Wednesday, 24 December 2008

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

Thursday, 20 November 2008

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,

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,

Thursday, 2 October 2008

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

Monday, 15 September 2008

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!

Saturday, 30 August 2008

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?!?!

Thursday, 21 August 2008

29 ~ The one where Hayley had the 'big' Hospital appointment

Just a quick one.

Had my Hospital appointment today to get my CT scan results...and exactly 9 months and 1 day after being diagnosed, I get told that I am in 'complete remission'  - There's no cancer left!

WOHOO!!!!!

More another day. Internet still isn't connected at the new house.

Hayley

Friday, 25 July 2008

28 ~ The one where Hayley had another check up

Hi everyone.

My hand is there in the picture because I am trying to hide my horrible chin!! lol

Firstly, thanks for the Birthday wishes. My day was alright, we went up to London so I could get my hair cut...but we got there and he said that he can't do anything with it because it's too short. And if he did cut it, it would be a waste of growth! lol. So, I have to ring him back once it's longer and he will definitely do it then. When I got home I went to the pub with a couple of my friends and while I was there, I got told to be quiet!! Which is saying something because I didn't think my voice was that loud, haha.

We are moving house tomorrow and haven't had internet connection since Tuesday and I don't think we will for another couple of weeks. I am at my friends house right now. I am also going up north again on Monday and will be coming home on the 1st August. 

Yesterday I had my monthly check up with Mr Pace. He felt my neck...said everything was fine. Then the phone rang and it was my blood test results. My thyroid levels came back normal so I guess the tiredness is just still from the radiotherapy...or probably because I am lazy lol. Then he put the camera down and spent a while looking and said "It looks good' - he says that everytime! lol. Then I asked about my scan and he said that it will definitely be before my next appointment which is on the 21st August. 

My next appointment will be at St Johns Hospital so Mr Pace can take a picture of my throat because they don't have that equipment at St Peters. He said that Dr Tahir will be there (YAY!!!!!) so I am really happy that I get to see him.

Afterwards, I had speech therapy. I went up and Hilary called me in and then I told her when my next appointment is. She said that it will be another appointment where there will be about 10 people in the room. I had that once before and I was really shocked when I walked in to the room, lol. So at least now I have warning! There will be Mr Pace, Dr Tahir, Hilary, two nurses, a dietician, the lady from macmillan, maybe a junior Doctor and then another lady (can't remember why she'll be there) and finally, Adele. Who was my cancer nurse. Plus me and my Mum, so it's going to be packed!! I hope everyone enjoys looking at my vocal chords lol.
The rest of speech therapy went ok, we didn't really concentrate on my voice because I felt a bit light headed so we just spoke about things really. Oh, we were speaking about my weight and Hilary said she'd tell the dietician so she will speak to me on the 21st. Hopefully she'll help me lose weight...I need to!
My next speech therapy is on 14th August.

This morning my Mum woke me up and said that Eve (a nurse from the Hospital) phoned and said that the 'big' scan is on the 6th August - apparently I should have had one in April? I know I had one in March...I think it was in March anyway. I think I am having a PET scan because I have to go half an hour before to drink the stuff. I've not had one of those scans before! I bet it tastes rank. I don't know when I will get the results, probably on the 21st? I hope it's sooner than that because two weeks is a long time to wait. So...wish me luck!!

Ok, I am off. I will probably update again next month sometime.

Bye bye.

Friday, 11 July 2008

27 ~ The one where Hayley was 3 months post treatment

The first picture I have posted with no bandana on!! My hair is starting to get curls at the back now and it's still really dark.
Yesterday was my first day of not wearing a bandana all day - I haven't worn it today either. I feel naked without one on! lol. But I just look stupid with a bandana on now because you can blatantly see I have hair. My sideburns are nearly long enough to tuck behind my ears, yay!

So yes, today marks 3 months since I finished treatment. I didn't even realise it's been so long until I looked at the date last night. I was shocked! It's weird...because it feels like I only finished about a month ago - but then at the same time it feels forever ago. Very strange!

I had a blood test last Friday to check my thyroid, I haven't heard anything back from Mr Pace so I'm guessing he either hasn't got the results back yet or there's nothing wrong.
I also haven't heard anything about my scan, so I reckon it will be in August now instead of this month.

Yesterday I had speech therapy, it went really really well. My speech therapist is really impressed with me and she said that because my vocal chords have had so much trauma she didn't think that my voice would be as good as it is now! (Did that make sense?) - I had to (try to) sing Nursery rhymes yesterday. I was so embarassed lol. But, I did it and I was glad that she was doing it too and not just asking me to do it on my own! I didn't really sing them properly, but I said them and had to (try to) go high and low in the parts that needed to be. She also had me doing some other weird stuff lol.
She said that Mr Pace said my vocal chords are smooth and he can't see any bumps. She also said he told her that my my left vocal chord is moving more than what it was last time...so here's to hoping at some point my vocal chords will close together completely like they're supposed to!
I have a task to do this week, well three really. I have to phone my speech therapist 3 times until I next see her and leave her a message. It's a confidence building thing! Lol. I did it last night and it wasn't so bad, I don't mind leaving answerphone messages...or talking to people I know. I just don't like talking to people who I don't know and then they ask why I've got a weird voice or whatever. I just can't be arsed explaining the whole story and if I say "Oh, I had throat cancer" then they are probably going to feel bad for asking me!

We talked about the sore throats I get in the morning and also, when I wake up it feels like I have a block of mucas (yuck) at the back of my throat. It makes me want to gag if I eat or drink too soon after waking up. She said that it's normal and it will probably happen for the rest of my life lol. It doesn't bother me though. I can't remember what else we talked about...hmm. Oh, I have to keep my neck moving because it can become stiff (especially when I'm older) - I think that was it!

I also have to sing Nursery Rhymes to keep my voice going lol. And just talk a lot (which I do anyway!!) - Luckily, I babysit on Monday's so I can sing Nursery Rhymes with the little boy, he wont think I'm weird.
My next check up is on the 23rd July with Mr Pace to look down my throat...it'll actually only be 3 weeks after my last one but I am away when the 4 weeks would be up. But it kind of evens it out because last time I went 5 weeks between appointments if that makes sense.
After my check up, my speech therpist just said to go up to the therapy department and see her. She said she'd like to come down and look at my vocal chords and I'm not bothered...she can have a look lol. But, she said she'd do it another time instead.

