Sorry Shane I forgot to mention I only used saline through the neb.....you can mix your own or the rad dept can give you little tubes.  For me it was worth its weight in gold....I had a lot of trouble from around week 3 being able to lay on the rad table with the mask on without choking on mucus!!!  So I would do a neb just before going in for treatment and was able to get through that way.  Dry environments were very irritating too so I actually bought a humidifier for the bedroom at night also helped a lot to keep the mucus broken down and clear.  I still use it until now if I feel dryness in the air.  Dryness is a problem post treatment as saliva is limited so moist air is a winner.   ... View more

HI Guys,   The last time I posted on here I was in last week of treatment!  I thought I'd pop back in to firstly say thank you so much Simon for replying to my desperate posts seeking advice and support, I really appreciated that.  Going forward I finished treatment 26 Feb 2017 so I'm 8 months out and I can say the only thing left as far as side effects is the intermittent sense of taste.  Yes it was a long road and the day I finished treatment I couldn't eat or drink and I stayed like that for three days!  But being stubborn about not wanting to see another hospital bed I road it out and went to bed and stayed there!  You will need support and you will need to find the strength to get through this.  It is a **bleep** hard road but it's doable.  There are wonderful people (like Simon and so many others) that have been there and can share experiences.No matter what anyone said to me nothing could have prepared me for the slow road of recovery.....it was very very slow....and painful! On top of all my Head and neck treatment and surgery I had a spot on my pancreas show up on the pet.  I went in for surgery in May and good news it was a low grade tumor that was fortunately located in the tail so could be removed and requires no further treatment.  I feel truly blessed. Today I feel great....I do see a naturopath regularly to keep my immune system optimal and do what I can with prevention. I had a pet last week and a CT two months ago and I'm all clear!!! I have learnt a lot throughout this all it has been a massive thing in my life. Moving forward (which is something you will do once you recover!) its all about enjoying family and appreciating all the blessings we have!   Shane, I really feel for you if I have understood correctly you will start treatment soon? Yes the nebuliser REALLLLLLLY helped with the mucus that builds up once radiation damage begins.  I actually borrowed one from rad department and I kept using it for around a month after treatment ended.  Steam helps to break it down and allow you to breath.  As Simon mentions in earlier posts it does get to a point where there is a constant build up of mucus no matter how much you clear it, it just comes back.  It's the body reacting to the damage there.  The week or so after treatment I slept in an upright position and woke during the night a few times to use the nebuliser.  Showers help too but once the burns come out towards end of treatment showers get difficult.  With nutrition everyone will have there own individual path with it.  I know Simon had the peg and absolutely needed it.  I didn't and pushed my way through without it....but my treatment was slightly different to Simon he had three chemo I only had one.  You will be guided by your oncologist and dietian about that.  But I was adamont from teh beiginning not to have a peg, at one stage it looked like I needed nasal feeding but I was able to avoid it and push through.  That being said I have lost to date 30kg!!!  But that is not all atributed to rad I also had the op on the pancreas and that set me back a bit nutrition wise too as I couldn't manage much after that.  Until now my meals are not big but I have apetite am able to eat, drink and am pretty much (although things will never be as they were pretreatment its a "new normal") back to normal! Simon, I was very happy to read you got an all clear!!!!!.....how good is that!!!! best news ever!!!  Go live life and enjoy your beautiful family!  Cancer survivors high five!! Please Shane if you have any qs or need any advise etc....please pop back in and let us know how you are getting on.  The posts from Simon on here helped me greatly!   ... View more

Two days to go and counting the seconds.   Thanks for the insights Simon, yes somehow I am still managing to get sustagen down (24 scoops over 4 litres), it is hard but I use the difflam to numb the mouth and throat then go for it.  But I absolutely hear you about getting a nasal feeding tube if needed, as soon as I can't manage this then there will be no other option.  At this stage the Dr and deitician have said to put a pewg now this late in treatment is not necessary as any escalation would require a more temporary measure. And it wouldn'd bother me either to have the nasal feeding tube, looks are not a priority for me right now.   I like you analogy with giving birth....so true we forget, but how do you have such insight as a man?  I really really really can't wait for this peak of pain and burn to be over.  I feel completely exhausted physically, mentally and emotionally.   When you say you still have the mucositis to what degree is it?  Two months out of treatment is a long time to live with such a horrible side effect.  How about your taste anything coming back yet?   A tip for the sustagen or smoothies put ice in them....it really soothes the throat.   Nearly there....well for the treatment part of this unwanted journey.   😞   ... View more

