myhistiostory

It started off with an appointment with my doctor for a check up. He seems to be a bit concerned about my blood work and wants to look at my CT immediately. So I'm guessing he'll get back to me very soon for an update.

Then I had annother doctor appointment to get a CT done. Check :)

Then I had strolled around for a while and got some stuff on the sale. I haven't been shopping in a while and seeing as so much was on sale (half of half price ;) I thought I'd make a couple of purchases. Bought some sweaters that I'd been eyeing for a wile ;)

Then I met up with the Ung Cancer (Young Cancer) Stockholm crew for coffee. It's so nice hanging out with them because they understand everything I'm going through, and I understand them. I don't have to explain why I feel the way I do sometimes, or what I've been through, and neither do they. We just get it!! Of course we talk about stuff, but there's no justification needed nor is there any raised eye brows or concerns that someone might not be able to "take" it. I just feel...at home.

Got back, had a small plate for dinner and now in bed watching the Simpsons :)

Will blog more tomorrow!! Night night xxx

I woke up this morning and I was a mess. I could barely get out of bed. I couldn't move my body and I could barely talk, not that anyone was there to talk to, but the pain in my body was just too much. It really bummed me out because I was suppose to have a friend come over today for lunch and fika but I just couldn't move, what kind of company would I be then?

As the day went by, I tried to gather some energy. It had been a couple of days since I'd been swimming and I thought that maybe that could help me gain some energy. Said and done, I went swimming. I did some exercizes then I went and sat in the jaccuzzi to relax my body a bit, release some tension. It felt great.

Now I'm going to sit and write my offical letter to Försäkringskassan with the intent to sue them. Yepp, that's right, I'm going to sue them. Actually, it was recommended by one of the lawyers at Försäkringskassan ironically enough. I told her about my case and she recommended me to sue them if I felt they made a mistake in my case. So, wish me luck, it's going to be a loooooooong letter haha.

Will try to make a video post soon xxxx

Sorry for the poor update, not been feeling too well the last couple of days. I don't really know how to describe the feeling I get when I'm lethargic. It's not just lethargia I experience, but pain as well. I feel pain all over my body, to the extent it hurts to shower. I find it hard to wake up and hard not to fall asleep. Such a backward situation haha. 

So, my nieces and my sister went back to Egypt today. I was really sad about that. No longer will I have Jana come into my room in the morning saying she wants to watch Happy Feet or Shrek and cuddle. No longer will I have her come barging into my room every five minutes. It's sad. I'm sad. I miss her and Diana terribly. Wish I could be closer to them all the time, but what can you do...life isn't always fair.

Anyway...I need to get a haircut I've realized. My hair is a mess...in all aspects of the word ;) Will probably go tomorrow and get this shit done haha.

Will write soon xxx

So I had the best day today. I really needed it. I had some energy today to do things (I think I'm about to hit a major energy soon because I'm going to decrease my cortisone again tomorrow which ALWAYS deprives me of my energy.) 

So anyway, I got up, cuddled and played with my niece. Then I went to town to meet Nattis who's leaving for London tomorrow and went to Panduro (an arts and crafts store), and got some stuff for my niece to make a t-shirt. We had a bite to eat and then we trollied off to the Photographic museeum to see this amazing showcase of a famous photographers work of animals in Africa. His porpose was to show the beauty of animals in their natural habitat only using a 2X2 lens. It was amazing ;) Then we went over to Nattis place and had some dinner with her family and just hung out. It was really nice to just do something relaxing after such a long day. It was just what I needed and I felt great about it. Absolutely perfect.

I've been entertaining myself by watching the infamous documentary about Planet Earth. Our planet is by far one of the most fascinating places. Just everything about it, how the mountains form, how animals live and interact in nature, and so it goes on. I've always been fascinated about nature and the likes and I'm completely hooked.

Also, I've been reading this book that is so fascinating. Seriously, every page that I read I completely recognize myself and I always find myself smiling because it's hilarious. So, it's safe to say that I have some development to do in the coming future hehe.

Anyway...I have some things I need to do so will check in later.

/H

It's felt like the longest day ever, yet it still hasn't come to an end. After not getting any sleep I was at the hospital at 8 to get some blood tests, then I had a Dr's appointment at 10 and then an appointment with my therapist at 13.00. 

