Another vote for the RIG/PEG route, others will tell you I was so anti (mainly scared) about getting it fitted, so much so I tried many private hospitals to see if I could get it done private under a general. Without any success I decided to get it done at NHS, so glad I did, I remember nothing about procedure followed by few days of being uncomfortable. Its now part of me and my insurance policy, I already use it for water and some of the things that taste really bad (laxedo) and will probably use it for food in the next couple of weeks (only on week two of treatment) i have a PEG so dont need the feed pump just put it in syringe and sqoosh it down, takes seconds.  I just need them to sort out my nausia so I can keep it all down...good luck and I know how it is, there always seems to be a little sting in the tail when they tell you something or rather dont tell you something...

Hi all

So a follow up with my medical support team yesterday and a little more insight on my next steps.

As I have been religously following my action plan, I have managed to put on a little weight which pleased them. Their whole objective was to have me put on a little weight then have stabalised then a controlled weight loss. My partner did raise concerns eating so much fatty foods/creams/butter and maybe solving one problem but creating another.
So anyhoo, now they feel less concerned with appetite and have seen that I can gain weight and the fact swallowing is functioning ok, I am now to slowely revert to a more healthy regime and a more balanced diet. I still have to take the complan supplements for at least another month, but now more fruit and to introduce a little more healthly meals and more balanced. I have to cut out the **** in my diet  and out go crisps/choc pretzels and my beloved mini curly wurlys etc.Darn it !
Heads spinning a bit from told eat as much fatty and whatever you like ( even fish supper for breakfast if I wanted)  to being told now, ok thats fine, job done, back to more balanced healthy.. Just when I was starting to enjoy fish suppers/crisps gummy sweets etc. Well I'll do as I'm told once I finished my stash of pringles and M&S tottilla chips and my bags of curly wurlys.
I mentioned muscle loss as well and was told all the weight loss would not just be fat and in addition to all my inactivity my body composition will be breaking down muscles as well and will indeed have lost quite a bit of muscle and strength,
I have to start gentle walks and introduce some more exercise into plan now. They have a programm called Move too and I'm being referred to that as they can tailor an exercise plan sppecifically to help me as well as monitor progress and weight. 
Sleep still fragmented, but again referred to the quote of up to 2 years before potentially back to full new normal. Told to cut meds down slightly if I can do as I personally feel that contributes to fatigue so that should be another component to help.
Appointment in to see dental consultant in June and I have oncologist consultant next Tuesday for my regular MOT.
Also full set of bloods taken to check thyroid/iron etc from Gp this week.

All in all I feel lot progress made and the medical team have helped so much and although still a little to go re fatigue feel slowely improving. Off work until 30th May then have to have a long phased return to work and was also supported by Occupational Health work consultant.
I have had tremendous support from so many of the medical team and they all work together as a team bringing all the different components together and they even make a positive mental difference.
Back seeing them again at the end of the month to check on progress so they are keeping a good eye on me and monitoring closely.
So i guess its really helped me understand more about the type of foods we take and when to take rich fatty foods and pile on calories to then when to call halt a little and start to introduce a more balanced healthier type of fuel but ensuring nutritional value as well as taking complan shakes for quick energy bursts.

Just a further supplement to previous post re good and wasted calories and now little explantion from them how body composition changes and muscles are being broken down as well as fat as my body looks for glucose and energey from anywhere it can get it and its all tied in. 
Fatigue was put down to purely radiotherapy treatment still residual even after all this time so was told just have to learn to accept it and part and parcel, but now time to start more exercise.

All good, all positive and another step forward.

Hope this update helps at least one person and i know Graeme for example, you were having a little issue with weight and muscle loss, so hope that is getting back to normal as well. I guess overall message that once stabalised, is to have a sensible  balanced diet but accept we might occationally need a short sharp intake of fatty calories to help heal bodies

Wish everyone well no matter where you are on your journey and I'll maybe do a further update nearer end June when I will have at least started doing some work and also see what my dental consultant has to say about my gums.

Onwards & Upwards
Ian

Been awaiting your update Ian PM  sent, best wishes and thanks.

Hi Ian clear and consise  as usual thank you for your updates am sure will help lots of people along the way. Good luck with exercise slowly slowly Buzz don’t zoom up to outer space just yet !!! 

Mad you know Jojn has been a bit of a slave driver with me   Cheeky the other day he said thought I would have walked more while over on Spain. 

