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 ! 

So week 13 post treatment and still chugging along. My posts can be detailed but again I find personnaly therapeutic and I want to be able to look back and have the milestones as would forget otherwise.

I do feel there has been an improvment this week and although baby steps it's in the right direction this week.
I'm still sleeping a lot but am awake for longer and longer although I have turned night into day a couple of times.
Eating wise, am still on Ensures but not as much and have been trying to experiment a little more. One of the tricks I think is to try smaller portions as I get put off by a big plateful knowing I cant eat it all.
Had stovies/fishcakes/cottage pie as examples and also back on my mini curly wurlys and fruit salad squashy gummys. Have also tried Hazels suggestion of mini jaffa cakes and enjoyed.Hot toasted cinnamon and raisen loaf  and butter/cup of tea now goes down nicely.
It's funny and not sure if others same but I dont seem to have much consistency as I can enjoy say cottage pie one night but few nights later cant touch it. The other thing i am finding is that my mind is actually in the mood of certain foods, I really want to eat them but for some reason I cant. I dont know if its a mental block or otherwise but I dont fully undertand why I cant eat what I know I like and want to eat but can't sometimes physically do..Not sure if making sense but I know what I mean.

Had my PET/CT scan today which ive posted separate detail about and also being doing some work from home and enjoying.Reading a bit more so all in all when I add all these things up I guess that although im still tired and sleep a lot, I do feel some  progress has been made this week and am hoping to build on that. I'm taking this week as positve step in right direction.

I have also been thinking that for anyone reading my blog and I am week 13 post treatment it is perhaps pertinent to say that we are all different and react and recovery will be different for us all. There is no automatic magic number of days or weeks that applies to us all. SuperDave has had a remarkable recovery period and Hazel has done really really well and back on bike quite early on but still has occasitional side effects .I'm probably lagging a bit recovery wise in terms of fatigue and appetite so we all varied.
I went into this treatment just after a bout in hospital after 4 weeks chronic diahorreah and hospitalised for a week and on steroids 3 months (reaction to wrongly prescribed medication).Not entirely fit so I'm sure that may have something to do with my longer recovery period wheres if you are reasonbly fit beforehand there would be a good chance that would stand you in good stead post recovery.
I guess just to point out as I dont want anyone using me as a particular barameter thinking wow 13 weeks and still not as far on as expected.
We are what we are and although I think my mind is overtaking my body, you just have to accept that it is what it is and it will al come back in good time and in your own time and not anyone elses.

So still positive and hoping to get good results from scan  - also aware tha scan is so detailed it can also pick up other things not related to cancer, but pretty much a thorough MOT given.

Meds slighly reduced again this week, left gums still swollen sometimes and Im still drinking then drinking again then drinking some more.

Onwards and Upwards

Ian

Hi Ian 

totally agree on the food side ,there is no rhyme or reason for it . I still amaze my self thatbtoast goes down a treat but bread some days won’t. .re iterating ian s comments some if us are SuperDave made if kryptonite some of us more fragile like glass ,but we will all get here in the end .

i am beginning to think I am reverting back to childhood food what mum used to cook ,stew n dumplings goes down well New foods like pasta and rice noodles nonway they tend to stick. Jelly n custard great  mousse and fancy yoghurts not as easier. Wonder if a study should be done on it a dissertation maybe for some university student.

New treat for this week lotus biscuits found in Tesco a coffee biscuit dipped in milky coffee goes down a treat .

plus manageda few prawn crackers let them melt dipped innsweet  bbq sauce  . Have u ever said u really really want a bag of walkers plain crisps !!!! And a few nuts 

glas you feel like a corner as been turned soeingbus in the air dull days of winter and hospital s receeding in the distance. 

Sure your m o t will be fine. 

Onward and Upward s  glad you have re discovered reading it makes such a difference  will update from Spain after the 3 day journey glutton for punishment i know 

h 

Thanks for encouragement hazel and sure MOT will be fine. Dont have date yet for results and no one really communicates. Will chase on Moday and if nothing else I have a GP appt booked for next Thurs so he might tell me.

I like the way you experiment with different foods to tease out what suits you and what you can digest ok and something I should be doing more.
And crisps and nuts - yes please lol but im afraid to annoy my throat with the crisps and nuts are pretty much a no go area now - I have no back teeth and probably not worth the bother, but I'm partial to crisps but will leave for moment.
As for Spain, nah I think its brilliant you have the enegry to do all you do after what you have been through.Your not just going to spain to lie in sun but your a keen biker and i have always been impressed by that. I'm sure you will find time to relax tho as well as all this travel will take your energy as well.
Enjoy Hazel and will no doubt be in touch soon

Ian

Hi Hazel

Thanks for the reply and positive feedback which is great and no I bet you have no intention of bringing it back :).   I will show him all the comments which will hopefully cheer him up and no he is not on his own in what he has and is going through.

I will read Emma's as well.

Hugs to you both.

Michelle

HI Ian

Thanks and it has been really helpful and reassuring to know that what he is going through is "NORMAL"  if that is the right term to use.

Yes let us know how you get on and keeping everying crossed, partners is now 5th March but is still going down so fingers crossed it might have gone altogether.

Just wanted to say he is also trying all sorts of food had a pasty the other day got it down but had to drink after every mouthful lol but enjoyed it.

thanks again.

Michelle (Gormo)

N

todays tip trydiet Coke the bubbles help the gunk

Hi Michelle I am now known as the pie girl pre cancer never really ate them. But nowthey are a good standby that and cheese  on toast. .any pastry goes down try a warn slice of pork pie strange but the cheaper the meat the easier it goes down any thoughts in a nice lamb chop is a way off (sorry Emma vegetarians forgive me ) 

Yesget him to read the blogs n comments we are a varied bunch. 

Off to get the camera up my nose yippee can’t wait. 

Hazel 

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.

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,
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.