Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Treatment finished

Abrn
Posted by

Hi.

I'm currently 5weeks post treatment. 

I thought I was doing ok but lately it seems to feel likan uphill battle as I'm struggling to get rid of thrush. 

I was managing to eat more orally and now I'm back to putting more supplements down the rig. 

I woke up this morning and felt defeated as its still here and I'm still battling with it.

Any different coping strategy would be very welcome 

KMJ19
Posted by

Well done on completing your treatment! 

5 weeks is still extremely early days and you must be kind to yourself. 

I had a peg inserted and I absolutely loathed it from start to finish - I had it removed on 15th Oct 11 weeks post treatment. If you can, try to keep telling yourself that it's only temporary and a crucial part of your recovery. Don't view using it as a defeat/loss - it's there as a back up. 

Is normal to be up and down with eating and again it's really early days. 

Good luck

Abrn
Posted by

Hiya 

Thanks for your reply I know I'm beating myself up and today I have had a good day.  Ive had it with waiting until the thrush goes away antibiotics don't seem to be working . So today I made sure my mouth was nearly numb with the mouthwash and I managed to eat lunch and dinner  chicken soup and omelette .

Sometimes when I'm using the rig for my meds I know I still need it but can't wait until I don't .

Now I'm starting to struggle with the waiting until the date for my pet scan .

The mind is a powerful tool when it starts to wonder .

For now I'm trying to learn to take the good with the bad days 

I'm not a patient person but I'm trying. 

Ps I tried natural yoghurt and it still didn't work 

KMJ19
Posted by

You are doing wonderfully! 

Unfortunately,  I think anxious waiting and good/bad days are now firmly embedded in our lives. 

I've just had my post treatment pet scan so understand how you are feeling. I was warned that mentally/emotionally this time (from about 6 weeks post treatment) is the worst and I fully agree. 

I'm quite impatient too, hence the early removal of my peg. It was really impacting upon my mental health and luckily I found a sympathetic dietician.

Try to take each day at a time

 Best wishes xx

KMJ19
Posted by

You are doing wonderfully! 

Unfortunately,  I think anxious waiting and good/bad days are now firmly embedded in our lives. 

I've just had my post treatment pet scan so understand how you are feeling. I was warned that mentally/emotionally this time (from about 6 weeks post treatment) is the worst and I fully agree. 

I'm quite impatient too, hence the early removal of my peg. It was really impacting upon my mental health and luckily I found a sympathetic dietician.

Try to take each day at a time

 Best wishes xx

chris2012
Posted by

Hi Abrn, you are still at very early stages of recovery so please use the PEG as much as possible as your normal eating will come back with time, especially if you have thrush. By doing this you are giving your body time to recover after the treatment, i remember going through the same after my first cancer as i was struggling to eat or swallow so i used my PEG until things improved. I'm sure you will see signs of improvement very shortly. All the best .

                                                                              Chris .

Its sometimes not easy but its worth it !                Click here to find out more

Hellebore1
Posted by

Just a thought - if you have a while yet before scan is due, why not contact your H&N nurse and ask to see a Macmillan counsellor, if available. Or you may even be able to self-refer to an appropriate counsellor. I did this and found them to be immensely helpful when I was going off the rails with worry about recurrence, treatment not working, terrible side-effects etc.

The Macmillan counsellors in my unit have “crisis” slots available  every week to see patients who are struggling. Worth asking, it was one of the most valuable things I did.

Hilary

KB21
Posted by

Hi All,

I'm 8 weeks post RT and I'm starting to get those anxious thoughts about things not healing or getting better.

I haven't had to have an NG tube or PEG but since about week 5 of my RT I've been on liquids only. I'm still on them now as the inside of my mouth is still so raw and painful. My tongue is also rubbing on my teeth thanks to the swelling, which is making everything even more painful.

It feels like a very long, dark, road to recovery at the moment and nobody seems to be able to give me a timescale of my recovery.

I would love to hear other people's experiences, it reminds me that I'm not alone xx

RadioactiveRaz
Posted by

Hi 

you aren’t in your own I am 15 month post radiotherapy for tonsil cancer and yes recovery is worse than treatment I am sorry to say in many cases. 

Pour mouths have taken the full brunt if everything I liken it to be taken back to a baby’s mouth ,for now just keep on soft things or in my case I was using Ensure high calorie food supplements , trying to keep eating 2000. Aloeies a day was nigh in impossible without them 

I kept a detailed record if liquid and food m plus a little gentle exercise if onky a walk to end if the street then next day a bit further 

look at my blog for other tips if you want k it will get better but takes time .

Hazel x

Hazel aka RadioactiveRaz 

My blog is www.radioactiveraz,wordpress.com.

i give a honest account of my experiences with tonsil cancer