Hi
I'm Jayne and I had surgery) weeks ago for scc in my nasal cavity and upper palate. I now wear an obturator to fill the hole in my mouth. I am starting imrt and cisplatin in a few weeks. I am from the uk. I guess I'm just looking for support and tips from anyone about side effects etc.
It's good to feel I'm not alone
Jayne

Hi Jayne! Welcome to OCF! You are no longer alone with this illness. While there are not many with the same diagnosis, we are all head and neck cancer patients and their caregivers. Radiation to this area is not easy but you can do it! Please tell us more about yourself. How old are you? Do you have a caregiver?

Its a great idea to take all the well meaning people who approach you with offers of help and write down their name and contact info in a address book. Tell them at this time you will keep them in m ind for when you need a hand. The time will come when doing a load of laundry will be helpful. Or maybe they could drive you to treatment one day and take the burden off your caregiver.

If you are able to eat, now is the time to eat lots! Fill up on all your favorite foods. Dont be afraid of calories, they are your friend! Gaining a few pounds right now is a good idea. You will lose some weight during treatment as your sense of taste will change and eating will have some challenges for a while. Dont worry, its temporary.

A signature will help us to get to know you easier. Its under the 'my stuff' tab. Click on profile, scroll to the bottom and type in the box. Dont worry about being technical, write what you feel is important.

St11 scc nasal cavity/palate
15/3/11 surgery cl margins
Obturator
Rt and chemo starting 24/5/11
1 tooth to be ex 3/5/11
Age 45

Done it! Thanks I am eating quite a bit! Not easy with obturator but I'm managing quite well. I have my husband and three kids to look after me.I am pretty positive but get down days too. Having tooth removed next week won't be a good day but I will get through it!
Thankyou
Jayne

Welcome Jayne, glad you found us!

Ask any questions you may have, it is a great group of knowledgable people here to support you!

Welcome Jayne! Kick A$$ and Take Names! Anarchy In The UK!

Welcome Jayne and sorry to see you have and are having a pretty rough time at the moment. You have found the best place to ask questions and get support.
No doubt there will be many eyes watching the events in London over the next 30 or so hours.
Good luck with the tooth extraction on Tuesday.
Gabriele

Welcome, so glad you were able to find your way here for support. If there is any support or information that I can help yo with please ask. You can send a PM if you want to. It sounds like you have had the same surgery, and likely the same challenges that I have faced.

Sharon

Thanks for all your messages! it makes it easier knowing that you have all been there and will be able to help and advise me through the next part of my journey:)
Im sure i will be calling on your experiences to make mine easier.
The wedding has taken over the country!!!!
Jayne x

Welcome, Jayne! Ask away -- a few of us also have had a palatectomy and are living well with the obturator. We're happy to advise and support in any way we can!

Thanks chris
I'm getting a little more used to it but I'm told things will changer once rt and chemo start. I'm not looking forward to the side effects at all ! But I can speak pretty ok and eat ok too. I will always miss a good steak! But it's worth it all to get well. Even losing the teeth! My face is changing but I can live with it!

Jayne, I add my welcome. Sounds as if you're getting great medical care and have a wonderful family to support you the rest of the way. With your strong attitude I have no doubt you'll sail through the rest of your treatment with flying colors!

My thoughts are with you.

Oh, and... who's getting married, btw??

David2

I'm getting worried about chemoradiation and it's side effects. I'm expecting the worst with mouth sores and not being able to eat. I'm pigging out now getting ready for it! I'm sure I will get through it but am so apprehensive and can't think of anything else I have a juicer and am thinking about getting some manuka honey, and am praying it won't be too hard to get through.
Jayne

Thanks david2
I'm strong most of the time just have occasional blips!
The royal wedding was quite a do!
Jayne

Hey Jayne of the two chemo is the lesser of two evils - it just enhances the radiation. A few days of nausea isn't too bad. But rads really does suck - try not to worry.
Good luck

Jayne, many cancer patients need anxiety meds to get thru treatments. Many also will speak with a therapist. The meds take time to work so it would be a good idea to look into this now. Especially if it seems like this is all you have on your mind. I know how scary it can be and yes it will be difficult, you can get thru this!

Jayne - Try to avail yourself of all the helps you can and you have some good suggestions above. Stress and anxiety can really get to you if you let it, so when those "what ifs" come try to only allow a few short moments to devote to them. Everybody gets them (even us caregivers!) but do try to crowd them out with some more positive thoughts, like all the things that could go right. If you need meds to get through it, do ask your doctor about it. Everyone is different and reacts differently so keep in mind that you might just be one that gets through Tx with very little side effects!

Jayne-

All those above give great advice -- I agree with them that you need not be the least bit hesitant about asking for meds for anxiety, if that is plaguing you! I depended on Xanax to get through my rads, and even was relaxed enough afterwards to take a little nap. There are many options for dealing with mouth sores (which you can expect) - rinses, gels, and regular pain meds can help. You can do this -- you sound like a strong person!