The doctors appointment went well, despite my scepticism she was actually really nice. She admitted however that she has never encountered anyone with my disease, it's funny to hear that with most doctors except my original one haha. So everything seemed to be going fine for now, even though my values aren't ideal it wasn't anything that was too concerning at the moment which is great news for me (hey, I'll take what I can get!) She's also ordered a scan so we'll see how my hip is doing so far :)

Then I had some therapy and as usual the tears were flowing like Niagra Falls. Despite popular belief I'm going through a lot of stuff, emotionally, physically, left right, up down. There are a lot of things I have to cope and deal with and I'm glad I'm getting some professional help on the way. It's also nice to see her every other week to just vent and spue all my thoughts. 

After that I met up with a couple of friends in a mall close by. I haven't left the house in weeks (bar going to the swimming hall) and I needed to get out and be social for a while. 

It's been a loooooong day to say the least. I think I might pass out early today which is good considering the lack of sleep last night ;(

Tomorrow, I do chemo!

Good Night xxx

yeah yeah it might not funny considering the circumstances but to be completely honest, that's how I feel. I can't help it, once I feel that wave of lethargia fall over me there's no stoping me from falling asleep. I got up about 2 hours ago and I had a bit to eat and paid my bills.

So what did I do today? Well, I felt enough was enough. Our dog needed a shower and a pedicure. Easier said than done. First I thought that it would be too cold to shower him outside. So after multiple failed attempts of dragging him to the bath, I said fuck it...it's either shower him outside or have him stink up the house. So, I dragged him out (well, I lured him out with a pig ear haha) and tied him to the fence. I thought he was going to make the biggest fuss ever but he immediately went in submissive mode and went with the flow. In fact, he even liked it, lifting his legs and paws to let me wash him thoroughly. Of course, I ended up having quite the shower with him. By the time I was done, my sister and one of my nieces had come back and she was hypnotized by the sight of Hutch (the dog) and how wet he looked from the shower (it was quite funny.) Anyway, I dried the poor thing and brought him in. Then started the biggest mission, cutting his nails. Man oh man, that took longer than the actual showering. It's not that he was being fiesty it's that he thought I was playing with him so he kept on jumping and playing and whatnot. Anyway, said and done. Hutch is now a clean and well groomed dog. 

By the end of the ordeal my back was KILLING me. I couldn't stand any longer. So I basically had a shower, had a bite to eat and passed out (hence the feeling of waking up from the dead.) Normal Hebs would have done a billion other things after that but Hebs on chemo...shit in hell. I do one thing and I'm OUT!!

So tomorrow I have a doctors appointment. It's not with my regular doctor so I'm a bit apprehensive about it. After my year with hellish doctors I usually get a bit defensive and sceptical towards new doctors. But my original doctor is amazing but he's on vacation ;(

Anyway, will try to update again tomorrow, it's going to be a long day so I think I need to try to get to bed early.

Night night/H

So it's been a LONG while to say the least. I completely disappeared for many reasons. So much has happened since my last blog update and where I am right now. I don't really know where to begin but I'll try to make a brief summary of what has happened over the past couple of months.

October

I had just had my 6th chemo session and two days later it was my birthday. So I asked a couple of friends to go out for dinner. I didn't want it to be so formal, rather just a nice group of people enjoying some good (really good Indian food) and to celebrate everything and anything. I had the best night in a long time and some of my closest friends (both old and new) were there. 

Everything since just went a bit crazy. I was finding it hard to communicate with my parents despite having tried several strategies. On top of that, I didn't feel like I was getting the support I needed from them. It was hard to say the least. It really brought me down. So far I'd been spending most of my days alone and I didn't see anything changing on their behalf. It was quite painful and lonely and I had a lot of time to think. I won't go into too much detail because this is after all, a summary :)

November

By now I was still feeling under the weather. I was getting weaker and weaker and my energy levels were dropping completely. At this point of my chemo schedule, I was suppose to go down to once every third week. But when we did a check up after the 3 week interval, the doctors noticed that my hip wasn't showing any signs of healing and my CRP had gone up again (it had decreased for a while.) I wasn't responding to treatment. The only good thing about this was that at least my hip wasn't getting any worse. But because of this we had to increase chemo again to every week for another three weeks with double the dose than originally planned. Above ALL of that however, the cortisone was killing me. I was taking 50mg a day (highest dosage you can take in a day) and I was feeling every side effect possible. I was distraught. My face was so swollen it had looked like I'd had an overdose of botox, or like someone just pumped air into my face. In fact, my entire body was swelling up and I felt more and more uncomfortable for everyday that went by. I couldn't breathe, I couldn't fit into my clothes, I couldn't sleep, and I was in a lot of pain, everywhere. By now I had also been in emergency twice for several reasons and the problem with my family wasn't getting any better. Lonliness and heartache was all that I felt most days, but I tried to keep strong...with everything I had. 

