How much harder?

I’ve now had the 2d chemo 1 week ago. There is 1 week until Myrnas 8th birthday.

A lot of numbers. Trying to keep it up, constantly failing. It doesn’t matter if it’s a place I have put a key or something important. A bill that’s got to get paid. A meeting with someone. They all go. Disappear into distance as my tired vacuum of amnesia straps his cold fingers around my brain, slowly squeezing out any previous knowledge. 

I am truly frightened. This shouldn’t be happening. I should get tired, yes and apparently more so with every chemo I have, but Alzheimer? I honestly don’t know what to think. 

I came back to Mallorca on Wednesday, I managed to drive a car then and Thursday-Friday I went out for walks. Saturday (day 4 after chemo) I was in bed for the whole day. Sunday I managed 2 walks and also did a lot of sleeping. My lovely extra mini-me sister is here now, Jenny. She is riding and jumping my horses. Yesterday was the first day we managed to get up to the stable and she rode all 3. After the 2 hours in the stable I was done for. Totally whacked. It was like somebody had turned all my energy taps on and bled me dry.

I would like to tell you all that I become a lovely person when I’m tired/forgetful… Nothing could be further from the truth. I become a nasty/wengeful/angry/aggressive with absolutely no fuse. I am pure dynamite. In every bad unforseeable way. I just erupt like some vulcano, falling apart simultaneously. As little energy as I have I can hardly hop upstairs but boy can I lay into my family if they step out of line one millimeter.

There is no point in being regretful. I am sorry for losing it with them, but simultaneously I feel too tired to sort it out. I’m sure I feel it more than anyone else in my family, but i’st still not easy.

Today I feel a little bit better again. It’s only such small improvements that I in any other time would ignore them. If this gradual decline chemo by chemo promises goes at this rate I will be ready to put in a casket by august.

I’ve been told today that I always paint the worst possible case scenario. I can’t believe anyone would ever say that. I normally fish even the tiniest positive out of this sea of black tar ahead. I wasn’t allowed to bring everyone down by telling my dark unsettled self, bearing my darkness. I don’t often do. It’s only sometimes I let go and feel weighted, almost drowning, surely there must be a way out. Something to look forward to? 

In 2015 I don’t think there are that many light points. I feel so sorry for my children. They will remember my illness as a part of me. It couldn’t be further from who I naturally am. I am forever goal driven. And to put a goal driven person through this anti-goal challenge it’s like killing them. Proposefully, slicing me open,  one piece after the other. Dignity- gone, pride- gone, sanity- gone.

The horses jumped alright today. And hopefully by the end of the week I can ride again. Next week it is Myrnas birthday and if it follows the almost pattern of last time I had enough energy to be almost me. The only problem is that following that week comes chemo nr 3….

Behind enemy lines. Inside my own skin.

Keep smiling 🙂 it can’t hurt! If the Altzheimer is for real it won’t really matter soon anyway.

12 thoughts on “How much harder?

  1. Everybody has the right to feel down now and then and especially you.You know that.The chemo is also the hardest part of your treatment as far as I understand.Remember there is also a strength in anger (although not so easily understood by others admittedly )Kisses maman

  2. Du och mÄla fan pÄ vÀggen funkar inte i samma mening. Du om nÄgon tar reda pÄ fakta och information och gör det bÀsta av det. Och man fÄr kÀnna. BÄde rÀdsla och ilska. Du har ett fantastiskt sÀtt att tackla detta, Emelie! Vilket Àr till stor tröst för oss omkring dig. Kör ditt race pÄ det sÀtt som kÀnns bra för dig.

    Hoppas att du Àr tillrÀckligt pigg för att orka med oss en stund pÄ lördag <3

  3. Underbara toka, va inte för hÄrd mot dig sjÀlv..
    Det bĂ€sta med att kĂ€nna sig som ett utskitet Ă€ppelskrutt Ă€r att man kan bara mĂ„ bĂ€ttre 🙂

    Massa styrkekramar!

  4. emelie, I am full of admiration for your intimate honesty in your writing. Thank you for sharing this with us. So many of us shy away from our feelings. You don’t. And that will help pull you through this ghastly disease. Sending you love and many thoughts in this week after Easter. Claire x

  5. Hua! LÄter inte roligt. Massor av kramar till dig och hela din kropp sÄ att den kan ÄterhÀmta sig snabbt.

  6. Dear Emily, it sounds like someone forgot to keep the light on in this dark tunnel…
    Oh yes, there is light, there are goals, every moment matters. Easily said from outside. But we know you are getting there!!! You can be very proud of the goals you achieved so far on this “adios-cancer-trip”. In nature everything moves – even if nobody pushes hard. You are much more than the tired, angry, sick Emily!!! There may be some clouds right now. But the sun is out soon again!!! Lots of love , Gesine

  7. Oh Emelie this sounds very hard. Hopefully by today you are now feeling a bit stronger. And you know, your little Kiddie-Winkies and Dan love you to bits and can deal with a passing cloud. They may take cover but they will always come out when the sun shines. Dix

  8. Emilie, I have never met you but I have been following your blog since meeting your Mum in Hampshire last month. I have a daughter thr same age as you with 4 little boys, and she has been through so much with them health wise. Sometimes it all gets her down, but she keeps going. As with you, life is sometimes so unfair and the same lovely people keep on getting hit over and over again.
    I just want to say to you, allow yourself to be angry. Allow yourself to rage at the world, and at your family. It is a natural part of life. Allow yourself to be scared sometimes. And don’t ever feel guilty that you cannot cope right now. Your family will understand. Children have such short memories and in a while from now, when you are back to full health, they will forget about all this and move on to the next thing.
    So be very kind to yourself. Love yourself, even your angry self. Especially your angry aggressive self. You have every right to feel angry and frustrated. Maybe next time you feel your vulcano erupting, lock yourself in a room and scream at the walls. Very therapeutic.
    Sending you all the positive loving energy I can muster.
    Marguerite X

  9. Dear Emilie, we’re so sorry to hear what you’ve been through since we last saw you last year, when you were so actively involved in the Halloween preparations. Feels like another curve ball life throws at you, at a time you really could do without it.
    When you spoke about goals in life, it made me realise, that when we’re healthy we all have so many things we want to achieve and prioritise in our busy lives, but when an illness comes along, there’s really one goal – to get better!
    As Marguerite so eloquently put it in her comment, life can be random and unfair. (think I’m quoting a Dutch comedian).
    Hope you’re able to take it a day at the time and don’t be too hard on yourself. I’m sure your wonderful family loves you regardless.
    We’re back in lovely Mallorca in July, and promised the boys you’d be riding, so better be on that horse, missus! You’re in our thoughts and sending positive vibes across the pond. Pleased to see you’re also supporting the Horns – much excitement in our household…..! Much love, James, Eline & crew

  10. Hi Emelie,
    Just a brief message that we are thinking of you, and appreciate that we can follow developments through the web without disturbing.
    What a darned bad luck in this recent period of your life. But it is very simple: You are way too tough to be defeated, and additionally have Dan along your side to help pull you through, so look forward seeing you up and running again after these chemo sessions. So many examples of people coming out of a crisis stronger..
    Love,
    Cati & Aart

Leave a Reply

Your email address will not be published. Required fields are marked *