Friday 18 December 2015

The End of 2015

Well my lovely Bloglets,

I have been meaning to write for so long.  Each day I think, I will do it today, and then before I know it, I’m in bed and the day has gone.

So today, I AM doing it.  I couldn’t remember when I last wrote, so I went and checked my blog and saw that it was a few months ago.

I have so much to say but don’t want this to be stupidly long so I’ll cut it down.

1, Chemo – had to up the dose from 20mg a day which was really manageable in terms of energy levels but my leukaemic rate went up.  Of course.  Stupid fucking body.  So now on 40mg which does a very good job of annihilating me.  So.  Good.

      2. I’M BACK IN LONDON AND I FUCKING LOVE MY FLAT AND IT MAKES ME SO FUCKING HAPPY!!!!!

      3 .My friends and family are fucking incredible, so a massive thank you to them for all the love and support I have had, yet again, given so graciously without asking anything from me in return over the last year.

       4. I went to see my little Blonde in New York, it was a wonderful week and feels like forever ago.

       5. Business is going well!  Fingers crossed and watch this space for a really good 2016.

       6. Marathon training is on track.  Hauled myself out of bed (fatigue is shit at the moment) and managed 9.07miles in an hour and a half, so pretty fucking chuffed with that. (www.virginmoneygiving.com/KatherineRuane. Thank you, thank you, thank you).

       7. I’m not being quite so mental about my weight, which is nice. I stupidly have a check up on the  7th January, so will be going for lots of runs over Christmas.

       8. Generally speaking, all in all, I am happy and have been since I moved back to London which is a  bit of a weird feeling as I was, in reality, so miserable for so long.  But I’m also so aware of it and so  grateful that I have come out the other side.  Even with my body fucking about and not playing ball.

       9. So I think all I have left to say is.
     
      10. Thank you for being there for me this year since all the shit happened and I had to leave Brixton.  I  hope you all have a wonderful Christmas and New Year.

With love, and so much hope,

XXX

Saturday 19 September 2015

I'm 'Lucky'

You are lucky. 

One of the first things my consultant said to me when we met on Monday 21st January 2007. I'm lucky to have the cancer that I have because I won't die from it and I can take a pill a day for the rest of my life which will make me feel better than I ever did before. 

I cannot tell you how angry I am at that consultant for saying those things to me. Yes. It might have been what she believed and thought. But it has in many ways been anything but lucky for me over the last 8 and a half and bit years. 

However. I am a walking contradiction because in many ways I am so lucky. 

I have recently had to say goodbye to people because they haven't been as lucky as me. And I don't like saying that I have luck when they don't and didn't. 

I don't know why some people respond to treatment or rather that treatment works for them. Because at the end of the day that's the reality. It's not down to how hard the person fights or battles. Fucking hideous terminology. It's if the treatment works or doesn't. People don't win or lose against cancer. The treatment either works or doesn't. People should say that the chemotherapy or radiotherapy or treatment is fighting and battling not the person. And if the treatment doesn't work. Then science has failed the person. Not the person has failed by dying after a cancer diagnosis. 

So. Being lucky. Well. I have my hair. I don't look ill. I can basically get on with my life. But I don't want to be on these pills for the rest of my life. 

Chronic fatigue. It's my invisible companion. Always there. Hovering. I never know when it will hit. I now know that if I do x y and z then I will regret it and should have only done x and y or many even just x. Should it be like that at 30? Maybe it is and because I have felt like this for so long I have a rose tinted idea of how my energy levels should be. Maybe they would be this shit anyway. I don't know. 

I have worked my way through all 4 drug options that have been developed for CML. Sorry, I should always call it chemo. I think I confuse people when I say the chemo isn't working and they panic and think I've relapsed or something. I call the chemo I take 'the drugs' because it's more user friendly. It means I don't think that every time I take them it's chemo. It takes the edge off and doesn't mean that I think every day, I have cancer, I must now take chemotherapy.  Because I don't want to be thinking like that all the time. 

So there are 4 different chemotherapy pills that have been developed for the specific cancer I have. The first I was so unbelievable intolerant to. The second. I got worse and worse on. Feeling exhausted and depressed. The third I had to fast which was a fucking nightmare. And the fourth. My final hope which is why this feels like such a kick in the teeth because I wanted to feel so much better on it. And it fucks my liver up. 

So the options. Take steroids to stop the reaction and start option 4 again and see what happens which I don't want to do. My liver was half way to cirrhosis. And this is my body saying it's really intolerant to the drugs. And everything I believe in goes again taking a pill to suppress a side effect of a pill. 

The suggestion. 

Let my liver recover. Go back on drug number two. Get the leukaemic rate under control again (because I've spent 7 weeks off the drugs) and then lower the dose to a manageable yet still clinically effective level. 

So at the moment I don't feel particularly lucky. And no. The pills don't make me feel better than ever. In a way I wish that I had felt ill before my diagnosis and then I wouldn't mind so much. But I didn't. I felt ok. And then all this shit was dumped on me. 

It's just been a low few weeks. I will bounce back again I know. 

I hope.
XxX



Saturday 22 August 2015

Feeling Blue

It happens from time to time. Everyone has their lows and their highs. For the last few weeks I have been in a bit of a dip. 

Not feeling right. Feeling empty. Feeling fed up. Questioning if I should have got a normal job. Has it all been a huge mistake. Not feeling happy. No energy to do anything. 

Crying. A lot of crying. 

I have felt like this before. I know it will pass. Waiting for that day when I wake up feeling better seemed like it would never happen. 

But over the last couple of days I feel lighter again. And today. Well. I think I feel a bit happy. 

Has is all been to do with my liver?

