Hi Jennifer,

Welcome to Cancer Chat.

I notice that your question has been left unanswered here for a while, so, although I know nothing about throat cancer I thought that I would reply to you. I have had two bouts of breast cancer, so my experience is not much use to you.

I would imagine that your partner doesn’t feel much like eating at the moment, but would think that soups and pureed food are the answer. If he cannot tolerate these and is losing weight there are some build up drinks which his care team or GP can prescribe. If you use the search facility on this site and look up throat cancer or eating with throat cancer I’m sure that you will find sone practical advice.

You could also contact the nurses on this site, who are very helpful. You can do this by posing a question in the ‘Ask the nurses’ section, or you can phone them. The number is Freephone and is 0808 800 4040. I am sure that they could give you some guidelines. Did your partner’s care team not suggest appropriate things for him to eat? You could also contact them and ask.

You might also find some tips under the 'Healthy Living' section of this site.

I hope that you get some answers soon.

Kind regards,

Jolamine xx

Hi Jennifer

Lime your husband mine had 5 cycles of chemo and 30 fractions of radiotherapy for primary tonsil cancer with lymph node mets following diagnisis in December 2015. I have to say that we we're told it was difficult treatment but couldnt have imagined how hard it would be.The only advice I can give is perserverence is the name if the game - at first Pauls throat was so sore he physically  couldnt  swallow so he gave up. We used loads if high protein drinks and as he had a RIG feeding tube we used this to make sure he got enough calories. As his throat eased the mechanics of swallowing due to the lack if saliva made eating diffucult so we used lots of soups and foods that had sauces and were soft. I think the most difficult thing was the fact that he couldnt taste anything at all so that made eating a miserable experience. As his taste has returned - more different than before - he cant eat sweet things anymore and he loved them ! - we've found things he enjoys . One thing we have found us gluten free options are much easier for him to eat and swallow. Things do improve and a year and a half later we are looking forward to the future. I still check restaurant menus before we go out make sure theres something on it he can manage,he has a large spoonful of mannuka honey 24+ everyday, I still make sure he always has a bottle of water with him especially when eating and I always pack our own snacks when we go out to make sure he has something should he need it. He list 31/2 stone with the treatment and gas only put 6 pounds back on so far but hes doing well and in remission. 

Good luck and feel free to message me if you want to chat

Emma

Hi Emma

I am new to the Forum . I finished my treatment in January 2019 for Cancer of the Tonsil . I had both Radiotherapy & Chemotherapy & every Side effect you can get I got it . I am now battling my way through Trismus ( a Closing of the Jaw ) & this is being treated with a TeraBiter which is like a medieval Vice that I have to use 50 times a day. I am also being treated for Lymphodema , twice a week at the Cancer Centre. It is refreshing to read your Post & that there is light at the end of the Tunnel . It has been a horrendous time for both myself & my wife. Recovery is so so slow. Food wise I am unable to eat Meat, Chicken or Fish . a combination of both the effects of the ChemoRadio & having to have 9 Teeth removed from the back of my mouth in preparation for the Treatment. I would be grateful for any advice you can give on Foods that I could possibly eat to put on Weight. Like your Husband I lost 4 & half Stone & have only managed to put a half stone on since January.I was lucky in that I never lost my Taste but I am very restricted in what I can eat. I always carry a Bottle of Water with me but I am finding Restaurants so difficult .I have just had my RIG removed about a week ago & my first PET Scan was clear . Thank God. I am a keen Golfer but only just managing to rekindle this love affair with the game now. The Fatigue is exhausting trying to get a full round in . I am struggling my way through. I have a seies of classes coming up in minfulness & I am also being put forward for Scarwork Treatment.

Good to know that Perserverance is the Key .

Regards

Paul .

Hi Kinsale,

A very warm welcome to the forum.

I am so sorry to hear about the hard time that you’ve had and, the difficulty you’re still finding with certain foods.

Have you discussed this with your oncologist/care team? They usually give you advice, or refer you to a dietician. We faced a similar problem with my father-in-law earlier this year and, found that build up drinks and puddings did help to put on weight. We did have to try different ones to see what he could cope with, as some taste awful. These were provided on prescription.

We also found that pastas in a sauce could slide down the throat as could some soups, scrambled eggs and puddings. He couldn’t manage a full meal, but we gave him something on a little and often basis.

I can understand the difficulty in restaurants, where most of the foods you would have chosen previously are now out of the question. I have a very dry mouth and oesophagus as a result of medication and find that sparkling mineral water works better for me than still water.

I am glad to hear that you have your golf to keep you occupied and, that you are not too exhausted to be able to get around the course. The extreme fatigue is difficult to cope with. I eventually found that I had to listen to my body and given in to it where necessary.

I have had 2 bouts of breast cancer in the past 10 years and also have lymphoedema. I wear compressed sleeves from shoulder to finger tips in between my visits to the lymphoedema nurses. However when I attend the Lymphoedema clinic I get so many layers of bandaging that I feel like the Michelin Man and get some very strange looks from all and sundry when both arms are bandaged up.

What type of treatment are you having at the clinic? Do you have MLD and, if so is it carried out by a machine or a nurse? The machine didn’t work for me, so I have to rely on manual.

