

Na het stopzetten van de bijkomende medicatie kwamen m’n nevenwerkingen weer in een storm terecht. Enkele hevige dagen heb ik dus achter de rug en de betere laten nog even op zich wachten. Ook op vlak van lopen ben ik er in geslaagd m’n kuit volledig te laten verkrampen, met een lichte ontsteking aan m’n scheenbeenvlies tot gevolg. Het feit dat ik die dag 3 kg vocht vasthield en m’n kuiten effectief aanvoelden (en er ook zo uit zagen) alsof ze gingen ontploffen, zal er wel niet goed aan gedaan hebben. Maar dit is weer onder controle en zo kan ik m’n duurloopjes blijven verder zetten. Overigens een van de weinige dingen die m’n hoofdpijn ietsje beter maken soms. Het uitwaaien in de wind en de koude op m’n hoofd voelen. Een reden te meer om m’n loopschoenen dagelijks aan te trekken dus;)

images-2De feestdagen komen er weer aan en de melancholische en emotionele liedjes swingen ondertussen alle radio boxen uit. Eerlijk gezegd, ondanks het feit dat ik wel te vinden ben voor gezelligheid en warmte, ben ik niet zo’n fan van die toestanden sinds m’n ziekte. Het zet me soms teveel aan het denken, ik voel me er zo week als ‘spong bob’ door vanbinnen en dat kan ik niet hebben, zeker niet wanneer ik m’n moed weer op scherp staan heb om door te bijten om voor oplossingen te gaan.

Dat laat echter niet uit, dat ik iedereen hele fijne, gezellige en warme Kerstdagen toewens, waarin jullie leuke momenten kunnen creëren en meemaken om voor altijd te koesteren!

Liefs en tot binnenkort!

THIRD KIND OF ORAL CANCER MEDICATION 2014-2015

img_4480-kopieFor a while, I even started thinking about a bone marrow donor and transplantation. I talked it through with my doctor, but he said: Lindsey, I think you underestimate the impact of such a transplantation. I felt myself transforming in a frozen Penguin at that point. I what? Underestimate it? I couldn’t say a word at all. But that quote, was further away from the truth, then the distance between the Earth and the sun.

Let me be honest, I really don’t think that I underestimate it. On the contrary. Choosing for a bone marrow transplantation would be out of despair. It wouldn’t be an easy choice. I wouldn’t chose it for the easy way out. I know the stories about transplantations. I know people can die from it. Or afterwards. Or having such a bad repulsion, whereby the life quality gets very low, and all other kind of reactions on it.

But I also know the stories about those who survive. Those who do get cured. Those who are finally hear the words: The cancer is gone! Those who finally feel: I’m feeling good again. Not that it is a black or white situation. And I know, everyone, even with the same type of cancer, or the same treatment, is reacting his own way. You can’t compare any situation! But still, hearing: You’re cured. No more treatment. That would mean everything to me!

137-lindsey-de-grandeAt this point, I don’t remember how it is, feeling healthy. Not having pain. Not being tired. And I refuse that this is it, till the end of times. I know there is a solution somewhere out their. For me. For everyone. And I will keep searching for it. I will keep looking for it! And I will keep doing the best I can in the meanwhile, hoping that day will come soon!

So no, choosing a transplantation would be a rational, but radical and difficult choose. Knowing that there would come an end on how I’m feeling now. Like 50 percent of my capacity before I got sick in my good days, like 25 percent in my bad days. Knowing that a transplantation could mean less then 25 percent, or even zero. Being dead. And I don’t want that, non of us do! Everyone wants to live! But I would do it, hoping and going for the full 100 percent. To be alive again! Living! Not surviving! When I thought about my beloved ones, I definitely wouldn’t choose for a transplantation. Rather being with them at 25 or 50 percent, as long as it takes, then not begin with them. But thinking about myself, and myself only. It would have been difficult.

It’s not that I’d make my choice. But I decided to test my sister if she was compatible with me. Unfortunately, she wasn’t. And with that, the thought of a transplantation, faded away. Not gone, but more on the background. I know there is a database with possible donors. But that’s for when it’s really necessary. I wouldn’t bear the thought I have a double match with someone who’s needing it more then I do, but was too late, because I was ‘first’. And I’m also scared that the chances on a rejection of the donor, is much bigger when it isn’t family.

foto-blogSo we went to the only real option after feeling that my body was so full of the medication, and that was switching to an other type. My first two types, worked a bit the same way. Only the second was much stronger then the first. The one I was starting to take now, gets used with bowel cancer and other types too, sometimes. The chances the medication would burden my heart or/and lungs were bigger, so running would be on a low level until further notice.

How I felt, weighed so heavily, that feeling better, was the only important thing for me. Even more important then running on the international level again. Although the tears competed in the socket of my eyes to flood my face, I didn’t shed a tear. My survival mode was again at the highest level, looking foreword and hoping for the best. I always feel like it’s my only option, trying to be strong and moving forward, although also bad days are part of the game.

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 1392056_10204737347303896_7086489356632758359_nrelieve. 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.

10968345_10205859446311278_7948659042445954997_nWith 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 when my 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