Falling Apart

So many words. I can't get them out. A secret not to burden with the world. Not mine to share. So many emotions. I don't know how to feel. My world is falling apart. 

I hope. I hope so much. But it's not my decision. It's out of my hands. I am a bystander. I am an adult yet I am a child. A whirlwind in my mind. 

I wish I knew the right things to say. The right things to feel. So unexpected. Shock and processing. I'm sure it will be ok. At the moment I feel like my world is falling apart. 

So I write. These nonsensical words that mean nothing to you and everything to me. Brain vomit. Getting it out. I need my Angels to work their magic. Where have they gone?

Smiling yet torn apart inside. 

It will be ok. When my world stops falling apart. 

Black & White Photo

Someone suggested to me on twitter that I shouldn't wear make up for my Facebook live Q&A that I did with Bloodwise today.  This was in response to me asking how much I should wear to hide the exhaustion.  They said that I shouldn’t because that would show the true impact of living with Leukaemia. I don't know if they were joking or being serious. It has however, pissed me off. And it also quite nicely ties in with the current Facebook fad of the black and white selfie to show solidarity with those who have or have had cancer. Well. In all honesty that can fuck off. Taking a photo of yourself and putting it on Facebook does fuck all, other than post what's probably a very nice photo of you. Which is totally cool, do that! I do it all the time. Don't tell me though that taking a photo and putting it on social media means you know how I feel. You don't. Unless you have had cancer or have it. But I suppose that's the point. Those that do it don't tend to be those who haven't had it. They only know people who have. I don't mean to sound ungrateful, un-generous and or come across as a complete bitch. From what I see from my 'cancer kid' friends (and how I react), is that all this does is upset us. Especially when treatment has impacted on how they will look for the rest of their life. It's a bit like. 'Let’s play a memory game to honour all those with dementia'.  Slightly insulting?  I think so.

I do understand the helplessness you can feel when a friend or family member is diagnosed and there is fuck all you can do to help them through their treatment in terms of side effects and all the rest of it. I do understand that text messages, emails, phone calls, meals being delivered, company to hospital appointments, just sitting on the sofa in silence watching a shit film because there are no words do help. It is these things that you excel in. Do more of this and less stupid social media campaigns that mean fuck all. 

So because of this I am posting this photo. To show you my solidarity to all my friends alive and dead who have had or still have cancer. To show you how I look on my way to raise awareness of what it's like living with cancer. The impact it has on my life.  And how I keep going. 

Blood Cancer Awareness Month

I have all these words circulating in my head at the moment.  I probably should have done this earlier today when I wasn’t quite so fucking exhausted.  I am at my parents, I’m meant to be having a week of but spent all day at my laptop on Tuesday and today, I have been at it since around 12.30ish.  Not really the plan, but what happens when you are self-employed….

I also haven’t been sleeping well either.  Not sure why.  It’s not the heat which bothers so many.  Not me.  I’m a lizard, I run at least 10 degrees colder than most and love the heat!  I don’t care if it’s hot at night and if I do kick my duvet off to begin with, I always wake up under it in the morning.

Running.  I have started that again since I got home and actually had an amazing run on Monday which surprised me after three weeks off.  I thought I would have lost all my fitness, but I really haven’t.  I went again yesterday.  I had my doubts about it as I didn’t sleep brilliantly well but thought I would feel better for it.  I spent a lot of the run thinking ‘you are a fucking idiot.  You should have done 2 flat miles around the village, not the very hilly 4.43 mile run to the next village and back which means it’s a fucking long walk if you don’t run.  You fucking moron.’  I did finish the run and only a minute slower in total than on Monday.  Which also surprised me.

