Declining a Trial and Leaving Hospital

Leaving hospital 

10 years ago today I was suddenly told I could go home in the afternoon. After being told I could potentially be in hospital for months, this was a huge shock. And I didn't feel ready to leave. 

I knew the nurses. Got to hang out with Doctor Dave (who I know got into a lot of trouble from the nurses because of this!). George my drip kept me company. I had friends come and see me all the time. I also had time on my own to just be. An en-suite room. TV, DVD player and a little fridge. It was warm. Mugs of tea appeared. Why would I want to leave?! It was my little bubble of safety. 

My consultant wanted me to take part in a trial. Put huge amounts of pressure on me to take part in this trial. I was young. Rare. Unusual. Interesting. 

I was never told I could drop out of the trial if I wanted to. Critical knowledge to have been told. 

Every day my consultant would come in and ask me if I had decided yet. I wanted my parents to decide. They couldn't. I was an adult. It was my decision. Even though I very much felt like a child again. 

I was told about the trial. (Bearing in mind I was reading History of Art. I knew nothing about how clinic trials worked. I didn't have the knowledge I have now). Normal treatment that I was going to get anyway- chemotherapy pills. Double the amount of normal treatment. Injecting myself with a drug. 

I asked if I could pick the option. No I couldn't. 

Being told I had cancer and then 3 days later being told I might have to inject myself with drugs was just too much. So after debating for 5 days and for feeling so incredibly guilty for saying no (the nurses were amazing at helping me and telling me it didn't matter if I said no) I was then kicked out of hospital by my consultant. Who never liked me from that moment. My parents witnessed the change in their behaviour and attitude towards me. 

Not only did the thought of injecting myself put me off (ironically I had to 8 months later to have eggs frozen) but I asked what happened if I started to show side effects on the double dose option. They said they would drop me down to normal dose until I was ok and then increase the dose again. 

Thank fuck I said no. The standard dose was too much for me. I was so unbelievably intolerant to it and my consultant ignored me and my pain and how I felt. Because. Research said I wouldn't feel like that. 

I dread to think how I would have been on the trial on double dose or injecting interferon with them ignoring me and how I was feeling. 

I have a lot of anger towards that fucking awful egotistical consultant who couldn't have given two flying fucks about me. All they cared about was that fucking trial. 

So today. 10 years ago. A rather bewildered and let's face it, scared, me was unceremoniously kicked out of my warm bubble of safety after being told the day before I could be there for months, back to the cold reality of 'normal life'. 

And remember Katherine, you are so lucky for being diagnosed with CML. Your life will be exactly the same and even better than it was before! You will never know you were diagnosed or taking chemotherapy daily....

What an utter twat. 

With love and hope and thank god they are now retired 

XxX

My 10th Cancerversary

I genuinely don’t really know what to say.  I just re-read the post I did on my 8^thCancerversary as Bloodwise very kindly tweeted it and it was far more profound than anything I can think of to say today.

As always, the lead up is worse than the day.  Yesterday was a bit tricky with unexpected tears in a networking meeting that wasn’t exactly what I had planned. This week is always a very vivid one. Remembering how I was and what happened on the lead up to today. A blood test. A series of phone calls resulting in my diagnosis. And going into hospital. Becoming a cancer patient. 

So today. I don’t know.  10 years.  It’s completely surreal really. I never thought I would still be on treatment now. Or that I would still be single. Or that I would be a Naturopathic Physician. That last one I am fucking happy about by the way. I am actually very pleased I'm not a lawyer as I was going to be!

Today has been a happy day. A bright blue sky and the sunshine has helped. A day so very similar in weather to today 10 years ago. I walked across London Bridge this morning and it was beautiful. I was immediately thrown back to walking over North Bridge in Edinburgh loving the bright blue sky and sunshine with the castle to my left and Carlton hill to my right. Phoning home to tell my father I had been to the doctors and that I'd had a blood test. Having absolutely no realisation or expectation of what was going to happen. 

I have had so many wonderful messages today. Waking up to one from my best friend who lives in New York made me smile. I'm sad she isn't here. She wasn't in Edinburgh when I was diagnosed as she was having a year out in Italy. So weirdly, as much as I want to see her, it's fitting she isn't here. 

And then my tattoo this morning. My angel wing. It's there. And I love it. To remind me I'm not alone. I'm watched. I'm loved. I'm looked after without knowing it. 

Seeing a friend at her cafe. 

So much laughing. Today has been about laughing and smiling. 

Which is how it should be. 

Yes, there have been many fucking awful moments over the last 10 years. Challenges I have had to face on my own, and still do. Things are not always as easy as my smiling face and throw away sarcastic comments would show. 

But. 

So much good. 

And today. I am once again shown how much my family and friends love me. 

And that kind of makes it all worth it. 

So with love, hope and the angels that watch over me. In disguise as people I know or those I have known. 

XxX

The Lead Up

Well my lovely bloglets,

Some thoughts have been tumbling around my head so I thought I would sit down and write.  As I do.  To get them out.

6 days.

In 6 days 10 years ago, possibly right at this moment the phone rang and a chain of events happened that I never thought would be.

Cancer.

This week is a funny one.  It's one that I remember so vividly.  Even though it was so long ago.

I don't really know what else to day other than that.  Today has been good, well after I got over the foul mood I was in when I woke up.  Exhausted.  Didn't want to go to a meeting.  But this afternoon I went to the doctors to say I didn't want to flu jab and really made the nurse laugh.  Which made me smile.  And then I went to see one of my wonderful friends.  So even though the fatigue is there, it was under the surface enough to make today a good one.

Seeing friends.  This is my aim for the year.  Mustn't withdraw and retreat like I did last year.  Business being better helps.  I'm still working fucking hard, but the pressure is different.  Not quite so panicked about how the fuck I'm going to pay my rent.  Which frees up head space to see people.  Who make me laugh and smile.  It's good.  I need more of that.

And yesterday I was with my niece.  Being an Aunt has to be nearly the best job in the world.  I love her so much.  And when I arrive there's a massive 'Katie!!!!!!!!' and she's happy to see me and we laugh and she makes me laugh and I get toddler cuddles and kisses.  And she wants to hold my hand. The baby soft skin she still has and the crease where her wrist is.  So grown up now, but there is still echoes of baby in her.  Part of me never wants her to get bigger.  Sleepy warm cuddles after she wakes up from her lunchtime sleep and playing hide and seek with her standing in front of me saying 'find me Katie, find me, I'm hiding'.  Although in reality she is visible, right in front of me, but I pretend not to see her and go 'looking for her'.  Precious time.  All the memories.  It's magical.

Next Thursday is a big one.  I never thought I would still be on treatment after 10 years.  I thought I would have got to the place where I would be able to trial coming off chemo and staying there.  Monitored, but chemo free.

So I don't know.  So many thoughts.  So many emotions.  But I'm here.  I'm still here.  Moving forward.  Always.  Nothing will stop me.

With love and hope,
XXX