Hi Laura,

Just seen your post re Micks neck blistering. Poor man I really feel for him.

Hazel aka radioactive raz. Had a bad time with the same. She was given special dressings and praised them highly. Im sure she has named the dressings in her blog.

She is keeping in touch whilst away so she might come along soon to give you some helpfull advice.

I really hope he gets some relief soon  Take care xx

PS Just noticed the lady herself has already been on earlier. I must be half asleep as usual :-)

Hi Laura

The pain really is difficult to manage however if you get the right dressing it can really help with that too. I can see why they gave you flamazine ( Sulfadiazine) but hopefully they gave you some dressings such as allevyn to cover it as this really helps with the pain. Hopefully the burns will heal quickly for him and like others gave said please see if you can increase his pain relief to help. Congratulations again on completing the treatment and good luck.

best wishes 

Emma

Hi Louisabel

I so feel for you and your girls - its such a difficult time for the whole family. My hubby was diagnosed in Dec 2015 and following chemotherapy/ radiotherapy and a neck dissection he has been in remission and cancer free since July 2016. I just wanted to say that how you are feeling is completely normal - its difficult to watch your partner go through such arduous treatment and be powerless to help. However the fatigue and disinterest in life will pass. I really think its the brains way of coping with the treatment- to shut down to anything other than just the basic functions - however as the effects of the radiation leave his body slowly but surely your hubby will reappear as if from hibernation .Hang in there - stay strong - youve got him this far and you will make it through. 

If you need to chat then feel free to send me a friend request and keep letting us know how you’re getting on.

best wishes

Emma aka Newlymarried 

Hi Graeme

Big congratulations on completing your radiotherapy and getting through such arduous treatment. Batton down the hatches for the next 2 weeks - get through the eye of the storm - and the light is shining brightly for you at the end of the tunnel. Keep us posted on how you’re doing and best wishes.

Emma xx 

Hi Louisabel,

Just a quick note to ask if you managed to get hubbys pain under control as been a few days since posted and hope all much better.

Again to reiterate to speak with support team as I'm sure they would re iterate advice given that a few of us have personally been through at that stage. Perhaps also maybe mention the few ensures and nothing else he is taking although I totally understand how difficult appetite is on recovery.
Again both Hazel and myself's blogs detail issues in more detail such as pain medication and also appetite and exercise.
Appetite and fuel intake is a hard and prolonged one for many of us.

As Graeme asked to put handy links on when posting about blog, I have listed link below again should you wish to read  and Hazel's link in there as well.
Really hope a resolution found but please feel free to ask away if I can help further in any way.

radiotherapythroat.home.blog

kind regards
ian

note : Graeme, I hope you dont mind but I've incorporated some of your useful tips you posted into my blog as well as I'm sure will help others.

Hi Clara,

Was interested to read what you posted re hubby taking about a year before back to old self

Was that mainly fatigue and curious as to what side effects lingered on most as year progressed.and what lasted the longest.?
I know we are all different but would be interesting to hear what, in the main, it was that took a year to get back to self.

kind regards
Ian

Hi Ian,

I suppose you would say new old self. A radical neck dissection with muscles removed/split, nerve damage all leave their mark.

As the weeks went by the radiotherapy carried on doing its purpose he felt everything had gone rock hard immovable, movement caused considerable pain. The muscle that the surgeon split,this was a modified operation which I suppose was experimental to hopefully prevent drop shoulder. This partial muscle later became as hard as a bone, this became his achilles restricting movement and severe pain.

During therapy he lost taste, he described taste as everything tasting like wet cardboard. I came across him standing in front of fridge rolling pickled onions in cold ham. I said you should not be eating acidic foods during treatment,he replied I dont care I can taste this.

As he had refused a peg, food was an uphill struggle. What he could eat one day he couldnt the next. But he always tried his best. I used to make mashed potatoes with eggs butter & cream and he always managed to eat this no matter how bad things were. His jaw really tightened up and that never improved either.

His voice was pretty much lost for a long time, this was something that didnt improve too great, he was never able to raise his voice or shout ever again,so that was one more permanent affect.

Mucous was another thing that never really left,it improved but was always there.Nerve damage caused a "stroke effect" on his face,this improved over time but was never 100%.

The fatigue was pretty severe for at least 5 or 6 months. He found this pretty hard to deal with as he was a very agile, fit, workaholic who had never as much as a common cold. I would say pain and fatigue were the most lingering factors for him, and to be honest a measure of depression that comes with it. I would say it was 2yrs before he was really ready to move on.There was no holding him back then, it was as if something changed and his life moved up a few gears. But that 1st year was most definately a lost year. He needed his own time to come back.

One thing I will say as far as pain relief goes all through his treatment and after he was only ever given paracetamol or codiene, I am pleased to see that from what I read on here pain relief is taken much more seriously because without it pain = depression= slow recovery.

As I am about to start the same journey myself this week I hope I have learned even more from yourself, Hazel and others,all amazing people.

Kindest regards xx

Hi Ian,

This was the reason I replied to Louiseabel,no person should have to live with pain like my husband did. It hinders recovery,even in a strong man.

Ian, I am sorry I should have included in my reply that he lost his fight to cancer. He had a rare cancer that was very aggressive and was unlike the usual H&N cancers.

Also at the end he was only having 20mg slow release morphine at night and 10mg in morning with oramorph for break through pain.Nowhere near enough,no palliative care after leaving Beatsons.

As for myself, I was of the mind not to take treatment, but the people on here soon changed my mindset. Although I did have a wobble when my ent consultant told me I was being operated on at Glasgow as our hospital is not equipped for it. I wont know if there is to be a neck dissection untill they do another test prior to surgery, I am hoping there wont be of course,  two days to go so the clock is ticking.

Kind regards xx

Hi Clara,

I'm so sorry to hear of your loss and to add to your pain, the fact you are potentially going to have to go through similar treatment.
I agree with you so much re dose of slow release morphine is nowhere near enough to control that situation and sorry he suffered such pain.

I really feel for you and just hope you get good news over tests and not have to undergo the same treatment.
Please keep posting and us let us know how things progress and I wish you all the very best.

Please send a friend request if you feel I can help in anyway at all.

Kind regards
ian x