Head and neck cancer 'food survival guide'

Hi Josie

I have just been diagnosed with tongue cancer, (2 days ago) and had been wondering about food as like any male, it's me tummy that counts. Rather than being miserable I have decided I'm going to get something out of this which is going to be useful to others if I record it and pass it on.

I would very much like to contribute towards your efforts by keeping a food diary with recipes I try, ensuring I have both the good and the bad, along with suitable humourous opinions on my results. Would this be of any help?

Clivej3

Hello Josie

I had a tumour in my left tonsil and was treated with 34 RT & 2 CT from the beginning of May till mid June this year.

I went through many of the usual side effects, but managed to get by without a feeding tube, although did live on ensure drinks and soup for a few weeks. I did have to rethink how to swallow to manage even liquids, but fortunately made it through as I really didn't like the idea of the NG tube.

I had some mouth pain in the last week of treatment and for a couple of weeks after, and used oxcetacaine to help. I had been prescribed it to help with the throat pain, and discovered that if I held it in my mouth for a few minutes before I ate it would numb the pain in my tongue enough to let me get some soup or ensure down. By the time I was finished I would usually use some again to calm the irritation from moving my tongue about so much. One of the nurses suggested that oramorph could be used the same way and might help too, I tried this and although it helped, the oxcetacine was better.

This could go on and on, it may be better to message you with small amounts of information at a time under each of your categories to make it more manageable if you would like?

Ann

Hi I was thinking about doing the exact same thing! My partner has a sinus cancer. He had to have an operation which involved removing most of the roof of his mouth, his top jaw, therefore also his teeth and he can only eat pureed food. He then had to have a course of radiotherapy which made him lose weight drastically. I had to come up with some good things to eat which would blend smoothly and still taste good. So if you are interested in any of my ideas for your book just send me a message. Trust me I am now an expert at what will blend and what will taste good! For example when making soup - either tinned or homemade - put it into the blender along with a buttered slice of wholemeal or seeded bread and a tablespoon of Complan Stir in. Blend and then heat in the microwave. Very tasty and very high calories! Also for breakfast make ready brek as usual using full fat milk but add the milk to a 'scandishake' sachet, full of calories. I know what veggies blend well with cream and/or a little water or better still a good stock. I can give you specific recipes for soup and all kinds of dinners including things like liver and bacon and onions, stew, even a sunday roast, all of which can be blended very well. Pasta blends well too with cream and cheese. I have a lot of recipes which are good for people that can only eat blended food.

Hi Ukannie

I hope you are well. 

Your post was interesting to read. My dad was diagnosed with cancer in October 2013 - it sounds very similar to what your partner had as my dad's operation also involved removing the upper right jaw and the roof of the mouth.  If you don't mind me asking, what was the name of the cancer your partner had? And also, was the radiotherapy he received conventional radiotherapy or IMRT?

Look forward to hearing from you and best wishes,

Dee 

Hi Amanda,

I am sorry to hear about your husband's diagnosis - it is never an easy thing to hear, even if they do then go and tell you that they can probably make it better!

As for the feeding tube, I was determined that I was not going to use mine, but in the end it was an absolute life saver as I struggled with all sorts of side effects from the chemo (nausea, vomiting, constipation, slowed digestive transit) and from the RT (mouth and tongue ulcers), and while I did continue eating I could only manage about the volume of one egg at a time.  Needless to say I lost loads of weight, but without the tube I would have been in a much worse state.  It was really worth keeping up with the effort of eating during all this though, because it made getting back to more normal food much easier afterwards.

I will be quite honest - having the tube fitted was a very uncomfortable procedure, particularly as I had a most unusual reaction to it and my stomach muscles went into spasm for two days afterwards.  It was also very limiting for a few weeks afterwards, making even picking up a cup of tea difficult.  I couldn't lift plates into the cupboard, put shopping into the trolley, or lie on my side in bed for weeks.

The things I found most useful around that time were having a straw in my bedside drink so I didn't have to lift myself up so much if I needed a drink; having pillows under my knees in bed over night as I was sleeping on my back for about three weeks, and remembering not to even think about lifting anything heavier than a cup of tea for a week or two.

As for the book, I have only just started on it so it will probably be about a year before it is finished.  There will be much more to it than just recipes, as you can see from the projected chapter list in my first email, and it will be this that takes the time to get right.

