Hello everyone,

I was diagnosed with stage 3 OC in February this year. I turned 34 just after I had surgery, I used to smoke but quit some time ago and wasn’t a heavy drinker and being a woman I wasn’t the stereotypical candidate so it took a while before I was diagnosed - I know one can’t dwell on the what ifs but I can’t help but wonder if the dentist who saw me in October 2018 had picked up on the cancer whether I would have more left of my original tongue or if I would have been spared the brutalities of radiotherapy!!

I had 2/3s of my tongue removed and reconstructed using a skin graft from my left thigh. Initially they wanted to do the skin graft from one of my forearms but I’m a goldsmith so my hands are my life and I couldn’t afford to risk losing all feeling in my thumb. The graft sight has been the least of my worries and apart from a very large scar i haven’t had any problems and was able to sit up crossed legged within a few days of my surgery.

I had a full radical neck dissection to remove all my lymph nodes, one of which had become problematic and was matted to my jugular vein. They had to remove a section of the vein, retie it and in doing so unfortunately damaged my nerve. This has caused me a few problems and I’m on pregabalin for this which I’m hoping won’t be permanent.

I had a tracheotomy for nearly two weeks and was in hospital for 2 1/2 weeks, I would have gotten out quicker if i hadn’t caught an infection in one of the drain sites on my neck so needed an IV course of antibiotics to fix that.

Luckily for me, the cancer hadn’t spread any further that this one node which spared me having to have chemotherapy. I did have to have 6 weeks of 30 sessions of radiotherapy, the side affects are brutal. I’m only 6 weeks since my final session so still suffering heavy fatigue, mouth ulcers and the horrid mucus like saliva which must be one of the worst ones.

I have lost a ton of weight and my main focus at the moment is nutrition and getting enough calories down me each day - when does this finally get easier? I’m so sick of it being the main focal point of every day and tired of the nutritional high calorie milkshakes and only being able to manage a soft diet. does swallowing ever become a mindless action again and does one ever get back to eating normally again? I had been doing so well but have found myself falling into a bit of a dark hole 🕳 in the last few days. I have suffered from depression in the past and desperately want to avoid going back on anti-depressants if at all possible.

I’m relieved to have found this forum as I haven’t spoken to any other OC survivors yet - as much as I know I would never have got this far without the amazing support network of family and friends which i’m blessed with - it’s impossible for any of them to understand this rollercoaster of a journey I’ve suddenly found myself riding. I haven’t yet had a chance to properly explore the forum and read many threads but just wanted to say Hi and introduce myself a little so HELLO 👋😊

I’m not sure how to get my signature to show, I thought i had filled it in and ticked ✅ the show signature box so if anyone could help me there i’d be hugely appreciative 🤔!

I'm not sure swallowing ever becomes a mindless action, exactly, but it DOES get better. You get to where you don't think so hard about it ... but yes, choking randomly still happens, and seems like it maybe always will. I'm about five years out of treatment now, for that stuff at least. You do usually get to eat more normal foods again, though taste and spice and such will take time to adjust. I had a great speech therapist who worked with me once the radiation healing was done and I was off the feeding tube and such ... she had exercises for swallowing, for the tongue, for the neck ... massage techniques for the neck ... all sorts of good stuff. I only had a partial neck dissection and no trache, so that may change how they approach therapy, but they should have something for you as you improve.

((hugs)) You found a GREAT forum ... I know they've kept me going through some tough times!

KristenS - thank you so much for replying, it’s hard to hear that swallowing might never become mindless again but good to know it does at least improve.
I had a wonderful speech and language therapist whilst I was in hospital who taught me how to swallow again after the surgery so I will try to get in contact with her again.
My chin and neck are still very swollen, hard to the touch and stiff - i’ve been asking about massage techniques for ages as I’m terrified it will become/is a lymphodema but they keep telling me I have to wait?. I do massage it a bit each day whilst putting on vitamin E oil for the scarring.
It’s very hard to keep positive all the time although I’m certain it has helped me get this far but some days you just can’t help but feel down. Thankfully I’ve found this group so I don’t always feel so alone in my journey.

Hi JujiLow,
I'm a newly diagnosed OC patient with a T4 tumour in my tongue. I'm also in the UK (within the M25) and also a young patient (39) with a similar history to you (light smoker, even lighter drinker, female)

I've only just started my treatment and am on 2 doses of immunotherapy before I head off to have surgery at the end of August where up to 2/3rds of my tongue will be removed and replaced with a free flap, not sure where they're planning to take it from yet but I'm liking it from my leg if I get to chose.

Anyway hello here, sorry to meet you in such cruddy circumstances.

