Food is quite possibly one of the biggest hurdles when going through and recovering from treatment for throat cancer, once you have dealt with the psychological / emotional side of having cancer. Depending on where your cancer was found, in my case the tonsils, it is quite possible that there are very few visible signs of the cancer. I have slightly scarred skin either side of my neck, very short fine hair returning at the back of my head, and lymphoedema on my neck. Other that that I look well. Friends sometimes struggle with this as they think I don’t ‘look like’ someone with cancer, or assume I am ‘better’ now treatment has finished and I look well. Share a meal with me, offer to cook for me, or skim through a menu to find something I can eat and you soon find where my difficulties lie.
Post tonsillectomy some adaptations were needed as my throat healed, generally aided by lots of ice to numb the area. In the lull between the operation and treatment I took the advice of my CNS and just ate the dishes I liked, this was in full lockdown, so we didn’t have the opportunity to eat out. Anyone facing this now, get out there and have a real slap-up meal whilst you can really enjoy it, it might be a while. Then again, many on the forum are back to eating virtually normally fairly quickly, so you may just be lucky. I’d say I’m about middle of the road.
Food is a really important part of my life, hence I came into this fight with some spare capacity, although I was lectured at length of having to maintain my weight. Initially this is so that the radiotherapy mask fits snuggly, if not there is a risk it will target the wrong area. Once in recovery it is about giving your body enough calories to recover, combat the fatigue and in my case convince my surgeon I can sustain myself enough to have the PEG removed. Failed on the last point at my last clinic, but with support form my dietician and lots of bad calories I am stable. Before becoming a teacher, I worked in the pub trade. I ran bars for a number of years then moved to head office, my last role before leaving was in menu development. Every two weeks we tested food for safety, quality and new menu ideas. I regularly ate out to check guest experiences, or simply because I was staying away to visit the pubs I was responsible for. My husband also loves his food, in fact I may have married a feeder I have put on so much weight since we met. The minute we talk about someone coming to visit he goes into menu planning overdrive and no-one leaves ours hungry! All in all making this one of the cruellest cancers I could have!
My CNS went through the week by week likely side effects and how this would affect eating, from the dry mouth to ability to swallow. In those initial days I kind of nodding, thinking I was taking it all in, but in all honesty the penny didn’t really drop. There is most definitely a gap in the market for menu ideas for throat cancer patients. I have searched the internet no-end and struggled to find inspiration. I was too tired to play at length in the kitchen and come up with great ideas. Maybe at some point I will. Many suggestions I have struggled with, either the flavour was wrong or the texture unbearable. I never thought I would say that I find eating boring, but I do most of the time at the moment. Food has probably been the biggest flashpoint at home, as I have said ‘no’ to the many suggestions my poor husband has put to me.
I had a terrible ulcer, eventually stretching the full length of my tongue. This didn’t help the food situation as soups, smoothies, and all the soft / liquid suggestions just sloshed around my ulcer and stung like hell. This added to the already length list of foods to avoid. Off the top of my head this includes: anything hard / scratchy (crisps, tortillas, overdone toast, crusty bread, many cereals), anything dry (meat or fish without sauces, bread, wraps, potatoes without butter or cream), anything acidic (tomatoes, vinegar, citrus juice, most fruits, some veg, pickles, chutneys), anything spicy or irritant (so basically no seasoning). Some people may have had different advice and get on fine with items I have mentioned, so don’t take my list here as gospel. If you want to follow some of the online advice about diet and cancer you would also avoid sugars, but honestly once you take into account the above list you will need some sugary food to keep your calories up. This then left me with milk, porridge, pancakes, macaroni cheese, cream sauces, overcooked pasta, green salads, green veg, some fish, cream cheese – mostly beige food.
