Hi Ben,   Sorry to hear of the side affects you are having.  It is really still early days post treatment and as other members have said it does take time for things to return to a new sort of normal.  I would say a good year.  The first three months are the hardest with the most affects lingering.     For the rebuilding of the throat, jaw and mouth tissue the best thing is to be eating and drinking.  Have you managed to return to solid food?  How are your meals looking?  I found it took around 6 weeks to 2 months to be able to eat a complete solid diet again.  After three months I found chewing was less painless and less tiresome.   It really takes time for the tissue to rebuild.     Even until now, I am 5 years out of treatment this month, I get muscle cramping/spasms in the neck, tongue and throat.  However, it is manageable.  I can eat and drink anything but the dryness in the mouth is still an issue for salting or dry foods, I need water on hand. Time really is the healer so you will need a bit more patience, I know that is a big ask considering what you have been through with treatment but it is achievable just take one day at a time, one week at a time.   All the best. ... View more

Hello all,   I am just behind Simon with my H and N cancer  journey...4 and half years out now.   I can say that everything Simon has mentioned is what I have experienced.  My thyroid condition was diagnosed two years post treatment and I'm taking thyroxine for it.  But like Simon I have had a considerable weight gain which has been highly frustrating and near impossible to move.  Things have never quite been the same again.  I can add that over the past few months I have been developing rashes on my neck that flare up with stress etc.  Tinnitus is something I live with and lack of sleep and stress will elevate it.  Swallowing dry food without liquid on hand can be tedious; just not enough saliva to deal with dry food.  However, this doesn't prevent me from eating dry food I just need water while eating.   I returned to full time work within 6 months after treatment ending.  I work as a teacher and returning to the classroom has been nothing short of therapy for me.  It has helped me to get on with my life with a new perspective that only this cancer journey could have helped me to find.  I feel grateful and forever appreciative of everyday I live without cancer.   Yes life will never be the same, but being alive and witnessing another day is something to smile about.   For those in treatment, head up, it will pass and you will find the new and redefined you; better days are up ahead just keep strong and stay positive.   April  ... View more

Hi Andrew,   Sorry to hear about your reoccurence, not what you want to hear.  Please let us know how you are getting on hopefully you will start your treatment soon and get it over and done with.  It is a difficult road but there are lots of people on here that have travelled the same road and got through.  I'm over three years out now and life of course has never quite been the same but I got through and recovered.   Take care best regards. ... View more

Good on you Bill....one to go!!!  You have definitely fought the good fight!   HN treatment is beyond words, I absolutely know where you are at right now.    When I finished treatment I couldn't sleep flat I had to sleep on a few pillows or upright.  What helped.  -   I got a humidifier for the bedroom that was excellent -   Showers (once you get the go ahead from the rad burns of course), the steam was good for loosening the mucous -   I also used a nebuliser 5 or more times a day to break the mucous down. -  Water, as much as I could handle orally.   Warm dry rooms are the worst place to sleep, try to keep the room moist with steam.  After treatment it will get a bit worse before it gets better but treatment is OVER so you are on the better end of things now.  It is time to heal, rest and recover.  Things will never quite be the same but you will reach a new normal....eventually.   All the best Bill, stay positive!   ... View more

HI there Bill,   Yes I experienced exactly that in the last week of treatment.  I went into radiation oncology and told my oncologist that I wasn't gong to continue that I couldn't continue and how I wanted to give my body a chance to fight ( I had been doing a lot of reading on natural remedies for treating cancer and how to activate the bodies ability to fight).  He just looked at me with such sadness and told me to follow him into his office.  I sat there with my husband and the oncologist pulled up photo's of my neck prior to the neck dissection.  He said we do this when the body wasn't able to fight.  You have four kids, you are very young to be here you have every reason to live....You have to complete this, we will get you through.  Of course I broke down and all my husband could do was exchange thankful glances with the oncologist.   I got through, I continued the treatment, I had to .... I had every reason to live.   So do you Bill.  Head up...and fight the good fight!   ... View more

