Tuesday, 27 November 2007

2 ~ The one where Hayley asked questions

Cancer is a word, not a sentence. ~John Diamond


Hi guys,


So today was my appointment at the Hospital to ask questions and stuff! My Mum and Uncle Pete came with me and I'm glad they did because for some reason I always zone out when I'm being told something, lol. I just sit there and hear what they're saying but it just goes in one ear and out the other! It used to happen when I was at School and I was being told something important...I'd walk out of the room and think "What the hell did they just tell me?"



Luckily, I had my Mum and Pete there to listen to everything he said and Pete even wrote some stuff down which I'm very grateful for. Basically, now all we have to do is wait to hear from Charring Cross Hospital in London - I don't even know if they're prepared to do the laser surgery yet but I hope they do do it. I was told to ring St Johns on Thursday or Friday if I hadn't heard from them yet.


I had a few questions to ask, what the next step was (which is explained above), I also asked how long I will be in Hospital for when I do have the growth removed. He said about 48 hours depending on how my swallowing is and how sore my throat is. It'll be scary staying in Hospital as I've never been in overnight before (apart from when I was born...), but I'm sure that I will be fine.



I also asked whether chemotherapy or radiotherapy will put my fertility at risk. He said that with radiotherapy it wont and he doesn't know about chemotherapy so I'll have to ask the oncologist.


My Mum and Pete mentioned that my breathing is getting bad and he said that he was going to look down my throat with the evil camera. I declined haha. It has got a lot better than what it was


but I do wish that I let him take a look just in case it's very close to closing off my airway completely, hahaha. The consultant/surgeon said that if it does get worse then to ring the Hospital and they will bring me in and take a look at my throat and remove part of the growth if needs be.

I was told that my voice will never be how it used to be, which I expected anyway. I'm not really upset about it because I am grateful to have any voice. I'm grateful to even be whispering right now. It will be a bit annoying when people always ask what's wrong with my voice but I'm kind of used to it and there are much worse things to worry about! My speech therapist apparently told Adele (my cancer nurse) that if I want to see her and talk about my voice then to give her a ring. I'm glad that she said that because it's nice to know I can talk to someone who knows what's going on and has seen people with problems before. If that makes sense...Adele seems really lovely too and said if I need anything to give her a call. These people are so nice and supportive! There's also a lovely nurse called Linda who I have seen two of three times at the Hospital. I gave her the address for this blog so if you're reading this Linda, hi!!

I have been getting frustrated that my Mum is the first to know things (which is no one's fault...it's just that I can't be heard on the phone!) and Adele suggested that everytime someone phones that we put it on speakerphone and I can tell my Mum what to say back to them which is a very good idea! I'm really glad because I was just getting annoyed that I wasn't the first to know about what was happening to ME!



The plan really is to have the tumour removed by laser IF the Hospital does agree to do it. Possibly having radiotherapy afterwards. If the Hospital doesn't do it then I will have radiotherapy at St Johns which the surgeon/consultant said is VERY successful. He sounded SO positive about it which made me feel tonnes better and also my Mum! They don't really want to do too strong a dose of radiotherapy because of the long term effects. So if they do it after the laser they will do it in small doses instead of one big dose. Chemotherapy is still a possibility but not very likely...he doesn't seem to think I will need it but is leaving the option open until we definitely know.

They are not looking at removing my voice box, that will be the very last thing they have to do but they don't seem to think they will.



The cancer is on the left side and when they looked at my MRI scan it showed that the cancer is NOT attatched to any skeletal part which is a GREAT thing. I was soooo happy to hear that.

The consultant/surgeon was SO nice. I really liked him...he was positive the whole time and just made me feel so relaxed and at ease. He kept saying "When you're cured" and that the success rate is good and there's no reason why I can't have a good quality of life afterwards.


Hearing that just made me feel great, I was feeling pretty positive anyway but that made me feel even more positive! It also made my Mum feel better.



Do you like the pictures of me and my Mum? Haha. We just took them on the webcam. We're such geeks but I love it. Here's an explaination of them...the first picture is of us looking scary lol. The second picture is me hiding my chin! The third is me giving my Mum 'the face' when I don't like what she's telling me and the last picture is of me and Mum with a pillow covering our chins!




