Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

[Jaffa44]

As you probably know Stace, it can be quite tough.... I feel like I’m grieving a bit for our old, pre cancer life and also I’ve lost my buddy, my partner in crime and my best friend....he still physically inhabits the space and has retained a sense of humour which is admirable in the circumstances,  but, well, life is different.

i know that will change as side effects begin to drop away but I think we are both changed by the journey.

I feel sad seeing him go through the dreadful side effects, the days when he is nearly crying as he can’t taste a favourite dish.... I guess I would say we endure, whilst we seek to find our new normal...

[CaptainAustrali]

Hello Mate - thanks for the reply

I guess I just have to learn to live with it, much like everything else.

The oncologist (who I like and respect) said not to worry about it, it's just fluid - but sometimes as I mush that lumpy flesh around .. it just reminds me of the lump I got when first diagnosed .. so after 3 years in the clear, it's a bit stressy, I just have to put it to one side and move forward.

Honestly, I feel somewhat broken, but it's hard to pin down exactly HOW, as it's most likely a combination of a lot of little things.  Unlike you, the thyroid damage I experienced resulted in a massive weight GAIN, so you're fretting about being lost flesh, I'm fretting about the opposite.

I spend too much time aimlessly pursuing entertainment - whether it's TV shows, computer games or whatnot.  Aside from parenting, I'm finding it a little difficult to 'plug back in' to life.  It's not depression, it's not particularly bad, it's just a kind of aimlessness in my post-cancer life.

That's reflected in the guitar-learning, I guess.  I started out strong, practicing for long periods every day, but now I'll pull it down once or twice a week.  Still making progress, but not as fast.

I can play (not very well) a few songs, the ones I've practiced most (and sound most like they are supposed to) are:

"Horse With No Name" (America)

"Wish You Were Here" (Pink Floyd)

Am working on a couple of Neil Young songs (Hey Hey, My My - and I've got some of the riffs from "Heart of Gold" sounding OK - it's my goal to be able to play "Don't Let It Bring You Down" (which is one of my favourite songs).

Right now starting to work on "Landslide" by Fleetwood Mac - or it might be a solo Stevie Nicks thing, although I think Lindsey Buckingham played the guitar - the things that dude can do with a guitar .. sheesh.

But yeah, cracking on I guess, in a kind of .. low energy, aimless kinda way.

[Alan22]

All, if any of you or spouses wold like to chat directly with peer support survivors of head and neck cancers, ring 131120 and ask for Cancer Connect and chat with the good folks there. They will put you to volunteer trained supporters who can empathisize with the experience. It is a great service and they are always on the lookout for others of us who have volunterred to help in this way...it is very cathartic for both parties. It is just a confidentail few phone converstaions. 

I was having a dry mouth moment today trying to wolf a scone and jam, without drinking enough liquid..very tricky.

You are all great sharers and helpers...well done. 

Alan

[mahootna]

@CaptainAustrali 

Hi, it is exactly six years since we discovered cancer on my tongue.  The doctors moved that fast I didn't have time to think.  So I am five and a half years post radiotherapy treatment.  I didn't have to have chemo so that was a plus.

I have what they call a woody neck due to radiation scaring.  At times it feels like there is a lump there and is worse in the cold weather.  One spot is a bit tender if it is pushed on so I leave it be.  Sometimes it is difficult to turn my head fully to the right, side operated on and had heaviest doses.

The shoulder on that side has dropped and the clavicle is raised as though it has been broken.  This is due to the muscle weakness where the cut into my neck.

Reading some of the posts brings back memories of that dark time.  Now six years down the track I am still learning to adjust to not be able to eat a lot of the foods I enjoyed before this episode.

I have learnt to manage some things but at times I would really love to go and have some junk food.  We rarely eat out as it is too hard to find something on the menu for me.  When having family get togethers I always prepare what is easiest for me, everyone understands.  This is also the case with my close friends.

I would like to say some things get easier but unfortunately the things that have been lost never return.  My taste has never recovered fully, I guess because almost half my tongue was replaced with a flap from my forearm.

