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 Hazel

Sorry for late replies still finding replies :).   thanks for dizzy and tingling a few people have said that which is good to know.

He's the same never fel the cold but layers and layers and the heating on all the time but had been told that so wasnt a shock.

We have booked Spain in June!

Hi  gomformit something to look forward to. We went in October form18 days it wasn’t hard ,hardest paetbwas leaving the security bubble of home. But u will be fine , if hubby nit eating properly get drs to prescribe powder supplements to take. Plu sthe pharmacy’s there sell powdered Ensure enough for a week was €35 .the bread shops do a decent cheese n ham crossaint !!!!!

re the cold dreading gas bill lol

just hopingbthat u can stand the heat in spain as I’ve also heard it  can work the ithee way n I’ve never been good I’d too hot know sun bathing is out and factor 50 is in but hoping we don’t have to give uo our rental apartment and end uo in Wales in a static whi is plan  b ,okmi know we are lucky but don’t want cancer  to take  the options away 

h 

h 

Defo something to look forward to and I will keep them in mind lol but hoping he will be eating a lot more and enjoying it !!  I know as he loves the sun but keep saying he will have to do factor 50.

That would be a shame if you do but fingers crossed just staying in the shade and wearing a hat might be enough but nothing wrong with Wales :).

No defo dont want it to take anymore away.

Just had my 6 week post treatment check up and it went really well, doc looked in my mouth and had a really good feel around my neck for lumps, loads of questions about taste, eating etc but happy with me and said I had coped really well with the radiotherapy. No need to look up my nose with the camera so it must have gone well! Im completley off any meds now too.

Next stop is the 12 week post scan then the results appointment 2 weeks after that which is 18th April and is my 61st Birthday...guess what I want this year? 

Julie says hello Hazel she is fine and will be even better when we can book a holiday :)

Hope everyone is ok

Dave

That's great news and fingers crossed you get what you want for your birthday :). 

tony didnt have the camera at his check up thank god as he hated it said it was awful.

Take care

Michelle

Hi everyone just bsck consultation went well no camera as he could see n feel what he wanted to. Wants check ups every 6 weeks in first year but agreed that this trip would be ok as long as if I felt ill come home which I agreed to. 

So all good pleased with me 

h x 

Great stuff Hazel and even more reassuring.

Now go and enjoy your trip

ps: agree re gas bill. my heating been on constant as more or less in house all time so expecting a steep one as well.Need to keep warm tho.

ian

Hi Ian will do, yep not looking forward to direct debits increase  ouch I turn it up,John turns it down! 

Forgot tomsay although no camera consultant put a gauze on my tongue so he could pull it a bit without his fingers slipping omg I nearly gagged then he wanted me tomsay eeeeeee not a chance u hold your tongue out n try and say it it’s impossible !!!! Pleased no camera though

onward and upward , hope your heatwave helps with heating over weekend

keep in touch let us know ASAP when u get results ,will keep everything crossed 

h 

Hi Hazel

wow with you saying eeeee, that has just trigged in my mind I had an appointment with Speech and Language. I do  - this Monday at 12.00 noon !!
Never had the gauze before and doesnt sound too comfortable so maybe something else I have to look forward to.

I completely forgot all about appoinetment and its only thanks to you that I would not have shown up so thank you.
To be honest, I have long weekend booked for annual leave and no work etc and may well postpone until after I get results.Seems an ever ending list of appointment schedules.

We can also maybe start a gofundmegasbill# and split it between us lol

and yup Onwards and Upwards for us all and will defo let you know results no matter what outcome.

ian 

Hi Hazel

wow with you saying eeeee, that has just trigged in my mind I had an appointment with Speech and Language. I do  - this Monday at 12.00 noon !!
Never had the gauze before and doesnt sound too comfortable so maybe something else I have to look forward to.

I completely forgot all about appoinetment and its only thanks to you that I would not have shown up so thank you.
To be honest, I have long weekend booked for annual leave and no work etc and may well postpone until after I get results.Seems an ever ending list of appointment schedules.

We can also maybe start a gofundmegasbill# and split it between us lol

and yup Onwards and Upwards for us all and will defo let you know results no matter what outcome.

ian 

Thank you everyone for your updates, they're always interesting to read. My partner finished his radiotherapy last Friday. He still eats very little, this used to be due to the vile taste, but now because of the pain. But I'm really impressed that he's only taking 4 paracetamol a day, nothing else. He's having 3-4 ensures a day into his PEG tube. He's still very inactive and isn't talking much, and his spirits have been low for most of the treatment (chemo was awful for him, they stopped this after week 4). Next week our girls go back to school (primary school age). Hopefully the weather is nice. I'll continue collecting them from school but I'll suggest to my partner that he leaves about 20 min after me and to meet us on our way back, I'm not even sure he can walk all the way to school now, he looks so frail (it's a brisk 10 minute walk). He used to do most school runs and my girls are really missing those. They're looking forward to him playing again (Lego, taking them to park etc). I'm looking forward to being able to have a proper conversation. It's like having a stranger in the house and my girls have found it very hard (he was always a very hands-on dad who did loads around the house!).

Keep on posting!! 

Hi Louisabel.

I was where you are when my husband had his treatment. You will find patience you never knew you had. As you will have read the treatment goes on long after completion.

My hubby sat in front of a tv but could not tell you what programme was on. I would say everyone is different but in his case it was about a year before he got back to his old self.

Do you think his pain is properly addressed with 4x paracetamol if pain is affecting his ability to eat?

This is great place to find hints and advice. There is always folks come along if you need a bit of a chat or whatever.

Kind regards xx

Hi Louisabel,
On one hand its good that radiotherapy is now over but I'm afraid in most cases this is where the side effects are most challenging while on recovery phase.
I totally agree with Clara for rasing the fact only on 4 paracetamol. It's not a case of being impressed but making sure that appropriate painkillers are taken to control the pain. As he cant eat because of the pain I would suggest he is not getting the painkillers required into his system.
Painkillers are there for a reason and no one should be in pain, with or without eating when there is a solution to control it, but only my opinion.
I would really advise you to speak to his support team/GP and let them know what he is taking and I'm sure they will advise accordingly, especially as you desribe such pain.(It was at this stage I needed morphine the most).

On exercise we are all different and while there are a few who have managed to exercise quite soon after radiotherapy just stopped,some, like myself, did not have the energy to go out walking much.
We are all different and we all need our own personal recovery time no matter how long it takes.My consultant told me it can potentially take a year or so for bodies to fully recover and get back to way they were before treatment,

Hope this helps and blogs from myself and Hazel,cover post treatment / medications etc at various stages and based on our personal experiences.

Link my blog again is below and also contnis a link to Hazel's

radiotherapythroat.home.blog

regards
ian

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