Hello,
I've T1 N2a M0 Base of Tongue HPV Positive cancer. Had a partial glossectomy & selected left neck dissection mid December, both of which healed very well save ongoing lymphadema in my neck.
Had a 2nd tongue op on Tuesday to try and clear the tumour margins. Stayed overnight in IV fluids, pain meds & steroids and came home feeling fine. But now I'm struggling to keep in top of the pain, nothing is touching the throat pain, I'm constantly spitting up phlegm & choking with a feeling of something blocking my throat. It's making eating almost impossible to eat & is aggravated by how swollen my neck is, which feels like the swelling is constructing my throat. Tongue all frozen snd numb like after first op and I know that takes time.
Im on paracetamol, narproxen, OraNorm & gargling with Difflam but this has the third day round the clock misery. Do you think the block feeling in my throat is scabbing? It feels like hanging wallpaper! Don't know what to do snd starting to feel a bit panicky. Also feeling giddy from not eating.
all suggestions gratefully received. Thanks, Wryneck
Hi Wryneck. I had similar to you, my two operations were done robotically. I felt like I was choking, and even if I tried to speak I was gagging. I was convinced I was going to choke, constant phlegm and mucus coming up, and I found it difficult to eat and drink. It does get better, the scabbing came away with gargling diflam and salted water. I managed with ensures with extra gold top milk to thin it out, just after the operation, it was all I could manage. The good people on here advised me to keep on top of my pain meds, and assured me the feeling of my tongue being too big for my mouth would settle, it just takes time
Thank you. The last op was hard but I don't think I've ever felt as lost as I do right now. I'm literally sat up over a spitoon drooling & choking. If I move my neck in anyway it feels as though my throat shuts up with something sharp blocking it. It's feels like sharp paper folded and it stretches across my throat. I'm gargling as much as I can but I've stopped eating for now because I've been very sick a few times now and I think I really will end up aspirating food at the moment.
The mouth retractors bashed my teeth & scraped my upper palate last time and again this time - one of my front teeth is wobbly and painful with the bottom edge all chipped.
I am feeling really, really alone and sorry for myself today. Please God let this be the end of treatment because the way I feel today I really wouldn't have the chemo/radiation. I just couldn't.
Hello, Wryneck - my surgery was different from yours but I just want to send my sympathy and support whilst you are experiencing one of the worst post-surgery stages. I know how utterly miserable it is.
My operation was neck and inside mouth, and I recall the point at which I couldn’t eat properly and the wounds were swollen, leaking and dripping and I felt that I was just a mess and it was all almost beyond endurance.
Things will get better and you will heal, it’s just a case of hanging on in there and getting through the darkest hours. Sending you warmest best wishes. Cathyxx
Thank you. It's very bleak - no choice but to Deal with it. I've been sat here all day now choking and spitting. I'm sure that it will pass but I'm exhausted.
I was lucky the surgeon removed all the cancer I didn't need radiotherapy or chemotherapy. I remember sitting in my hospital chair crying and feeling awful, because I was making such a noise bringing up the mucus, and constantly feeling like I was going to choke to death. A lovely nurse came and sat with me, and I said I wish I had never had this done. I felt out of control scared, and utterly miserable, she told me in a few weeks when things started to settle and heal, I would feel differently, and she was right. I couldn't see it at the time, I then felt ashamed because there are people who have gone through worse. Kind people on here comforted me, and gave good advice, because they have gone through the same or similar. You are not alone, someone on here will always answer you. We are all in this together. Once you are on the road to recovery, I'm sure you will be able to see the Hospital Dentist to sort your teeth out. Try and stay strong, try to eat and drink to keep your strength up. Its been 51/2 month since my operations, and I can eat anything now, much slower and have to chew more, but I have got here, and so will you.:) Speak to your team if you are worried about anything, they are there to help and support you.
Thanks for replying. I don't have a team. I don't have a nurse or anything. I have got the experience of recovering from the last op so I understand logically that things will get better. But I didn't have this choking & I'm literally just trapped with my head hanging over a jar waiting for that to pass. Anytime I try to lay back or get up I just choke - from whatever is inside my throat and from the pressure from the neck swelling outside. If it doesn't go, if it gets worse the only thing I've got is 999. Thanks for your positive words. Who was your team?
Team usually means your clinical nurse specialist at the hospital where you had your treatment. Have you a contact telephone number on either your discharge notes or your pre op instructions? You could ring the ward where you were operated on
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Do you not have a designated cancer nurse, or a speech therapist, you should have a number you can ring for support. What about your consultant are you able to contact him/her. I have the same nurse I was assigned on my initial diagnosis. I well remember having my head over one of those paper sick pans in the hospital, thinking when is this going to stop. Can you ring the ward where you had your operation for some support .
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