Thursday, 11 April 2013

31 ~ Five years.



"Cancer didn't bring me to my knees, it brought me to my feet." 
~ Michael Douglas




Wow, it's certainly been a while, hasn't it?


I will begin with saying this:

I MADE IT!

I made it to five whole years in remission, which in medical terms means I am cured.

I know this doesn't mean my cancer will definitely never return, but it means that I have a lot less chance of it returning now after having five years of all clear check ups.

Five years ago seems like forever ago, I feel like what happened to me, happened to a different person.

I can still remember a lot of it but thankfully the bad memories get replaced by new memories. Your life  (and your families) is consumed by cancer when you are going through treatment, every memory I guess has something related to having cancer. For example, I went shopping with a friend of mine. I can only remember that day now because when I handed my clothes to the assistant, my hair got caught in the hanger and a bunch of my hair went with it. (It was funny though!)

When I look back and think about that time, I always try and use my sense of humour. I don't really see any other way about it, if I think of it sadly then all it does is make me feel sad.  Life happens, it's short so we have to be grateful for what we have and what we had.

I remember the time I was in hospital over Christmas and I went to the toilet. This was 12 days after my first cycle of chemo. I was told by the nurses that my hair would probably start to fall out around day 12. Well lo and behold, I pulled my underwear down and let's just say there was nothing left. I called for (whispered, rather!) my Mum because for some reason when you think of hair loss, you don't always think of hair loss. It was hilarious.

I'm glad we have memories of that time that aren't morbid and depressing. Yes, there were times where I felt so ill I wanted to sleep until I was better, yes I was annoyed that mine and my families lives were disrupted by going to the hospital pretty much every.single.day for so long - but it was what was needed to make me better. I always knew that I would get better, I don't know why. Maybe it was just my instinct, but only now can I realise how horrible it must have been for my family. Especially my poor Mum who certainly got the brunt of my 'roid rage' and my general nastiness. She didn't know that I was going to get better, the Doctors didn't know I was going to get better. Only I did.

So, what has changed since I last wrote in this blog over three years ago?

Firstly, my hair is long. There was one time I had a haircut and the hairdresser got waaaay too scissor happy. She cut it really short (for me anyway!) and I was gutted because it took so long for my hair to get back to how it was before I lost it. But it's grown back and I'd say now, it is just as long as it was before.

After my last blog post (in 2010) I had a barium swallow test and the Doctor told me that he thought there was an "abnormality" in my oesophagus. Cue me shitting myself (excuse my language) - I was put under general anaesthetic by my consultant and as I woke up he was standing at the end of my bed and just said "there's nothing there Hayley" OH THE RELIEF! I had to keep asking him if he was sure, apparently I cursed the Doctor who pretty much said the cancer was back. Oops.

My check ups are becoming less frequent (thank goodness, no one loves a camera shoved up their nose and down their throat) - my last one was in February or March and I saw the original consultant who told me I just had a polyp on my vocal cord. It was the first time I hadn't seen Mr Pace so I wasn't too keen on this consultant checking me, but he was happy. I see Mr Pace again in August and then I am hoping he will change me to YEARLY appointments. People don't tend to be asked to go back after they reach their five years, but I am only 23 now and being so young it's probably for the best that I'm checked once a year.

I have a full time job. No matter how much I don't always love it, I am very grateful to have it. It has helped me 100% with my confidence. My voice was a big issue in my life, I hated to talk to strangers because I hated them asking questions/making comments. etc. But now with the job I'm in, I don't have a choice but to talk to people all day. I get questions still, mostly "have you got a sore throat?" or "what's wrong with your voice?" but I have learnt to deal with it. I just brush it under the carpet and move on. There are a few times when people have peed me off. For instance, one man came up to me and looked at me and shouted "Ugh, what's wrong with your throat?" so (me being in a bad mood that day) I just blurted out "I had throat cancer" and he literally jumped back and said "Ugh, you can't catch it can you?" Let's just say I wanted to go and lick him alllll over his face to make sure he walked away very scared. Most of the time I just tell people that it's a long story because I don't want to embarrass them, but sometimes people go on about it for weeks so I end up just telling them.

My voice has improved so much, I think having my job has helped. I get days (especially when tired or in the summer) where it is really rubbish, but they are so much less than they used to be. I drink a lot of water because this helps with how dry my mouth gets, I can sort of shout. I am just used to my voice now so I don't really listen out to how it's changed but people say that they can hear me a lot more than they used to. If I'm in the pub/somewhere with loud music it is pretty much impossible to hear me but it's such a small price to pay!

