Hi tuffcookie, 

I'm sorry to hear that the lump you found has turned out to be secondary cancer and that you will have to have your tonsils removed but I'm glad treatment is available to you. Do you know when you're due to have your biopsy? I hope you don't have to wait too long and that your radiotherapy can start soon.

Many of our members have been in a similar situation and I know a few have also been diagnosed with this type of cancer and I'm sure they will be along soon to offer their support and share their experiences with you.

Do keep us updated with your progress and remember that we are here for you if you need us.

Kind Regards,

Steph, Cancer Chat Moderator

hi tuffcookie

I have had the same cancer of the salivary gland,  also spread to lymphatic system and throat, it too was a secondary cancer. The radiotherapy treatment for this is quite brutal, but the first 2 weeks are OK.  if you are offered a peg for feeding, accept it, I refused and it made getting enough nutrition very difficult. Calphosol 2 part mouthwash is really good to prevent you getting stomatitis in mouth and throat. Get a soft toothbrush and gently clean your teeth 3 times a day. You will lose your sense of taste about 2 weeks in, eat nice smelling food to compensate. You will get some skin burns the radiotherapy team will give you some cream slop it on generously. You will probably get fitted with a mask to hold your head steady during treatment, this can be nerve racking first time. But you will quickly get used to it. Buy a sports type water bottle and carry it with you everywhere taking regular sips to keep your mouth and throat moist, a lip salve is also good as you may have dry lips. Aloe vera drinks from the health food shop can be very soothing on your mouth. Avoid anyone with a cold or cough, the last thing you need with a raw throat is a hacking cough, take precautions like washing your hands whenever you've been out, use one of those masks that you see chinese students wearing when they are sightseeing. You will get through it and come out the other end, the side effects will eventually subside, Im nearly 2 years on from treatment, I've had a few setbacks and further treatments but not so severe and have recently returned to work part time. Life is very good right now. Let us know how you are doing time to time and if you have any problems I may be able to suggest ways to overcome them. Good luck with whats to come. Kim

Thanks Steph, I am pleased to say biopsy/tonsillectomy date has come through for next Weds, 23rd which is quicker than I had expected.  Should get results 10 days after then I will start the prep for radiotherapy at the beginning of January.

Kind regards

Trudie

That's good news Trudie - not long to wait now!

Let us know how it goes and when you get your results. We'll be thinking of you and hope it all goes well.

Lucie, Cancer Chat Moderator

Hi again Kim, after I replied I thought of a couple of questions.  

Did you have 'broad' radiotherapy or had your Primary been identified enough that it could be targeted?

Did you get your sense of taste back, and if so how long did it take?  Cooking and eating is a big part of my life; if I have to find something else to do then so be it, but if I get my taste back it will be a bonus!

Did you have any teeth removed?

Did you lose a lot of weight?  I am 13 stone, 5ft 5in, having lost 1.5 stone this year through healthy eating.  So I have a safety margin going in to the treatment, probably the first time I have been happy at not being svelt by nature!

How long did each radiotherapy session last?

I am hoping to be back at work by the end of Feb, am I being unrealistic?  I am a management accountant with MoD so mostly in front of a computer, in meetings etc but I do have an hour plus commute.  I am working from home at the moment as I have some nerve damage from the first op on my neck which makes driving difficult.

I hope you don't mind me asking all this.  

Thanks, Trudie

Thanks Kim, I really do appreciate you taking the time to share your advice and experience.  It is encouraging to talk to someone who has come out the other side.

I am fortunate with work, I get 6 months paid.  However, currently on temporary promotion with impending interview for the permanent post.  I am by nature a hard worker but intend to do what is best for my health.

Luckily I don't have a sweet tooth!  However, I also think porridge is the Devil's food lol, hate the texture as well as the taste.  Looks like I will be living on Greek yoghurt!

Thanks again

Thanks Lucie, I will do, should be around 3 Dec

Hi again

I can see why you'd like to get back to work soon as possible as you are at an important stage of your career. You also have a good attitude that your health comes first. I returned to work too early and I think it took longer for me to fully recover than if I'd had longer to convalesce. I hope your employer is understanding and appreciates the hard work you have put in to date, and the hard work you will continue to put in once you have recovered. Impress upon them that you will get better and be taking up that post permanently. I am nearly 2 years on from the major surgery and radiotherapy and having a good life, there have been a few setbacks but I've dealt with them one at a time. I do still suffer from fatigue but Im told the best way to combat it is to actually do more! I think continuing work, if you can, is good for you, it gives you a sense of normality, its good to be interacting with people, keeping your mind active and of course an income is very useful. Book yourself a really nice holiday for next year after recovery you deserve it. Kim