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

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

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