I get neck cramp where my neck has been weakened by the radiotherapy. My teeth are slowly but surly giving up on me and I still have dodgy marks on my neck from the burns. Tiredness wise, I still get tired but maybe I'm just lazy! I don't have great circulation in my fingers and toes thanks to the chemotherapy but I don't care. I am here, these side effects are just a reminder that I just had to have some crap given to me to get me here today.






Then & Now












I can't really say specifically what else has changed since the 'cancer days'. Honestly, everything has changed. I am a different person. It changed me dramatically but I think it's changed me for the better. Of course I wish I never had cancer and had to put my family and friends through it, but that's life. We can't control everything (which is hard for a control freak) so we just accept it and KICK ARSE.

I will always live with cancer, I will always have certain things that remind me of those times, but I don't think it's a negative thing. I guess I sort of feel proud that I have beaten cancer and I have come this far. When I talk about it with people it's never something I'm ashamed of, or not willing to talk about. Awareness is a huge factor that I think there still isn't enough of. Especially in the situation I was in, 18 years old and diagnosed with advanced throat cancer which had spread to my neck. I think one day, maybe next year, maybe in twenty years, who knows, I will use my experience with cancer as a way to raise awareness and help people. I hope to God that by the time I have children, or my children have children, cancer will be something that is rarely heard of anymore.

If I hadn't have had cancer, I wouldn't have met so many wonderful people. A lot of those who sadly aren't with us anymore, but some that are still with us. Without them I wouldn't have had people who I could relate to and vice versa. It's so important to know that you are not alone and I am so thankful to every single one of those people.

Mel, Jools (my second Mum), Penny, Emily, Stephanie, Anne, Aunty Gok (Diane), Kate (my adopted Nan) and Maria. I miss you all so much.

Steffy, Debs, Nigel, Val, Chloe, Ian and Julie, Kt, Kelley, Carole, Mayte and Rosie. Thank you for everything.

Also, I want to say thank you to the wonderful doctors and nurses who looked after me, thank you to my oncologist Dr Tahir and consultant Mr Pace Balzan for working together and coming up with the best treatment plan which aimed to reach a cure for me. I guess your work is finally done.

And lastly, thank you to my family. Especially my Mum and Uncle Pete, without you two I'd be nothing! And of course my friends, you know who you are. I love you all soooo much.

I won't say goodbye forever. But hopefully this is the last time I ever have to write in here! You never know, I may treat you all to a '10 year' cancer free anniversary blog post if you're lucky.

One more thing, thank you to my readers, those who commented and those who didn't. I wouldn't have kept writing if you weren't all there. So thank you.

Love,

Sunday, 21 February 2010

40 ~ The one where Hayley updated

Call it a clan, call it a network, call it a tribe, call it a family. Whatever you call it, whoever you are, you need one.
~ Jane Howard


Hi all.

Merry Christmas, Happy New Year and all that! It's been a while but I thought I'd update to let you know of recent Hospital appointments. And to announce that I have been in remission for 18 months today. Woah!

Anyway...I had my last check up in January (the 12th), it went fine and my next appointment is on March the...18th I think. My consultant always says how he's pleased with how everything looks. I don't know when my appointments will become further apart, hopefully soon though!

I mentioned in my last blog how I was going to my GP so I could be referred to the Hospital for investigations in to why I get (really horrible) acid reflux. I thought it was related to the radiotherapy because that's when it started, but apparently it's not....so, my original appointment was just before Christmas, but I had a horrible cold/flu thing so I had to rearrange. THEN I completely forgot about the appointment and didn't realise until AFTER I was supposed to go, so I had to go back to my GP and get referred again lol.

My appointment was on Wednesday (17th), at a Hospital I've never been to before. It was really nice there. The Doctor was nice too.

We had the whole "Wow, only 18 when you were diagnosed! I've never heard of that before!" (pretty much everyone I tell says the same thing lol), he asked if I smoke (no), if I drink alcohol (no) and then he laughed and jokingly said "I suppose you're going to tell me you're a vegetarian now" and so I said "Well, I actually am" and his face was funny. He was like "Oh...that will teach me to open my mouth!" Haha.

He asked me to explain to him how long I've had reflux and all that. He asked a lot of questions (which is a good thing) and then he examined my mouth, eyes (?), neck, chest, stomach. etc etc...he was really thorough which is a good thing. It felt like we were in there for ages! lol.
I forgot to mention having had a PEG and when he lifted up my top, he put his finger right on it and was like "Oh! There's your PEG scar!" lol. I forgot to tell him that it still hurts sometimes. I also forgot (I forget a lot...lol) to tell him how I feel sick a lot (if I don't take the reflux medication) but I guess I'll just tell him next time.

