HinLaura

brill news always good to hear .sorry U.K. weather nit good we had 29;degrees on Sunday which is far hotter than normal !

keepmthe updates coming as good news reallynhelps everyine 

h x

Hi all,

Not updated for a wee while so thought i'd pop by and say hi to you all.

Seem to be having a dip past week or so as been losing weight (still)  as not realy been eating. I know I should and know I have to but I just havnt been able to bring myself to. No appetite and no hunger pangs and went quite a few days eating practically nothing aaprt from bit toast and few ensures.
Given myself kick in butt and had cottage pie and little trifle last night but I still find it difficult with appetite and therefore the knock on effect of being tired and sleeping a lot.Still on meds
I seem such a drama but I really wish I could knock myself into shape. Am trying but my recovery period seems to be taking an age. 

Anyways what a damn moan huh as not all doom and gloom and just niggle with usual and just a time thing that will kick in at some point.
Work a little tiring but am off on annual leave for a fortnight so doing a lot of nothing and phaffing with my gadgets and retail therapy for my 60th birthday on 29th March week Friday hint hint  if anyone wants to present me with a new Mercedes S class or a Range Rover lol. Not sure what color.

So my friends, whats the word on the street with yourselves. How are you all doing and what is your latest update at all your various stages. It's nice to see you all update and  see all the progress made and it does help record to show how different we all are in recovery, warts and all.
I know Hazel's still plastering factor 50 in the spanish heat ,running up mountains and training for the Tour de France and I now call her the roadrunner! What an amazing woman.

Be nice to hear from you all.

Onwards and Updards

Ian

Hi Ian

Popped in to say hello to you too.

Sorry to hear you are still losing weight. Well you know what Im going to say, eat a little and often!! Its that or bushtucker. And I know which one I prefer.

PS Will a merc fit through your letter box :-)

xx

Hi clara

thank you and I know....just a bit of blip just now and I have appt with specialist nurse and dieticia/team next Thurs so hope will help.

I hope I find you well and your coping ok. Please keep in touch and let me know of progress.

kind regards

ian

Hi Ian

Happy birthday for tomorrow,hope you manage some birthday cake and have a food a day as yiu can Lowe are in Javea in our mini break met our friends from Australia they have such energy atb78/79 bought a  carvin UK bought a  caravan n ferry here now in Europe for 11 months then will sell car n caravan.

she has breast cancer 20 years ago twice in 5 years so had 30 radiotherapy says omg can’t imagine our mouths taking it !!!!!!! Said tell me about it .

love to you n Fiona 

woukd put ?? Kisses in but woukd take all day lol 60!

Hi Hazel

many thanks for tomorrow and will try and do a little something. I'll accept one kiss as its the thought that counts lol. Might even get a bus pass at somepoint although i'll never use.Not sure what other benefits I get for being an official pensioner from tomorrow apart from cheap haircuts at barber !

Not forgotten re balcony n some other pics and will sort and send in next day or so. Was going to update you private re my medical team meeting today but now will update and share with all on here. I know how you all love my rambling essay updates  so if you are going to read my update in full I suggest you make yourself a cup of tea first lol

So...................

Not been updating for obvious reasons but thought I would do an update a month later from scan news and will also update my blog.
Am still struggling with fatigue and appetite and sleeping far too much and not eating properly.

Had a meeting with specialist nurse and team today and was really productive and given some good advice on how to try and break this as continuing like I am, then nothing will change and nothing will improve.

Specialist nurse there, speech and language and dietician.
Little bit of tough love from them all and I have been set an action plan and have to go back in 2 weeks.
Basically what they said is common sense and I guess it helped to have medical team outline a plan and i'm kinda back in the system again for monitoring.
I was told I had lost far too much weight in such a short space of time and my body is in starvation mode and therefore no energy as not enough fuel going in. Supplement drinks are not the answer and can be little additions but not main source now. Train myslef to get back to normal eating again
So was given daily sheets to fill in breakfast/mid morning/lunch/mid afternoon/dinner/bedtime
Have to write down exactly what i'm eating and when and even how I cope with and how feeling. Small portions often, which I knew.
Medication reduction plan was put in place by specialist nurse and I have an appointment to see speech therapist for scope and swallowing exercises.
Even if I am sleeping, set an alarm and get fuel in body even some toast scambled egg smal portion, just get regular fuel in body!
Work - was told in no uncertain terms - have to go off work again and not to think of a timeframe for return yet. Have to set appoitment with  Occupational health at work and they will put in an official report and a return to work plan when ready again.
All in all came away feeling better and probably needed the boot up behind from them to kick in some practical action. I do listen to my medical team and am good at following plans and bit more fired up now have some structure in place.
It's amazing what forcing someone to write down and log food/water intake etc as I dont want to leave blank and there is no point in lying to them. So have had lunch/mid afternoon snack and light small portion tea today. More than I would have done so Im sure this will work and I'll stick to. The proof in pudding will also be my weigh in.
At GP week Tues and will have bloods taken, thyroid/iron and few other tests and will get  sick line.

