Tuesday, 4 November 2008

33 ~ The one where it was that time of year

WARNING: Longest blog post, ever.


Basically this post is going to be all about what happened up to my diagnosis seeing as this has been going on for a year now. Crazy, huh?

I figured I might as well write now because my appointments are 6 weeks apart now and that's a bit of a big gap to not update in. I'll do a quick (yeah right!) run down on the whole voice thing - I can remember when it started to go funny. I was at school and every time I had to say 'here miss' my voice would go funny. Maybe it was because I was nervous? I don't know. But then I think it was once I left school (2005) I started to really notice it. When I tried to scream, nothing would come out and when I sang sometimes nothing would come out. Or when I shouted.

That went on for a while and I think it was probably 2006/2007 that I started to get really conscious about my voice and I lost all my confidence because pretty much everyone would ask me if I had a sore throat. I didn't though! It got to the point where I couldn't sing at all anymore and sometimes just nothing would come out. People said that is sounded as though I was whispering! People used to say that it was probably just the way my voice would be.

One day I read an article in a magazine and it was about a man who lost his voice, was diagnosed with throat cancer and then died. It really scared me (and I have refused to read those magazines since!) and from that moment on I was convinced I had cancer!

But then at the same time I thought, no. I'm 17/18, I couldn't possibly get that sort of cancer, could I?

Then, I started waking up with sore throats every morning, but I thought maybe it was because I smoked.

FINALLY in August 2007 I went to the Doctor, I was SO nervous. My Mum had told me before to go but I refused, thinking back now it was really silly of me because not going just makes things worse doesn't it? Anyway, my Mum came with me and we went in and explained and he looked down my throat and said it looked fine. He then said "Come back in 2 weeks if it hasn't changed" - to me, that didn't make sense. If it hadn't changed it so long then why would it suddenly change?? I think my Mum then said that she wasn't happy with that and made him refer me to the ENT at the Hospital.

I think my appointment was in September, we went in...I said my name at the reception and the first thing out of one of the nurses mouth was "Oh dear, you DO need to see us don't you!" (cue me crying) - we waited and I finally got called in. I saw a nice man who asked me all about it and then announced he was going to put a camera up my nose and down my throat. I FLIPPED out, thinking back it was really immature and stupid of me to do because it was nowhere near as bad as I thought it was going to be. After about half an hour of trying to persuade me, I let the Dr do it. He looked down and told me that I had a polyp on my left vocal chord and that a simple operation would do the job! I would have to go on voice rest for a few days, then my voice would be pretty much normal. I was SO happy and SO relieved. I did notice that on the form he had in front of him it said 'Purpose of surgery' and he wrote down 'To find nature of polyp' - hmm. I didn't say anything, we just went home, told everyone the good news and waited for my operation date to come through.

October 2007 I got a letter in the post saying my operation was on 17th October. I had to go in on the 12th for a pre op assessment...I went in and my BP was really high and I was told I had 'white coat syndrome', aka fear of hospitals and doctors! Which was (note was) true. I was told by the Doctor that I should quit smoking. But it was up to me. So that night, I went and had my last cigarette and I don't know if I had the intention of starting again after I was recovered, but I haven't touched one again. I thought that quitting then would be the best option because who knows what could have happened if I kept smoking!!

Roll on 17th October, I was very nervous and scared about going under general anesthetic. But I did it, came out of the theatre and I was told to not speak for 2 days. I remember waking up with an oxygen mask on and I was coughing so hard. I really wanted some water but I couldn't ask because I wasn't allowed to speak! I went down to the ward and just waited to be discharged. Finally had some toast and tea (which made me choke) and then I got bored so my Uncle asked if I could go home, the nurse said yes and I was discharged.

I went on voice rest and I was strict with myself, I carried a white board around! Haha. After 2 days I tried to speak and nothing would come out. I was peed off but then thought it probably needed time to recover and that it would come back soon.

After a while, I got a letter in the post about speech therapy. My appointment was on 31st October (I only remember because it was Halloween and I went to see the Graham Norton show), I went in and met my speech therapist. She was really nice and she was trying to get me to make these noises. Not ONE thing would come out and I got so frustrated with myself and burst in to tears. How embarrassing! My speech therapist said that it was ok and that it would take time. She said to keep trying to make noises at home and said she would see me again soon. She told me that it's not too good to whisper but she understood that it was the only way I could talk. So I just whispered (as little as possible.) I have recently found out that I was never meant to be referred to speech therapy in the first place.

Apparently, someone else had the same operation as me on the same day and my surgeon got mixed up and referred me instead of the other woman! But I guess it's good because my speech therapist was the one who went back to my surgeon after our appointment and said that something definitely wasn't right. I wonder what would have happened if my speech therapist didn't say that?

I went home and kept trying to speak. No luck. I think I was worried, but I kept telling myself that I only had a polyp, it was gone and my voice WOULD come back. My next speech therapy appointment was on the 6th November. But, that morning I got a phone call from my ST (speech therapist) saying that she had to cancel because something had come up.

The next day (the 7th) was my post op appointment. My Mum and I went to the Hospital and met my surgeon. I must say, she didn't have the happiest expression on her face and I thought maybe she was having a bad day! She asked me how my voice was, I explained, I can't really remember now how it was worded but she basically said that I wasn't meant to be discharged on the day of my operation. The reason being because she needed to come and see me as she had something to tell me. I remember my stomach flipping and I could see my Mum's face thinking 'uh oh'.

She went on to explain that when she was operating she saw something 'untoward' down there and she took a biopsy. She sent it off to London to be looked at by a Professor. Apparently, he phoned her to double check my date of birth because he was shocked that it had come from an 18 year olds throat. My surgeon went on to speak about abnormal cells and she did mention the word cancer.