I am having my first haircut on Monday! Well, actually...hopefully nothing will be cut! But I am going to Trevor Sorbie's salon in Covent Garden and he is going to give me some tips and stuff on what to do with short hair as I have NO idea. As the last time I had short hair was when I was about 18 months old lol.

It's also my Birthday on Monday. I will be 19! I'm not really doing anything for it...just going up to London to get my hair done. I would get drunk but I'm a bit funny about drinking alcohol now because I know it can cause throat cancer too lol. I will drink sometimes, but not how a 'normal' 18/19 year old would! Haha. Who says you have to drink alcohol to have fun anyway? (Well, it does make things a bit more fun!!)

I will probably update on Monday just to say Happy Birthday to myself, lol.

Thursday, 3 July 2008

26 ~ The one where Hayley went to the Hospital...again.




I've run out of quotes to use!!


Hi everyone,

I'll try to make this quick because I have to go out in a minute. But, knowing me it will end up really long anyway!

I had my monthly check up today, I had to wait a bit longer than I usually do but I'm not bothered. Mr Pace asked how I was and I said I'd been feeling really tired and I wanted to know if I could have a blood test to check my thyroid because apparently it can be affected when having radiotherapy.
So he gave me a blood test form and I went to go and get it today but it literally closed 2 minutes before we got there, annoying!! So, I'll go tomorrow morning.

I also asked when my scan will be and he said he doesn't know but he'll contact me via the post once he finds out.

Then he felt my neck, he said it felt fine. He confirmed that my double chin is lymph fluid (which is common) and that it should go away eventually. I can't wait!

Then I went over to have the camera done, he looked down there and said "It looks really good" and said that he was please. Mr Pace is a man of very few words!

That was pretty much all that happened, the computers were down so I don't know when my next appointment is but I'll get a letter in the post. Mr Pace said if there's any problems with my blood then he'll let me know.

He's going to speak to my speech therapist, Hilary and tell her what's going on there down there, I have an appointment on the 10th with her. He did notice that my voice has improved a lot since I last saw him.

Hmm...I've forgotten what else I was going to say.

Oh, two pictures for you...one of my hair and one of my neck.
My hair looks darker in person, enough of the thickness...more of the length please!!


One last thing - everybody in the UK - Buy Love it! magazine on Tuesday the 8th July. I'm in it, eek!!

I've got to shoot off,

Bye bye!

Wednesday, 2 July 2008

25 ~ The one where Hayley loved her blogs new look



Hi everyone,

Just quick one!

Just want to say thank you so much to Krystyn for giving my blog a makeover. I love love it!! Here's a link to her blog by the way, go say hi and tell her how much of a good job she did - http://krizzydesigns.blogspot.com/

I have my monthly Hospital appointment tomorrow afternoon, wish me luck!

Friday, 27 June 2008

24 ~ The one where Hayley hadn't updated for a while

"Obstacles are put in our way to see if what we want is really worth fighting for."


I thought maybe it was time for an update seeing as it's been almost a month. I was going to wait until next Thursday as that's when I have my next Hospital appointment but I have a few things to write about anyway, so why not do it now!

I'll start with speech therapy.
I've been twice, I have missed two appointments because of not being able to get to the Hospital, my next appointment isn't until the 10th July.
It's going really well though, I am able to use my voice all of the time now, it's still not very loud and it's quite 'breathy' but I'm just glad I have my voice back. It goes a bit when I get tired because I have to put in a bit of effort to get it to come out properly as only one of my vocal chords is working properly at the moment...so I guess (and I'm hoping) it'll improve as time goes by.
I have exercises to do which I make sure I do little and often, I also inhale steam sometimes because it's meant to help and I also sip water. I keep wanting to clear my throat but I was told not to do it so I have to sip water instead!
When I speak it's just in one tone, meaning when I am excited about something it doesn't sound like it! lol. Hilary (my speech therapist) phoned me yesterday and she mentioned how she can hear a different tone in my voice which is great and means it's definitely improving!!
She's not free until the 10th of July but she said that works out well because next week Mr Pace can look at my vocal chords and see what they're doing when I'm talking and then he can report back to her and we can go from there.

I've been feeling well, not that I've ever actually felt ill! (Apart from my first 3 lots of chemo) - quite tired lately though. Maybe the tiredness side effect kicked in a bit delayed! Last week and the week before I was really tired, I couldn't really be bothered to do anything but this week I'm feeling a bit more awake which is good. I thought after doing the Race For Life on Sunday would knock me out for days but it didn't and I didn't even ache afterwards!!!!!

So, we did the Race For Life on Sunday (22nd June) - it went really well. I was a bit worried I'd collapse because I'm so unfit, but I didn't. Phew! I was told it took me 40 minutes. I walked all of it...didn't want to push myself too much! It was a really nice day, quite hot actually and I got a bit of sunburn on my face (oops)...when we left in the morning it was freezing so I didn't even think it would warm up. I loved the little goodie bag I got afterwards, the medal too!
Here's a picture of my Mum, me and my friends, Vix and Jodie on the day. Thank you girls for doing it with me!!


I'm doing the Mouth Cancer Awareness walk in September. This time it's 10k, it's in Hyde Park in London. I'm quite looking foward to it, I'll get to meet a few people who I've met through my blog which will be great. It's exciting! I have a little 'sponsor me' box over on the right hand side of my blog. I have plenty of time to get sponsors though and I'm trying to think of fundraising ideas we could do.

I want to say thank you to those who sponsored me for the Race For Life by the way, I managed to raise £200 which I thought was brilliant!

Hmm...not sure if I have much else to say. I'm not going to post any more pictures of my neck because it seems to be staying exactly the same, any ideas how long it will look like this for?

My hair is growing, growing, growing...just waiting for it to get a little bit longer so I can actually do something with it. I have been out a few times without my bandana on but I still wear it sometimes. It's so weird not wearing one, I will eventually stop wearing one. Just not yet!!

