Losing A Friend

Can someone you've never met, never spoken to on the phone, never sent a text to be a friend? 
Can someone who fills 140 characters or less with words that you respond to with 140 characters or less be a friend?
Can someone who makes you laugh and smile in 140 characters or less be a friend?
Can someone who is there, always, in 140 characters or less be a friend?
Can someone who lives in your phone and you know them by a little photo and an @ name be a friend? 

Twitter is a large part of my life rightly or wrongly as many of you will already know. I have my little support team living in my phone for when I can't get the words out about how I feel. Or when I can't actually talk because I will break down and I don't know what will come out. Or because I don't want my friends to worry about me because I want them to be ok. 

Some don't understand twitter and why I'm on it or why I think that the people who follow me who I chat with care. I know that some think I'm deluded to think this and it should be a cause for concern. 

Today I woke up and discovered that one of my wonderful twitter lot had unexpectedly died. Shock. Sadness. Grief. Tears. Why. 

Yes. She might have only lived in my phone but loose plans had been made to meet. I wish I had got my act together and gone in October now. 

Regret. 

The things I am feeling are not for some faceless person who I knew through 140 characters or less. The things I am feeling are for a friend who I loved. As you do with your friends. She was wonderful. Taken too early. Ever asking why. Slight guilt. I am still here. But she did not die because of cancer so that makes it easier. Still hard. I will miss her. 

Angel wings on the front of the newspaper magazine. They are everywhere. 

XxX

Changing Consultants

Well my lovely bloglets.

I have been asked to write this for Leukaemia & Lymphoma Research as I don't think that many people change consultants, so here is my story.

Changing consultants.  I'm not going to lie, I didn't think or know this was possible.  Until it happened to me. 

I started seeing my old consultant, let’s call them consultant 1 at my hospital in London which is now my full time hospital by chance.  This is because I was diagnosed at Uni in Edinburgh but didn't live there full time, and my Consultant there, let’s call them Edinburgh Consultant, knew Consultant 1 and checked with me that I didn't mind travelling in from near Hungerford to London for check-ups during uni holidays which I didn't.  I would much rather travel and be at a centre of excellence than at Swindon, which was the alternative.  Because of this I actually go to a hospital that isn't the correct one for my post code, but never mind, this is straying from the point.

I was under the care or as I now see it ‘care’ from Consultant 1 from Spring 2007 until Spring (ish I think) 2013.  This is not a post to rant about how I now feel about Consultant 1, I have done that before in no doubt multiple blog posts, so don’t really need to do it again.  And also, the change between Edinburgh Consultant and Consultant 1 was such a relief that it took a few years for these feelings to emerge. 

I had felt for a while that Consultant 1 wasn't really listening to me and I felt a bit like I had my head patted at the end of each consultation and sent on my way with nothing actually being listened to.  I had for a while had the promise of a trial that could mean coming off treatment which is what I want.  Fatigue and depression were getting worse and worse no doubt linked to increased stress at uni with my insane degree (I have recently qualified as a Naturopathic Physician).  I went to my check up where I had been promised that I would be told about the trial and Consultant 1 wasn't there.  I was called in by a consultant I recognised but didn't know and said I would like to see Consultant 1 and was told they were not there.  I went into new consultant’s room, let’s call them Consultant 2 and went mental.  Screaming, crying, swearing, the works.  I'm sure the waiting room heard every single word.  My father happened to be with me for that consultation and got me to calm down. Basically I had had enough and Consultant 2 got the brunt of it.  Now, this is where it got interesting.  Consultant 2 LISTENED to me and changed my drug dosage.  Immediately. To see if things got better and told me to go back in 6 weeks.  I couldn't believe it.  I WAS FINALLY LISTENED TO AFTER 6 AND A HALF YEARS OF TREATMENT!!!  And from then on, when I went back to the hospital I booked in with reception with Consultant 2 and I essentially changed my consultant without asking.  I did it.  Patient power. 

