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,

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,

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

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.

36 ~ The one where Hayley said goodbye

Hi everyone,

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

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

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

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

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

Love,

35 ~ The one where it was Christmas

Hi all,

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

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

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

Lots of love

34 ~ The one where it was a year ago

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


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


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

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

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

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

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

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

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

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

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

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

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

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

Bye for now,