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 ! 

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 

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.

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 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

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