Advice please

Hi WinnieGirl Welcome to our community well done to your dad in almost completing treatment. It’s nit uncommon to be unable to eat tomorrow maybe get him or maybe you can  go with him as about upping his pain relief I was in 8x30 mg co codomol plus up to 40  mil oramorph every day. Presumably he’s seeing a dietician are they happy with his caloire intake m when at week 3 I was struggling i was immediately told I needed a n g feeding tube. If he’s drinking sufficient high calorie protein shakes up to in my case 2000 calories a day he may not need a feeding tube. The first few weeks after treatment are still difficult .plus if he is on opiates  make sure he is taking laxative usually laxido or movicol which should be prescribed. This article may help him  what happens when treatment finishes.

https://www.google.co.uk/url?sa=t&rct=j&q=&esrc=s&source=web&cd=&ved=2ahUKEwjn_rrb6af1AhUMV8AKHft1D5AQFnoECAIQAQ&url=https%3A%2F%2Fwww.workingwithcancer.co.uk%2Fwp-content%2Fuploads%2F2013%2F03%2FAfter-the-treatment-finishes-then-what.pdf&usg=AOvVaw2Zkfakgg8v4EVaxg1z3eUM

Hazel

Hi WinnieGirl and a welcome from me too. I’ve done a search for others who have had similar salivary glands cancer so you could have a look there and see if you can join in the thread. 
https://community.macmillan.org.uk/search?q=Parotid&group=100#serpsort=date%20desc

The next few weeks are I’m afraid the worst. I can’t give you medical advice but if your dad ends up not being able to take anything orally you must contact his team. Otherwise it’s a case of just plodding on. I was on oral morphine in the day together with long acting morphine twice a day. Once I got this I felt 200% better. Proper analgesia is key and he shouldn’t be in masses of pain. 
He won’t feel much better for six weeks and 12 weeks usually sees some sort of turning point. 
Sleep is ok. I did lots of that when treatment ended. The body needs time to heal. 
All the best. 

Hi WinnieGirl and welcome to the forum.

Pleased to read your dad is taking his pain killers regularly.  It's much easier to keep on top of the pain rather than reacting to it.  Along with paracetamol and ibuprofen I also had Oromorph plus laxatives!  Do make sure your dad is telling his team if he's struggling - they may be able to up the dosage/change his pain killers.

I didn't have a feeding tube either so struggled on with trying to get something down.  I was prescribed Scandishakes (probably similar to your dad's proten shakes) and managed to eat a little custard, semolina and Ready Brek - all full fat.  I was also prescribed Difflam mouthwash which helps to numb the inside of the mouth before eating and Oxetocaine and Antacid Oral Suspension which you swallow 5 minutes before eating.  This helps anaesthetise the throat.  I was also advised to ensure I took paracetamol or ibuprofen (in liquid form) 30 minutes before eating to ensure it was at maximum efficacy.  

Presumably your dad is being seen by a dietician or someone to check his weight regularly.  I was at the point near to the end of my treatment where they started making noises about a nasogastric tube due to the amount of weight I was losing but managed to maintain it.

It is perfectly normal for your dad to be sleeping a lot and this will continue for some time yet, as will the pain and difficulty eating.  

You absolutely hit the nail on the head when you say no-one can really appreciate what your dad is going through unless you've been through similar.  It's like nothing else!  It's great that you've recognised that (not everyone does) and that you're there to support him.

Linda x

Thank you so much for your reply, yes I believe that he is doing all the above.  I am not 100% sure on dietician input though so will be checking with Mum that he hasn’t gone under the radar in terms of weight loss.  

Sadly, I am supporting from a distance as am undergoing chemotherapy ( unbelievable timing eh!) which comes with its own undesirable side effects but I feel the treatment my Dad is having, that you have all had, sounds horrendous.  It is only through reading your threads that I can even begin to imagine.

xx

Thank you so much for your reply and useful information and reassurance.

Thank you for taking the time to reply, I will pass on the information to him.

I have just checked and he was weighed yesterday so assuming they are happy with his weight loss.

Xx

Hi Yes  they must be happy with his weight m the dieticians we’re on my case very quickly.Good luck with your chemotherapy as well it never rains but it pours!

Hazel x

Hi winnigirl

We are all different and your dads cancer is slightly different to mine

But for me the first 6 weeks after treatment finished were the worse, i was on oramorph and also had a patch of fentanyl on top of it

For the first few weeks i would cough up blood every morning, and i lived my life around when i was getting my next pain relief... anything would stick to my tongue and it was a challenge getting my protein drinks down.

I also slept a lot.

I used to get dizziness when standing as well, and sudden hot flushes, i was also constantly spitting out salty mucus.

Then gradually it got a bit easier, i found my first water in the morning was less painful, and i started to try other foods.

At first things such as tomato soup would burn my mouth horribly, but gradually the burning and the pain eased off.

By 8 weeks post treatment i could drink all liquids without any pain (although i had a wierd double swallow motion as a result of not wanting to gag)

I also started trying to eat soft solids about this point, i managed about half a faggot.

I was also pretty much pain free unless i tried to eat at 8 weeks.

By 12 weeks i was trying small solid meals, and was pain free even eating.

Other side effects i remember are constipation, as a result of the morphine, it is essential to take laxatives religiously... i think at times the constipation was worse than the mouth pain

Trev

Thank you so much for sharing your experience.