I have my monthly Hospital appointment on Thursday (3rd July) - I'll ask then when my scan will be. Hopefully it'll be in July sometime. That's what Dr Tahir used to tell me all the time.

It's my Birthday soon (14th July, all cards and presents welcomed ;))

Hayley

Thursday, 29 May 2008

23 ~ The one where Hayley had a Hospital appointment

Optimists convert stumbling blocks into stepping stones.
~ W. Howard Wight, Jr.



Firstly, I'd like to say thank you so much to those who have sponsored me for the Race for Life walk I'm doing in June. I am so grateful!
So far I've raised £133 online and £20 offline! I'm chuffed to bits. Just because I've reached my goal (£100) and gone past it doesn't mean you have to stop ;) Haha.
I need to start walking to get in some practice for this walk, I keep saying I'll do it but I just keep putting it off!



General update first and then I'll get to my appointment today.

Throat feels completely fine, I have been waking up with a sore throat lately but I think that has something to do with TALKING (yes, you heard me...) - my voice is coming back! I've managed to use it pretty much all the time for the past 2 days. It's so exciting!! It sounds a bit rubbish but I think it actually sounds better than what it did before I was diagnosed. It does go sometimes but I suppose that's just because I have been whispering for the past 7/8 months.




The skin on my neck is all good, I still have marks but it's faded really well and now it just looks like I need a wash or something! Lol. My back has still got the weird marks on it (from where the radiotherapy went through)...I bought some tops the other day and got home and realised that they'll show off the marks on my back! Oh well!




This is my hair!! It looks darker in person...it's amost black! It feels like it's taking forever but I suppose it will. It's taken 3 months to get to this length so in August hopefully I'll be able to do something with it! I blow dried it for the first time the other day and it went CRAZY! I couldn't flatten it down. This morning I blow dried it again and my sideburns (grr) were sticking out sideways, it was really bad!! I had to wet them down and REALLY hold them down for about 5 minutes lol. I've still not got the guys to go out without a bandana on!

On to my appointment! Well, it was at 2pm and I was Dr Pace's first patient so I got in the room pretty much straight away which was good because I don't like waiting! I went in, sat down, he asked the usual (how's the throat, can you swallow, how's the voice) - he noticed that my voice is coming back! I told him that I'd been waking up with sore throats for the past couple of days, so he looked down my throat (and used that nasty metal thing to hold down my tongue, hate it!!) and said it looked a bit red. I asked if it was maybe because I've used my voice all day yesterday and today and he said possibly!
I also told him that I'd been getting pains in my neck and near my left collar bone (this used to happen before I was diagnosed) and he felt my neck quite a few times and said that he couldn't feel nothing which is good news.
Then, he asked me which nostril I'd like the camera up (neither, thanks!!) and I said the left (always the left lol) so he put the numbing spray up there, I did the usual....sniffed and swallowed! Then I went over to the chair and he got the camera ready, I held my Mum's hand (thanks Mum lol) and he did what he had to do. He asked me to say 'EEEEE' and it actually came out for the first time...even before I knew I had cancer my voice wouldn't let me do that! Lol. He didn't say much and took the camera out. I said "ooh, that's the worst bit!" and he said "Well, I can leave it in there if you'd like" I was like "Erm...no thank you!" Lol.
Mr Pace then went on to say that everything looks good down there! There's no longer any swelling so going under general anesthetic and getting a biopsy isn't neccessary!! Wohoo!! He said that he's really pleased with it.
He said it's alright go ahead with speech therapy so I sent Hilary a text but she hasn't got back to me. Hopefully it'll be soon! Mr Pace-Balzan said that my voice wont probably be 'normal' because the tumour was so big and there's probably some scarring from when I had the polyp removed and from radiotherapy. But I don't care...I am grateful for a voice right now after not having one for so long.
I still don't know whether I'm in remission or not because I've not had a CT scan and the radiotherapy is still getting rid of the cancerous cells apparently but I'm happy.
I go back in 5 weeks (July 3rd) for another check up.

Do you remember the lumps I got in my armpit? Well, it KEEPS happening and it's always in the same place. I wake up one day and my left armpit aches and then the next day the lump usually appears and by the day after that it's gone again! Yesterday night I found a bigger lump lower down though, but now it's gone. It's annoying because when I go to show someone the lump is gone so I feel like they think I'm making it up or something! Lol. My armpit is quite painful today so if it still hurts tomorrow I might go to the Doctor about it.

Okey doke, that's me done! I'll update again in about 5 weeks after my appointment, or if you're lucky I might update before then! :)

Thanks everyone for all your support, I love reading your comments. Don't stop them!!

Hayley

Wednesday, 21 May 2008

22 ~ The one where Hayley asked a favour

Hi everyone,

On 22nd June me, my Mum and my friend, Kirsty are doing the Race for Life in Hylands Park, Chelmsford. Obviously, I wont be running it because I am WAY too unfit for that, so I'm going to walk it!!

I would be SO grateful if you could sponser me, even if it's just £1.

Also, if you want to sign up and do the Race for Life yourself then go to http://www.raceforlife.org.uk/ - it'd be great if I could see some of my blog readers at the Hylands Park one too!

One of my blog readers, Rosie & I have made an arrangement! Rosie is going to make a notebook (which is guarenteed to be amazing, I have one myself!!) for a raffle. Basically, who ever sponsors me (£2.00 or over) will go to Rosie's blog, leave her a comment and then in the end she will randomly choose someone and they will win the notebook! Sounds like a good idea, yes? So come on guys...do it do it do it!!

Anyway, just click 'donate' to sponsor me:



Thank you,

Hayley

Edit Here's the notebook that Rosie made for me. I absoloutly love it!

Thursday, 1 May 2008

21 ~ The one where Hayley said good riddance to her PEG

'I am, and always will be a survivor
I will conquer anything that dares to cross my path.'
~Merci lujan


Today marks three weeks post treatment! I was expecting the '2 week peak' and I waited and waited and guessed it just wasn't going to happen! I think the last week of the treatment and the week after were the 'worst' and even then, it wasn't that bad at all. My throat felt quite sore but painkillers helped and of course, it didn't stop me eating. I hope that no one thinks I'm rubbing it in lol. I do feel very lucky (I think I deserve some good luck!!) and I am grateful that I haven't had it too bad with the side effects of my treatment.