Unfortunately since this change in consultants, Consultant 2 has left the hospital which I found rather upsetting as I had finally started to be listened to and positive changes made with my treatment, for me to try and conquer the fatigue and depression, which were side effects of the drugs.  Joy.  I asked Consultant 2 who I should see who was on the same page as them in terms of treating ME as a person and LISTENING and BELIEVING ME and not just prescribing me ant-depressants and they suggested Consultant 3.  Consultant 2 also took me off the drugs to see if it really was the drugs or me.  It was the drugs.

So Consultant 3.  I don’t actually have enough time to get across how much I love them.  They have WITH ME discussed treatment options and changed my drugs to see if another are any better.  They have also played about with the dosage to see if it’s any more manageable.  Consultant 1 did hijack me recently and wouldn't let me see Consultant 3.  I was livid.  Consultant 3 PHONED ME that evening to apologise and I now go to a clinic on a different day so this can’t happen again.  Consultant 3 listens and communicates and emails and listens.  By the way, they listen.  I can’t tell you how this feels.  I am no longer banging my head against a brick wall.  Oh, and another thing.  I am INVOLVED in my treatment decisions.  Amazing.

So, if you are unhappy with your consultant there may be options, maybe you don’t have to see them.  It took me 6 and a half years to realise this.  You have a choice.  It can be scary and you have to be brave, but you can do it.  Don’t leave it until you explode screaming and crying hysterically in your appointment.  Speak to your CNS (Clinical Nurse Specialist) if you have one or another nurse in the clinic.  They can help guide you.  There is choice available as far as I know.  Don’t be unhappy.  Remember YOU know what it’s like to have cancer and how YOU feel on the treatment.  The consultant probably doesn't.  And remember, if you need a bit of support to speak out, take someone with you. I don’t know if I would have been quite so explosive if my father hadn't been there.  And the change that has happened for the good since that appointment has been phenomenal.

With love and hope,

XXX

A Plea for Peer Review

I will be putting this blog post in as many places as possible in terms of social media, and I also ask, if you agree with what I say to send it to anyone and everyone who may be interested.  I rarely, if ever, ask for my blog posts to be re-tweeted/shared etc, but today, I ask that you do.

Not all you may know this.  I am in fact a cancer patient and have been for just over a quarter of my life.  I was diagnosed with a chronic form of leukaemia (Chronic Myeloid Leukaemia) on the 19^th January 2007 whilst studying at Edinburgh.  Not what I was expecting after a trip to the doctors and a subsequent blood test.  I have, since moving to London in January 2009 and discovering and getting involved with the Teenage Cancer Trust, become a very active patient voice.  I speak for Macmillan, blog for and generally get involved with Leukaemia & Lymphoma Research and also London Cancer.  Since coming into Contact with London Cancer I have sat as a patient voice on an expert chemotherapy reference group as well as a variety of other focus groups, and I am on the steering and scientific committee for a research trial that will hopefully start at the beginning of 2015 involving University College London Hospital, The Royal London Hospital For Integrated Medicine and Macmillan.  I have also been to parliament to talk to MPs about cancer care in the NHS and both blog with the written word and videos.  I’m not going to lie, some of this I do for me, but a lot I do for others.

Living in the NHS for so long and experiencing both how patient should never be treated as well as (now) having excellent care means I can talk about the good and the bad.  I have experienced what many never have at my age for example making decisions about my fertility at 22.  I live with old man’s cancer, an invisible disease that I carry around with no signs as I have always been treated with a pill form of chemotherapy that I take daily, so have always had my hair etc.  However, this is not about me and my story, you can access that in elsewhere.  This is about something that I woke up to this morning.

