36 ~ The one where Hayley said goodbye

Hi everyone,

I have been thinking about my blog a lot lately and I have come to the decision that I am going to stop writing. I will still keep this blog online so people can read through it, I hope that people gain something from reading it (whether it be answers to questions, reassurance. etc) and I am always here for people who have questions or anything, just comment or email me.

I don't really have anything to say anymore, my check ups have now been moved to every 8 weeks and everything is going fine...

I have met some amazing people through this blog and I have also made some great friends - who knows where I would be without all the supportive words I've been given. I really can't thank you enough, I still go back and read through my comments and am just amazed at how nice you all are.

I will still check my blog for comments but this will be my last blog post. Like I said, you can still leave me comments or email me (hayleydyer3@googlemail.com) and I will most probably reply. I would love to hear from anyone who has followed my journey, or anyone who is new to it, anyone who want to share their journey, ask questions...whatever. I just like hearing from people.

Thank you again to those who have left me comments and just been there for me, I really really do appreciate everything you have done. You are all wonderful and I wish you all the best.

Love,

35 ~ The one where it was Christmas

Hi all,

Just a short blog post to wish you all Happy Holidays.

I can't believe it's Christmas 2008 already, I know that it will be better than last year and I can't wait to spend it with my family.

Anyway, thank you everybody for the wonderful support and love you've given me over the past year, it means so much.

Lots of love

34 ~ The one where it was a year ago

Check out all that hair!! It needs cutting so I have decided it's time to ring Trevor Sorbie back...I don't want it cut, but I know it needs it as I'm looking kind of silly now.


So, today is exactly 1 year since I was diagnosed. How crazy is that? It feels as though it was yesterday, but it also feels as it was forever ago. It's a weird feeling. It's amazing how much things have changed in just one year.


This time last year I had long hair and I wasn't as fat but it's ok. That's a small price to pay. This time last year I had NO voice. This year I do. Which is great. This time last year I had cancer, this year I don't. Which is the best feeling ever!!

Today I had my 6 weekly check up at the Hospital, same appointment time, same room...eek! But it was ok. I felt alright about it because I think now I wont just think of today as 'the day I was diagnosed', I can think of it as 'the day where I got good news' too. Me and Mum arrived at the Hospital on time...the waiting room was PACKED. So we had a loooooooong wait ahead of us.

After I while I got called in to be weighed, always dread this part. I have lost weight. YAY! 6lbs. Which isn't GREAT but it's better than nothing I guess. That means I've probably lost a stone since I finished treatment. I could do better, but it's a start.
When I walking back in to the waiting room I said "Wohoo! I've lost 6lbs!" to my Mum and then the lady sitting next to her said "Hayley?" and I was like..."yes?" Turns out...I have been emailing this woman since I was having radiotherapy! It was so weird. Louise is lovely though and we emailed each other earlier this year and recently too. She said she felt like she had met a star because she's heard me on the radio and seen me in the paper! LOL. We chatted for a while which was lovely then I got called in for my check up.

I walked in to an audience again. I'm getting used to it now, I think today there was a total of 8 or 9!! I know everyone though so it's alright. I had a chat with Mr Pace and he asked how my throat was feeling and if I'm getting any pain...I do get sore throats quite a bit but he said that's alright and it's just down to what my throat has been through. He felt my neck and everything was ok there....then my favourite man in the world walked in! Haha. My oncologist...he said he only came in to tug my hair LOL. I really do love him. He said that I looked well (aka fat) and said that my 'bow tie' isn't as noticeable now. Mr Pace disagreed and said it's the butterfly effect, not the bow tie! (They mean the tan marks I have from treatment)
I got asked how my voice is, I told them it has good and bad days and it goes if I talk too much. Mr Pace said the only way I could prevent that was to stop talking and I just said "Yeah right, I spent long enough with no voice!!" Everyone said my voice is sounding brilliant and Mr Pace said it's not as 'breathy' as last time. Everyone was really impressed actually.

My favourite part (not!) of the appointment arrived. The lovely camera, Mr Pace asked if I wanted to see...I said no thanks, I don't know why but I just find it weird looking at my own vocal chords...I wasn't completely numb this time so it hurt a bit when it was going in. I got asked to say 'EEEEE' and all I heard was "Ooooh, wooow" - Dr Tahir said my vocal chords look 'beautiful'!! Now that's a compliment lol. The camera wasn't down there for too long this time which I was very glad about because the whole time it's down there I get the urge to swallow and I don't want to do that. It hurt when it came out!!

They said they were really pleased with them and my vocal chords are almost closing together properly. I don't know if they'll ever completely close but I'm happy with how they are doing.

Dr Tahir said I can have an 8 week gap because of 'good behaviour' but he actually means that because Christmas and New Year is coming up. My next appointment is 15th November. I go back to St John's and I really hope that I get to see Dr Tahir again lol.