The skin on my neck is fine, it just looks dirty!! It's not though, lol. It's not sore at all anymore. This is a really bad picture!

My hair is getting longer...if you can call 1/8th of a millimetre long anyway!! I can't wait for it to get long enough so I can actually do something with it.

Voice isn't coming out but we'll get to the reason in a minute!

I got a letter in the post last week saying that I had an appointment on the 15th of May for a check up, camera down my throat. etc - origionally the appointment was at St. Johns Hospital which is where I was diagnosed and I HATE going to. But, it was changed to St. Peter's Hospital because Adele overheard Dr Tahir telling Dr Pace that St. Johns holds really bad memories for me and I dread going there. Aww. I think it's nice that they changed it for me...

My PEG had been causing me some pain over the past couple of days, I presumed it was because I've put on so much weight and it felt tight...so my Mum phoned Adele for me and she said to go in and see her and she'd loosen it for me - me and Mum ended up going to the wrong hospital today (long story) but Adele kindly said she'd come over to the Hospital to meet us! We waited for a while and my consulant (Mr Pace Balzan) was there today and he said he'd see me. So I went in to the room and he asked how I was and everything and I asked if I could have my PEG removed (because the ward sister said to ask him as I haven't used it and it's just there for no reason now! By the way, hi Eve if you're reading this!) and he said he'd look down my throat with the camera to see if my throat was still swollen. etc.
So, I have the lovely camera up my nose and down my throat...my favourite part of my Hospital visits!! Nah, it's not so bad. I have to get used to it anyway cos it's going to be happening every month for the next year and then every 2 months and so on. He looked down and there and said that there was still some swelling around my vocal chords (hence having no voice still) and that it looked ok and it was alright to have my PEG removed!! Which, I was extremely happy (and a bit nervous) about!!!!!
Mr Pace also went on to say there's no point me going back in 2 weeks on May the 15th so he's changed my appointment to another months time (May 29th) which is great. So, basically today I just had my 15th May appt. 2 weeks early lol.
He said that if there's still some swelling down my throat they may do a biopsy just in case.

After that Adele took me in to another room to look at my PEG, she said that yes, it was tight. So I was right, I am getting fatter! Lol. She double checked if it was okay to remove my PEG, came back and told me that I have two options of removal.
1) Just pulling it out (NO THANK YOU - my Mum accidently pulled my PEG last week and that hurt enough!!)
2) What they call 'cut and push' - which is where they literally cut the PEG tube and push what's inside, inside lol.
I opted for the 2nd choice...I asked if it would hurt and Adele said it might but not as much as the first choice would have lol. So Adele checked that the PEG was still moving freely (which hurt a little) and it was so, she cut it and loads of water came out lol. That's because I flushed it just before I left for the Hospital....then she pushed on my stomach and said that the little bit inside would pass naturally (you catch my drift) and put some dressing on it. The hole looks like a second belly button, I got the whole thing on video. It's funny lol. Now I just have a little hole and all I'm not allowed to do is have a bath 24 hours afterwards so it's all good. I'll probably have a scar there but I'm not bothered.

I don't think there's much else to say, I'm not sure when I will update again. I am going up north to Glossop in Derbyshire for a while, have to be home for the 16th of May because that's when my baby cousin (and God Daughter) is arriving and I HAVE to see her the day she's born. I can not wait!!!!!
I will definitely update after my 29th May appointment to let you know what's happening. You might hear from me before then! I am going to keep this blog running anyway, just updating after Hospital appointments. etc.

I'm off to bed...have to get up early and pack my stuff and pluck my eyebrows (which will take hours tackling these bushes!!) before getting the 12pm train!!

Hayley

Thursday, 17 April 2008

20 ~ The one where it was all over

Cancer is so limited.... It cannot cripple life, it cannot shatter hope, it cannot corrode faith

Firstly, I swear I don't wear the same bandana all the time. It just happens to be the one I wear everytime I write in my blog! Lol.

So, stick a fork in me, I'm done!!!!!

My final treatment was last Friday (11th) and I can't believe it's all over. On the last treatment the machine obviously was going to miss me because it broke down half way through so I had to lay there for a while waiting for them to fix it and in the end they sent me to the other machine to finish! I then went to see the Nurse to just get checked over and everything and then I was told to go back on Wednesday to see my oncologist and to see if I needed anything. etc.

So, I went back yesterday. I saw Dr Tahir and Tanya (one of the Nurses) and he asked me how I was. We spoke for a while about a few things and then he basically told me that he never wants to see me again unless it's out shopping or something! I will be going to see my consultant in 4-6 weeks at another Hospital...of course if I have any problems I can ring someone at the Hospital but for now, I don't have to go to a Hospital for at least a month. How weird!! I will have a CT scan in about 3 months time so then I will know if I'm in remission or not.

I got my mask yesterday, I forgot to ask for it on my last day so I emailed Lorna (one of the radiographers) and asked her to try and save it for me! They had it for me at reception and it's now in a bag on my floor. I don't know what to do with it really...I've heard a story where a bloke to his to the beach, put a firework inside it and blew it up!! Lol. I'd like to do that but then I'm not sure because I wouldn't be able to show anyone what it looked like (unless they looked at pictures)
My skin has got 100 times better in the past week, it's amazing how quickly it's changed. This time last week I could barely move my neck because it was so sore and now it's no longer red and it's only a tiny bit sore. It's a pinky colour in a few spots and then the rest of the skin is a brown colour. (Another crappy quality picture, sorry.)



My throat is definitely more sore now than what it has been. It's felt different from the start (mainly when I yawned or sneezed) but now it's painful everytime I swallow. It's not that bad though, still doesn't stop me from eating lol. (What does??) I've been coughing a lot too which has probably made my throat worse. It's making my chest hurt now because I'm doing it so much but it doesn't bother me that much. I've also been sick a few more times since I last wrote and I feel a bit more tired than normal but that might be because of the chemo too. Who knows!

My hair is still growing. It's taking its time though...I'm impatient and just wish that I could have my nice, long hair back but I think it'd take years to get it back to that length again! It's quite patchy still and it's really dark...and I think it's straight not curly! I hate sideburns though lol. It's the only part of hair that shows when I wear my bandana and it would just look better if they weren't there, haha. My eyebrows are really bushy now lol and I think that I can finally pluck them and they wont look weird. So, I'm going to that (when I can be bothered).

