End of week 2!

You are doing very well Jane, keep on top of any pain, do not suffer in silence, Oramorph and MST Continus helped me get through....not everyone gets all of the side effects...

Take care

Peter

Thanks Peter, I’ve only been given dissolvable paracetamol at the moment. I’ll speak to the team on Monday. I did mention the dry mouth today and they’re prescribing me some kind of gel to collect on Monday.

Biotene gel helped me....cancer triage ward also gave me some gel in sachets ...both helped....

I was 68 at the start of treatment...used to play games on an old Nintendo DS...Scrabble...Golf...Football etc...felt a bit silly but it kept me occupied.

Hu Jane. I did exercises regularly and still do 7  years on. But no I didn’t do them hourly I did 5 or 6 reps  a day often in the car going to my treatment. I like you had early mornings for the same reason it left the day free and my hubby drove me every day my journey was up to 90 m)no traffic dependent so I would  sit there in car doing the exercises. 
keep doing what your are  doing the salt water bicarbonate was what u also used. But as my ulcers on side id tongue got worse I was given gelclair to use.  
Dry mouth carry a small spay bottle with you just plain water as that helps in day time ( keeping mouth moist at night time I became an expert at sipping water practically asleep whilst doing it.) I still use xyimelts as dry mouth can stay around its ine if iur kong lasting side effects. You can try xyimelts I couldn’t  get on with them during treatment but worth a try. After treatment finished i could  use them again. 
I was  given biotene gel during treatment for dry mouth at night it was ok but made ulcers hurt more vicious circle. Keep on top with pain killers the paracetamol if you are taking them  as pain appears maybe try taking them by rote ie

 2 tablets as directed throughout the day. By end if week 3 I was in co codomol then added oramorph that was taken as directed the idea being cancers bad enough cancer and pain not acceptable so it was a case if keeping in top of pain and not  chasing it. 
good luck for week 3

hugs Hazel 

Difflam...MY GP prescribed a generic Difflam spray...Benzydamine HCL...the spray mechanism screwed off allowing me to refill to any solution strength needed...I could then direct the spray to specific areas of pain...still use it now

Hi Jane, I had the PBM therapy as well, and didn't suffer the mucositis symptoms that many have.. as for pain, I was eventually on paracetamol every 4 hours or so... zomorph morning and night, and oromorph as and when I needed it.. talk to your team if you feel you need to ramp up your pain meds.. and ramp up your laxatives as well.. morphine will cause constipation, so this is really important

your salt and bicarbonate mouthwash, and moisturising routine sounds good.. I did jaw/swallow exercises when I cleaned my teeth.. just seemed like a logical time to do them..

try and use a baby soft toothbrush if brushing is becoming painful, and use Oranurse toothpaste.. it doesn't contain SLS, which can irritate.. 

the first sign that you are struggling to eat, sort out a pump and be prepared to pump feed overnight.

you are nearing the danger zone now, so just concentrate on each day as it comes. 

We are all bit different, but I didn’t feel too bad until the treatment had ended. That said I was on paracetamol and ibuprofen 24/7 by Wk.3 and using Difflam to help eat (I didn’t have a RIG).  A week after the end of treatment things suddenly ramped up and I was given slow release morphine (MST) on top of the painkillers with Oramorph for any breakthrough pain. They also gave me Oxetacaine to numb my throat before eating. I have to say that when it was at its worse the MST and Oxetacaine, which were both prescribed by my GP, were real game changers and allowed me to carry on eating. It might be worth discussing these with your doctors well in advance as, for me at least, the pain came on very suddenly and it took me a day or two to settle things down.

Good luck with your treatment. It sounds as if you’re doing fine. M

Thanks Mark that’s really helpful. I’ve been told that I shouldn’t need a feeding tube as the radiation is only on one side but to expect eating to be very difficult in the last couple of weeks. I’ll definitely get in touch with the GP before I finish. 
regards

Jane

Yes, mine was on one side too. And yes, eating gradually became more and more uncomfortable towards the end of treatment to the point that my only food was custard, made with double cream, and fortisips for a while. I found that I could never quite totally eliminate the pain but I could make it bearable with the combination of meds.

I’d also add that constipation is a very common problem too and will catch you if you’re not careful. I had crippling constipation on top of everything else a couple of weeks after treatment. It was actually the most painful and unpleasant part of the whole experience. Make sure you get a supply of OTC laxatives (Movicol, Laxido - they’re the same thing) and start taking them if you want to avoid this. If you do get caught then take the maximum dose of sachets allowed (written in the guidance on the side of the box) and all being well that should clear it. It goes without saying, however, that prevention is far preferable to the cure! 

Yes....constipation is a massive issue during treatment/recovery....needs to be well managed