So. Sad news. My new drug that I feel better on and my liver don't get on. Apparently a very common side effect. 

I have been off my drugs for nearly a month and that's another reason why I've been feeling so frustrated about feeling so shit. Why?!? I'm drug free. Fucks sake. 

Interestingly. When I stopped my drugs, my fatigue signals appeared again. Shooting pain down my head. Achey legs. Maybe my new drugs block them so when I think I feel better, I am in fact just as exhausted. And my body can't tell me. So maybe I have spent a few weeks catching up. 

Long busy days still make me exhausted and make me cry if I have to use my brain. 

I've been sleeping between 10 and 11 hours and on the odd occasion 11 and a half hours a night nearly every night for the past month. I thought I would be down to less by now. Although I did wake up a bit earlier today. 

Back to my liver. So it's impacting on an enzyme which I haven't actually looked up so don't know what it does. Will ask my consultant when I see her. It's best I don't google things to do with my cancer etc. Google can be very dangerous. 

So the normal level is about 40 and a month ago it was over 500. It's creeping down and last Tuesday it was 115 so getting there. 

This may be why I have been feeling a bit shitty. I'm definitely blaming my fucking awful spots on it! 

When I go back on my drugs. If this carries on I will have to take steroids for a few weeks to stop my liver reacting. This goes against everything I believe in as a Naturopath. 

But. 

Do I want to go back on an older drug that I have taken and not got on with? 

I don't know. 

But I will talk to this with my consultant. I heart her. She will lay it all out for me on the table. So I can make the best decision for me. Not for her. 

So the fun and games continue with my body. At the moment I'm slightly struggling with being 'lucky'. It doesn't feel very fucking lucky at the moment. 

But. I can at least go and sunbathe now and not burn. 

And remember my baby massage class that went so well yesterday. Seeing the happy babies enjoying the massage with their mothers is a very special thing to be able to do. 

Angel wings are on their way. I have emailed the tattoo artist. A bit of my brain wonders if I will regret it. On my wrist. A visible place. What about when I'm old and my skin is different? But then. Fuck it. I need reminding that I'm looked after. That I have people there for me. All the time. Not to feel lonely and withdraw from my friends as I have over the last few weeks. That's not good. That's when I need them the most. Going silent doesn't help. 

So my wings will appear soon. I don't know when yet. 

With love and hope,
XxX

Thursday 20 August 2015

Liebster Award

One of my lovely twitter lot who reads my blog nominated me to do this.  Quite often I ignore things like this, but as she takes the time to read mine and recommended other people read it too, I thought I would.  I'm afraid I can't do the nominate other blogs to carry this on because I don't really read any.  Mainly because if I did that would be all that I did, and also, lots of people who blog do so because of illness and I can't really deal with that.  So I live in my little bubble trying to protect myself from others as much as possible.  Not because they don't deserve to have theirs read but because of the reaction it causes it me.  More often than not I get upset and angry because of 'what about me' mainly. 

So here are the answers to the questions I was asked and the picture of the Leibster Award.  Which is for those blogs that don't have thousands of followers or millions of reads per post.  To be honest, I'm amazed more than 5 of you read the shit that goes on in my head and in my life.  But there we go. And also, if you want to follow this please do. It always make me smile.  

When you were growing up what was your dream job?When I was little I always wanted to be a vet. But then the combination of a chemistry teacher who told me I wasn't good enough at science (tempted to find him and tell him I have a BA and a BSc now) and being teenage and realising that none of the good looking boys did science meant that I let the dream drift off. Then I discovered History of Art. An undergrad place at The University of Edinburgh. An interest in law and I decided that I would do a law conversion and try and get into art fraud. And then. I got a phone call. Cancer. So had to re-think that one. I have ended up as a Naturopathic Physician. I never knew it existed until 5 years ago. It wasn't my dream job when I was growing up. But it has turnout out to be just that.
Jack of all trades or Master of one?This is yet another tricky one to answer. I suppose I am a master of one get my training and qualification allows me to practice any therapy I am qualified in. I have a therapy tool box with around 16 therapies in it. So I could be called a jack of all trades.

Your favourite piece of music, and why?                                                                                
Impossible. I am mood and memory led by my music and can't pick just one. Things that always make me smile and remind me of child hood- Paul Simon Gracelands and The Travelling Willburys. And I can probably listen to The Foo Fighters regardless of mood. 

Fondest  childhood memory?                                                                                                            
Once again. Where to begin? My chocolate hedgehog cake when I was 4 with the red party dress and matching knickers. Riding my bike around inside when it was raining. Gertie the Black Lab. Meeting an elephant for my 10th birthday. 

Book or Kindle?
Book hands down every time. I have a kindle which is great for trips and travel but nothing replaces holding an actual book in your hands. 
If you could speak another language which would it be and why?
Arabic. I went to Egypt when I was 23 and fell in love with it that country
If you had to choose to live without one of your 5 senses, which would you give up?
Very difficult. Probably smell. I know it's only for short periods of time but it's not so bad when you lose your sense of smell when you have a cold. Not being able to taste, see, hear or touch would be very difficult.
 Craziest thing you've ever done?
Define crazy. I was a bit of a stupid teenager on occasion. Reckless behaviour after a few drinks. Went sky diving on my gap year. That was incredible. I have a tattoo on my left hand (soon to get another).  Booking flights to see my best friend in New York when I can't really afford it. Went back to uni to read a second undergrad degree and got another loan. Launching my own business and dedicating all my time to it and not getting a part time job. Many would view them as crazy. Or stupid. Or maybe they are the same thing. 
How did you choose your Twitter name?                                                                                            My twitter name is a bit stupid. It used to be my name and then as launching my business grew closer I realised I needed to hide my personal account as it is not professional at all. And I didn't want to lock it. I have done audioboo's in the past and the general reaction was 'oh my god you are so posh!' (I also fucking hate the word posh. It's insulting. Like the words chav and pleb. I don't call people those so massive object to being called posh). And one person said I sounded posher than the queen. And I swear a lot. So Swearing_Queen was born. 
If you could live anywhere in the world where would it be?
Egypt. Just for a little bit. A truly magical country. 
So thank you to @Peasbloss for nominating me.
Until next time which I think will be very soon as my liver has been fucking around and should probably write about that.
Love, laughter and hope

Monday 3 August 2015

The editor didn't want this

I wrote the following for an editor for a newspaper who didn't want it.  I thought I'd therefore share it with you.