A few years ago I was invited by the Teenage Cancer Trust to train as a Peer Reviewer, and agreed immediately.  I am very proud to be a Peer Reviewer as it means that I have a direct impact in how others are treated.  I specifically Peer Review Teenage and Young Adult (TYA) cancer wards set up by the Teenage Cancer Trust because of my experience of being a TYA. This means that I read through documentation prior to the visit and when there, alongside other peer reviewers such as a nurse, oncologist etc. we would check that what the hospital we were reviewing said was the truth.  I also cannot Peer Review any hospital that is a part of my hospitals trust where I am treated so there is no conflict of interest.  This is what is so brilliant about Peer Review.  Trained patients as well as medical staff who understand how hospitals are run and the jobs they are meant to be done go in who have NO affiliation with the hospital under review at all.  This means the review is true.  After going through the documents sent prior to the review and checking against the documentation in the hospital, the staff on the ward come in and we would then go through the points and clear up any queries.  I then ask questions to make sure that care is appropriate and how they deal with potential issues such as patients who lived a long way from the Teenage Cancer Trust ward and how they would get access. (This is so important to me as I didn’t have access to a Teenage Cancer Trust ward and my experience was horrific).  This means that problems could be spotted before anything happened and if needs be, the hospital/ward put onto special measures until the problem was sorted.  THIS SAVES LIVES AND KEEPS PATIENTS SAFE.

I received an email this morning to say that the 2015 Cancer Peer Review has been suspended.  I do not know if NHS England is going to replace it with something else.  All I know is that without it there will possibly be no review of the hospitals that were meant to have it this coming year, or if they do it will be by people who may have a biased opinion which is problematic.  This is the point of Peer Review it is people with no bias who CARE about reviewing cancer services.  I was at a meeting recently and NHS England have stated that there will be an 8% rise in cancer patients going through hospital clinics, I believe starting next year.  An 8% rise.  Will there be an 8% rise in nursing staff and consultants? This 8% rise is going to cause a lot of strain and the fall out will no doubt be on the patient.  Peer Review is one way to try and prevent it.  I also feel that my right to protect and ensure correct care has been taken away.  The patient voice is so strong and so willing to make things better for others.  Especially for the Lost Tribe, the 16-24 year olds that ALWAYS have a rare cancer as it’s rare in this age range.  It’s never expected so often there is misdiagnosis of months or even years.  It is this age group that I am passionate about and want to be able to help and protect.  Peer Review gave me that and it was a joy to do it. 

I don’t know if writing this will do anything.  I just hope that the more who read it and realise the value and importance of Peer Review in cancer services might mean that someone somewhere will listen.  Don’t let another hospital disaster happen because we weren’t able to go in and check the paperwork, speak to the staff and make sure all was ok.  Don’t let cancer services be reviewed by other departments in the same hospitals – the review will never be 100% honest.  Don’t let NHS England take away this tool that can save lives.

Here is a link to a petition which links Peer Review and breast cancer
 http://action.breastcancercampaign.org/ea-action/action?ea.client.id=1777&ea.campaign.id=32111&ea.tracking.id=sianblog

So with a heavy heart, and it truly is, I thank you for reading this.

With hope for without it there is nothing,

Katie

Lower Drug Dose

So my lovely bloglets,

I had a check up last Tuesday and once again I left just a little bit in love with my consultant.  I can't tell you how amazing it is to be listened to.  It feels rather surreal.  She asks how I am, I tell her, she listens and then she implements change and checks with me that it's ok.  Seriously.  This is fucking amazing!  I don't know why I expect it to be different with her, I suppose it's because for the previous, well, 6 and a half years, I was asked how I was, I said and nothing was done.

So the change.  I have I think 4 days left of the current dose I'm on, then I drop down from 400mg a day to 300mg, which is the lowest clinically effective dose found in trials.  I shall see how that is for about 4 or 5 weeks and then I'm back again to see her to let her know how it is.  Depending on how the lower dose is and if it's still not great, I then have one option left.  If I decide to try it, which is MY decision and if it's not good I then choose the best out of a bad lot and stick with it, with possible breaks I think when it all gets a bit much.  But, hopefully the lower dose will be better or the last option will be.

