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 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.


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 - 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 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 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 - Thank you!


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 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!!


P.S Happy Valentines Day!!

Wednesday, 6 February 2008

12 ~ The one where Hayley had her mask made

I have heard there are troubles of more than one kind.
Some come from ahead and some come from behind.
But I've bought a big bat. I'm all ready you see.
Now my troubles are going to have troubles with me!
~Dr. Seuss

Hello everybody!

So, just a quick update (that's a bit of a lie) about how my last lot of chemotherapy went and then I'll let you all know how my radiotherapy planning went today.

Chemo went alright last time, had a few hiccups but I expected it cos nothing is ever straight forward with me lol. I ended up being disconnected a day early (last Thursday) because my heart was racing, I went for an ECG and everything was okay. I am still getting palpatations but no where near as often as I was. I'm still getting hot flushes...which I thought were because of the steroids but I haven't taken them for a while so it can't be them! It must be hormonal...all I know is, I hate them. I'm having one right now lol.

When I went to get disconnected from the chemo on Thursday Roger took one look at my arm and was like "Well, we're going to have to take this PICC line out" - turns out it had come out, a lot. It must of happened in my sleep. I didn't even notice the line was any longer! Haha. But it had come out LOADS so Roger pulled it out. I am very glad...I can now have a bath and put my arm in the water lol. I was strange without it for the first couple of days and I am also loving the fact that my arm doesn't get all skanky because of where the sticky tape is lol. All that's left on my arm now is a little bump! (See picture)

I just want to say thank you to all the chemo nurses at Broomfield Hospital - you are all wonderful! I really am grateful for everything you've done for me over the past couple of months. Thank you.

Today was my radiotherapy planning, my appointment was at 10:45am and we were a little bit late because there was no parking spaces! We didn't have to wait long at all, got called in by a nice lady (who said she was off to read my blog so hello! lol) and waited in a room for my oncologist, Dr Tahir to come in.
He explained all of the side effects of radiotherapy - the skin might get sore on my neck and I might have difficulty swallowing (but I might not, so the PEG is just in case). I think that's the main side effect, I have to read all the leaflets and stuff to see if there's anymore as I can't remember right now! Dr Tahir said that I will cope okay with this radiotherapy and it's nothing compared to the chemotherapy I had (which I didn't think was that bad!!) - I was really relieved to hear that because I was more worried about this than I was the chemo.
I will be having chemotherapy 1 day a week for 6 weeks (while I'm having the radiotherapy) - this is a different drug called carboplatin. Which is apparently similar to the cisplatin that I was having, but it has less side effects. The main side effect is kidney problems so I have to remember to drink loads and loads for some days afterwards.

I then signed some stuff to stay I knew all of the side effects. OH - I forgot to say. MY HAIR IS GOING TO START GROWING BACK. WOHOO!! The chemo drug I'm having doesn't cause hair loss. I am really excited. I do still have some left, it's like fluffy and light on top and then I have a little ponytail at the back lol. I think I am going to have to cut it off though and shave the rest of my head because when my hair grows back it will grow back completely different to how it was before. It's actually hard to imagine myself with a whole head of hair right now lol, when I look at pictures of me with hair and it's just strange!

I really love Dr Tahir, he's so nice. I like it because he treats me like an adult, where as I've come across some people who talk to my Mum about me. I know I'm only just 18 - but I am an adult and it's happening to me, so tell me about it! Lol. Only a FEW people have made me feel like a child though and it's not their fault as I am young and have my Mum with me all the time.
When I saw the Dr a few weeks ago at Broomfield I looked on the screen when he was looking at the results from my last CT scan and it said "Lympth nodes shrunk, tumour not responded" or something like that and I was thinking 'What the hell? I was told the tumour has shrunk!! And I've seen pictures to prove it!!" Lol. So, my Mum asked Dr Tahir about it and he said that is HAS responded and to just ignore what the computer screen said.

I start my radiotherapy on the 25th (I think) of February. I thought I'd be having a nice 4 week break but obviously not, lol. I don't mind, the sooner the better - eh? 5 days a week for 7 weeks...I was meant to be getting my PEG fitted on the 28th but Dr Tahir said he is going to try and change it so it's the week before I start radiotherapy because I might be a bit too sore to lay down so flat for a couple of days afterwards it's put in. I'm pretty nervous about having it fitted - but I know I'll be fine. I'm going to be sedated which I don't like the thought of cos I don't like not being in control. Haha. Plus, I wont be able to hold my Mum's hand while it's happening! Hopefully, there will be someone with a free hand to squeeze!

I also asked Dr Tahir when he thinks it's worth starting to work on my voice and he said that he'd contact my speech therapist and then she'll contact me. I'm looking forward to having a voice, even though I've got pretty good at whispering loudly! Haha. Sometimes when I'm out I notice people looking at me when I'm talking and they probably think "How rude is that girl whispering?" lol. My voice isn't coming out makes this strange noise. I suppose it just needs a lot of working as it hasn't been used properly (well, what I thought was properly!) since October the 17th to be precise lol.

This is getting so long and I've got lots more to say...

After speaking to Dr Tahir I went to get my mask made for radiotherapy, basically I had to have a mould of my face (and part of my chest) done so that I don't move when I'm having the radio. They have to be SO precise so they don't damage any other tissue - so I will be like stuck down to the table while it's happening, haha.
I went in to the room and there were two men (both called Paul) and I had to put a gown on and lay down on this wooden bench thing, they then put some goopy stuff on my face and then put strips of plaster on me to set and then that would make the mould. It wasn't the most pleasant thing in the world and I didn't like the part when they covered my eyes cos it reminded me of having a night terror (you know when you're trying to wake up and your eyes wont open?) - I think it took about 10, 15 minutes for it to all be done but my Mum was there to hold my hand (thanks Mum) lol and I just kept trying to think of other things. It felt a bit horrible when they pulled it off but I was so relieved, haha. BUT it was no where near as terrifying as I expected so if anyone reads this - and is having it done, don't worry. It's all good and it's over in no time.
Pete took loads of pictures of the process, I look like a Mummy!!

Don't I look attractive? In the top left picture you can slightly see the little bit of hair I have left lol.
I also asked if I could keep my mould when I finish the radiotherapy and they said yes, haha. I'm going to frame it and hang in on the wall like people do with
moose heads and stuff. Lmao. I'm just kidding...but I'll keep it and show it off to people, haha.

After that I met the sister, who was really nice too. She went through some stuff with me and then I went to the chemotherapy ward to go through some more stuff and then

And I think that's pretty much all I have to say...this was SO long. I don't know when I'll update again, I know I need to do it more often but it takes me so long to type all this and I can never be bothered, haha.

Thanks again for all your lovely comments, I love getting them so leave me some more!!


P.S Sorry about how messed up the positioning of the pictures and text is, I've been trying to fix it but I'm getting impatient so I give up lol.