About Neleke

Hey, I'm Nele, forty years young, soldier and a lot to do. However, life suddenly decided to guide me on another track for a period. So now I'm trying to figure out how to take this road in the most comfortable way and learn out of it.

Jippy yeay another chemo day!

Finally I can shout 4,3,2,1!! Get used to this cause I’ll write it every time I can tick one chemo treatments of the list! Only four rounds to go!

I was now expected on Wednesday to go to the hospital. Last week the doctor and I arranged it so I only have to stay one night in stead of two. Win win situation for the both of us! But since I have that bladder infection I was quite nervous wether or not I was going to receive the treatment. Also i was going to have three different chemos like I was supposed to every three weeks but my body decided differently the last two months as you all know. Also one of those three bags was the new one of which hopefully I was not going to have an allergic attack like the previous one. Quite a battle ahead of me I figured, but I was ready, until!!! Until they told me they had to put a damn bladder catheter again to cleanse my body for 12 or 18 hours. I honestly have to say that that kinda spoiled the party :-). It took some time before we knew that my blood was good to receive the treatment so the bladder execution was postponed a bit but to my great regret not cancelled. And so it began. I was relaxed, everything was under control, sweet nurses etc. But then one of them came to explain me that the alternative chemo was going to be given over a period of one hour instead of four hours as foreseen. I had been already nervous knowing that I was going to receive chemo which could possibly also give me an allergic reaction so I listened to the doctor who did the allergic tests last week very well. I told the nurse very politely that to my recollection I was on a hyper allergic schedule with preparation (pills at home), cortisone during the treatment and over a period of four hours with cleansing of 12 hours afterwards. I took her by surprise hahaha! But they are so sweet, seriously, so she went to check it again by the professor. She told me that he took that decision because, so far they had not yet encountered issues with giving this bag of chemo over an hour. Didn’t they learn anything over the last year, I wondered? :-), i told them before, Nele never comes without a surprise 🙂 Djezus!! Eventually of course I complied and luckily it all went smoothly.

I figured I was going to feel good enough as I did after the last couple of treatments but unfortunately I didn’t. They were not representative of course. I had forgotten that actually I hadn’t had a heavy treatment like this one since some time because lots of weeks had been cancelled due to my blood and allergic reactions. Man did this treatment hit me hard! Still now on the third day where I feel just a bit better, my body is empty like a bottomless bucket. I take two steps and have to rest. So that is what I do, I have no other choice. My friend Jo was here to visit me this morning and made the comparison with a marathon. Well although I never ran a marathon, I do know what physical exhaustion is and I can only say that you can’t compare it i guess. The only thing maybe, that those two things have in common is that you can never give up if you want to reach your goal. So that is what I do, I never give up. I follow the rythme of my body (although I’d wish I was in Leuven right now with my friends during this nice weather). Calmly and steadily and take care of it first. And that is ok, this is my road, and it is leading somewhere. And then I will drink this beautiful bottle of Cava Jo brought me. I enjoyed his company this morning. It matters. I will drink it, but not now, but on a very special occasion. (And not what you all think it is going to be hahaha that is a surprise for later)

Jippy yeay what a good day!

On Sunday I had a really good day. Thanks to the medication for the nerve pain and the antibiotics that seem to do their job. The night wasn’t really good as usual. I sleep two hours and have to pee and the bladder infection hurt me. But thanks to the new stent it also got a lot better and less painful now. I’m trying to get in a good night rythme again after that visit to the emergency shook it all up. Because I sleep so bad I try to be very strict in my ‘sleeping rituals’. This time I needed a sleeping pill to fall asleep. I never took a pill like that that so it worked well. I was all groggy until 1400hr the next day. High on sleep :-). You can imagine, how much more bullshit I sold that day. But my mind was all over the place. I had truly a mental diarrhoea! Sometimes meditation helps and I fall asleep but sometimes it is hard to find that calm spot and relax the brain. I took the pill for two days and then it got a bit better. On Sunday when I woke up I figured I’d try to exhaust my body physically a bit. I used to do sport which made me healthy tired and sleeping was never an issue so that was my plan for today.

