Eating & recovery post Radiotherapy for Head & Neck

Katej5833 said:

Realistically how long did people take to get ‘back to normal’ ??? 

There never is an old normal, completely. I wasn't OK with my food for six months. I didn't start morphine taper till 12 weeks. By then I could eat but it tasted of nothing and I had no appetite. I can instantly recall sitting at the breakfast table spooning ready brek down with tears pouring down my face with the nausea.

Katej5833 said:

It’s hard to keep her upbeat to be honest as every week we say, it’ll get better this week

Try not to tell her that because that's not how it happens. It's a day at a time with some days going backwards. Your mum has only just got out of the worst immediate after effects of the radiation. Keep a diary of how she eats and how she feels,how much she gets up and a bout. Look back on it every couple of weeks and you'll see how far she has come.

Foodwise try eggs scrambled with Philly added to keep them soft. Poached eggs. Soup but not tomato. tinned macaroni cheese. tinned pears. These last two got down fairly easily without chewing. Dunk biscuits in tea. Supermarket trifles.

Just a few ideas on what to try

Once she is eating a little better try toasted tea cakes dripping in butter. You'll be surprised how much easier toasted bread is than straight out of the bread bin.

A day at a time. She'll get there as long as both of you don't set unrealistic goals. Patience

Two years out from finishing treatment (CRT) and my taste and appetite are still improving, I can enjoy most foods and drinks, alcohol free ales, soft drinks, coffee and tea. I was told to challenge myself with different foods by my dietitian and CNS, certainly worked for me.  Took about 12 months to get back to anything like normal, albeit a 'new normal'.

Hi Katej5833, firstly well done your mum finishing her treatment. She is still in very early days of her recovery; she seems to be doing very well. Unfortunately, recovery can't be rushed, it takes time, and she has to give her body that time to recover, there is no set time for recovering, we are all different so, a timeline can't be put on it. I remember eating was a real chore and unpleasant for a good while, and taste seemed to change almost every day, just try her on little amounts of different soft foods. It often seems one step forward and two back, but she will get there.

Ray.

Ok so I guess my next question is would you have wanted to know this at her current stage or is the hope that next week will be better, better? 

Yes I would have wanted a trajectory and I got that from this forum, from fellow patients who have walked the walk. Oncologists tell us that we will feel better by two weeks after RT ends. I think that is wrong but maybe they say that because the treatment is so awful there must be a ray of light at the end. My oncologist was much more truthful. He told me my cancer would take a year out of my life and he was right. 

So would you have wanted to know it would take weeks/months to eat & drink normally or would that have been worse? 

Do you wish someone had told you this part would take so long? 

Just like you are doing, I came on this site, and asked questions, and got lots of other people's experiences, on treatment and recovery, along with great support.  I was aware it could take a good while. In my case it was probably about six months before food started to taste anything like it should and start to be enjoyable, however people have said they were able to eat all the way through their treatment and recovery. We all heal and recover at different times. Stick with us, we're all here to help if we can.

Ray. 

You can see from the responses that everyone is different. I think Dani is spot on with which foods to try. I would have written the same list. I'm a year out of treatment and I dread the one meal I make myself have each day. My taste has improved but not much, I tend to choose based on texture. Currently I still take at least 2 (200ml) of prescription Aymes actigain, which I top up with 200ml of various plant based milks twice each day. This is how I maintain my calories. I think it's my new normal. Your mum has only just finished her RT, the 2 weeks following this treatment I felt worse. The improvement was very slow but it all improves with time. 

Michaela

My consultant stated that it would take between 6 months to a year for taste and appetite to surface again...he was bang on.