That's great to hear Simon.   The fortsip drinks are palatable, but I know taste can be a very individual thing...did you try different flavours?  Chocoloate or vanilla?  I totally agree with you about sustagen I find it palatable and very easy to get down.  In week 3 I started how you are ending now using sustagen as base for mixing in other ingredients.  You can get the fozen fruits like mango, berries etc and blend them in too...they taste great, soothe the throat and offer a bit of variety on what is a very very limited diet.   Can you talk to your dietician about getting the sustagen from them?  I was gettting it reduced at the hospital pharmacy but once other options of nutrition were eliminated my dietician said they will provide it for me.  It is worth asking about.....You may need to be drinking it for a bit it can get really expensive.  ... View more

Good news Simon.....hopefully you will return to solid food soon. How are you managing those awful peg feeding packs?....I was offered them to take orally and they taste vile! April ... View more

HI Simon,   Me again....:(   5 weeks completed with my last week beginning tomorrow 5 rads left and I'm done.   So the mucositis has set in!....I had no idea that what you were referring to was thick disgusting yellow mucos!  I thought it was just the thick phlegm/saliva in the mouth.  Sustagen is getting harder to get down due to it as it is a milk based drink.  I need to put down 4 litres a day to meet the requirements and I tell you I'm struggling on with it each day.  On Friday my Dr menioned the nasal feeding tube just wanting "put that out there" as an option if things get too hard.  Each day my main concern is just getting enough nutrition down to continue mouth feeding.  How much did your sore throat ramp up week 6?...I'm thinking at this stage it is on the edge of manageable any further and it could tip over the edge and I won't be able to do it.  I am numbing my mouth and throat with Difflam then getting the drinks down.  In between swallowing and taking my 4 hourly panadol is really painful.  I'm on a fentanoyl patch with slow release morphine just at the lowest level so I still have room to ramp that up if needed.  My neck is not too bad but it is red, but not breaking down yet.  My chest area however is red and beginning to break down...I don't know why they radiate so low down.  Even the Dr was surprised and thinks it maybe a reaction rather than directly from radiation side effects.   This is such a hard road.  Some days I'm like I just can't go on.  Especially tomorrow.  It will be so hard to go there another 5 days for the last of the destruction when I am almost at my end now with everything.  I read back over what you write about post treatment and I am beginning to lose patience.   Sigh. April   ... View more

What a journey Simon.  7 weeks rd and 3 chemo.....here I am whining about 6 weeks of rad and 1 chemo.  You are a one strong person.   Chemo tore me apart.....I just can't imagine how I would have faced 3 doses.  Especially the cisplatin....I got the carboplatin due to my concerns about hearing lose.  They said the nausea isn't as bad too with the carboplatin but even still I went down with it.  The extent of your side effects were surely influenced by the chemo to a greater or lesser degree.     Today was a big day.  I had a PET scan post op back in December and nothing lit up in my neck but a small spot on my pancreas lit up.  Today I had an appointment with the surgical dept about it.....it's a whole other ball game for me.  I have to do an MRI so they can characterise it either cancer or not.  The whole thing has destroyed the fight I had facing the rad each day.    I've got the MRI on 9 March....from there they will decide, the first line of attack will be surgery if it is cancer.  Something I really don't think I can face.   Trying to take one day at a time ATM is hard.  Have you had any experience with PET scan?  I've done a bit a search and apparently they are famous for lighting up for no reason.       ... View more

