Giving Up

Well my lovely bloglets,

Today 6 years ago I stopped drinking and I have been thinking about everything that I have given up.

Smoking. I loved it. Getting up making that first mug of tea and having a fag. A sore throat at some point led to me to menthol filters. I was a roll up girl but couldn't roll no matter how much I tried so had a rolling tin. And after that sore throat and the discovery of being able to buy menthol filters I never looked back. And it decreased the amount of people who crashed a fag off me by well, 100% really. So that was a massive plus!

And then I stopped. My body hated it. It made me feel sick. My mind loved it. It still does at times. The thought of sitting in the sunshine with a glass of red wine or a pint of cider with a fag. Bliss. But my body was being clever. I gave up officially in the March, had my last drag that New Years Eve and then 19 days later, my cancer diagnosis.

The body tells you everything, if you can just listen.

So booze. I stopped. To start with it was just going to be a few months and then it carried on and now, today, it's been 6 years. I do miss it at times. Especially recently. But I think that's stress. And it's a good job I don't have booze as a go to.

I do miss not having to explain to people that I don't drink. Especially when the other person is slightly pissed and finds someone being in a pub or club sober a terrifying thing...

It's good I don't drink. I was a maniac and not in a good way. Drinking to cope is not a good thing. Getting so shit faced my memory was wiped instantly is not a good thing. Hating myself because booze does not make you a rational person is not a good thing.

I am much happier now that I don't drink. I like me on a night out and more importantly I like me when I get home and when I wake up the next morning.

I have given up a lot over the last 7 and a half years but giving up booze was the best thing. And also, forgive me if I'm not impressed when you don't drink for a month because it's so hard. It isn't. I've done it and continue to do it without asking for regular recognition or money for charity.

So today is an achievement and one I am proud of. Today I will shout about it because I have done what I didn't think was possible and what many can't.

With love and hope,
Me XxX

New Drugs

Well my lovely bloglets,

I sort of wish I had written this yesterday when I received the email from my consultant that my leukaemic rate has gone up from 0.016% to 0.038% so I have to start the new drugs.

Today I feel calmer. Resigned. I don't want to take them but I have to. I don't want to because of the fasting twice a day.  For two hours before and an hour after taking them. And because it's highly probably I will be intolerant. So now I will be on high alert. How do I feel? My legs are aching. But they were anyway because I'm exhausted. Shooting pain in my head. That's the fatigue. What else feels different? Or will I begin to manifest symptoms because I'm expecting them. The mind is a very powerful thing. Obviously I don't want to be intolerant to them. Two consultants have said I probably will be so I'm not hopeful. I just hope it's not like the first lot I was on. That would be fucking awful.

I have to get through the next 6 weeks.

I also don't want to take them because I have been denied the drugs I should be on. How dare they. The NHS will treat the effects of type 2 diabetes and other lifestyle related illness that can be fixed with dietary changes and exercise with pharmaceutical drugs. And I have fucking cancer and the drugs my consultant wants me to have I can't. That might be different soon depending on how I am... At least she listens to me.  And communicates with me.  Her last email ended with 'sorry :(' You have no idea what that means to me.  She understands.  Finally, someone on my side.

Always waiting.

I might have lost a bit of my hope and the idea of a bird tattoo is fading.

It seems that my body can't cope on it's own to kill the remaining cancer cells awake and dormant in my body. Maybe my dream, my want, my hope of coming off treatment is something I will have to give up on. Maybe my life will never be fully mine again.

And this hurts the most.

But I'm still here. When many aren't.

What's 2 pills a day.



XXX

What About Me?

Well my lovely bloglets,

Since I woke up this morning I have been thinking about what to write. I need to write. I don't want to whinge as I was so happy in the last post. I'm not feeling that today. I also need to acknowledge that I'm knackered. It's the final push. 4 more weeks of clinic. 5 deadlines. 6 weeks.  Done.

I have a third of my dissertation written and all the appendices sorted. That amazingly takes hours.  2 and a bit more sections to write. It will be done by the 30th. It might not be great. But it will be the best I could do with everything else going on.

A new patient as well to research for and to do my case study on. This assignment will probably end up being longer in page number than my dissertation. But it's great to have a new patient especially as I say good bye to one on Monday. It will be our 20th session together.