I suppose it's appropriate to talk about fatigue at this point.  It's not great at the moment, I won't lie. Have done a few epic sleeps recently.  The best was the night before last - 13 hours!  And then yesterday tears at the frustration that when I try to have a normal life for a few days I then need at least two days of doing nothing and multiple 12 hour sleeps to recover.  I don't want to whinge, I just feel a bit 'it's not fair' at the moment.  However, lot's of good to focus on, like my gorgeous nice who smiles at me so much!  It's amazing.  I am looking after her this coming Friday as my sister is going back to yoga.  I can't wait!

I am getting ever aware that the 19th January is just around the corner.  8 years.....

Another good thing I found out is that my consultant is fairly sure that I will be able to extend my freezing agreement with the hospital and that I shouldn't have lost my fertility which is a relief.  Just need to find someone now....

I feel like this post is a bit meh, maybe because I feel a bit meh.  I think maybe because I might just have to accept that I might just be a little bit (or a lot) tired for the rest of my life.  A big thing to accept, I don't want to, but maybe I will be more at peace if I do.  I still have hope though, hope that my body will get there, get to the results that are needed to come off treatment.  I have come so far, it just sometimes feels like I'm a snail on the pavement desperate to get to the other side of the road and I'm still 3 paving slabs from the curb on this side of the road.

Maybe I just need to stop being so fucking whingy and be happy with everything I have.  Which is so much.  Don't get me wrong.  My life is so rich.  I have you, I have my family and friends, and twitter. I have my business and discovered at the weekend that I can call myself a Naturopathic Physician which is SO fucking exciting!!!  And I am involved with so many exciting things.  Sometimes it's hard to remember all that and easier to focus on the slightly shitty side of life.

As always, with so much hope and love,
XXX

Talking About Me

So last week I spent some time talking about me. I know. I know. My favourite past time. However I do it for others, and that is genuine.

On Thursday night I spoke at an event for Macmillan that they put on to thank people for their support with the worlds biggest coffee morning. Whilst I am often in two minds about this charity because they are so massive and corporate and god knows how much they spend on advertising, they raised a phenomenal amount with this event. And if it does all go into the charity in terms of funding nurses and getting support to those that need it, well, that's fucking brilliant. Macmillan for those of you that don't know wrote me a cheque to pay for my egg freezing for a year when I still had to pay as I couldn't afford it.  (I didn't realise it should have been paid for as part of my cancer treatment. Naughty consultant...). This kept them safe for a year and whilst it was only £200 it was actually priceless. So I do have love for this charity.

Friday I was back at Leukaemia & Lymphoma Research to be filmed for their website. They are doing, which I think is amazing, films on all the blood cancers and people talking about their experience so you can read the question/topic and then watch a little video answer. Brilliant! It's also great as everyone talks about their experience which can be so different to what the consultants/literature you are given tells you. Particularly in my case. No need to start on that though as it's what a lot of this blog is about! It was also nice in a way to talk about everything again and to focus on the good and the bad to remind me of all the good AND I was able to give my business a plug. (By the way special offer Christmas de-stress aromatherapy massage for £60. katie@harleystreetnaturopath.co.uk). I also spoke about the parallel me who is a solicitor working in art fraud. Crazy thinking about that. I wonder what that life is like, where I live, am I happy etc. That life was not meant to be and I don't regret it or mourn for it (most of the time) just curious. But I will never know. I was also told whilst I was there that a lot of the employees know my name as they read this which is nice, so hello! And thank you!

One thing that I do find slightly difficult when I do these things is people telling me I'm an inspiration. I genuinely do not see how I am, especially as I feel I spend a large amount of my time whinging. I just carry on the best way I know, which is the only way I know, which is being me. I don't know if me is different to how I was nearly 8 years ago (8 years, fucking hell, just under a quarter of my life), or if me has changed. Well of course I have changed but I think I deal with things how I have always done. Anyway, I made a decision to carry on and that's all I have done. Just sometimes interesting events pop up that I have to deal with that someone else my age might not have to. So yes. I do find it a bit weird being called an inspiration. Although I'm not saying I don't like it......!