On the bright side, it was caught in time and I am here to enjoy my beloved and long awaited grandaughte who will be two in a few weeks.

Cheers to all and just take one step at a time, one day at a time.

[Alan22]

Well done Mahootna...congratulations!!  Know how you feel.  A good upside is that I only get cheap red wines as I can't tell the difference!

Re the Woody neck, I get a remedial head and neck massage about evry 5 weeks ...it really helps keep some f;exibility.

Cheers, Al

[Azjoetrucker]

   Your playlist sounds like my utube favorites list (excepting Twilight Zone which would definately get me into guitar). At one time I got into Blues Harp, so "Heart of Gold" and Neil Young are close to my heart...
But seriously, you sound tired and any veteran on the Cancer Wars has a right to be.
Let me share the following, however: when I was in the depths of just getting acquainted with side effects that convinced me I'd never be the same again...when for the second time in my life I acknowledged Fear and Vulnerability...I read Captain Australis' piece on learning the guitar, just because To Be Alive Is reason enough to take up a challenge and Live, thrive and Grow.
That little essay has kept me afloat thru my weaker times and inspired me. Now I have a few familiar songs to reinforce the feeling having read those words.
I'd like to give back a little in saying that your words and your sharing in these last few years certainly has made a positive difference in my outlook.
So Captain, go ahead and take a vacation and be human...I'm sure I'm not the only only person you have inspired to find Living amidst this interesting and turbulent times...
Cheers and Thank You
Joe (Ex) AzTrucker

[Stace11]

Wow you described that so well, Jaffa, you just made me very emotional. It’s so sad- you’re absolutely right. The quiet, the sadness, the loneliness.... my husband is difficult to “care for” as he’s so independent and would Rather put his head down and get on with it but in doing so he has become quite insular.  I recognise that this is what he must do to get himself through such a traumatic time, but I miss him and it’s so terribly hard to see him suffer whilst still he desperately holds on to his dignity.  I miss the fun, the laughter, the social life (he doesn’t want visitors right now) and our life outside of hospitals and the safety of our house. I know that life will resume to some kind of normality in time - perhaps a different kind of normality to our “pre cancer” days but right now that seems a little way in the future. It’ll come. All I want is for him to feel better- it’s rough! X

[Anonymous]

Hey again, I see plenty of familiar names still contributing to this thread.

As mentioned last month, I had recurrence of my previously treated tongue cancer that lead to a salvage neck dissection operation.

Well, unfortunately when doing pathology on what was removed they found extracapsular extension which means the affected lymph node may not have contained its load of cancer cells, and they could be marching on down the lymph chain toward my heart and eventual metastasis.

This week I’ve started a second round of radiation and chemo, let’s call it a rematch of sorts against an old foe.  Another 35 doses of radiation and weekly cisplatin but this time over my shoulder and chest.  There will be a neck overlap area that gets a double dose but I’m hoping the new target area doesn’t flair up mucositis and the other internal joys of the first treatment course.

I’m thinking to do a video journal this time, to provide some insight into living with cancer treatment, second time around will be different but I’m sure there will be plenty of tips and tricks worth sharing.  I’ll share the YouTube link here when I get rolling, would love some feedback and suggestions for episode content.

cheers

Shane

[Mozz]

Hi Shane,

Sorry to hear Mate about you journey. keeping my fingers crossed for you and hope all goes well and wishing the best possible outcome.

I had my second Pet Scan today and wont know results until September 11 when I see the Oncologist again.

Last Pet Scan I had showed a small area on  right side of neck that they seemed to think was infamation from Radiation therapy. Will know soon enough I guess whether it was infamatoion or something else.

All the best.

Maurie

[Anonymous]

Thanks Maurie

For the forum follower - here is a link to first of a little series of videos I intend to knock together during my next round of treatment.  If you have any questions throw them into the YouTube comments and I'll try to answer them in a future vlog.

https://www.youtube.com/watch?v=r9qjQwbrdCo