Metastatic Angiosarcoma Anyone?

Hey! Let me take you back to the beginning. I was diagnosed with Primary Angiosarcoma of the breast in June 2014 after being sent from pillar to post as not many could identify it or had ever seen it. It is a rare, aggressive cancer of the lining of my blood vessels and  took 8 months to diagnose. I underwent right-sided mastectomy, 6 cycles of Doxorubicin and Ifosfamide chemotherapy, and intense radiotherapy to chest wall over 6 weeks.

Then in June 2015 Gamma Knife surgery for solitary metastasis (means a spread) in the left temporal lobe of my brain and then Jan 2016, radiotherapy for metastasis to pelvis and femur bones. I now have new symptoms on my right cheek. Yes, it wants to party in my face! Following this, it moves to my lungs, back of right shoulder, left breast. This calls for 2nd round chemotherapy, Paclitaxel, for another 6 cycles, another 6 months.

Come start of 2017, 3rd round chemotherapy – Gemcitabine- for another 6 cycles.  HOW AM I STILL ALIVE?!?? It’s all about survival instinct, a sum of cycles and a little bit of ‘luck’.

Unsurprisingly this road has taken a little turn or that this road has been turning for a while but it’s only just occurring to me. I look back at the last few years and am grateful to my body for continuing to carry me through the years albeit a little more cautious and ever more curious than before; but still stands me in good stead to stick a leg out! Trust me, it still could still be a lot worse. I am one of the lucky ones. There is some part of me that cannot quite fully grasp the realism of it all. They say your body is your temple, I’m re-learning mine.

Surfing the treatments you are carried by a huge support network. Your doctors, nurses, advisors, friends, family are your advocates and they fight your corner, wrap you up in cotton wool- protect you at best, from the incoming storm. I was carried by a positive force, driven in myself, spurred on by the gears of my loved ones – and then it stopped. And everything crumbled. I was left standing, caught in the crosswind which stood me up, tentatively like a new born trying to find its feet. And then it hit me in ways I could never have pre-empted, I felt scared and sad and grieved for everything I had lost. No person should feel like an island – treading unchartered waters. But I felt alone, alone in my thoughts, and no way of escaping them. The only way I can describe it is heartbroken. When you’ve known and understood what you had, the sense of loss is greater. I miss my old body, the ‘healthy’ me.

This Sarcoma is a real sneaky little cancer and is putting up a real fight and has some real super powers to disappear and reappear suddenly packing a punch. But this is just the start of the rest of my life and weirdly the further in, the more time passes, the more determined I am becoming .  I’ve learnt not to underestimate the human body and spirit when it is put in survival mode and what your own body can actually do. So, I am trying to look after mine (despite intermittently pumping it with toxic drugs and body-altering medications), in the hope that it’ll follow in my mind-set and carry me through.

What’s the story of this pen, if it’s written without an end? For me, the bell dongs end of another round, I’ll live to fight another battle. Until and if we meet again, good riddance dear microbes!

10 thoughts on “Metastatic Angiosarcoma Anyone?

  1. I read your words and know that I can’t begin to understand what you are feeling and what your battles must be like, but nonetheless your words are filled with wisdom and perspective and they move me. You are a gentle, strong and special woman Henrianna.


    1. Thank you my lovely! I’ve been trying to work out why I’m supposed to be going through this and what I’m supposed to be doing with it. I figure if I lay it out all bare, then I don’t need to keep it. Better then it eating me up from the inside. Hope all is well with you xx


  2. You’re a tough cookie. You sound like you’ve been through a lot. I’ve only been diagnosed recently and I’m learning so much from being in this unenviable position. I want to learn as much as I can from AS and get better. I hope that you find a way to crack it and get back to the healthy you.


  3. I’ve read your blog, and you have really touched my heart, with your strong will, and positive outlook to life. You are a very strong person, and I hope you will find the healthy you.
    washing you all the best.


  4. Every day that I see you, I adore you more. I never see you without a smile, let alone never seeing a tear in your eye. You inspire me every day to be that better person, and to know what I do is a good thing… Your blog is a wonderful thing to read and shared with the world… We have become friends, and that means I will be there for you if you need anything, that is within my means to to give to you… Carry on the battle dearest Hen. Cx


  5. Every day is a battle and what a battle you are going through your a inspirational lady keep fighting I myself have angiosarcoma for the second time you fill me full of hope keep fighting we will be thinking about you x


    1. Thank you Shane! At this stage I finally understand that the hope and drive is fuelled from elsewhere and not from the morbid conversation you may have had with your docs. Mine always says to me he’d prefer that I prove him wrong. With rare cancers we get to defy the odds…because actually still relatively little is known! All the best!


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