Anyway, I am going to be in the audience of The Graham Norton Show tomorrow night (it's shown on Thursday, BBC2, 10pm) - I went about a month ago and I loved it so I'm very excited to go again. Alan Carr is one of the guests and I really love him.


Night night.



Love,



Hayley

Monday, 26 November 2007

1 ~ The one where it starts


Attitude is a little thing that makes a big difference. ~Winston Churchill


Hi there,

My name is Hayley and I live in Essex, England. I am 18 years old and live with my Mum and Step Dad. I have three Brothers, a sister in law and identical twin Nephews. I also have two cats and a very cute dog!

On Tuesday 20th November 2007 I was diagnosed with cancer of the layrnx. I noticed a few years ago that my voice started to go a bit husky but I didn't think anything of it until it really started to go hoarse and people started asking me all the time if I had a sore throat or not. I couldn't sing or shout and it was really getting me down. After a lot of procrastinating I finally went to the Doctors about it and he said to go back in a few weeks if my voice had not changed. Which is hadn't...so he referred me on to the ENT at the local Hospital.

When I had my appointment I had a camera shoved in to my nose and down my throat, I really panicked about it but it was no where near as horrible as I expected lol. The Doctor then noticed I had a polyp on my left vocal chord (boy was I relieved...) and scheduled for me to have it removed within the next couple of weeks.

I got my operation date through (17th October 2007) and I had the surgery to have it removed. I had different people tell me different things about voice rest so I decided to take the first Doctors opinion and didn't use my voice for two weeks. After the two weeks it didn't come back but I kept trying and trying...I had one appointment with a speech therapist and she told me that it would take a while for it to come back and that I had to do vocal exercies every day. I was scheduled for another appointment the next week but the woman phoned and cancelled it the day before.

The 7th of November 2007 was my check up with my consultant after my operation. My Mum and I walked in to the room and she didn't look very happy...I thought maybe she had a bad day or something lol. She basically said that when she removed the polyp she noticed what she thought were warts underneath the polyp...just going in to my voice box. She said that I wasn't meant to be discharged from the Hospital until she had explained what was going on but the Nurse let me go anyway. Grr. Basically...she said that she sent the 'warts' off to be looked at and they wern't warts. She said that she didn't think it could be cancer because throat cancer is SO rare in someone my age. She ended up sending it off to London to see looked at by a Professor and scheduled an appointment for the 20th of November 2007. Meanwhile I was booked in for a CT scan, had that done and got a phone call saying they had booked me in for an MRI scan. I had no idea that they knew I had cancer at this point, but they did.

Roll on 20th of November, me and my Mum go to the Hospital and I just have this feeling that it is cancer. Walk in to the room, my consultant says to me "Have you been getting out of breath lately?" and that's when I knew for sure I had cancer. She said "Well, we got the results back. It's what we thought, you have got cancer." I was just like "Oh ok....that's a bit crap isn't it!?" - she then said that it's never been seen in someone so young for me and that they're trying to figure out the best treatment for me that enables me to have a good, long quality of life. The Hospital are being fantastic, specialists/surgeons from over the country had a meeting on Friday 23rd November to take a look at my MRI scan and discuss what they believe is best for me.
They decided to refer me on to a Hospital in London (Charring Cross) and I will be having laser surgery within the next couple of weeks to remove the tumour and then they will decide what will happen next.

I have an appointment at my local Hospital tomorrow afternoon at 2:25pm to ask them any questions I have and talk about what's going on. The thing is...I have absoloutly no idea what to ask! Maybe I'll have to look around online at what people asked their Doctors when they had just been diagnosed with cancer.

Yes, I am very very scared that I have cancer. Yes, I have horrible thoughts going through my head but NO I am NOT going to let cancer beat me. I'm 18, I have a good life ahead of me and I intend to live it to the full until I'm in to my 100's. Ok...maybe 70's/80's lol.

I will update tomorrow after my appointment at the Hospital.

Love,

Hayley