My chemoday that ended up in the sky

Yes they don’t have to be scary😉. I got already 9 chemo’s, 3more to go over 4 weeks. It’s getting harder but also i start seeing the end.

Yesterday, i had many treatments in one day. Chemotherapie, anti-hormone therapie and immunotherapie, that means spending many hours in the hospital.

I am very lucky to have met my budy, she is a girl that is voluntury for the cancerorganisation in Belgium. Sinds i am not good in exepting help or asking help, i gived it a try to get myself a ‘budy’. And it is great that i did because that is how i met here. Now she always joins me to hospital, she is really an amazing person.

When we arrived, they put the infuse and take blood like always to see if i have enough white bloodcells to get the chemo. At the time they exame the blood they already start giving me the 2 other treatments trough the infuse. It was a busy chemoday this time, or maybe it was like every time but i just got more and more tired so it feels more busy. I got visit from the social worker of the department to see how i was doing, i had some questions about getting treatment out of Europe, for my further future also we talked about my next operation that i will get in September. Than the nurologe came to check how i was doing, this happens every time. This time my docter was on holliday so it was another one and to be honest i was ok with this for one time because he was a cute one 😁. They always ask if i have complains, infact i should start writing them down because when they ask i never know anymore the problems i had, because i never focus to much on them. After that a woman past in the room to chat a little, she is a voluntury to from the cancerorganisation and go visit the people from time to time in the room, she is very sweet to. Continue reading “My chemoday that ended up in the sky”

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Some chemothings

I got already 8 times of the 12 chemosessions. 4 more to go in 5 weeks. I really feel the difference between the start and now. The things i have for the moment:

Normally in my week without chemo, i get energy again at the end of that week. Now it is sunday, end of the week, i went to the beach with my cousin to relax. It was nice! But i got so tired again. Always when i am relaxing it is hard to get up again to go. I am back home now, ko, with another bleeding nose.

Also yesterday i planted some gras on my terras and because my skin is so sensitive and dry now, after my arms where totaly scratched

2 weeks ago i got chemo but it was hard to go into the vain with the infuse, my vains are getting hard,my arm is still blue

And the tingeling feeling in my leggs is also back, like some worms are inside 😃.

Butt a nice thing: my hair is growing already 😁

Now, monday my body feels so tiredddd, i want to go outside but i can’t. Everything i do is hard. When i shower it even ask a lot of effort to go out again and dry myself. I past the day doing nothing because everything was to much today😬. I hope this don’t get worser to the end of chemo. I asked my doctor if i can go travel 2 weeks out of Europe, after i finish my chemo. Because i have to recover a few weeks before i do another operation. She said yes, i am very happy to hear that, i only don’t know sure if i will enjoy that much because i guess i will be still recovering and reloading. And if it will feel like now everything i will do will be much harder than it should. But we will see on that moment, at least i will try, i feel very lucky anyway to go explore a new place😁.

Staying positive against tiredness

Before i used a lot ‘couchsurfing’ , it is a bit like air benb but you don’t pay because it is more about meeting people and helping each other out. You let people,mostly travelling people, stay in your house and when you travel you can put your trip on the app and people can invite you to stay at their house, or you can ask, i love it! For the moment i don’t let people stay at my house, because if i let them come, i like to give thim a lot of my time, i like to show the people around and have a lot of interaction but i don’t have always energy for that now. A few days ago i wrote someone that i could met him and spend some time but that i dont’t host people now. Continue reading “Staying positive against tiredness”