Sleep. I don’t really know why I’m not sleeping properly.  Maybe it’s the wind down.  Maybe I needed two weeks off.  This is the first ‘break’ I have had since last October.  It’s weird being self-employed.  Yes my time is my own.  I dictate what I do, yet I seem to spend more hours working than many.  Or maybe that’s because I make up for lost time at the weekends so often spend a large amount of Saturday and Sunday doing what I didn’t get finished during the week.  Or I know people who are very good at switching off and leaving work at the office.  Maybe I need to get better at that.  I should relax a bit.  There is a bit of money coming in.  Not loads, just about enough to scrape through all my bills and to eat.  Not much more.  In fact, definitely not more.  My choice for living on my own.  I need it though.  I need my space.  I need to be able to go to bed at 9pm and to not be disturbed.  I think if people knew how much I lived in they would be amazed I walk around smiling.  But.  It motivates me to keep going….  Well also and the fact I love my job.  It’s fucking hard work though.  If you want to know what I do have a look (and ‘like’ it if you want) at my Facebook work page – facebook.com/harleystreetnaturopath

And I do all of this whilst living with cancer.

So.  Blood cancer awareness month.  I have so many words about this, but they are all a bit stuck.  I’ve also been feeling a bit emotional today so I don’t know if I can truly get out how I feel or I will just sit here and cry.  But maybe that’s what I need to do.  I just don’t know.  How do you sum up living with an invisible chronic cancer?  And also one that basically no one has heard of?  Fun fact:  Blood cancer is the 3^rd biggest killer and the 5^th most commonly diagnosed (thank you Bloodwise for the facts), yet, if you looked at all the dirty advertising on the tube and trains etc you would think there was basically only breast cancer.  How do I represent all of those who live with a blood cancer that I know nothing about and can’t even pronounce?!  There are over 130 types of blood cancer by the way.  Bet you didn’t know that either.

And also, I don’t even know how to represent the others with Chronic Myeloid Leukaemia (CML).  I don’t know how they feel.  Are they ok with living with it forever?  Do they feel lucky about their diagnosis?  Do they feel the same side effects as me to the chemo?  Are they content to take chemo for the rest of their lives?  I don’t know because I stay away from Facebook groups and other support groups.  I have to live in my little bubble.  I can’t take on how others feel, which is what I do, or I won’t be able to get out of bed.  I won’t be this ‘inspiring’ person that people seem to view me as.  I’m very happy to be seen like this, but, I’m just me being me the only way I know how. So it’s a bit weird people think that.

So I think I will end this with something that I wrote for Bloodwise but have changed it so it’s different.

Chronic blood cancer is a funny thing.  I have lived with it for nearly 10 years and it’s only been in the last year or so that I have associated with it being a blood cancer.  Since Bloodwise (formally known as Leukaemia & Lymphoma Research) found me.  I’m ‘user friendly’ visually, always have been and I often forget that I live with cancer and then it hits me like being smacked in the face.  And I usually cry with the overwhelming-ness of it all.  That the pill I take every evening is in fact chemotherapy and keeps me alive.  It’s completely surreal.  My big thing is the ‘chroincs’, and the ‘lost tribe’.  Those diagnosed between 16-24 and no one really knows it’s an age group that gets cancer.  And now extending it to those in their 30s.  The chronics because we look fine but aren’t.  We don’t have an intense year or 18 months of treatment and are then given the all clear, or not.  We don’t necessarily have intravenous chemo, radio therapy, lose our hair and wear a wig.  We are forgotten about.  Not known about, yet our need is arguably the highest because it’s for life.  Cancer at 22 wasn’t a year or 18 months of treatment for me.  It’s for life.  And it impacts on everything.  It sits there quietly in my blood, circulating my body all the time.  I’m not angry about it.  Well.  Not most of the time. Sometimes I do have brief moments of ‘why me’.   I certainly don’t hate it. I can’t.  If I did, I would hate myself.  I wouldn’t change it, too much good has happened because of it.  And as I said in my Bloodwise video (https://youtu.be/jbUqoZlfZc4).  

‘Don’t let cancer define you but let it shape you. It’s not all of me but it’s a part of me’. This is why people need to know and understand more about blood cancer, specifically meaning, Chronic Myeloid Leukaemia.

Fatigue

Fatigue

It's a funny thing. And a topic that I write about from time to time. It's always there, following me around like a shadow.

There have been a few conversations in person recently that have made me think about writing about fatigue again. Just because I remember what I've written about in the past and the words and emotions used, doesn't mean that others do.

