Mouth on fire

Hi Greenzebra511

ouch! I’d absolutely insist on an NG. Your poor mum has another month or so before her mouth even begins to settle. How come there never seem to be oncologists on call over the weekend. 
Refuse to leave hospital without one. 
I hit this wall after three weeks and had an NG for 8 weeks. It saved my life. 
She’s not at the Royal Marsden is she? 

Greenzebra,

I had base of tongue cancer and had similar treatment; 7 courses of cisplatin and 35 radiotherapies.  I'm not really sure what you are asking but it sounds like mum is having a lot of trouble eating. If that is the case, I would ask both the hematologist and radiologist about having a feeding tube put in her stomach.  This is fairly common for throat cancer patients.  I didn't get one but know someone that did.    

Oh, by the way.  NEVER, EVER be afraid to ask your doctor or nurses questions.  If you mum has severe throat pain that should be addressed immediately.  They prescribed me 5mg oxycodone for throat pain. It's not enough to get addicted but will knock out the pain.  I was also prescribed a liquid lidocaine that could be taken about 10 minutes prior to eating that would numb the throat.  One other thing you can do for throat pain that my doctors taught me is to mix a solution of 1 tablespoon of malox with 1 teaspoon of benadryl (diphenhydramine HCI oral solution) and swallow about 10 or 15 minutes prior to eating.  This helps with the pain during swallowing.  

Ultimately the best thing to do is get as many calories as possible.  I found the easiest things to eat were chicken soup broth (home made if possible), oatmeal and noodles.  When I couldn't get solid foods down any longer (which lasted about 2 months) I drank soup broth and high protein Boost or Ensure.  I lost around 35 pounds or about 23% of my body mass.  The first solid food I was able to eat was a donut but it took about a quart of milk to get it down.  

FLUIDS, FLUIDS, FLUIDS keep them going whether its intravenously or orally.  I can't stress how important that is to feeling good.  No kidding FLUIDS, FLUIDS, FLUIDS!!!

Before your Mum is done with her chemo and radiation treatments be sure to find a lymphedema therapist.  I suspect she will have some swelling in her neck and still have difficulty swallowing.  This happened to  me because the radiation treatment scarred and narrowed my esophagus and burned out a lymph node. The lymphedema therapist will teach her how to manage the fluid retention and make it easier to swallow.  

It is a tough journey but I am confident your Mum will survive.  

Jim

Thanks, I definitely think an NG will be the answer and get us out of here, but unfortunately it's proving difficult to see anyone! 

Oncologist still hasn't been, medics are run off their feet, been asking for a review for 4 hours. The nurses don't understand that she's incapable of swallowing without gagging due to the radiotherapy and that she needs hydration due to the cisplatin. Feels like I'm having to fight to get her anything and it's awful. I'm a nurse myself and I know they're doing their best, but it's not good enough. Still having to manage on 6 hourly iv paracetamol, they keep offering oral morphine but she just vomits with it and then her throat is even sorer.

Still on MAU, don't think the bed on the oncology ward is going to materialise. 

Not Royal Marsden, Royal Derby, we have discussed a tube with the team already, so if this was a weekday I think there'd be no issue.

Just wish we could manage the pain relief and nutrition at home but unfortunately not able to without a tube.

Really appreciate you getting back to me with your experience. 

Hi Jim and welcome to the community 

Thanks for all the advice. Finding it so difficult to speak to the doctors, I just keep getting emotional, think the sleep deprivation and worry has kicked in.

They're saying the only medication they can give is paracetamol, unless she takes something orally. It's awful not being able to help and the medics are at a bit of a loss. Asked them to call the on call oncologist but they said they can't unless it's an emergency...

Hopefully, get the pain under control soon. Glad to hear you're back on proper food! 

That’s the trouble with staff in a general ward. They don’t understand a cancer patients need let alone one with throat cancer. Good job you know what you’re doing and can fight her corner. Do ask for some industrial strength antiemetics too. I remember morphine making me nauseous all day and metoclopramide didn’t touch it. 
I hope you get somewhere soon.

Hugs

Greenzebra511 said:

Asked them to call the on call oncologist but they said they can't unless it's an emergency...

Struth! 

I know they're v busy but they should be able to organise a morphine injection  with an anti sickness medication as well. They have to get her pain under control.

I'm a Nurse also by the way.

Finally got a dose of sub cut morphine at 18:30, she has been getting iv cyclazine which helped the nausea, but her mouth is just so sore and the MAU staff just don't get it.

The medic was very against NG as he said "it will resolve in a couple of days"... Honestly what's going on?! He wouldn't prescribe the sub cut morphine regularly, but I've told mum to ask for another dose in a few hours and hopefully more sensible staff are on the nightshift.

Just hope the oncologist reviews her tomorrow, can't believe no one came today. And I know staff all doing their best, but difficult to defend when they won't even phone oncology to chase them up/remind them to see their patient.

Anyway all settled for a sleep when I left, fingers crossed for a settled night for her. Counting down the days till this is over! 

Hi just wanted to say hello i sm Hazel almost  4 years post radiotherapy. As Dani says your mums  mouth going to be sore for quite a few weeks after treatment. I had n g tube fitted week 3 and had it in for 6 weeks everything went via  there tube. Push fir the n g tube on Monday if you can’t get anything tomorrow. I do feel for you and mum. Sadly the n h s staff don’t always appreciate his difficult it is for head and neck cancer patients. Do get as much liquid down her when you can I ws a minimum of 2 litres a day. Mostly via tube. Unfortunately it’s unlikely to resolve in a day ir so. As fir chemo  don’t stress many of us dont  get the full course u had 2 out of a planned 3.Radiotherapy is the main course of treatment. 
Hazel x