To be honest, I can't actually remember what else went on at that appointment! I don't think I took anything in really. I was told to go back on the 20th November and that would be when they'd know.

I went home that night and I remember sitting in front on my computer and I just had this feeling in my stomach, I knew that I had cancer.

The next day I got another phone call from the Hospital saying that I had a CT scan booked for the 9th! I couldn't believe how fast it was happening really. It was strange! And it still is! I remember all the dates because I wrote it down on a diary site I write in and I'm just reading back about the CT scan day. I said 'I have a feeling something will show up in my neck because I've been getting this pain there for the past couple of months but I've just ignored it. It seems to come on when I'm stressed though, it's weird. It also hurts a bit when I yawn...maybe it's my glands or something?' Weirdly, I also used to notice that when I cried I used to get a pain in my throat and neck.

I went for the CT scan, I also started noticing that I was getting out of breath even more than normal around this time.

A few days later, I got yet another phone call saying I had to go and have an MRI scan on the 16th of November. Oh fun!! I then REALLY knew that I had cancer...but the person on the phone said it was because they just needed to see deeper. I went in on the 16th and I have to say, the MRI wasn't the nicest experience ever!

I had to have a big cage thing locked around my head (to keep it still) and I the only thing I was worried about was if there was a fire...how would I get out?! I got given a (crap) choice of which music I wanted played in to the earphones as the machine was quite loud. I chose KT Tunstell and I remember laying there having the scan done and just counting how many songs had played. I think 10 were played in total and they're about 3/4 minutes long.

At this point, my voice still hadn't come back. I still had a feeling that it was cancer but sometimes I'd think 'Nah, it can't be!!' Why would an 18 year old, who only smoked for a while and hardly drank get throat cancer?

20th November 2007. Me and my Mum went to the Hospital and I think we had to wait for quite a while. I walked in and my surgeon was there along with one of the wonderful Nurses, Linda. As I was walking in she said to me "Have you been getting out of breath lately?" and that's when it was confirmed for me. I can't even remember he exact words but she said that I had cancer. I remember my Mum's face (I had told her she wasn't allowed to cry if it was cancer lol) and I think I said "Oh crap!" Then I asked what was going to happen next.

I asked whether the cancer was caused through me smoking and she said she didn't know. But she doubted that smoking for only a few years would have caused something like that. But no one knows for sure and I don't think we ever will.

Linda then took us in to the room next door and said she was just as shocked as we were. It didn't really seem real I don't think. I got given a little ring binder and loads of books on cancer and head and neck cancers.

After that, I went and sat in the car and sent a text to my friends and family. I think I was quite blunt with what I said and I didn't mean to be, I just didn't know how to tell them. I think I just said "Yeah, I have got cancer. I'll tell you more when I know more. Don't worry I'm not going anywhere!" - I can't even imagine how shocked everyone must have been. Poor things lol.

Then my Mum and I drove home, I remember the song that came on to the radio. It was Alicia Keys and some of the lyrics were 'I don't worry cos everything's gonna be alright' and that's when I knew I really was going to be alright.

I'll leave that here now because you're all probably fast asleep after reading all that! Haha.

Bye for now,

10 comments:

  1. I remember all to well when you were first diagnosed by reading your moms blog. You are a remarkable young lady!

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  2. That can't have been easy to write Hayley! You're one fab, brave young lady.

    Hugs

    Rosie
    xxx

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  3. I remember this all so well. You 'walked' a brave journey Hayley - and I am so proud of you and the remarkable way you dealt with it all.

    I love you sweetheart.

    xxxxxxxxx

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  4. Hi Hay, How you doing? Only uncle Petey popping by! I forgot you told me you had done another blog entry, i have just seen it on me emails!
    Just thought i would say that was a great entry...... i remember it all so well1 The last year has been totally mad and im sure your glad its over and your recovering well! Well done for the way you coped with it all Hay - your one tough bitch!
    Love you very much, and see you soon (In about 2 hours LOL)
    Take care

    Uncle Pete xxxxxxxx

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  5. Much better pic this time! You are looking great!

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  6. I'm just stopping by to say hi since getting back from our trip. I remember so well reading your Mum's journal when you were first diagnosed and thinking what a tough road ahead you had. But, as I was about to learn from getting to know you a bit through your journey....you were tougher!!! You are an inspiration to me Hayley, and I feel small in saying I can't tackle my weight peoblem when you have kicked the crap out of cancer and sent it on it's way! So, I'm going to try harder this week, I promise...you are my hero :)

    Love & Pooh Hugs,
    Linda

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  7. Hayley you are one very brave young lady,I have been watching my own daughter deal with her problem and chemo and I am so amased at you both, so many blessings on you and your lovely mum

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  8. Hey Hayley - I just catch your comment to me. Thank you for the advice. Right now I want food to just taste normal again. Nothis tastes good - coffee is sucky, tea's now right and water is just plain aweful.

    Started a new drug last week and I feel like a bag of shit right now.

    I have added your link to my blog.

    ~Inez

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  9. What a journey Hayley! It must've been quite a feat writing it all down, but it's great to document it and see how far you've come. It seems such a short time ago that you told me you had cancer, but look at you now...it's over and you did bloody fantastically and I will ALWAYS be proud of the faith and dignity with which you fought it.
    Love you lots xxx

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  10. Hayley,

    #1: Thank you for checking out my blog. Your comment to my recent post made me feel good--I felt validated by someone who really DOES know how I feel.

    #2: I loved checking out your blog today. This post was particularly interesting to me because I ALSO texted everyone I knew when I found out I was going to have brain surgery (I didn't know I had cancer at that point). Needless to say, everyone I knew freaked out, so I can understand how your friends and family must've reacted.

    Sisters in MRI,
    Liz

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