And Simon....what's this celebrity status I hear?  Did I miss something?   ... View more

HI guys,   Absolutely couldn't agree more with what Simon has said about side effects...all the way.  I am just now having issues with my thyroid and will be started medication very soon.  I have tried to manage it with my naturopath but my numbers are just increasing and I moved from a preclinical hypothyroidism to fully blown hypothyroidism.  Unfortunately medication is the only option.   With the mental well being the mind can really go to far away places with a cancer diagnosis.  I think th key is despite the diagnosis try to look at the positives of this.  HN cancer is treatable and is curable and has a very good prognosis.  Remember you are being offered treatement with a curative intent and in the cancer game that is wonderful news!  Don't over read things on the internet you will give your thoughts to too many things, just go with the flow of treatment some things you may not experience.  However, I would say the things that have been mentioned on this thread are pretty much stock standard side effects but everyone of us, to a varying degree.  Everyone of us went into this with a varying and diverse medical history, state of health prior to diagnosis and ideas and preferences about life and health in general.  All of that will make your journey yours and not mine or anyone else's.      For me I feel empowered by doing things that are in my hand.  Getting cancer and having to go through the treatement and so on ARE NOT IN MY HAND.  However, looking after myself, eating right, excercising, doing things I enjoy, teaching, seeing my naturopath and keeping as healthy as I can IS in my hand.  Empower yourself with things that are in your hand and don't worry too much about the things that aren't in your hand.  I'm a teacher so returning to teaching was a wonderful milestone for me after coming through this.  Throughout my treatment I was actually studying and I found a great deal of normality despite the side effects to sit down and do something normal in my life.  I tried to keep my life as normal as possible, pulling myself up from the misery of treatment and pushing forward with things that gave me hope.  Family was a big thing....my parents are in their mid to late 70's and seeing me go through all this was horrendous for them.  This whole experience has changed the way I see life now, and it has been I can truly say a positive thing.  I appreciate the small things in life now, cooking for family and spending quality time with each other, teaching my students helping them to reach their goals and looking back and saying thank God I can eat, drink, talk and smile again.  Life works in mysterious ways and a lot of it we don't understand but I truly believe everything happens for a reason.   So, Bill keep your head up get yourself physically, mentally and spiritually prepared for this as only you can push through this, no one can do it for you. ... View more

