Mouth cancer in jaw and jawbone

I still get very emotional now, after 3 years, slightest thing can set me off.

Strangest thing that happened to me though was a few months after my treatment was finished I really missed it all.

I absolutely loved being in hospital (apart from the time I got stuck in the lift) and really missed all the interaction when everything was over.

Can relate to that Penrod. I still, whenever I have an appointment at the hospital (had one this morning, all good), make a point of entering through oncology rather than the main entrance, then I go up the stairs and walk past the ward where I've spent about six weeks over three stays. Then come back downstairs to ENT out-patients to meet people who, starting with the receptionist who's been there all along, I feel such love and gratitude to. I can't sit in the waiting room for five minutes without a staff member sitting down with me for a chat, it's a great feeling even though it was brought about by some very difficult times.

I'd never go as far as to say I'm glad I got cancer but it has led to me meeting loads of wonderful people who I'd otherwise not have, not least "virtual" people on here.

Hi Alboyg,

You've had so many excellent replies already, so I'd like to add a couple of other tips when going through chemoradiation therapy. As @Beesuit has pointed out, it is pretty brutal. If you are offered a gastrostomy (feeding tube through stomach) definitely take it as I found eating and drinking for a month almost impossible with all the mouth ulcers. Also, take the pain meds religiously; I completely put myself over to the advice from all the consultants, dieticians, physio people etc, and  that eased some of the burden. 

I've blogged here about what to expect from getting the mask fitted, to side effects of radiation, to how long recovery might take. You're in for a roller coaster experience, but you will get through it, no matter how hard it feels at times. https://www.ansonmackay.com/blog 

Wishing you all the best for the coming months. You'll get loads of support on this forum

Cheers, Ans

Thank you Ans, grest advice. I will certainly do all you suggested.  so certainly sounds like it's going to be uncomfortable and painful,  but anything that helps me keep on top of my nutrition  will be welcomed.

Thanks again x

Aww, that's so sweet. I can fully understand where you're coming from. I  got very attached to all to all the staff that were looking after me in the hospital during my recovery in hospital. The level of care from every single one of these amazing people was completely off the scale!! The nurses and general ward stuff are, without a doubt, the most under-valued incredible people this country is so lucky to have x

Wow, so pleased you've managed to come through this hugely difficult journey in your life, again   you are yet another inspiration for my own journey ahead, and I think you for that. Incredible people do incredible things to enure we all have a future, and everyone's experience and support have already made a huge difference in making me feel less alone x

Thanks Dani. Been feeling really alone. Have great family and friends but no one who has gone through this. 

Josie x

Hi Josie, I think we all know how difficult it is to face cancer, it is something you have to do mainly on your own with others only in support. 

On here we do understand; and family and friends can say well intentioned things that don't really help.  As you say, unless they have gone through similar they really don't know what you are feeling.  I found that it took me well over a year to convince my wife what I was going through.  We both have different outlooks on life - she only sees the positive miracle and I plan for the worst, expecting much better but being prepared for the alternative.  After a while we finally found some common ground.

Is the alone bit possibly as a result of completing treatment and not having the constant clinical contact?  If so the Beesuit (Dani) has a link to a helpful pamphlet from a clinician dealing with post treatment issues.

Two things. 

   Persevere with friends and family in gently telling them what it is you feel.   Eventually they will get it.

   Remember this group is here for you to rant and ask for support from people who really know what it is like.

With that in mind, I hope you have a great Christmas with the family.

Here’s a link to the paper Peter mentions

https://cancercounsellinglondon.org.uk/about/after-the-treatment-finishes-then-what/

Hi Alboyg

I'm sorry, I've only just caught up with your post.  Don't know how I managed to miss it!

You've had some brilliant responses so far.  Congratulations on getting through the first part of your treatment.  All I would add is try not to overthink the next stage too much.  By all means take on board the side effects but do bear in mind that not everyone gets them to the same extent.  We can be quite different in our individual reaction to tratment.

With regards getting emotional, I too have always been quite an emotional person but my goodness it's off the scale now! 

Good luck with everything.

Linda x