Feeling Meh

Feeling meh. I don't know why. Well. That's not entirely true. It's just. I don't know. But I do know. Stories not mine to tell. Needing to speak. I can't. So I shall meander about it in my own way of trying to say what's in my head.

It's hard being me sometimes. So often smiling when I don't want to be. But not wanting to be miserable either. I'm not really miserable, not truly. Just having another dip. I hope it's not the drugs. I'm so exhausted all the time.

I had a dream last night that I slept until 4.30pm and woke up in a panic that I had. And also wished that it had at the same time. I dragged my eyes open at 10 and kept them open.

I have never ever thought 'fuck you cancer' because of all the good. Not today though. And I don't like how that sits with me. I don't want to think like that. That's, to me, a poisonous way to think. It doesn't help. It's not who I am. And yet.

Someone recently implied I have an easy leukaemia not the hard one. In so many ways they are right. And in so many ways they are wrong.

Guilt. Lingering. I know I shouldn't. I know no one wants me to feel like that.

It's so hard sometimes.

The bus is going over London Bridge. How can I do anything but smile? It's wonderful. London is so amazing. I'm so lucky to be here.

So many aren't. 

I hope this passes.

Thinking of angel wings. Maybe they have been my angles. Maybe I am theirs.

Focus on the good. The smiles. The support I get. You are all amazing. So many never know how much they mean to others. I do. Blessed.

With love and hope,
XxX

A Bit All Over The Place

Well my lovely bloglets.

I've been meaning to write for a couple of weeks  but just haven't really known what to say or had the energy to do it.  I am, at the moment, completely and utterly exhausted.  I really hope it's just that finishing my degree catching up with me now that the adrenaline has worn off.  This past week all I can be bothered to do, is, well absolutely nothing.  I've been on the new drugs now for 8 weeks.  I hope it isn't them....

So, this will be short and sweet I think.  I'm really doing this because I feel like I should and I don't want to not.  I've fallen off the radar with this before and don't want to do it again.

There has been so much good news in the last few weeks as well but I don't have the energy to be truly happy about it all. Seeing friends getting married, driving for the first time in two years and for the second time in London and not crashing the car I suppose should be the main highlight.  Two journeys down the M4 two weeks apart and a third journey in a couple of weeks.

I have a gorgeous niece - just over a week old now, born on the 25th August who is utterly adorable and I am seeing her again tomorrow.  Milo also came home for a bit from Singapore so got to see him as well. Family time is so important.

I have passed everything, just waiting for the official confirmation but if my calculations are correct, I have a 2.1.  I should be so happy but I just feel like crying.  And I'm just thinking about how much better I could have done if it wasn't for the fucking fatigue and being so fucking miserable for the majority of my final year.  A 2.1 is still amazing.  I just sometimes feel cheated of what might have been if it wasn't for the cancer and the chemo.

Yesterday after I saw my first for clinic, the module that really matters as it shows how I am with my patients and as a practitioner, which is amazing, it really is.  I saw that someone I know has been given the chance to come off treatment.  She has had it different to me.  A bone marrow transplant that didn't fully take so she has been on disatinib, the last drug I was on, and has now been told she can come off it.  And that ruined it all.  I know it's ridiculous I should just be happy that she is in a place where her body is ready to be treatment free.  I should just focus on the amazing achievement of my mark.  I should just be happy I am here and able to get on with life. Especially as today I was told that my Leukaemic rate has dropped from 0.269% to 0.021%. I should.....

I have spoken to the publisher who wants to publish the idea I have had floating around in my head for years now.  They approached me which is exciting.  And I think it's going to be good and I'm going to write what I want.  I did tell them that I wouldn't write anything I don't want to, and they want me to send something over to them.  I want to do it, it's really exciting, I just can't be fucked this week, or last week.  I just want to stop feeling so exhausted.

One change is that I haven't put on any weight, well that bit is the same, but I'm not freaking out about my weight or feeling so fat so much now after doing some therapy stuff with my mother, except for today. Today is a fat day.  The first one in ages.  The way to deal with it.  Eat multiple 70% dark chocolate Tesco cookies. But dark chocolate, so, healthy.

Maybe this is all a blip, and after a few days I will begin to feel better again. I really hope so.  I enjoyed not being knackered and not feeling so whingy all the time.

