Who gets to decide if I live or die? And how do they decide it?!?!

Prior warning…. this is all a little bit morbid….

The funding

The last week has been mentally tough waiting for the verdict on the funding for my second transplant, and despite my case going to panel yesterday we still don’t know any answers!! Apparently they want to get further advice from their advisers……. what about???!?! Seriously what do they base these decisions on? I’m not sure I could be the person that is essentially deciding if I should get a chance at life or not.

With all of this going on I think the last few weeks are the first time I’ve really considered that I might actually die if we can’t stop the cancer. This has never been something I really considered before, it has never been an option, I have just got on with whatever treatment plan they have thrown at me. But now I have clinical teams and commissioners deciding if it is worth paying for me to have treatment or not it does make me think “Fuck…..I am actually really ill…. So ill they think that treatment could be futile”.

On the one hand its making me want to fight harder for my right to have this second transplant. On the other hand if they end up denying the funding then I would like to know on what grounds. Do they think the prognosis is too bad? Am I better off not putting myself through the hell of a second transplant if the likelihood is I would die anyway?

What i will say though is that I am young… and the majority of the time I am clinically well. It is only the last month I have been suffering with infections, which wouldn’t have happened if they pulled their finger out and gave me the transplant earlier!!!

Update on me

So I managed a whole week out of hospital!! Woop woop!!

In that time I have had my PICC line inserted, a new hair cut (I was having to actual blow dry my fluffy hair to keep it flat), done lots of walks, gone to the gym, spent time at my mums, gone shopping, gone to knitting club, gone out for dinner, and generally kept busy waiting for my verdict!!

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Nothing has changed much from a bloods point of view… still on weekly transfusions of 2 units of red blood cells and twice weekly platelets. So please keep donating people!! Although my neutrophils hit rock bottom on wednesday where they didn’t even register on the machine….. 0.00!!!

Unfortunately, probably through all the keeping busy and stress of the verdict I have ended up as an inpatient again in the early hours this morning. Felt fine all day, other than a bit tired from anaemia, and then my temperature suddenly went up to 38.8 during the night…. which meant another night in A&E……. where AGAIN I had to explain the protocol for neutropenic sepsis and actually tell the doctor what to do with me (i.e. iv antibiotics, blood cultures, no paracetamol!!) where as he wanted to give me some paracetamol and send me home. Apparently because I’m already on antibiotics he doubts there is anything wrong with me?!?! What the actual F**k?!?!? Luckily the haemotology nurses came to the rescue, thank god!! Now I will be filing a complaint tomorrow as the care just is not acceptable!!

The Plan

So now what happens?!?! I’m being treated for my infection, whatever it might be, and then the plan is to start DA chemo on monday regardless of the funding situation. As a collective, kings, PCH and I have decided its not worth risking waiting any longer!!

8 thoughts on “Who gets to decide if I live or die? And how do they decide it?!?!

  1. Sarah

    Emma, you brave and wonderful girl. Never give up the fight. Never give up. You have given such sound reasons for having this transplant, and you deserve to have it, and to be well again. How can I – how can we all – help you to get this treatment as quickly as possible? Kick and scream…tell them straight…demand to speak to the decision maker…where are they? I’m praying for you, and channeling positive energy your way. Keep it going!! Lots of love & strength. Sarah xx

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    1. Thank you so much Sarah!! I think the main thing will be creating a buzz on facebook/twitter and getting things viral!! I will start kicking and screaming if no decision is made Monday though!! I could have been having my transplant now and avoided all the infections if it wasn’t for all the bureaucracy!! All makes me angry!! xx

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  2. Rowena Onions

    Hi Emma We’ve not met for a long time but have thought about you lots. Kate has sent us this link and we’re angry for you. Let us know how and when to help… although let’s hope you don’t need it.
    Rowena and Chris xxx

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  3. Samantha

    Emma, your blog answers the questions I find impossible to ask you face to face and I thank you for that.
    Keep on with your fight, knowing that myself and many others are praying for you and sending love.
    Anything you need, just ask.
    Samantha x

    Like

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