What too expect

Hi Rishton newby, welcome to the group, you have come to a good place to get help from those of us, who have had more or less the same as yourself. The radiotherapy and chemo are quite tough although it is very doable, many of us on here have come through the other side and are here to help those who are about to start. As far as a PEG or a RIG are concerned if you are offered one I would advise you to have one. Some need to use them some don't, however it will be there if you need it, I was 100% relient on mine for about ten weeks, so for me it was a lifesaver. If you have any questions just ask away someone will always, come back with an answer if they can. All the best.

Regards Ray.

Hi Rishton and welcome. I got away without surgery but I can definitely help with RT. I had six weeks and by the end of week three I had an NG tube placed as I couldn't swallow anything. I too reckoned I could lose a few pounds but my oncologist said absolutely not. Losing weight is the last thing you need. You need protein and calories to cope with healing. I was told that if I lost more than 5% of my body weight I would be hospitalised. I did lose weight but not till my treatment had finished. 

Have a look at Mark's diary. It's a really good description of the changes to expect, but remember nobody gets all the side effects.

I can say that by six weeks after treatment ended I was eating soft foods and by 12 I had turned a real corner.

Mark's diary

Best of luck, stick around. There is lots of help and advice here

Hi.  Welcome to the club none  if us wanted to join I am Hazel 3.5 years post radiotherapy for tonsil cancer with several affected lymph nodes.i had a ng tube fitted week 3 as I was unable to sustain myself with food meds or even water. Best advise I can give you honestkybis don’t use this period as a diet ! If your team suggest a peg listen to them there are a few who do manage to go through treatment without a peg or n g tube but they aren’t the norm,  My blog below with links to others may help you. It’s not a walk in the park I did treatment and am happily living my life it’s not easy but its doable. I Was  constantly told not to loose weight as you will have a mask made for you for treatment and if yiu do loose weight another would need to be made.

hope this helps 

Hazel

Hi

ive just finished week 3 of radiotherapy, 3 more weeks to go. I was not offered a feeding tube as they didn’t think I’d need it. However I was admitted to hospital last week because the radiotherapy has affected my swallowing and ability to eat and drink. I can only sip fluids now. I’ve now got a NG tube. I wish I was offered a peg or rig at the start because it’s been very difficult the last 10 days or so, so stressful due to the fact I couldn’t eat and drink and I knew I couldn’t sustain myself. I actually wanted to be admitted for a feeding tube because I was sick, nauseated and thought I’d bounce into A/E with dehydration so I told them at the radiotherapy session things were bad and worsening. I would have preferred a peg/rig but they do not fit these as a quick fix if you need it like I did. It all has to be planned and booked in properly. Whereas NG tubes can just be fitted on the ward. I would say, if they’ve advised you to have it, then have it. I imagine once fitted they are more manageable and comfortable ((although I’ve never had one). It’s just the NG makes my nausea worse.

good luck

Elaine 

I wasn’t given the choice of stomach or nasogastric feeding tubes. I had a reactive NG rather than a proactive PEG. There are so many stories of pain and complications with PEGs I’m glad really. Though I do realise many people are trouble free. I gather it takes ages to  organise removal of stomach tubes whereas NG tubes can be removed by your GP nurse. I took my own out. 

Hi

yes when you put it like that, NG certainly sounds better. You took yours out Dani? But did you put yours in???? Ha ha 

Elaine 

Hi 

I was told the peg would stay in 2-3 months after treatment was completed as there’s a massive waiting list I suppose it’s down to each individual and their circumstances. 
thanks for the advise. 
how long did you  last from start of treatment before NG was required?

Hi Rishton newby, the RIG is very easy to manage, I got used to mine in a short time, when it was time to take it out, the district nurse came to the house and removed it, which took her a couple of minutes to do.

Regards Ray.

Thanks Ray 

can I ask how long from start of treatment was it before you had to use it or was it just a precaution 

Hi my n g tube was in for 3 weeks before treatment and 3 weeks after. I also took my own tube out in front if the nurses. 
pit was as I’ve said y lifesaver, until your in a position of being unable to swallow a painkiller yiuve no idea how frightening it can be. 
You can look at the peg as an insurance policy it’s there hopefully not ti be needed but if it’s worth its weight in gold had to sign a consent form agreeing if I needed the ng tube I would have it yiu could ask if that’s possible for you different trusts have different rules. I was. At a major cancer centre so there wasn’t ever  an issue with timings. 
Hazel