I'm now off to work on my website copy which some lovely twitter lot have looked at for me and commented so I don't have complete shite on my website!

I am excited about that.  I have my first patient booked in at the end of September and I am looking at rooms next week on Harley Street.  This is what the last 4 years has been about.

I am also thinking about another tattoo.......

With love and hope,
XXX

Mental Health

Mental health is a funny thing. Well. It's anything but funny actually. And the death of a beloved actor who made so many laugh yet was tormented with demons bring it to light.

So many I 'know' on twitter struggle with depression. Some tell me about it in private. The highs and the lows. The way the meds make them feel. How they attempt to get on with daily life. And how hard it is. Enveloped in blackness. Like wading through treacle. Some strive to make others smile and laugh and others withdraw and go silent.

My last year at Uni was a struggle. Burnt out. Exhausted. Low. Depressed. The combination of extreme stress through workload and the side effect of chronic fatigue due to the drugs I was on.

It was heavy. I was heavy. All I could think about was how exhausted I was. And cry.

Luckily a new consultant listened to me. And I was. At last. Taken off the drugs rather than prescribed lorazepam.

I escaped depression as a large part of it was due to drugs I was on. So many cannot.

I didn't really talk to anyone about how I felt. I wrote and tweeted. I didn't really see anyone. I couldn't face it. All I could do was go to Uni and be at home. Cancelling on friends became the norm. But messages and emails kept me going. And twitter kept me going.

I am now through it and have been for a few months. I cannot imagine never escaping and the only way to be free is to die. I do not judge or think why did they do that. How awful of them to leave behind xyz. They did not do it to be selfish. They did it because it was the only way they could see their way out.

I understand this a little. An uncle committed suicide when I was little. He thought he was doing what was best for everyone else. It was not an act of selfishness.

'We' the general public do not understand mental health. There is a growing awareness which tragically high profile deaths, like the one today of Robin Williams, will help raise it further.

Be kind to others, no one knows what is going on behind a smile. Do not ridicule or blame or wish they would 'snap out of it'. Accept and support. Remember. A message saying 'thinking of you' can mean the world to someone. If someone falls off the radar do not be angry and assume they are being shit. Maybe they just can't talk about what is happening.

I have stood and teetered on the edge of the deep gulf of darkness and depression. I was able to pull back. Remember those who are desperately trying to claw their way up that massive rock wall face.

And if I hear anyone be dismissive of mental health, I promise you this, I will go fucking mental at them.

If you need help and feel that you can't talk to a friend or family member, there are loads of numbers and organisations who are there for you:

http://www.nhs.uk/Conditions/stress-anxiety-depression/Pages/mental-health-helplines.aspx

With love and a candle flame of hope,
XxX

A Realisation Whilst Shelling Broad Beans

So my lovely bloglets,

The last few months, well year, has been one of an awakening in many ways.  I can blame it all on one of my modules - The Therapeutic Relationship.  Journaling, reading theory, realising what makes us behave in the way that we do, tracing it back.  It's liberating, and it also brings up a lot of shit.

Along with dealing with all the cancer shit, which I have done a lot of already, believe it or not.  I now need to work on me.  Not necessarily the inner me, in many ways I am so happy to be me, I like me, I am at peace with me which cancer and everything I have dealt with confirms.  I now need to deal with the outer me.  My appearance or rather how I see it.  I have touched on this before, and I wrote my last post about it.

I think now, it's time to tell you a little story, forgive me if I have told you before, it appears that is all goes back to this event.

Let me introduce you to a little girl called Katie.  She is at school.  She has not been at school for that long, but is happy there, she is about 6. She has her friends and can't wait for after the long holiday because she knows she will then be in a new classroom.  But after the holiday she goes back into the same classroom. She doesn't understand why. She knows she should be in a different room but she isn't. And she doesn't know why.  

And after that.  She began to put on weight.  She believes she is fat and ugly.  She believes that she isn't good enough.  And today, whilst shelling broad beans, I realised.  I have thought for the last 22 years that I'm not good enough.

This is massive.  I now know what I need to work on.  I need to realise that I am good enough, that it wasn't my fault.  I spend all my time apologising, even when whatever has happened is nothing to do with me, and I couldn't have an impact on the outcome.  I feel responsible all the time.  Because.  I wasn't good enough.

