Wow...I haven't been on here for a while!

Well, some of you may know me but to those who don't, a quick bit of info on me:
In Nov '07 I was diagnosed with cancer of the larynx and I have completed 10 cycles of chemotherapy and 35 radiotherapy treatments.

I finished treatment 8 weeks ago yesterday! It's flown by. I think I was pretty lucky with the side effects of the radiotherapy, I think I took pain killers once and I managed to eat the whole way through (and put on 3 stone while I was at it, thanks steroids...NOT lol) - I did have a PEG but I didn't use it. My throat did get quite painful but I was determined to keep swallowing so I didn't forget how to...I was really worried about that, I wasn't worried about pain...just the thought of not being able to swallow freaked me out.

The last check up I had was the other week, it's all good No swelling down there...consultant is happy. Still don't know if I'm in remission or not, I'll have a CT scan at some point. Fingers crossed

My voice has come back, after 7/8 months of whispering! It sounds a bit croaky but I've started speech therapy and hopefully I'll be able to get it louder (it's really quiet) and less 'breathy' as I was so used to whispering.

Anyway, I thought I'd give you all and update of what's been going on.

I hope everyone is well

Love, Hayley xxx

www.kickingcancersarse.blogspot.com

P.S Is anyone doing the Mouth Cancer Awareness walk this year? In Hyde Park? I'm thinking of doing it!

Hi Hayley

Good to hear how you are doing. Sounds as if you have done really well and are still staying so positive. It must feel great to be able to speak again. Keep it up - you are doing great! And, as you say, fingers crossed that all continues to be well.

Pete (my husband) and I are doing the mouth cancer walk this year - I just had a piece in our local paper about it. Perhaps we'll see you there.

Love

Gwyn
xxx

Oh, that's great! Yes, I might see you there! If you read my blog you'll see pictures of me so you might recognise me there.
xxx

hi hayley
nice to meet you,well you have done really well and being able to eat is fantastic,the fact that i still cannot eat 16months after treatment finished is whats holding me back.i think you have done fantasticlly well done you. love shirl xxx
p.s glad that there is no swelling too.

Hi Shirl
Sorry to hear that you can't eat still. I really hope that it improves for you.
xxx

Shirl..........just read your post. Why is it that you still can't eat? Is it the swallowing, or pain, stress? I also couldn't eat for a long time but little by little it got better. If you want you can email me and we can compare notes and maybe figure something out. I'm at sablethree@snet.net. Let me know

hi joan
every time i eat i am very sick,continual dry retching.the doctors dont seem to have any answers for me.everyday i try to eat something.i usually manage 1 sice of bread with corned beef in of a morning,and evening time sometimes i can manage half a can of soup.my daughter bought round tonight a mild curry i had 1 teaspoon and the pain in my mouth was so intense it made me cry and the burning went on for half an hour.love shirl xxx

Hi Hayley, glad you got through the treatments ok and the checkups went well. Kicking ass is the way forward . Hagg.

Hi Shirl.........I checked back through my journals that I have to keep for the swallowing therapist. It's all about the food I try to eat and almost everything I ate would burn my tongue......some still do. I used to eat puffed rice with a little sugar (which really burned) and half and half. That cereal was good because the puffed rice would get soft and slide down. I also make lots of soups and freeze them but I have to say that they are really mild, yellow squash soup, cheddar cheese soup, cream of broccoli. Most of the recipes have carrots and potatoes so I cook them in my pressure cooker and kind of smash them up because I choke a lot. Sauces and graveys are good over mashed potatoes. Do you take a pill for nausua? I used to take Nexium but the insurance company wouldn't pay for them so until 3 days ago I was taking Prevacid, the insurance comany paid for them and guess what........they're more expensive than the Nexiun.........go figure. Shirl, try mild foods and I do drink lots of half and half also fish is pretty good for me (scrod). Here's hopeing things will get better for you.

Hi Hayley, just to galvanise Hagg's point, well done in your recovery, like your attitude.

A walk sounds good, what a great prospect of some of us meeting up this year for such an event. Any ideas of volumes of traffic of us lot? as I saw Pauls request about traffic using this site and I too am curious how many sufferers there are, certainly I appear to be the youngest in 2 weeks of hospital visits, which is great considering all the noise about very young cancer patients of late.

Hi Shirl, I am saddened to learn of your difficulty in eating. I am undergoing treatment at present, with a long time to go so please excuse me if I am not in full comporehension of your difficulties because of my situation being easier at present.

Of course one of my main concerns at present is money, more to the point how to survive, especially when dietary and medicinal components become increasingly necessary. I was told about the Macmillan Cancer fund where anyone can apply for a grant, up to I recall 500 Pounds sterling.

So I have applied. I use 100% aloe vera gel (5.00Pounds Boots the Chemist) which is my active force field when under the machine, and have bought a blender. Its called a Smoothie, manufacturewd by Kenwood, bought on the high street for 40pounds. It has a three year guarantee and comes with a free recipe book. I was not so impressed with the book, however the machine works well. So I borrowed a book "The big book of juices and smoothies" by Natalie Savona. This again is pretty basic, hardly compares with a former favorite book of miine "red hot chilli pepper" by Jenni Fleetwood.

Where is this leading. Have a go on the smoothies if you can, they do seem to work for me and I feel will you too, just to add a little comfort to your eating difficulty at present.

Who knows, could be chilli time again before the summers out.

Thinking of you. Nigel

Nigel, I applied for certain benefits and funds when I was ill and got turned down for most of them (Disability Living Allowance etc). My MacMillan nurse and a social worker from my local hospice helped me re-apply for them and I got them in the end.
The benefit system is only there to make life easy for people with imaginary illnesses and lazyitis . People who are genuinely suffering from serious illness are seen as liars and cheats a lot of the time, if you get turned down for anything get some expert help and reclaim if you can. Hagg.

Hi Hagg, Just read you posting I cannot tell you what happened to me on here but what you say is perfectly true.

Hope we meet again oneday and will tellyou.

Nigel, They must be a Disibility Advice Centre near you go there and they will help you sort out the monetary aspects.Would have been good if I could have helped but too far away, good luck and let us know how you get on.

Paul

Good to hear from you Paul. They're a bunch of robbing b*****ds. It really winds me up because at that time in my life (the worst time) I couldn't deal with many of the things that I could at any other time.
When we applied for housing benefit, our local council insisted that I went for an interview to prove I was as ill as I said, a drs letter wouldn't do. I was 6 stone, really weak and couldn't even talk. Haze had to talk for me, the council officer was really patronising. If I see him again I'll knock him out .
Hopefully we'll get to meet again at a MCF do sometime and you can tell me your story. Take it easy Paul, Hagg.