Last night I saw my local MP to talk about the Teenage Cancer Trust and legislation and what they do and me. The was I was treated.  Being ignored, not listened to, a hospital number and not a person.  It brought up a lot. He tweeted saying I am an inspiration. I don't feel it. I have been reflecting on the impact of Stephens death and it still is. A baby elephant named after him. I adore elephants as all my twitter lot know. They are magical. My 10th birthday treat was at an animal safari park and I got to ride on one. Nikka. She was rescued from a circus. And I got to ride around on her with her mahout walking alongside talking to her. No chain. She was free to wonder where she wanted. It was amazing.

And a posthumous MBE. How can I ever better that? And what about me? I do so much for charity. Because I want to. I don't do anything I don't want to. It's an honour to do it. I peer review. I have an impact on the NHS. I'm not going to die from my cancer. I don't have a bucket list that ended up in the media.  I have been raising awareness about the lost tribe since 2009.

What about me.


I emailed the old CEO of TCT my blog post I wrote the day Stephen died. I will treasure his email back. Words of wisdom. Encouragement. And understanding. I walk around with cancer everyday. But no one knows. It's invisible. That's the things about chronic old mans cancer. And I'm so glad it's like that. I'm very user friendly. No one knows. And that's also the problem. I don't know how long I will have to live with it. I have approximately 10 cancer cells in every 10,000 healthy cells. It's nothing. And it's everything.

I need a break. I need to survive the next 6 weeks. I need to rest and re-charge. I need to look after me. I need a lot of therapy.

I want recognition. I want to be applauded for getting on with it. For running marathons whilst on chemo. For looking after myself. For surviving my insane degree, my class has gone from 22 to 9. For being a patient voice in a variety of groups to ensure others are treated correctly.

And I am. But still. I want everyone to know my name.

I'm a middle child.

And I'm exhausted. End of a manic degree exhausted. So that's better. This exhaustion is different. It's more manageable. I find out about when I start new chemo this coming week....

I am happy. I just thought I was better about Stephen. And it's not him. It's me. It's all my shit. And I know that. Every time I see a tweet or a Facebook post or an article in the paper about him it all flares up again. This is not to belittle what he did. Or what he went through. It's just the impact it's had on me. I was three years older when I got my diagnosis than Stephen when he died.

I keep on thinking about a bird tattoo to remind me to fly.

With love and hope,
XxX

Feeling Hesitant

Well my lovely Bloglets,

I have now been feeling lighter for over a week and happy again.  It's quite strange.  The sun it out, I'm now doing a daily photo on Blipfoto (SwearingQueen if you wish to have a look) and it's really helping.  I didn't realise how much I would enjoy the 100 Happy Day challenge and it certainly didn't feel like a challenge to me.  Maybe it's because underneath all the cancer and chemo shit there is a genuinely happy person who has just needed the space and an outlet to get out.

I can't remember when I started to enjoy photography.  I think it was after my gap year when I got all the film rolls developed and I went though them with my parents showing them everywhere I had been and was complimented on the photos I had taken.  I didn't have a particularly special camera.  I don't even think it had a zoom.  I can't remember to be honest. I know I am by no means the worlds most gifted photographer but it makes me really happy.  I can't wait to be free and in August to spend time wandering around London taking photos again.  Having no time limit or destination in mind. To just wander, looking, capturing moments.  Just me, my iPod and my camera. Freedom. I long to go abroad again, as I did in the summer of 2011.  6 weeks away, 3 on my own, 3 with friends.  Just seeing where I ended up each day. Always with my camera in tow.

Yesterday I amazed myself by handing in a piece of work on time.  That's the second time I have managed it this academic year.  Being ill in October and then the grey cloud of burnout and being, well, depressed, descended.  My dissertation cut off for draft work is Monday and I took a new patient yesterday, and then there is a case study, a financial plan, a communication and marketing plan, and a continuing professional development plan to write. But I feel ok about it. My new patient will be my case study.  I don't think it's going to be particularly good, but the patient isn't complicated, thank fuck, which makes it easier.

I have 3 sections of my dissertation to write in just under 3 weeks.  I will get there.  I will get it done.  I had a good meeting with my supervisor last week and also bumped into the module leader, neither are worried about me getting it done.  They have faith in me.  So I should have it in myself.  I am getting there.  Shifts are happening.  My wonderful clinic supervisor was in clinic yesterday.  He has always been in my corner. And he is so knowledgeable and wise and he gets me.  It's amazing.  He told me it's now time to let go.  I don't need what I carry around with me any more.  It doesn't serve me.  It's not necessary.  I am now me.  And I should trust me.  I know what's right.  I know what to do.  I am ready.  And I feel this as well.  Tentatively. It's a bit strange.  Time for change.