Initially I did fairly well with food. I avoided the key irritants of spicy and acidic food, but could eat pretty normally. I also found the steroids to counter ill effects of the chemo gave me an insatiable appetite – I could literally eat anything in sight from Monday evening to Wednesday. I need to mention at this point I have been vegetarian for 30 years, so that has had some impact on my options. However, I was diagnosed with unbelievably low vitamin D in the November before diagnosis, so has started eating fish to help boost this. Monday night for the first 3 weeks of treatment because fish supper night, by husband would drop me home after a day at the hospital to settle in and go and pick up dinner. I left more batter each week, but relished this until by week 4 it was just too dry for me, even with lashings of mayo. Steam baked salmon, with green beans and broccoli went down a treat for a while too. However porridge for breakfast every day became like gruel by about week 5. I put some of this down to the fact I am not a massive milk fan, so tend to have fully skimmed and had switched to full fat to keep the calories up – I just found it too rich and one morning couldn’t keep the porridge down, this was the first time I decided to pop an Ensure through the PEG. I knew I needed to keep my calories in. At about this stage I was also reverting to pancakes with ice cream and maple syrup for whatever meal of day that I just couldn’t face anything else. I could manage about 3 lightly done so there were no crispy bits. I tried pureed food, mashed potato, etc but just couldn’t take to it. I also went completely off onions and still sixteen weeks post treatment cannot face them to add flavour to food. Meals weren’t just beige now, but bland also – exacerbated by the lack of taste buds. Thankfully the metallic taste some people suffer from passed after a week or two, if you do struggle with this switch to plastic cutlery, by all accounts it helps a bit. I could manage soft filled sandwiches, eventually only on soggy white bread and leaving the crusts. Heavily buttered toast without the crusts was doable too, especially with scrambled eggs. I also managed omelettes all the way through treatment.
All of a sudden, mid meal on 3rd April (our wedding anniversary), the day after treatment ended I could no longer swallow food. I had found it catching a bit more over the previous couple of days. So, my first Ensure through the PEG meal was our 11th anniversary dinner – cancer really does suck at times! The smell of cooking was starting to make me nauseous and my husband couldn’t bring himself to sit and eat in front of me if I had nothing. I was also about to go into a very sleepy morphine haze for 3 weeks. This is when he stopped cooking much for himself, hit the ready meals and the dog developed the bad habit of begging from him at the table whilst she kept him company as he ate alone. A few weeks later I read a column in The Times by Rosamund and Jonathon Dean and her experiences of breast cancer that really resonated when they mentioned the loneliness of mealtimes.
After four weeks on the PEG I had built up my ability to drink more water, actually managing to drink and not sip. I decided it was time to try and eat again. My first ‘meal’ was a solitary Weetabix, allowed to soak up lots of milk for about 20 minutes whilst my painkillers, oxetacaine & antacid, and Difflam did the trick to get mouth and throat ready. 90 minutes after the first mouthful I had done it. The sense of achievement was as though I had run a marathon and I posted it all over Instagram. This was my first step on the road back to food. Each day the time it took me came down and I could manage two, or some Readybrek. I still had the ulcer, so soups were out. When I tried to drink Ensure again I found the mucous coming back, so reverted to the PEG for calorie top-ups. I was then back onto the pancakes with ice cream, cooling, a bit of egg & carb somewhere and lots of calories, but not the best. I again struggled with pureed food. Mash was even worse than before, the radiotherapy having made a mess of my mouth and it now being drier than ever. This was when I discovered I just really didn’t like food anymore. It was like the body snatchers had come along and taken me away. I was also determined after my six week clinic that I wanted to stop using the PEG. I did eventually manage to drink Ensure again without the nasal nightmares, initially downing one in 13 gulps, but now I am at 6. Let’s be honest, they’re not the nicest thing to linger over like a fine wine – but at this stage considerably more enjoyable than most food. In the search for calories and protein without the sugar I went all out for smoked salmon and cream cheese, rolled up like some kind of sushi. The biggest revelation here was that I could taste it. I also tried some fish meals, but found them too dry.