Umm 619 km biked

300 km walked and 2 mountains climbed I retorted bsck was enough. Lol.

ih well no hardship that I can’t eat crisps or tortillas then so no wasted calories there but my 2 squares if dark chocolate are staying plus my 2 Cadbury’s chocolate eclairs !! Lol 

fish n Chips  once a week still struggling with salads but at least veg go down xx

Good luck and look forward to updates. 

Hazel aka roadrunner. Onward and upwards. 

Graeme and Hazel - thanks and also replied to PM for both.

hazel

I think you have done amazing with your exercise and really inspiring what you have managed to achieve after treatement. I think you are something to aspire to and I'm the one not to regarding exercise and fatigue. We are like the before and after twins lol and we all want to be like you and the roadrunner.

Thats a lot for anyone even without the treatment so you deserve a massive pat on the back for achieving that much and also having the positive can do it attitude to go with it.

Tip - Nip John when he is sleeping to get your own back lol....I have woken up with an unexplained bruise before now !

I'll do as I'm told from Monday ( need to get rid of my stash ) and see how I get on with eating/exercise/fatigue/work/dental etc and will probably update again around the end June and see how this creaking old body bears up. Unlless of course anything of note comes up at my next medical team meeting 30th May

Onwards & Upwards
Ian

Hello there,

So encouraging to read this thread Ian. I am hoping you can help me. My father has just started radiotherapy for 3 tumours in his throat and will also have chemo. I am unsure of the details as he lives abroad and is quite private. I want to create a package of must haves for when the side effects kick in. So far from your thread I have a Humidifier, Soft toothbrush, lip balm, soluble paracetamol, and chicken soup! Anything else you can recommend? Many Thanks indeed and all the very best for your continued good health xx

Sorry to chip in here Gem .., your dad will need more than paracetamol that’s for sure , not sure how it works abroad but on my husbands first radiotherapy treatment he was given Paracetamol , cream for his neck you need loads of this, anti reflux medication ,& mouth wash . Since then he has been given co codamol & more paracetamol , more cream , toothpaste & morphine ! I’m really sorry to load this on you , as you must feel so helpless . He will also need to try and keep his weight up so I give him loads of milky puddings , yogurts , porridge & thenlike basically nothing lumpy but this has only been in the last few weeks . He is having 33 fractions of radiotherapy and has 8 left . side effects have started to really kick in this week & took morphine for the first time last night. I think this treatment gets worse once it has ended for a few weeks at least . I am sure they will give him all the pain relief that he will need at the hospital as it’s strictly monitored . Here they also have a dietician & speech therapist appointment every week . This chat room is lovely I have had a lot of beneficial help here . I brought him a humidifier tonight as his throat is so bad at night I hope it gives some relief . All the best Gem for your father . Love Ginny x x PS I feel so awful posting like this but he will need more pain relief for sure . And water , water  more water & tea ! 

I don't mean to jump in, but I am.  It must be awful for you being far away and not really knowing what's happening.  Perhaps it might be a good idea to suggest to your father to ask one of the team to put a pain ladder management plan into place for him.  It's really important that your fathers pain is kept under control.  Don't be concerned if morphine is on the list of painkillers. When I say list your Dad may need a combination of painkillers.  What Gingo has said is so true.  Pain management is crucial.  I ended up back in hospital because my pain was not being managed.  I was so lucky that a brilliant junior doctor was on when I was admitted to hospital.  A busy ward.  Once she got me sorted with the pain it was like night and day.  I wasn't undergoing any treatment.  That was just after having one tonsil out.  Oh my, then I get told the other tonsil had to come out..  Second time around wasn't so bad because I was taught how to manage the pain.

My heart goes out to you.  It must be so hard for you being far away from your Father.  Gingo is also right up there when it comes to weight.  What I don't agree with is eating rubbish when the body needs nourishment and steps taken to help build the immune system up.

This is not going to be an easy road, but as the old hands will tell you, 'it's doable' .  When I say old hands I mean that with the utmost respect..  They're the living proof that the mountains in front can be climbed.  I will keep you and your father in my thoughts.  Wishing you and your father all the very best.  Take care.

Madeleine 

Hi gem. This is hazel hi to everyone on thread smbst Santander waiting for ferry so will reply in detail when I get home. Like Ian says please read our blogs we don’t hold back any punches. Pain killers are like my oncologist says clue in the name he will more than likely need them. Where about dis your dad. Send me s friend request if I want to talk private as wrll

www.radioactiveraz.wordpress.com plus liknks to Ian’s 

hazel xx