Well I know it's just a spring haze

 My last real post dates back to the beginning of August. It's not that nothing happened since, on the contrary, but I just didn't even know how to put things to word.

Currently I'm working 4 hours a week. Which isn't a lot, and I'm nowhere near teaching at this point, but it's a start. The bureaucracy concerning work and illnesses etc...is mind-blowing. I'm currently at a point in which I think life was much more calm during cancer treatment than it is now.

Anyway...last Tuesday I decided to go into the woods again, after a long, long time. It was a very foggy day, which was perfect, because sounds get quieter and the entire world seems to be more calm and serene. I had my iPhone with me and managed to get some decent shots out of it, considering.



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I don't think I've posted an image of me on here, like ever. I did! Currently my hair is growing, which I love so much. So far, no chemo curls, but hopefully they will show one day, because I want to have curls for once, even if it's only temporary.

This is me, post-chemo. Pic was taken today, so more recent than this is impossible.




Thank you all for always taking the time to comment. I am truly sorry I don't comment back too often, if at all. That's a pathetic line to use, but I do mean it though.

I was supposed to see my oncology nurse today, but they called yesterday, informing me she still wouldn't be there. A new appointment was made for Thursday and I have all my fingers and toes crossed she will be there. It's been too long. A lot of tears have been shed the past couple of weeks. And although professional help is available, the psychologist I tried didn't work out for me, neither did my therapist. I am very picky when it comes to people, and their help/support. I don't let you in easily and if I don't feel an instant click, it's not going to happen. I have this click with my oncology nurse, and she offered to be there for me when needed. Sadly her dad got very ill, so everything was put on hold.

 Last Thursday I heard that this Tuesday my oncology nurse Antoinette wouldn't be there to see me due to family circumstances. I was devastated, because the need to see her and talk to her had never been more high. I understood though, and hoped that we could soon set up an appointment.

Then this Saturday I got mail from the hospital. All sorts of appointments for june 30th with loads of people and also an appointment with a nurse, but not Antoinette. I freaked out. Would she still not be there by then? How will I ever be able to get through the rest of this road without her, how will I be able to deal with everything without her? 

This morning I called the hospital. She won't be there until at least the middle of July, or at least not frequently. The receptionist was kind enough to send Antoinette a mail, to ask if and when she would be able to see me, but my hopes are very, very low at the moment. 
And I don't know how to deal with all this. Just a few weeks ago she promised me I could see her more often, could even call her and she would listen. And now she's not there. I understand why, really, but my feelings don't. 

Back in my life I've been hurt and disappointed by a lot of people. Promises being made and never kept. It's all coming back again. I've developed trust issues, I don't let you in easily. But when I do, it means I trust you. I trust Antoinette, which makes this all the harder to deal with. Not again. 

I really hope I'll be able to see her and talk to her soon, and not somewhere in August. Because I don't want to enter another stage without her, I won't, and I can't. But I also understand that this can't be postponed for so long. I also know that August, for my wellbeing, is too far away. 

Surgery did not go to plan. At least not for me. I was supposed to go home the same day, but ended up spending two extra nights in the hospital because I was in so much pain. Apparently I suffer from nerve damage and pain. The burning sensation is really painful. Chances were slim it happened during surgery, I was even told before that this surgery usually doesn't cause too much pain. I am the unlucky one once more. Pain medication doesn't seem to help much, although the pain is sometimes less. It's supposed to get better, but this morning I was in so much pain it only seemed to get worse again. Currently it's okay, but I'm also high on morphine.

My emotions are all over the place. My freedom is yet again limited and the pain is also limiting me. I really hope that in the next few days I'll become myself again, with less pain.  

 When I got diagnosed with cancer, I thought everything would change. And by everything I mean 'me'. I thought that now would be the time I would be able to just be me, be happy with myself, stand my ground etc...

Things have indeed changed, I have learned, for instance, that I am a lot tougher than I thought I was, that I am not a quitter, and that I'm more positive than I believed I was.

What hasn't changed, is that I still find it extremely difficult to be honest with the outside world. I still hold back a lot. I still want others to feel comfortable, over my own well being. I don't want to take up too much space, because others deserve it more, somehow.
When I landed in the ER back in November, I cried and when the nurse asked why, I told her I felt so out of place there. I didn't belong there, used up time and space other people deserved more. She told me I have cancer, that's not a light illness. They get paid to help me and also, better be safe, than sorry. Of course she was right, and yet...I still feel this way. When I was submitted to the hospital I was angry mostly, but also still felt I didn't belong there. I shared a room with a man who also had cancer, but could not be cured. Whenever people tell me I had it rough with the chemo I nod, agree even, but always think it could have been worse. It wasn't so bad. It was, but I still think other have it worse than me.
Whenever my blood levels drop, I blame it on myself. I fail I did something wrong. Antoinette, my oncology nurse, has told me several times I'm not to blame and yet I still do.

Currently I'm in between chemo and the operation. My mind is working overtime. I try to feel, to understand, but it's too much. I sometimes try to express myself, but often hold back. Because I don't want to burden people, but also because I feel they don't always understand.
I'm longing for a meeting with Antoinette again, because she is the one person who makes things feel less harsh. But I don't ask for it. Because I don't know if I'm allowed, I don't want to take up space others might need, I don't want to disappoint. And also because I'm not the only person dealing with this illness, so shut the fuck up, basically.