This isn't going to be a whinge or a rant. More of a reflection I suppose as I was talking about this at Bloodwise last week, and it’s been quietly circulating in the back of my head since. So I’m doing what I do.  I write about it and put it on the internet. I'm not upset or angry (anymore) about comments made in passing. So much of it is said without a thought of the impact. Because normally I don't react in the moment how I want to. Because it wouldn't be nice for the person.

I was saying to someone recently, I can’t remember when, a week or two ago, about how I have to have, ideally, 10-12 hours’ sleep and go start going to bed around 9pm. Their reaction – ‘lucky you! I'd love to have that much sleep.’   No.   Not really.  It's hugely restricting on my life. I don't see friends because I have to go to bed.  I can either do work in the day so I can pay bills or socialise.  I am constantly walking a very fine line between exhausted and able to get up and do what I need to do that day, and to not be able to.

Because I look fine, people don't realise the impact fatigue has on me. And the emotions I feel towards it because I only have it as it's a side effect of the chemo that I take. It's why I'm so desperate to come off treatment.  If I was cancer and chemo free, I would be fatigue free.

Fatigue is such a hard thing to explain. People try to sympathise and say I know how you feel. No one does really. Unless they also have it. The heaviness of your head and body. The scratchy eyes. The way you feel like you've been punched in the face. Or at least. How I imagine it to be; I've never actually been punched in the face. The way you have to mentally psyche yourself up to stand up. Get out of bed. Do whatever you need to do. Mentally coach yourself through the day. You can do this. You can do this. Just one more hour. Just 5 more minutes. Nearly home time. One more email. One more research paper.  One more task to do. One more cup of coffee. A little bit of chocolate. Another mug of coffee. This is, more often than not, what's going through my head.

I try not to think too much about how I will actually find the energy to do what I need to do. The moment I do that. It's too overwhelming. It's too much. I can't do it. I hate my life. The life that has been given to me. The loss of what I used to have. The fact that I'm so fucking restricted every day. 

And I cry.

And I smile when people ask me how I am and say. 'I'm ok thank you'.

I'm not really. But no one would talk to me if I said how I actually felt when they asked me. 

Online Dating - I Give Up

So.  Online dating round 2.  So many words that I can’t quite get out.  I’m a few years older than when I tried it last time.  I thought it would be better.  I know myself more.  I’m generally speaking happier with who I am now.  Better at not thinking I’m fat.  Better at not thinking I’m ugly.  Better at not thinking I’m not good enough.  I have worked so fucking hard to get to this place with me.  So hard.  People see this person, outgoing confident, which I am.  But there is also a slightly more fragile version of me.  A slightly more broken me.  It’s hidden most of the time.  It’s there though if you take the time to get to know me.  And you know what dating is really good at? Bringing the broken me to fore with my internal chat.

So I give up. 

Being alone scares me more than anything else in the world.  Not right now.  But in the future.  I don’t want to be on my own forever.  I don’t want to not have children.  I think I might have to seriously start considering this as my reality.  And I can’t bear that.  I’m so desperate for a family.  Maybe too desperate and it’s off putting.  I don’t know.

People tell me that I’m young and I’ve got so much time.  No I fucking well don’t.  I can’t just have a baby when I feel like it.  It’s going to have to be a very clinical process.  An agreement between my consultant and I that I can take at least a year off treatment.  Get my fertility tested.   At the moment, that’s not possible.  I don’t know when it will be.  I don’t know how much of a fight it will be.  And that scares me.  I also don’t want to be an older mother.  I don’t give a fuck that many are.  That’s not what I want.  In 4 months I will be 32.  I don’t care that I’m going to be 32, I do care that in terms of having a baby time is beginning to run out.  Very quickly.  I say I have a plan and that I will do it on my own if I have to; have an IVF baby and hope that my body will support a pregnancy.   I will do this.  That also scares me.  I don’t really want to do it on my own. 

So dating.  I thought it would be a bit of fun.  I’ve been pretty relaxed about the whole process.  Tried not to get upset when I get ignored so much, or people who I’ve been chatting to suddenly disappear before we have met up.  Tried not to mind that when I have met up with guys and I think there is something there and I get the ‘I don’t think there was anything.  Let’s be friends’ message.  Part of me wants to say fuck you, don’t be such a twat, was it because I didn’t drink?   But then.  I have lost too many in my life already.  Is it worth losing more who could be special just because my ego has been hurt?  