Hi again Dizz_zzey,

Yes I’m sorry we have to meet in such difficult circumstances but thank goodness for this forum as it definitely helps a ton to know there are so many others in the same boat and I wish I had found it sooner! If you don’t mind me asking what is your job? If you tell your surgeon and team that your hands are your life then they should definitely give you the option of having the graft taken from one of your thighs. As far as I understood it, they normally only do the thigh as a back up, meaning they will first try from your forearm and then if this doesn’t work they’ll take from the thigh unfortunately leaving you with two wounds.

From what I can tell, quite a few people have struggled with the wound sight on the forearm, some even saying that the graft there is worse than the wounds in the mouth in terms of healing. I would be interested to hear from anyone who has had the forearm graft and if possible see what their scar looks like??

Like I mentioned above, I have had absolutely no issues with my thigh whatsoever and have even come to like the scar on my thigh, i wanted to attach a photo of it here but don’t have a url code for the photo so if you are interested to see it I will try and send it in a private message. it is definitely larger than a forearm scar but I’m not really one to show my legs much and even if I do wear shorts it doesn’t bother me, it’s a wavy line running all the way down the front of my thigh with a dot where the drain was above my knee, I’m a creative spirit and love that it’s not a straight line

I was never given the option for the immunotherapy so I’d be interested how that goes? I was in theatre having the surgery which took 9.5 hours within 3 days of my diagnosis so it all happened extremely quickly for me and i didn’t have a moment to think about it as was in shock. One bit of advice I would give you is don’t give the morphine button back until you are completely certain you don’t need it any more, they want you to come off it ASAP so will be pushing you for that BUT I found I gave it back too quickly and really struggled for a couple of days afterwards and the nurses refused (mostly weren’t allowed) to give it back.

I have heard nothing but good stories about the Royal Marsden (sp.?) I’m so happy you went for a second opinion as your first treatment plan sounded very harsh and a bit over the top. Good Luck and keep up the good spirits as that certainly works wonders when it comes to healing. I too have a wonderful support network of friends and family and whilst they won’t always be able to understand our struggles, being able to have a giggle and make light of the shitty situation does keep you going. My boyfriend is fantastic at gently teasing me about my wonky voice or how long it takes me to eat three mouthfuls, for me this helps and even if momentarily makes me feel normal again.

Welcome to OCF, JujLow! Congrats on completing rads!!! Im sure you have endured many challenges to get to the finish line. The Recovery phase can be a long frustrating one! As patients, nobody can ever recover at the pace or faster than they think they should. The younger someone is the quicker the will bounce back. Of course, theres exception to everything and everyone is different so results may vary.

Being 6 weeks post rads, you still have a long way to go in your recovery but the worst is behind you. Rads is progressive and will continue working well after the treatments have ended. My doc said it was one month of recovery for every week of rads. But many, myself included found recovery to be a long road with ups and downs. It takes OC patients 2 years to completely recover after rads. Anyone who has lost weight will also contend with strength and muscle loss which is from not taking in enough calories. Thats another major struggle for most patients, relearning to eat after rads. Here in the US for at the very least patients should take in 2500 calories and 48 -64 oz of water every single day of rads and the first year afterwards. If losing weight with those calories then it needs to be increased to 3000 or more depending on someones activity level and metabolism. The more thats lost the harder and longer it will be to recover. With how hard patients bodies are working to eliminate the cancer and rebuild themselves, calories are burned up at a much faster rate than usual. Ask your doc about adding high protein whey powder as protein speeds healing and may help your recovery be a little easier. Focus on getting the most our of every swallow and every single day thru-out the day take small sips of water. Many OC patients will require barium swallow tests to ensure they are swallowing properly. The swallow muscles will begin to very quickly forget how to function together when not being used for even a few days. The worst of everything is in your rearview mirror! At 6 weeks post rads you will start having more good days than bad and the annoying thick gunky mucus will go away to be replaced with dry mouth phase which last for a very long time (well over a year or more). When tired, sleep and one day you will notice the overwhelming fatigue has slowly disappeared with only an occasional bout here or there. Sounds to me like you are really doing great!!! Keep pushing those daily calories and fluids and the better you do with your intake, the easier swallowing and everything else will be.

Im pretty sure people in different countries eat many different foods but the list still may be somewhat useful to you. Best wishes with everything!!!

List of Easy to Eat Foods



PS... @JujiLow.... Please do not post photos of graph sites or other images on the OCF forum. I have interacted with thousands of OC patients/survivors and caregivers over the years and most do NOT have any problem with their graph sites healing. For the OC patients who have a graph from surgery prior to doing rads dont have any recovery problems (except for thinking its taking much too long).