Old man's cancer, chemo plague, fatigue, fertility, sobriety, limbo land and being user friendly.  These are not words I ever thought would sum up my 20s.

Diagnosed aged 22 with old man's cancer - Chronic Myeloid Leukaemia (CML)- on Friday 19th January 2007. Nearly feinting twice in a week was enough of an impetus for friends to nag me into going to the doctors. Looking back weight loss from a size 14 to an 8/10 was not in fact due to eating a bit better and going to the gym. Nor was the hair loss 'just because I have thick hair so a lot falls out' either.

Rare because of my diagnosis and age. Around a 100 are diagnosed a year with CML; the majority male over 40 and anyone diagnosed aged 18-25 is rare, the lost tribe that people don’t realise get cancer. Not that I don't enjoy being rare as the 'ignored' middle child until my diagnosis.   I also live on a daily pill form of chemotherapy and have for 8 and a half years. Another anomaly with my diagnosis is it happened in a day. A blood test because the doctor didn't know what was wrong. That night the phone rang. Long story short I guessed I had cancer over the phone because I refused to go in until I knew more. I was in Edinburgh; my parents were in West Berkshire. I wanted to phone them not some doctor.

When diagnosed I had 3 questions. Will I die? Can I drink? Can I have babies?
I was told that as long as the pill chemo worked I wouldn't die.
Yes I could drink. So did. A lot. Too much. So now I don't. Looking back I used it as a coping mechanism.
The first chemotherapy I started on didn’t affect fertility.
Fine. I was good to go; I didn't need to know anything else.

In some ways I say I lost my life that night and there is a parallel me living the life I thought I was going to have. Completing my History of Art degree, then law and working in art fraud. Cancer fucked that up. Side effects I was told I wouldn't have and ignored by my consultant meant I had to take a year out of University. I ended up leaving with a general degree which means fuck all. I call my BA in Humanities and Social Science my fake degree because it means nothing. I now have a real one. A BSc (Hons) in Complementary Medicine: Naturopathy.

Fertility was something I didn't think I would have to consider at 22 but I ended up having eggs frozen after switching chemotherapy due to intolerance.  I was put under a lot of pressure to have embryos frozen but didn't want a sperm donor. Ironically if I'm still single at 33, I'm going to have an IVF baby. Not having children is the worst thing I can imagine happening. Worse than all the cancer shit I’ve had to deal with. When I was a teenager I thought I would be married with a baby by now. I think that not drinking is off putting. I’ve seen men take a step back from me when I say I don't drink. Maybe it's just all the shit that goes on in my head. Or it’s cancer and chemotherapy. Fatigue definitely gets in the way. Someone thought I was blowing them off and I wasn't interested when I was too tired to meet up. They’re now in a relationship. Maybe this would have happened anyway.

Fatigue. It's really shit.  I’m on the train writing and all I want to do is cry. Two nights poor sleep because I had to get up to pee about 5 times both nights. I have recently upped the dosage of my pill chemotherapy and think my liver and kidneys have gone in overdrive. My chemo plague has been awful recently too. Spots that appear on my face, neck, shoulders, back and chest. I think God is getting back at me for being a naughty teenager when I had pretty good skin.

Back to fatigue. It’s what I struggle with the most; I’m so user friendly to the eye. I’ve always had my hair. I don't look ill. I'm not ill. In remission but on treatment. Limbo land. It's a funny place to be. Never knowing if I will be able to come off chemotherapy which I strive for. I’m 75-80% good with my diet eating as organically as possibly. My breakfast is a fruit and vegetable smoothie. I exercise. I smile and try to be happy. I forget I have cancer. And then. Bam. It hits me because I can't function on less than 10 hours sleep if I have to do anything that needs brain power. Yes. I can sit on the sofa and read. Or colour in, my new thing. Or write my blog which stops me from going crazy. Less than 10 hours sleep and having a meeting or God forbid two meetings, alongside some research for a patient. Anything I have to focus on. Well. I can't. So I cry or sit in a foul mood. And I forget things. My memory is fucking awful at the moment.

I walk around with this silent undetectable thing that hinders my life. I stopped being able to do whatever I wanted during the day AND night in my early 20s. I can't remember what it's like not to be tired. Not to worry about doing too much. Constantly checking in to see how I feel. Am I ok? Do I need to eat something? Can I walk to where I need to go? Do I have to cancel my plans? And no. I'm not so lucky to be able qualify for a Freedom Pass. I’d much rather have my life back, make plans, do them, and not need 12 hours sleep to recover.

During my last degree I didn't have a social life for a year because I couldn’t study and see friends. A wonderful friend got me though those very dark days of exhaustion and depression, a side effect of the chemotherapy I was then on. His encouragement and trips for the daily 'share' bag of chocolate got me through. I knew it was really bad when I ate a bag of giant Milky Way buttons in under 5 minutes and thought about another.

