Thinking about my future

Yesterdag, Tuesday, i had my 3 Weekly immunotherapie in hospital. I am always curious what is happening at the arrivalarea of the hospital, always another organisation is standing their to give information about something.

I arrived around 12.30. Last time, 3weeks ago, i had an allergical reaction on my therapy so they had to stop it and give me cortisone instead…again. This time i got some premedication so i would not respond alergical. A protector for my stomach first, this went in my infuus for 15minutes than also a dose of cortisone in the infuus. After that an injection in my ass. They told me i could feel sleepy from this. It was more than that for me. It started working after 10 minutes, i couldn’t speak normally anymore i spoke like i was very drunk, i couldn’t watch my netflix, i didn’t see the screen and my eyes felt down, i felt strange. I couldn’t walk very wel to the toilet. I didn’t like the feeling. After the premedication I had to wait one hour to get my therapy. Normally they give the product of the therapy over 30minutes but because of the reaction last time they gived it over 1h. The time flew because i felt so strange. Around 6 i was finished. I came to the hospital by train but i could not imagine going like this on the train back i would fal asleep for sure. I was lucky my buddy saved me AGAIN❤️. She literally just came back from the airport and had to pass in Aalst. I don’t know how she managed to translate my messages because i wrote strange sentences 😃. but she picked me up, and took me to the car in a whealchair.

I didn’t like that 😃. But maybe, now i look back it was not a to bad idea as i felt so strange. When i came home i eated something and went to bed because i couldn’t keep my eyes open anyway. Today i feel like i have a biggg hangover i feel nautious and have a big headach.

I know that next time i will probably get a lower dose and feel less strange. But when you are in treatments it is like always surprises come up. I am so tired of this. I just want my freedom back. I feel like i start changing, fysical but also mentally, not being the happy positive me. I hope it comes back because i never let that happen! I don’t want to live like a depressed person. I don’t want to live just to stay a life, i lost my haert in other places around the world and i want to go pick it up, go live. I prefer having a crazy short life than a boring long one, and maybe without treatments it can be even longer than you think! I will not make descisions now as i am in the middle of more treatments(finishing chemo, recovering of operation, almost starting radio) it would be again a very impulsif decision, but after my radio i go to Mexico. I will take some time for myself and think. I can handle all of this physically, even it also do things with my body, but the mentale part is even harder for me.

When i arrived on the therapy, one of the nurses called me to give me a surprise, it was so nice of her! A nailpolish that makes the nailes also stronger. Sweet❤️.

i still feel so lucky the nurses are so nice in Aalst, this means a lot for me and helps to make things more easy. One of them sayed i had to stay a bit after treatment till i feel better. She sayed 30min, i wanted to go so i sayed i felt ok to go. Then she sayed ok 15min and a whealchair, so we made a deal 😁. It is nice they are also worried. And of course also Jolien, that is worried, was their to keep an eye on it, that i kept myself on the deal😉.

Another thing i am happy for is that they took my drain out yesterday, the wire and the bottle , were the water of my boddy goes inside after removing my lymphnodes. This was 4 weeks hanging on my body.

no wire anymore👍

It feels strange, i always have this feeling i need to take the bottle with me when i stand up, but i don’t have it anymore. I hope their will be no water anymore staying in my body without the drain, or they will put a needle in it thursdaymorning, when i go on a control in the hospital in Aalst.

In the afternoon, Thursday, i will need to go to another hospital in Ghent to do the preparations for the radiations. I will do my radiations in a different hospital because this one will be closer to my house and i will need to go every day for 33days.

the sky was beautiful after the sun went down on the way back from the hospital

This afternoon i enjoyed a walk in the wood with my sweet sister in law. I can enjoy moments like this so hard. See the reflections in the water, smell the leafs, all the colours. It makes me feel like i am livin and makes me forget about all the hospitalmoments for a bit. It feels great!

I think it has to be paintfull for my family to hear i am thinking about stop doing treatments. I feel nobody realy understand me in this, and i can imagine it is hard to understand because there are some big risks. If i just stay and follow the treatments i can stay ‘more healty’ for longer time ..maybe. So i should just follow and take what they offer me so i don’t get a tumor soon…again maybe because you never know if all works or not. And become happy here.

But this don’t works like that, i can’t force myself to be happy. I am used to follow my feelings and not to act with my head. I know if i decide to follow my feelings, that, i can never be angry on myself , that i quited treatments, whatever happens. Also i am tired of taking pills and medication, always untill 2 days after therapy i am not myself with this cortisone. My haert beats fast , i get bruises, my voice desapears a bit, i get like very happy or very down, it are maybe little things but all together they are enjoying and they make me tired. If i feel something i should always pay attention what i feel and not go for example to the dentist, first i ask this to my doctor if it is ok. It is like my body is not only from me anymore. It gets products, it goes under machines and i just have to follow it.

I even don’t know if the products will protect me or not, like i also don’t know if i will have another tumor again fast or not without the treatments.

Another option i might try first is to come back to Belgium every 3 weeks, but i need to find out first how to earn money for this, and if i keep getting this medication i don’t see myself on an airplane like that😃.

Today, Thursday, i went to the hospital in Aalst in the morning to do a control to see how my wound from the operation is doing. It is healing well. No water that stays inside so no needle. That was good.

In the afternoon i went to Ghent to the hospital to do the preparations for the radiations. I was sitting in the waiting room, in the department onco, many people looked a bit sad, or where injured because if cancer. It is still confrontating to sit their and it gives me a sad feeling. When it was my turn, i had to lay down on this machine without moving, this to take some scans to prepare for the radios. I had to lay in this position without moving, my arm in the air. That hurted after a bit because my arm is still stiff from the operation, they told me i should practice more.

After that, they tattoo some dots on your body so they can put the radiations everytime on the exactly same place. They will give radiations on my neck, under my arm, on my breast and between my breast. Next Tuesday they will connect the dots with lines that stays on your skin the whole period of the radiations. Monday i will need to go to Aalst again for a control of my arm that got operated. Tuesday ,Ghent again and Thursday my radiations are starting for 33 days. The good thing is this will takes every time only maybe 15minutes in total they told me. But anyway that means a lotttt of hospitalvisits next month, next to my therapy. I will also start the hormontherapy together with the radiations. That means i will get in the menopause to then. And on Monday the doctor in Aalst will put me another injection in my belly that i get every 4 weeks. Can’t wait to start my next week 🙄.

At the end of the preparations for the radio, i asked the doctor if i could speak with him. We went in a room and he putted his phone off, i asked his opinion about me, not being sure to continue all or not. He told me many things i already knew about my health, that my doctor in Aalst already told me, but i wanted to know next to medical side what he was thinking of this. I talk about this with many people just to listen and see what other people think.

Luckely soon, i have this trip again i can’t wait! This helps me to keep going👍😎.

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