Your experiences of dietitians

Ruth I am so glad you posted on here. And even better to hear your husband had a very similar experience. Like pretty much everyone else on this forum our world was turned upside down by Bobs diagnosis, our teenage daughters (who just turned 15) have found it particularly hard. Old enough to want to know everything but not mature enough to cope with it. I think your thread is brilliant. I did wonder about buying a nutribullit and having read your post I now will. Poor Bob is really struggling with the burns and the secretions just now. We knew the treatment was brutal but I guess the magnitude of it only hits you when you go through it.  I’ve problem got a million questions Ruth. I’m so glad things are getting better for your husband xx

Hello magic tree, im afraid i do agree with you quite a lot about dietitians, i remember one say to me " well at least you don't have to buy your Ensures so that's saving you money " i was so angry with her. Im sure a lot of them have never tried some of these supplement foods, as they are not the best tasting especially after the  9 years i have been having them, they get boring. I do believe that a lady called "Josie from Glastonbury "is compiling a recipe book for head and neck patients but it has to go through so much red tape before Macmillan endorse these sort of things, hopefully, something will come of it as i know she is working hard on the book. All the best .

                                                                                           Chris x

The supplements are revolting beyond belief. I cannot accept that they couldn’t come up with supplements that had the same nutritional value but tasted less rank. I just don’t think they see it as worth the effort. I made smoothies instead, with nut butters for high calorie/low volume nutrition and diluted with milk, plus banana etc. Mike could not eat the supplements and vomited them up they were so disgusting. 

I’m sure the dieticians have never tried one! I think they should be NG or PEG tube fed for at least a month a year and made to drink the supplements for one meal a day to improve their empathy! 

Morning might be going off the subject a little but don’t you find there not many support groups for head and neck cancers in the community or is it me not looking in the right direction

Interesting feedback on here I'm going to say a few words in defence of dieticians as my experience on the whole was a positive. I will caveat this by saying that my treatment was at Addenbrookes in Cambridge with large oncology department and a dediciated head & Neck  dietician team which certinly helped in making their advice rleevant. 

I had 6 weeks of radiothereapy and chemo for tonsil cancer. Firstly I had a Peg fitted two weeks before I started trement no option on this and it turned out to be invaulable as I couldnt take anything orally after three weeks of treament. Secondly they calculated my fortcicips intake before I started so i knew what I had to take every day. After treatment was complete I really struggled to eat again as I had large mouth ulcers but after after a conversation with my diettician she researcged my specific issues and came up with a solution which was a spray called xylocaine which allowed me immediately to restart oral intake.

They also provided a clear hierarchy of foods guide which helped me chose what I could eat and suggested when I might be ready to move to the next stage. 

The process wasn't seamless with misplaced orders from Nutricia and pump food delivered instead of fortcips compact but overall I benefitted from having the dieticians input.   

Regards

This pleasing to hear bengallancer and it lovely to hear that you got great treatment and aftercare, On the whole, i cannot complain but maybe.  i expect too much from them. All the best and hope all is well. 

                                                                                     Chris  

I'm very glad to hear that and only sorry that your positive experience is not more common. We were at Guys and had a large Head and Neck team too so the dietitican advice should have been better. As I have said, ourmain one did seem particularly dreadful but there were a number of them and none were any positive help. Standards need to be raised so everyone is as happy as you were.

I will also say I had as much help as I needed from before my OP and for at least two years after and can still talk to them if I need to, they gave me any help I needed and more when I saw them and told them what I was managing, there are still foods I can't eat or are so much trouble I don't try very often, the only one that was a bit off was the first one to start me eating drinking at around 10 days after my OP, the problem was me as I was very depressed and was off with her (perhaps that could be the problem with others) I pulled myself together and had no problem with I think the 3 or 4 other dietitians I have seen since.

My next thought is that if you read the way/things all the different people on here can manage to eat and at what stages and the foods they can and can't eat I would love to know how any training would help them to see into the future of us all, most of what you eat is trial and error, also to a point personal taste. As for the so called unhealthy foods the tell you to eat that is to try and help you to keep your weight up (I'm still on the good food diet as I havn't been told to stop so am eating tasty food still), also I still can't eat such things as fruit because of the sugar unless it is covered in cream. I'm not saying that they are all good but I would say they need to be treated with some respect perhaps for the difficult job the try to do and they will probably think better of us.

We have two experiences with dieticians, the one linked to the general hospital so mostly deals with a broad range of swallowing problems was no good at all gave my husband a thicking agent in the hope that would help it didn't but it's been a great help in taking photographs of drops of water. Also very basic advice so that was no good. The one linked to the cancer hospital and deals primarily with head and neck cancer patients has been great. Fist question was what did you used to eat and enjoy, what are you currently eating then tried to work with that. So lots of ideas on how to balance small bits of purred food to get the taste rather than a homogenised plate of tastless yuk. How to try and enrich the food and then try and balance and supplement his food intake via his rig. Although he has been nill by mouth for a while now due to pain they still see him offer advice even mouth care exercises to try and preserve the swallow which is still there. Deal with secreations etc I think my hubby likes her soft Irish accent so again she maybe completely useless but it cheers him up.