I hate all the 'accepted' language around cancer. Fuck knows who allowed it. I don't fight, battle or suffer.  Maybe it’s because I live with it and have for nearly a quarter of my life. I can't have those negative feelings towards cancer the floats about in my blood stream.

I wouldn't change my diagnosis. Aspects of it yes, in a heartbeat. In some ways I lost my life at 22 but the one I gained I wouldn’t change. People are very kind to me on twitter and with my blog. They call me an inspiration. But I'm not. I'm just living my life the best way I can. Whilst I had some shocks and changes in my 20s, it's made me, me.

Tuesday 28 July 2015

Trying To Not Make It About Me

I don't want to make it all about me. Recently I saw something on twitter which was all about that person. When in fact. They weren't the one experiencing what was happening. And I don't want to do that.

Today I had the hospital. It's been a tough week. Tired. Never cope well when I'm like this. 

Just before I went into the hospital an email. Last week I found out a guy I was at school with died. Today I found out how. 

Cancer. 

Last week a funeral. 

Cancer. 

Today someone from twitter died. 

Cancer. 

A Facebook update from someone. It's back. 

Cancer. 

The reason I am tired. 

Cancer. 

The reason I was at the hospital. 

Cancer. 

I feel like death and cancer are following me around. I know this is selfish and self-indulgent. I am by no means the only person affected. And in all his honesty don't know these people well. 

And then the age old. Why I am I alive, and ignoring those fucking annoying leukaemic cells that won't fuck off and be killed by my own immune system and need chemotherapy to do it, healthy. 

Why am I still here when those who didn't smoke, drank less that me and have been healthier than I have been died? 

And today someone at the hospital said we are so lucky. I don't feel lucky today. 

I am so full of self pity. I hate this. 

Monday 22 June 2015

Media Accepted Cancer Language

I wrote this a while ago to send out to publications to see if they wanted to publish it and/or liked my writing.  I have been in talks with one editor they said this topic has been written about loads before. I replied. Well then why do the media keep on using it if patients hate it?!?   And then I saw 'Cancer Girl' in the Metro earlier in the week and thought, now is the time.  If you know any jurnos, feel free to share this with them,.

Cancer sufferer. I hate that phrase. Along with cancer journey and winning or losing their battle with cancer. I know hate is a strong emotion to use in reference to words. But I really do. I read those media friendly approved words and phrases, by fuck knows who, which are also often used by cancer charities which does my head in, and feel rage.

But I think I'm allowed. As I am a cancer sufferer battling on their journey and winning. If you want to use the accepted language that everyone feels comfortable with.

Which I hate.

I do however have a fuck load of survivor’s guilt. Is it because of this language associated with cancer that you see everywhere? And have you noticed, as was pointed out to me by a friend who also follows me on twitter when I was ranting about this, that only cancer has this? You don’t hear of cardiovascular patients winning or losing nor with diabetics. Why is it cancer has this?

I do however have my own cancer language - chemo plague, the spots I get periodically which I blame my daily pill chemotherapy on. It could of course be hormones or maybe the cheeky bit of chocolate I had. But it's funnier, to me anyway, to call it chemo plague.

I have to laugh.

I also have a cancer card, an invisible thing I use to my advantage, normally when I don't want to do something. And once again. It makes me laugh.

I’m a TYA OAP – teenage young adult old age pensioner.  I was diagnosed at 22 so fell within the TYA age bracket of 16-24.  I am now at 30 a little bit beyond that but still feel my affiliation and allegiance to those TYAs, the lost tribe often forgotten about and The Teenage Cancer Trust will be my charity until the day I die.  I wasn’t lucky enough to have access to one of their wards when I was diagnosed as there wasn’t one in Edinburgh, and my treatment was well, fairly horrific being ignored by a consultant who didn’t know what to do with me because I was about 60 years younger than the rest of their patients and generally speaking able bodied.  When I started reacting to my treatment and showing severe intolerance I was told that I shouldn’t feel like that because according to the research I won’t.  However, this is not a space for me to talk about that.  Again.  I have a blog.  I talk about that there.  A lot.  Because 8 years after that happened, I still carry it around with me.  Because you do.    The Teenage Cancer Trust prevents this happening because they are amazing.  So, I’m a TYA OAP, which also makes me laugh.

I am 'user friendly'. To look at me you would never know that I was diagnosed with old man's cancer (chronic myeloid leukaemia) when I was 22. And I am female. Making me a rare diagnosis. Which I must admit, I do like. I'm a middle child- any excuse to talk about myself! I have and always have had my hair. I'm not bloated from steroids. I don't have a Hickman line. I just take a pill every day. And deal with all the shit that goes along side it in the best way that I can. I do have an amazing therapist though who helps me through it all.  She’s also my mother.  No doubt against every ethical rule in the book, but for me, it works.  Nothing better after a therapeutic sob to get a cuddle, to be embraced as you were when a child and reassured and comforted.  A kiss on the forehead to remind me that it will all be ok.  I still need that.  Even though I am 30.  My diagnosis in many ways catapulted me back to being 5 years old again.

This accepted language is good at tugging on heart strings - I get furious with charities for using bald 8 year olds or having words like 'you can't save me but you may be able to save the next person diagnosed'. I think that's dirty advertising to get money. And yes I know that's it's this money that helps support families of those 8 year olds currently in hospital on intravenous chemotherapy that I have never had. Or funding research into drugs that may help stage 4 breast cancer. It just doesn't help those still here. Still fighting.  Urgh.  Helpless to help those.  Maybe that’s why I hate it all, it makes me feel helpless.  I am now a therapist myself, a Naturopathic Physician.  I like to help people feel better.  To make them smile.  And I can’t with those photographed in the adverts.