The reality was that there wasn't space in the classroom for another desk and as I was a year ahead of myself at that point the school pulled me back.  I have been told it was explained to me.  I don't remember this.  I just remember walking into that classroom again and being so confused.

I am going home on Sunday and then my therapy on this begins.  With my mother using EFT and Matrix Re-imprinting.  I will go back to that moment, and I will tell little me that it's ok.  I will take away the trauma. And then.  I can forgive myself and heal. 

I am also, making progress, slowly but surely with how I look. And being brave enough to put this photo on here and twitter is proof that I am.  I can look at this and be happier with how I am. Well, I wouldn’t mind being a little bit brown, but I am looking good enough. 

I am good enough.

With love and so much hope,

XXX

Fat

Last night I put a photo on twitter that I shouldn't have done.  I did not do it to be malicious or unkind or to ridicule or to have a go or anything else that it may have been interpreted as. I will not put the photo on here to show you, it was a photo of me next to a photo of an obese person and I entitled it, 'I suppose I'm not fat...'  I have also deleted it.

I did it and tweeted it and then got the consequences of it.  I did not think.  I did not mean to portray what was interpreted.  I could blame exhaustion and not thinking properly.  I could blame not thinking properly without exhaustion, but I don't think that I should necessarily blame myself for doing it, however that is what I am doing.

Generally speaking I would like to think I'm a fairly nice person and think about others often before myself. That I think about my actions and how others would feel, and that often I don't say what I would really like to because it would be upsetting and hurtful.  I think that's why I found last night upsetting.  I never meant to be 'that' person.

I, as you know if you read this or know me, have fairly large self-image issues which I am trying very hard to over come.  I am trying to see how I am and to like, love, accept how I look without constantly wanting to be just a bit thinner, or to have smaller thighs or to look like they do.  And it's hard.  The older I get the more aware I am of myself and how events in my like have impacted, I am beginning to fully process how being fat when I was little and then in my 20s has shaped me and my self-opinion.  And it's all my own opinion.  I was never called fat.  My grandmother weighing me certainly didn't help, but I was never bullied or called names. I had friends and remember having fun.  It's all me.

I know at a level I'm not fat, to fit into the size clothes I wear I know I'm not fat, yet......  I am aware of every mouthful of food that I eat and the consequences that could happen if I did actually let myself eat everything that I wanted to when I saw it.

I hope that when I'm not so exhausted, when this fucking degree is over, hopefully tomorrow, my cravings will lessen and I won't be constantly thinking about chocolate and doughnuts and cake.

Maybe I think that I'm fat and dare I add in ugly, maybe that's too harsh, ok looking, as well because, unlike the majority of my friends, I am still single.  Maybe it's easy just to think bad things about myself as a way to explain it.  I don't know.  I do genuinely sometimes wonder what is wrong with me though, and have two categories.  Fat and ugly or don't drink and cancer.

It's amazing what we tell ourselves, with no actual true reasoning or evidence as to why.  The mind is incredibly powerful and I also don't know why I can't accept deep down what I am told.  Maybe it's all been a protection as I've needed to focus on me and not had the space or time for anyone else. Or maybe I just need a shit load of therapy.

XXX

Getting Involved

Well my lovely Bloglets,

Back again.  Lucky YOU!  So this time the content was sort of suggested to me.  Obviously I’m more than happy to be writing it, otherwise I wouldn’t be doing this.  Generally speaking, I don’t do anything I don’t want to.  You may have gathered this from me already….

I put this blog in three places.  Here, well, depending on where you are reading this here means where you are rather than where I mean it to be.  So to start again.  I put my blog on my blog blog (katruane.blogspot.com), on Facebook as a note and the Leukaemia & Lymphoma Research website (minus the swearing).   I can’t remember how or when I started posting on the Leukaemia & Lymphoma Research website, or how I came across the charity.  I have been trying to remember and can’t.  Maybe one of you reading this does know.  If you do, could you leave a comment to remind me how it happened?  It’s not important; I’m just a bit bemused as to how it’s happened.

So, Leukaemia & Lymphoma Research.  Pretty obvious why I have become involved with them.  But only in the last few weeks have I become properly engaged (gobby) with the charity.  Their focus, as the name indicates, has been on research, but now, the focus is widening to incorporate the patient. This means they have a survey out at the moment (http://populuslive.spss-asp.com/mrIWeb/mrIWeb.dll) to find out about patient experience and to then implement change where it is needed. 

