Pain after treatment

Hi jg

T2N1M0 tonsil cancer...chemoradio....no neck dissection

I finished chemoradio in early June 2023...August/Sept before any real improvement with pain....never had any issues with water blisters...takes quite a while for healing ....tongue still sensitive one year after finishing treatment.

Peter

Hi. Yes it’s early days for you. It’s a marathon not a sprint. We all get told similar timescales. I made a fairly easy recovery but still took a long time. My blog explains details below. 
yes water blisters on roof of mouth quite common. Baby steps  some days 2 forward  and one back. 

Keep doing what you’re doing you’ll get there. 

Hazel 

Hi Jg123, there is no real time on how long it takes to recover, it takes how long it takes, we are all different and recover at different times, having said that, I don't think there are many who recover in 6 weeks. It can be a long hard road to recovery, with lots of ups and downs on the way. You have to let your body heal itself, which takes time, so you have to give yourself the amount of time it takes. Stick with us, and ask any questions you have, we are all here to help. You will get there. 

Ray

HiJg123 

Jg123 said:

Does it take months for this to recover. 

I'm afraid it does. We are all different in our recovery but there is a trend. I had tongue cancer like you but no nodal spread on scans so I avoided any surgery or chemotherapy being prescribed six weeks of RT only.

It was six months before I felt I was well and a year before I really felt out of the woods with improvements continuing for a good four years. Are you eating? If you are you need patience in not trying  to be too adventurous and irritating your mouth and throat.

Jg123 said:

I started getting water blisters this week. They last for a few hours then burst

The water blisters are minor salivary gland ducts getting blocked. Pay them no attention.

Jg123 said:

My tongue always feels swollen and my cheek feels swollen and inflamed.

This is normal. Just make sure your mouth is as moist as you can get it. There are lots of saliva substitutes and gels on the market. It's just finding one that suits you. See what your SLT recommend. A good tip is to carry a pocket water spray with you to frequently spray your mouth. It's better than sipping water which flushes away whatever saliva you do have.

I found chewing gum helped my saliva no end. I couldn't stand mint but there are loads of other flavours. Make sure it's sugar free.

It's early days. Have 12 weeks in mind. You'll feel much better by then but it's always steps forwards and back

Hi jg123 They say these times but we are all different. I had base of tongue cancer and had similar treatment which is tuf . All these aliment usually pass after a certain amount of time. My advice to you is to start walking a little everyday. This will help your recovery. I had a neck dissection  later also and got discharged from the physio super quick as when I would be out walking I would be doing neck exercises looking left right up and down etc and would touch overhead leaves on trees with each arm. Still do the same a few times a week , Necks been as good as gold occasional intermittent pains , cramps etc but no big deal in the scheme of things. Get walking  I really think it saved my life All the Best minmax 

Hi minmax thank you. I have been walking since week after head and neck dissection. I'm a walker anyway. I normally walk 5 km six days a week before this diagnosis and I'm back to that again. I'm back at my yoga pilates and exercise classes which is brilliant. I just love them. The oncologist said as I was very fit before all this it would stand for me during my treatment. I am back to eating everything. Interesting about what might give me water blisters. Must work out what I'm eating on the days I get them. Plus great advice re water spray instead of drinking water. Although I do drink loads of water in general. Thank you. Any other tips would be amazing.

Thank you for all that great advice . You seem to have same diagnosis as me tongue cancer with no node spread. It was such a scary time. I still think it's like a bad dream. After the neck dissection I had RT seven weeks later which I found very tough. Even though I do my exercises I'm still very numb and feel very swollen. Especially in the am when I wake up . My speech still feels bit slurred with the swelling is this normal. Will the swelling on my cheek and tongue improve. So many questions from me but I appreciate all advice .

Hi Jg123 It sounds like you have cracked it and are doing everything you can to get back to normal fitness . Good for you. Regarding the neck dissection it's just a matter of time , the numbness can stay where the graft went which is no big deal . All the best minmax 

Jg123 said:

. Will the swelling on my cheek and tongue improve.

Yes. Keep at the swallow and jaw exercises. Make sure you get physio for the side effects of the dissection. It really does help 

Hi Jg123

I don't think I can offer much more than you have already been advised.  I am 4 1/2 years since first diagnosis and 7 months since I started treatment for the latest diagnosis.  That makes me almost 6 months into recovery and I recognise where you are right now.  The best thing you are doing is exercising.  Great for the body and mind.  All the rest will come with time and it will become a distant bad memory.