They will also organise for me to see dental consultant in around 2 months or so

Part from that I'm fine and dandy and I think even coming off work for a little while longer and not having any work stress will help so took a lot of positive from today.
Again we all different but also shows you can get cases like myself where recovery and side effects take a little longer and can occasionaly need intervention of the specialists. So anyone out there who takes a little longer - its perfectly normal i'm told

So 60th birthday tomorrow and new focus with positive head.

I know thread has been quite but it would be nice if anyone comes on , to give a quick update on your progress. I'm always interested to hear how everyone is doing.
I wish you all well

Onwards and Upwards and to infinity and beyond !

ian

Hi Ian 

glad you got sound advise wont say I told u so !!! Lol

I keptva daily food log aiming for 1900 calories a day marks nnsorncer fruit tea cakes toasted lashings of lurpsck n cheese n grill 490 calories n theybgo down a treat.

Scrambled led egg butter n cream also good so that’s  tomorrow sorted then tea 

good update as usual 

H x

11 weeks post treatment for me, my appetite dipped slightly in the last week but seems ok again although Im eating less than I used to, my weight is 13.5 st, and steady I was around 14.8 st before all this happened, Iv just done my BMI and Im still over weight for my height 6ft and age 60.

I used to snack on crisps nuts and chocolate but they are all difficult to eat without gulps of some kind of drink so I dont bother, my beer belly has gone so its not all bad news . 

12 week post treatment full body PET scan next thursday then results 2 weeks after that, the waiting will do my head in but waiting for various appointments and treatments has become part of life now.

Ole got the job Hazel and well deserved.

Dave

Hi Dave brill news re Ole Ole Ole ,we are having a mini break in javea for 2 nights meeting uo with some Aussie we know. 

Superman your powers need boosting ,try scrambled eggs with butter n cream ,and fish battered. Re be I don’t worry I am 5 ft and 9 st 7 n my  b m i is 25 overweight ! 

Pour tummy’s shrunk during treatment so little n often nit 3 meals a day is the way to go .

off out for a walk catch up soon 

will be thinking if u n scan u will be fine it’s all part if the process 

is it 11 April scan dare ?

love to u n Julie xx

Thanks Hazel i`ll give the scrambled eggs a go, my scan is next thursday on the 4th.

Happy 60th Ian  

Hi all, good to see the thread come alive and mainly with good news. So Happy Birthday Ian, good luck with the plan, it should really boost you,  especially getting off work for a bit. And good luck Dave with the scan and horrid wait. Hazel as ever, a mine of info. I am 5 weeeks post today. All good but continuous neck rash/hives breakouts for 2 weeks no matter the cream. Posssible thyroid cause being looked at as it seems the trigger is vigerous excercise, so taking it easier, and trying not to scratch. Annoying. 

Happy Birthday Ian! Sorry to hear about your setback, hopefully things will soon pick up, sounds like you've got plenty of homework to keep you occupied.

So an update from us - hubbie's treatment finished 17 days ago, chemoradiotherapy - 6 of cisplatin.  Pain has been manageable, starting the swallowing exercises early (week 2) made a huge difference.  The biggest problem has been intractible nausea which thankfully is much reduced now. The anti sickness meds caused constipation which added to the misery. In the end he was on 5 different nausea treatments. Once treatment finished the skin on his neck became quite sore, red and cracked - this seemed to peak before the mouth symptoms peaked but now looks normal. Aveeno cream was good. He's necking the calshakes/fresubins without taking a breath as they are so revolting and this week is trying to get his head around real food, couple of spoons of porridge/ready brek so far.  Taste is shot to pieces, it wouldn't be polite to write his description verbatim but I am sure you know what he means!!  A slight glimmer of hope on odd occasions as long as its not sweet food.  The RIG was used once, for those with worries about having one it hasn't been an issue. 

It is really surprising how different everyone's experiences with this are, if anyone has any advice re improving taste its much appreciated.

Hope everyone getting on ok

best wishes to all

Happy Birthday Ian! Sorry to hear about your setback, hopefully things will soon pick up, sounds like you've got plenty of homework to keep you occupied.

So an update from us - hubbie's treatment finished 17 days ago, chemoradiotherapy - 6 of cisplatin.  Pain has been manageable, starting the swallowing exercises early (week 2) made a huge difference.  The biggest problem has been intractible nausea which thankfully is much reduced now. The anti sickness meds caused constipation which added to the misery. In the end he was on 5 different nausea treatments. Once treatment finished the skin on his neck became quite sore, red and cracked - this seemed to peak before the mouth symptoms peaked but now looks normal. Aveeno cream was good. He's necking the calshakes/fresubins without taking a breath as they are so revolting and this week is trying to get his head around real food, couple of spoons of porridge/ready brek so far.  Taste is shot to pieces, it wouldn't be polite to write his description verbatim but I am sure you know what he means!!  A slight glimmer of hope on odd occasions as long as its not sweet food.  The RIG was used once, for those with worries about having one it hasn't been an issue. 

It is really surprising how different everyone's experiences with this are, if anyone has any advice re improving taste its much appreciated.

