My Eating tips and journey

18 months post treatment my appetite and taste are still improving, about the 90% mark, some of my favourite foods are still off limits, hot curries, steak pie . . .but I haven't given up on them.

Eating is a slower and more deliberate thing now....patience is required...and plenty of water and alcohol free Guinness to wash my food down .... but I am grateful that I can once again enjoy food....and jelly babies!!!!

Peter 

I can relate to so much of this.  I’m now nearing the 12 month post treatment. Im still rarely, if ever, actually hungry….despite knowing that I need to put back some of the weight I lost, and which is still very much work in progress, and very little progress at that.  I eat because I have to.  I do better when someone else does the cooking. Even before treatment I often couldn’t be bothered to eat when I’d spent a lot of time cooking it. It’s got worse since.  

The sorts of foods I found easier early on seem to be the opposite of the ones you did: I couldn’t do shortbread…or anything biscuity or crumby (still can’t)…but I lived on bananas, avocados, and smashed up mangoes.  The avocados were a blessing because I don’t do dairy like yoghurt, cream, custards…all things I was being advised to add to my diet to bump up the calories and ease the swallowing.  Avocados were a great smooth soft source of calories.

Fish was ok as was steak, as long as it was rare…still mooing according to my husband.  Chicken is still a no no, ditto potatoes of any kind and rice.  Pasta is fine now, although that took time and, contrary to my every instinct, I found M&S ready made lasagne easier to eat than the homemade variety.  I enjoy a well flavoured prawn cocktail…hubby has a great line in these.  From the outset my smoothie maker was a godsend.

Im getting quicker now, which is a blessing on two counts: we can share a meal now in a reasonable time frame and - fanfare - I can eat my food while it is still hot…or at least warm ….rather than stone cold. It is also making eating out easier and more enjoyable.  I’ve tried not to let the swallowing issue get in the way of eating out….and I’ve found restaurants more than happy to serve smaller portions and tweak plates to avoid stuff I couldn’t, or would have had difficulty eating.

Like you I get bored with eating and resort to the smoothie powders which the system is still kind enough to prescribe for me…but I jolly them up a bit with fruit juice and fresh or frozen fruits….probably a nightmare for my teeth…but hey, something has to give.

I so understand the fear of swallowing.  In the early days food was the enemy.  I had no excuse, because I had very little if any pain….but swallowing was, and to some extent, remains, difficult.  I have to really think about it and concentrate on it.  Counterintuitively perhaps, I find that swallowing larger mouthfuls is easier and less likely to ‘catch’ …but I still have good and bad days, although things are getting easier.  It’s just a relentlessly slow process.

For the last couple of months I’ve started to enjoy the odd glass of wine.  Not sure if that’s progress or not….and there are probably all sorts of reasons why I shouldn’t drink the stuff…but after the year my husband and I have had (and I still think this treatment is as tough if not tougher on those closest to us as it is for us going through it) I just think ‘sod it!’

Liz

Hi Liz 

Certainly is very tough on those closest, they have to watch as we try to get on with it, put up with our moods and moans, take on extra workloads etc., I always made sure my wife had a good deal of 'me time' 

Peter 

Oh I’m so happy you responded. I was hoping you would. 

I can relate to everything. 

I need to eat more avocados on toast or sour dough. Like you, food is a case of get it down so I can go play.  

2) when things started to get tricky I was having banana + fruit smoothies until they started to burn the hell outta my mouth.

13) choccy and cake, I've lost the desire for them as having little saliva takes away the enjoyment.. crisps I have occasionally, but with plenty to help wash them down..

19) when I was admitted into hospital, some of the anti sickness meds made me very drowsy, and I actually woke myself up at one point by the clashing of my teeth coming together.. I was dreaming that I was actually biting into some cheese on toast! 

Hi it does improve takes time. I used to dream of a packet of crisps I can eat them now but hand cooked are certainly better than walkers or supermarket own ones. I had a period of burning tongue came in around z2.5 years into recovery I kept a food diary  and triggers for me was anything)ng fermented including * my favouring food cheese of any type. Ent said it happens it’s our taste buds going into overdrive I used to barter with myself if I really really wanted a cheese sandwich I knew I would suffer with burning tongue, some days I put up with it. Pleased to say it went as quickly as it came took almost a year though,

At 6 years what can’t I eat spicy chilli in anything, curries all types  learned to adapt when we go,out for food if spicy on the  menu husband as it otherwise we would be cooking at home 2 different meals as he likes a spicy dish he’s not a foodie so no loss to him he eats what I eat. Well he doesn’t eat cheese. 
chicken breast if I hit it with a rolling pin to flatten and break the fibres i can pan fry it and eat it. Otherwise it’s chicken legs and thighs. I have no tolerance for alcohol didn’t drink much before so for me no loss  I still try a sip of whatever hubbys having occasional but inside mouth and throat burns so happy to avoid , I can drink a real ale or a Guinness  but wine and spirits no.

We do go out to eat I’ve never been bothered unlike some who can’t happily eat out I used to order  a child’s meal and I found if I explained why many places would cook a smaller portion off the main menu of an adult meal  

chocolate I got back at an early stage which pleased me , I have a square of 70-80% most nights can’t eat cadburys or cheaper chocolate .

Meats I can eat almost everything but not  supermarket meat it has to be from butchers I would sooner pay for the quality even if it means eating much less than previous  Lamb is my favourite meat especially shoulder in a slow cooker  Fish has always been ok  

And dontbneed anything to wash the food down either and speed wise I’m a tad slower than before treatment  Bonus is husband finishes first/so he washes up  

If asked which foods tyoe I would choose  to eat out Italian I can usually find a few good choice  we do have more vegetarian foods and aubergines are my favourite as so versatile  

Having an allotment we have home made vegetable soup most lunchtimes , even when in Spain the vegetable there gave me more choices  I make a weeks worth at a time   

It does take time for many if us but there’s light at the end if the tunnel  

hope this helps 

plus I can now drink our tap water at home  so mouth must be getting better  

Hazel xx

Hi DesR

Glad you are making progress in the eating department. It is rather a long haul but sounds as though you are getting there. I particularly picked up on your point about not realising how much socialising revolves around food.

That is the most difficult thing I find. I can only eat puree and will have to do so forever after my ops. That I can manage and am getting on fine with. However I have just joined a friendship group. They have very interesting speakers and the members are lovely but the meeting is always held over a dinner. There is never anything on the menu I can manage except icecream. I always get questions about why I am not eating a main meal. Unfortunately I dribble out of the side of my mouth as a result of my ops which I cope with by lots of mopping with tissues. I get embarrassed as even after I have eaten the icecream there is rather a long phase of it dripping out of my mouth so I have to hold the tissue over my mouth for a while. I can't eat and talk or the dripping gets worse. I eat before I go so think that from now on I will just have to pass on the meal altogether and be ready with the reason why. Up until now I have said that I have had a few jaw operations which has affected my ability to chew so can't manage anything on the menu. That has worked O.K.without too many questions. Same happens when I drink so I put a small glass of lemonade in front of me and pretend to sip it from time to time. Not sure how else to manage the eating out situation. No problems with my family as they know the situation.

Lyn