Sylicious' Braindumps

….On the road with a brain tumor

114 I want my wife back!

Written By: Peter - Nov• 28•13

Things are reasonably steady. In the morning Syl is washed by someone from home care (I assist her) and in the afternoon and evening someone from home care comes by to do things that need to be done (cleaning e.g.). The washing part is painful, so I give Syl a little bit of morphine one hour prior to the washing and that helps. She also has an adhesive plaster with morphine that gives her a continuous dosage of morphine.

Almost every day we receive cards, this week even another beautiful bouquet of flowers (thank you very much, José!) and regularly family and friends drop by.

Syl is pretty tired, so a large part of the world around her passes her by without really knowing (she sleeps a lot), but when she is awake, she is reasonably aware of her surroundings and most of the time also who is in front of her. Although sometimes she mixes up people. Having a ‘normal’ conversation with Syl, as we were used to have, is too complex for her. She understands reasonably well what is said, but when it comes to participating in the conversation, or answering questions…that’s usually sheer impossible. Questions that need her answer, need to be as simple as possible and one at the time. Eating is still something she does well (although I need to help her with that), but chewing and swallowing is still fully functioning and her taste is very well in tact (thank God for that!). So she’s enjoying food very much so.

Having said all that, I can’t but face the fact she is slowly slipping through my fingers and that hurts. A lot. I think the best way to describe how I feel, is as if I am waiting for surgery to get a body part amputated. One would want the waiting to be over, but then again, who would want a body part amputated? It feels like choosing between two bad situations. And I don’t even HAVE a choice. It’s just freaking hard; that’s what it is.


So what I do, is try to focus on the good things: Syl’s still here, able to enjoy some things on a daily basis. She’s not in real pain. I am still able to take care of her, now helped by many kind and capable people. We both sleep well and I am on a daily basis in awe how brave Syl is coping with the whole darn situation. And that helps. A bit. But the bottom line is: I want my wife back! But I can’t. And there is nothing I can do about it 🙁

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  1. Lurelei says:

    ‘It’s just freaking hard; that’s what it is.’

    It is. I’m so sorry. Not that that’s of any help, but I truly am.

  2. Lure007 says:

    Dearest Syl,

    I ask Peter to bring you this message from me. Even though by the time I discovered the wonderful gift of your writing you were already out-of-commission (so to speak) and unable to respond to comments, I’d like you to know how much sharing your love of LuRe meant to me.

    I happened to discover their story and, subsequently, your website, whilst battling a serious medical condition of my own. It lifted me up in so many ways, and in the midst of all the chaos and uncertainly that surrounded me back then, managed to provide this sense of security knowing that you were “there” every weekday, like clockwork. I remember thinking that one day I’d like to be able to articulate though the written word as well as you… I’m still working towards that!

    It’s hard to sometimes make sense of a curve-ball life throws your way that you have no choice but to face head on. And, even though I struggled with it at times, this intrinsic notion of inter-connectedness kept me from falling apart completely. There is a piece by Kahlil Gibran “On Pain” that I found particularly powerful. When I read the line —“Your pain is the breaking of the shell that encloses your understanding” – I recall a shift taking place within me, and it reinforced the understanding that the suffering I was experiencing had some purpose, even if unknown.

    Please know that my thoughts never stray very far from you and Peter.

    Thank you for all the positive energy you bestowed through the written word. I can only hope this message does the same for you both.

    Rids (Lure007) x

  3. patyno says:

    The hardest thing in the world is to watch someone you love die. There is nothing you can do but give love & pain medicine. Its the worst. Please know that you both are in my thoughts & prayers. Please let Syl know that her soap is brilliant & I have read it completely many times over. She gave us a brilliant soap. Thank her for me.

  4. philly says:

    I have no words for how sorry I am.
    All the love for both of you!

  5. Anita says:

    Lieve Syl,

    Ik wil je even laten weten dat ik heel erg veel van je soap heb genoten en nog steeds geniet, want ik blijf alsmaar opnieuw lezen. Het is de mooiste soap ooit!!
    Heel erg veel dank hiervoor.
    Ik vind het heel erg, dat je zo ziek bent geworden.
    En ik heb enorm veel bewondering en respect voor de manier
    waarop jij en Peter daarmee omgaan.
    Ik wens jullie heel veel sterkte toe, en al ken ik jullie niet persoonlijk, jullie hebben een speciaal plekje in mijn hart.
    Heel veel liefs voor jullie beiden,


    • Peter says:

      Beste Anita,

      Dank je wel voor je lieve bericht!
      Ik heb het Syl voorgelezen en zo te merken begreep ze het en ze liet weten dat ze het heel fijn vond om te horen.
      Ook ik vind het fijn om die steun voor haar en haar werk te lezen; maakt me nog trotser!
      Dank je wel ook voor je bewondering en respect. Dat horen we vaak, dus het moet wel bijzonder zijn wat wij doen. Voor ons voelt het niet anders als normaal; we doen namelijk alleen maar wat voor ons werkt en dat is dit.

      Dank je wel voor het uitspreken van je waardering; dat waarderen wij weer! <3

      Lieve groetjes,
      Peter (ongetwijfeld ook namens Syl)

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