SLIDER

I don't want to die...

Saturday, January 10, 2015
I have had a bit of a tough week. I was hesitant about writing this blog, but when deciding to start Dear Melanoma I promised myself that I would be 100% honest. My cancer journey would be an open book to anyone that wanted to be part of it - the highs, the lows and the in-betweens.

For those of you that follow the Dear Melanoma FacebookPage, you would know that I had my six weekly scans last week. I was extremely anxious going into this scan because it fell exactly one year after the scans that told me I only had months to live. I was feeling a little bit superstitious.

When it comes to my scans my fears have shifted. I am not in fear that my cancer has started to grow and spread again, because I can physically feel certain tumours and can be relatively confident going into scans. But, instead I fear the word ‘stable’.

The word ‘stable’ in someone’s cancer story should be positive, however with this word my hope begins to disappear.

Over the last six months you have probably picked up on the fact that I am very realistic about my prognosis. The reality is that I have Stage 4 Melanoma. I have terminal cancer. I have never been promised a cure, but instead time. I know that the only thing I can hope for is time. This isn’t me being negative, it is accepting the facts and doing the best I can with the reality I have.

I have written about my fear of leaving a widow behind, the dignity I hope to die with, the importance of photos in keeping my memory alive, and the plans I have made for my death.

But, I have never spoken to you about the fact that quite simply, I don’t want to die. I am not ready to die.

There is not a day that goes by that I don’t ask ‘why me?’

I would happily give up everything that I hoped for my future just to be able to grow old. I don’t need to have children. I don’t need to have a career. I just need to be alive.

So, although I have been realistic and know melanoma is going to take my life, probably sooner rather than later, there is a little part of me that has held on to the hope that I fall in the small percentage of people that have gone into remission.

The last three scans I have been told my disease has been stable. I remember the first time I was told this I spoke to my support team at the hospital about my hope that I hadn’t plateaued. Two scans later, it seems that I have plateaued. This may be as far as this treatment can take me. I may be stable for months, or even years, but my hope of it taking me to remission is minuscule.

I have felt really embarrassed this week about being so down about my scan results. I should be celebrating, but instead I have been the most upset I have been in months. When talking to my oncologist about my results, she reflected on how far we have come in a year. No one thought that I would still be here. But then the conversation shifted to speaking about what happens when my two years on this trial comes to an end. The ‘if’ word comes into the conversation. ‘If’ I make it another year. And just how amazing it would be if I am still alive.

This conversation brings me back to reality. I am dying. The average results for this drug shows that it only buys it’s patients 22 months. I probably won’t see another year.

I may be prepared for my death, but I am definitely not ok with dying. I am not ready to die. But, will I ever be ready to die?

This week I hope to pick myself up again and just keep on plodding along.


Tickets are still available for the Through The Looking Glass a cocktail party you won't forget! All funds raised will go to melanoma research. 

http://brisbanetickets.com.au/event?id=853





11 comments :

  1. Thank you so much for sharing your story and writing such inspirational words of wisdom! You are an angel and are helping so many people get through this horrible disease. God Bless you!

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  2. I hope this doesn't offend. Have you considered Gerson therapy? www.gerson.org

    https://gerson.org/gerpress/tag/melanoma/

    Jess Ainscough is an Aussie lady with terminal cancer who has gone through the treatment with success and blogged about it http://www.jessainscough.com/?s=gerson

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    Replies
    1. Jess Ainscough's experience with Gerson could hardly be described as a success. Unless you describe success as being a shadow of your former self with tumors erupting through the skin and bleeding from your armpit continuously. I'm sure it's a hard thing to accept that several years of giving herself coffee enemas had zero impact on the progression of her disease, but even she appears to be admitting that she has lost the fight and is now under the care of a conventional oncologist.

      Please refrain from attempting to lead anyone else down her very misguided path.

      Delete
  3. Emma, I have only just found your blog and am beginning to read your story. I feel compelled to write a short message of thanks to you. Thanks for being honest, thanks for sharing your stories and hopes, thanks for being such a great writer and supporter of other people's cancer journeys, thanks for your support and fundraising efforts in the hope to give more time to others, thanks for being you. I wish I could offer you more than just these words. I wish you all the best and hope you are the first of many for whom this treatment lasts waaaay beyond the first 22 months... X

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  4. Oh sweetheart ... I too have just found your blog, and what an amazing woman you are! Thats a powerful post, it must have been *beyond* tough to write it. Thank you, though, for doing it.

    I'm struggling right now with my place in the world, and your honesty and clearness here are really, really helpful.

    Thanks again.

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  5. Dear Emma please read www.sharkyandwillow.wordpress.com it is inspirational.
    My daughter was in the same position as you. It may give you strength to know that your bravery and honesty will really help those left behind. I know, I am that person and I appreciate every single moment alive xx love Carolyn

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  6. You are amazing Em. You have touched so many people, and no matter what, you have changed this world for the better, and that will live on forever. xx

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  7. These questions: why me? and "I am not ready to die" always come across my head too. Sometimes I live like I know I have to die soon, however without plans for the future you do not have present.When I have pain I really soon get into reality about where I stand now, but when I do not have any I forget about cancer and live like as I am a "normal" person. And it is a great feeling!
    In what trial are you in? What is the drug you take?

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  8. hi Emma, I've just found your blog and really enjoyed your writing style. My husband has just been diagnosed with Stage 4 melanoma which has already spread to his liver, brain & lungs. We are waiting on tests to determine if he is eligible for an experimental drug trial based on the BRAF mutation. I'm wondering if this is the same drug that you are on? We are based in Cape Town, South Africa. My email is lisa.storey@iafrica.com and I am on facebook under Lisa Fillis Storey. Thanks xx

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  9. Emma you are an inspiration and so enormously brave to not only face your fears but to share to help others. You're incredible. Thank you. Strength and love.
    Ax

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  10. Emma. Please look into a few resources filled with hope of people who have BEAT what you have! You will get a lot of negative comments to this post, but you check it out for yourself and YOU decide what is truth. Check out the book: Radical Remission -- examines terminal cancer patients who turned it around and scientifically examines the common factors! Another resource: Truth About Cancer Docu-series; http://www.chrisbeatcancer.com/prudence-healed-stage-4-melanoma-1984/
    Finally: http://cancercompassalternateroute.com/testimonials/malignant-melanoma-healed-with-natural-therapies/....there are THOUSANDS of people around the world who have beat all odds. Take a look for yourself. If your doctor is giving you less than 2 years to live with the current treatment, what do you have to lose to look into it and make a decision for yourself!

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Thank you so much for your comment. I really appreciate you taking the time to connect. Emma x

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