My voice comes out sometimes...I don't know when I'll start speech therapy. I'm guessing not for a while as the radiotherapy is still doing it's stuff. I do sometimes wonder what it's going to sound like, I hope that it's not too different. I did ask my speech therapist if I'd sound like a normal persons voice and her answer was. "what's normal?" Which is totally true. I should be used to having a 'weird' voice anyway because for about 2 years my voice was really husky and people were constantly asking me whether I had a sore throat or not. Now though, I can tell them the reason why it sounds like that instead of pretending that I did have a sore throat lol. My voice comes out randomly sometimes but it's not a proper voice, it's really quiet and if I try to talk properly nothing comes out really.

I'm not really sure if there's anything else to write about...oh. I asked when my PEG will be removed and Dr Tahir said to wait until I see Mr Pace-Balzan in 4-6 weeks just in case I do have trouble eating soon. I am glad that it's there just in case because what's the betting it'd get removed and then I'd need another one put in? Sods law and all that lol. There's no way I'd have another put in anyway, no thank you. I'd rather starve!! Haha.

Okey dokey, that's all I have to say really. I don't know when I'll update again...I'll try not to leave it too long.

Hayley

P.S To the lady who stopped me in Asda the other day to say she recognised me from my blog (that was a strange experience, I felt slightly famous!! lol) - my email address is hayleydyer3@aol.com if you'd like to email me. I should have given it to you when I saw you!

Sunday, 6 April 2008

19 ~ The one where there was only 1 week left to go

We must embrace pain and burn it as fuel for our journey. ~Kenji Miyazawa


I can't believe it! 1 more week of treatment left and I'm done. That's only 5 more trips to the Hospital!

When something happens I always think 'Oh, I'll have to write about that in my blog' but once I actually get here I can't remember any of it!

Things are still going ok, I'm feeling alright. I'm still eating everything the same (well...more of it) and swallowing doesn't hurt. I'm not getting my hopes up though because I know that the side effects can start from 2 weeks after treatment! It would be lovely to avoid them though (pleasepleasepleasepleaseplease) lol.



My skin is quite sore and on Friday it finally cracked. It feels especially stiff in the morning and it looks like I've slept funny on it because it hurts to move it too much!! I am still using plenty of aqueous cream on it and have been given some gel to apply to the cracked parts.
The stares I get when I go out are funny. I often wonder what people think because I know that before all of this it didn't register in my head that radiotherapy would mark the skin. I don't know what I'd think if I saw me walking down the street, lol.

Hair update: It's getting there, slowly. It feels like it's taking forever and ever to grow...I'm not even sure what colour it is. It's weird because some days it looks dark and then others it looks lighter. I took a (really bad quality) picture on my webcam and you can kind of see the length of it.

Voice update: Nothing really to report on. People often lose their voices when they're having radiotherapy to the larynx (and I've lost mine already!) so I'm not expecting it to come back yet. Sometimes a little bit of voice comes out and I try to get it to come out more but it doesn't really happen. I think it's going to take a lot of time and effort to get back but I'm up for it!

I had a couple of days where I felt ill this week, Thursday night (I think) I was sick once. I didn't feel sick before though, it just happened lol. But I did feel sick most of Friday and some of yesterday but I'm feeling much better now. I think that was just from chemo which I had on Wednesday.

My last chemo is this Wednesday...I'm trying to imagine how it's going to be not having any treatment and I can't. It's a really weird feeling. Don't get me wrong, I can't wait for it to all be over!! But, it's definitely going to be strange just waiting that little while to find out if the cancer's gone. I think I'll have an appointment about 4 weeks after I finish treatment to have the lovely camera up my nose and down my throat to see if there's anything down there and then about 3 months after I finish I'll have a CT scan (or MRI?). Then from then on I'll have an appointment once a month for a year, then every 2 months in the 2nd year. etc etc etc until I get to 5 years and I'll be cured! I'll be coming up to 24 then...that's really weird to think about.

I don't think there's anything else to update about to be honest. I'm unsure what to do about this blog once my treatment is over, because what will be the point in writing in it when I'm no longer kicking cancers arse? I would have kicked it already! I'll probably just update it after every monthly appointment to say 'Still cancer free!' or something.
I'll still leave it open for people to see though because people might like to look back on it if they're going through the same thing...or because they're just interested!

Thanks for the comments and emails, keep them coming.


One last thing, I've put on even more weight. Boooooooooo.

Hayley

Monday, 24 March 2008

18 ~ The one where Hayley was over half way there

Each day comes bearing its own gifts. Untie the ribbons. ~Ruth Ann Schabacker


Good news everybody. I found out last Wednesday that the tumour has shrunk even more. Wohoo!! I also had two swollen glands in my neck and they're gone. Dr Tahir said that he is really pleased with how everything is going, so am I!

I've been feeling alright, can you believe this is my 5th week of treatment? 15 treatments to go. When I was waiting for treatment to start I really thought that it was going to drag on, but it really isn't. Let's hope it continues to fly by (I'm sure it will)

Last night I ended up in the Hospital. Nothing major, I just felt generally crappy and not 'right'. And my whole body was aching and I had a headache...plus my stomach was really sore (around my PEG) so my Mum phoned the Hospital and the Doctor said to take me in to check my bloods and everything. I think we got there about 6pm and I had my temperature/blood pressure/heart rate and all that stuff done - it was all okay. The Doctor came to see me and took my blood and then a nurse took a swab of my PEG site. I think we waited until about 9pm and the Doc came back and said to go home and just take paracetamol as my bloods had come back fine. I don't know if my PEG is infected again because they didn't say anything but I'll ask tomorrow when I go for treatment. I still have a headache and my whole body is still aching, I don't know why...maybe I've got the flu coming or something??

My neck is starting to change colour now, I didn't notice it for a while but people kept commenting on it when they saw me. I took a picture to show you but you can't really see it as much as you could if I was standing in front of you...it's not sore to touch or anything. I've been putting plenty of aqueous cream on it twice a day as I don't want it to get bad...I don't know how bad it will get as everyone is different.
There's more redness on my shoulder but I've got an awkward top on today so next time I'll take a picture where you can see the whole area.