After examining me he took me back to the desk (where my Mum was), apparently he wrote on his paper that I'm healthy. Wohoo! That's after weighing me too...lol. I thought maybe the reflux could be weight related but he said he doesn't think so. I was hoping he'd tell me to get my act together and lose some weight, but he didn't. He also said "I thought people who had throat cancer lose weight when they have treatment" and I just told him that I thought so too. I also told him that the reason I put on so much weight was because I ate A LOT because I was told that I would lose my ability to swallow, so I was like 'well, I better stock up then and make the most of it!" haha.

He went on to explain that he think I could have an infection in my stomach. He said that he doesn't think a gastroscopy will be helpful (WOHOO!!!!!!!!!!) so he has referred me for a barium meal. I go for that on the 11th March. That bad news is that I won't be able to take my reflux tablets for 2 weeks. Boooooooooo. It's gonna be a painful couple of weeks! But, hopefully we'll get to the bottom of this so it won't be a problem any longer.

Lastly, my Nan is doing really well still. She had her first check up after finding out she's in remission and everything is fine. Wohoo!!

Right, I'm off. I will keep you updated with how the test goes.

Oh, and apologies for no photo...my hair is wet after my shower so I'm not looking that good right now! lol.

Love,

Friday, 20 November 2009

39 ~ The one where it was two years ago

"We don’t always get to choose which obstacles we face in life, but from the moment we were given free will it has always been our choice in how we deal with them."


Well well well, today is 2 years since I was diagnosed. How on earth did that happen? It feels like it was forever ago really, I can't remember what was said to me or anything when I was told I had cancer but I know a lot of things changed in an instant!

2 years!! I honestly can't believe it's been that long. Every anniversary is a milestone for me so I am very happy that I have made it this many years since diagnosis. My consultant told me that the chances of the cancer coming back gets less and less as the years go by.
So here's to 2 years down...and the REST of them to go! lol.

I had my 8 weekly check up last week. It went ok, I had a dream (or rather a nightmare) a couple of nights before my appointment so I was quite nervous this time. Which is unusual for me.
I have had a bit of trouble with my swallowing lately, when I was having radiotherapy I was lucky because I could still eat the whole way through (hence putting 500 stone on!), it did seem a bit harder to swallow food, but only with things like bread. I can still swallow, but sometimes it feels like food is getting stuck and I have to swallow a few more times to get it down.
I've also been getting ear pain too, which I got before I was diagnosed so I mentioned that as well as the swallowing thing.

Had a look at my vocal cords and thank goodness they were looking ok.

I have had really bad acid reflux since having radiotherapy and lately it's got a lot worse. To the point where I can't lay flat and if I drink too fast I get hiccups, or it comes straight back up (gross, I know) - It's not very nice. If I drink I can feel it going all the way down and if it's cold, it feels freezing, if it's hot, it feels REALLY hot and it burns.
I thought that it was related to the treatment but Mr Pace said it isn't. Soo, I have to go for a gastroscopy to see what's going on there. I am pretty much dreading it! I just really hope that the sedation works this time because last time (when I had my PEG put in my stomach) it didn't and it was quite a traumatic experience for me. Not to scare everyone because I'm pretty sure that MOST of the time it does work, just not for me...lol.

Mr Pace mentioned that he was thinking of sending me for a barium swallow test but he said that they might be able to see what's going on when they do the gastroscopy. So I guess we'll see how that goes! I'm thinking it'll probably be after Christmas.

Oh, I got some sad news. Well it's not really sad, but just for me lol. Dr Tahir (my oncologist) is no longer working with the ENT cancers so I wont see him again. Which is good if you really think about it, haha.
But, I will miss him, I actually haven't seen him for ages but was hoping that one day I'd see him at one of my appointments. Booooooo.

I had my 'first' haircut a couple of weeks ago (or maybe a month, I can't remember!) - I got fed up of it having no style so had it chopped. Well, not really chopped because I didn't want it too short lol.
I'm pretty happy with the length now and I don't think I'll let it grow to how long it was before it fell out. It's still darker than what it was pre chemo and if I don't straighten it, it's curly where as before it was dead straight.

Anyway, so much for not writing in my blog anymore eh?! I guess I will do every now and then!