I hope that your ‘medieval torture device’ or TeraBiter is helping with your Trismus and that this is beginning to resolve.

I am thinking of you and hoping that things start to get a little easier for you. Please remember that we are always here for you.

Kind regards,

Jolamine

Hi Jolamine.

Thanks for your post & best wishes.

Yes I have a full team looking after me with the Dietician & Speech Therapist looking after my needs. I suppose what I am trying to say is that it is all moving so slow & if there is light at the end of the Tunnel in getting my Saliva back . Learning how to eat again with the new tissue being generated inside my throat is a very complicated process. 

Like your Father in Law I have Water with everything . It was reassuring to hear that one of the earlier subsribers to this post eventually got their Saliva back eventually. I think Preserverance is key.

I am sorry to hear you have had 2 bouts of Breast Cancer with  Lymphodema. That must have been a very difficult for you the second time round. 

I am on my way to the Lymphdema Clinic later this morning where they use the machine. It works for 3 to 4 days then returns . Hopefully it will go eventually.

Again thank you for welcoming me to the Forum .

KR

Kinsale.

Hi Kinsale,

I am glad to hear that you have the complete care team attending to your needs. Have you been given any build up products yet? If not, it might be worth asking your dietician about them, as they might help you to restore some of the weight that you've lost.

You should find the classes that you have lined up helpful. I have attended both and benefitted a lot from both, albeit in different ways. Suffering from extreme exhaustion is no joke. I had this for the first 7 years of my journey and, although I am still tired, it is nothing like that exhaustion of the early days. Be good to yourself and give in to it. Trying to force yourself through this only makes matters worse. Take a nap when and as you need one.

Have they tried manual lymphatic drainage with you instead of using the machine? I found this much more effective and, now only need to attend the lymphoedema clinic every 12 weeks for 2 weeks at a time. I have 2 visits a week for this spell and am bandaged up in both arms to look like the Michelin Man. I wear elastic compression bandages in between, which are not the most comfortable things to wear. These cover me from shoulder to fingertip and I have 2 different types of these to wear. - one for day time and one for night.

I have a dry mouth due to medication and always carry water with me. This can make it difficult to swallow certain foods. I dread to think how you are coping with learning how to eat again during this period when you are waiting for your tissues to regenerate in your throat. It cannot be easy.

I hope that all goes well for you at the lymphoedema clinic this morning

Kind regards,

Jolamine

Hi Jolamine

Apologies for not replying sooner. I have had no build up Products proposed to me yet. Will need to do this soon.I presume you are not talking about Ensure as this was being fed to me via the RIG .

My lymphodema went as well as can go on Monday but it is such a slow process. The Terabiter Exercises are killing me . My Jaw is so sore after finishing that I am not fit to eat.

I know its all part of the Journey but its neverending . I thought by now I would be back at my Job in London but the fatigue is sapping the energy right out of me.

KR

Kinsale

Hi Kinsale,

Ensure is a build up product, but there are a number of different ones available. There are also some yogurt type puddings. These are available on prescription. You will probably find that you prefer certain makes and flavours of these, so it might be worth getting a mixed lot first time around.

I am glad to hear that your Lymphoedema went well on Monday. It is a very slow process. My arms haven't reduced in size in the past 10 years, but neither have they increased. They keep telling me that it is still worth attending to maintain the status quo. Your exercises do not sound pleasant at all - I hope that they are helping your jaw.

I hope that your fatigue lessens soon. Mine lasted for 6 years and I just had to give in to it, whenever it hit me.

Kind regards,

Jolamine

I am one third into treatment for cancer at the base of my tongue. I have lost weight at an alarming rate  going from 92 kilo to 63 kilo in 6 months , thats a 42 inch waist to 32 .  Everything tastes revolting , even water.  A peg operation had to beaborted half way through due to an approaching heart attack. I had virtually given up  and wad redigned to die .   Then i was told to try porrige oats withsalt and a little milk. It worked !   It helped to use a blender to reduce the size or the uncooked oats . But it probably saved my life. I can swallow it and keep it down. Trout  under cooked , undercooked pink lamb i can eat and taste  but no other meat.  Mackerel is good and  soft boiled eggs are ok , but one can get tired of them soon. Eating is not helped by loosing my back teeth !  Fortified glucos drinks i can take and Indian tonic water i can drink. But tap water is bitter and metalic. 

I hope that helps , i am not a great writer and can hardly see now , but i know how difficult eating can be. I have seen so many people get through this, lets trust we can . Good luck.

Hi Ron 

My apologies for late response as I have been away. You sound as though you have it very tough as well. Food wise I am glad to hear you are beginning to eat again . I agree Porridge is a life saver. I put Milk , Coconut Yoghurt & Apple Sauce with mine & it is my one stable meal of the day.I see you can also have a little bit of Trout & Mackerel - I am not yet at that stage.

I did have Lasagne last night but some of it came back up after I had finished the meal . Perserverance is the key I am being told but it is such a long slow road . There are times when I really need to focus as I seem to have chronic fatigue as well. 

Good Luck on your journey Ron, I really hope all goes well with the rest of your treatment . The Side effects are tough but hang in there as they will pass.