Week off

This week is my week without chemo. Time to recover😁. Because travelling helps me to keep positive and gives in a kind of way positive energy to my mind, my friend and i plannend a short trip to France. To a lake called lac d’ annecy. It is for 3 days, short, but i can’t longer😬. After doing some other of this short trips during chemo, i know that i am to energetic and enthusiastic when i travel and that takes a lot of energy so i better don’t go for to long.It was like with my other trips, i can’t keep my energy and save it for all off the days. I gived everything the first two days and the last one i was exhausted. But it was worth it. It is an amazing place! We rented bicycles, electrical ones, to go around the lake.I can enjoy so much of things like this! The landscapes, feeling the wind, the sun, smelling nature, picnic,..and all of this with great company! But now i feel like always when i want to enjoy, i need to give something back, for example if i do a lot, after i need twice as much rest. But i can’t enjoy, sleeping next to the lake when i know there is so much to see. Even i already feel limited now, we took an electrical bike to make it less hard, there were hiking places but i can’t do hiking now, no paragliding. But that is ok i can do all of this later. I was also thinking sometimes, it doesn’t has to be always easy for my friend because i know she feels a bit worried about me but she also does not always want to ask me if I am ok. But we talked about that and that i would tell when it is to much, she was a great travelbudy for that 😊. That is also on of the reasons why i write the blog, because people are sometimes careful with what to say or they don’t know how to be with me, so if i write how i experience this ,maybe it will help other people also in one way, to understand this more.I really enjoyed but at the end it started, and then i remember again i have cancer. My noose is bleeding sometimes and hurts inside, my legs start having this strange feeling, little wounds in my mouth, nails always breaking and this time also became purple, they burst that far that it become very painful now, like like i feel my haertbeat in them😬! my energy just gone tired, big headach, my vains become harder, last week when they putted the infus my vain bursted so they had to retry, now my arm is purple and blue. It’s ok to be tired in a place like that, we just relaxed around the lake, but the thing is, i try to live normal and try to ignore i am sick, on moments like that it don’t work to ignore. Than i can feel a bit frustrated inside because i just want to live my life, healthy without limits. I have no idea if i will have this life ever back. But i will try because that is my life, excited, adventurous. I also always get to see back, on my computer , phone, pictures that reminding me on beautiful moments in my life and on how i was and look liked before and i miss it so much when i see the pics. After beiing in the hospital with the eatingdissorder i learned to be happy, and i realy was! I was enjoying my life so much, they say sometimes, something bad like a sickniss has to happen before you stop beiing busy and realise you don’t enjoy enough. That you look different at things. I feel like i already had that part before, i realised that and changed a lot, and after i was busy beiing happy i guess 🤔…so sometimes i am thinking and i dont understand what more i have to learn. I will need to learn to live with a sickness forever, even, next to the treatments i will get every 3 weeks, i will maybe(hopefully) be ok, but it will be always there somewhere and i will be always under control to prevent tumors and that is something hard for me to accept.another great day in Ghent beforecouchsurfing,i hosted people travelling in my home, met a lot of new friends❤️ To go home from the lake in Annecy we had a flight from Switserland. We stayed in an airbnb in Genève 1 night, to fly b early morning, i talked with the boy from the house, he told me he loved how i look at it ‘having cancer’ and that it is great i keep doing this things, when i thought about that, i thing it is true, i feel lucky that i have this attitude, i think the travelling helped me a lot with that, don’t complain about things, changing plans easily, live from day to day, …We just got home, from waking up at 4 o clock to take the plane. I was wearing a scarf, at the security of the airport they asked me if i could go in a cabinet to take of the scarf to do a security check, i think the woman did not expect the reason i wear a scarf is because i am sick,i found she was quiet formal and after i removed, she looked different and touched my shoulder to say very sweet, have a good flight. Maybe it is my imagination but i think she did not expect me to have no hair anymore. That is why i mostly wear the hair, i don’t want people to feel pity for me or see me different because i am sick. This is a bit double, because on the other side, sometimes it is nice to feel that other people understand ,it is not always easy. Maybe i don’t expect pity, more understanding or something like that.back home, tired but happy, ready to hang in my couch again for a while, with more, new amazing memories❤️

Chemodays don’t have to be bad days.

Yesterday i had my chemoday. I was lucky that my sweet buddy brought me and picked me up again.

( i also asked here to be part of a little bday movie i made for a friend, this is a picture, part of the movie)

When i arrived they had to put the infuus and take blood to see if my bloodlevels are good. They were, so then they orderd the chemoproduct. This time i didn’t need the other 2 infuses ,only chemotherapie, the other ones i will need to get forever, i got last week together with chemotherapie. But i get them only every 3 weeks.