I took my morning tea outside. It became a bit my way of waking up since it got warmer. It seems like I have been inside my house for the last year so I need the outside. The sun was already shining a bit so I enjoyed that. Dressed of course like an frozen Inuit because even in the sun I, Nele can be cold! It all takes some time to wake up and put my mind in my positive vibe.

As I was sitting there drinking my tea, I checked my garage. I figured damn what a mess! Half of what is in here can be thrown away. So I slowly started to clean up. Calmly, the pace is a lot lower than a year ago. I mean you have to imagine it in the right way. A good day for me means being able to do several small things in my house but not immediately one after another. So I take something and put it on the pile that it belongs. And then after some piling I take a bit of a rest. I call it the grandmas rhythm. And actually I must say I like that pace :-).

Then I saw my racing bicycle standing there all dusty. I won’t race yet but thought it would be a good thing to patch it up a bit again. So I washed it outside the garage. It still needs a general reparation also. Already dreaming of maybe riding it again. Even if it is not for racing. I became slow anyways.

But then I continued my garage again. I was on the roll!! And then I enjoy it to the fullest. At a certain moment I opened up my militarily trunks. You know, those green, big trunks, very useful to put stuff in but extremely annoying to carry. Lots of old shit in there. Working material for the garden, old military things and some sports equipment like my tennis racquet, my racquetball racquet, my shoes for my racing bicycle, ping pong pallets, my baseball bat and golf club. Yes I basically did all the sports you can imaging :-). I played softball and baseball for a couple of years in Leuven and I loved it. We used to play on the military terrain where my current working location is. That is cool, all the nice memories I have from baseball, I relived them every time I passed by that field while running. But anyway as I saw the bat and the club I really felt like playing. I miss the squash enormously. I thought maybe I can just hit one of the small plastic golf balls I have. That way I can’t break anything or only my greenhouse or the window of my neighbours garden shack. Whatever, i wanted to hit a ball. Always loved playing with balls, i miss playing with balls :-). So I first took the baseball bat and hit about two balls. What a feeling!! Then I used my golf club but wanted to try with a real ball. Hmmm dangerous but still worth a try! I put my ball on the tee. Checked the corridor of trees and my greenhouse and … didn’t hit it!! Of course I didn’t! Golfing is lots of exercise but still I wanted to try again. I wasn’t thinking much (as usual) but I thought of only one thing they thought me on the ‘start to golf’ that I followed about seven years ago or longer. It was together with my mom and we had so much fun. Balls and clubs flying all over the place. Hahaha but what I remember from those lessons was The swing! So I swung. The club hit the ball on the perfect spot. It flew perfectly perpendicularly away from me. Hit the tree right in front and I then lost it in my jungle. My friends, honestly that was a golf orgasm!! I am still enjoying that perfect sound and seeing that ball fly! I played with balls again! What a great day!

I quit cleaning up my garage. Enough is enough but then Kirsten came to visit. She is one of my oldest military friends and since the beginning of this whole story a great supporter of me. It is always fun having her around. She has the same sort of humour and when we were together in the army we were no match for any guy who wanted to try us out, giving great pleasure to us as well as to the spectators around us. Many of them wanted but failed to have the courage hahaha. She came by to visit but also to hand me over her medal and certificate of participation for ‘Stand up against cancer’. A yearly event that is held in Belgium and does fundraising for the research on cancer treatments. She drove her bike for 127km in one day, untrained. She is crazy, always did things like that. But I felt honoured she did that with me in mind as well as her mom who is also in a similar situation. Thank you Kirsten. But she was not alone. Two other friends I have did similar events. One of them Barbara ran 40 km!! And then she and Elke also participated this bicycle event that Kirsten did. They are my heroes! Thank you all for that.