But then. Maybe this language used is all about you. Not about me. I am voicing something that I believe many going through treatment or who are beyond it feel. Or maybe I'm just writing this as a survivor. Urgh. Hate that. I am writing this as me. A 30 year old who walks around with enough Leukaemic cells in her blood stream to mean that daily chemotherapy is essential. But few enough that she looks normal and can basically live a normal life. Just waiting to see how the fatigue is on the new chemotherapy. Drug option number 4. Intolerant to the last 3. Last option. Let's hope this one is better.


I am not a cancer survivor or someone who is wining or won or fought or battled. I am simply living life the only way I know how to. I responded to the drugs. I didn't need a bone marrow transplant in the end. I didn't die. I shouldn't feel guilty because of this. And I do. Because of the media friendly language. 

Wednesday 27 May 2015

Happiness

Happiness is not always something that I feel. I have days when I don't realise how bad it has been until suddenly I feel this feeling. As I do today. And I feel happy. Not that I felt unhappy yesterday but I didn't feel happy like I do at the moment. 

I don't know if it's because I had two complete days of no work at the weekend. I read, played on my gameboy and did colouring in. I supposed I allowed myself to be a bit like a child again. And I had some sleep. 

Also yesterday I went for a run and did my exercises. I will do this three times this week, I only managed it twice the week before. So it could also be that, that adds to it. 

And the sun is shining. That definitely helps. I feel warm. Not cold. Being cold makes me miserable. I hate that. And I don't feel fat today. That also helps. I took a photo of myself to post on twitter as I'm wearing my amazing cat jumper and thought. Looking quite thin actually! And took a photo of myself smiling. And thought. Looking ok today Katie. Looking ok. 

I'm also in a national magazine. Basically the same article that was in the Sun on Sunday's magazine, Fabulous. But it still makes me feel good. And of course everyone on Twitter and Facebook is being nice about it. 

I am partly writing this as I put a post on Facebook last week, it was a post floating around as part of a mental health week and I wrote a bit at the start of my post about me. About the fact that often I smile and say I am fine, ok, well, good. Because in many ways I am. But in some I am not. I had a fucking shit week with fatigue and it completely destroyed me. Very few actually realise this about me and the fine line I have to tread. I'm living at home at the moment and I think in all honesty it was a bit of a shock to my mother. To see how I really am when I am like that rather than a phone call to say I am tried before crying and then feeling a bit better and hanging up. Very few realise this fine line I tread every day, constantly making sure I don't do too much. Which I inevitably  do. Because I'm 30. I want to be able to do things during the day AND the evening on only 8 hours sleep. But I can't. 8 hours sleep means I can just about  do things during the day. 10 hours means I can just about managed day and evening but normally one or the other.  12 hours means I can do both, but then not the next day. 

And then I feel fucking miserable. 

I often smile when inside I just want to cry. 

But today. I am smiling. And I'm smiling inside as well. 

With love and hope,
XxX

Monday 18 May 2015

Fatigue

I try not to moan. I try not to complain. I know how lucky I am in so many ways. There are people I know and love who are not long for this land. And I can't imagine what that is like. To have been through it all. Chemotherapy. Radiotherapy. Surgery. All those hours of sitting in hospital waiting rooms and to still die. It's fucking shit. It really is. And I'm still here. I'm still alive. And for no apparent reason at the moment to change this, I am destined to be here for quite a while.

And yet. My life is not mine. I am plagued and hindered by fatigue. Those that have it know the fine line we walk. To make sure that there is enough sleep. Not too much walking. Not too many meetings. Eat enough food. Keep going using caffeine and sugar. I hate how dependent I am on caffeine. But if I don't. I don't know if I would make it through the day.

I smile and say I'm well when people ask. Because in general I am. And then I have days like today. A busy week last week. Not enough sleep last night. And I'm completely and utterly fucked. And when I say not enough sleep last night. I probably had 7 and a half hours. And I can't function. I had a meeting this morning and now. All I can think about doing is crying. I have emails to send. Admin to do. I also have to exercise because of my fitness plan. I have no idea how I'm going to do this.

And this. This I am sick of. And I don't know what to do. I keep on forgetting to take my drugs. Maybe it's because I don't actually want to be taking them. I don't. But I do. Because of the unknown. If I stop and the leukaemic rate rises and triggers the bone marrow back into producing leukaemic cells and I don't response to the pill chemotherapy I take daily. It's another story entirely. It's a stem cell transplant. It's living in hospital. It's having my immune system and bone marrow destroyed. It's possibly not surviving. Or having even worse side effects to deal with.

So really. I should just stop whinging about being tired. Because it could be so much worse.

With love and hope,
XXX


Sunday 3 May 2015

My Body Doesn’t Like General Anaesthetic

So my lovely Bloglets,

This week I experienced something for the first time, and all the medical staff I spoke to were rather surprised that I have hit the grand old age of thirty and have never had one.  Probably because of my healthy history.  Is a general anaesthetic.

I arrived at Kings College Hospital on Denmark hill at about 6.20am with my mother to go to the day surgery unit to have a LLETZ (not a cone biopsy as previously thought and what  I talked about in my last JTV Cancer Support video blog https://jtvcancersupport.com/2015/04/a-phone-call/).  And for those of you who don’t think I’m capable of getting up before 10.30am I was up at 4am.  LLETZ stands for Large Loop Excision of the Transformation Zone. So, what is a LLETZ? And for those of you who are squeamish maybe don’t read this bit.  It’s a heated wire that cuts the tissue and cauterises it as it goes so it stops the bleeding as it happens.  Think of a cheese wire that’s hot.  Nice.  You ARE welcome.

