Well I know it's just a spring haze

 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.  

 Seven years ago I came in contact with a girl from London, through a LJ friend. Her name was Judy. We shared the love for Tori Amos at the time. In april 2009 that same Tori was supposed to do a concert in London, where she would promote her new album. Judy invited me over and I had a week off from work then, so it was totally possible. Now...I'm not really a people kind of person. Being around people for 24/7 can be quite difficult for me, especially at that time of my life. But we clicked, instantly, when we met. Not once did I feel drained, exhausted, overwhelmed. I stayed at her house in the North of London, which was an amazing house. We watched a lot of AbFab episodes, we went to see Tori, who, for the first time ever, had to cancel due to no voice. We explored London together, and really had a wonderful time. I'm not quickly at ease with someone I just met, but we just clicked. 

That summer she same over to my country for a few days, and again, it was relaxed, lovely etc...

In september of that year we went to see Tori together again in London, and then also in Amsterdam. 

Since then we kept in touch, though we didn't visit each other anymore. But she was the best. 

Then tonight I got a message from a mutual friend. Last night she passed away, from complications of surgery she had just before. She was only 31 years old. I can't believe it. I had just this week thought of maybe visiting her again this summer. And now she's dead. How is this possible? I was just reading our email conversations again, how can this be? 

I'm the one with fucking cancer, and she dies of fucking pneumonia which she developed after surgery, which her heart couldn't take (she had a heart condition). 31 is too young to die. This world doesn't make any sense. 

 Well, progress has not been made whatsoever health wise. In an hour I'll return to the hospital to have a talk with the oncologist. The side effects of the chemo have been massive so far, and yesterday I called the nurse while in tears. I have to be prepared for being submitted to the hospital tonight, but I don't want to. It means that the little freedom I still had, is then gone. But I also know that the current situation isn't ideal either. I just wish I was feeling better, could do my own thing again, have a decent meal etc...

I hope the talk with the oncologist will bring me something positive, something to give me my strength and faith back. There's little positivity left at the moment...

 Yesterday I got my first immunotherapy and chemo treatment. It took all in all 5 hours to get all the medicine, with 1,5 hours of pauses. Next time it's supposed to take less time, because of the immunotherapy that my body had to get used to. During the treatment everything went smooth and well, but at night I sensed some nausea and my legs started to irritate me. Went to bed at 8.45 and had a lousy night of sleep.
Woke up this morning feeling well again, even went into town for a bit, but that wasn't the best idea. 

My taste has already changed and things just don't take nice anymore, especially bread. The nausea, despite all the medication to prevent it, is not fun either and overall I just feel shitty. Not too bad, just bad enough to only want to curl up on the couch and sleep.

Hopefully things will improve soon again so that I will feel a bit normal again. Shame I can't sit in the sun anymore, there goes my zen time at the lake for the rest of this summer...

Currently I wish all treatment was over and done with, and thought of having to do this for 6 months is not lifting my spirits at the moment. 
But I have to deal with it and hopefully it will work and make me well again.
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Yesterday I had my PET/CT scan and today I would get all results. And by all, I mean also the results from last week's MRI etc...
The appointment got delayed by 15 minutes and eventually the stress got the better of me. When we entered the oncologists office, I broke down and cried. Luckily he understand and told me that "everything looks good so far!"

PET-scan looked clean, which is good. Heart pump function was working well as well and so I could take part in the TRAIN-2 study. However, the MRI did show something in one of my lymph nodes and so tomorrow more tests are required. Which means I still don't know when treatment will start and what the treatment will be like. 

Four weeks on and still no real progress and it got the better of me. This is so overwhelming and tiring and good god this is only the beginning. This is all so scary, the unknown, the treatment, everything. If I could fast-forward time to the day I am 100% clean, i'd do it in a heartbeat. 
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Last week at work wasn't my best week. The entire week consisted of important tests the students had to take. I entered the results into the computer and was told that a lot of students didn't make much progress since last year, or even fell behind. I felt like I failed. Being the person who already thinks she's a failure at life and constantly doubts herself, this entire event wasn't helping much either. I still experience anxiety over this, I feel stressed and my breathing isn't calm and relaxed. It's like I'm finally being exposed as someone who can't teach after years of pretending and hiding behind someone else. And while that may not be true, I somehow can't feel it differently. This is what I feared: failing. 
I try to control my breathing, calm myself, but it's not working so far. 

