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. ... View more

Hi Christina, The first days after diagnosis are mind numbing. There are so many unknowns. Once you have a plan things do become a little more manageable. I didn't have cervical cancer so I can't help you there, but there are lots of lovely people on this site who will chat to you and share their experiences. Not having your family around you is very hard. I imagine the Defence Force has counsellors and of course the Cancer Council is a fantastic support. Don't be afraid to ring them; I did many times in those early days - mainly just to voice my fears but also to clarify information. I found their support invaluable. Thinking of you CJF ... View more

Hi Ris654, You must be feeling a bit daunted by the prospect of more surgery, especially so soon after the thyroidectomy. My situation is a little different but I can tell you what it was like for me. I had a neck dissection 4 and 1/2 years ago. I had tongue cancer a few months earlier and found it had spread to the lymph nodes. I had a 'radical' neck dissection - I had 30 lymph nodes removed from the left side of my neck. I had an incision which went from under my chin down to the creases in my neck and around to behind my ear. When I woke up from the op I felt fine, a bit swollen, had 2 drainage bags and I had a lot of staples. I looked a bit weird but they healed really well. In fact my scarring is not too bad as the scar is in the neck crease. My neck skin is a little tight but that was probably exacerbated by the radiotherapy I had soon after. The only other real side effect is that I can't raise my left arm completely. The accessory nerve had to be cut as the cancerous lymph node was right next to it. My nerve was not severed, but 'nicked'. As a result my muscles are wasting a bit and my shoulder blade sticks out like a wing. I have regular physio and just this last year I have managed to swim laps. I also do exercises to maintain the movement I have. One last tip. My physio also started massaging my neck once it had healed. I think this helped to smooth out the bumps - there were a few for the first year but now it's flat and smooth. So, I hope this helps and that your surgery goes well. Please ask if there's anything else I can tell you. CJF ... View more

Hi Allicat, I think that dealing with cancer is a life long thing. How you deal with it changes over time, I tend to go through stages. Feeling sad didn't start till 2 yrs later. Up until then I think I was mostly scared, bewildered and angry - and sometimes in denial. Now I 'cope' really well - but I still cry every morning in the shower - a particular trigger for me. I just let it happen. I recognise that I am sad, that life is not exactly as I had planned, that I look a little different now, but I don't fight it - I allow myself to feel sad without beating myself up and once its over I get ready and go to work. I think in a perverse way I thought I should't feel sad - I should feel grateful that I am well, better off than so many others etc, but - it might be a little weird - but by allowing myself to feel sad, I actually feel better. So, there's no right or wrong way to feel or think about what has happened to us, we all face it in our own way. I hope you found some comfort with the counsellor last week. CJF ... View more

Hi Tony, The return of saliva and taste buds depends on your treatment. I had part of my tongue removed and some of my salivary glands were affected by this surgery so they will never return to normal. During radiation the remaining taste buds were affected but I think they returned after 3 - 4 months. I ate strong tasting foods which seemed to help make it a little more interesting. I saw a speech pathologist who taught me to swallow while I was in hospital but I still have trouble with soft or gluggy foods. I found that drinking water whilst eating made it easier - in fact I always have either water or a 'dry mouth' spray with me. There are also dry mouth chewing gums on the market if you can chew gum. 4 1/2 years on I don't really notice the difficulties with my mouth. I've become used to them and the little things I just automatically do now to make it easier. I hope this helps - and I hope you improve quickly. Cheers CJF ... View more

Well, I had my review and the GP management plan for my physio is set for another year but the dental plan is in doubt. The GP doesn't know what will happen. He thinks there are three options but doesn't know which one the Govt will choose. 1 continue to fund the program, 2. continue funding for existing patients (no new patients after Nov 1) or 3 scrap the program altogether after Nov 1. He wrote my dental plan up and has sent it off to ensure that I will be covered if options 1 or 2 are chosen. Has anyone heard anything more concrete? CJF ... View more

Hi Pimbok, I kept the mask from my radiotherapy treatments - the nurses helped me sneak it out under my coat. At the time I had a strong desire to turn it into a sculpture. 5 years later it is still there looking at me. I can't possibly throw it out but I don't know how to define it - don't know what I want to say with it or about it. I look at the marks on it but I can't put it on. I could return it to the hospital so they can reuse it - that would be the ecologically sound thing to do and yet I'm still hoping the answer will come to me. In the mean time it's gathering dust and in the way. CJF ... View more

Hi Silly, I don't think anyone knows the answer. I have never smoked, I've been vegetarian for over 25 years and prior to my tongue ( and subsequent neck cancer) I was slim and fit - gym 5 times a week, and very rarely sick. I am a teacher so my immune system is pretty good. My doctor told me that there were 5 main risk factors for tongue cancer - sharp teeth is the only category that applied to me. I feel that the immune system is very much involved, but just how, I don't know. CJF ... View more

HI, I have a GP Health Management Plan which includes up to $5000 for dental work and 5 Physio visits per year. I have a 6 monthly review with my GP (only 1 doctor) - having my next review on Wed. Dentists do have to agree to accept the plan - but I have found my dentist, the root canal specialist and the surgeon I have seen recently all too happy to treat me under this plan. My physio is also happy. Up until recently I have used the dental visits only for cleans. As I have had tongue cancer and have limited saliva I am susceptible to gum disease . I also had radiotherapy to the jaw and am at risk of osteonecrosis - hence the chronic condition label. I too have heard that the scheme is under review. I ill ask my GP on Wed. If you are eligible you should apply asap. It has certainly eased the financial strain of maintaining my oral health. CJF ... View more

Hi Locky, I think it hits most of us like that. In the early days of confusion it can be hard to know what to do. I think the crying is part of the shock. When I was fIrst diagnosed the doctor who gave me the news had some valuable advice - some of which has been reiterated here. He told me not to try to figure out what to do without all the facts, not to search through the internet where I would find so many conflicting views. He told me to wait till I had spoken to the specialists and had a clear idea of my individual circumstances before I tried to make sense of it. Then I would be in a position to make a plan and gain some control over my life. In the mean time, putting your thoughts and fears down here, and finding that others have felt the same way at some time, can help when you can't tell your family and friends. Take care ... View more