I was a little bit apprehensive of the general anaesthetic as I’ve never had one before and a thought did flit across my mind of, will I wake up?  But clearly I did.  The staff were really wonderful and I was amazed that the doctor who carried out the procedure and their assistant were female AND that they came to talk to me before I had the procedure carried out.  My only experience of anything vaguely like this before is when I had eggs harvested, by a man, who I have never met before and introduced himself just before the sedation kicked in and he inserted whatever he did into me to start the egg harvesting.  Not very patient friendly, but I suppose that was nearly 8 years ago – a lot has changed with the patient voice and patient focus since then.  Anyways, she was really really lovely.  The only thing which had slight alarm bells ringing was when she asked me why I was having a general and not a local and it’s normally done under local.  I of course had no idea, but then the letter was found in my notes to say why.  Afterwards the doctor said it was a good thing as they had to remove a lot, more than they thought of my cervix.  Not only in terms of surface area but they also went down 14mm which means that when I am pregnant (fingers crossed) I will need a stich put in to keep my cervix shut and the baby in the womb.  This doesn’t worry me as I know it’s a pretty common thing and I know women who have had it done and had healthy babies.

That bad things from that day.  General anaesthetic makes me really sick and I fucking hate feeling sick and being sick.  I was offered a cup of tea and a sandwich when I came around – no thanks.  The nurse then offered me cold or warm water which I thought was really good of her as warm water is less of a shock to the system, so I said yes to warm water.  I sipped it really slowly as I was feeling a bit sick, felt better and then worse and was then sick.  And felt better so was offered more water and a couple of biscuits which I drank and ate really slowly.  Felt better, looked over the ward and was very jealous to see a woman drinking tea, eating a sandwich, and was then very sick.  I was told I could leave and felt like shit in the car, went to sleep and felt better by about 3pm.  I took an hour to eat 3 table spoons of yoghurt at home which the doctor advised when I told her how sick I felt and I managed to keep it down. 

I don’t know how long I was out for.  The procedure only took about 15 minutes.  I don’t know what time I went into theatre, around 8.15 or 8.30 I think and then next thing I know is that it’s 10.30.  I’m still not 100% and yesterday was my first day of being able to eat properly again.  Annoyingly I don’t feel nice and thin after not eating properly since Wednesday as I didn’t feel 100% then.  Anyways.  Another bad thing, the anaesthetist who told me his assistant had the magic touch with inserting cannulas and I wouldn’t feel a thing lied.  It fucking hurt.  And I have had those before and put it more painlessly.  So that was joyous.  The bruise has nearly gone.  And my throat hurts from the tube.  Whinge whinge whinge.

So that was my fun few hours in King’s College Hospital on Thursday.

BUT on the plus side, no pain whatsoever from the procedure itself, thank fuck for my superhuman power of a stupidly high pain threshold.  I am taking it really easy though as advised.  Basically been on the sofa or in bed.  No exercise for a week, strict instructions on that as they don’t want any heavy bleeding to happen or infections as that could mean going back to hospital for re-cauterisation and antibiotics etc.  I don’t want that, and I am a very compliant patient.  Chronic fatigue helps with the whole not doing anything anyways.

Results in about a month.

Normal hospital on Tuesday so will be back after that no doubt.  Also need to so a charity blog about the stuff I’ve been doing recently.

With love and hope,

XXX

Saturday 18 April 2015

Cancer Language

I have written something about the use of media accepted language of cancer which I have said I won't post as I'm waiting to hear back from a newspaper and magazine about if they want to print it.  It's still circulating in my mind though. 

I was recently asked to take part in a survey as I am a cancer sufferer. Urgh. My initial response in my head was ,no fuck off. I fucking HATE that phrase. And then took a breath and thought. It's not your fault you use it. It seems to be an accepted phrase that everyone is happy with. Until you speak to those who have or have had cancer (I nearly wrote cancer community *vomit*) and you realise that actually we hate it. 

Those of you who read this regularly or follow me on twitter will know I have my own language I use. My recent bout of chemo plague is going, thank god, and I no longer look like a spotty teenager. I think it was from my new drugs that my body is adjusting to. 

On the new drugs front. All seems to be ok other than my old buddy fatigue. Now. I would like it if that fucked off! I have stopped feeling sick and no longer have prickly skin on 100mg, 200mg was definitely too much for me. I am so happy my consultant went from the, let's build you up slowly and see how you go approach rather than start at the standard dose of 500mg and we'll reduce if you have any side effects option. That was the approach of my old consultant. I am so relived I have my new consultant. Last night I emailed her a non urgent question about exercise and she replied in TEN MINUTES!!! On a Friday night! Amazing. Truly love her. So much. 

Leukaemic rate result in just over a week which will be the true sign of how the new drug at the lowest possible dose is doing. Fingers crossed. 

Anyways. I have digressed. Back to language. 

So I hate the 'accepted' language but I also don't like it when people say 'fuck cancer' either. Possibly strange because I swear so much. But it's true. Maybe it's because I have lived with it for so long and have such unusual treatment that I can't think about it like that. I wouldn't change my diagnosis. And I know not many would say that. But it's true. Maybe it's because I haven't had invasive surgery or intravenous chemo and radiotherapy. Maybe it's because other than fatigue I can get on it with. I don't really have any scars from it literally or metaphorically. And when I read fuck cancer I grimace and my stomach tightens because it doesn't sit well with me. 

But then who am I to say what is right or wrong when another is using it because it is right for them and how they feel about having had a diagnosis. 

I'm writing this because I need to get it out. Not to say that people are wrong to say it when they themselves have or have had cancer, it's just not my approach and attitude towards the cancer I live with. 

Life would be boring if we were all the same though. Right?