[email protected] had both graph sits taken from my legs and my arm. Im right handed and the graph was taken from my right arm. Both areas hurt for a while and both healed so there is no pain at either area years later. Functionality is almost the same as before I had cancer so using the arm really is ok. Thats how most patients in the US have it done. To be perfectly honest, in the whole scheme of things appearances do NOT matter! Whats most important is survival and anything else pales in comparison. At least thats how someone who is permanently disfigured from OC sees it! Yes, I frequently go out in public amid the rude stares and do not attempt to cover up my battle scars or bring further attention to myself even though many people already know who I am from my participation in various campaigns.

@ChristineB - Thank you for the list of foods. Very helpful. My go-to food is mozzerella cheese and chunks of salami with some tomatoes. I'm enjoying this until my surgery

@JujiLow - I'm a recruitment specialist and trainer for menswear company Charles Tyrwhitt (we've a store on New Street). I need my hands to type up training, contact candidates etc. I don't mind the scars at all as when I was 12 I fell through a window and severed my right hand internally. I have 5 inch scar on my right arm, a 4 inch scar and a 2 inch scar on my left arm, plus little ones on my fingers. It took me 6 months of physio to get the strength back in my right hand. That's why if I can avoid having my arms used for my free flap, I'd appreciate it. I'll chat to my specialist.

Im glad to hear you are eating your favorites prior to surgery!!! We're all wishing you all the very best with everything you have coming up. Im sorry but I cant quite remember if you were the newer member who has lots of people supporting them thru everything? If not, try to round up as many as possible. Its a good plan to get someone to stay with you around the clock while you are in the hospital so they can be your voice. Even if you are sleeping, the medical team still will do whatever they need to for every patient. Unfortunately details of all patients arent always remembered or noticed by everyones medical team so dont be surprised if someone asks you questions expecting you to answer after the surgery. Hospitals in the US usually do not allow patients visitors to stay after visiting hours but in this situation most will bend the rules and still allow someone to stay with their patient 24/7 during their hospitalization. Thats where friends and family become vitally important to have!!! Asking a handful of your closest friends and relatives to take "shifts" of staying with you will be a huge help in making the hospital stay much easier. The helpers can interact with the medical team and speak up to ask for pain meds if you are hurting. Another good plan is to ask your doc the day of surgery when they first check you out to prescribe 2 different pain meds so you can swap between the 2 if experiencing alot of pain and its still 2 hours until you are due to take the next dose of pain meds. Not all patients get the pain pump to control their own pain meds. Being in pain does NOT do anything positive for any patient!!! Its actually something thats very negative on the patient causing unneeded extra stress on someone fresh out of surgery. In the US theres a major trend to do away with pain meds asap. Your situation is different! Having a major invasive surgery, its ridiculous to expect any patient to not be in pain for at least the first week or 2 after surgery. Controlling the pain will help you to recover.

Many patients do not remember all the details of what they went thru while hospitalized and the details become blurrier as time goes on, replaced with more current medical concerns. Patients can be especially loopy after surgeries and should not be left alone for at least the first 24 hours after surgery. My poor 17 year old son was who I relied on after one of my outpatient surgeries. I was not in control of myself at all and barely can recall anything about asking my son to take me shopping then to purchase quarts of italian ice and a couple other strange tasks on the ride home after surgery. I spent a considerable amount of time and money wandering thru my favorite stores "shopping" while looking horrendous with my mouth and face still too numb to notice I had blood running out of my mouth, down my chin and was on my clothes. Anyone who witnessed this was probably shocked, especially children. My son was being his usual agreeable self following me around doing whatever I asked. Im thankful he never left me out of his sight, ensuring my safety and not doing anything harmful besides to my wallet by spending several hundred dollars.

I am the newbie with a huge support network. I'll let them know about visiting and being my voice. Someone has already kindly given me a A4 sized whiteboard, with a keychain attachment so that I can secure it to my bed, so that if I'm on my own in hospital I can communicate.

I'll speak to my surgical team about visiting hours and how many people I can have at a time. Work is 20minutes away from the hospital and they all want to visit and allow my husband a break too.

My med team keep telling me to take ALL the pain meds so I am doing just that.

When I'm out of hospital my husband and I are having a week together to get into a routine. My mum is going to come for a few days the following week and then the rest of my family and friends are going come over when I ask them to.

I've got a few mates on 'appearance watch' so blood dribbles etc lol.

It's still overwhelming, but coming on here everyday going through old threads and understanding as many possibilities is helping. I'm writing down questions and making lists of things that'll help me through my recovery.