Will there ever be quality life again?

Curlyn

Hi All, I finally had surgery for right neck node caused by scc, tors to find primary tomorrow. It's been recommended to have 33 radiation treatments and Cisplatin. I had neck dissection on July 25/17 ( the node's been there since July 2016, inconclusive biopsies, now stage III HPV). Left me with swallowing difficulties. Had spinal accessory nerve sacrifice,;scm muscle, internal/external jugulars removed, ext carotid and digastric muscle removed. Mental nerve is slowly improving but smile lopsided. So many losses with this disease plus everyone sees your deficits, no privacy. After meeting w/radiation im having difficulty deciding if I want to live with more deficits. Family espouses life at all costs, not sure that I do. High 80s chance of survival. Totally overwhelmed. Working in healthcare doesn't help...will I ever look the same after chemoradiation? Will I ever be able to go back to the gym which is so important to me? I'm now in year 2 of this journey and still wondering what the future holds...thank you for your help...

SuzJ

Yes

There will be quality of life, YOU have to want it tho, YOU have to push for it.

 

As far as the Gym? Look for posts by Andy from Ireland. Nothing kept him down, and it shouldn't you. He runs more a day that I think I have in my adult life!

 

Yes you have changed, cancer changes all of us in different ways. People that loved you before should still love you now, or they are not really friends.

 

Pick yourself up, and start doing the exercises you know will help you, smile more, no one will notice if its a lil lopsided, its a smile.

Remember, if you smile all the time, you'll have people wondering what youre up to!

 

Radiation and chemo are hard, there is no two ways about it, but YOU CAN DO IT! We all did it, some of us more than once (Phrannie)

 

Just remember the ONLY thing I heard on my first appointment "its curable' and go from there - you got this!!

DarcyS

Life after treatment

Yes, there is life after treatment and it is good.  Sorry to hear about your struggles now, but there is hope.  My husband did not have surgery but had extensive chemo and radiation. His diagnosis was scc of the piriform sinus T1N2bM0 stage IV. He had 3 weeks induction chemo then 10 weeks, 50 inpatient radiation sessions with concurrent 24/7 chemo. He was able to run and work out most of the way through treatment.  He needed to quit at week 4 of radiation but was able to start again 2 months later.  He is now almost 5 years post treatment, hopefully has last check up and scan in Dec, and life is good. He is back to eating and drinking anything he wants and has been working out and running ever since.  He also looks the same, just  has a few scars on his neck from radiation and probably can never grow a full beard.

I understand your family wanting life at all costs, I felt the same.  

Glad you found this site.  It is full of helpful, friendly people who understand and can offer support and help.  

Curlyn

Thanks so much for replies.

Thanks so much for replies. Helps to hear the positive. Not even sure until after tomorrow if radiation both sides or one. Hoping for the best while expecting the worse. 

SuzJ

Both

They do both to stop the pesky lil things escaping to the other side, wouldnt want that would you?

MarineE5

Agree with others

Curlyn, 

I too had the SCM muscle removed, weakened my right side, caused Lymphedema, etc. No saliva, scars, etc. I couldn't do what I did before cancer after surgery and treatments. I went to Physical Therapy and improved from there. Do I have side effects, like many here, you bet'cha. We all have our doubts, but you have heard the old motto, when the going gets tough, the tough get going.

If you were to walk in the gym and someone said you couldn't bench press 300 lbs, what would you do? would you turn around and walk out without trying or would you tighten up your wrist straps and get on the bench and prove them wrong. I think you are the type that would gladly get on the bench. 

My old Drill Instructor once told me right after I wasn't able to do a task that there were only 3 things in life I/we couldn't do. 1- Slam a revolving door. 2- Strike a match on a wet bar of soap. 3- Put used toothpaste in a used toothpaste tube. His words often echoed in my head whenever I was told I couldn't do something or faced a challenge. By the way, I did complete that task that was given to me.

My Best to You and Everyone Here

Curlyn

I appreciate your candid

I appreciate your candid responses. I also realize that it's early days still. Yes, I have been doing exercises for the trap muscle, neck and shoulder since day one, stretches, now lifting some weights, walking, etc. Constant pain from sa nerve sacrifice, wakes me up at 04-05 every morning with radiating pain from right shoulder up and around my head and neck, and I can only hope that this disappears in time, or at least improves. I have an unexpected pain where they took part of parotid, and shooting nerve pain in jaw when I eat certain foods. Really struggled with weight, having no extra fat, but have managed to gain a couple of pounds now incision healed. I just needed to hear some positive posts from people who have been through it. There are so few positive posts about people making it through chemoradiation and I know much has changed in recent years. Much love!

CivilMatt

forr a life changer try a little radiation

Curlyn,

I am 5y 6m post radiation erbitux & surgery from stage IVa, scc bot, 1 lymph node, hpv+ and the permanent side effects are livable.  To have not selected rads I would not be here and one’s demise ‘would not be pleasant.

If you can weather the storm, you should find enjoyment ahead.

Good luck,

Matt

JennaM

 

 

Hi to all!!!

Most of the posts confirm my sided effects; I do have a horrible time with dry mouth.  I have question dough, I have cancer in my left tonsil, they could not perform the surgery, I am going through radiation; Sep. 11 I started 4 week.  What really worries me is that my tonsil is not getting any smaller; I would say it is bigger and looking swollen.  Is this normal?  I was hoping for it to shrink!!  Thank you for any answer, J.

 

JennaM

One more question; any advice

One more question; any advice on supplements, dry mouth or lack of saliva??  I read so much research papers, but advice from a person who went or going through it would be so much better and so appreciated!

 

 

PACE

Quality of LifeOnly you

I am a caregiver  - not a patient/survivor - and so perhaps I have less of a right to express my thoughts.  My dear friend did elect to have radiation. She has lived a long life since but it has been very compromised. She requires a feeding tube which is, in fact, very manageable to deal with on a daily basis. For those who can no longer eat solid foods or even drink liquids as a result of radiation it is a life saver. But radiation has left her unable to eat at all. Luckily she was never a great eater but even so she does indeed miss food. Both the taste and the social interaction of dining with friends. Radiation has left her with copious amounts of thick and stringy mucous which even with suctioning is quite difficult to deal with. Her dry mouth is severe and she has tried everything offered to help with only marginal results.  The dry mouth makes it very difficult for her to speak and be understood. 

All of this said, radiation for so so many is lifesaving. So many wonderful members of this forum would not be here without undergoing radiation. I simply want to provide my prospective. Only you and your medical team can come to a decision as to what is right for you. 

You will be in my thoughts and prayers.