Still Here

I've been meaning to write for weeks. I know there are those who read this who want to know how I am. My lovely Bloodwise ambassador lot. But I haven't had the headspace. Or rather. If I'm being honest. I haven't given myself the headspace. 

It's been a rough few weeks. Last week was fucking awful. Really bad fatigue came out of nowhere and it was like a fucking massive punch in the face. And Bosutinib was meant to be better. According to my notes, in 2015 is was better. Why isn't it better. 

I wonder if my body has just had enough. 10 and a half years of metabolising chemotherapy. And it's fed up of it. Exhausted. Fucked. Not ok the inside but ok on the outside. Still got my hair. Everyone telling me how good I look. Not fucking helpful when I feel fucking horrific. Yes it's great I don't look how I feel. Brilliant. Wonderful. But then. I don't want to look how I feel. No one would come anywhere near me. 

So my consultant. That wonderful person who is trying to sort me out. Had so much hope in her face when she asked me a week and a half ago how I felt. And her struggling to find a solution when I said. 'Tired'. 

So I'm back again on Monday. I've been on Bosutinib for, actually I can't remember. I think it will be four or five weeks on Monday. And I feel it. I've also been ill again. Exhausted. I need a break. I can't afford to go on holiday. To the sunshine. To somewhere beautiful where I can take photos of the sea and sunsets and my legs on a sun lounger in a bikini. I can't really afford my rent. It's a struggle to pay. And I chose to live on my own. Because I have to go to bed so early. I need quiet. I can't have my life and sleep disrupted by flatmates who don't understand. Who think being loud until 11pm is fine because 7 hours sleep is loads. I'm self-employed. Landlords also don't like that. Doesn't matter that I always manage to pay...

So back to the hospital I go on Monday. Looks like I'll be trying pegylated interferon. The new version of interferon because the old one was so fucking horrific. I'm nervous. Not going to lie. You inject it so I can't stop it after a couple of days if it's awful. It's there for 3 weeks. And half life's of drugs mean fuck all with my body. Technically I should feel fine after a couple of days of stopping the oral chemo's but it takes around 2 weeks. 

Apparently pregnant women feel fine with the interferon.....

And I was asked. 'So when would you want to do the transplant?'  

Do I? Do I really? I don't know. I have a life. Well. Sort of. 

2 people I knew died this week. Found out about both on the same day. 

One was a tragic accident. The other cancer. 

And I'm still here. 

Why. 

Do I want to risk this for a transplant? It might not work. I might be worse. It could kill me. Is it worth it? At what point do I. Fuck. I can't even think of the words to express what's going on in my head. 

I vaguely remember how I felt when I had my chemo break. I felt positive about the transplant. Like I could do it. I'd smash it. I'd be fine. I'd get my life back. 

And today? Well today I guess I should just be happy I'm alive. 

Or should I? At what point do I say no. No. This is not enough. This is not a life. This is not how it's meant to be.  I am not meant to be exhausted all the time. I am not meant to be miserable. I am not meant to have cancer. I am not meant to scare men away with being honest about how I feel. My diagnosis. The fact I don't want to be single. The fact that I want a family. The fact that I live with cancer. The fact that life isn't always a walk in the park and fucking well grow up and realise that I'm not that bad. Even though I don't drink and have cancer. 

And the guilt. Fucking hell the guilt. Too many funerals. Too much death. Why am I alive? And then. The guilt for thinking that everyone who dies gets all this recognition for how amazing they were and how graceful they were in death and how proud they are of how they hard they fought/battled/lost etc etc etc. 

Where is my recognition for getting out of bed every single day no matter how long it takes me or how hard it is. 

And then. I feel like a selfish twat who should be grateful for all I have. 

But then. I have so little compared to

others. 

But that's an easy game to play. You can always find someone worse and better of than you. 

I am just so fucking fed up of it all. 

I don't even have any tears left today. I don't have the energy to cry about this all. Again. 

I just want it all to be over. 

Lost My Happy

So I know a lot of you have probably been wondering how I’ve been.  A blog with a big bombshell and then a couple of follow up posts on how I’ve been and then silence.

