Start treatment Monday 4/9

Hello. Take pain relief on schedule to stay ahead of pain. Make a daily ‘spreadsheet’ to keep on top of meds, creams, mouthwash, toothbrushing etc. Drink lots of water, hydration is v important. If you have a PEG use it! A silk pillowcase is lovely if your neck gets burned & sore. Rest, sleep whenever you need to. Don’t worry about household chores. Don’t feel you have to reply to every message, text etc - people will understand that you are off grid for a while. Get outside, even if only for a gentle walk round the garden. I found audio books good company when I couldn’t concentrate on reading. Cross off each day of treatment on your schedule -  I had mine on the fridge & it felt good to see the appointments shrinking to the final day of treatment. Be patient & be kind to yourself. This time will pass. Stick with the forum- ask anything & we will try & help. 

Thank you  good advice.  I haven't  started rt yet. Biopsy caused severe pain  then 5 teeth taken out causing jnfection, so have had 3 weeks if pain. Peg being fitted on Monday but will take each say as they come. Thank you all for good tips and help.

Hi Martie, I was in pain after biopsy, lucky with teeth, and was terrified of peg! All the prep is the worst bit, seems so much to process and all happens one after the other, once treatment actually starts it seems to be easier to handle, because you just focus on that last radio day. Good luck for Monday and remember like many of us in a few months it’ll all be over x

Hi Turi

Wishing you the very best. Just (1 Sept) finished 6 weeks of RT 5x per week + carboplatin 1x week.

Couldn't agree more about keeping lists. I have a spreadsheet with everything (exercises, teeth cleaning, meds, etc) write down and tick them off as the day goes on. I get v tired and my brain a bit mushy so need it written down to keep track.

For pain relief I went from nothing, through paracetamol, adding codeine, then replacing codeine with morphine. Now on paracetamol 1g 4x per day plus morphine about 50 mg total per day. And wash my mouth with soluble aspirin before eating. I have a RIG tube but haven't needed it (yet). Weight is pretty much exactly where it was 6 weeks ago. But, to be honest, eating is a chore. No taste, never hungry, and tongue can be sore. 

No side effects at all from chemo:)

We are all different I know, and I am not through the worst yet, but for me it has been unpleasant but not unmanageable, with a lot of help from the wonderful staff in Colchester.

Best regards 

Mike 

Thank you for your reply, it all helps, as it feels very much going onto the unknown. Really appreciate support. Xx

Hi turi I am new here so not sure what treatment you are going to have . I am a 56 year old man and was treated for HPV toncil cancer nearly 4 years ago . I had chemo and radiotherapy and am now cancer free . If I can help you in anyway by relating my experiences with treatment and recovery  please let me know  . Good luck with your treatment 

Hi Mike you sound like you’re doing great! Maybe us Essex people are made of tough stuff (I’m Billericay) did my time at Southend and apart from being as sick as a dog like you got through it pretty well. I think for all those people starting it’s just so scary, Once you’re in full swing of treatment the focus is just getting through. Well done anyway, your nearly there x

Hi Turi,

i had RT and chemo… you will be fine like us i am year after the treatment, didn’t have pain, but just focus… focus and pls exercise as that will help you… good luck and, take day by day…

love,

marta x

Hi Turi, I’ll be right behind you. Just heard today that I’m due to start RT in 4 weeks time. Good luck hope you’re ok today and it went as well as could be expected. 

Turi said:

Due to start treatment on Monday 4th Sept

How did the first day go, Turi?