Want to say Hello

Hi Rhonda welcome to our small community yes food is the bane of most of our lives it does get better I am now 30 month almost post radiotherapy for tonsil cancer with several affected lymph nodes. I had acupuncture to boost my saliva production am sure it kick started the process. I still use xyimelt s at night and sip some water. Food wise it’s still early days for you but any questions pop on am sure someone will get bsck to you. We have another member Zarasmum she is also c u p being treated at the moment in Spain where she lives. I will send her a message saying another c u p  I’ve messaged her she’s in treatment tidsy so will contact you in a few days  

keep in touch Hazel xx 

Hi Rhondda welcome to the forum.

I am not much different in terms of time of treatment to you, my treatment finished in september- tonsil cancer with spread to one node

Much of what you describe is very familiar - i had lymphoedema too and have similar side effects to you. I also get a throbbing at the site of the original tumour which makes me paranoid.

Anyway as you say things will improve for you as time goes on! I cover everything in absolutely tonnes of gravy (i have a jug of it next to me when i eat) and just sip water if im finding the food hard work.

I also find that although meat is traditionally a tough thing to eat i can both eat and enjoy stews that have been slow cooking overnight (the meat literally dissolves)

Trev

Hi Carol and welcome to our small but imperfectly formed group.I am Dani and I am two years out of RT for base of tongue SCC.

Can I just say what a valiant effort you have made with your profile. Thanks you very much. It is so helpful for people, down the line from your introducing yourself, to be able to answer any queries you might have. At a glance.....or maybe a few....phew!! they can see your history.

Five months, while out of the acute phase of your recovery, is still fairly early so take heart that all the things that you miss will return to tolerable levels and you'll be able to enjoy your food again....I promise.

I have a tingly fizzy feeling down my back into my bum when I bend my head down which I have put down to "mild Lhermitte’s" though I must admit I have never done anything about it.

My saliva has been vastly improved by time, chewing sugar free gum and acupuncture and as it happens I have been talking to somebody about lymphoedema just yesterday and I have put a short post of simple exercises up in my blog today. There is an entry on acupuncture too if you are interested. There is a link at the end of the post.

We have a member PFJTHS who has been in your position of a CUP for some time but they eventually found it. You could check out his profile. There have been a few others too who have all been treated as if their primary was in the oropharynx and they are alive and well and living their lives. My point is that the oncologists are good at what they do so trust them. 

Do keep in touch and let us know how you get on

Kindest regards

Hi Rhondda

I was treated for base of tongue (oropharyngeal) cancer in June 2018.  I too suffered with L'hermittes although it has improved over time.

Not being able to enjoy food is certainly something I find very difficult but again, certain aspects have improved including taste and saliva.  Just remember to keep experimenting.  Something that was difficult to eat one day might be better a week later.

I'm glad you're able to look back and realise that things are improving to where you were and they really will continue to do so.

Pleased you've found us and all the best in your continued recovery.

Linda x

Hi Rhonda

Best wishes with your ongoing recovery as it does take a while and a lot of mental adjustment to get used to the ‘new normal.’

My cancer was not the same as yours but same as you one of the biggest things I had to come to terms with was how to cope with food.

Same as you the enjoyment was not there anymore.

I have recovered quite a lot of my taste but still have lots of things that no longer taste right. I am 8 years post my first radiotherapy and now 1 year post my last radiotherapy. I have converted from being a passionate tea drinker to a drinker of milo (it’s something like ovaltine if you don’t have milo in the U.K.) and have had to consign lots of other foods to the too hard basket mainly because of texture, dry mouth, lumpiness and having to mainly work with pureed food.

It took me a while with the help of the forum to work through how to manage the food issue so it did not get too boring. You can only eat so much scrambled egg, pureed baked beans and yoghurt.

I now trawl recipes for possibilities of pureeing them and when I go out I carry homemade soups and Fortisip with me and always have an eye on the menu to see if there is anything I can manage and mostly find something.

I used to get a bit down about it but now enjoy watching what others are eating and smelling the aromas. I even make up imaginary menus of what I will eat that day. Just ways of helping me get my head around things.

Everyone is different in their recovery and my story is different to yours. Don’t get down heartened about the food issue. Over time things will improve for you and you will find a substitute for anything that does not taste quite right.  As Linda said keep trying different things as one day you can’t manage it and a few days later you can.

Best wishes

Lyn

Hi Rhonda

As Dani mentioned I also have an unknown site from my primary.  Similar story to you with how I found mine.  I have been like that for just over a year and get regular checks.  I know exactly the feeling of every lump and bump needing to be checked and my team are great and they see me at the hospital with the relevant consultant ASAP and never think I am being stupid.

I never "progressed" past surgery for my tonsils and RHS lymph nodes being removed.  They are keeping the "big guns" back in reserve.  Actually I am quite happy with the watchful waiting process my hospital have me on - aside from the scoping, that I hate.  That said I am so lucky with my hospital.

A scoping 2 weeks ago found a growth on the base of my tongue where they thought the primary probably was hidden.  I had a panendoscopy last Wednesday and a biopsy of the site.  Results next Thursday.

Zarasmum, as Hazel, mentioned is in a similar place and we occasionally private message each other for reassurance.  Feel free to message me. 

I think it is a perfectly natural feeling of anxiety that we have when the primary is not found.  It is quite possible that the radio and chemo have dealt with yours, but the issue, I think, we have is the not knowing.  It is difficult.

Glad you're slowly feeling better.  Don't let up on any checks they may offer and hassle the hospital if you feel you are not getting the attention you deserve - Covid or not. 

Thank you for your welcome RadioactiveRaz. I’ve tried Xylmelts but can’t seem to get them to stay up on my gum, they have a habit of sliding down on to my tooth, but I do use Oralieve dry mouth spray though which has been a Godsend. I’ve noticed a big improvement during the night already. Whereas I used to wake up with a mouth like the Sahara desert and my tongue stuck to the roof of my mouth, I’m now just needing to take a sip of water 2 or 3 times a night  and the same with Oralieve.

Hi no problem don’t give up on xyimelts what I do is with sharp knife on brown side cut in half and just use one.  I found a sip of water before to moisten mouth then pop it in hold for 30 seconds. Boots also do a dry mouth spray in handbag size bottle worth a try it’s peppermint but not strong. ask anything we will always get back to you 

Hazelx

Unknown said:

I’ve tried Xylmelts but can’t seem to get them to stay up on my gum, they have a habit of sliding down on to my tooth

That doesn’t matter. They will stick to a tooth quite happily. Mine often do. 

Hi TrevW nice to chat to someone who is at about the same amount of time post treatment as myself. I’ve found that my whole diet has changed from what I ate pre-diagnosis to now. I was very much a savoury person who adored cheese and crisps etc but would never choose a dessert, pudding  or cake etc,. Now my absolute love and craving for crisps and cheese has gone and been replaced by a need for something sweet such as a cake, how crazy is that?! 

Had a bit of a downer for a couple of hours yesterday as I could feel that niggle in the area again so went down the “ what if it’s not worked route”, but today I’m over it again.

Anyway continue to enjoy your stews, I’m going to try faggots and peas tonight.