On a whinging energy note, I am fucking exhausted at the moment. I slept for about 11 hours on Wednesday night, spent over 12 hours in bed on Thursday night, slept for about 11 hours on Friday and last night. I felt really awful on Thursday and in fact left the Macmillan event immediately after speaking as I felt so shit.  I'm also sneezy at the moment. Do not want to get ill again. I'm hoping that all the sleeping I'm doing will help be fight off whatever is trying to take a hold.  It just shows me once again that when I try to do too much, which is basically living like a normal person, my body says no. So fucking annoying.

But all in all, at the moment I am doing ok. Went to The Other Art Fair last weekend which was amazing. Mentally spent a lot of money and it was nice to see an artist I follow on twitter, Matt Forster. Did my best to flirt a painting out of him and failed but there is always next time! Going to the theatre tomorrow night and have had lots of hanging out with my niece time and more to come this week. Also my brother is home for Christmas which has made me smile, and lots of potential exciting things with my business and cancer stuff too on the horizon. So other than the tired whinge, which we all know is a recurrent one, things are good.

And. My mother WILL kill me. I have basically decided January 19th, 8 years, is when an angel wing will become permanently with me. Someone sent me this quote from twitter by Emily Dickinson which finalised it.

"'Hope' is the thing with feathers
   That perches in the soul
   And sings the tune without the words
   And never stops- at all"

With love and hope,
XxX

Up and Down

Well my lovely bloglets,

It’s been a while I know.  It’s strange I have so much great stuff going on at the moment but have been feeling a bit meh.  It’s definitely to do with not sleeping enough and I can only blame myself for that.  I suppose also slight money worries. I have had two patients a week for a few weeks which is really good and I’m thrilled about it!  But as it happens with what I do, and part of my ethos is to educate, so I’m no longer needed, the decision was made that enough has been achieved with one for them to carry on alone.  I know I will get more, I’ve only just started, I know I’m doing what I’m meant to be doing,  it’s still a bit daunting.  I’m also writing a weekly nutrition blog post which is amazing and a really good thing for me because it reminds me how much I know, and keeps me looking for new info etc.  If you are interested in me and a Naturoptahic approach to nutrition it’s here: http://theyellowdressproject.wordpress.com/youtrition-with-katie/

And I’m now going to be a bit cheeky and do a me plug – www.harleystreetnaturopath.co.uk    www.facebook.com/harleystreetnaturopath and of course, twitter, @HS_Naturopath. 

So, it’s been a pretty cancer-tastic time recently. I have finally started writing my book/guide thing, so hopefully I can keep working on that writing regularly and get something decent done.  All has gone a bit quiet with the publisher who contacted me, but if I have to find another, I will and just hope that what I write is of interest.

I have been doing more things with Leukaemia & Lymphoma Research.   I don’t know if you remember but I’ve been to a couple of focus groups with them.  They are now expanding into patient experience rather than just research, so of course, being the gobby person that I am, I go and give them my opinion.  Whether they want it or not.  So guess who is being filmed next week?!?  ME!!!!!  Ha ha ha.  I’m so ridiculous.  They are doing films on the different blood cancers and obviously my experience is so important, if not THE most important EVER so I’m going to be on their website talking about it.  Obviously I’m ignoring the fact that I’m not the only one who has been asked….  I went in last week to talk about me, myself and cancer, and as always, when I talk, I’m thrown back and things process.  It’s good.  It’s why I do it.  It needs to be done.  And it’s so amazing that my fucking shitty experiences as well as the amazing can help others.  Talking about the bad can help change that for the good for someone else.  And that’s why I do it.  Not for me.  For others.

I have also been at another interesting focus group thing but I’m not sure how much I am allowed to talk about, so will be annoying and won’t.  I also have the monthly steering committee for the research study I am a part of on Monday.  AND I’m speaking for Macmillan at an event I think on Thursday at a place in Borough Market that basically only does chocolate.  I know.  Amazing.

