Head and neck cancer

A place for people affected by head and neck cancers, including oral, throat , larynx (voice box), salivary glands, middle ear, and sinus and nasopharyngeal cancer. Support one another, ask questions, and share experiences.

Newbie...

jonh
Posted by

Yes it does seem like a daunting trip doesn't it ? I think the medical profession have to tread a very difficult path between being honest and warning of the worst and not terrifying the poor patient who is starting out of this unwanted and frightening journey. The anticipation is worse than the reality in my experience, your imagination makes everything seem massively awful and daunting.  The trip will be broken down into small pieces and you will have to deal with them one bit at a time, along the way you will, hopefully, meet and be dealt with by kind and caring people who will make it all easier.You might find it helps to use a calendar and mark out the appointments over the next few months and you can see how far though the trip you are every day, it helped me. The eating side of it is a big issue for people because food is a massive part of our lives, probably more than anyone here realised before starting treatment, so its perfectly normal to be scared about it. There is a lot of information here in past discussions about food and eating with head cancer if you feel it helps to read about it.

Please keep us informed as to how you are getting on.

Jon

Sky1
Posted by

Hi babbinel, 

my friend went through radiotherapy for throat cancer & the 1st 3 weeks were fine, it was the last 3 weeks that got tough for her. She never got a feeding tube as she still managed to drink the ensure shakes. Looking back her family & friends were so supportive and we all chipped in with anything she needed & I know thats what got her through!! The day she rang that bell on her last day of treatment was one of the proudest moments of my life.   6 months on she was at her husbands 70th birthday party dancing away looking fabulous. 

you can do this it’s to help you get better a few months you will look back & be super proud of yourself. 

good luck keep us updated how you get on. 

xx

Babbinel
Posted by

Hilary, I read your post days ago and since then, because I’m not used to the navigation of this forum (especially on my ‘phone) I’ve not been able to find your post to me in order to reply to you. 
I felt compelled to respond to what you posted about your planning scans. I was in last Friday (10th Jan) for the planning CT scan, I managed it! I don’t suffer from claustrophobia and apart from my imagination running riot with me, I coped with it well.

Yesterday though, (14th Jan) I was in for the MRI portion of the planning stage. I managed the first portion, after each cycle of the scanner I gave a ‘thumbs up’ but after possibly 4 cycles of listening to bad German techno music, I started to feel really uncomfortable. It wasn’t claustrophobia or the sensory effects, it was the fact that I started with cramp in my jaw, then I noticed I had cramp starting in my lower back. After one particular cycle, the radiographer asked if I was still okay... I needed to wave my hand to signal so-so, in fact... not so much! They stopped, came into the room and told me I could talk, I told them as best I could that I had cramp in my jaw and my back was hurting, they put a gel pack into the small of of my back and asked if I could manage a last 5 minute cycle of MRI before they put the contrast dye in. I managed it, but listening to the ‘German Techno’ punctuated by seagulls had become horrific. After that, they brought me out, let me walk and flex a little. I was assured that after the dye was administered it was the ‘home stretch’...

So, they re-masked me, administered the dye and carried on. Those last minutes were awful! My epiglottis is swollen so I was snoring, I couldn’t swallow properly and I couldn’t even find comfort from trying to make patterns from the noises coming from the machine. 
I got through it, it was uncomfortable, my jaw was aching, my back felt like I’d been lay on a brick and I was thoroughly miserable. They didn’t lie though, it was the last cycle and they got me out of it pretty quickly. 
I’ve been assured that’s the longest I’ll ever be restricted so much and that I’d feel like that. They’ve not lied to me up to now...

jonh
Posted by

Well done. That is one of the most unpleasant hurdles ticked off and done.  Treat yourself to something nice to celebrate.

Jon

Beesuit
Posted by

MRIs take ages and as you’ve found you have to keep still. Take heart. They are right, it’s the longest you’ll be confined. 
My radiotherapy from clamp down to release was only ever ten minutes at the most. 

Penrod
Posted by

I never really knew what the difference was was with all my scans, as far as I was concerned I was just going for another scan.

I remember one being really noisy and another time I had to go for a full bone scan which really took a long time, with that one they but my arms in a big elastic band type thing, which might sound horrible, but was great as it took the strain from my shoulders and meant I could relax more.

Made it to Christmas, made it to my birthday, had a nice summer, made it to my 2nd Christmas now writing a blog about my treatment - https://www.1in1440.co.uk/april-2018-you-have-cancer/