Hi Ian, im same neckline and bit higher as my rays are coming from behind to protect voice, but im losing it now, very hit n miss croaky, i wonder if im gargling mouthwash too far back,will ask consultant, although the usual "every one is different" may be their answer as i have seen others get it, hopefully temporary. I sing and play guitar for a living so they were at pains to convince me they would not go near larynx . Some rays inevitably will so hopefully temporary, no panicking over it.The secretions have started, come and go but jeez, vile at times!

Hi Louise 

Sorry to hear your hubby is struggling with the ensures and you are understandably concerned of his weight loss. My hubby also struggled with having the high protein drinks as a bolus as they made him even more nauseas than he already was. We trued ensuring he was well sat up and ensuring they were warmed slightly- like a babies feed- to prevent the cokd feeling hitting his stomach as I administered them. In the end we went for a feed pump which slowly infused the feed over 12 hours and so made it easier to absorb and reduce the nausea slightly. It may be worth mentioning it to your dietician. 

The horrible taste is much more difficult to manage and by the end my hubby could manage only very tiny sips of Evian water - like Hazel he us now a water connoisseur! And everything tasted terrible - not that he could really taste anything at all ! 

Wishing you loads of luck and just to say that it us 3 years on the 8th Feb since my hubby began his treatment and today he can eat and drink nk normally - runs 4 miles most days and aoart from a dropped shoulder after his neck dissection is living life to the full. Hang in there and you will get through this tough time.

Emma- aka Newlymarried 

Emma just like to say i have read you and your husband's journey, courageous and determined people.

Hi TFS

thank you so much for your kind words- we just try our best to use our experience to help others if we can and live our lives to the full. Paul did loose his hair at the back for about 10cm above his neck line and even now his whiskers are patchy in places. His voice was croaky and although he was never a fantastic singer his vocal range is diminished.

Wishing you all the best as you travel this difficult road 

best wishes

Emma 

Laura

what kind of painkillers is Mick on?

Is he on morphine and what dose. I had my dosage upped quite a bit from around week3 if I rememeber.

40mg morphine tablets in mornig and 40mg tablets at night plus oralmorph to top up as and when needed.
If on morphine I would suggest you speak to team re pain as they should be able to assess what is needed to avoid pain and maybe something else in addition for the sore on roof of mouth.

Ian

The roof of my mouth was pretty bad too for a few weeks I was using liquid Paracetamol and Oramorph although I didn’t use the Oramorph unless I really had to as it made me constipated. I think the Bicarb and salt water mouthwashes really helped me through the worst of it though.

Im really coming on fast now and eating well again I just don’t want to put the stone back on that I lost.

Dave

Hi Laura 

i had a radiation’ burn full length of my tongue was prescribed gelclair by oncologist unfortunately didn’t work for me but know many who it did. Also there is an oral suspension with lanocaine that u take 20 mins befire food n it numbs the burn to enable liquid to be swallowied. Use the peg that’s why it’s out in around micks timecwas when I became reliant on feeding tube for 45 days it kept me alive. 

Goid luck 

keep in touch 

hazel xx

Hello to all and myself

End of week 11 and wish could say i'm dancing and running up stairs but i'm afraid fatigue still looms.

Probably slightly better but not much and still sleeping a lot, even during day.
Been bit more active and one day in office/ appt with consultant/ GP's and shopping and working around 4/5 hrs a day which although mental can be a little tiring.
Food wise im still on the Ensures and using up to 6 a day still as food hit and miss still.
Occasional very small meal but have started to enjoy hot buttered toast, raspberry jam and cup of tea.
its the little things that make you happy huh lol.Also Volvic "touch of fruit water" from Tesco really nice, lots flavours eg Watermelon,Lemon Lime, Summer Fruits etc and nice change from plain water.

Had consultant appointment who seemed pleased with progress and has now ordered a PET scan and should be in around 2/3 weeks time. Was also told not to be alarmed as very often false positives show up and 40% of his patients end up going for further tests if shows up elsewhere in body etc..I'm hoping to be in the 60% bracket.

Fatigue , he told me was quite normal and said he told me at the start that this is serious treatment and can take up to 6 months/ a year to get fully back to normal.
Scope down and he was happy enough with that and said everything was looking good, but lets see what the PET scan results are.

Medication wise told him and my GP that I had halved Morphine etc and was looking to cut further thinking they would both be pleased. Both had a simliar reaction in that I shouldnt be too quick to totally cut off and halfing a bit too much just now and to do more gradual approach.

That apart still in good spirits, reading more, which i enjoy so much and combined with work and gadgets feeling ok. Bit of pressure from work to up the game as they dont understand but GP is equally adamant and happy that if I'm stuggling at all, then he will sign me off for a further total recovery period.
Guess overall just re iterated again by consultant and GP that slowely slowely is the recovery for me and there is absolutaly nothing more that I can do about it and continue to do what i'm doing and sit it out.

Have started a proper blog and am looking to pull together my journey in a little more stuctured manner and have internet addy etc but will take time and do properly but that has kicked in a little incentive for me albeit im in no rush at all to finish.

Hope you are all doing fine whatever stage you are at.

Ian

IIHi Ian

welcome to the slowly slowly club 23 weeks post radiotherapy today for me and yesterday’s I knew I hadn’t overdone night it. We flew home yesterday 11 am from Murcia Home for 1500 but OMG was shattered . Even I couldnt eat  last night really shouldn’t have had a couples of bush tucker trial ensures  note to self still in recovery. 

Re medication yep slowly again is the way to to go it’s hard but I now only take  paracetamol when I need it. 

Biking wise in 18 days away managed 152 km and a few km walking most days but I don’t have the energy kevals that my brain thinks it has. 

I do wish the hospitals wouldn’t warn us a but more of the length of recovery. OknDave we know u are flying and well done to you ! But us mere mortals are a bit slower. Lol

Anyway Ian like me niw reading has come back to you it isn’t much easier inwas thinking the other day what on Earth was I doing in the early weeks. !!!! We know you were internet shopping !!!!!.

Good luckmwith writing  blog together I really read mine  the other day ,pretty scary what we  have experience  been through !!!!!

please let me have your link and will put it on mine I am like you the more choice people have the better they can cope with the treatments.

anyway back in U.K. for 2 weeks hard life I know ,butbseeing as last year from may onwards  was a right off I don’t count daily trips to Leeds a holiday ! Going to make it crack while I can 

you will be fine new with your scan is it a pet ct one ? here is an incidence of hot spots  showing up from  memeory will re do it again inn 3 months but you will be fine  I can feel it in my old bones !!!!

re work they can  wait it’s hard for anyone but us to know what’s happening. even John sometimes looks at me when I say nap time he thinks I am skiff g out of washing up!

take care

hazelnx