Wednesday, 6 March 2013


I just wanted to write a big thanks (in my study break/I am procrastinating starting my readings!!) to the people who have been dropping or sending gifts off to Boulcott Hall for me!! :) It has been ever so lovely to receive packages reminding me of how much amazing support I have. 

I honestly could not ask for better friends. I know it's been really hard for so many of you and I am really sorry for that. People tell me I should stop apologizing because it's not my fault but I know this. I still feel bad for putting everybody because at least when I die, I won't have to deal with the greif and loss but you all do.

I never will be able to say thank you or sorry enough.

I love you all.

On a happier note, enjoy a picture of the amazing cupcakes I had the pleasure of devouring!!


  1. Hi Harriet, I only tonight stumbled across your blog while searching Sarcomas within NZ! I read ALL of your posts tonight!

    I too have been diagnosed with this very rare type of cancer, a Sarcoma - however mine is not in the bones like yours, it's in my tissues/nerves/muscles of my pelvic region and like you - had NO outward signs of tumor! Only came to my attention because, lucily the tumor was growing into my left sciatic nerve, and that pain was horrendous! Hello cancer!

    I was 26yrs when diagnosed with an inoperable tumor and given 6months to live! SHIT!!

    Like you, I was put on a extremely aggressive, high dose chemotherapy regime, for 12 months (unlike you I did not have a break half way for operation though!) & I also had 7 weeks of daily radiation to my pelvis (which caused, alongside fatigue - burns, sores and bowel issues which all still plague me today!)! It was all HELL - literally hell for me! Most days I could barely stand, many times my husband had to shower me (I married my childhood sweetheart in Nov 2003, I was 21 - we had been together since I was 17 & known each other since I was 15! Lucky, praise the Lord, we had two beautiful children, boys - one in Nov '04 and the next in July '06! I am a RN - Registered Nurse, and my husband is an Assistant Principal of a Highschool here in New Zealand! We owned our own home and were finally making decent money with both of us working and traveling twice a year and getting somewhere!)!

    I now have medically induced menopause - at 26, I am now 30! That is depressing in itself! I am so, so lucky that I was able to have my children when I did, because if we had decided to wait a few years - i would not be able to, radiation also fried my ovaries!

    Yes, Chemo & radiation managed to give me time. They weren't supposed to work, as you know, Sarcomas are highly resistant to Chemo & have a extremely high recurrence rate - even with surgery! It really is one of the crappiest cancers to get! Plus, it's so unknown! It's not public, no one donates to Sarcoma - we don't have our Pink or Blue or Yellow colors, or days or even support groups! I feel very alone with this cancer - I was wondering if you feel the same way? Even if the cancer society here in Taranaki did do a Sarcoma Support Group, I would be the only one that attended because, I am the only one!

    Who was your surgeon in Auckland? Was he Gary French? He is the top Sarcoma Specialist Surgeon in New Zealand - he was given my case right away, and consulted with all the top Sarcoma Specialists around the world in my case, only because it is SO rare, unknown and wanted to ensure I got the best survival change possible! Gary French was lovely!

    So, I too am terminal! I have already lived passed my supposed "expiry date" given to me! A miracle considering I was unable to have surgery, so statistically (Sarcoma Stats) I should not be here now - if i am, rare, but should not live past the 5 year mark - which I am scarily hurtling towards at rapid speed!! I see my Oncologist every 3 mths as I am 'high risk for a recurrance', which I hate because the first two years of this I lived in hospital! Like you, in between my chemo rounds, I always ended up back in hosp with neutropenia - or blood transfusions etc! Never ending!

    Please, don't feel alone in this, I am in the same path - and if you ever need an ear of someone who truly understands you and knows what you are going through - and to validate those feelings you are having - please, please email me: as I would love to talk with you!!

    You are an amazing woman, keep fighting, don't ever give in - keep writing because it's a great outlet and you have a wonderful way with words!!

    Love Sarah from Taranaki

  2. Hi. I am the companion to a lady who was diagnosed yesterday as having angiosarcoma. We live together and are the best of friends, we are both in a state of shock coming to terms with what this means for us now. Her respiratory specialist bullied and pushed the NZ system to finally come up with this definitive DX and as she said - the ghouls are passing around her slides with great excitment because they may never see this again in their life time. Now, there is an unusual twist to her DX, unlike all the other information we have read, her symptoms began with her LUNGS being primary with bleeding into them and blood being coughed up .... for 2 years now Until we met this tenacious specialist no-one in the medical fraternity seemed too worried. Recently her platelet count dropped out which led to a bone marrow biopsy and the right tests being done and now angiosarcoma has been confirmed. She is in a lot of pain, not in her lungs but everywhere else that has a bone or a muscle it seems. We have yet to see the oncologist, it is early days yet ( A concern is that the onc has never seen this either!!) It is scary to find that there seems to be no info on a patient with angiosarcoma that has their lungs as primary - so how will the Drs know what to do?? ell thats all. Wishing you well!! JennXX

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