December

Chemo was now back to every week and the effects were really getting to me. I started losing a bit of hair (nothing dramatic, but definitly something I noticed.) Things started to get a bit better with my mom at least when I felt that I had finally gotten through to her about how I felt. It was a great relief and I thought that it would give me more energy, but the chemo had really done it's job this time, I was feeling week, disoriented, and lethargic (more so than before.) The good thing from all of this is that I started to go swimming (with the OK from my doctor of course ;) The first time I went swimming I almost cried. That feeling of moving my entire body for the first time in months is priceless. Since I started I've been going a couple days a week which has really helped my mental well-being. It's amazing how much we take our bodies for granted, and I think that only when you have been deprived of your body somehow that you will really appreciate what you have or what you lost.

Christmas

My sister came with the kids from Egypt to spend some time with the family. It's really nice having the kids around and it's definitely cheered me up a lot. I love hanging out with them and they're a great distraction from everything that's going on ;)

So, that's the sum up for now, like I said, a lot more has happened but I will update soon again to go more into detail about certain things that I've been thinking about. 

P.S. Chemo has now been changed to Fridays instead and my next chemo session is after tommorrow. Will definitly update before then :)

/H

I feel so weak. Physically weak. My mind is running but my body is sleeping. What a pickle.

/H

For clarification: I don't like using the approaches that I mentioned below. In fact, these approaches are usually the LAST resorts I turn to when I've tried EVERYTHING else. This is not who I am, nor is it how I like to deal with things. I don't just go crazy on someone, I do it with intelligence. I only do it when I'm 110% sure that I'm in the RIGHT. I also do it strategically because I always have to be one step ahead of them. Remember that I've been dealing with the authorities/hospitals for the past 10 months, it hasn't been easy and my experience with ALL of them have been nothing but bad unfortunately. Very few have actually helped me, and others have helped only when I've taken such drastic measures. But like I said, when I "flip out," I do it with intelligence, evidence, and knowledge, not from a dramatic character. I think it's important to emphasize this in case anyone reading this assumes that I just do so out of uncontrollable outbursts or from a dramatic point of view. No, not at all! I know my rights, I have studied the system, I have done my reading, and if I'm in the right, I do what I have to do to prove it, even if it means going beyond my comfort zone and nature. One thing that I can't stand, is getting screwed over.

So, over the past year I've had a LOT of experience with authorities. I've come to learn a LOT.

A) No one knows anything about anything.

B) Their favorite excuses are "I don't know," "That's not my job," "I can't help you," "You must have misunderstood," and "YOU have to do it!"

C) Often you will find that they DO know, it IS their job, they CAN help you, I HAVEN'T misunderstood, and technically, THEY should be doing it, NOT ME!!!

So the question is, how do you deal with this? 

Let me begin by saying that I have tried everything from heaven to earth, being nice, sweet, polite, accomodating, understanding, inquisitive, scepticism, and even dumbing myself down to observe their reactions. I have come to the conclusion from a lot of trial and errors, that none of these techniques work. There are however, a few very useful and powerful technique that DO work, namely, THREATENING them, patronizing them, disrespecting them, and demanding my right.

Threatening them: This is by far the most effective technique. You basically tell them that if they do not do their job, or get me the right information, or deal with my case immedietely, that I will report them to their boss, go to the media, put their job on the line, or anything that will basically put fire up their ASS. This is a brutal method, one that enrages me. Why do I have to threaten? Well, when ALL ELSE FAILS, when you lose your patience, and when you are ready to expload, trust me, this is the way to go about it!!! 

Patronizing them: this makes them feel insecure. They then feel the inevitble need to prove that they CAN do their job. So, they actually put their coffee mug down and start working. Yes, it's horrible as this is actually one of my pet peeves. But apparently, when patronizing their reaction is to defend themselves. They know that a mistake has been made, so they do all they can to prove otherwise, hence the job gets done. It's like a chain reaction. Chemistry!

Disrespecting them: they leave me no choice unfortunately. This is often a provoced reaction. They tell me I have misunderstood, they tell me that I have to do all the work, they tell me that they can't do anything. This boils my blood. I lose my patience, understanding, compassion, and sympathy...and flip out. Are they not disrespecting ME by not dealing with my case? Are they not disrespecting the fundings that their organization gets to deal with this by not doing their jobs? Are they not disrespecting people who really DO need help? Their passitivity and lack of competence is an indirect disrespect towards the people. Unfortunately, they deserve nothing less. Trust me, respecting them DOES NOT WORK...it just gives them more fuel to fail at their jobs.