When they try to put the infuse, i got a bursted vain. My vains become a bit hard after getting so much chemo. Most people get a port-a-cath, it is a port they place under the skin, in an operation, mostly they put this in the chest, this is connected with a tube where they give the chemo in,but for me, we tried to donthe treatment without this. It is working but it is getting a bit more paintfull to put needles, they had to take the infuse out and trie again on my other arm. This time it was ok, i was happy for that because a burst vain can be paintfull. Probably it will be blue tomorrow. But it is not really a big deal.Luckely the sweet nurses makes me forget very fast, i just had a bit pain 😁.

I am very lucky with the nurses in the hospital i go, they are the so sweet and take good care of me. They became part of my weekly routine 😊. (i also asked them to be part of the little bday movie i was making, and this pics are also part of it).

A chemoday don’t has to be a sad day. The night before and in the morning i need to take some medication ‘medrol’. It is with cortisone, this sucks, they have a terrible taste and makes me sleep bad, also i swet a lot and i think they make me have mood changes. The good thing is i think they give this boost that give me energy untill 2 days after chemo. So that makes, i have energy, and i love that 😁.

I watched some serie on netflix while i got chemo and relaxed a little. At the moment they give the chemo i don’t feel anything, maybe only a strange taste in my mouth.

After i went back to Ghent, i had a great afternoon, i went drinking a coffee with my cousine and aunt and enjoyed the sun while walking back home.

After chemo i can never go home and relax. I don’t know if it is the boost, that makes me beeing busy or the thoughts that i just got this poison in my body. Probably a combination.

My oncologe always pass in my room while i am getting chemo to check. She told me i wil have some weeks to recover in august, after my last chemo and my operation. I was happy to hear that but at the same time i just want everything to happen in one time, so it’s finished and i can go. Because when i hear ‘ some weeks off’ i think immidiatly about going to travel. But i know that time, i can not travel like i want. Just go far away, in some stuning nature, hiking! Because maybe i wil be tired and my body wil need to recover so i can’t just take the bus and go take longue busrides, sleep anywhere, and see what happens. Probably i wil need to plan a bit and take it easy. But that is also ok for now 😁.

She also told me it’s time for a heartscan end of july. Because i wil get this therapies every 3 weeks and also i need to do a heartscan every 3 months.

We are wednesday now, i know i am lucky i can go enjoy this beautiful day, but also i start missing a bit ‘doing things’ like i would like to go work a little, or voluntury in prisson. But i am scared if i start that, and i make appointmente with prisoners, they will maybe look forward to this but at this point in my life i can not promise things. Maybe i wil feel bad or very tired and i wil need to cancel, like that i can not be a good employee or volunteer. I need to be patient …

This morning i was thinking about something i learned in some 10 days silent meditation i tried in Thailand in a temple. The master monk told me: you have to suffer before finding hapiness. I left after 3 days because i was thinking, i don’t need to suffer to be happy! But staying in that temple was not my suffering, i think a lot about that now, maybe this is my moment of ‘suffering’ to find my hapiness🤔.(when i still had my phone, before starting mediation, because when it started, no phone, no talking, writing where alowed, also always dressed up in white,…)

I have this things i really want to do in my life, i also already did a lot of them, they are all big things. But while i was doing this things that i had in this list in my head, some other changed.

Like i was travelling and looking where i wanted to start a hostel maybe. But while travelling i slept in hostels, met owners… and i was not sure anymore if i was ready for that because than you have something to take care off. Ideas change, plans change dreams, and that is ok. But it also confuse me sometimes and makes me feel like i don’t really know what i want. At moments like that i stop thinking and i go enjoy the moment 😉. Like i will do now, now am feel ok😁.

 

Chemobrain

This morning i woke up because my nose started bleeding again because of chemo.

It’s not a big deal, but just another sign, chemo is doing many things with your body and it is working 😉.

Also , they say chemo makes holes in your brain.

I am already a person who is confused a lot and forget things, but now i feel that i am terrible with this. I always have to look longtime to find things back that i just putted away, i lose so much, even i had it in my hands 2 sec before. I have to write something down fast, if i have to remember. I am getting a chemobrain i guess.

For the moment i also have a lot of little wounds, they look like burns. Also not a big deal but i tell this,to let know that chemo makes the skin dry, and sensitive. I think it is important to take care a bit more of your body while you are having treatment.