I don't think I have anything else to say, last Thursday marked 4 months since I was diagnosed. It seems like it was years ago though, so much has happened since then!

I have two treatments tomorrow, 9am and then 3pm. It's because I didn't have any today due to the Bank Holiday.

Anyway, thanks for reading.

Hayley

Monday, 17 March 2008

17 ~ The one where Hayley had a lot of thanks to give


Every tomorrow has two handles. We can take hold of it by the handle of anxiety, or by the handle of faith. ~Author Unknown



Firstly, I'll just do an update about me and then I'll talk about what I came here to talk about (the charity day).

Things are going okay, nearly half way through treatment now. Can't believe how fast it's flying by!! I'm feeling okay...I'm not talking about it too much because I'm convinced I'm going to jinx myself.

I've put on weight...lol. Look how fat my face is!! I'm just enjoying eating waaaay too much to care at the moment, haha. Also, I'm on steroids 3 out of 7 days a week and I have a lot of fluids pumped in to me when I have chemo...so let's all pretend that's the real reason why I'm putting on weight and not because I'm a pig.

PEG is infected again. Grr. It was infected before, I took antibiotics and within a day of stopping them it started to look infected again so I'm on more now. Fingers crossed it'll clear up this time!!
Hair wise...it's growing. Slowly but surely!! I didn't think that my eyebrows were affected by the chemo but they've gone quite weird (you have to look close to see what I mean) - it's as though they thinned out and are growing back and...maybe I'll take a picture and show you on my next post. But I haven't had to pluck them since December and I think I'm going to have to soon. I haven't really missed it lol
I would show you a picture of me without a bandana on but I think I look horrible withour hair so you'll have to wait lol. If you really want to see, get a picture of me and open it in microsoft paint or something and erase the hair...I didn't think it would look anything like me but I did it before I lost my hair and sure enough...that's exactly what I look like now!! Lol.

I have a CT scan tomorrow. Wish me luck!!

On Saturday it was the Charity Day...it all went REALLY well. I had a brilliant time, I'm knackered now though!! I didn't actually do much when it came to the planning...infact, I didn't do much of anything but sit there, watch (and eat lol) so all thanks has to go to my Mum, Pete, Terry...erm...everyone else lol....I think if I listed everyone's names here this post would end up 10000 pages long.
THANK YOU to every single person who donated money, gave us auction/raffle prizes and came to the day/night...even though I don't show it often I am really grateful.
I haven't individually named people to thank because I don't want to upset someone and leave them out but you all know who you are.
Without all of those people it wouldn't have been possible to raise so much money. On the night alone we raised about £3000 and we still have ticket money and sponsership money to come!! Amazing, isn't it?
There's more information on the website http://www.kickingyoungcancer.org.uk/ about the day if you're interested!

I have all of the pictures on my facebook account if you want to see them. Just click this link: http://www.facebook.com/photos.php?id=560424464
I think that I'm going to leave this here, this could possibly be the shortest blog I've ever posted! I don't know when I'll update again as I'm pretty rubbish at doing it regularly. I might do it once I get the CT scan results, I don't know when that will be. Possibly Wednesday? I don't know.

Thanks again for all your lovely comments and emails, I say it all the time but I really do love them. They make me smile! Keep leaving me more and I'll love you forever (or email hayleydyer3@googlemail.com)
Hayley

Friday, 7 March 2008

16 ~ The one where Hayley was nearly a third of the way there!!

"The positive thinker sees the invisible, feels the intangible, and achieves the impossible."


There's the t-shirt I was speaking about months ago! I recieved it in the post in December and keep forgetting to actually wear it and take a picture to show you all. So there you go!

Things are going well, 10 treatments down. 25 to go. The past 10 treatments have flown by, everytime I go for treatment it seems to quicker than the day before. Also, I feel more calm as the days go by too.

I'm feeling alright, a bit tired but I've had a busy week. My friends from Manchester came down and stayed from Monday until Thursday. I really miss them and can't wait to be better so I can go up and see them.

My throat feels okay still, I'm still convinced I'm going to jinx myself so I wont chat on about it too much. It feels different, only when I sneeze or yawn though. It doesn't hurt...just feels odd. It's really hard to explain. No noticeable marks on my skin either yet. I've been using cream on my neck twice a day so hopefully it wont get too sore.
I had chemotherapy on Wednesday, it went fine. I felt a little bit sick but it still didn't stop me eating my ice cream, haha. It really knackered me out and on Wednesday night I was a right grump. Thanks Leah and Jess (and Mum) for putting up with me!
My PEG turned out to be infected so I've been on antiobiotics. I stop them tomorrow and it seems to be clearing up well. It doesn't really hurt anymore and half the time I forget it's even there. You can't really see it through my clothes, but that doesn't bother me anyway.

I think I have a CT scan soon. Possibly the 17th. I have the date on a piece of paper in my bag but I'm too lazy to get up and get it lol. It's just to check the progress I guess and also if it's shrunk (pleasepleasepleasepleaseplease) then they might need to make changes to the mask and the positioning of the lasers or whatever.

In December a few of my friends arranged for me, my Mum and youngest Brother, Ryan to have a photoshoot. I had it on the day of getting my PICC line (can't remember the exact date) and the other day I got the pictures through. I really love them and it's hard to believe I once had so much hair. Cheryl (the photographer) did an amazing job, if you'd like to take a look at her work, please go to http://www.feelgoodphotos.com/ - I'll just post two or three pictures on this blog. If you'd like to see them all you can go to my facebook (search for Hayley Dyer) and they're all on there.

Click the pictures to enlarge them.


Lastly, this week I heard some news that a family friend, Jason, has been diagnosed with cancer of the oesophagus (not sure if I spelt that right?) - I was really shocked to hear the news. Even though I have cancer I still never thought someone I knew would ever get it. Jason is brilliant and he's going to kick cancers arse just like me!! He has also set up a blog and I'd like it if you could all go over there and say hi to him, his blog is http://www.beatcancer-jay.blogspot.com/ - thank you.
Also, Jason's friends Dad, Bill Dennis, has got lung cancer and he is responding well to treatment. So, let's all send him some more positive tumour shrinking vibes!!

