Head and neck cancer - when food is fuel

A photo of a pathway leading into a tunnel formed by overhanging trees

We know that receiving a cancer diagnosis can be scary, especially when you don’t know what to expect.

Members in the Community have been there. They can help you to face those worries. Through shared experiences, they can help you face the unknown and make you feel much less alone. 

In this Community New Blog, we’re highlighting the head and neck cancer group and some of the issues members face through treatment and beyond. We’ll be focusing on eating problems, maintaining weight through treatment and staying as healthy as you can.

Many members come to the Community looking for support with eating the right foods through treatment and dealing with side effects.

"End of week 3 and taste buds have gone.  Does anyone have any ideas of what foods they can still taste?" - Carran, head & neck cancer forum

“I have just completed my 2nd week of radiotherapy and it is going ok but my tongue feels sore on the right side. Clearly it is the treatment impacting but is there anything else I can do? It makes eating difficult and on that point since my tonsillectomy I have no taste.  In fact it has become really difficult to continue eating a normal menu. So for any of you that as gone through it how did you manage any little tips?"  – AG14, head & neck cancer forum

Members were keen to suggest getting some help from their medical team for any soreness or discomfort, first and foremost.

"Your team will all be aware of the progression of symptoms so should supply you with stuff to keep you comfortable so don’t play down your discomfort." - Beesuit, head & neck cancer forum

Once any pain and soreness is managed, you might still have difficulties with swallowing or tasting food. Across the forum, lots of members mention the need to treat 'food as fuel' and find different ways to keep the calories going in. 

"You just have to take each day at a time and get enough food and water into yourself to keep your weight up that is your number one priority." Minmax, head & neck cancer forum

If you'd like to read all members responses, sharing their own experience and offering tips, you can find AG14’s question here and Carran's question here in the head & neck cancer forum.

A photo of a long viaduct, moorland and a summer sky

Some head and neck cancer treatments may result in a particularly sore mouth or throat, or you may develop more severe swallowing difficulties. Your doctor may suggest you need to be fed through a tube for a while, to ensure you have enough calories to maintain or gain weight.

There are different ways you can be fed by a tube – nasogastric (NG),  percutaneous endoscopic gastrostomy (PEG) or radiologically inserted gastrostomy (RIG) tube. You can read more about nutritional support on Macmillan’s cancer information pages here. 

We know that for some people, the thought of needing a feeding tube can be really distressing. The Community is a great place to find people who have used a feeding tube through their own treatment and can help by sharing their experience. It can be reassuring to know what to expect and that you're truly not alone.

"As I'm having RT to both tonsil sites they want me to have a feeding tube, which I'm dead against, in fact I hate the very thought of it." - Mark777, head & neck cancer forum

Ronnie95 shared their own experience of having a PEG feeding tube.

"I was completely freaked out at the suggestion of a PEG initially, but am so grateful I had one" - Ronnie95, head & neck cancer forum

Several members suggest that it's better to have a tube fitted when offered, rather than leave it until you really can't manage to eat.

"...having a tube in place as "insurance" before treatment starts is a much easier procedure than having one put in during treatment if/when it becomes neccessary." MikeO, head & neck cancer forum

"I had a RIG fitted before my treatment started, after 3 weeks into the treatment I was 100% reliant on it, and I used it for about 10 weeks in all. My advice to anyone who is offered one  is to have it. By having it, if you can't eat it is one less thing to worry about. The way I look at it is, its better to have even if you don't need it, than need it and not have it." - old biker, head & neck forum

If you're looking for more information from Macmillan around eating problems and cancer, you can find this here. 

You can read more about nutritional support on Macmillan’s cancer information pages here. 

Macmillan also have some general information to help you cope through treatment. In addition to eating problems, cancer treatment can affect things like your emotional well-being and your relationships. We have information about the help and support available and advice to help you cope available here.

If you need help with talking to your healthcare team, there are some guides on the main Macmillan website here.

The Mouth Cancer Foundation also gives information and support to people affected by head and neck cancers.

I hope this blog has been useful for anyone currently going through head and neck cancer treatment. If you have any questions for members of the head and neck cancer group, I'd encourage you to join the group and post your question so that members can offer you some support. 

Please don't hesitate to get in touch with myself and the Community team if you need any help finding your way around, or using the Community. You can contact us by email at community@macmillan.org.uk

You'd also be welcome to comment below if you've found this helpful, or want to offer any thoughts or feedback. 

Anonymous
  • Thanks for highlighting this.

    Despite what the treatment does to us, head and neck cancers are generally very curable band a good life to be had after recovery 

    Our medical support is usually spot on and the treatment doable  

    Chemotherapy can be particularly difficult as it is combined with the simultaneous assault of radiation. 
    It can leave some with a fog to live with for many months 
    Radiotherapy especially to a sensitive mouth and throat has a huge impact. It flattens patients completely and often makes eating impossible for weeks. Recovery can be prolonged.  Often there is a real turning point at 12 weeks but most of us are told by our clinicians that we should be feeling better two weeks after treatment ends. Normal or new normal takes much longer. 
    There may be long term physical effects to cope with and significant mental adjustments to be made. 
    I highlight this particular essay by psychologist Dr Peter Harvey which throws much light in how we feel “When The Treatment Finishes” 

    www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf

  • Hi 

    Thank you so much for your feedback and for sharing your thoughts. 

    I'm sure this will also be really helpful for anyone reading the blog.

    Best wishes,

    Steph

  • I have been using the Head & Neck Forum since my diagnosis in early Nay 2021 and I so very much the advice send support I have received from all of the members there. I would recommend it to anyone with any concerns.

  • Also - There us no such thing as a stupid question. ThumbsupGrinning

  • Thank you for commenting here .

    It's good to hear that you've used the head & neck cancer forum to give and get support. I hope you've found it really helpful and a great comfort to be here.

    Definitely no such thing as a stupid question and members can ask anything they like without judgement.