HI there,   You have had chemo and 6 weeks of radiation.....You have age on your side Simon, stay positive.  Your little ones are close together age wise, so you guys have your hands full!  What do they know about what is going on with you?  Just Dad's been sick?  The 8 year old may understand more.  I have an 8 year old too, she knows I'm sick but the full scope of the "c" word she hasn't been exposed to yet.  My older boys (13 and 15) we spoke to and they understand more, which is harder.   Looks like the redness is beginning, it feels so itchy I could scratch it raw!  I've got some cream mixed with local aneasetic to put on it.  It is reassuring to know the burns heal quickly, I've seen some of the other patients with some really really burnt skin.     Did your tinnitus go away?  I had mild tinnitus before all this but it has gradually become worse with each rad.  I really hope that subsides some days it drives me nuts!   Had a look in my mouth today.....what a sight!  I don't know how I am still getting liquids down I really don't.  We shall see for how much longer....each day the back of the mouth and the throat just ramps up a bit pain wise.     Thanks for your insights into post rad I have definately taken them all on board.....much to my disapppointment.  I am glad you told me though there is nothing worse than stting yourself up for a fall.  At least the travelling to the hospital every day will be over and facing the mask and the treatment will be over....its one small positive amongst so much crap!   Did you lose your voice at all?  I feel my voice getting sorer and sorer each day.  I am trying my best to preserve it which is very hard with four kids!....:)   Have you tried natural mineral water to break down the phlegm?  I started it this week and have found it really effective, it just moves it down and away.  I also use a nebuliser that also helps to break things down in the throat.  I use it before treatments and also at home when I feel there is too much of a build up.   You said you still have a sore throat until now.....has it improved since finishing treatment?  Are you managing to actually eat anything yet?  Or drink something?   Yes I was on quite a lot of vitamins pre op....but I was told to stop them all for treatment (the Drs).  Apparently they can interfere with chemo.  Now that I am not having anymore chemo I will check again if I can continue them.  Just immune system building stuff, Vit C, tummeric, etc etc.  I will check though thanks its a good idea to get on to a multi vit at least.   Hopefully by the time you go back for your scan in march you will have made a good recovery Simon.  Hoping that you get good news and can put this all behind you as one of life's tests. April  ... View more

BTW Simon how old are your kids?.... ... View more

HI Simon, thanks again for the insights.   Today at weight in I dropped another 1 and half kilo since last week.....BTW I started with extra weight so that is a plus.  The dietitian saw me today and is monitoring me closely giving me new ideas about how to get more protein in.  I am able to get water down and till now have no problems with hydration, I have actually gone on to natural mineral water and its working wonders in breaking up the phlegm hanging around my thoat.  I made a plain lentil soup without my usual spices onions and garlic (which I can no longer tolerate), I added in some zucinni and carrots pureed it all and I managed to get two large cups down....very very slowly!   Thanks for the tips on the peg....I really really don't want another op right now....I know I maybe in a situation where it is unavoidable but I really want to do the best I can with a liquid diet and keep up my fluids as long as i can.  Things are definately escalating no doubt....this week and the coming will be decisive.  I can only give it my best shot what more can I do...whatever happens happens.   The obstcale for you right now as far as drinking and liquid diet is still the soreness in the throat?  When you talk about taking meds post treatment I am like NOOOO!....I am so looking forward to gettng these 30 rads over and behind me like life begins after.  From what you are saying things are still on a downward slope post treatment.  Of course I am not expecting to be leaping tall buildings a day out but shouldn't the healing and recovery start once rad stops?   ATM I do get the feeling of hunger....like I feel like eating...well drinking something.  I found frequent small drinks of soup or sustagen is working.  The problem those quantities that I am getting in are getting smaller.  This is what the dietitian enphasised today....but I was like...I just can't.  So I hear her but I know what I can do and what I can manage.  I use her for ideas on how to get better quality drinks in.....she knows my views on peg and is really trying her best to work with me to achieve that.  I really hope I can.....but its not the end of the world if I can't.   You must have a high pain threshold!....wow...I ditched the morphine and spoke to the Dr today about panedine forte...he is happy to try that.  Your suggestion of nuerofen is a good one....but isn't it aspirin based?...it thins the blood?  I will check that one out though and see....I need a plan of action in hand so if the pain ramps up I have something.   Yea I hear you about maintaining weight....the dietitian said the same to me she doesn't want to see any weight lose....I was like well I've got it to lose it so what 's the problem.  She said in treatment maintaining weight helps recovery.  Although I think we are far better positioned than very underweight or average weight people are...so I absolutely agree with you.  Its all about hydration and protein....that's what I am keeping tabs on.   When did you start to experience the redness and skin problems?  I am pretty anxious about that...I am pretty fair skinned and don't see alot of sun so I am  a bit worried about that aspect of the side effects.  I know everyone is different but its always good to get a heads up.   April    ... View more