Hi all   I've had pills get stuck in my throat. Luckily for me, my saliva is sort of OK and I don't have too much trouble with eating, although I do wake up in the morning with a dry mouth. I wear an obdurator because the hole in the roof of my mouth made to get the tumour out, never closed. I don't know if I want further surgery to try closing it again ... My main side effect is dry nose from the radiotherapy. I've had several bad nosebleeds due to the friable state of my blood vessels. Last week I had to go to ER because I had a bad one. Just discharged from hospital last Monday. I've now got a tiny wire in my head blocking a vein.   Catherine ... View more

Hi Bill   I echo others and say finish treatment. It is awful and terrible it is true but stick to the course. Not long to go! Once the thrush is cleared up, you'll be a mite more comfortable. Me:  I was doped up and zombified for most of the final treatment leg. My mouth and tongue was so painful I stopped talking and eating for over 2 months. Believe me, it DOES get better - just think of that and hold onto that.   I am now 2yrs post treatment. My transplanted kidney has now got the disease my original ones had so I have some challenges ahead but - baby steps. ... View more

Hi Bill   I've had oral thrush not connected to cancer treatment - it's quite common. I wouldn't worry about all the side effects. They are listed there for legal reasons, even if there is a tiny tiny tiny chance of them occurring. Just because they are listed doesn't mean all of them (or any!) will happen. Relax and take the medication. 🙂 Your care team wouldn't have given you the script if it was dangerous. 🙂   Catherine ... View more

Thank you for starting this thread! I need it now. I got a call last night from Renal that my transplanted kidney now has the disease that my original kidneys had. So I am starting to tidy up at work to leave by the end of the year.   The three best things in my life right now are: My husband, cat, family and friends My memories of a very recent UK holiday with my sister Spring! Flowers, green leaves on trees and the promise of warmth   My colleagues have been incredibly supportive too. I've been really lucky to have had an interesting and intellectually challenging career.   There are some upsides to everything. Retiring (young at 48) means I will have more time at home with my husband. Why leave work early? Because there is no way to tell how long my transplant will hold out for and quality time with my husband is my #1 goal. My mantra? Do nice things and be nice to yourself.   Catherine ... View more

This is a great idea! Thanks Captain My type of cancer: Mucoepidermoid carcinoma of the left sinus - it's a type of salivary gland cancer My prognosis:  My ENT surgeon said when I asked 'ahh, 50%, 75% ...'  No stage given but it wasn't the aggressive type, more the slow growing type which I may have had for many years. Must be low grade. It's a rare cancer so there isn't a lot of information out there. My survival time:  It's been 2 years since diagnosis and I am in remission. I have an MRI once a year. It was lucky that the cancer was picked up at all. I have a renal transplant and have regular blood tests. Blood tests in April 2017 showed  inflammatory markers. My word of advice:  Do all those exercises! Seriously, listen to your sick self. If you don't want to do something or feel ill or stresses or you are having an awful day, tell people. It is also true that you change, but you change throughout life anyway. Do nice things for yourself - sit in the sun, read, play with your pet, spend time with loved ones. Of course there is a quest for information. I work as a medical librarian at a major metro hospital and knew of some resources. MacMillan Cancer Support has some great information https://www.macmillan.org.uk/information-and-support/treating/after-treatment  ... View more

... And I forgot to mention. Dry mouth with effect your teeth. I was referred to a specialist dentist and see them every 3mths. I was advised to use Tooth Mouse which strengthens teeth. Also do those exercises if prescribed by physio - neck and mouth stretches etc. I find that if I don't do my mouth stretches, my jaw can get stiff and I find it hard to open my mouth. Everyone has different experiences but we are all doing this together. 🙂 ... View more

Hi Bill   I hope you get on well and sail through it! Simon has given you lots of info about PEG which is great - thanks SImon! I didn't have one. Mine was a sinus cancer in the mucous membranes, on the left (what is it with the left side of the body eh?!). I had a nasal feeding tube while in hospital because my upper left jaw was removed and I had fat put into the cavity where the tumour was - I was nil by mouth. I've got a pretty good pain tolerance too and I hate taking pain meds but I had to take some by week 4 or 5 as I was literally crying with pain as I tried to eat (main problem was a very burnt toungue from radiation). Even then I didn't have PEG although I stopped eating altogether and tried to drink those protein shakes that the nutritionist gave me (they were so thick I had to do 1/2 shake 1/2 water). When I was on endone and (the other one begining with t - can't think of it atm) my husband was frightened because I was basically a zombie. I had stopped talking.   However, I am now back at work and am going back to full time next month. You do get back to a sort of normal. It's taken me two years to get back to my weight before I was diagnosed (I was about 47kgs and lost lots of weight - nearly got to 38kgs).  I may have more major surgery in the future because the fat that was taken from my abdomin and put in my face  has shrunk lots - more than the plastic surgeon has liked. So it is back to eating fatty things to get that fat for my face! That's one of the things about radiaton - it shinks tissue. The other thing is that it damages your thyroid. I'm on thyroid hormone but it seems to be fixing itself as the amount I am taking has decreased.   Simon mentioned PubMed - that's great! I am a medical librarian and work at a major hospital in Melbourne. The main component of PubMed is Medline, a very large US biomedical database (hardly any Australian content) . Most of the content is clinical but there are some consumer websites out there. I can look for information for any on this forum if ppl would like. Even clinical papers have to be taken with a grain of salt - it is common to use a system called critical apprasial which is basically assessing whether the information is evidence-based and can be used in practice.   And no, I didn't look up my cancer haha!   Catherine ... View more

I'm almost 2 years post radiotherapy and I am almost back to my normal weight. Near the end of treatment, I stopped eating and talking (I carried a little notebook around with me). I lost so much weight that I was underweight at 40kgs - a feed tube would've been an advantage. I drank those protein drinks - they were so think that I mixed 1/2 with water but it was very hard due to a burnt tounge and loads of ulcers. I think my saliva is coming back and I can taste things OK but I have a hole in my palate that hasn't closed over so I have to wear an obdurator (getting used to it now) to be able to eat, drink and make understandable speech. Mucositis wasn't too much of an issue for me luckily. ... View more

Hi AprilS - my last appt was on Feb 7th and I now only have to have an appt every 6mths! I just have MRI scans twice a year. I hate them! My oncologist is Mori Wada but I do see other oncologists sometimes. Mori is great - last time we had a nice chat about Japan. The staff at ONJ are great aren't they? ... View more