After Kirsten left, I cleaned up my kitchen a bit (I still had some energy left) and looked back on my day. Almost no pain, good weather, some cleaning, a great visit and a golf orgasm. What would a person want more? 🙂

It’s a bumpy road

This week I wanted to scream from the top of my longs: 5,4,3,2,1. Unfortunately it turned out I have to wait another week to sing that heavy metal song. On Tuesday I got up and all was ok, until noon when suddenly I started to feel cold. I rolled myself into a blanket like a caterpillar into its cocoon and did some couch surfing. If championships couch surfing existed then I would be world champion. But it wasn’t normal to be cold that way since it was a nice, warm day. Everybody was hot except me. So I took my temperature, 37.9 Celsius. I kinda figured it was going the wrong way. My friend Katrien came to cook for me that evening and the good thing is, despite my high temperature, I did still eat very well. I always eat well luckily! When she left, I took my temperature again and it had risen to 38.8 Celsius. Damn!! That meant I had to go to the hospital. Last time I waited to long to go and doctor Kobe gave me a stand. Hope he is there again hahaha. But he was right. It is just to dangerous to wait when I have a fever. Still I didn’t really want to go so I send a message to Saar telling her that I had a fever of 38.3 Celsius. It’s so ridiculous of me. I knew Saar would send me to the hospital anyway but that I needed that little push so I adapted my temperature a bit hoping she would say: “Oh that’s ok, stay at home, take a dafalgan (painkiller) and tomorrow it’ll be over.”, but knowing it would make absolutely no difference to her wether it was 38.8 or 38.3 and she would still send me to the hospital. Sometimes I can be such an idiot. I just figured I had to be in the hospital anyway the day after for my chemotherapy, so why bother.

Once arrived at the emergency with mom we had to wait. The word emergency gets another meaning at times like that. We arrived at 21.15, I got to see a nurse at 02.30hr and I was finally in my room at the oncology department at 03.30hr. I had to wait there for five hours on a hard chair before I saw a doctor or anyone else.

Don’t get me wrong, I have spend hours waiting on hard chairs in the army and it never bothered me but I can honestly say that this is a slightly different situation. My body was so tired and I was in pain. When the doctor then finally saw me he excused himself for the long waiting hours but he has to follow hospital protocol and wasn’t allowed to see me immediately. All good doc, happy you are here, can I now slap you? Once it was my turn they were immediately very sweet to me as always. I got a bed and a pillow and a blanket. My blood and pee was taken and also an x-ray of my longs.

The following morning I got the results and it seemed I have a bladder infection again. That was where all the pain was coming from. A bladder infection! I should have known! Probably because they changed my stent a couple of weeks ago. I don’t know. Even the professor told me they didn’t really know where it came from. Honestly I was sort of relieved that it was my bladder because then I knew I didn’t get an infection from anyone. I’m very strict in my touching policy, such as giving hands (I don’t do that), kisses (I don’t do that), not going to public places and so on. I am allowing some hugs since some weeks now because I unbelievably miss human physical contact. It has been a year since I actually touched someone. The hugs make all the difference. You realise how important hugs are.

But the consequence of this all is off course that we have to postpone my chemotherapy again with a week. I saw my treating professor that morning. It had been some time since I had seen him because he does his tour to see his patients every Wednesday and I always had chemo on Thursday. He told me I was skinny but I assured him it was not because of not eating enough. He kinda smiled at me (he actually always has a smiling face) and said, (he was probably thinking of my discussions with the dietician): ” Ah yes the name Tahon rings a bell everywhere”. It was not quite with those words he said it but it had the same meaning. Aaaaaah famous, notorious and known at UZ Leuven! I have reached my goal 🙂

But this week I really wanted to be able to say: “yeah 4,3,2,1, to go!” Sadly it is still 5,4,3,2,1. It’s ok, you learn to let go quickly and get back on the wave. I’m very happy I did go to the emergency and it is ‘only’ a bladder infection. It can always be worse. Two days on antibiotics and I feel already a bit better.

