28 Week Update

Survivor guilt – Survivor, survivor’s, or survivor’s guilt or syndrome is a mental condition that occurs when a person perceives themselves to have done wrong by surviving a traumatic event when others did not.

This is how I feel some days, especially after I hear of a friend/loved one whose family member has died of cancer.  Especially brain cancer.  I shouldn’t feel guilty, I should feel happy that my father is doing so well, but I can’t help feeling guilt that others are going through such an emotional experience and I am not.  Granted I do know my time will come.  Glioblastoma doesn’t go away.  I know how it will end.  But I can’t help feeling a little guilty when someone asks me how my dad is doing when I know their loved one is not doing well.

My dad is doing well.  Amazingly well.  Like miracle well.  Now that I am typed that I am afraid I might have jinxed him.  His blood work is always within the limits.  He has had to up his potassium and his anti-seizure medication.  I don’t know the reasoning behind that because he has never had a seizure.  He is still doing chemo every 28 days for 5 days.  It makes him tired but no other side effects.  He has mentioned to me that his left foot is a little numb, (or maybe it is his right one), but it hasn’t affected his balance or ability to walk.  His next MRI is now not until December instead of the end of October.  He does still forget things, and has to ask my mom the answers to simple questions like what are we doing tomorrow. But he still has is sense of humor and he is still my dad. Which makes me very happy and very sad at the same time.  Every time I call him and he answers the phone “Heather Berry” (that is one of his nicknames for me) it makes me want to cry.  Someday he won’t answer the phone like that.  One day he won’t even be here to answer the phone.

Why can’t I just get past all of the inevitable and enjoy the now???  It is so hard.

My wedding is in 9 days.  My parents have been such a big help in all of it.  My dad is so excited about it all and that makes me happy.  He is the main reason we are doing it.  I have decided to have him walk me down the aisle.  I have been practicing listening to the song we are going to walk down to and trying not to cry.  Haven’t made it all the way through the song yet, but am getting better.  I want it to be a happy day, not a sad “my dad is going to die soon” day.  Gah I hate this….

On a side note, my thoughts and prayers are with my friend Desi and my new friend KS.  Desi’s dad passed away this past Sunday from cancer (not GBM, but from multiple myeloma, bone cancer), and KS’s mom passed away a few weeks ago from GBM.  My heart aches for both of you.  Wishing you peace and comfort right now and much love.

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5 thoughts on “28 Week Update

  1. Oh honey, as long as he still sounds and acts like your dad be happy. Take it all in. I’m really glad for you because he is still doing so well. And trust me, you don’t want him having a seizure, it’s scary as hell. For me, it was scarier than her having cancer at all. I gather he’s taking Temodal or whatever it’s called in the US, something like temozoliamid, dunno if I got that right. It’s the best thing so far to battle this shit. And it’s better than the other kind of chemo. Is he having side effects aside from nausea?

    Sometimes I’m afraid with everything I wrote about, that I kinda spoiled it for you, obviously not in a good way.

    I saw the pics of the place you’re getting married at. Looks really nice! Have a happy and great day. Gah, I can’t imagine what getting married is like but have a blast! Btw, do you have siblings?

    Not sure if it qualifies as surviver’s guilt but these days I’m not sad anymore, I’m happy because this huge burden was lifted from my shoulders and I’m happier than I’ve been in months even though I should be sad due to the loss.

    Take care, sending big hugs your way!

    • Yes, he is on the Temodar. No other side effects except the nausea. I don’t want to experience a seizure. I hope he never has one.

      You didn’t spoil anything for me. You helped me realize what to expect and watch for. I am trying to enjoy everyday with him and enjoy this time with him. It still sucks though. Still have that knot in the back of my mind of what is to come.

      Yes, I have a brother that is 26 and a sister that is 37. I live the closest to my parents and see them the most often. But we are a close family.
      The wedding will hopefully be beautiful and no snow or rain that day. It will be fun though to have all the family together. The museum will be gorgeous.

      I am glad you aren’t sad anymore and that you are happy again. I don’t think you need to be sad anymore. How long did you grieve over
      your mom before she died? A long time! It is time to be free from it all.

      Have a box ready to mail to you. I don’t know how long it will take to get there. But look for it in a few weeks.

      • I grieved for half a year even though she wasn’t gone yet, at least not physically.

        Nice that you have siblings and I’m sure your wedding day will be beautiful, without snow and as lovely as you hope it would be. Looking forward to pictures on your other blog 🙂

        Keep smiling and know that I’m here if you want/need to talk. You have my email too! Have a fantastic day, will be thing of you!!

  2. Maybe it’s better not to proclaim that “GBM doesn’t go away.” If you “know” how it will end, then perhaps you enable that outcome. My comment isn’t to ridicule you (because all of us affected by GBM are familiar with the grim statistics and have been in your scared place), but rather to encourage you to focus your passion, thoughts and energies on what you WANT to happen. The inevitable death of your other loved ones doesn’t prevent you from “enjoying the Now” right? Let your wedding be joy for you, your father, family and guests. You control your thoughts.

  3. You are totally right Ken. Positive thoughts would be better than focusing on the negative. I try so hard to do that, but sometimes it just catches me off guard and makes me feel sorry for myself. It’s like I told my dad awhile ago, we are all going to die eventually. We are lucky we know his time may be shorter and we can make the most of every moment with him. We should do that with all our loved ones, but for some reason we don’t. My dad’s cancer makes his mortality more real even though I could easily get struck by lightening and die way before my father does. Thanks for reminding me to enjoy the right now. I forget sometimes.

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