I really missed my mainly tomato & pulse based vegetarian diet. I eventually found a ‘tomato sauce’ replacement for pasta, by baking carrots, courgette and beetroot and blending them down with Italian herbs. It’s OK – looks like the real thing even though it doesn’t quite taste the same. My food struggle wasn’t about the ability to swallow, but how much I hated the texture of it which made it physically difficult to manage. Add in the fact I couldn’t have spicy acidic food. I discussed it with my counsellor as I felt no-one understood the problem. I have tried to explain it to people by comparing it to a disability. If someone cannot use their legs, they will use a wheelchair, so they adapt. I had to accept that I couldn’t eat some things, so had to adapt and find different foods I could eat. I hope that causes no offence, but was important for me psychologically to approach in that way. I had to stop food dictating my life. Around this time, one a night when I was being particularly awkward about food we ordered pizza (take-away pizza is much doughier, hence wetter that home-baked) – this was another milestone, much like the very first Weetabix. I loved it! It did leave my mouth with blisters, but that was a small price to pay for enjoying a meal. About a week later I cooked a very mild curry – again, pretty good. I had to be careful that I wasn’t experimenting with food on a day I had talked a lot – my throat couldn’t handle both types of bashing. Cakes are fine too, with copious amounts of buttercream and a glass of water or hot chocolate to hand. My real breakfast treat is freshly baked pastries dipped in hot chocolate – French style. On one of the sunnier days, we holidayed at home with French breakfast, bread and cheese for lunch and then salads for dinner, with more bread (crust abandoned and lots of creamy butter). All that was missing was the Pernod followed by wine, still haven’t had alcohol yet. I do enjoy pastis o’clock on a sunny day. Chocolate has been a bizarre one. When we had family over to celebrate some birthdays and my Dad & step mum’s 25th anniversary I had a chocolate – and loved it, I could taste it. I forayed back into my chocolate loving habit for a couple of weeks but noticed whenever I had more than a few chunks I had a hot flush and felt sweaty over the bridge of my nose – apparently this is down to the killed off salivary glands. Haven’t had much since.
I am starting to enjoy my food a bit more now. I can manage pasta, risotto, bread, cheese, salads (with home-made, low-vinegar dressings), cereals, the odd sandwich. I still can’t face onions or potatoes. I am also not fully up with most veg yet. When I went back to work for the odd day lunches were tricky, I just don’t know on a morning what I will be able to eat at lunch time, so I took some reliable Weetabix and managed an extremely healthy chocolate spread on white bread sandwich – plus the Ensures. I’m hoping I will be back on soups by September. It has been fairly warm, so prime salad weather which I love. Sadly, they just don’t pack the calories the way I need them to so I can have my PEG removed. So, I have been topping up with 3 Ensure a day and am switching to Altraplen (smaller bottles, same calories, handier to pop in your bag when out and about), their chocolate-hazelnut drink is a real treat. As you can tell my sweet tooth is raging away, so I am constantly swishing Florigard and Caphosol to avoid any oral thrush.
I haven’t felt as well as I do for a few years but am very conscious I haven’t eaten so unhealthily as I am doing. I will get there though. What lessons have I learned? Don’t stress about where the calories come from though this, food is medicine, eat what you can when you can for as long as you can, use your dietician for support. Experiment, if you struggle with something try it again in a couple of weeks – just as you would when weaning a baby! What am I looking forward to? A nice pint of ale / glass of full bodied red, patatas bravas, home-cooked curry having roasted my own spices, home grown and pickled cucumber (infamous with my fiends), nachos, halloumi wraps, honey roast nuts, Yorkshire pudding and onion gravy, ratatouille, salmon fishcakes with wasabi mayo – crunchy, crisp, savoury, spicy food. Oh, and that pastis in the sun. Good luck on your food journey with neck cancer, remember the folk on the forum can help when you struggle, or will be happy to hear of your victories along the way!