Up to next week and hopefully without surprises 🤓

The new tactic

Since I had those very scary attacks the last couple of weeks, the doctors decided that I couldn’t get that specific chemo anymore. That fact on itself is rather important because it means they have to go search for another kind of chemo that has the same effects in my body. My treatment isn’t over yet so it is important to have that chemo replaced by another one. Luckily the doctors told me that other kinds of chemo exist but they are all sort of part of the same ‘family’. Because of that I had to go through some allergic tests in order to avoid having the same allergic reaction the next time that I get a chemo treatment. And I assure you, I do not want that to happen again!! But the chemo is my medicine.

So today I had an appointment in the hospital to have some allergic tests. Again something new that I hadn’t experienced yet. It made me a bit nervous. I actually didn’t think I was nervous until I noticed that I had already run to the toilet three times in half an hour. My stepdad came to pick me up and accompanied me during the whole process of testing. The nurse really explained everything very well. I told her that I am not a brave women and I am afraid of needles. She didn’t really believe me. 🙂 But the truth is, I am actually a real chicken shit. I am very often scared of things but I am a brave chicken shit. That means that although I am scared, I try to find the courage to go through with it. Same in this case, but it wasn’t really scary. I actually felt nothing of those needles.

So the doctor took the tests. In order to know what chemo my body accepts he had to inject into my forearm, the one that made me react last week and three other chemos. He started with a little drup and then augmented the dose three times. Between every series we had to wait fifteen minutes for the result on my arm. The moment he injected the first one, it immediately became red and itchy. The rest went very well until the very last injection (the little brother of the bad chemo) also reacted. I thanked  the doctor for making me look like a drug addict.

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He decided that the little chemo brother would be the one that he will propose to my professor to continue with.

So the next five weeks I will have to stay two nights in the hospital every week. Not my most favorite place anymore. I assure you that the couch and your own bed are heaven compared to crying, coughing or old ladies that listen the panpipes when there sad. But what needs to be done has to be done! The reason for that two nights stay is that I have to receive the chemo in a special schedule. Like the last time but then even slower. And it needs to be followed up closely by the doctors. Yes, another tactic for the last five times that I have to receive chemo. THE COUNTDOWN! Let’s hope my body stays strong and accepts the chemo because I am already dreaming of tropical beaches, cocktails and other nice things!! 🙂

Again a little shock

Every Wednesday I wait patiently for the results of my blood that are taken earlier that day. If don’t receive a phone call by 2000hr in the evening it means that my blood was good and the chemo treatment that is planned the day after can proceed. So I always anxiously wait and than I am happy if I didn’t receive a phone call. I can’t remember being happy not receiving a phone call before, but then again, that had to do with my boyfriends. (yes plural 🙂 and ex-) But anyways, this meant a third  treatment in a row and also after this one only five to go. Yes I am doing the countdown.

Since I am now on an allergic schedule I had to be in the hospital early in the morning because it would take all day to get the chemo. By the time I was well settled with the cooling cap, cooling mittens and now also cooling shoes, it was about ten AM. Imagine my mood: minus four hundred degrees! My head cold, my hands cold and now also my feet cold. There are no photos of me dressed like an Inuit, because at that moment I just wanted to smash the camera and the designated photographer of that moment. Erica 🙂 But it is important to avoid getting the tingling in your fingers and feet. This is a side effect of the chemo. It never goes away they say and can cause problems with walking or manipulating things with your hands. I have it already in my toes and a bit all over my feet but not in my fingers yet.

The first bag of chemo I get every week runs over about an hour. Since I have to wear the cap, the mittens and shoes for one hour and fifteen minutes, this bag passes without many words coming from my side. I am like a menopauze woman during that period. This time Erica was with me and she continued to talk to me anyway. After a while I became less of an ice queen and started talking again. And surprisingly it seemed that the hour and fifteen minutes went faster then usual. Well done Erica!!

The second bag, my allergic-reaction-bag was set up to run very slowly over thirty minutes where they administer it drup by drup, only ten milliliters in total to avoid that the body reacts to it. That went smoothly. So they started the next thirty minutes a little bit faster and then another bag of the chemo would be administered over a period of four hours after this one. Unfortunately we never got to that point because I again had an allergic reaction to it.