Change.  It doesn't sit so well with me but I am getting better with it.  Change this week, I am waiting to find out about if I have to start the new chemo.  I'm nervous.  Side effects have hindered me for a long time.  Not sure I'm ready to deal with more now that I feel, well, happy.  I don't want to lose this. Someone pulled me up on twitter for posting so many photos of myself.  I know I do it.  I know why I do it.  And yes.  It is for compliments.  Not in a narcissistic way but to confirm what I am beginning, with baby steps to believe about myself.  And feeling good about me, well, that's amazing.

Next week I say goodbye to my patient that I have had since September.  I will have seen her 20 times.  It's sad but also it's time.  She is ready.  I have helped to get her there.  I'm not solely responsible and would never say that I am.  I have been a part of it though and that.  Well.  That's why I am what I am, a Naturopath. And I am well enough in myself to support someone else and to get there to where I am.  I must remember that.  I feel like a bird sitting on the edge of the nest getting ready to soar into the sky, and soar I shall.  And it's terrifying but perfect.

And so with love, hope and happiness,
XXX

I Think I'm Beginning to Forgive Myself

Well my lovely Bloglets,

As is quite often the case I don't really know where I am going with my writing today.  However with the Hospital yesterday and Stephen's funeral today it is fitting to write, even if not much is said.

Firstly, I have been overwhelmed by the comments and feedback I have had from my last post.  It was a very raw thing to write and I do sometimes wonder if I shouldn't say what I do in the way that I say it.  I read the blog of another and they have a beauty with their words that I don't think I do.  There seems to be more of  peace and acceptance maybe it's because the posts are written after contemplation.  I, however, sit and type and process whilst doing it.  Or maybe...well I don't know.  So thank you to everyone who read it and let me be how I needed to be after hearing the news that Stephen had died and everything that means to me and all the shit it brought up.  Today,  I do feel a bit lighter, even though the scales yesterday did not confirm that. HA!

So, the hospital.  After various emails from my consultant, including one on a Saturday... I KNOW!!!! It was decided that as it's been about 3 weeks or nearly a month, I'm not sure to be honest, I can't remember, since I stopped taking the old drugs, it was time for a blood test just to see how everything is going.  I will find out the Leukaemic rate in about a week and depending on how that is depends on what happens.  I have a prescription for the new drugs aka drugs of doom and have at least another week of freedom.  I think, also, that shifts are taking place and after being very spotty and a bit smelly, the joys of detoxification, I really think I feel a bit better today.  Maybe a little less tired, definitely lighter and happier.  I don't know if it's my system finally rid of the old lot or because in 2 months I will be done.  I have a fuck load of work to do, I'm not entirely sure how I will get it done.  But I will.  Because I always do. And I need to let go of the mark.  It doesn't matter if I get a 2.1 or a 3rd.  Well it does a bit, for my ego, but in terms of being a therapist no one is ever going to ask me what result I got in research methods, or how was my starting your practice financial plan.  I just need to get it done and handed in and to pass.  Seeing my patients improve and getting the feedback from my supervisors in clinic is what matters.  And the fact that I have done it.  My class has gone from 22 to 9 in clinic and I am still there.  That is what I need to focus on.  Alongside all the shit that has been going on, I did it.

Anyways, back to my consultant.  I fucking love her so much!  It's amazing being listened to and discussing what will happen rather than patted on the head and sent off for 3 months and told that you are fine and to basically get on with it.  My thyroid is also going to be tested as she is not disbelieving that it's the impact of the drugs, but she is slightly puzzled as to why I still feel fucking exhausted when this time a year ago, well nearly this time a year ago, I felt much improved after about a weekish.  It could also be that I am just burnt out from my degree and in fact not much will help that and I just need to power through.

