Can’t shake that it’s not gone!

Hi Guy

You have lymphodema. Give your CNS a ring to get a referral to a lymphodema clinic. Really it’s normal and most of us get it to some extent. I have a short video of how I managed mine which was only minor on my blog. 
The clinic will at least show you exercises to help 

Mean while. Have a read of this piece in cancer recovery. It may help 

https://workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

Fear of treatment failure and recurrence is all part of that recovery. It does ease and must of us make a fairly uneventful return to a “normal “ life 

Thanks, it’s good to know but bummer that it’s another thing to deal with!

yuggyp said:

I “man up”

Man up!!!!?

Tell them to read Peter Harvey’s essay. I printed copies for friends and family. 
Oral / pharyngeal RT is a HUGE assault. It takes a while for your body to heal and the mind a darn sight longer

Hugs

Hi Guy

Its a distressing time and treatment for us, physically and mentally draining, recovery is a long process with many issues appearing along the way, lymphedema is common with many, massage often reduces the swelling...

We all have it at the back of our minds that we are still vulnerable to the disease....natural instinct.....

As for 'manning up'? very easy for those on the outside to judge....they are not in our shoes....Macmillan counsellors are available for support....maybe give them a call?

Take care

Peter

Guy,

Only those that don't know what it is like to be in our situation tell us to "man up".  Trust me, they would be the first to whimper if they had to endure what we do.

You have done really well and as Dani says you just need a little help from the lymphoedema clinic to tell you how to manage the swelling effectively.  I had the same and now a few months later I am almost back to my "normal" double chin.  The exercises do work and eventually your lymphatic system will reconfigure to allow better drainage.

 Hello Guy,

The’man up’ advice made my blood boil.   If these people could walk a day or two in our shoes they might start to engage brain before opening mouth.  

Hi Guy, some good advice already especially re lymphodema... sounds like you're doing brilliantly and that all is on track given your ENT team are happy. There are so many bumps along the treatment and recovery road and often times we have little wobbles about what is happening.  I spent ages thinking maybe I was resistant to the treatment as my recovery was actually pretty good.  And then I had to have multiple scans as, whilst there was 'no evidence of disease' there were some stubborn cells lurking where the lump was and my Drs wanted to keep checking. I am now nearly 11 months post treatment and they are happy with scans and no need for further imaging.  I'll continue with regular checks and scope at ENT. It's all so stressful but I try to live like all is good until someone tells me otherwise.  No need to 'man up'... I can have little wobbles but I don't fall down (if you remember Weebles, you'll get the reference!). Keep checking in on here.  So many amazing people and excellent champions all willing to help.

Lisa x 

Hi Guy tell the man up ones to go and try living with our side effects. Get them round with a pack of Jacob’s cream cracker no water tea or coffee. Get them to eat 6 one after another no drink. Then say that’s our world on a good day.

Makes me so angry for you. Get them to read our blogs or dump them all. 

re your neck sounds like lymphodema to me do as Dani says contact your cns. 
keep with us in here we’ve walked in your shoes we never judge  always someone around 

Hazel 

Liesle R said:

I can have little wobbles but I don't fall down (if you remember Weebles, you'll get the reference!).

haha.. weebles wobble but they don't fall down..  I believe you've just earned yourself a new forum name..