I suppose the reason why is that I’ve been processing and not really wanting to acknowledge or admit what’s happening.  I have realised though, that some of my Bloodwise Ambassador lot want to know what’s happening, have been worrying and that it’s not fair for me to stay silent.  I have another check up tomorrow, so I should update before tomorrow. As fuck knows what’s going to happen.

The last check up.  I was once again completely blindsided.  I went with both parents, for the first time, well, since ever I think!  They were both with me the morning after I was diagnosed and have each come to appointments since, but I don’t think I have had both there in over 10 and a half years.  I had my list of questions written.  I had made up my mind.  Transplant.  I’m going to go for it.  The positives outweigh the risk.  Getting my life back is worth around a year to 18 months out of action.  Being how I was on my treatment break all the time, it’s worth it.  The pain.  The intravenous chemo.  Losing my hair. Moving back home.  Pausing my work.  Pausing my life.  It’s worth it.  To be able to be how I felt on my break all the time, not just for 4 weeks every 2 to 3 years.  It’s worth it.  And then my consultant fucking well backtracked.  Got to try yet more fucking drugs.  Transplant is a last option.  To be on drugs for life is much better.  Fuck Ing Hell.  What the actual fuck?! 

In shock.

Not what I want.

So I have been on Ponatinib and it’s getting worse.  I have lost my motivation.  I’m unhappy.  Days are not good.  Energy is leaving me.  Got to choose what I do.  Got to sleep for 11 hours.  Bye bye life.

If everything is still as it was last check up, tomorrow I decide if I go back to Bosutinib with steroids to stop if from fucking my liver which I really don’t want to do.  My body hated it.  Not good.  Yes I might have felt better.  Not fucking hard compared to being on Dasatinib for a long time. It ruins me.  It all ruins me.  I did feel better on Bosutinib.  I was only on it for 6 weeks and after being completely fucking ruined on Dasatinib ANYTHING would be better.  A punch in the face would be better.  Or injecting myself with Interferon.  I don’t care about injecting myself – I’ve done it before.  I am incredibly worried about Interferon.  It’s a dirty, dirty drug.  So horrible they have re-designed it so it isn’t as bad.  Do I want to inject myself with a drug that will be in my system for THREE WEEKS at a time as a SENSITIVE responder? No. No I fucking don’t.

So.

What do I do.

I am so fucking fed up of it all.  I just want it all to be over.  I can’t live like this for the rest of my life.  I don’t have a life.  I’m 32 and I lost my life years ago.

So for tomorrow I haven’t written any questions.  I have no expectations of how it will be.  I don’t even think I have the energy to get angry or upset.  I’m offered options but I don’t really have them.  I don’t really have a decision to make.  It’s all out of my control.  Maybe I just have to resign myself to the fact that my life is shit.  I lost it when I was 22 and it will never be the same again.

Sometimes I think about jacking it all in and moving back home and just staying there for the rest of my life.

Not a very happy post today.  I have hope and an angel wing tattooed on me to remind me. I feel a bit lost at the moment, wondering where they are….

XXX

No Words

I have no words.  I don’t know what to say.  I don’t know what to write.  I don’t really know why I am doing this.  My head is empty.  It’s gone.

It started slowly a couple of days ago and seems to have hit me smack in the face today.

Fatigue.

I’m exhausted.

Fuck.

I’m on a half dose – I take Ponatinib every other day.  No one else takes it like that.  It was ok.  Legs started hurting after a week.  But that was ok. It’s manageable.  A dull internal ache.  Not really a pain.  It’s hard to describe.  Always there but not really bothering me.  This meant I have stayed on every other day instead of going to daily.

I started it nearly 3 weeks ago.

Yesterday I noticed that I started to feel tired after lunchtime.  I clocked it.  I had hoped it was just because the day before I had been up early.  But I felt tired on Tuesday afternoon and spent from 5pm on the sofa.  I had around 10 and a half hours on Tuesday night. 

I thought it was just a blip.

Yesterday I saw a client, then a meeting, then a bit of work and supper with a friend.  Nothing hectic.  Arguably much less that I have been doing over the last few weeks.  And at supper time I felt tired.  Really tired. My eye was twitching.  A fatigue signal of mine.  I was going to walk home but couldn’t face it.  I went to bed at 8.40 last night.  Not to sleep straight away, but I had to get into bed.

