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. 

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. 

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

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

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

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

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