I also got a bit of rage.  Unsurprising I know.  I saw on Facebook that Facebook and Apple are going to pay for their female employees to have their eggs frozen.  Part of me understands that it’s an amazing thing to be offered and paid for.  Another part of me thinks that it’s fucking outrageous.  I had IVF ( and I can’t actually put into words how grateful I am that that happened and I have my eggs and if I am infertile I can hopefully have my own baby ) as part of my cancer treatment and I had to fucking pay.  It makes me SO angry. Couples who can’t seem to conceive naturally have a go free on the NHS and ….

I do my best not to abuse the NHS and take responsibility for my health and do the best I can for me.  I also don’t want to be taking my drugs and hate that I cost so much.  However, it does upset me a lot that his happened.  But.  Breathe and relax.  It was years ago.  The money borrowed has been paid back.  I have them.  Why should I get angry?  Well.  It’s not fair.  That’s why. 

I have my check up in just over a week and I will hopefully find out if I am able to extend my egg storage or not.  The hospital agreed with me 10 years, and in 2 years, unbelievably, it’s up.  If I can’t extend the freezing then I will be having a baby, fingers crossed, in the next two years.  Which is terrifying, but also maybe what’s meant to happen.  I will also have to negotiate time off treatment as I will want to, if I can, breast feed for at least 3 months.  I don’t know if I will be allowed a year or a year and a bit off treatment.  As I say, this discussion might not to happen yet, but it’s there in the back of my mind. As well as the cost.  Will I have to pay for that part of the IVF as well?

And on a baby note.  My niece.  I am so in love.  I get to see her about once a week and she now smiles at me when she sees me.  Seeing that, I mean, there are no words.  Babies are a little bit of magic. 

In so many ways I am free, I am lucky, I am here.  But my life is not fully my own.  And that is hard.

An angel wing…it’s still with me, I have had a little look at pictures but there hasn't been one that has grabbed me.  Maybe I will get someone to draw one for me.

So as you may be able to see I’m a bit up and down, but in general all is ok, and it will be better after I’ve had a few nights catch up sleep of 11-12 hours.  And apparently I was hungry and didn't know it so have now cheered up immensely!  I love food.

With love and hope,

XXX

Catching Up

Well my lovely bloglets,

I feel like I haven’t written in a while, so thought I would do a little catch up of what’s been going on.

Firstly, I have succumbed to a fucking horrible lurgey that has been circulating.  Day 9 today and feeling so much better but still coughing, bit snotty and my voice isn’t fully back yet.  My body took drastic measures to make me rest and sleep and re-charge. I am currently at the rentals, have been here since Thursday and heading back to London on Tuesday for the expert chemotherapy reference group meeting I sit on as a patient voice.

I have been manic.  I have business cards!!!  A room to use on Wimpole Street, looking for a room in the City, approving the last tweaks to my website, which should be live this week, saw my first Naturopathy patient, have a massage patient and generally telling everyone what I do so encourage more people to see me. Oh, and a business bank account – so fucking grown up!

I am now doing a Sunday blog spot on a blog called the Yellow Dress Project writing about nutrition and nutrition type things which is amazing, and an honour to be asked.

I have sent off an example of my more narrative style of writing to the person who wants to publish my book to see what they think of it, so hopefully I will hear back soon and then I will start writing in earnest.

I am also launching, with my mother, a new networking group in Marylebone, which is part of Women In Business, a national women’s only networking business.  I am already a member of one group at Holborn, which is where I got my first patient from.  This is very exciting and a whole new experience for me, so as of tomorrow, I will be working hard to get people to visit the launch and then hopefully join.

I DON’T FEEL FAT!  I know, amazing.  And in general I am feeling pretty happy. 

Last week was a bit of an emotional roller coaster.  The funeral of a much beloved lady was, I’m not going to lie, pretty horrific.  Bringing up so much of my own cancer related shit. But.  I wouldn’t have missed it for the world.  Saying goodbye is so important and then enjoying being with her family and friends afterwards whilst eating the most monumentally enormous piece of brie is something that I will treasure forever.  