On to my Nan - she had a hysterectomy two weeks ago and yesterday went back to see her surgeon. They got ALL of the cancer and she doesn't need any further treatment. Thank God. I am so relieved for her, she is really happy too.

Hayley & Nan - 2 : Cancer - 0!!

Okey doke, I'm off now. Apologies for the long blog post (as usual.)

Thanks everyone for your support and lovely comments. Stay in touch!

Love,

Monday, 12 October 2009

38 ~ The one where Hayley updated

In time of test, family is best. ~Burmese Proverb


Last week my Nan was diagnosed with cancer (of the womb).

We knew that it was a possibility, but I was quite shocked when it was definite and I still don't think it's really sunk in!
She has to have an MRI scan on Sunday and a hysterectomy sometime within the next couple of weeks. Hopefully, that's all the treatment that will be required - they wont know the staging/grading until her scan and op, but they think they may have caught it early and I really hope that that's the case.

It's all a bit weird, when my Nan had an operation a couple of weeks ago - it was in the same Hospital, same ward...and same bed. Maybe that bed is jinxed? Maybe it's a good job that Hospital is being knocked down soon!!
Also, I was reading through my Nan's information the other day, turned the page and it said 'Oncologist: Dr Tahir'. Now we have the same oncologist! I am sure you all know how much I love him, so I am glad that he'll be taking care of my Nan. She has met him before (when I was having treatment) and she thought he was nice so I hope that makes her feel a bit better.

My Nan is amazing, she's like my friend as well as the worlds best Grandmother. She is a very strong person and I do believe that she can get through this.
I am sure she would really appreciate everyone's thoughts and prayers.

* Me and my Nan. 12th October 2009.


It's almost 2 years since I had the operation to remove the polyp from my vocal chord. 2 years!! That's crazy. That means that cancer has been in my life for 2 years now, I was finally starting to not think about it every day and now my Nan has it which is crap...but c'est la vie! Just another bump in the road and hopefully once my Nan beats this, cancer will get the picture and stay away!!!!!! lol.

Things on my part are good, voice is good(ish), checks ups are good, hair is good...it's all good lol.

I hope everyone is well.

Hayley

Friday, 21 August 2009

37 ~ The one where it was a special day

Ello ello ello, long time no blog post!

I just wanted to quickly write in here as today is a special day...I have officially been in remission for ONE YEAR!!!!!! Wohooo!!

Can't believe it's been a year already, it feels like it was only yesterday but then at the same time it feels like it was forever ago. Very strange.

I am 20 now! Also, I was diagnosed 1 year, 9 months and 1 day ago!

Things are going really well, my check ups are every 8 weeks and so far everything has been good. I no longer see my oncologist, Dr Tahir (boo hoo) but I guess that's a good sign!
My consultant (Mr Pace) just checks my neck and puts the camera up my nose and down my throat every time I go. My appointments only take 10 minutes now!
My next check up is on the 3rd September.

I have a 24 hour ECG arranged for the 10th September (I think) to check to see if my heart was damaged by the chemo. I do get some irregular beats sometimes but I don't know if it's because of the chemo, my Doctor just wants to check anyway so we'll see how that goes.

My immune system is still a bit rubbish, I seem to get all of the bugs/colds these days! But I can deal with that :) I also feel tired more than I used to (before cancer)...but I will take tiredness and bugs over cancer any day!! lol

My hair is quite long now (see pic, it was taken last Sunday) and the burns on my neck are barely noticeable. Still have a few funny tan lines! Sometimes they're not noticeable at all but it depends on what colour top I wear, lol.
I've lost a bit of weight (thank goodness!!!!!!), I know I've lost 20lbs since March this year but since I finished treatment I'm guessing it's more than that.

My voice is doing alright, I still can't shout or sing but that doesn't matter. If I ever have kids they'll think they're so lucky that their Mum can't shout at them! lol.
I have a speech therapy appointment for next week as I've been having a bit of trouble saying words like taxi, Pete. etc - especially when I'm outside. I can't seem to get the power behind my voice to say the first part of words like that. I guess I'll get given some exercises to do and I'll just have to keep practicing!

I think that's all I have to say really - it has been really weird writing in here. I have missed it actually.

*Edited to add*
Just a quick request, I have been asked by my friend Jason to ask you all for some positive vibes/prayers for his friend Scott, Scott's wife Joanne and their Daughter, Maisy. They are going through a tough time right now (with this stupid disease). Thank you.

Saturday, 24 January 2009

36 ~ The one where Hayley said goodbye

Hi everyone,

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

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

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

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

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

Love,

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