Hey all!
I was contacted by one of the chemo nurses in Brighton today regarding research being conducted by NICE. They're looking into (finally) improving facilities and back up for young adults (like me). As previously discussed on this board, i felt like the odd one out, being 22 when i was diagnosed. Much is publicised fopr children going through treatment, and for those 45+, but the 20-30 age group particuly has nothing of relevance. All the sheets i was given had nothing specific to me. So i'm looking forward to raising awareness for the needs of people my age. It's somethimg i feel strongly about.
I was also told today that the treatment i went through doesn't come any worse! I had the maximum instensity of chemo & R/T that could be tolerated, so that explains ALOT (eg. the nerve damage). I knew it was bad, but i didn't know it couldn't get any worse! I don't feel quite so pathetic now! The Macmillan nurse at the time said they were "throwing the book at me", i suppose because my cancer is rarely operated on. So there you go!

Nurse was happy to hear how well i'm doing now, & i'm just apreciating every day!
All the best to you all,
Michelle

Well done
After all you have been through
Best wishes for now and the future
Dave and Sue

Hi Michele,
I love your courage, after all you have been through and now want to raise awareness for others of your age, well good for you.
I was on the chat line with Dr. Joshi the other day, chatting about what he was doing (one very busy man)and asked him if would be willling in the future (once I am over the RT) to give me advice about setting something up in Ireland. You know the stuff, awareness about Head and Neck cancer. There is none or very little here. I already know it is very iffy if I will be able to return to work. Age, speech, mobility the main problems, so would like to do something with my time. It would be great if you would keep any notes on what you are doing, or any printed information that concerns your age group. I would when I get up and running with my project, be delighted to use any material you have that specificly targets your age group. Dr Joshi did say he was involved in a program for student awareness. It might be worth it for you to pick his brains. (Sorry Dr. ha ha, know your workload, but you are the man with the info!)
Take care Michelle,
Speak soon.
SusieR

Thats our girl! well done Michelle

Susie,
That sounds like a great idea! Finding any kind of written information is going to be virtualky impossible i think though! I wasn't given a single thing specific to my age group. In fact, the Q&A sheet i had read things like "Will i still be able to visit my grandchildren?" "Can i still wear my dentures?" . Ok. i'm fully aware that (thankfully) cancer cases in the 20 - 45 age group are uncommon, and that H&N cancer doesn't count for a great amount of cancer cases each year (about 4000 i think?). So i wonder how many are in my age band? Brighton said they could only come up with 4 names - ,me being one of them. I wonder if Susanah, on here has been approached? I met her in Brighton when i was having treatment. But even though our cases are rare, i think peiple should realise they aren't invinsible! A cancer diagnosis was the last thing i expected, i wasn't even aware i had anything serious! & the when i was diagnosed i still didn't understand the seriousness of my condition. My life will NEVER be the same again. And perhaps if i was more persistant with my GP (ok, i went 4 times in 6 months, apparently not enough) maybe i'd have been diagnosed sooner and therefore would have had less intensive treatment. If's, But's, & Maybe's. But everyone thinks it will never happen to them. But i'm proof that it does.
The fertility issue was HUGE for me and nothing was done about it. Also, i was just starting my career as a dog groomer & some guidance of postponing it would have been good, i didn't know what was to come! Social aspoects of being a 22 year old weren't even mentioned. & then there's feeling like a complete outcast in the waiting room, and people whispering as you go in "ahhh, isn't she young". & bloody doctors talking to my parents or partner instead of me HELLO, I'M 22 NOT 6, I DO UNDERSTAND.
I'm glad they want m,y opinion on this, cuz it's important to me.

Anyway... enough ranting!

