Hi all

simon gill guzzle and eveyone else...I hope you are ok

backnin addenbrookes yesterday for multiple biopsies back of the toungue top of the larynx and where my tonsils used to be... via the pet ct c

scan all sites look to have traces of thr prime cancer cells but nothing difinative....well will wait for me results... but they have siad regardless of results they ard still going to microwave me...so I am expecting to start my 6 weeks of chemo and radio therapy end of june...ish

my throat is sore but nothing major....I cant drink anything too hot or too cold but..... but that will be gone in a few days.... god back to the days when I had my tonsils out

guzzle I think you had asked if I had been diagnosed ....yes I have a secondary tumour in my right neck lymph node..... but as I said they dont want to operate as they think the chemo will reduce it

anyway my wife is trying to fatten me up and is trying to make sure im loading those calories...she is also reading up on what to eat and I wondered if you had any tips for me

So how are you lot

Hi Vatch,

Good luck for the treatment phase. Has there been any talk of a PEG tube? Most people have the tube flitted as a matter of routine but some get away without it (Guzzle being one of those lucky few) - I'm wondering if that is due to the dose of RT they anticipate using. I couldn't have managed without if and I don't think Nicola could have either.

Anyway, in relation to food and in no particularer order, food I ate at some point throughout my journey.......

That's about all that springs to mind at the moment. It's largely a case of experimenting as time goes by to see what works and what doesn't. It looks pretty rubbish with a lot of tinned and packaged food but that's what worked for me. I didn't want my wife going to a lot of trouble to cook and prepare something only to find that I couldn't eat it. Anything with black peppers or acid was an issue - tomatoes were a no no due to the acid content for example.

Have you had your teeth looked at yet? Have they spoken about that? It's common to have a tooth check and for some to be removed prior to radiotherapy. Maybe you're going to be lucky with that aspect too.

Good luck mate

Simon.  

Hi Vatch,

My understanding is that an ng tube is a tube that is inserted through your nostril into the stomach to enable feeding via that route. I didn't have that although my 4-weekly check ups involve a small tube / camera up my nose and then down my throat.

I had the PEG tube from day one and, although it feels strange at first, you soon get used to it and it becomes second nature. I relied solely on it for all food, drink and medication for several weeks. Nicola did have a few problems with hers that are outlined within her thread - she had a few issues when it was put in.

All the best.

Simon.

Vatch, eat lots of everything that you like mate. Put a bit of timber on. Im last day treatment tomorrow and in overnight for rads. Still eating. Some poor guy here has been kept in post treatment ss he cant eat and is on NG tube. That wont happen to you with a peg Vatch. Good luck. Keep your weight up! G.

Hi Simon and Guzzle thanks for the advice

yep I am eating as much high caloried stuff as I can .... but my wife keeps giving me more ... any more and I will breakout in spots

Addenbrookes booked for Next Wednesday so just a waiting game now ... Throat sore but minor concidering what I am about to face so ... the soups (warm and not too hot i have found) and the soluable ibruprophen and paracetomol have been a gentle introduction to my impending feeding routine

Guzzle great news about finishing your treatment .... from what i hear its a flat two weeks then onwards and upwards

I think i have likened this process to one hell of a roll-a-coaster ride

i. a kick-*** high speed ride down a sharp hill at 90mph  for weeks 1 to 6

ii. then it flattens out for two weeks

iii. then that slow "chug chug chug" over the next 9 months as you slowly get back to the top again

I bet they dont have this ride at alton Towers

Id like some advice on the treatment process if possible

I am facing 6 weeks of Radio and chemo therapy, but as far as i know the radio therapy is a 10-20 session in hospital 5 days a week, but am i right in thinking that the chemo is a 4 hour job walking around (or sitting) with a slim down version of metal micky (a drip stand) or is the Chemo adminsitered differently for different people ... Guzzle am i right in that you said you are overnight for your Chemo

also do i get the chemo first or at the end of the week

I know i will get all this inform in a couple of weeks, but being a project accountant i work on the basis that assumption is the mother of all crew ups ... so i like to be prepared and ready in everything i do (knowing that in this case there are going to be variations along the way)

Sorry for all the quastions guys, but you are a great source of information for me at the moment

How are you doing too Simon, you are a year ahead of me, or i am a year behind ... both in fact

Hi Gary

Best of luck with final treatment.  I am sure it will be fine.

Then it is onwards and upwards (apart from the weight that is).

Best wishes.

Gill

Hi Vatch,

Many people have different regimes but mine was....

Daily radiotherapy for six weeks (Monday to Friday plus one Saturday to make up for a bank holiday Monday). These considered of a few minutes laying down whilst a machine passes over your neck. No worse than a dental X-ray- no pain or discomfort at the time. Have you had the mask made yet?

My chemotherapy consisted of 6 x weekly 8-hour sessions walking around the hospital with a drip-stand. I took several movies on an iPad to keep myself entertained. Two of my sessions were cancelled due to my low white cell blood counts (there was a weekly blood test around 48 hours prior to each chemo day).

Overall this arrangements were made so that it all ties in together - you can go for the RT with the drip stand for example, and it all worked like a well-oiled machine.

Good luck.

Simon

Hi Vatch

Glad to hear that you have a treatment plan pretty much in place.

Ice cream sounds like a good idea for the throat both now and once treatment starts.  With regard to other foods I would jsut say eat what you like and what tastes fine.

I have now done two mornings at work and they have been fine.  I had expected things to have changed and whilst there are a couple of new faces other than that everything is pretty much the same.  Will be off to work tomorrow morning.  Plan do do pretty much the same next week and after that will try 4 or five mornings to see how I go.

Best wishes.

Gill

Vatch, listen to your body buddy! I was virtually side effect free fore for weeks the started getting sore pack protein and cals in n. Moisturize with Aqueous and don't miss out bits like behind ears. Follow strict mouth hygiene. Use anti nausea post chemo. Keep light activity up. Use radiotherapy team as daily spocs fors meds. When you start getting sore throat use painkillers in staged manner but keep eating. If it comes to it treat getting cals in as a project to be managed.

Hospital regimes vary but given commute to Clatterbridge I was happy to stay in on chemo days get radiotherapy next morning and go home. It was time efficient. Chemo (cisplatin) required four hours saline four hours chemo four hours saline. I done three of these. Its a long day to go home from. If you can organise early rads next day and be away it worked for me. Again project management hat. Keep spreadsheet or similair of date, activities (ie treatment, appointments Dr etc, times, transport arrangements). There may come a time when you need / want a lift. The companies good, you may be tired and certain pain meds don't lend themselves to driving). If you don't have a peg radical weight loss may mean ng tube. The hospital in in would only administer this as an in patient. I met a guy today who is a week post treatment and still on the ward. He is an extreme cautionary case study into what could happen id you don't manage weight and eating without a PEG. I was not given a peg which really focussed me!

God Luck and ask me anything you want, Gary