Katie R
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Numb and Your Help Needed

Katie R
Posted by
23 Apr 2014

Well my lovely bloglets,

I had a vague idea about what I was going to blog about today.  Last week I had both an amazing and an incredibly frustrating check- up.  My Leukaemic rate has dropped from 0.014% to 0.005% which is obviously utterly amazing.  It takes me a massive step closed to coming off the drugs.  0.000% is now in sight.

Drugs.  Well.  I will be starting new ones soon.  But not the ones my new consultant wanted me to get because of bureaucratic rubbish basically.  The ones I will be starting are called Nilotinib and the annoying thing about them is that I have to fast for 2 hours before and an hour after taking them twice a day.  Not idea for a massive foodie like me who does snack to keep my energy levels up.  However.  It may be that I’m not tired with them so don’t need the snack to pick me up and boost my energy levels to get me through the afternoon.  So it might not be as bad as I think.  Also, apparently they are appetite suppressants and my current ones are stimulants, so every silver lining right?

I was going to talk about how my old consultant saw me and didn’t let me see my new one and how furious I was and that she had no idea what was going on with me and didn’t say about taking a break between drugs etc etc etc So the next day whilst getting more and more angry I remembered I have my clinical nurse specialists number, so rang her!  She spoke to my old consultant who said a break of two days would be enough and I went very calming mental and said the my new consultant had okayed 2 weeks because of how long it took me to get over the effects last year when I had a break.  My old consultant was oblivious to all of this because I haven’t seen her in a year and she doesn’t treat me as me.  So I told my CNS that I was extremely unhappy with this and much preferred my new consultants approach.  The CNS said I could take a two week break but to let her know that I was doing it, and I agreed.  10 minutes later my new consultant PHONED ME!!!!  And we spoke for about half an hour and got it all sorted.  Amazing.  I love her.  We agreed how to move forward together rather being treated like a child and a ‘there there pat your head’ type of way that I feel my old consultant has.  Anyways.  It’s sorted, and I only have 11 more days left of my current chemo.  I really hope the next lot are ok.  Oh and also, my new consultant said to come in a week after starting the new drugs because I’m so responsive and sensitive to them.  My old consultant said to come back in 6 weeks….

I am today feeling this is all a bit irrelevant and I feel very numb and tearful.  A wonderful boy, he’s only 19, I was lucky enough to hear speaking and meet at last year’s Find Your Sense of Tumour is dying.  He has been terminal for a while due to late misdiagnosis because of being a teenager with cancer.  You have no idea how often this story is told.  I am so lucky to have been diagnosed in a day.  I saw yesterday on Facebook that he has said goodbye and thank you and this is it.  To have that courage and dignity at 19 is unbelievable.   I don’t really have words to be honest.  He has inspired so many and whilst he is on his deathbed his wish to raise a million for the Teenage Cancer Trust is becoming a reality.  I hope he is able to stay with us to see the million mark on his fundraising page.  I feel, I don’t know. I’m sitting here with tears streaming down my face.  I can’t… there are no words.  Upset, guilt, hope, loss.  None of these seem to be able to explain it.  Stephen dying, my living. Why?

Milo, my little brother, is running the Great Wall of China Marathon in May for me and for the Teenage Cancer Trust.  I have been through stuff which may have been prevented had I had access to a TCT ward.  I didn’t and so my story is how it is.  Milo wants to raise £10,000.  So let’s get that £10,000 to help prevent late diagnosis in another teenager/young adult so they live the life they deserve.  So the next TYA gets the support they should, consultants who listen, so they are not alone and isolated in pain with no one hearing.  So they get the correct fertility advice.  So they smile and have fun.  Cancer can be pretty hideous.  But the Teenage Cancer Trust makes is bearable.  www.justgiving.com/Milo-Ruane1/
With hope,