The second part was only running for about five minutes when I started having a cramped feeling in my chest. I started getting hot again and decided to call the nurse. Now I know how an allergic reaction feels so I knew that again, I had one.

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So I called the nurse a little bit quicker then the first time. Fortunately I did that because from then on, everything went very fast. I guess there were about three nurses and two doctors already around my bed dealing with me. I remember I had to puke and felt so hot that I threw off the cooling cap. My body felt so awful, I couldn’t control what was happening to it so I asked the nurse to please give me something. Then I puked and I was gone. Just gone, I remember closing my eyes while they were taking my blood pressure which was non existing. Erica told me I was laying there with my eyes open and I thought my eyes were closed almost the whole time.  Due to the allergic reaction I had a blood pressure fall. I woke up again seeing the doctor lifting my legs. Then I had to throw up again and go to the toilet. The day before Saar send me a message saying that the next time something like that (allergic reaction) happens I am not supposed to go shit calmly before, like I did the past week. 🙂 According to Erica I did that this time again. The next thing I felt was my body having all these reactions and I had to run to the bathroom. Seriously people, puke and shit all over the place!! I kid you not 🙂 But believe me, a person in that situation has few or no scruple left. The shit was everywhere but I didn’t give a shit 🙂 (Yes I might exaggerate a bit while telling this but still there was a lot :-)) Erica went inside the bathroom with me to help. I was in there hanging on the thing where they connect the baxters and the bags of chemo because of course I was still attached with my portacath. They had given me cortisone again and anti-allergic stuff but it took about 45 minutes before I was getting a bit better again. The trashcan in the bathroom had transformed into the puke-bin and the toilet continued to have the foreseen purpose as it normally has. Erica was baptized by me, to my personal shitcleaner. 🙂 She was so sweet and helpful and stayed by my side the whole time. She also remained very calm during the whole crisis. Can anyone desire a better sister? After the 45 minutes I saw that my face and my hands returned to a more or less normal colour (I don’t know if there is a colour that exists that is more red then red) and I was able to return to the bed. Almost immediately I fell asleep. Getting such a crisis takes so much of your energy. I do never EVER want to experience that again! Els, the nurse whom I got to know the weeks before during my previous visits was also there for me the whole time. She also stayed very calm. I remember her saying: ” Stay here Nele.” She is also so sweet.  Afterwards she sat with me and told me that she thought I was going to die. She had seen allergic reactions before but not very often as sudden as mine. Usually it comes up slowly.

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But by now I know, it can never just be normal when it comes to me. I always have to exaggerate or go into the extremes. Jesus Christ!!

But of course I was not going to die. I am not going to die.  That is not the plan. Not over a stupid allergic reaction. Not over nothing actually, besides old age. 🙂

Els had told me I was going to feel very energetic because they gave me so much cortisone. I immediately felt it because as Erica and I were driving home, I felt that I was not ready to be in my couch again. The weather was so nice so I asked her to drive to Leuven and have something to eat. I was starving because off curse I had puked out everything that was in my stomach. So we did. It gave me even more energy because it was the first time in a long time that I was outside amongst other people. I felt alive again and enjoyed it so much. I was so happy, you have no clue. After a year of seeing my living room, it was very nice to change decor and see the Big Market of Leuven. Saar said that she found it amazing that after such a crisis it looked like I just came back from a holiday. 🙂 As for me, I just forgot about what happened as quickly as possible and just enjoyed…. the atmosphere, the people and ……. my water 🙂

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Off course there is a consequence again. They can not administer me that specific kind of chemo anymore because that would be way too dangerous. They have some other options of chemo that have the same goal, so next week I have t undergo allergic tests to see which one they can use for the next five times so I don’t shock everybody anymore. :-).

 

 

Good times!

You all know Positivity is my main thought in my healing process. Here are some pictures showing the good times I had, despite the difficult and painful moments. It is not on festivals or parties but that is not important. It are the moments together that made me happy. And the many visits I get!!

