What the other doctor said

I went to see another oncologist on Saturday.  He looked at my previous head scan and thinks that possibly they missed my first tumour.  The one u can see biggest in the picture. But I guess its had since October to grow.

He recommended stereotactic radiotherapy which targets the tumours rather than the whole brain.  He needs to get in touch with a doctor in Germany and let me know.

I havent started treatment yet.  I went to Nicosia today to get my head measured for a mask but the attending doctor didn’t see the point if I have not yet decided if I am going to Germany (if the government will fund it). He also said that for more than 4 brain tumours they dont give stereotactic brain therapy, and that my CT scan doesnt give a really clear image of my brain and I can have 10 tumours now, not 7 to which I replied “jeez thanks very much”.  So I didnt leave there too happy.

The bus journey back was tiring and made me queezy.  But I went and got some sushi, and a plate of chips to take away.  I never thought i’d see the day Id like Suhsi. Christian ate some chips then after a short nap proceeded to throw up all over me, the couch and the floor. So the cat ate chips too.. gross.

I feel so hopeless.  Every day I wake up and I think, shit I have terminal cancer.  I try to fight it and I scream and I say I am stronger than you melanoma, you wont beat me. I will win. I will be victorious.  The drugs make me a little woozy so sometimes I don’t know if I am coming or going.  Thats quite frustrating.  Every day is a struggle and hard to get on with it.

I wish I could just go to sleep, and wake up when it’s all better.  I want to start treatment so then I am actually fighting. Right now I feel like I’m just sitting doing nothing.

So Wednesday I go back to Nicosia, if I don’t get the Germany option and start full head brain radiotherapy for 5 days.  This will result in complete hair loss and other shite side effects which I’ve been reading up on. So I just want the tumours to vanish and I can get on with my life.  I guess next time I get a headache, I’ll be a bit more paranoid.

Thank you for all your comments and best wishes. They do help and are very appreciated.

I’m fighting, I am winning, I am alive and its my right to be. 🙂

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11 Comments (+add yours?)

  1. Marsha
    Jan 24, 2011 @ 23:38:39

    I’ve heard of people having SRS or Gamma knife treatment with more than 4 tumours, hun. WBT is a bit like using a hammer to smash a nut, but better than doing nothing. I bet you just wish they’d get moving!

    Thinking of you xxxxx

    Reply

  2. Mandy
    Jan 25, 2011 @ 00:33:25

    Hi Alethea
    I know you from Cyprus Living, and just wanted to say how much i admire you. you are a wonderfully gifted writer, your writing is poignant brave and funny, and allows us to get a glimpse of your struggle.
    you are a fabulously brave inspirational and courageous lady and I am rooting for you and sending you love and hugs
    Mandyxxx

    Reply

  3. Lesley & kev
    Jan 25, 2011 @ 09:50:32

    Hi Alethea, Adam and Christian and all your family, I just had to say all of your army will fight the good fight, we are your army and we fight to win, kev will leave his own blog later!
    We were waiting until last week to see if kevs cancer had spread from the prostate, it hasn’t, its the waiting and nothing being done, its itchy bum syndrome you want to scratch it, make it better and move on with your life.
    BIG SUPPORT HUGS AND LOVE, from one of your soldiers, Lesley xx
    p.s dont forget all you men get your psa level checked

    Reply

  4. Zhanna P. Rader
    Jan 25, 2011 @ 11:48:08

    Alethea, from what I know, no brain tumor must be bigger than 3 mm (or, maybe, 3.5 mm) in diameter for the Gamma Knife procedure. I hope you do not have any one of them bigger than that. And, indeed, if there are several tumors, the Gamma Knife procedure is difficult to do. They first have to screw up a special “helmet” into your skin to keep the head steady. I do not know, though, if they have to do it separately for each tumor. I hope not, for that part is a bit painful. The rest is easy. Also, it depends on where exactly the tumors are located. If any of them are located at a place where radiation can do some damage to other parts of the head or face (like eyes), then doctors cannot do Gamma Knife. However, your doctors know all that and much more than I do, and they should recommend you the most effective treatment. Indeed, Germany is one of the leading countries in performing Gamma Knife “surgeries”. Still, the Germans have to tell you if they would do that for you, and I hope they can reply immediately and set the procedure as fast as possible. And, of course, first you need to find out if the government will pay for the trip and the procedure. I am rooting for you. The best of luck to you. Yes, you can and will get rid of the tumors one way or another.
    With all my love,
    Zhanna

