OH MY GOSH!!!
Why do i only get told about these things a year after treatment????!!!!
As you all know, my cancer was in the nasopharynx and that area took a real beating. Every visit to the cancer centre they're dissapointed with the dryness and crust and ive done my best with steaming, the humidifyer and and salt water sprays (all of which i discovered myself or heard of through here or my ENT Dr tells me). So today i went to my ENT about the ears again... while he was there we had a look up my nose with the BEST nasoscope EVER! I saw my tumour site in all its fabulous technicolour glory! We're talkining pink, red, orange, green, gooey, crusty & everything in between. I could see every texture clear as day!! So Chin, the lovely nurse there the day i was diagnosed said - 'hey, i've got some free nasal flushes if you want' I though great! Sterimar is about £6 so freebies are good!
I gave this NeilMed a go when i got in... OH MY!!
I dont think it has ever be cleaned back there as completely and thoroughly since i finnished treatment! No wonder thet comment on my crust! cuz the stuff that flushed out my mouth was gross! & so sooo much of it!
I feel cleasnsed!!!
Now... i wanna know why we dont get a booklet with all these hints and tips to make our lives a little easier??!! Why do we have to find out for ourselves and piece it all together?? Why dont the NHS produce a booklet for life after radio therapy for head and neck patients??
Maybe we could do it?

You know, I would love to have a look at Bill's scans before and after and would also like to have a look with the UtN camera thingamy. Not that I am gory but think they would be very interesting. Dont say why don't you ask, Bill would faint away if I did, that certainly comes under the 'they will tell you if you need to know' category.

Do you know if you have to have a 'script for the NeilMed - sounds like it could do the trick.

No perscription... Apparently its available from Boots

Until we get the 'hints and tips' booklet that Chelle may wish to put together for us, here are some useful links. The studies I have come across support nasal rinses.

quote:

Saline nasal irrigation has been around for a long time and is referenced in medical textbooks going back hundreds of years. Saline, or salt water, gently cleans the nasal passages, and many sinus sufferers report benefits from simply swimming in the ocean.

Links:

• Nasal Irrigations and Oral Rinses
• Spring Cleaning for Your Nose
• Dr. Ketan Mehta, M.D., on Saline Nasal Rinses
• NeilMed Sinus Rinse
  
• NasaFlo Saline Rinse Kit

I'll be down there first thing!

Hi Chelle
I entirely agree with you on this. I have found post-cancer care, support and advice deplorable. Maybe it's no coincidence that we both attend the same Cancer Centre! Essentially all support stopped the day I got the all clear, even my great Macmillan team disappeared. I have also had several eye operations over the past year. If you have any concerns post-op you can easily get to discuss things with a specialist eye doctor the same day. Yet with all the worries we have who can we turn to? My GP is great but really can't help much. I was never warned about the possibilities of chemo-induced neuropathy, lymphedema or radiation cataracts. The Cancer Centre seem positively disinterested in after care. There is a whole mine of great information on this site, but it is spread out all over the place. So what about less fortunate folk without access to the internet? I suppose a head and neck cancer hotline would be one answer and would probably save the NHS money in the long run. Maybe it's just our local Cancer Centre that is poor in this respect.
Love and best wishes as always
James.

Hi all

Congrats to Chelle and Amir live long and prosper ( all wanted to say that).

Picking up on Chelle suggestion regarding a "DIY" for head & neck cancer.

What about setting up a pdf file? so they be read by all?

Regards


Tony

I found myself sitting in the cancer centre waiting room on my last visit listening in on conversations. There was a man really finding it hard to adjust with the dry mouth - as we all did. & it takes some time to get used to it. But the products and advice given are coming fom someone that has never gone through it themselves!
It's finding what works for you and going with it.
I'd love to put together a 'how to' manual! Something practical for ALL ages. Like advice on eating, lack of saliva, skin care, etc.
Wouldn't know where to start but hey!
We need a 'Life AFTER Head & Neck Cancer' book. With all the information in the same place!

& thank you Dr.Joshi!
I'm such a nose flush addict now! It's strangely satisfying!
Best not describe what i flush out after a days dog grooming though...........