Last night I dreamt I was in Ireland, which was kinda obvious because of all the photos I had looked at before I went to sleep. In this dream I experienced blackouts. I was doing something in my dream I had wanted to do for a long time, felt good about and then all of a sudden I was back at the apartment. I remembered being in a boat, looking at the surrounding feeling excited and happy and then I was back at the apartment. And in my dream I thought: How did I end up back here? I was on a boat, I had to finish that journey for at least 1,5 hours, why can't I remember anything from it? And then a bit later I started to wonder what day it was, and couldn't remember at all and I freaked out because I was there for only a week and I was missing so many moments and then it turned out it was the day before I returned home and I had hardly any memories from my week there, just parts of it. 

I, obviously, feel like this dream is reflecting my state of mind perfectly. Chaos, not feeling on control of things etc...
And in real life I really want to run away from it all, which is an intens feeling, but once I experience this kind of stress, I want to run and not deal with it at all anymore, because I feel ashamed, a loser and am just scared people will find out I am a fraud. 

Yeah...issues much

Also back on antibiotics. Bladder infection was a constant factor in my life for weeks now, I even got used to it and thought the abnormalities were actually normal. Until I got backaches and other issues and the doctor told me I had a severe infection. Got ABs and have to return to his office on Monday to figure out what causes these endless infections. UGH! Acupuncture doesn't help, taking vitamins, cranberry pills etc...all don't work either. And these infections can be caused by so many things and often no one knows what does and you just have to live with it. Which I find difficult to do, obviously. Even my acupuncturist doesn't know why these infections keep coming back. Something is just not right down there. My anxiety/stress is not helping much either...

And so yeah...I just feel blegh right now, both mentally and physically. It will pass, but right now I want to hide from the world and just cut of body parts. 
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When I woke up yesterday I felt rubbish. First day of the holiday and I had a sore throat, a body that ached and just an overall "ugh" feeling. But my niece were supposed to spent the weekend with my parents and I really wanted to spent some time with them. Throughout the day things got better and I had fun. Back home I collapsed though: was shivering from the cold, took an endless shower and went to bed early. Had a dreadful night of sleep, with weird, endless dreams that continued while even awake. And most of all: a body that ached. I woke up extremely early feeling like crap, but I soon started to feel a bit better and managed to spent the entire day with the 2 girls. But it's not nighttime again and my head is pounding, my body aching and I still have soar throat and I just feel miserable.
Why does my holiday have to start off with me getting ill. And why couldn't I get ill during a school week?

Right now I just feel so crappy that I don't know how to lay down in bed, because everything aches so much. Sigh. Apparently, even though I thought I managed to survive the past couple of weeks quite fine, my body decided to tell me it needed this holiday ever so badly and needed some rest as well. Which I don't give it yet, because of the girls, but yeah. Apparently my body tells me the past couple of weeks were actually more intense than I thought.

I hope I'll just have a better night tonight though!

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 This summer, more than any other year, I find it difficult to be absolutely mindful. I am constantly counting the weeks/days till a new school year begins, which stresses me out because OMGWTF fulltime job etc...I only have 1,5 weeks left of this holiday but it feels like it never started. I enjoyed myself, sure, but this constant nagging feeling just clouds everything. Sigh. I enjoy freedom so fucking much and the thought of next year is stressing me out so much. And I should stop it because I still have 1,5 weeks left. I just wish HOW I could stop this. 

Something positive then: discovered the Games of Thrones books. Took me a while (100 pages or so) to get into the first book with all those characters and there many names, but finished the first book the other day and am now 200 pages into the second book. Love them, and finally a series of books again I enjoy, been reading too many "meh" books this year. I also decided to watch an episode of the TV show, but gave up because I didn't want my own made up images to be spoiled. 
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 So I've come down with a bladder infection it seems. I had one when I was 5 or something, so 30 years ago but apparently my body decided now was the time to get another one. And during the weekend as well. Seriously not funny. Grmbl. 


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