HI there Bill,   I can add to what Simon has said.  I agree, at your weight I would really recommend the peg as losing weight is inevitable with radiation treatment as the damage is far too great to maintain a "normal" intake.  By the end it is all about getting enough protein in to survive and anything extra that will support the healing process.    Personally, I didn't want a peg and was determined to get through without it...which I did.  By the end of third week of treatment I was on a liquid diet consisting of sustagen and any other protein shakes I could get down.  By week 5 my intake was restricting and my dietician was talking about nasal feeding if I was unable to up the intake to maintain the recommendded protein intake.  Getting protein shakes down became a traumatic and painful chore.  I lost over 30 kgs and by week 6 of treatment I was unable to even drink water...being a stubborn thing I went to bed a stayed there living on sips of water for the first weekend that treatment ended.  I truly thought I had met my end that weekend, my husband begged me to go to emergency but I thought I would rather die here than there.  I think the weight I had going into this and the otherwise healthy state I was in helped me get through without a peg...and perhaps being a stubborn thing when it comes to medical intervention!  Like Simon said, do your homework and be ready to make decisions based on your own research and individual preferences.   I can say each day was a step to recovery .... a very small step and by the monday I was getting one of my shakes down again (I should have been taking 4 a day)....but still losing drastic amounts of weight.  Like Simon, I had a bit of weight to loose going into this, excercised regularly and maintained a very healthy diet.    I also take ALOT of vitamins and supplements but as soon as treatment started I was told to stop all of them due the interactions with chemo.  So my advice would be to vitamin up now while you still can....C is a big one....if you can source IV administered Vit C I would definately advise that.  If you are in Melbourne I can recommend the NIIM clinic (www.NIIM.com.au), they do high dose Vit C over the IV.   As for pain management......you will be offered a full range of drugs to get you through this.  It will be up to you what you take and don't take.  BUT...you will be on heavy handed pain releif for some time.  It is all trial and error about what agrees with you and what doesn't.  As the side effects ramp up so will pain releif....my advise don't suffer in silence.  I hate any sort of medication, we eat organic produce I cook from scratch, we avoid toxins and nasties wherever we can.  So going into this it was very confronting to be offered so many drugs.  However, I soon realised it was a temporary measure just to get through.  For me fentanoyl patches worked really well as I stuck a strip on my arm and it went into the blood stream without taking anything orally.  The dose could also be increased as needed, but with increased dosage came increased drowsiness.  I was offered cocain mouth wash which I refused to take so they offered me other numbing gels to use when trying to get my shakes down.  Aspirin is not going to get you through this....you are going to go to the boundaries of your outer most pain threshold you will need all the pain releif you can get.  The downer on all the pain releif is you will be very drowsy and spend alot of time sleeping.  Be prepared to rest up, your body will take a battering and rad and chemo are already exhausting...on top of that you will get the drowsiness from pain meds.   As for my diagnosis, mine was an unknown primary that has spread to one lymph node in my left neck...so stage 4.  Due to the unknown primary, despite having a neck dissection to remove the affected lymph node, I had to do rad and chemo.  I should have done three chem, as is standard practice, but I couldn't do it so I refused (with consultation with my chemo oncologist) to do it.     ABout mobility, I didn't suffer any problems with being mobile....just extreme tiredness.  You will need to rest as much as you can to face the rad every day for 6 weeks.  The first 5 weeks of rad are completely manageable and you may even be still eating.  There was another guy having the same treatment as me and he was drinking coffee 5 weeks in!  Everyone is different, but by week 5-6 you will quickly lose ability to eat/drink and even swallowing will be painful.   Simon can give you more heads up about the peg. I am two years out now and pretty much back to a 'new' normal.  What remains - limited saliva production and thyroid damage.  Small price on the greater scheme of things.   ... View more

HI Bill,   Really sorry to hear about your diagnosis.....It is shattering news, I know how you must be feeling right now.  You sound like an incredibly fit sort of guy at 70 to be running marathons!....Good on you!  Unfortunately this terrible disease does not discriminate, at all.   You will be guided by your oncologist and surgical team about the next step, as you would have gathered from this thread every cancer is different and while we have all had Head and Neck cancer our treatment has been different.  Saying that, the main treatement for HN cancer is radiation therapy.     Just take it as it comes Bill everyone has had their own journey with this and you won't know how this will affect you until you are in it.  Hopefully you have a good support network with family and friends.  You will need it. Hopefully you will get some direction on what next for you as far as treatment or surgery goes.  All the best and stay positive Bill we are all evidence you can get through this!   Sending heart felt regards, April   ... View more

Hi Sheryn,   Sorry to hear about your Dad.  Are they planning to do a neck desection before treatment?  If it is inoperable then they will plan the onslaught of chemo and radiation.   In my case my cancer was discovered through what was to be the removal of a branchial cleft cyst in my left neck.  I had a fine needle biopsy prior to the op and all tests came back negative for malignancy.  So post operative came the knock down news that it was cancer....but the good news it was one node and they got it.  That was December 14, 2016.....I started rad and chemo end of Jan 2017.  I had to wait at least 6 weeks to recover from the neck desection.   I think it is always good to get a second opinion but as Simon pointed out oncologists don't make many mistakes....they do have a plan of attack they follow for HN cancer but saying that every cancer is different.  You need to feel you can trust the plan you are being given for your Dad, and if you feel anxious or disagree you should discuss it with the oncologist.  There will most definately be a logical explanation as to why things are being done in a certain way or time frame. All the best.  ... View more