Hope everyone getting on ok

best wishes to all

Thanks to all for birthday wishes...wow an official OAP now. Cheap haircuts at barber who and hoo !

And yes, it's nice to see thread come alive again as I like to hear how you are all doing and seems all going well so thats great.
Good luck with scan Dave and rootig for you.and will hopefuylly hear how rest get on with scans when time comes.

J4 - get some Laxido for consipation. It's the best out there and the go to by the GP's as well as its really effective and proven to work.I still take it as morphine causes as well.
Taste buds ..mmmm...I think it's just one of the inevitable side effects. As far as improving I guess its a case of experimenting to what you can enjoy or  more to the point, tolerate. That said you might be ok with something one day and not stomach the next. As you know Ive really struggle with appetite.

As for my action plan, I'm so pleased I went yesterday as feel I now have some structure and discipline to map out improvement in recovery.

Started a sheet yesterday afternoon and have been making sure I log something each mealtime as I have to report back in 2 weeks and in some ways its forcing my hand and no point in lying what my intake is.
So since yesyerday Ive had prawn n pasta salad, choux bun, cheese ham crusty baquette n my gummys n curly wurlies.and basically somethings spread out during days now.
Today I have raspberry apple porridge oats with full fat milk and will prob have in mornings now.
Banana mid morning and just had soft brioche roll with chicken tandoor fillet n mayo and cup tea.
Another choux bun this afternoon and then kids bringing in chinese food tea time for birthday.

I have made appt with work occupational health 12th April so will get some work plan and formal structure in place so its all good and really positive.
Feel much stonger and determined to stick to appetite and medication/work plan and advice and this wouldnt have happened had I not went back to my support team. I had to as the ways things were going, nothing would have changed and I would not have got better as body was in starvation mode and stuck in loop.
I'll update in a few weeks or so and also see where you all in in terms of progress.

Wish you all well and please keep in touch and update with progress.

Onwards & Upwards

Ian

ps: this site needs a spellchecker

Hi Ian.

A very happy birthday to you!!! Welcome to the OAP club. Mind you goverment says were not oap`s till were one foot in the grave.

Pleased to see you had a good experience with your support team you sound very positive may I say :-)

Do enjoy your chinese meal and company this evening you deserve it.

My hospital appt went exceptionally well today. They agreed to no RT!!!:-) Consultant said she was so excited to see me and tell me she had got very good margins so no sign of any cancer remaining. I still cannot believe it. I was so geared up for bad news today. She is very pleased with my healing,also she removed stitches from my neck that were a right pain feels 100 times better.

All in all a good day. xx

Hi Clara 

brill news no radiotherapy glad you fo good news you deserve it. So onward and uowards keep in touch please ,when do you have to go back to see consultant?

bet your daughters are pleased as well

take care

Hazel who is Javea in a mini break ,even my mouth feeels like it’s in the up ,managed to eat all day without copious Water just sips. Weather still good although rain forecast fomSunday then normal service Monday onwards 

hazel sending hugs xx

Hi Hazel in Javea!

Great to hear from you.:-)

I havent had a chance to speak to girls yet. One is at work the other is in hospital having a breast lump removed.

I know Ive not got the all clear Ive to attend for the whole 5yr bit. But it feels like I have been told I`m cured,it was so unexpected.

Consultant offered me to go back to my local hospital,so I said yes. One regret is not having her in future as she very good at her job.

Fingers crossed that your mouth is improving,thats the way it went with hubby we found he neededless & less water as time went by.

Big Hugs back to you xxxx

Hi Clara,

oh wow, thats brilliant...

Im so pleased and great news. What a weight off your mind after all you have been through.

I know you were dreading treatment and potential news so to go into consultant fearing the worst and get this is amazing.
Someone is looking down on you !

Thank you for birthday wishes and I'll be looking on Amazon for my designer zimmer now.
I do feel so positive after yesterday meeting and feel got my mojo back.
Away to have some Chinese shortly with kids n Fiona, but your news has made my day even better.

Onwrads and upwards and to infinity and beyond !

Ian x

Hi ian

new moniker for you Buzz light year

to infinity. And beyond! Yep agree brill news for Clara 

h x

Fantastic news, so pleased for you 

lol Hazel,

have to accept as I pass out names for others 

will try n send some pics later Roadrunner...Lisa made lovely chef cake n will send on to let you see.

Ian x

Jolly good Buzz Lightyear

Glad you have eaten well and Lisa sounds like she has done you proud 

just had tapas meatballs mushrooms with Ibérico ham and patatas bravas was yummy . 

Onward and upward to infinity and beyhond

Roadrunner. Ps agree speed checker deffo needed on this site if only for me !!! Lol look forward to pictures 

Hi all

I hope I find you all well.
Just a quick note to say for anyone interested or who have been following my blog, I have just updated this to include details of further recovery plan put in place this week, with my support team, to try and overcome my continuous appetite and fatigue issues.Its at end blog.

radiotherapythroat.home.blog

Onwards and Upwards
Ian