And then that voice of ‘ you’re not good enough, see, I told you, you are ugly’ pops up again. 

I’m trying so hard to break this pattern.

So I give up.

There was one, who might actually read this, I gave them my blog, might regret that now.  But actually, fuck it. Why should I censor myself, my mind, what I think just in case he reads this?  My blog.  My brain vomit.  My space.

And then I think it’s because of cancer.  It’s too much.  My mother told me not to mention it but it’s so hard not to.  It’s who I am.  I don’t want to lie about who I am.  Not show the real me.  Which I have done.  And apparently I’m too full on.  To confident and it’s off putting. 

So I give up.

I don’t know why this particular person has got under my skin so much.  There have been others who have preferred someone else to me and it hasn’t bothered me.  I was me with them.  I warned them I’m a bit of a lunatic, outgoing etc and they thought I was going to be different.  I was a shock.  I wasn’t what they thought.  I said what I thought.

And then I have my perfect person who I can’t be with because this universe hates me.  And I compare everyone to him.  And they aren’t him. 

So I give up.

I think I'm running out of hope...

XXX

Thoughts and my Cancer on Board badge

My Lovely Bloglets,

Well, as always a bit of an up and down week.  I was in a foul mood on Thursday.  Woke up irritated, felt fat, was weighed at the hospital, didn't like what the scales said and my consultant wasn't there.  So that wasn't a great  check up.  I've been processing and reflecting on my appointment and I think the reason it fucked me off so much was something the consultant said.  We were talking about how I feel and I asked if there are any trials where people are taken off treatment and kept off it.  There has been one if you take one of the drugs, of course the one I was so intolerant to 9 years ago, and half the trial participants are still chemo free 5 years later.  This is pretty amazing!  The thing that has had a negative impact on me was the the consultant said he didn't see why that couldn't happen to me.  If I took the standard dose for around 6-12 months to really bring down my Leukaemic rate.  I currently take, and struggle with a fifth of the standard dose.  So.  Fuck.  I was talking to my mother about this and she said maybe look at it in terms of if I was to have a stem cell transplant, the time that would take and that I would probably feel like shit but then it would be over.  This is true.  I would have to stop working and move home.  So.   I'm a bit upset that the consultant said this.   I know he was trying to be helpful, but he doesn't know me and how I don’t cope on the drugs….  Anyways.  I’ll talk to my consultant when I'm back in 8 weeks.  I suppose it is good to know.   An option.  I'm just getting my life going again in London and work is beginning to pick up, I don’t really want to have to stop it all and to move back home and be an ill person again.

I've also started on-line dating again which is definitely adding to the meh.  Boys.  Don’t fucking well ‘like’ someone on an app when you can’t talk to the girl unless she messages you first and then IGNORE HER! Ok, ignore me.  So much game playing.  It does my fucking head in.  Grow up and say hello back.  It’s been less than a week.  Let’s see if I make it to 2 weeks…

I suppose those have been the downs. There have been ups this week, 4 I can think of off the top of my head so I should focus on the good outweighing the bad.  It’s so easy to be self-indulgent though, especially as my fatigue has been really fucking awful this week.  Yesterday morning I got up after about 10 hours sleep and 12 hours of being in bed.  Felt good when I woke up.  Felt good when I made breakfast.  Walked a maximum of 8 minutes to the tube to go and meet someone and I felt fucking exhausted.  Ridiculous.

Anyways, the ups.  Going to the Bloodwise office to give my opinion about something on Friday.  I always love going there.  I heart them so much.  Seeing some wonderful twitter friends, even if one of them refuses to follow me on there because I'm shit at twitter according to him….