Demanding my right: Often you will find that they think the person on the other side of the phone has no clue about anything. Until the wrong person comes along (AKA ME) and DOES know what I'm talking about. I know how to argue, I know my rights, and I know what I'm entitled to. When they start messing about and entice confusion, I stand my ground and start rambling up legal documents stating what my rights are. They then have no means to argue with me because, guess what...THEY CAN'T ARGUE AGAINST THEIR OWN REGULATIONS!!! 

And guess what? Everytime I've used these techniques, everything has resolved itself within a matter of hours, sometimes minutes. Why? Because, the brutal truth is that this is the only way to deal with them. They are so use to the passive citizen, when a non-passive one comes along with shit in her brains and does know what she's talking about, they shit themselves and react. 

I had to demand to talk to one of the heads of Försäkringskassan today on the phone. Let me just say that it was a very nasty and ugly phone call. I was shaking of frustration and anger. At first she resisted but when I then used the "threatening" technique saying that I would call the media in ONE minute and reveal her name...she backed down and told me she would fix EVERYTHING!!! Who would have thought that exactly 30minutes later, the lady from försäkringskassan in Örebro called me and told me that she too would fix all my documents for my Örebro case. They would send all the papers to the right places (they gave me a LOT OF WRONG INFORMATION...A LOT!!!) They would call my job and deal with it. They would fix all my papers, and they would do so by the end of this week. I took all their names, phone numbers and told them that if I didn't have everything sorted by Friday, that what they would definitly hear their names in the news on MONDAY MORNING!!!! It worked. Problem solved. 

It's horrible really that I have to take such drastic measures for people to do their jobs. It's horrible because it makes me realize that there are so many people who do not dare do what I do, who do not dare fight with authorities, who do not want to start a war with them, because they're scared...but it's not necessarily fear that's the problem...it's that people don't know their RIGHTS!!! These processes shouldn't take that long, they shouldn't drag out forever, you should get the right information, you should get all the help you can. When you're on sick leave, or for any other reason need to be in touch with these people, the information should be THERE...you shouldn't have to spend your entire days making phone calls, or searching a bunch of information. I don't like to use these drastic measures, but they seem to be the only techniques that work. At least for ME!

Over and fucking OUT!!!!

So, I've had quite the busy morning. And seeing as my patience runs low when sitting and waiting on the phone for authorities to get off their coffee break, I try to do other things while I'm waiting. For instance, I tend to send e-mails in the meantime, or read the news to update myself about what's going on in the world :)

I even had time to make a nifty little dish, take a shower in the meantime (second one for the day, the dog jumped on me with his dirty paws) and, dress up. All this within the space of 60 minutes. Nothing better than multitasking ;) 

So here's what I cooked, it took 20minutes to make, and 30 minutes in the oven. It's a very simple dish. I'm not suppose to consume too many carbs, preferable as little as possible (medical reasons) so here's a nice dish that's healthy, flexible for vegetarians, and delicious. The dish is off the top of my head. I didn't follow any cook book or recipies.

you.chose.the.wrong.person.to.tick.off.

/H

Just got the post and a letter from my doctor. Wow...he concluded that it can take a year until I go into complete remission. Of course I will start going into remission before then, but just putting it in words...one year. But whatever...I'm not going to define my health according to a rapport. I'm taking it one day at a time, and focusing on healing my body every single day. Just like a to-do list, do it, tick it off, and before you know it, you're done. So, let's just see healing as that...a to-do list haha.

So here's my date: 22nd of September, 2012, I should have already gone into complete remission. That's my date and I'm sticking with it (well, for now at least haha.)

/H

I've always liked Mondays. It's the beginning of a new week, fresh start to everything, and new energy to invest in things. I started my morning with a nice breakfast and a cup of coffee. Made a lot of phone calls (surprise surprise) and congradulated my lovely and dear friend, Nattis on her birthday. HAPPY BIRTHDAY...AGAIN ;)

So, things are going a bit slow with the processing of my admin work that needs to be sorted. Basically, I might be without money for a while because of beauracratic procedures. On top of that I've spent like a great portion on money on expenses that should have been covered by them. So, when I get money I hope it will be a nice retroactive sum, but until then...I'm a bit broke and I don't want to touch my savings (although I've had to take quite the dip into that too.) Ah the joy's of money. But whatever, I've been a poor ass student, it sucks but what the hell? Money isn't everything and I'm living at home at the moment so expenses are not too bad. 