I am not sure how the publishing will go yet.  It is possible that my local hospital will be providing the funding for the book, so they may have final control over how the profits are used.  It would certainly be something that I will raise with them though. 

Thank you also for your offer of help with the layout for the publishing - again, much depends on who has charge of that part of the process, so I can't say anything for sure yet.  I will definitely let you know if there is anything that you can do though, I have no pressing need to do absolutely everything myself!

Best wishes, and good luck to you and your husband with his treatment.  He will appreciate your support more than you can imagine.

Josie

Hi Clive,

Good for you, being miserable is no fun for anyone, though sometimes it happens anyway!  Sorry to hear about the diagnosis, life does take us in strange directions occasionally for sure. 

As for the food, it's not only men who give food such a high priority.  Last year, my friends and my husband finally convinced me that at 7 stone I was too thin and light (I am only 5 foot 1, and have been about 7 or 7 1/2 stone since I was 14, but apparently I was not looking well or healthy any more), so I decided to have a go at putting weight on. 

It was the complete opposite of being on a diet in some ways, but exactly the same in others.  My every waking moment was concerned with how much food I could manage to eat (rather than how much food I should not be eating).  I could eat anything I liked, but didn't want to because I don't eat dairy foods or sugar, so life became a long round of finding the highest calorie foods I could.

Anyway, I managed to put on a stone and a half over 6 months, which was a mammoth effort.  The first thing I thought when I found out that I had cancer was 'bugger, I'm going to lose all that weight!'  Sure enough, during the course of the treatment I spent 6 weeks more or less not eating, and managed to lose virtually all the weight I had spent so long trying to gain.

Now, once again I am obsessed with food because I want to put at least some of it back on, but it seems that much harder because I can no longer eat bread products right now due to a chronic lack of saliva.  I am on five meals a day just to try and get 2000 calories in, but still haven't managed to gain any weight in 3 months of trying.  Never mind, I am on a mission and I WILL do it eventually.

The food diary would be a great idea, and I would love to hear how you get on.  Perhaps this would be a good way to approach the book - we could have a panel of tasters who could give their opinions on all the recipes, and that could help people choose what to cook.

Good luck with it, and keep us posted on your treatment schedule and how it goes.

Best wishes,

Josie

Hello Ann,

How strange, we were going through our treatment at very similar times, though the numbers of sessions were a little different for me. 

I was very surprised to hear that you didn't have a feeding tube put in - they seemed to more or less par for the course in our hospital, and everyone who was having RT to the head or neck was recommended to have them.  To be clear, I am not talking about a nasogastric tube that goes up the nostril and down the throat.  The tube that I had was inserted directly through the abdominal muscles just under the ribcage, and into the stomach that way.  It is sometimes known as a RIG tube or a PEG tube, depending on how it was inserted.  It had its own challenges, but I wouldn't have wanted a nasogastric tube either!

I am very impressed that you managed to avoid the mouth pain for so long.  I developed an ulcer on my tongue in week 2 of the RT, and very soon it was the size of a penny.  Not to put too fine a point on it, it was agony!  I used Difflam to anaesthetise my mouth before every meal, plus doses of codeine. 

I found out the hard way that I am immune to the painkilling effects of opiates (oramorph, fentanyl etc), though they did stop me from breathing, so codeine was the strongest drug that I could take.  The Difflam was very effective, although when I first put it into my mouth each time it was so painful that I would have tears pouring down my face.  I was so happy when that ulcer finally healed, though I still have stiffness and scarring down the side of my tongue where it was.  I had no idea that it was possible to have a stiff tongue, but there we go.

Message about anything you like, I am happy to chat away, but for the sake of clarity if you want to split them up into different posts then that would be fine.

Best wishes,

Josie

Hi Annie (did I guess that right?)

I am hugely impressed that you have found so many interesting things that will blend well.  My mum made me loads of soups (her way of helping) so I never had to experiment with this aspect of it.  I wish I had, in a way, because I did get rather fed up of soup and scrambled egg!

Adding calories and bulk seem to be the two most important things when you are looking at pureed food, all these kinds of ideas are wonderful.  If you are willing and able to share them, I would be delighted.

Thanks very much,

Best wishes,

Josie