Today, after 11 hours sleep last night, I thought I would carry on as I have been over the last few weeks.  I went for a short run – just over 2 miles, then voted, and no, I’m not going to talk about that, and walked to my work space.

And I noticed my eyes.  My face.  I feel heavy.  My eyes are burning.  I don’t have any energy.  I can’t be fucked to do my work.  I don’t even have the energy to cry about feeling like this again.

Maybe it’s a glitch.  The heaviness is reminiscent of my fatigue.  I don’t know.  I don’t know what it feels like to be normal tired, or what’s a normal amount to get done, or at what point you feel exhausted after being able to have a life.  My reference points aren’t what everyone else’s are.

All I know is that after nearly 3 weeks back on chemo I don’t feel right.  I don’t feel like me from a couple of weeks ago. 

And I was really hoping that every other day would have fuck all impact.  Like taking half a paracetamol for a migraine.

Apparently not.

Check up on Monday.

So fucking fed up of all of this.

Chemo Free and Feeling GOOD

Well my lovely bloglets,

I tend to write this when I either feel fucking miserable and need to get things out of the head to stop myself from going mad.  Or something amazing has happened and I want to show off.

Today, it’s neither of those things.  I am writing because I feel happy and like me again!

It’s taken two weeks for me to feel like this again, a little longer than I was hoping, but, it’s here!!

So what does this mean?  Well, I’m not surviving on as little sleep as I thought I would and actually ended up sleeping for 11 hours last night which I wasn’t expecting.  But I had already decided to have a chilled morning, so I woke up when I did naturally, not to an alarm which is always nice.  I think that also since feeling better I have done a lot, so it’s not that surprising on reflection that I needed a long sleep last night.

I thought I would talk you through the days as there are only 3 and a half to talk about to show you how amazing it is to be like this.

Monday – I think I had 9 hours sleep, I went for a run!!!!!!  First time since fuck knows when, and then went to my work space.  I got EVERYTHING done on my to do list – I can’t actually remember the last time I managed to do this and then went to an event.  At the event I was able to stand for TWO AND A HALF HOURS.  I haven’t been able to do this in YEARS! I can normally manage about half an hour before I need to sit.  I was also able to concentrate and DIDN’T WORRY about getting home or sleep or how I would feel the next day or ANTYING.  I was then able to walk to the tube WITHOUT wanting to cry because I was so exhausted or wonder how the fuck I was going to find the energy to get there.  It was fucking IMMENSE.

Tuesday – I woke up after around 9 hours and got ready ON TIME, (I’m even quicker at making breakfast and getting ready) and ran my networking meeting.  I then had two meetings back to back and then a patient.  I also managed to STAND on the tube on the way home and DIDN’T CRY!!!!!!!!  I also managed to do all of this without mainlining caffeine and/or sugar.

Wednesday – I think I slept a little bit more, maybe more like 9 and a half hours or 10 hours and had a meeting and then a patient and then went to my workspace to work.  I then decided to walk home which took 40 minutes and saw a friend for supper.

Today – I ended up sleeping for 11 hours last night – I think I might have done a bit much over the last couple of days….. and I went for a run and then saw a friend and had a meeting and STOOD on the tube and have been doing emails for the last hour and a half AND I HAVE CONCENTRATION AND I DON’T FEEL LIKE I’VE BEEN PUNCHED IN THE FACE BECAUSE I’M SO EXHAUSTED AND I FEEL HAPPY AND I GET SHIT DONE AND I’M NOT WORRYING ABOUT TOMORROW.

I have my life back.

I definitely have 2 more weeks of this and I am going to enjoy and love EVERY SINGLE SECOND.  And not worry about the decision I have to make.  I haven’t felt like this in years.  I don’t know how long I will have this for.  It’s so fragile.  It’s possibly so short lived.  But fuck it feels GOOD.

So I thought I would write so show the impact of being chemo free has on my life.  Or maybe to show the impact that being on chemo has. 

Being able to concentrate all day.  Something so many take for granted.  For me, this is a luxury. 

I feel light.  The bags are fading. I don’t have to choose work or friends.  I don’t have to think, if I do this today, will I be able to function tomorrow.  I don’t have to choose exercise, or get my work done.  I am free.  This is what 32 is meant to feel like.

With love and hope,

XXX