Listening to patients and what they have to say is paramount.  Patient representatives should be in parliament assisting change because let’s face it.  Unless the politician or clinician has had cancer they haven’t got a fucking clue.  Patients know.  Our experience is priceless and what we say should shape future treatments both in terms of the actually drugs and the interactions between everyone in the health care system - from receptionists through to the top clinicians in the country.  This is why I do what I do. I want to help. I want to make sure that NO ONE experiences the shit that I have, because no one should.

It’s exciting getting involved with Leukaemia & Lymphoma Research now, at the beginning of the patient focus phase.  Last week or the week before I went to a focus group about patient experience and then last night about information booklets.  Obviously I love giving my opinion on things, but I do do it with others in mind and do my best to think of those without a voice. To be able to have the opportunity to input at this stage, to make sure that things are right and as they should be for patients, is crucial.  It is getting involved now that will make a difference and make things better for the next person diagnosed.

It is doing things like this, going to parliament, being on expert reference groups that show me why I was diagnosed with cancer.  I’m not being passive and whinging about everything.  I do whinge, yes, but I also get vocal, in, well I hope, a positive and constructive way.  I do this for all of use, particularly the lost tribe (16-24 year olds).  I do this for those who can’t.  I do this to make a difference.  I do this to help.  I do this to make people aware of what it’s like.  I do this because I can and will continue to do so until everyone gets the treatment they deserve.

With love and hope,

XXX

The NHS

Well my lovely Bloglets,

I'm meant to be working, so of course I thought I would write instead.

It’s something that I have been thinking about writing for a while and I sit on a yo-yo ever going up and then down with if I will write this and post it.  It’s controversial.  I don’t want to get trolled or abuse.  But saying nothing is making me angry.  So I shall write, and hope that people are kind.  Or at least recognise this as a view that I believe, as I would because it’s mine, that it’s valid.

The NHS.

Recently it has been in the forefront of everyone’s minds.  In the press.  On twitter.  Not so much on Facebook.  But there are petitions everywhere.  And a lot of hate being directed at the current government.

I’m not going to lie.  I do not know the full picture.  But to be honest I don’t know if anyone does.  IF you want to try and understand how the NHS is governed and the money is split watch this….

http://www.kingsfund.org.uk/projects/nhs-65/alternative-guide-new-nhs-england

Any clearer?  Probably not.  It’s a minefield.  And the NHS is fucked.

The problem with the NHS is not the government, this one or the last or the one before that, although to be honest, I don’t think the last one helped much dragging us into a war that basically bankrupted the country…. However.  What the NHS was set up to do and what it does now are two completely different things.  The NHS today is overwhelmed with chronic disease which is expensive, myself included and yes, I do feel guilty about this, and a rising population of the elderly.  I want to make one thing very clear.  I do NOT believe ANYONE should be denied treatment.  BUT I do believe that those who have conditions that can be resolved through lifestyle changes should not be given pharmaceuticals or surgery which is expensive.  Conditions like type 2 diabetes and obesity can be dealt with and improved through different ways.  Once again, I am NOT saying that help should not be given.  Different help should.  Part of me also thinks that if the person isn’t willing to try to change and to obtain a better level of health without pill popping, well….

And for every person over 50 to be given statins.  What a fucking joke.  Statins have side effects which will mean that some need more drugs to counter those which give side effects so more drugs are needed and before you know it a healthy person is taking 5 different drugs a day.

Big pharma has a lot to answer for. 

And the way that we expect to go to the doctor and by fixed without taking any responsibility for ourselves.  Maybe I am over critical.  I have made so many changes to try and get my body to a place where I can be chemo free.  I don’t want to be on treatment, and yes, I am eternally grateful that I get the drugs free.  Of course I am.  So many get given prescriptions who could be helped in other ways, and THAT is why the NHS is fucked.

I was at a high level meeting and it was openly admitted that the NHS runs at 60% efficiency.  60%! If the NHS can’t be sorted with all the thousands of managerial bodies etc that are already employed, how else can it be saved?  Maybe that’s the problem.  Too many governing bodies.  Not enough nurses.

I live in the NHS, not through choice.  I am of course worried about what’s going to happen, I just don’t see how it can be saved in its current state without radical change, which of course, everyone will hate. 

With love and hope,

XXX