Hearing and swallowing problems

Hi Elaine. I agree with Linda, your team are not doing a great job at the moment. I would contact your Macmillan nurse and let her know your concerns. If you have pain it needs controlling, if you have hearing loss (presumably you had radiotherapy?) then if needs monitoring. I lost hearing 4/5 weeks after my radiotherapy finished, due to an “effusion” (fluid in the ear) -it was ghastly. I was told by ENT that if it hadn’t resolved in 3 months they would put a grommet in. They prescribed an Otovent balloon which you blow into, and the ear cleared in about 2 months. Tinnitus is often worse with stress, so should improve as you get some of the other issues sorted. A Hearing therapist really helped me to deal with live with the tinnitus. Your MAcmillan nurse should be able to advise about all of this and request appointments for you - Speech therpay could be moved along by them as well.

It’s a shame to have to resort to PALS but if that gets you the right treatment and support it would be worth it.

Go on, be a pest and get the help and advice that you deserve. They want to help really, but just need encouragement.

Good luck

Hilary

Thanks Hilary

no I’ve not had radiotherapy yet. I’m 9 weeks post op and seeing oncologist tomorrow finally to have that discussion. My hearing or lack of it happened about 4-5 weeks ago. Was fine post op initially, I reckon I have an effusion, been reading about it!! 
thanks again

Elaine 

Good luck Elaine. Let us know what your oncologist says 

Thanks Dani

will do, hoping I could get the Macmillan to get ENT to look in my ear at the same time, fingers crossed  

Elaine

Hi everyone 

though I’d post an update…

so I went for review today. Had to make a decision regarding radiotherapy, to have or not to have. Hard decision as I’d prefer them to tell me what I need!! Then it seems everything is unknown?? I have agreed to radiotherapy because I remember my surgeon saying to have it. The oncologist offered me it but couldn’t advise whether I should have or not?? Once I decided to have it, when I said if I don’t have it and the cancer returns I’d regret not having radiotherapy, she said then it’s the right decision to have it. She was lovely and very informative plus I’d done lots of research myself so feel well informed-I guess I don’t like making profound decisions like this because your damned if you do and damned if you don’t! After my last surgery all was clear but because my previous op in September showed perineural invasion that’s why I was referred for radiotherapy. 
hope I’ve made the right decision. Guess we will never know ? Is this how others found it when seeing the oncologist for the first time?? Very much my/our decision??? 
My ear prob by the way is fluid behind the ear drum, other than steam inhalation nothing to be concerned about? 

Hi Elaine. It sounds like the right decision to me. I wasn’t given a choice because they couldn’t operate. 
My oncologist told me he’d cure me and he did. 
You’ve a lot to prepare for so stick with us and we’ll get you through 

I’m over three years clear and living life to the full almost as good as new. 

Hi Elaine. Don’t worry we’ll help you throughout I’m 3.5 years for chemo and radiotherapy I couldn’t have surgery as one of lymph  nodes was  too close to spinal cord to operate. Take it one day at a time and as long as you take your pain killers when needed and laxido or movicol for constipation.Listen to your team likewise any issues tell them straight away you’ll get through it. Any help just shout out one of us will always get back to you. I had to make an informed decision about my 3 rd chemo I decided against having it and in conjunction with oncologist he agreed with me. I didn’t have it has my lump had receded I had had no sickness with previous 2 but slight ri going in ear . I still got the cure response that we all want. 
hugs Hazel 

glad about the ear. 

Thanks Dani, 

well I have come so far after 2 ops, if it gives me more time before it returns that’s great. Again all unknown but that’s the nature of the beast I suppose. Fingers crossed I cope with it ok, my surgery was pretty horrific in the immediate post op phase so if I can get through that I’ll be able to get through this . 

Hi Elaine,

With my journey I decided not to have radiotherapy at this stage.  However, with what you have said about your case if it was presented to me in my situation I would have made the choice to have radiotherapy.  We are all different, but I hope that helps you come to terms with your decision.

Thanks Hazel, it’s good to hear such positive experiences 

when you say take the pain killers is that for the burns or the mouth pain from ulcers etc?? 
 Elaine