Hi guys and girls
It's been a while since I posted but I think I just need to vent.
Paul isn't doing great - he rang the bell back on 3 Jan from radio and chemo and to say it's been hard since is an understatement.
His diagnose was T4 N1 M0 P16+ right tonsil - now we haven't looked any of that up but just from what the Oncology doctor kept saying to us last week when Paul said at his six week check up about how bloody awful he feels we guessed that it's not a good diagnosis because the doctor kept saying " Well it's a large cancer" in his Italian accent!
Paul has this glue like substance in his mouth which he keeps having to hack up and spit out - Doctor said well you need to nebulise 6 times a day - it makes Paul feel sick. He's on anti sickness because he's barely eating anything and by that I mean feeds as he's got the RIGG and it's not helping right now because when he tries to put some through he can constantly taste it at the back of his throat and again makes him feel sick.
He'a now at least two stone down to what he was before he started treatment. He looks gray and gaunt to me.
They have moved his ENT Head and Neck team appt forward from 20 March to Thursday this week because we are so worried about him.
At the oncology appt last week the doctor then told us that when Paul has his 3 month MRI because his cancer was so big that the MRI might or might not show up something still there or may not (brilliant) in which case we need to wait another 3 months to have another one - no compassion to the fact that then puts even more stress on Paul and I worrying that he might still have cancer!! This doctor has the bed side manner of a tarantula 
He's just completely broken down on me this evening and I'd only just walked through the door 20 mins beforehand from work.
I've had to make the decision to go part time to only 3 days a week at work because I feel he needs me at home which then puts financial pressure on us because as you can probably guess PIP are 
ng next to useless right now. He had a phone assessment about 3 weeks ago and he got a text yesterday saying that they haven't made a decision as yet but when they do make one we will get told ♀️ . We have only just managed to get something from UC and that just about covers the Water DD a month (better than a kick in the you know what's but not going to go far at the moment!)
He's now worried that he isn't getting better because of his bad he feels - not eating so zero energy. Hands and feed freezing no matter what he puts on them. He's trying to nebulise but the stuff that goes in it is salty so makes him feel sick as I menrtioned above.
He goes from being constipated to having the raging trots (no rhyme nor reason to this) he's hardly taking any morphine now because it bunged him up so badly he had to have an enema to try and help. That was a very difficult 10 days!!
It's all a lot right now 
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I’ll add a few bits to Hazel’s excellent reply
IGG and it's not helping right now because when he tries to put some through he can constantly taste it at the back of his throat and again makes him feel sick.
Ask about drip feeding slowly via pump overnight.
If he gets some nutrition into him he will feel better.
This doctor has the bed side manner of a tarantula
No defending him but these guys deal with death every day and go home at night to try to have a family life only to go back to work the next day to start all over again. It’s self preservation to not get involved. There is no sugar coating cancer. He’s right a scan at 12 weeks is likely to show up inflammation. My oncologist told me they would like to scan at six months but that puts undue pressure on the patients.
He's trying to nebulise but the stuff that goes in it is salty so makes him feel sick as I menrtioned above.
Try boiled plain water rather than saline or even simply steaming over a bowl of hot water with a towel over his head
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