Hi Chelle,

Long time no speak! I do check the message board most days at work but haven't posted anything for quite a while. I have been following your progress though and I am so pleased that you are feeling so much better. It has now been almost exactly a year since I was diagnosed and I feel soooo well. As you no doubt feel, my self-image has totally changed with the alterations to the speech and eating, but I feel back to my old self in terms of energy levels and bounce and am back at work full time. I would say the most enduring problem I have is the dreaded saliva! I have gone against the odds all the way through this, what with being diagnosed at 26 with no risk factors, the failure of the tongue flap and now, instead of a dry mouth I still have really sticky thick saliva (7 months after the end of radiotherapy) which drives me up the wall! I honestly think dodgy saliva has been the single worst thing of this whole experience, from not being able to swallow it immediately after surgery (leading to some very attractive drooling!)to the changes during and after radiotherapy which especially affect my speech. I wonder if anyone else has found the same? I know having a dry mouth has its own problems but at least there are products to help - for my issues I have been told I just have to wait and see and maybe the salivary glands that are still functioning will adapt and create the right mixture again.

Anyway back to the point, it is interesting that there were only 4 of us at Brighton in the 20-30 age group. I certainly felt like the odd one out in the waiting room and it was great to meet you for that reason. I haven't been approached by Brighton but would definitely be interested in doing something to raise awareness. The fertility thing was a big thing for me too and I had to really push to see someone to reassure me about it. I remember reading you have had problems with your follow-up appointments at Brighton. That is so weird as I am also under Dr Simpson and they have religiously given me appointments every 12 weeks (I see the surgery team at East Grinstead inbetween).

Well, take care. I have signed up for the Mouth Cancer walk in October so hope to see you again there looking a lot better than the last time we met!

S

Hi Susana
I've also signed up to the walk, and i can assure you i'm far better noew than last time! I would say almost back to normal (whatever that is!)
Good to hear you're doing well yourself and back to work. Any news on your safari yet?
You'll have to keep in touch more!
Take care,
Michelle

Hi Michelle,
You really brighten up everyones lives. "May the force always be with you" !!!
Love,
Ananth

quote:

Originally posted by Chelle:
Hi Susana
I've also signed up to the walk, and i can assure you i'm far better noew than last time! I would say almost back to normal (whatever that is!)
Good to hear you're doing well yourself and back to work. Any news on your safari yet?
You'll have to keep in touch more!
Take care,
Michelle

Chelle,

The medical proffession gives you as much as you can take, so at your age they will have 'thrown the book at you' knowing that you would be able to recover better and faster than anybody older than you. What chemo did you have, and how much? I had cisplatin, 1000 of whatever they measure it in on the first occasion, but they reduced this to 800 on the second treatment because my eyesight was effected. I am short sighted anyway, but this went much worse, as did the long sight which I had only just been affected by before my treatment.
At 46 I was at the lower end of those usually effected by this type of cancer, but I still found that there were not many women of my age being treated for this.
The recovery process goes on a lot longer than you would think. My saliva has definitely improved recently, and I think that my sight is now back to what it was before the treatment, but these are improvements I have only just noticed 18 months after my treatment. I found that I would keep saying to myself that I was better, because I was so much better than I had been, but it is so easy to forget just where you started from after such a long drawn out illness, that I couldn't really judge whether I was back to my previous levels of fitness. My husband now says that I am fitter than I was before I was ill, but althogh I am fitter, I still am aware of lots of pains in my joints and muscles that weren't there before the treatment.

After the first few months when you notice improvements daily, you only seem to notice the improvements retrospectively. Do try and look back every now and then to see how far you have come, and to notice the continuing improvements.
Well done for overcomming what you have been through.
Jenni

Jenni,
I had 6 cycles of Cisplatin & 5fu, both at a very high dose as they suspected i had niodes on my lungs which turned out to be benign.
6 cycles seems to be alot, and my step dad always says he thinks if i carried on going every 3 weeks i'd probably still be getting chemo now as my oncologist "lost track" of how much i'd had!
I agree with you noticing things retrospoectively, evry week things are a little better. & i guess there are some things, such as thew saliva, tinnitus, muscle aches & nerve damage that will never be the same. So i've decided to just deal with it and move on. There's no point in stressing about things i can't change.

Ananth,
thanks for your reply! It takes one to know one!
Michelle

hi again to someone really full of life,

I think my flirting is working!!!!
At your service anytime Ma'am and always with a lot of love.
Ananth