Do you have a mask for radiation? Have they prepared you for how it's going to go (have you toured the room, etc.)? Any such preparation beforehand will help to alleviate your anxiety, too.

We'll all be thinking of you as you go through your treatments. Hang in there. Keep writing.

Jayne, manuka honey - are you a kiwi?? You are so not alone, I am a carer, not in the same shoes as a patient, but still living with it. Get all the meds you can - anit-depressants, anti anxiety, pain - 1st & foremost, and never be afraid to speak how you feel. My suggestion is to get a peg before treatment is too far in...you might need it, if not, it can come out easily. You might not be able to eat nutritional food when you are full on into your treatment, so you will need nutrution, vitamins minerals etc. You might want to invest in a tablet crusher, but always ask if the tabs you get can be crushed. There are meds you can take in a liquid form. Doesn't matter where in the world you are, we are all on the same ship......Jeanna xxxxx

Jayne, I am sorry you have to lose your teeth along with everything else you will go thru.I like a few others here lost mine too. To me this was one I wish never happened. Dont forget we are all different. If they mention Rad seed implants, think this one over long and hard. This procedure has caused me more problems than anything else. You will make it thru and be fine I pray. Good Luck As for the change in looks, LOL I'm used to that face I see in the Mirror now. He really isn't Ugly even with the nose keeeping the chin company.

Hi
Had my front tooth out and wasn't so bad got a nice shiny false one! I
Having 6 weeks rt with 4 days cisplatin in the first week and 4 days in the 4th week. Not looking forward to the nausea and the doc said I will feel wretched with the rt! Oh joy! I'm ready! Bring it on!

You can do it... The 4 and 4 of cisplatin is one I haven't heard - that's different. Maybe hospital protocol? Good luck - I just finished!

That's brilliant! You sound so strong and positive ! Hopefully I will get through it feeling the same
I worry about feeling or bring sick while having the rt and being bolted down in the mask!
Stay well
Jayne

The bolting is not too bad - I have to say I was surprised and grateful I'm not claustrophobic. E would lock me down, crank the music, and I would close my eyes! And be done with it. Yesterday was very emotional for me - I wanted to cry! Just so glad its over. It wasn't easy. But it's done.

When my son was getting zapped with the Rad Tx, he did pretty well with getting bolted down. He even had one of the nurses take his picture! I think he also meditated during the treatments. Patients were allowed to bring their own CD's. That way they could tell how close time-wise they were to finishing that particular Tx. If you are really anxious, tell the doctor - they may have other suggestions or meds to alleviate the anxiety.

Well I had my scan and mask made yesterday. It was really not too bad! Just uncomfortable with the Tongue depresser thing in and keeping still. I'm feeling better about having to wear it and now just want to get on with the treatment. Been told I don't need a peg as my throat won't be affected being radiated from upper mouth to nose area. But I'm sure the chemo causes a few mouth problems? Anyway feeling happier today and am going to stay this way for as long as possible.
Keep well

Your experience sounds really positive, Jayne -- that's terrific! Getting used to the mask can be hard, but it sounds like it's not too bad for you. Great. I, too, only had mouth and nose radiated, so no PEG. We're lucky there.

Sores may result from the radiation as well as the chemo -- you'll just have to see how you respond (it's different for everyone). I ended up drinking smoothies daily during and after those weeks of radiation -- eating became hard when the sores got bad. But pain meds helped a lot, as did topical gel.

Good luck with all of it! Keep up the positivity!

Hi chris

Yes I'm expecting the worst then when it's not as bad it will be a bonus! Hopefully:(
Did you have a very sore nose with the rt I was told to expect really burnt skin and nose bleeds, and that I should be not so bad with the sore mouth because of the Tongue guard and obturator? But I'm hearing other things from different people. But as you said it affects people in different ways, so I shall just have to see how I get on.
Thanks again
Jayne

Hi, Jayne-

Yes, I had a sore nose, but I think yours might get sorer since they are probably targeting your nasal area more than they were mine. I had mouth sores pretty badly, though...again, yours may be different as they are targeting a different area for you. I relied on my pain meds and my topical gel (I forget the name) to help me through! I did find that using a warm vaporizer in my bedroom helped a lot with breathing (which became difficult through the nose). I also ended up drinking a lot of dietary supplements (I don't know what you have in the UK -- we have Boost and Ensure and Carnation instant Breakfast High-Calorie) instead of trying to eat food that needed chewing. I wish you the best with your treatment -- write anytime with more questions!

Jayne, I know the mask can be hard for some people so I'm very glad to hear you've gotten acquainted with it and are doing just fine. It sounds like you are a very positive person and that will be a wonderful asset to have. Don't be afraid to ask for meds for the anxiety if they become too overwhelming. You need to take advantage of everything available to you to get through this hard journey with the most ease and comfort possible. Please know that I am sending positive thoughts and prayers your way. Take care and keep that strong attitude going!!! You've got lots of backup here.

hey jayne,
to me it looks like you're in a good place. ready for battle.
keep up that positive attitude. the advice from the people on here is brilliant. i wish i'd found this site earlier.
all the best mate
dave