    Reply

  5. Patricia
    Jan 25, 2011 @ 12:07:06

    Your kids need you, someone from Melanoma International Foundation told me about you:

    1) go to a country where you can get her brain mets treated with gammy knife surgery, less side effect that whole brain radiation (in Brussels we have this technology, I am sure in Germany too) – as a European citizen you have the right to travel to another European country if your country cannot offer you treatment (this involves getting a E112 form to get this treatment as a European citizen! European Cancer Patient Coalition can help if this is a problem, your health insurance needs to provide this form so that you can get treated in another country, your oncologist needs to write to them, you will have to pay for the travel and lodging but not for the treatments)

    2) Once you get the brain tumours treated and stable

    a. if your tumors express BRAF mutation you could try to get into a trial that has the GSK anti-BRAF as it has show activity with brain metastasis

    · http://clinicaltrials.gov/ct2/show/NCT01153763?term=GSK2118436&recr=Open&cntry1=EU%3AIT&rank=1 (available in germany, Italy and France) In France I would see Dr Caroline Robert (an appointment can be made with her assistant Paquita.LANNES@igr.fr); In Italy I would contact aromanini@alice.it and ask her what would be the best center (Antonella Romanini); In germany I do not know anyone….

    · inquire with this doctors and the company about this trial http://clinicaltrials.gov/ct2/show/NCT01266967?term=melanoma+brain+tumors&recr=Open&rank=6

    b. One immediate tretament you could access once the brain mets are treated is IPILIMUMAB compassionate trial (again we have this in Brussels but I am sure some german centers have this too!), this immunotherapy has shown brain met activity….

    3) There are many patients (as we see on the MIF forum that have had the brain tumours treated and who have gone on to respond to other therapies and are still here…)

    Best of Luck

    Reply

  6. melanie lackenby allerton
    Jan 25, 2011 @ 12:54:03

    My great friend, always in my thoughts X

    Reply

  7. Sharon Edmundson
    Jan 27, 2011 @ 10:09:20

    Thinking of you and your family, keep fighting gal..keep smiling…you WILL BE VICTORIOUS, inspiring blogs and agree you are a talented writer. I,m sure you have already but check out the Macmillan ws it may give you strength after the chips n sushi…..xxxxxxx

    Reply

  8. Jess
    Jan 27, 2011 @ 17:23:06

    I second the recommendations made by Patricia. I’m glad she posted as I had been meaning to but she’s actually much more knowledgeable than I! Good luck with whatever you decide. We wish you all a complete recovery!

    Reply

  9. Nyree
    Jan 27, 2011 @ 19:01:01

    Dearest Alethea,

    I work with Adam & he told me about your daily blogs so here I am reading your heartfelt & honest words, I have to say that you are a true inspiration to me personally, your strength amazes me & really puts my life into perspective…..you will be in my daily prayers,,,never let your strong faith waver, God bless xxx

    Lots of love,
    Nyree

    Reply

  10. Jo King
    Jan 27, 2011 @ 19:07:24

    Hi Alethea just wanted to let you know that we are thinking of you, you are an amazing, courageous and remarkable woman, I will do everything I can to publicise your appeal and have my thinking cap on how I can contribute. Be strong and beautiful I wish I could take it away Jo & Steve xxxxxxxxxxx

    Reply

  11. Mark & Nicky Kirby
    Jan 28, 2011 @ 12:14:01

    Alethea

    we have our differences but this and you are more important. Keep up the good fight girl! We’re all thinking of you and your family and just want to wish you all the very best for a full and speedy recovery.

    Good Luck

    Reply

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