Then, two days later, the wedding of one of my most favourite girls.  One of my little gang that have been there for me no matter what, especially since my diagnosis.  That group of girls keeps me going, and I am so incredibly lucky to have them.  You know who you are, and you had better fucking well read this! 

And then, a private party at Boodles with one of my most favourite people in the world.  A school friend.  We don’t see each other very often, in fact, I think I have seen him about 3 times in the last 3 years, but that doesn’t matter.  We just slot back to how we always are.  He makes me smile so much, a very special boy.  AND I was his plus one to his father’s 70^th. So, clearly I’m his most favourite person too.  Possibly the best moment of the night was finding in the bedroom, yes, I could have gone home, but I was offered a bed, (obviously not going to say no, I might never step foot place in there again), was step by step instructions of how to make a cafetiere of coffee. Ha ha ha.

So, I’m feeling pretty loved at the moment.

And I suppose the thing that makes me smile so much at the moment, and I smile every time I unlock my phone as my lock screen photo is of course, my niece.  I couldn’t see her last week because of the lurgey, so my sister sent me photos of her.  Seeing her change as she gets bigger is amazing.  I just sit and smile at her.  The love for her is overwhelming; I can’t imagine how it is when the baby is yours.

Another thing I have on the horizon that I am looking forward to is that an artist I follow on Twitter, Matt Forster, has an exhibition next week in London.  I supported a crowd funding project he did to get a book printed of some of his art, which I think I will get this coming week.  I love art.  My first degree was History of Art at Edinburgh and I loved it.  Exhibitions make me smile – paintings, sculpture or photos, and I love buildings.  Those of you who follow me on Instagram will know that.  I can’t draw, but I can and enjoy taking photos.  Anyways, going off point.  I love Matt’s watercolours and drawings, although I think he sold my favourite picture – an elephant – instead of giving it to me, so that’s quite frankly, rude.  I have a folder on my phone of screenshots of paintings that I want from him, I’m at over 100, so if any of you feel like buying me one, his website is www.mjforster.com.

I’m still knackered, so need to have a chat in a few weeks with my consultant when I’m back in my clinic.  The fatigue does feel different, not so heavy, but on Friday night I had about 7 hours sleep and all of yesterday I was exhausted with burning eyes and face.  Not good. 

Well, I think that’s it.  Ramble mode is approaching, so I should go.

Still thinking of an angel wing – when I look down at my wrist I can see it, I think it’s going to happen; my parents are going to kill me……

With love and hope,

XXX

I Got a 2.1

Sitting here with streams of tears running down my face but so happy.  This morning I found out that my degree has been confirmed, a 2.1 with honours.  And only now is it sinking in.

A 2.1, not that special, so many get them, in fact, I would say that the majority of people I know with a degree have a 2.1.  But for me, it's different.

I was meant to get one before, but it was taken away from me.  Being diagnosed with cancer and being so intolerant to my treatment meant that I couldn't carry on with my studies as my consultant had promised.  What a twat.  So I had to take a year out. 

Meeting with a very non sympathetic academic decider at Edinburgh alongside having a tutor who didn't get understand what it meant to carry on with my friends rather than do an extra year, meant that instead of bending the rules slightly to get me through with summer extensions,  I had to make the decision to leave with a General Degree which means, well nothing.  I didn't complete the degree fully and this is something Scottish Universities give out if you don't complete the final fourth year.

I call it my fake degree.

And today I have a real one.  Well I don't get the certificate until November, but it is done.

For those of you who read this and have done for a while will know how much of a struggle my final year was.  Hindered by side effects from my treatment trying to cope with the most insane work load. So low and miserable and depressed.  If I could have done I would have quit.  But.  Something kept me going.  Knowing that my degree wasn't just a subject but what I want to do with my life.  I have been saying for the last four years that I am training to become a Naturopath.  I am now one.

I am a Naturopath.

And I am so proud of me.

With love and hope,
XXX

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

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