Something else has started to happen over the last few days as well, which is ground breaking, is how I view me.  It won't come as a surprise to many of you that I don't view me as others do.  I'm not sure anyone does really, however, I am highly disbelieving of what people say in terms of compliments.  I don't know why, well I do for part of it, but not the other.  When I was little I put on a lot of weight and I think alongside that I used to think I was fat, well I was, no two ways about that, but I also added ugly to it and that has stayed with me over the last 20ish years.  Don't get me wrong, I don't suddenly think I'm the most amazingly beautiful person on the planet with a figure to die for, well, because I don't.  However, I am beginning to realise that I'm not fat.  I was, yes, and my weight has yo-yo'd, but for about 9 months now, my weight has basically been the same.  There are a few pounds of fluctuation depending, but as an average I weigh 9 stone.  I showed my flatty a picture of me from Edinburgh days and he said that I was double the size I am now and was surprised by the photo.  I think it showed him that when I say I was fat, I'm not just being a girl about it.  Ok maybe fat is a bit much, but overweight, yes. So for the last 4 or 5 days I have started to be, well I suppose, kinder to myself.  Maybe beginning to see who I really am.  Being happier with me.  It's been quite a journey but I will get there.  Maybe I need to clarify that.  I am happy with me, I haven't been so happy with the external me.

And so, I should go, and this time I shall include some photos.  I feel incredibly proud and brave doing this, as one is a picture of me from 2006 when I used to tan....boo....and yesterday morning.  Until this week, I have felt like I am the size I was and bigger.

And also, a sample of the  little collection I put on twitter when I was bored at the hospital waiting for my prescription to be dispensed.  I should have done a thumbs up one for Stephen, which I will be doing at 11 to remember him and what he did and his family and friends who have a hole in their lives and no words can make it any better.  I am also putting these photos on here because it amused me hugely and I don't want you to think I don't have any laughter in my life because I do.  A lot.

Maybe I have just started to forgive myself....
With much love, laughter and hope,
XXX

Guilt. Anger. Needing Forgiveness.

It’s funny when you say someone has died.  But.  In fact it’s anything but funny.  It’s tragic and awful but not for the person that has died.  They have gone to that blissful place we know nothing about and that is scary.  We do not embrace and accept death in this country as some nations and religions do. It’s a daunting thing that we don’t acknowledge but the only thing in life, and it’s the one fucking certainty in life regardless of what else happens, that we will die.  There is no escape.  Some people live for a day and some live for 100 years.  There is no rhyme or reason why.  It just is.

So today another death.  Of a truly remarkable 19 year old who I met last October and shared a stage with. We both talked about our stories but you couldn’t get much different.  Today his story ended and mine continues.  And the whole nation knows about him.  And only a few know about me.

Guilt.

Why me.

It’s not fucking fair.

Why am I alive.

Why am I allowed to whinge.

What have I got to complain about.

Where is my recognition.

So much.  Everything.  Nothing.

What about the rest of us?  Those that slipped away with only those around them knowing.  Those of us who carry on every day but with a silent burden.

I’m listening to the playlist I made when I did the London Marathon in 2012 for the Teenage Cancer Trust of course.  Who else?  A charity I love so much, feel so possessive about, that does so much and that I was denied treatment with because there wasn’t a unit in Edinburgh in 2007.  There is now, thank fuck.  A small charity no one really knew about, and now...  I know I wrote about this last time, it’s all still so raw.  Why does one person get catapulted into ‘stardom’? Because they are going to die.  Imminently at 19.  I was on my gap year at this point I was away in Australia or Thailand being 19, not dying, not taking my last breath.  And yet…what about me?

So selfish.

There is so much in my head but I don’t know how to get it out.  How can I when I sound like a twat?  I can’t begin to imagine how Stephen’s family feel today.  I have no concept of what it is like to lose a child, a sibling… I don’t know if he had brothers or sisters.  I can’t imagine what it would be like to say goodbye to Claudia or Milo.  I can’t.

I feel exhausted.  I am exhausted. And confused, well conflicted, and because of that feel like a bad person who cannot simply rejoice in what Stephen accomplished and it how full his life was, especially in the last four years since his diagnosis.  I feel angry.  Angry at myself.  Angry at my diagnosis.  Angry that I didn’t have TCT when I was diagnosed.  Angry that I still have to take these fucking drugs which dictate my life.  Angry that my life is not fully mine.  Angry at consultants and angry because I am not recognised at a national level which is, I know, absolutely fucking stupid.

I know I need to do a lot of self-work, I just need to get through these next 8 weeks and finish my degree and get all my work done.  Then I can give myself the space to acknowledge and process and heal and forgive.  Because I have to.  I can’t carry on feeling like this.

Maybe that’s why I met Stephen, why he came into my life.  To teach me that I still have so much to do to help me and I need to. Maybe once I have forgiven and let go of all the anger I can finally fully heal.