Also your nails are like paper. You get broken nails, they gives me a product to protect a bit against this but i feel it is not really helping for me. Or maybe i am a bit to lazy to put it a lot 😃. But i should because it can be painful to have chipped nails.

All this things are because chemo kills the bad cells in your body but it don’t know witch one are the bad, so also good ones die. That is why it makes your immune system more weak and you get more sensitive to catch a cold for example, if somebody around you has it.

Another thing i am feeling for the moments is, the strange feeling in my hands and feet , like they tingle. Or, i also discovered i even lost some feeling in my feet! Somebody was giving me a footmassage the other day, normally i can’t handle because it tickles, now i even don’t feel somebody touch my feets 😬.

I don’t feel this things to much. I noticed that i feel this things more on moments like this when i am hanging in my couch.(with in the back my beautiful painting another amazing person made for me❤️)

But when i am good, enjoy moments or i am busy, i don’t pay attention and i ignore. So i think it is good to keep doing things , enjoying, and have some movement if you have energy or have other distraction.

Now i just hang here in my sofa, i was looking some of the things people gived to me , like candles, letters ,pics. It shows again how nice people are and makes me happy, also motivates me😁

Being sick makes me appreciate more

Yesterday i was having this amazing day! I felt normal, good, healty😃, i was with a friend enjoying summer.

Doing a picnic, taking a nap next to the lake, listening to the birds, making art with green😃, doing whatever, enjoying 😄. Just sharing good moments and having good conversations.

When i drove home in the evening, i saw the sun going down and the sky turning pink. It is one of this things that keeps amazing me, i saw such amazing sunsets everywhere, always looking different. I felt so lucky and greatfull for the day! It reminded me also on this amazing sunset i saw in Fiji, little memories like can also put a smile on my face.

Being sick, makes you appreciate moments even more i think! Life can be so busy, we are al living the life and sometimes forgetting to stop for a minute, and breath! Be thankful for things, or to think if what we do, is realy what we want to do. But if you become sick, you need to stop. I think that is one of the good things coming out of it.

Just be thankfull that we can walk , see,.. or to have hair . When i will have back mine, i will appreciate it so much and be so happy with it 😃.

Sometimes i think, we live the life ‘like it should be’ but in fact their is no way to live life. As long as it is not against the law we can do things our own way!

I think i learned appreciating live more after getting another sickness, a few years ago, i got anorexia and i stayed in a hospital for 7months. But this is another story. I just tell this because i regret nothing in my life, even getting this. This period in my life helped me getting to know myself very well! It helped me to become more free and maybe stronger to pass this.

But to go back to today, today it is different. I woke up very tired again, ready to clean my room because i move today. I am busy drinking many coffees to help me getting energy.😃

Luckely i will get help to move ,from my brother and a good friend! Also i don’t have to much things so it will go fast and then i can go rest again. I move back to my own appartment 😁. Untill now i did co-housing, i think i will miss this experience to much, but i can always change again😉.

I sold a lot before i left Belgium, 2 years ago. And i want to keep it like that, i don’t like having to much things. It makes me feel like i am stuck here and can’t leave again when i want 😉.

In weekend i try to ignore ass much ass possible i am sick and try not to think about going to hospital again. Also about all the other things coming after chemo. But even i try not doing it, i know i have this little moments in between i do. I still can not believe they recommend me having treatments forever to keep tumors away.

Even this treatments have not to much side effects, it feels like i will need to stay under control, i don’t like control. I still think sometimes about if i will do this or leave Europe, even i should not be worry about this now because we don’t know what is coming, i just have to do this chemo now, and i don’t want to spend my time and energy thinking about the future. Because i know i miss nice moments like this.

Tired

Today was one of these days i was thinking about doing many things but i ended up doing nothing. Infact i should already know beter 😬.

My battery is a bit low😬. I had chemo on Tuesday. Mostly i still have energy untill 2 days after, than it hits me and i should not go to far.

I don’t feel that bad, only a bit of a haedach and a little stomachpain. And than just very tired, i am not someone you can keep easily in bed, especialy not when it is 30 degrees outside and sunny. But today i had to take a lazy day because my body didn’t want to come out.

It sounds maybe stupid that i don’t like this but i am not a person who take days to watch series and stay in bed sometimes. This is a new experience for me😉.

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