 

A little scare

After my last post you are all probably wondering how I am right now? Well, as I always answer the doctor at the oncology day clinic when I get my chemo: GOOD! Last time he told me:” Ah yes Mrs Tahon, since I got to know you, you are always good!” , with a smile on his face.

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So I’m good. Since I got the new stent and the medication for the nerve pain I’m feeling really better. It’s to say I would have felt really good before also if I didn’t have those complications that are now being tackled. As for the new stent, it hurts really less. The first days I took a pain killer but now I don’t need it anymore (I wanna take as less pills as possible). Also I pee again without pain! Hallelujah!! You have no idea how the peeing hurt. All my muscles would tens and then the pee was not coming out not normal either. You know when you hold your pee for a long time and then the rescue toilet is there and you just let go. It feels like heaven right? Well I didn’t and don’t have that anymore, but at least now it comes out more or less normal ;-). As for the sleeping, that improved as well. With the previous stent I would go peeing every hour! Every hour of the night! with pain! So basically I never slept anymore. And in order for me to heal, sleeping is really important. I never had a good night, but now, with the new stent I sleep two or three hours in a row!  It feels so good! I dream again, I finally get into that deep sleep where dreams are and I can escape for a moment of this situation. And now when I pee, I am like a baby on the toilet and like a zombie returning to bed and continuing my sleep. Heaven!!!

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The nerve pain is now almost under controle thanks to the medication I take. I take one pill for the night together with another that soothes and calms my bladder and then in the morning I take two. Acceptable for me. It still is present a bit, but I can move around again without too much burden. I start to have a life again. Ok, I still avoid public areas to not catch a virus or something. I have always been very strict about that and I will continue to be for the next period until I’m done. I am like an old school principal and forbid anyone to come and visit me if they are feeling sick or have been in contact with any virus or bacteria. Nope, only healthy people can visit me. Not even if their kids are sick and they are not. I do not wanna die due to a stupid virus. I had to endure already enough for that. That would be completely ridiculous.

This chemo I experienced another event. I was a bit nervous wether or not I would get the chemo. I had chemo last week but before I did’t have chemo for four weeks. My blood was never good. I got a blood transfusion twice and one time extra thrombocytes. I guess my body needed a break after ten rounds of chemo. You rock, my little body!! But anyway I was very nervous for this week. I want some chemos because I wanna do the countdown. And yes my blood was good, even very good. Last week the doctor told me I had to do walks in the forest and that was exactly what I did Saturday last week. Maybe it really helped. So there I was yesterday for my chemo. I got my first bag, everything ok. Then I got my second bag and after about twenty minutes I started to get really warm. Even my head that was wearing the cooling cap to keep my hair was heating up like a sauna. First I figured it would go away so I waited a bit but the when I saw my hands turning completely red I thought it was time to call the nurse. I started feeling nauseous, dizzy and like I had to puke so I went to the toilet hoping not to fall. I came back from the toilet and there the nurse was. When I told her how I felt the doctor and other nurses were there in a split second. Apparently I had an allergic reaction to the chemo. That apparently can be really dangerous. Luckily it wasn’t too bad with me yet. But still, it gave me a bit of a scare. I had never felt my body doing something like that. Vanessa, my friend that was accompanying me that day also thought the same like me that it was just the chemo. Now I know when it isn’t the chemo!! It took my complete energy.

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The consequence now is that I have to follow the allergic schedule which takes really longer then the days of chemo now. Then I am given the bag of chemo in very small amounts together with medication so I don’t have a reaction anymore. I don’t really mind. Thursday is chemo day anyway, whether it takes five hours or nine, I don’t mind. Another adjustment, as long as it kills the fucker inside of me like it has already done!! I just continu the therapy, I will follow the pace that my body gives me. Remember the ode to my body that I wrote.  I don’t mind being a bit tired or not being able to enjoy all the pleasures of life that I would usually do. I just follow the pace of my healing and I am ready for my second life! I believe! That is important. I believe I will get through this and I shall have a second life. I am ready you guys for my second life, are you? Hahahahaha