Hi,
I'm 8 weeks post treatment for tonsil cancer now and have a couple of random questions about pain relief and oncologists.
I know everybody is very different, but when it is appropriate to start reducing pain relief? I told my SALT @ 3 weeks ago that I had tried to reduce morphine and he said 'oh no, not yet, we wouldn't expect you to reduce it until at least 3 months. Then I saw oncologist week before last and he was surprised I was still on as much pain relief???. So, I am reducing morphine again this week, but my mouth is getting more painful again. The ulcers go then come up somewhere else, they've been bleeding a lot the last few days and the split in my tongue is bleeding today...it doesn't help that I'm on warfarin! I never had to be tube fed and have managed to eat (kind of) ,I'm now back to a crumpet for breakfast to try to get rid of the gunk at the back of the throat, then fortisips for the rest of the day. I tried something 'proper' just now and managed @ half a portion before it got too sore.
I'm not generally a wimp and have a reasonably high pain threshold, but I'm confused now as to whether I should stay on the higher dose a bit longer. I'm on 10-20ml paracetamol x 4 and 5ml morphine x 4 ( which I have got down to 2 x 2.5ml and 2 x 5ml...which I don't think is a lot anyway?
My other question is the oncologist said at the 6 week check that he was discharging me from his care and would be seeing ENT going forward. I mentioned this to Macmillan when they rang a couple of days ago about the buddy service and he said he was surprised the oncologist had discharged me at this time. I may have misheard him as he has a very strong accent and a face mask so I couldn't lip read. I must admit I thought I would have to see him for years.
It's all a mystery to me, as I've mentioned before, I have had no support from the hospital. All that is left of 'my team ' is the SALT. No nurse since before treatment and dietician left 2 weeks ago ( not that I had seen her more than twice anyway).
I've been reading through other posts on here and I'm now wondering if I'm jumping the gun with the pain relief and should listen to SALT and not oncologist? Like everybody else, it's 2 steps forwards, 1 step back. The exhaustion is so random and can fool me into thinking I'm getting better, then I crash for a few days. I live alone, have no friends that live nearby, so it's just me and my animals trying to do the best we can, so the tired days are hard!
Sorry for going on, hope it makes sense 
Thanks
Linda xx
Hi Linda. I would listen to your body. Lots of people were on cocodomol which is an opiate as well It was no good for me so I stuck to paracetamol and morphine and like you reduced the morphine slowly first.
You are still early in your recovery and the tiredness that comes crashing down is radiation fatigue. It will get better.
I find your allied health professional support a little worrying. Have you a contact number for your clinical nurse specialist? I’d be messaging her.
As for discharge to ENT that’s actually par for the course these days. I’m lucky in that I’m still in the care of my oncologist but then I was treated before Covid
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Dani,
I don't have a specialist nurse, the one they allocated to me and I saw twice pre treatment left before RT started. I saw nobody during treatment apart from oncologist every week and dietician once. I have a few numbers of other nurses, but to be honest I'm tired of having to battle everyone and don't have the energy. GP has been less than helpful as have the chemists at times. So, I just take my meds, sleep and eat when I can. I try to get things done on my good days, voice permitting .
Thankfully my critters are really good and patient with me, even though my 'alarm cat' insists on going off at @ 6am. 
Thank you
Linda
I don't have a specialist nurse, the one they allocated to me and I saw twice pre treatment left before RT started.
Cripes! Get onto your oncologist ( I know he’s discharged you) but it seems they are trying to replace proper post treatment care with a buddy service. Is this Macmillan? Your nominated CNS might have left but the department will still have one or more.
Nobody, let alone somebody living alone, should be abandoned the way you have been
I would also contact the Macmillan helpline to see if they can do anything for you. Would you like me to contact them to reach out to you?
I know you’re tired of chasing but you’ll need some sort of access in the years to come.
At least you are here. There’s a wealth of help in this community and we will be here to help where we can.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
patient with me, even though my 'alarm cat' insists on going off at @ 6am.
I had a cat who would creep ever so gently onto my chest in the mornings and purr quietly at me. The minute I opened my eyes he’d bat my nose. I had to lock him out in the end. 
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Dani, I self referred myself to 'Join the Dots' which is run by Macmillan and they referred me to the Macmillan Buddy service. I have spoken to the lovely man who organises matching buddies with patients and am expecting a call from my 'Buddy' soon. He also was surprised about the lack of care and advised the same as you. He also offered to chase them up even though that wasn't his role. So a massive thanks to him and to you Dani. I have got the telephone numbers of the other CNS but haven't got a reply yet (my fault as I didnt leave a message.) I usually find the answers to my questions on here
My voice doesn't always work so phone calls can be hard work sometimes, but I will chase it up. I have an appointment with ENT in 4 weeks, might wait until then. Its exhausting when there's nobody to make me a brew, fetch me a meal , feed the pets or walk the dog etc, without having to chase up nurses, dentists, GP to try and get the meds I need and chemists that don't answer the phone because they are so busy and I have to go and collect meds! Phew, wore me out saying it haha.
Thank you so much for your help as usual. I don't know what's supposed to happen until I read something here. I will get there, just at my own pace after a nap 
Thank you
Linda
Hi Debbie60,
I'm glad it's not just me. When taking the full amount , I think it's getting better, it's only when I've tried to cut down I've realised its not! My SALT made me feel better but then the oncologist looked so surprised and said 'really, you're still taking all that', it made me doubt myself.
I think it's such a hassle getting them, I'm super keen to stop. Must be more patient!
Thank you
Linda
Hey Linda. You take care of yourself. We are always here when you need us. Xx
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