So I sign off as always with love and hope. And I suppose because in a weird way I love my cancer as it is part of me I can't have this angry fuck you attitude towards it. It's lurking in my blood stream. Maybe in my left leg or my right little finger. I don't know. And because I love me. For all the whinging I do about my appearance I do. And I love all the good that has happened since my diagnosis and all the wonderful things I have done and people I have met. It's truly amazing. And I love that I can make a difference and do. 

And hope. Because I always have that too. Not just because I got it tattooed on me. Sorry Mummy. I hope that I will be able to become chemo free. I hope that no one else experiences the shit that I did. And I hope that those who face a new diagnosis do get better and that their treatment works. I hope because without it there is nothing. 

XxX

Saturday 11 April 2015

Easter Musings About Hideous Chemo and My Weight

Well my bloglets,

I wasn't going to put this on here, I was going to wait and see if a paper would be interested in publishing it, but I have decided that I want you to see it now and I can write something else if a paper is interested in me writing for them.  I wrote it nearly a week ago on Easter Monday.

I say I wouldn't change my diagnosis. And I mean it. Too much good has happened because of it. Sounds mental?  Well. I am a bit.

Today I am sitting in the sunshine writing this, remembering another sunny Easter weekend 8 years ago. I will forever remember this Easter as I felt so fucking awful. Intolerant to the chemo I was on. Ignored by my consultant about the severity of it all. Just told to take more pain killers. More frequently. Higher doses. No you don't feel like that because the research says you won't and you should be feeling better than you ever have.

The pain. I can't describe it. In every nerve and muscle. In my bones. I could hardly hold a glass of water it hurt too much.

I wanted to die. To escape the pain. I had relief from it twice a day when I had a hot bath. One in the morning to get me out of bed and downstairs, then one again at night to get me back up to bed. This was my motivation not to be an ill person in bed. Not that the pain left at night. I would wake up every time I turned over. And take more pain killers. I was only on that chemotherapy for about 3 months. It felt like forever.

I was taken off them by an on call registrar at the hospital. I couldn't get the words out down the phone because I was crying so much. My sister took the phone and spoke to them. He said stop. Why are you still on them? I don't know who he was. He was responsible for me getting my life back.

This part I would change, to be able to come off that chemo when I first started showing intolerance not nearly 3 months later.

I'm a bit mental about my weight. I was fat as a child. An emotional eater due to emotional trauma. I now know what triggered it and have had therapy about it. I'm still working on it. Getting better though. My internal chat is kinder than it was. I still get pissed off with myself though when the hospital scales show I've put on weight. I hate them. Digital to two decimal places. So unnecessary. They don't need to weigh me. Well. At least I don't think they do. It doesn't impact on my treatment.

In a weird way I'm grateful to my diagnosis. To my cancer. I know. Fucking weird. I did warn you. It meant that without trying I lost loads of weight. Down from a size 14 to an 8-10. About half a stoneish lighter than I am now. But without trying. It gave me confidence. Being thin. Not feeling fat all the time. Trying on clothes and they fitted. Didn't have to struggle to do up the size I had taken from the shop floor as I didn't want to admit to myself that I was a size bigger.

I had a photoshoot recently for an article. I was worried about trying on trousers for it. I have a bit of an odd body shape. All legs. Short torso and a high waist. Would the trousers fit? Should I have said I was a size bigger? Will I hang over the sides? They did fit. No hanging over the sides. I'm a size 10 for trousers. And yet. I still feel a lot of the time that, well, not that I'm fat, but that I could be thinner. And it's true. I could be. I have been.

After I came off the fucking hideous chemo and the pain began to fade I stopped taking the pain killers. I didn't realise my body had become addicted to them because they didn't work. Even though I was taking dihydrocodeine and ibuprofen about every 2 hours. They didn't kill the pain. So when the pain because manageable. I stopped them. Ironically. I don't really like taking drugs even though I have to take chemo daily. Anyways. I was a junkie going cold turkey. I spent 3 days vomiting, shivering, and also had awful diarrhoea. I now know why people get addicted to pain killers. I also went down to 8 and a half stone. I'm about 5ft 6 or 7. And I felt fucking BRILLIANT!!!! You could see my hip bones, my stomach was slightly concave and that was bliss! For me. Apparently I was too thin to everyone else.

It was only temporary. After being able to eat again the weight came back and part of me, still, even 8 years later, strives to be than thin again.

The fucking fashion industry and glossy magazines and Photoshop have a lot to answer for.

I have also recently put on a bit of weight which fucks me off. I was 9st for months and could eat what I wanted due to a stupidly stressful degree. Those days of a share bag of chocolate amongst other treats to keep me going are long gone. If I do that now. I put on weight.

I have been good with my running though and thought I had actually lost weight. Then got on the scales. Fucking idiot. 9 stone 6 pounds. Not happy. I want to be at that magic 9 stone again. And I know that muscle weighs more than fat. And I know I should go by clothes not scales. I know all of this.

And yet.

But in some ways I think it's better for me to be concerned about my weight, no matter how ridiculous I'm being. And I know I am. 100%. Than to worry about other things. Like will I ever be able to come off the pill chemotherapy that I take. Daily.

With love and hope,
XXX


Wednesday 18 March 2015

Reduced Dose of New Chemo

Well my lovely Bloglets,

Three weeks into my new drugs or three weeks after starting my new drugs, that’s probably better English.  Anyways.  Three weeks.