Update: Aaaaaaand I just got a beautiful phonecall from my Social Insurance Welfare Office telling me that I cannot get money back on some of the taxi trips I've been taking because of my hip which I am technically entitled to. So, I asked her to tell her boss to call me back immediely. I also told her that I would be sitting by the phone like a guard dog waiting for this phone call. I'm sick and tired of authorities. They will do anything...ANYTHING to get away from doing work...ANYTHING!!! Fine, if you don't want to do work, let's talk to your boss who is responsible for you and we'll see what they think about that. And if it means taking a tough tone with them so be it. I'm not going to be pushed over for ANYTHING!!!

And let's end this input with a piece of advice. Don't EVER take NO for an answer. That's what THEY want. And don't ever let them confuse you, it's such a sneaky trick that they use to get YOU confused. Follow a red thread and STICK WITH IT!!!

/H

I've come to realize that when I sleep at my parents place that I always sleep so much better. OK fair enough, I wake up a few times throughout the night, but nowhere near as much as I do when I sleep in say, Örebro. I remember having this conversation with a colleague of mine and he said that it could be the energy in my bedroom. Maybe moving my bed just one meter to the right or left could make difference in the energy flow passing through the room. Or maybe, I've just always been use to having my bed up against a wall all my life, but in Örebro, it's the center peice of the room, hence the weird sleeping patterns. My sleeping patterns are also sensitive to day light. When the seasons change...I'm a gonner. I can't sleep properly, I wake up ALL the time and I just don't get the rest I need. I've never been much of a sleeper so you can imagine that the little sleep I do get, is precious. 

Maybe I need to move my bed a bit when I move back? Or maybe I need to just rearrange things in my room. I know that the color blue has always out me at ease, hence why my room is shockingly BLUE haha. Blues, reds, purples, and colors in warmer tones have always brought me more ease, mentally that is. That's why my entire apartment is splashed with these colors. But like I said, maybe the problem is in the position of certain objects rather than the colors they posess. 

Hmmm...thinker...thinking....thinking...still thinking...need to read more about it. I'm convinced that these things have an effect on one's mental well-being. If anyone has any tips I'd be more than willing to read more about it ;)

/H

So I spent all of yesterday and most of today at the hospital. Yesterday as mentioned to check the pain in my arm and today to discuss my treatment so far and check my blood levels. I had a nice long chat with the doctor which made me happy. It's just such a contrast to have a doctor that sits down and listens to me and answers ALL my questions as many as they may be. No stress, no frowns, no patronizing, just us...talking...about ME. He's amazing to tell you the truth. Everytime I have the smallest request he attends to it immediately. I was talking to him about my neurotic concern about weight gain and he immediately referred me to a dietition. The same when I asked him before about exercizing, he immediately referred me to a physiotherapist. I'm just not use to this, especially with the bad experience I had in Örebro. It's like heaven and earth...here...I'm in heaven. Who would have thought? I'm doing chemo and I'm in heaven haha.

So far my blood values are A OK! I'm reacting the way I should be to the chemo. Immune system on the decline - check! No diabetes in sight - check (woohoo!!!) And so on and so on...

Tomorrow is my third date with Mr. Chemo. I wonder what he has up his sleeve this time? Maybe a three course meal? A romantic walk by the bridge overlooking the city? Or maybe a surprise shopping spree? HAHA! Yes I have a very wild fantasy...although according to Einstein, creativity is the source of genius...hehe. All jokes aside, I can't believe three weeks have gone since I first started dating Mr. Chemo. Somehow time has gone so slowly...in other ways...time just flew by.

Fantastic NEWS: I finished ALL my admin work for my social insurance and applications for transport assistance. Everything is sent and all I have to do is WAIT!!!! It took....toooooooo...LOOOOONG!!!!

Enough!

/H

I spent my entire day at the hospital today. I was told to come in after complaining about my arm. They suspected that either I had a blood clot or that the area where they inject my chemo hit some nerve that was acting up. So, they did an ultrasound to exclude the blood clot theory. The doctor had a hard time finding my veins and vessles because they're so thin and tiny. But the good news is...NO BLOOD CLOTS!!! Don't ask me why I'd have one but apparently the symptoms could resemle that of a blood clot. But he did put me on some warning list so that if I experience this pain again in the near future, I'd go straight to emergency and be prioritized. 

I have another appointment with me doctor tomorrow for a check-up. We're going to do a full blood count to see how Mr. Chemo is treating me on our weekly rendevouz. Then Thursday I have my third chemo date. 

Right now, I'm in pain. Everwhere. My stomach, my hip, my mind, my arm, my everything. And I feel like the Michelin man. And I'm butched ("bushed" for the regular people out there who chose to use our mainstream English to communicate.)

I'm exhausted.