I'm more aware of this now, but to change it? I called the hospital this afternoon to ask about the iron transfusion. Calling them made me feel nervous, because "oh good god, there we have another person bothering us". Then I was told they planned me next Monday at 8:30. A whole week away and early as well. My mom told me to call back, ask for other options. It took all the courage I had, because again, didn't want to bother anyone, didn't want to be 'that person'. Taking up my own space was difficult before the cancer and I thought cancer would change it all. But of course it didn't. When will I learn?

 To celebrate the end of chemo, I went to the south for a short holiday with my parents. It's always lovely there, and on Saturday the weather was finally spring like. I was able to hike, which was absolutely wonderful. It wasn't a long hike, but all in all I totalled about 8km that day, which was unthinkable a few weeks ago! 















I also bought a gorgeous book for myself as a present for surviving chemo:

 It's been long since my last update. 

February 19th was supposed to be my final round of chemo, if everything went according to plan. Which it obviously didn't, because I react so strongly to it. Last week I received my 5th blood transfusion, because my HB levels were at its lowest so far: 4.7. My chemo has been postponed so often, that I am now a month behind. And it's weird, because for a while now I adjusted to the chemo, the routine etc...I embraced it even. 
And then low blood levels happened, again, and there was a talk of maybe cancelling the last round of chemo for good. I had a good week to think about it, to feel. When my lovely nurse first told me, I panicked. I was so set on finishing, had accepted the fact that I would have to endure 2 more chemotherapies etc...So when she told me they were thinking of cancelling the last round, I panicked. But the more I thought about it being an option, the calmer it got in my head. It was enough, almost 7 months of chemo was taking its toll. But I found it scary to just cancel the final round, because what if...? But somehow I started to feel okay with no more chemo. The latest blood transfusion gave me my energy back, after a long, long time. The thought of having to endure two more shitty weeks, of the dreadful Taxol etc...was actually making me anxious. I was done with it, I didn't want to get ill again, didn't want to have my energy levels drop again. 

Today I had a talk with the oncologist. My blood levels were good, so he thought it would be best to have the last round, if I was okay with it. I wasn't, but couldn't say. Because as he said: what if skipping this last round turns into regret later because it's just not good? 

But I find it so hard to go into 2 more chemotherapies now. My mind had accepted the fact that I was done, and now I have to adjust again. And I really don't want to feel ill again for 2 more weeks, I really don't. Seven months of chemo is such a long, long time and it feels like it will never end. It will, because 2 weeks from now I will have finished, one way or another, but it feels so far away now. I am so done with it all. 

And then after that I'll have to endure all the scans, the operation, radiation for at least 5 weeks and immune therapy till September. And while for several months I was okay with it all, right now I am not. I want my life back. I want to be okay again. 

Yesterday was a weird, confronting, intense day. It all started out perfectly: went for coffee with a dear colleague and actually had the energy to do so. Was really nice, we sat at the cafe for a good 2,5 hours. I even managed to get into town afterwards. 
The only thing bothering me, was the cramp in my fingers I'd be having for a day. I called the hospital to check with them, since I'd been having all sorts of weird symptoms the week before due to low blood levels and always needed to have it fixed by either medicine or blood transfusions. 
I spoke to my nurse who told me to have my blood checked at the hospital that day. It was late in the afternoon by then, but she really wanted me there before the weekend. It turned out my magnesium levels were low and with the symptoms I had, plus the fact that I react so strongly to the chemo, the oncologist told me I had to spend the night at the hospital. 

My worst nightmare. I've never spend the night at a hospital and really didn't want to now. But he was persistent and I really had to. Had to get an IV with extra magnesium and wasn't allowed to go home. I didn't bring anything with me, it's an hours drive to my house and my parents were in Antwerp for the weekend. Luckily my sister lives nearby and she brought me some stuff and basically lifted my spirits that evening. Because boy oh boy was I angry and upset. 

All in all the experience wasn't nice, barely slept at night because they had to measure my blood pressure every hour until 2 am. And then I just couldn't sleep, it was light, there were a lot of noises, my roommate needed constant care and attention etc...
It also wasn't a nice experience, because it was so sudden and I had no say in it. 

Luckily I got to go home today, with extra medicine I have to take till Thursday, when I return to the hospital again. 

I begin to realise now that I actually have it rough with this cancer and that this isn't normal. Even my nurse told me they haven't seen anyone respond to chemo the way I do. 

Today is the 17th. Exactly five months ago I got diagnosed with breast cancer. How surreal that still is. How surreal also that it's been five months. For some reason that doesn't make sense, it's still summer in my mind, a part of me is still back there, back in time. It's weird also, because the first couple of weeks went by so slowly, and all of a sudden five months have passed. And so much has happened, and so much of that still feel so unreal. I just keep on going, from one day to the next, from one week into the next, from one round of chemo to the next. There is nothing else. Well, there is, of course, but cancer is a big part of everything these days. I have developed a rhythm, which in a way is giving me comfort. I know how my life rolls these days, I don't have to think about much else but this cancer stuff and in a way that's comforting. It freaks me out a little even to think about the day it's all over, how far away that may still be though. 

But five months...five months from now I'll probably be in the final stages of radiation, some of my hair might have grown back, I will near the end of a long, intens, guided time of my life. I can't even imagine, and I shouldn't. Still 3 more months of chemo to go first.