I started on 100mg a day which is a fifth of the standard dose as I’m what they call a ‘sensitive responder’, which is good as it means the drugs work, but also means they tend to take it out of me a bit.  As you all know if you are a regular read of this.  100mg seemed to be fine so after a week I upped it to 200mg as told to by my consultant.  At some point, I can’t remember when, I started to get prickly and itchy skin.  Not good. When that happens I tend to freak out a bit as that was the first sign that I was severely intolerant to the first drugs I was on.  And ignored.  Then I started to feel sick.  I’m lucky, I have a pretty solid stomach and rarely feel sick, unless I have eaten too much but that’s a slightly different feeling.  This was properly feeling sick.  Which wasn’t great.  It also seemed to be, I discovered, that when I felt sick it was also because I was hungry.  In the beginning I didn’t want to eat as that’s the normal thing when you feel like that.  I can’t remember why I decided to eat when I felt like that one day, but I did and the nausea went.  Weird.  Yesterday I was given a booklet on my new drugs.  Side effect number one.  Nausea.  Side effect number two.  Itchy skin.  And it all made sense.

I don’t know if I’m still as tired – it’s hard to gauge at the moment whilst I’m between flats as my life is much quieter than it normally is as I tend to chill out at the parents more than when I’m in London.  I’m still getting the shooting pains in my head which are a fatigue signal, yet in the evening I don’t feel tired until much later and seem to be waking up after 9/9.5 hours which is about an hour earlier than I was a couple of weeks ago.  I’m not sure if my body signals are just a bit confused at the moment as the hungry signals seemed to go and nausea was the new feeling for eat something.  I am also drinking caffeine later in the evening than I used to, which may be because I’m tired but am not recognising it.

Anyways, back to 100mg and a check-up in 4 weeks.  I was meant to be back in 3 but I have my pre-procedure assessment.  Oh and on the I MIGHT HAVE CERVICAK CANCER FREAK OUT!!!!!!  My letter finally arrived from the clinic about 2 weeks late, well done Royal Mail *slow clap* and it clearly says in the letter don’t worry about cancer.  So.  Relax and breathe.  I feel like a bit of an idiot about my reaction now to be honest.

I think that’s it really.  I also finally met my clinical nurse specialist who is wonderful. Got a lot of love for her and my consultant.  My consultant also swore in my consultation which made me laugh and then of course I removed my filter and my standard language resumed.

I looked at a flat last night, waiting to hear, fingers and toes crossed.  I need to be back in London.  Been feeling a bit displaced and low because of it. 

With love and hope,

XXX

Wednesday 4 March 2015

Another Phone Call and Some Worry

I did that thing I know I shouldn’t do and advise people not to do it.  I Googled.  Google can be amazing and helpful and useful and well, it’s how I prove I’m right most of the time.  However it can also be a dark and scary place.

A voicemail.  The hospital.  Unexpected.  No letter in the post.  No warning.  And I’m sure I’m blowing this all out of proportion.  I really hope I am.

I am good.  I look after myself other than a bit of cheeky sugar and some trans-fats.  Yes, my diet could be better, but overall it’s pretty good.  I don’t drink or smoke anymore and haven’t in years.  I stopped smoking 9 years ago and drinking 6 and a half years ago.  Where has the time gone?!
Due to going to University (the first time) in Scotland I started having smear tests younger than I would have done in England.  I was 20.  I got the letter and I went.  Yes there is information out there than 20 is too young and not needed but I look after me, so I went.  And did every time a new letter arrived, which wasn’t very often. I can’t remember.  3 years later or maybe even 5?  Anyway, whenever it did, I booked an appointment and went.

Yes it’s a bit embarrassing a bit uncomfortable but it’s over quickly, and better to be a bit embarrassed and uncomfortable with someone who does that job all day every day for about 5 minutes than not.  After having eggs frozen and having my ovary follicle size measured very regularly for about 3 weeks, I quickly got over the embarrassment stage.  And then at some point, I can’t remember when, maybe 5 years ago, my smear test results became abnormal – very common, nothing to worry about, come every 6 months.  So I did.  And they became more normal again and I think I went a year between appointments.  Ish.  I can’t really remember because I get the letter, I make the appointment, I get the results – abnormal come again in 6 months, or, it’s fine, come again in a year (ish I think) because they were abnormal previously, make the appointment and go.

Then the results became abnormal again and I was back to tests every 6 months.  And then I was referred for a colposcopy, a little biopsy of the cervix, luckily I seem to be superhuman when it comes to pain and it didn’t hurt me.  I can’t remember when I had the first biopsy done.  6 months ago, a year?  Anyways.  A letter arrived about 5 weeks ago for another one to check what the cells are doing.  So I went and had it about 3 weeks ago.  The woman who did it said it looked better than last time, but they took two biopsies from different places.  I didn’t think about it again until yesterday in fact when I thought I should have had a letter around now telling me the results.

A voicemail, I need to make an appointment.  I phoned.  I need to have a cone biopsy. 
Why?
I’ll have a look at your notes – it doesn’t say and I’m not a member of the medical team so I can’t tell you. 
Can you find out so I know before booking my appointment? 
Yes.  I or the colposcopy team will ring on Monday.
I then Googled. 

Fucking idiot.  A cone biopsy is carried out to look for/make sure it isn’t cervical cancer.  I am in that place I have never been.  I have never had the worry of a potential (lets really fucking well hope it isn’t) cancer diagnosis.  Diagnosed in a day has so many benefits, I had no idea what was going on!  Not this time.  It’s just an exploratory test.  The words cervical cancer in the test explanation don’t make it an easy one to wait for.  I’m sure I’m fine. My body was telling me for 6 months that something wasn’t right before my leukaemia diagnosis.  I’m tired, as always, but feel fine.  I’m sure I’m fine.

I look after me.  I will go. I will wait for the results and I will pray to god they are fine.

With love and so much hope,

XXX