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.
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.
