Not coping with pain

Hi there Warrior. Rant away! We’ve most of us done it at one time or another in here! The chemoradiation isn’t as scary as it sounds. Yes, it gets painful from about week 3 onwards but it’s usually gradual. It then begins to subside about 2 weeks after the treatment. The lymph node surgery isn’t as painful as the tonsillectomy, although to be honest I had them both done together. Lots of others will chime in to reassure you too, and they will be honest. It’s not easy but it’s manageable and it is life saving. Also, you will have an experienced team of medics with you at every turn. So please use their expertise and our experiences to help you through it. Wishing you all the best, M

Hello. I had bilateral tonsillectomy, part of tongue removed followed by 6 weeks of chemoradiation for tonsil & lymph node cancer. I am now 1 year post treatment. The pain was excruciating after the tonsillectomy. All I was told to take was paracetamol. I definitely could have done with something stronger. I drank iced water constantly & found baby fruit puree (apple/pear) to be soothing straight from the fridge. The pain from my tongue presented as constant earache. Noone could help me at home as the day I came home after surgery my husband & children all tested positive for covid & were really unwell. I just took soluble paracetamol on schedule, slept whenever I could & gradually the pain eased & I made myself eat more. I had a PEG fitted prior to treatment & used it from week 4. Yes treatment is very challenging, but there is a whole community here who have got through it & can support you. We have all paced the floors crying in the lonely early hours. You are not letting anyone down. 

Thank you so much for your reply 

I'm really grateful for letting me know your experiences.

I've just got to get over this stage and move on to the next. it's been tough so far 

Best wishes to you MarkEL

Hi Warrier, there is no need to apologize and you don't sound like a child, you sound like someone who is in pain, and needs help, you must let your team know how much pain you are in, then hopefully they will give you the pain killers that you need. Have a rant whenever you want to and ask any questions you have. We know how you feel and will help as much as we can. 

Regards Ray.

Thank you so much for sharing your experience.

I really felt like my pain was abnormal as it's unbearable. I spoke to the head and neck team and they said it is normal.

How you coped on just paracetamol I have no clue.

You have helped very much.

Best wishes Blod

You are v welcome. Feel free to ask anything  anytime

Thanks Ray

It's such a relief to know there are people who can listen and say it's ok 

I thought I was stronger than this. Thanks for listening

Best wishes

You are strong and you will get through this. We are all here to listen and help when we can.

Hi has the others have said you’re not a baby. We’ve all cried and paced the floor. I’m almost 5 years post chemo radiation for tonsil cancer. Usually the pain from tonsillectomy goes around day 12  the others say. I didn’t have neck dissection I had biopsy on tonsil then chemo radiotherapy. It’s not easy but keep on top of pain medication ask on here any questions. As for your weight your team will keep in eye on you. Rant away  we never judge as we’ve been there done it. 
good luck with mdt. Pop on as and when you can. 
Hazel x

HI Warrior1.  Rant away. We are good at listening.  I've had 2 tonsillectomies and neck dissections.  You are almost through the pain now.  A few more days and you will wonder what it was all about.  A bit late, but I found that if I could take some paracetamol around 30 minutes before I wanted to swallow food that worked for me.  The pain may increase in the next day or so - that is the scabs coming off from the tonsillectomy.  After that happens it will be bliss.

All I can suggest for the dry mouth is swilling some water at this stage.  I sometimes still have to do that after nearly 3 1/2 years during the night.

As to removing the lymph nodes...  That is a walk in the park compared with a tonsillectomy.  You will cope with that absolutely fine.