I think that's all I have to update about health wise.

Oh no, quickly! I am now taking something for acid reflux which is really helping and I think it's making my voice a bit more reliable too. I also got my blood results back and I am slightly anaemic so I am on iron supplements. I do still feel tired quite a bit but it is improving a lot.

Ok...one more thing...I am in the Braintree and Witham times this week. I wrote my own piece for it too so I think everyone who lives in the area should go and buy it. I'm on the frontpage too. Oh...and when you get to the actual article...ignore the minging picture.

Back to work/college soon. Aaaaaaaaaaaaaah. Got to do it though.

Wouldn't it be great if I could win the lottery?????

Bye for now,

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,

32 ~ The one where Hayley had a bit of swelling!

(Horrible picture but I've been sitting here for about 1/2 an hour trying to get a decent one but it wasn't happening. So this will have to do!)


Hi everyone,

Today I had my 6 weekly check up. My appointment was at 9am so we had to leave at 8 because of work traffic. I was falling asleep in the car because I was so tired!

We had to wait a while because there was a meeting going on, I got to see Jean (who I saw quite a lot when I was having radiotherapy, she helped me with the Macmillan stuff!) which was nice. The last time I saw her was in April!! She was amazed at all my hair, everybody is, haha.

I got weighed, I dread this every time I go there - anyway, I went through and I got weighed. Wasn't impressed...but I asked what I was last time and I have lost 7lbs. Which is better than nothing I suppose. I still need to lose a lot of weight, I'll get to that later though!

After waiting longer, I got called in. Mr Pace was in there with the student doctor, Jean, the Dietitian and then the Nurse. When I walked in Mr Pace said "I'm sorry to hear that your hero isn't here today!" Lol. He means Dr Tahir...I wish he was there because I love him...but you should know that because I always talk about him. He should be there next time though. I hope so.

Mr Pace asked if I wanted to look down there while he was looking, I said I wasn't bothered!! But I know that my Mum would want to see so everyone looked by me. He put the spray up my nose (to numb it) and I thought I was going to throw up. It usually tastes horrible but not this bad, I actually thought I was going to puke!! Luckily, I didn't.
Then it (eventually) went numb and he put the camera in there to have a look. His face looked a bit confused/worried so I was staring at it waiting for a reaction and I was really scared! He was just going "hmm" and I was thinking 'Oh God, what's he found?!' lol. Then he came away and said "There's some swelling down there but it might be from straining to use your voice. We'll keep an eye on it." - so that's that! He said to just book an appointment for another 6 weeks time as usual so I guess he's not that concerned...

Guess when my next appointment is? 20th November at 11:40am. Guess what happened at that exact time a year ago?!?! I got diagnosed. How strange is that?!?! I also saw my surgeon who removed my polyp and found my cancer...I don't think she recognised me though. I haven't seen her since she told me I had cancer.

Erm...then we went to see the Dietitian. She just asked me what I eat and said that it sounds fine and that I basically just need to get in to a routine and eat breakfast. She sent me for a blood test to check my iron levels. etc and said that once she'd got the results (should be today or tomorrow) she'll send me some information on vegetarian diets. etc in the post.
We were also talking about me stuffing my face before radiotherapy started (because I thought I wouldn't be able to eat) and the Dietitian laughed and said that I really was one of the very few that was able to eat through the treatment!

While we were in there Adele (my 'cancer nurse') came in and said hi. I haven't seen her for a while either, the last time was when she removed my PEG back in May!!

When she ran in to Mr Pace to get him to fill out a blood test form, she came back in to the waiting room and said that he wants to check my thyroid again as the CT scan I had in August has shown that my thyroid was hit by the radiotherapy too.

So, I went off for my blood test. The woman was VERY quick. Like, I literally went in there and 2 minutes later I was out. She wasn't very chatty either, lol. As we were driving out of the Hospital we noticed her standing out the front having a cigarette so I guess I was the last one before her fag break!

So yes, my appointment went OK. I forgot to mention my painful armpits (again) - I'll just keep checking them for lumps.

I have been very busy lately, last Monday I went away to Bournemouth with the Youth Cancer Trust...it was GREAT and I made some great new friends. I've been invited back so I think I'm going to go again next Summer so we'll have nicer weather and will be able to swim.

I got back from the Holiday last Friday and on Saturday morning I went to stay at my Auntie's and got back last night. And now I am just in the middle of packing as I'm going to stay with my friend at her University until Sunday! It's great that I'm doing so much but I'm blimmin' knackered. Not used to doing so much, but I guess it's good that I'm getting out and I'm not stuck in as much anymore.

I still get tired easily, by the way! I am sleeping crap too, I have to wait until I am literally nodding off before I try to. The tiredness is getting better though.

