Hi Oli

Your mum will probably soon get used to wearing the mask and after the initial setting up of the radiotherapy treatments, its not on for long anyway. I soon got into the whole routine of it when I was having it (mine finished six months ago). The mouth piece used to make me 'gag' at first but that soon got better.

I know its easy to say, but she should just try to relax whilst having it, however as Liz said, there's most probably some sort of medication available if necessary. Its just that fear of the unknown thing again! Some people have bad reactions to RT, but I can honestly say that I didn't find it as bad as I expected.

Hope all goes well for your mum
Wendy

Hi Oli,
When I had my mask on I found it a bit claustrophobic, so I asked the rt team if I could have the eyes cut out. It made a lot of difference, so maybe this might help your mum tolerate it a bit better. Good luck and love to you both.
Dian x

Oli,

During my rt they alwats had the radio on so that hepled me I sang along in my head to not think about laying there. If they don't have one see if you can bring your own.

Best of Luck,

Pam C.

Oli,

I had the eyes cut out of my mask as well. I also imagined being stuck in the mask during an earthquake and didn't know how to escape (overwrought diva that I am). I had them show me how to remove the mask using the toggles on each side; that got me out of any helpless feelings. Also brought my own music to play with their CD player. I was nervous the first two days or so but before the first week was over, I was settled into it. I counted the buzzes and zaps and hums that the equipment made as it moved around me. I had the pattern memorized rather quickly and it seemed to shorten the time (which is already pretty short).

I had IMRT which is easier on the patient than what your Mom is having, so I was able to drive myself every day to and from treatment. I didn't take anxiety pills but began pain meds (Vicodin) about the 3rd week into treatment, usually beginning in mid-afternoon. I have no idea why it hit me then but it could have been psychological in that I continued to drive myself to my late morning appts and do something immediately after them.

At that point I spent the majority of my time sleeping but made sure that I did something each day after treatment - like meet a friend for lunch or shop for food or go to a sidewalk cafe to read for a while. Then I'd go home and sleep - I'll bet I slept about 16 hours a day toward the end of treatment. Eating became difficult around the 3rd week too, but I was able to eat and drink enough to sustain myself. I didn't have a peg but had to down everything with liquid - either water or gravy of some sort. I had lots of soup (chicken with rice was my mainstay). Nothing tasted the same and it took many months for my taste buds to get back to normal (well, let's say near-normal).

Many of us have commented that after treatment we felt kind of let down. Going 5 days a week for 7 weeks is monotonous but we were being seen every day by techs and at least once a week by our rad onc. Once rads are over, we don't see anyone for a long time, depending upon the doc/hospital. I think the time ranges from one to three months, barring any unforeseen difficulties. That was a tough time!

I was warned that I'd 'continue to cook' for a week or two after completion (residual 'cooking') but that didn't happen to me. I worried about it and had some contingency plans for assistance that it turned out I didn't need.

It's a long 7 weeks and everyone experiences them differently, but the important thing to remember is that every zap is destroying cancer cells which is what we're hoping for.

Good luck to you and your Mom. She's very lucky to have you.

Take care,

Mimi

Lorazepam - Chaz was given it as a tiny blue pill to put under the tongue which was great - didnt require any swallowing
Cathy

Hi Everyone, mom began her Radio today-yipee, its just such a relif something has started, back tomorrow for the Chemo, will let you all know how it goes.
Oliver

Hi Oliver, good luck to your mum with the RT and Chemo. Hagg.

Hi llh, just logged into the site, I don't go on here very often now. I was diagnosed with SCC in left tonsil in Aug 2005. I had some major surgery in September and spent 6 weeks in hospital, I then started a 6 week course of radiotherapy in November 2005. It's now 2009 and I'm absolutely fine, a few long term effects from all the treatment and surgery (lack of saliva and inability to eat large amounts at any one time) but otherwise fully fit and well.
It's a tough time for you and your mum, all you can do is be there for her when she needs a hug, and always try to stay positive, there will be times when she just wants to sleep (especially thru radiotherapy) my thoughts are with you both.

Rosie

Hi Longleggedhair,
Have not been on this site for a long time,like Rose my problems are the same ( i had op etc in 2006) Your mum is in good hands- I had all my treatment at the same hospital and had great care. Now she is having r/t she will begin to feel not so good but the oncologist will pre-empt her problems and medication will be prescribed in advance for her.Make sure she does lots of mouth and jaw exercises so that she can keep her mouth open-stands in good stead for visits to the dentist etc if you can open your mouth!
Keep smiling!
Anne

Hi Ann, yes I must admit the QE are very good, just tiring the journey there every day, takes an hour and coming back in the traffic upto two! Now moms had three weeks of the radio she is feeling quite unwell, not drinking or eating at all, so I now see the need for the PEG! She is very sore and is using the difflam spray and th Muguard, and also gargling aspirin and taking co-codamol and Tramadol, just wondered if anyone had advice for pain relif as despite all this medication she is still in Pain.

Im quite concerned how quickly she has become ill, and she has chemo again on Tuesday, which I am worried will really knock her about.

Does anyone have any idead how long after the radio and chemo it is before they give you the all clear, and if it does not work what will they do?

I know sh is worried they will just send her away to die if it does not which im sure is not true, but I have been to scared to ask the consultant for fear of what he will say.

Oliver.

Hi Oliver

Third week of rads and chemo is really tough and what your mum is experiencing can be very much the norm (not that is any relief for your mum), even after finishing treatment you continue to "cook" for a while. Tell her to hang in she will pass thru this it easy to say but believe me she will.

you may want to ask about different meds perhas oral morphine and fentanyl patches.

Regarding meds perhaps the following maybe of help oral morphine for break thru pain is really helpful to gargle and numb the mouth pain.

Fentanyl patch for general pain control this is a synthetic drug administered via a sticky plaster takes awhile to get into the system but once it starts to work you can do away with the other pain killer meds no more swallowing tabs.

I wish your mum well please tell hear that the treatment is real tough and it does make you very ill but the outcome as you can see is positive there a lot of a live and kicking.

Regards


Tony

Hi

A question for Rose,
How long did you have symptoms for rose before you where diagnosed with SCC? Thanks

And Oliver - make sure your mum stays hydrated and to try and swallow as much as the fortisips type drinks as she can.
For me the worse of the RT effects waned within 2 weeks of it finishing. I didn't have chemo so i can't say how the combination will be.
If nutrition is a huge problem get a PEG as soon as poss.
Oral morphine helps too - better than aspirin etc and it gives a window of time in which take in nutrition.

All the best - your support does so much to help as well.

tony k