I am a 48 year old mum of two, (18 and 16) who is in remission from tongue and neck cancer. I had a partial glosscetomy in 2006 and a left side neck dissection in 2007 followed by 7 1/2 weeks of radiotherapy. Last check - all ok. I stumbled across this site during the weekend. Browsing through the comments it is clear that this is a place where you can actually put all of those thoughts that keep you up at night into words that others will understand. It's almost 5 years - the magic number or so I'm told - yet the fear of cancer returning is almost paralysing. I am about to start Hyperbaric Therapy on the 26 Sept in preparation for the removal of a tooth. It's not a big deal yet that feeling of 'here we go again' is oppressive.
Yes here is the place to say whatever is on your mind.It's great that you have been going well for so long.Is the tooth removal connected to the cancer or side effects of treatment?
Here you can also see what others are going through and it takes your mind off your own worries sometimes .
Yes, I am very pleased that I am well. My tooth removal is the result of a cracked tooth - clenching in my sleep - stress - who would have guessed? I had my root removed easily - my dentist used a "dam" so all work was contained. I am very worried about the removal of the tooth - no "dam" so I have to deal with big gap at the back of the throat. I had my tongue tied at the back so little control of swallowing. On the up side - I talk very well.
I am also a bit worried about the Hyperbaric Therapy. Has anyone here had this? I believe that the treatment is fine, but ... stupidly I read adverse long term effects reports on the internet.
You're right about this site and the 'talking' taking your mind off things. I only found this site 5 days ago. I posted a couple of thoughts and the responses have been so supportive. I had my first night of real sleep in years. It helps to find people who just get it.
I can't get off the merry-go-round either. It seems like just when I think I've reached some magic place of recovery I end up back in the doctors office, in for tests or bed ridden. It has been 18 months since diagnosis and when people ask me when I finish treatments and i tell them they look at me like, so...... why aren't you back at work, back to being you.
I wish I knew. Just when I think I'm on the right track I push too hard and end up with shingles or some other complaint. It is tough to know how much is the right amount to do.
Glad you found the site. I was on here a while ago and just got a reply today. Funny I think I needed it more today than before. Funny how things like that work out isn't it.
I am glad your first part of the tooth removal went well. I have no idea what hyperbaric therapy is. What is it for?
Hi 'Survivor says'
Hyperbric Therapy is basically "oxygen therapy at pressure'. It is used for among other things, divers who have the bends, diabetics with wounds that won't heal, crush injury patients and cancer survivors who've had extensive radiation to the jaw area and find they have to have a tooth removed. Because the radiation damaged the bone in my jaw, any surgery can lead to osteoradionecrosis - the wound does not heal and the jaw dies - leading to a jaw reconstruction.
I have just finished 30 treatments and the results look promising. I had 20 visits before the removal of my tooth - which went perfectly - and 10 after. The wound is healing almost as well as 'normal' people and as a bonus the swelling in my neck and shoulder (surgery and radiotherapy related) has reduced markedly. There are Hyperbaric chambers in major hospitals in each state, as well as some regional areas. A number of Head and Neck patients on this site have had the treatment too - although not all have had the success I seem to be having. I just finished on Friday so will really know how it has gone in another month or so.
Re the time it is taking you to get "back to normal" - I finished radiotherapy 4 1/2 years ago and still find that I do too much and have to just stop. It takes a long time and it is very hard to realise that there are things that you just can't do and will never be able to do - and harder for others to realise when you look ok. I think that what people don't realise is that the seemingly same treatment can be vastly different for patients. I was so sick with radiotherapy that I when I wasn't at the hospital I was in bed asleep, yet a colleague worked right through her radiotherapy - obviously a different cancer, different levels and different side effects etc but to our work mates it was the same. I think It was at least 2 years before I had enough energy to go through the day without a nanna nap - and I still have one occasionally! Don't be hard on yourself - give yourself all the time your body and your 'self' need to feel strong - you've been through a lot so give yourself time.
I sure hope your tooth and hyperbric therapy continues to work well. I am amazed at the new technology. I have never heard of that treatment in Canada although it likely exists in the major centres.
I also had a very difficult time during radiation but had a nurse at the very start tell me it was going to be a piece of cake so I felt like a wimp if I said anything. Finally after a major burn and some cream prescribed for me I felt so much better. I don't know why I didn't say something to argue with that nurse when I first felt the burn and she told me that we should wait. I knew it was wrong but I couldn't say anything. I will always regret that but now feel like i speak up more.
I have been up and down so much I am determined to take it a little slower, be gentler on myself but it is the looks from other people I've had to learn to dodge and the guilt I have for not being everywhere with my kids and doing the things I used to do with them. That's a tough one.
Yep, naps are good aren't they.
Can't imagine having to go back to work and not be able to have one whenever I want to but then there are so many other things I'd like back I guess I'll get there.
Thanks again, you're right my body and brain have been through a lot. It's tough to reflect on just how much. I had my eyes checked the other day and I used to have anxiety for the drops and puffs into the eye, after the last 18 months I couldn't believe I used to get bent out of shape.
Hi CJF I can relate to your apprehension I go into deep anxiety when I have to go for a check up I know how important it is but I always am so uncertain even when my voice sounds a little hoarse I immediately think it's back for about a second then I decide I need to be more positive just get on with things.
I hope hydrotherapy goes well , my partner works at a private clinic in Mascot and says it does work .
Let us know how you get on ..
Tae care Rod
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.