I don’t know.  All I can do is hope…

XXX

I Had a Dream

Well my lovely bloglets,

When I was little, I of course had my life planned out.  When I say little, I mean a teenager and then a twenty one year old and possibly even a twenty two year old.  And then the phone rang and my life was never the same again.  In some ways I have had to give up everything and in other ways I have gained it all.  I was talking to someone about it all on Thursday and I said, as I do because I mean it, I don’t say it to fool myself into thinking it.  I’m not like that.  I am honest with myself even though at times that is painful and potentially a bit self-destructive.  He asked me how much of cancer has made me, me.  How much of my response to life is because of it or because that’s who I was anyway.  I have been thinking about this and I don’t know.  Your twenties are formative years.  At University discovering who I was.  Living away from home was not a first; I had lived at school from the age of 13 and then had a gap year including 5 months travelling, so in many ways I was already very independent.  I was used to changing my sheets once a week, used to not being with my parents.  I don’t mean this to sound like I regret it.  I don’t.  I fucking loved, on the whole, my time at boarding school.  I went to a wonderful school and made some incredible friends.  Maybe it was my time there that made me, me.

Change and uncertainty are upon me.  Both with the new chemo, I have another week off and then, if my prescription has been processed, I start, in a week.  I don’t want to.  I really don’t. I have to take these drugs because of some wankers who don’t know what it’s like to take them.  Who don’t know about side effects and that in some ways I gave my life up at 22.  How dare they refuse me the drug that my consultant thinks are the best for me?  There is a reason I’m changing and why that one was chosen.  And the fact that I’m probably going to be intolerant to them as well and fasting.  It’s going to be a fucking nightmare and I don’t want to get used to it.  Once again, making my life fit around the hospital and the drugs.  It’s not fucking fair.  And I’m still fucking knackered.  Yes, I have been doing a lot of Uni work over the last week – dissertation deadline is looming and I’m seeing my supervisor on Thursday which has put the fear into me, so I’m getting my head down and doing as much as I can so far to show her I have been doing it and am getting on with it.  Don’t really want a bollocking.  Also, I want it done.  I have been tempted to defer it to next year, but I don’t want to. I want to finish in July.  I want to graduate in November.  If I don’t get it done, that won’t happen and it will be another year until I do.  I have been sleeping between nine and ten hours a night for the last week and I still feel like I’ve been punched in the face.  I just want to sleep and to not want to sit crying all the time.  To be on the sofa doing nothing.  Able to go and enjoy friends birthdays without constantly clock watching and working out how much sleep I will get depending on when I leave.

I also know it’s the last stretch of a fucking insane year of a fucking intense degree. 

Finishing in July.  It’s getting scarily close.  Still 6 more deadlines.  And then.  No longer a student.  Do I focus on setting up my practice and hoping I get enough clients to cover my rent and bills or do I get any job so I know I am financially secure but that takes time away from being a Naturopath.  I have not done these last four years to not be a Naturopath.  It’s what I am.  What I am meant to be doing.  I am fucking good at it.  I know that. Money just gets in the way of a lot.

I saw my sister yesterday and her bump which is wonderful.  I can’t wait to be an Aunt in August.  I am however all too aware of my body clock, the tick getting louder each day.  I have wanted a baby since I was ten.  This is no surprise; I just thought that by now that part of my life would be a bit different.  I don’t know what has made it like this.  Why I haven’t met someone.  Well, someone that doesn’t end in a car crash that isn’t complicated and can only remain a dream.  I have a plan.  Five more years and then IVF on my own.  I really hope that I find someone but then the last 7 years hasn’t exactly gone how I had planned.  I wonder how the parallel me is doing in the parallel universe where there is no cancer ….maybe that Katie is happy.  Not to say I’m not happy.  I just… well.  There’s room for improvement and hope.  As long as there is hope I will be ok.  I am ok.  I’m just.  Processing.  All the Stephen stuff.  Talking about everything on Thursday.  Milo doing the Great Wall of China marathon for me which includes 5, 164 steps for me. (https://www.justgiving.com/Milo-Ruane1/)  I meant what fucking lunatic brother does that for his sister? Apparently mine.

I’ve just got a lot going on in my head at the moment.  And when I’m tired I find it all just a bit overwhelming.  I really thought I would be feeling ok and not tired by now….

With much love, laughter there is a lot of that I promise, and hope,

XXX