I'll leave this post here, leave me lots of comments. I really, really, really, really, really do love reading them. If you don't feel comfortable leaving them on here (because other people can read them. etc) then you can always email me at hayleydyer3@googlemail.co.uk - Val, I asked you on my last blog to email me but stupidly left the wrong email address lol. So, if you are reading this then please email at the above address. It's the right one this time!!

Anyway, night night.


Hayley

Wednesday, 27 February 2008

15 ~ The one where Hayley had (what felt like) a long day


I don't think of all the misery but of the beauty that still remains. ~Anne Frank


I come with good news!!

Today I met with my oncologist and we just spoke about how I was feeling and then he said he'd looked at my last CT scan (which I think was the week before last) and he said the tumour has shrunk again. Wohoo!!!!! He said that the two lympth glands in my neck were coming along really well too, I say that because I can't actually remember what he said but I know it was good lol. He seemed impressed, so I am too. I don't get too excited though, one day at a time and all that.

Radiotherapy is going well, I don't really want to go on about it too much because with my luck, I know I'll jinx myself. It's just the way things seem go in my life, when I first started chemotherapy the first few days I felt great (probably due to the steroids) and I was bragging like "Oh, I feel great. I'm not going to get side effects blah blah" and then BAM they hit me like a ton of bricks, haha.
It's going okay though, the mask doesn't really bother me that much anymore. It goes SO fast - I think maybe I wear it 10 minutes each day but the actual treatment is about 20 seconds to the left side of my neck, 20 seconds to the middle of it and then 20 seconds to the right side. So it's not that bad. Only part I hate is the travelling and the waiting, but it's no one's fault. I just get bored.
When I went in to the room today a radiographer introuduced herself and said "Hello, I'm (name), I feel like I know you already because I read your blog" Lol. It made me laugh. I don't think I realise how many people actually read it, but usually every day I get at least one person mention it.

I also had chemotherapy today, it took about an hour. I feel alright, they said that I wont get that many side effects with this drug. It's called carboplatin - the three drugs I was having before were called taxotere, cisplatin and 5FU. This drug is like cisplatin but has less side effects, which is good because it means my hair is going to start coming back. It's already growing, still just stubbly stuff but at least I have some, haha. I do still get shocked at night when I take my bandana off and look in the mirror I'm like "Oh yeah, I'm bald!" I can't wait to have hair.

My PEG is still really sore, much better than it was though. Last night when I tried to flush it I was really trying hard to push the water in but it just would not budge so the water ended up exploding all over the bathroom, it made me laugh. When I woke up this morning there was some yucky stuff around it so when I went for chemo today I told the nurses and they had a look. The head and neck specialist came down because she deals with PEGs and she loosened it for me...it feels so much better now. I feel like I can (nearly) stand up straight!! It's not infected or anything, it's apparently quite common to get stuff around it. It's just stuff from my stomach...gross or what lol. Oh, one of the nurses managed to flush it today too so it's all good.

More radiotherapy tomorrow...and the day after, the day after that. etc etc etc Basically for the next 6 weeks and 2 days, haha. I can not wait for it to be over, but I have no problem with doing it or anything. As long as it helps I know it'll be worth it.

Ooh, I saw the dietician today. She asked me how my swallowing is (it's fine) and said that just to carry on eating what I want (trust me I will lol) and then if I get any problems then to give her a ring and we'll arrange the food supplements or what ever. Hopefully it wont come to that though. Fingers crossed.

I'll leave this here...thanks for all your lovely comments. Keep leaving them for me because I really do enjoy reading them.

Hayley

P.S This is for Val. You left me a comment on my PICC Line entry and I'd really like to stay in touch with you but don't have your email or anything so please could you leave your email address or email me at hayleydyer@gmail.com - thank you!

Sunday, 24 February 2008

14 ~ The one where Hayley got the PEG

We must embrace pain and burn it as fuel for our journey. ~Kenji Miyazawa


I'm trying to remember what's happened since I last updated. Not much...that I can remember anyway!

I found two more lumps (one in each armpit) last week, I went to get them checked on Monday and they'd gone, just like last time. Haha. Typical. I also found another lump in my belly on Friday morning and when I went to the Hospital to get my PEG I mentioned it to the Nurse and she said it was probably from my clexane injections. And today I can't feel it anyway, I hope I don't get anymore because I always panic when I find them, lol.

On Friday I got my PEG fitted. I'm not going to lie...it wasn't the nicest experience ever and I wouldn't like to do it again but I'm alright now. It is really painful and it hurts to move too much but it's gradually getting better and better. Last night it was really bad but once I got in bed it was alright. It's strange having something come out of my stomach but I'm getting used to it now. I've taken a picture...you can't see too much of my belly (trust me, that's a good thing!)

I'm trying to think what else has been going on, oh - me and Pete went to BBC Essex radio station last Friday and we had a really nice time. Obviously, I didn't speak but Pete did really well and answered all the questions right! Apparently Pete had another phonecall from someone else there to do another interview. Don't know much else about it though!

I was also interviewed by another newspaper, Braintree and Witham Times. That came out on Wednesday, I was pleased with that as well as all the others. I do sometimes get worried that it'll get turned in to a depressing story and they'll get things wrong but so far, so good!

Everything to do with the charity day is going really well...I'm hoping that I'm feeling okay to go on the day because it's on the 15th March which is nearly 3 weeks after I start radiotherapy and apparently the side effects start from 2 weeks onwards. Hopefully by that time I wont be that bad (And hopefully I wont EVER be that bad lol)

I had my final mask fitting on Friday, went fine. I had a hot flush while the mask was on lol. It was so frustrating cos I really wanted to fan my face but I couldn't! I start radiotherapy tomorrow, I'm not nervous about it or anything because I know it will be alright. My appointment is at 3:10pm. I thought I had chemotherapy tomorrow too but it's on Wednesday.

Lastly, I'm just wondering if all my readers could do me a favour. I get quite a few hits on my blog each day but don't get very many comments. I'm just interested to know who does actually read my blog and where they live - so if you read this please could you leave a comment saying where you live or just say "Hi" or something. If you don't know how to comment me then you can always email me at hayleydyer3@googlemail.com - Thank you!

