Things we were never told

I get the same as a result of 2 neck dissections.  Over time I have learned to manage the situation, but it does take some effort to relax and let the muscles calm down!

Dermatitis in the middle ear.  We moisturise necks and face during  RT but forget the ear.  The radiotherapy beam goes in one side and comes out the other.  In my case it looks like a significant amount it came out through my left ear.  It appears I now have perichondritis in my left ear which is unpleasant and flares up every couple of months.

Saw my consultant yesterday and he identified it from photos.  The next time it flares up he wants me to ring him directly and come straight in so he can positively identify it and work out a treatment plan.  That is not bad service from the NHS!

We talk a lot about recovery time, but I think our hospitals minimise this and suggest a couple of months - at least until we are through treatment. 

It is worth reminding everyone that recovery is a marathon with many small improvements over the months and years that follow.  Often it is 3 steps forwards on one back on our recovery journey. 

As to eating the maxim is little and often and try new things.  Don't expect what works for you one week will work the next.  This is a journey of discovery to the new you.

Not sure if it was related to the RT, other treatment I received, or my condition but I recently spent another 4 days in hospital with supraglottitis.

Swallowing has always been a bit of a problem and seems to be getting worse, food is OK  but really struggle with tablets (just about cope with capsules)

PS I probably wasn’t clear that Michael only went to the GP to get a referral to the hospital. We didn’t expect her to solve the problem. I’m frustrated because he didn’t specifically ask her to refer him - which I would have done - because he was waiting for her to suggest it. She didn’t. I don’t think she grasped the seriousness. 

If anyone has any tips on how to get a quick appointment back at the hospital after 7 years I’d be very grateful! Thank you 

Hey Terry. Lovely to hear from you again but not great that you’re having problems. 

Penrod said:

Not sure if it was related to the RT,

Maybe but it’s usually due to an infectious agent.  Maybe the sensitive tissues are just more prone? 

RuthieSun said:

PS I probably wasn’t clear that Michael only went to the GP to get a referral to the hospital.

Ah…. I was always told to go straight to CNS. Mines been brilliant. I even went back once after my five year discharge. She got me seen the very week I contacted her. 

Thank you, it was back in summer when I had the supraglottitis but are fine now.

Typical, it happened in the heatwave, I couldn't even swallow a glass of water for 48 hours.

Hi Ruth

when I was discharged 2 years ago after 5 years I was told any issues to contact the ent consultant s medical secretary and or my Macmillian nurse.  Not to go to GP but they will willingly get me an appointment as a past cancer patient.
I have both emails and phone numbers maybe that’s a good place to start. Be firm with switchboard if you haven’t got the numbers. Or maybe look in hospital website  mine actually lists the medical secretary’s number. 

Hopefully  he can get sorted soon 

Hazel