Hi Laura,

Thank you and sorry Micks side effects ramped up. Although temporary it doesnt make it any easier at the time and wish him well and I hope you are coping and doing ok as well.

Hope Mick has a good week and keep us posted.

Ian

Hi Ian. Good luck for tomorrow,I am sure all will be absolutely fine,let us know when results  are in . I had a 10 day wait hopefully yours will be quicker 

hazel who is  getting ready for road trip ,taking 96 ensures with us in then car just in case. Lol bush tucker trials on the beach ! 

Hi

My partner was the same both with the taste but also the pain was so intense and unbearable so didnt eat for about 6weeks and just had 8 bottles into his NG tube ( he lost that much weight his dietician advised she wanted him in hospital and he stayed in for two weeks after his radio finished. 

I agree about the medication maybe ask about morphine (mine was on patches for months along with oral morphine and paracetamol) .

He is still very tired but managing walks and little trips out but this week he has done nothing due to the fact he was out and about last week.  So he is just listening to his body and also everyone is saying about 12 to 18 months before he will be back to his normal sefl.

Hi Louisa bel 4 paracetamol is nit sought atbthis stage please see someone about pain relief the clue is in the name pain killers inwas in oramorph and 30 mg co codomol for 5 months almost inweaned my self gradually offvthem with no side effects please please see someone 

detail s in my blog www.radioactiveraz.wordpress.com

h 

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 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 Clara,

Thank you so much for your detailed  reply and really helpful and interesting insight.

Am also sorry to hear of, as there does not seem to be any boundries to treatment in this area and the side efects that it brings.
I can resonate how you mention depression a factor as your husband coming from a very agile fit workaholic to having to cope with quite severe debilating side effects would test us all.

I'm really quite shocked to hear that he only had paracetamol/codine to help cope with the pain, especially when I put into context the amount and dosage of morphine I was given to help.I'm actually still on morphine week 13 post treatment albeit on a reduced level but still encouraged to take by team. It seems so unfair and unecessary that he had to have to suffer such pain with when there are potential solutions to at least help so much and would certainly hope the appropriate pain relief support is afforded to you as appropriate.
I'm also really pleased to hear he has now moved on considerably and really wish him all the very best.

My heart goes out you that in addition that you find yourself about to start the same journey this week.
I wish you nothing but the very best and hope you have all the luck in the world with your treatment all the side effects that it brings are kept to a minimum. 
Please do keep posting on how you progress and let me know if I can help further in anyway whatsoever.

Kind regards

Ian x

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
 

Hello again Ian,

It has pehaps given you an insight as to why I feel so strongly about pain management during/after treatment.

I avoided mentioning husband as I feel this thread is more about fighting this beast of a disease and finding the best roads to recovery.

I have`nt come across anyone still having diagnostic tests right up to day before surgery. I am having lymphoscintigraphy, as ent consultant said to "try" to find the sentinal nodes. This involves 4 injections of a radioactive material around the tumour it should then flow to the sentinal node/s. They can then biospy them. I hope the bed/trolley is comfy as it can take hours :-) I should take comfort in that Glasgow Dept of Neurosciences is very highly regarded as the best in Scotland.

I will keep you posted how it all goes.

Kind regards x

Hello again Ian,

It has pehaps given you an insight as to why I feel so strongly about pain management during/after treatment.

I avoided mentioning husband as I feel this thread is more about fighting this beast of a disease and finding the best roads to recovery.

I have`nt come across anyone still having diagnostic tests right up to day before surgery. I am having lymphoscintigraphy, as ent consultant said to "try" to find the sentinal nodes. This involves 4 injections of a radioactive material around the tumour it should then flow to the sentinal node/s. They can then biospy them. I hope the bed/trolley is comfy as it can take hours :-) I should take comfort in that Glasgow Dept of Neurosciences is very highly regarded as the best in Scotland.

I will keep you posted how it all goes.

Kind regards x

Hi Clara,

Please do keep me posted.
You are a remarkable woman, selfless, and courageous.Seems such a cruel twist of fate that you also find yourself in this situation. I know what you say re purpose of this thread, but your experiences helps us all understand further the lack of boundries this disease has. and we are also here for you in anyway which way we can to help. Whether it be sharing experienes or just being able to chat to others who undertstand some of the issues.

Lets hope all goes well and as you say it is some comfort being in the hands of such expertise.
Will hear from you soon.

kind regards
Ian x.

Hi Everyone

i certainly echo everyone s comments to Clara keep strong and please keep us updated. .

arrived at apartment this afternoon , ferry journey was hard but did it. Food was difficult as fish in menu but heavily breadcrumbed and can do most stuff but breadcrumbs nope .john had lamb my favourite sorry Emma I pinched a bit and sat there salivating well I woukd if I had saliva it tasted like heaven mashed potatoes fine and lemon meringue tart. Also managed a full English but in Sunday was too tired in pain mouth to drive so left that to John hotel overnight and woke in bettercstate and did a 2 hour stretch on motorway which is the furthest I’ve driven since diagnosis last June. 

Sunny here jihn says warm but u feel cool factor 50 on the neck

will keep in touch hope everyone is getting there

h x 

Hi Hazel,

Glad you got to your destination quite a mammoth drive!

Meeting up with friends on here for a meal, that was so nice to read :-)

Now a word of warning!!! you are in danger of becoming a worse foodie than me. That bikini wont fit for long, you have been warned HaHa You know me I cant resist injecting a bit humour :-)

Have a great time and look after yourself (hubby too) xx

Hi Clara

yep it was a mammoth journey which normally we do twice a year with ease but was difficult this year but I did it. 

Was great to meet up with Nikki and Paul then Emma and Paul we had shared such intimacy without speaking just texting was brill to hug n chat. We got in so well that are hoping to do a long weekend in summer if we can all manage it. 

I exposed bidyvwhen I was 2 stone heavier than I am now so if need be will do it again Bith jihn n I believe in growing old disgracefully lol. 

Please keep in touch 

h x

May i add my support Clara, im sure the people on this site, and indeed this thread of Ian's will be of great use to you. best wishes.