My voice has been OK, still has good and bad days. I still get funny looks when I go out and it annoys me a bit, but I guess I would do that too if I was someone else listening to me. I do wish that I could have a voice that didn't stand out but that's life and I'll get over it. I am so grateful that I still have my voice...don't get me wrong!!!!! It got frustrating when everyone was singing karaoke on Holiday and I couldn't. Oh well. Some would say that's a good thing, haha.

My hair is getting longer and longer and it looks stupid...but I'm trying to get it as long as possible (Without it looking too ridiculous!) before I get it cut.

OK. I have gone on enough. I guess I will update soon. Maybe after my next appointment in November, maybe before.

Leave me lots of comments. I'm not getting as many as I used to. Am I boring?

Hayley

31 ~ The one where Hayley hadn't updated for a long long time

You don't get a picture of me taken today because I look like crap - I'm not well at the moment and trust me, I'm not a sight you wanna see! So, you get one taken last week or the week before with my baby cousin, who is also going to be my Goddaughter as of next month!
My head looks huge in the picture lol.

Well, I can't even remember the last thing I wrote about. Shall I go in to detail about my appointment I had last month?!

Basically, me and my Mum waited for ages in the waiting room. Mum was REALLY nervous, I was fine because I just KNEW that I was going to be alright!! We went in and Dr Tahir was there, the best oncologist in the world. I was really happy to see him because I hadn't seen him since April. He said that I looked good (aka fat) and he couldn't get over how much hair I had - he kept tugging it lol.
My speech therapist was also there, along with Mr Pace (my consultant), Eve (one of my fave nurses) and a student Doctor.
I had the camera down my throat and I got to look this time - I can't remember what they looked like when there was a tumour down there so I didn't really know if it looked good lol. Everyone was really pleased - Dr Tahir said it looks so good it doesn't even look like I had any radiation. I had to say 'eeeeee' and I could see my right vocal chord moving, my left one moves too but not a lot. Everyone said they looked really smooth and then said everything was all good.
Then we were just chatting and to be honest, I completely forgot the reason we were there - so my Mum asked about my CT scan and Dr Tahir said "Yes, they look clear" and so we asked what we could say and he said "That you are in complete remission" - hell yeah!!!!!
I now go back every 6 weeks. Next appointment is on 2nd October.

My hair is growing, growing, growing. I look like Elvis! It's still curly at the back and black...people keep asking me when I'm going to get it cut. The answer is not yet. I want to wait until it's longer before I get it cut, it's all even and stuff...it's just hard to manage at the moment but apparently it just goes through that stage! I might look stupid but I'm not getting anything cut off because it's taken blimmin ages for it to grow this much lol.

My neck is still quite stiff and I still have a saggy chin, lol. But it's getting better I think...it's definitely worse in the mornings. I put aquous cream on my neck every day still, it's just a habit! I don't know how long it's going to take for my skin to go back to normal colour! I don't think it's really noticeable anymore, maybe to people who haven't seen it before but I'm not bothered.

I'm still really tired, but I think it's getting easier. It's not a drastic change but I can tell that I don't get worn out as easily as I was.

My voice - well it's ok. It's improving and sometimes it still has really rubbish days. But I think it always will. It usually goes when I'm trying to talk on the phone when I'm walking somewhere, or if I'm trying to be louder because someone can hear me. I haven't been to speech therapy for a while because she is away, my next appointment is on the 8th October I think. She seems impressed though and has given me more exercises to do (which I keep forgetting to do...oops) - she said that she wants to work on the confidence side of things more, ahhhhh. It's scary! She said one day she might get me to phone someone (I don't know) while she's watching and listening lol. I don't mind talking face to face to people, it's just the phone I hate because my voice sounds horrid. The other day when I was at my Auntie's the Vicar came over (about the babys Christening) and said I have a sexy voice!! Haha.

On Monday I am going on a Holiday to Bournemouth with the Youth Cancer Trust (www.yct.org.uk) - I'm really looking forward to it. I get to meet one of my online friends (Katie) too which is exciting. If you want to visit Katie's website please go www.freewebs.com/ktlouise85.

Lastly, on Saturday I was meant to be doing the Mouth Cancer Walk but I don't think I'm going to be able to do. I haven't been well for a few days and don't think I'll be feeling up to it on Saturday. It is a shame, but I will do it next year as hopefully I wont be ill.

Ok, that's everything.

Bye!

30 ~ The one where Hayley said bye (for a while)

Hello,

I am going away for a while (probably a week, maybe longer...see how I feel!) - I promise I will write an update when I get back. I haven't done one for a long, long time and there's a lot to say. As usual!

But anyway, I will be back soon.

Oh, thank you by the way for the lovely comments I got on my last blog post. Great news isn't it?!?!