Hayley

Thursday, 14 February 2008

13 ~ The one where Hayley got inked

Wherever you go, no matter what the weather, always bring your own sunshine. ~Anthony J. D'Angelo


Hi everyone,

I just thought I would update.

On Tuesday I had two appointments, one at Essex County in Colchester to fit my mask and go on the simulator and then an appointment at Colchester General for a CT scan. Both appointments went fine, the first one just involved having the mask put on and then making adjustments (I don't think they needed to do much) and then I had to wait a while before going in to the simulator room to mark the mask (so they know where to aim the radiotherapy stuff at) - I had to lay still with the mask on for about 10/15 minutes. I wasn't really looking forward to it but it wasn't as bad I expected, it just feels a little bit tight but it's meant to be so I don't move!! I think it helped that I could actually open my eyes this time, even though the mask doesn't have holes where my eyes are I can still open them - it just looks like I'm looking through frosted glass, haha.
After that was done the radiographer came in to the room and asked if I minded if she tattooed me lol. It's just a tiny tiny dot on my chest, so they know where the mask is meant to be lined up. It's permanant by the way, but I'm really not bothered because it really is so small people would just think it's a freckle or something lol. If, of course, have a picture of it!! It's (obviously) in the middle of the two arrows lol.

After that appointment we headed to the general hospital, didn't have to wait too long. I got taken in to the room and layed on the bed, had the mask put on and then had the CT scan. Think it went on for about 10 minutes...I just try and concentrate on my breathing when I'm laying there. Because it's so tight around my throat it makes me feel like I can't swallow (which always makes me think about it and then panic) - but, I actually can swallow lol. That was over and done with and then we headed home!


On Wednesday I shaved my head. Well, I didn't do it. My friends Vix and Jodie did. I knew that I had to do it at some point and had been thinking about it for a few days and just decided that I needed to get it over and done with. Firstly, we cut my ponytail off and left it on the light shade in the living room so my Mum saw it when she walked in LOL I'm weird, I know. Then we went in to the kitchen and did it. My roots are blonde - so I wonder if it'll all grow back blonde. Wouldn't that be strange? Even though I was amost bald anyway it's still weird when I look at myself in the mirror - it's going to take some getting used to!! I'm excited to see how it grows back, I really can not wait. Let's hope it grows quickly!!

Today my speech therapist, Hilary came over. She was here for about an hour and a half, I think that was mainly because I don't shut up lol. We're not going to properly work on my voice just yet because people usually lose their voices when they have radiotherapy but I have exercises to do every day (little and often) - the tumour is stopping my voice from coming out properly, it's hard to explain it. Hilary will also be the person to talk to if I can't swallow properly and everything and she said that even if it really hurts to swallow, to still try and do it as often as possile otherwise my neck can stiffen and then when I'm better from the radiotherapy I wont remember how to swallow properly. Even if it means just taking tiny sips of water a few times day, it's better than doing nothing at all. BUT, I might be fine. Erm...I'm trying to think of everything else we discussed. I'm so rubbish - I always forget what is said!!
Hilary brought loads of things with her and in the end I asked what they were and basically, one was a swallow test kit. But she said she saw me drink my tea and can see it's fine lol. And then another one was an amplifier! But, I said that I didn't really need it because (most) people can hear me clearly even if I am whispering. It's just on the phone that some people can't hear me but most people can now. I think I've learnt to whisper pretty loudly seeing as I've been doing it since October!!
I mentioned about my voice coming back around Christmas and I said that ideally, I should of just used it all the time even if it didn't come out that great it would of kept my vocal chords going and everything. But, she said not to beat myself up about it.

A little bit of voice came out today and Hilary said she was impressed, which is good!! It's pretty hard to write down on paper what exercies I have to do...one of them I have to try and say "eh oh" like a tellytubby haha. I have a few others...she said to just pick randomly which ones to do. And if I get any pain at all, to stop straight away. I mentioned it was my Birthday in 5 months today (yay!!) and she said that hopefully I'll have my voice by then!!
I asked her if my voice will ever be 'normal' again, she answered "What's normal?" Lol. Which is totally true...but I went on to say something like "If I was in a room and we all had to speak, would someone notice that my voice was different from the others?" She said that she couldn't answer that question but my vocal chords will probably have some scarring from the tumour so it might sound a bit hoarse. But she has seen people whose voices have returned to normal. So, it's not really a question that can be answered. But, I'm prepared for it to be different...I'm used to having a different voice anyway. At least now I can come back with the reason WHY where as before I thought that was just the way my voice was.
It's weird that before my voice was the only thing I ever worried about and now, it's not really something that bothers me too much. If it's different then I'm sure I'll (and other people) will get over it and I'll just be grateful to have any voice.

I don't think I have anything else to update on, start radiotherapy in 11 days - I'm not nervous about it or anything. Kind of exciting to get it started because it means it'll be over sooner if that makes sense lol. I'm going to be crossing the days off after each treatment and I'm sure it'll fly by. I was diagnosed 3 months ago on Wednesday and that has flown by. Feels like it was last week or something.

Oh, one more thing. My hearing has been weird lately - one of the side effects of one of the chemo drugs (cisplatin) is (sometimes permanant) hearing loss and I've been getting ringing in my ears for a few weeks but didn't really link it to side effects of the chemo. I also noticed that when I have ear phones in, the right ear phone sounds louder than the left. So, I need to mention it to one of the chemo nurses. I'm not sure when though because I don't have my next lot of chemotherapy until the 25th...but I could get my Mum to phone Lisa and see what she thinks.

For everybody who lives in Essex, listen to BBC Essex tomorrow morning (frequency is 95.3 FM) at 9:15am. My Uncle Pete and I are going there tomorrow to be interviewed about the charity stuff we're doing. Well, Pete's doing the talking. I'll just sit there and listen!! Mum was meant to go but she's not well at the moment (get well soon Mum, love you!) so she can't come. Sometime soon I'll post an entry all about the charity event and everything.

Okay, that really is everything I had to say. I'll post this now before I think of something else and bore you all!!

Hayley

P.S Happy Valentines Day!!