And the biggest thing this week to make me smile has been my cancer on board badge.  It has been fucking AMAZING!!  I have been offered a seat on every tube I have got on.  This means, well, I can’t actually put into words how amazing this is.  I don’t have to try and sum up the courage to ask someone to stand up or tell myself in my head repeatedly that it’s ok and I will make it to my tube stop if I'm standing.  I wasn't sure what the reaction would be to it because it’s quite small and I am visually user-friendly, but as always, the people of London have been fab.  I have had a few surprised/shocked looks, but no one has questioned it or ignored it.  Well.  Loads have, but there has always been one to ask me if I want to sit.  This takes so much pressure and worry off my travelling around London. 

And today, something that really cheered me up, speaking to my little blonde.  I miss her so much.

So I think that’s about it for today.  Tomorrow is the start of a new week and going to bed earlier than I did last week…

With love and hope,

XXX

So I did it. 4 hrs 57

Well my lovely bloglets,

So I did it. 4 hours 57 minutes. Just under the 5 hour marker and I think around 10 minutes faster than when I did it in 2012. 

I'm not going to lie. It was hard. It was really hard. I have a cough at the moment and didn't really think about the impact of running and coughing for 26.2 miles. It makes you hurt. A lot. And I think I did damage myself when I fell over a couple of weeks ago as my left knee began to whinge  around mile 15 which never happened during training. 

In some ways I am very sad and disappointed that I wasn't closer to 4 and a half hours. If only I had walked a bit less and upped my pace a bit earlier. Or eaten more jelly babies earlier. Or..... 

I'm going to do my best not to beat myself up about this. I look at others I know who did it and did it in a much faster time than me. And I forget to be kind to myself. I don't acknowledge how fucking difficult this has been for me this year. The fact that I have nearly withdrawn so many times. That I had a really nasty fall two weeks ago and was then ill with a virus. That my energy levels are shit and I just can't do everything that others can.  

I would like to say that yesterday was amazing. In some ways it was. The person who saw me around mile 5 or 6 and yelled 'THERE SHE IS' and put his hand out for me and squeezed mine as I went by. I have no idea who that was. I'm assuming someone from twitter. Or someone who thought I was someone else.....

Tower Bridge. Always amazing. The charities go mental for you. The noise is amazing. And then my parents and brother at the end of it. And yes. I cried. 

The person supporting Bloodwise around mile 15ish I think who clocked me. Thank you. Maybe the stickers on my leggings worked!

The massive group of Teenage Cancer Trust supporters around mile 19ish I think. Just as I was coming out of a really shit 4 miles. For some reason mile 15-19 hurt a lot with more walking than I would have liked. Not a lot. But enough to slow me down. It was those 4 miles that changes it from a near 4 and a half hour run to nearly 5. My knee really began complaining and shooting pains were going up my left leg. And the aching from coughing. I was eating an orange segment and I heard this incredible noise. I looked up and there they all were. Cheering me on. And the running began again. And it picked up. 

Then the best bit. The north bank. You know the end is getting close. There are more supporters out. You can see the London Eye and Westminster. Birdcage walk and then you are done. And also, I can't remember when exactly, but overtaking the man in the rhino suit who sped past me in my shit bit. I thought to myself, no fucking way is a man in a rhino suit going to beat me!

So I had a good beginning. A fucking shit middle and a good end. I didn't hit the wall. I kept going. And I did it. 

I have all my toenails. No chaffing and my usual blister on one of my toes but nothing hideous. 

I'm sad to say that I truly think this was my last marathon. The training you need to do alongside working full time and dealing with the effects of chemotherapy are just too much for me. 

I want to say thank you to everyone in the Bloodwise running Facebook group for being so great. Thank you to all my wonderful twitter lot who have put up with my whinging, encouraged me and given, I would say, 80% of my sponsorship money. To all the people that cheered me on yesterday, for the orange segments and the jelly babies. The supporting spirit for the London Marathon is hands down the best in the world. I would never do it anywhere else. 

And finally. To my family. For believing in me and telling me that doing my best no matter what that is, is enough. And if I did withdraw it was ok that everyone would understand if I did. And especially to my brother who flew over from Singapore to watch me. It is they that make me who I am. 

So finally. If you haven't and would like to. Here is my link for two incredible charities who make having cancer just that little bit more bearable. 

http://uk.virginmoneygiving.com/KatherineRuane

With love and hope,

XxX