Tonsillectomy 6 days time

No apology needed Avril.  Sounds like you've had more than enough to deal with!

Good luck with all your upcoming scans and appts.  Just shout if you need us.

Linda x

Hi Avril. You’ve certainly been through the mill Don’t worry too much about lymph nodes I had 7 affected lymph nodes. They are doing exactly what they shoujd be doing which is stopping the cancer cells spreading. I’m our lymph nodes are where the csncer cells go ti so it’s not technically a secondary cancer as it’s not spread to any other organ if that helps. The treatment is geared up to getting rid of them. It’s not easy but if I can do it anyone can. Stick with us on here we will help you as much as we can. 
Hazel xx

Hi there Avril 

im doing great thanks , had a thickly cough for a while and that’s about it tbh. Had my mash fitted and the pre radiotherapy scans done last week which were dead easy . I’m not even worried about having any eye holes cut into it as a felt fine . I start my chemoradiation on the 9th of March so enjoying the fortnight before it starts. 

Hi Peter,

Thank you so much for replying to me, I am having a full bodied PET scan this coming Monday and then on the Tuesday a X-ray first of my teeth/jaw and then followed by a biopsy of this ‘suspicious’ neck lump. 

Did anyone also have to be measured for a hat to wear during 8 weeks Radiotherapy please? I am scared of the radio in my mouth, the pain from the tonsillectomy was awful! My team are discussing about fitting a PEG feed before the treatment start. Has anyone got experiences of this or a tracheotomy please?

I really hope every single one of you are well.

All my love Avril 

Hi Gaz

 it’s great to hear from You and your doing great  Long may that continue (cross fingers) The felt hat? Is that the same hat I’m being measured up for? Presuming it protects our brains? So I’m having a PET scan Monday then a X-ray of my mouth before a biopsy an hour later from my neck. 

Avril x

Hi Linda, I’ll reply hopefully tomorrow x

Hi Hazel, You are amazing always here to help me and others. I’ll Sign in tomorrow and send you a proper teplu

 I’ll hopefully truly to your lock p

Unknown said:

Thank you so much for replying to me, I am having a full bodied PET scan this coming Monday and then on the Tuesday a X-ray first of my teeth/jaw and then followed by a biopsy of this ‘suspicious’ neck lump. 

Did anyone also have to be measured for a hat to wear during 8 weeks Radiotherapy please? I am scared of the radio in my mouth, the pain from the tonsillectomy was awful! My team are discussing about fitting a PEG feed before the treatment start. Has anyone got experiences of this or a tracheotomy please?

Hi Avril. It's good that things are moving fast now and you will have a treatment day soon by the looks of it. The hat you speak of ...do you mean a mask? Its to keep you still and in exactly the same place on the treatment table every day so that the radiotherapy hits the right spot every time. Leeds University Hospital has a video of one being made HERE.

Don't worry too much about it. It feels like a warm flannel being draped over your face and the radiographers talk you through it all the time. They will even hold your hand if you want some physical reassurance. I actually felt the whole process quite calming and comfortable. Its pretty hard and tight when it cures but that's the whole purpose of it. I asked to have eyeholes cut in mine because I'm nosey and like to see what's going on. Most folk say it reduces claustrophobia if you are that way inclined.

I didn't have a PEG before treatment started but lots of people do. it takes a few days to settle down and can be uncomfortable to start with but it does the job .I had a nasogastric tube place at the end of week three when eating became impossible and it was in place for 8 weeks. It saved my life.

I can't help with the tracheostomy as I didn't have one. I'm not quite sure why you would either.

Radiotherapy is tough but doable a day at a time. Unlike tonsillectomy you will get pretty potent pain killers to remove background pain. Most of us end up on opiates. I had long acting morphine morning and night and oromorph and paracetamol through the day. If you take your analgesics by the clock it's much better than chasing pain and not catching it. Opiates are constipating so you need laxatives and you'll be given gentle ones like Movicol or Laxido. You must take them. You'll get lots of different mouthwashes to keep your mouth as comfortable as it can be.

Yes tough but doable.

I'm three years out of RT and living a blissful normal life on our smallholding in Wales with the my family and my bees. Life is good and yours will be too.

Best wishes

Avril sounds like your team are on top of the tasks in hand.  I can't compare tonsillectomy pain with radiotherapy as I did not take radiotherapy in the end.  However, I think if you can make your way through surgical recovery you can handle the radiotherapy issues. 

Remember that very few patients have all the side effects.  I can say that in preparing for radiotherapy I had made the decision to have a PEG pre placed.  I had a long discussion with a friend of mine who is an A&E doctor and his advice was this was a good and manageable decision.

There will be many on here with experience of what you are heading into and they are better placed to advise.  Just hold onto the fact that the vast majority of us H&N patients go on to recover and have a good quality of life.

Hi avril 

I’ve had the biopsy on my neck which will be fine they just draw a sample off to test. I’ve also had the pet scan etc and you’ll breeze through that. Not sure where they think your primary cancer is, mine is one tonsil, so I had a biopsy on that too. If your being measured for mask then radiotherapy is obviously the plan, I’m just about to start my second week of chemo/radiotherapy so any questions please ask, I’m no expert but I’m a little ahead than you so am happy to tell you my experiences. Oh and I’ve had the peg fitted too before treatment started so know about that too, personally I found that a bit unpleasant but it’s settling now and judging by what people say it’s a life line. Good luck and stay in touch I’ve found this site so helpful xx