Backsliding

BertChen

Backsliding. 

I'm 60 days post treatment. I was doing good a couple weeks ago, or so I thought. Getting a little body weight exercises and yoga done, walking the dogs...

This past week, and especially today, the exhaustion, and the loss of balance, it feels like it did after a week of treatment. 

I know some of the experiences here are way worse...

Anyone else here with similar progress experience backslide?

wbcgaruss

I would say that many of us get ups and downs post-treatment. You can be feeling pretty good and feel like you are on your way and get a day when you feel just plain lousy. You can get periods of a week or two where you don't feel all that great. Keep in mind for most of us recovery is a minimum of 6-8 months and some a year or more so you are in the early part of your recovery. I didn't feel fully recovered till about a year out from starting treatment and from that, I mean fully recovered. You will have your downs for a while but they will get shorter and less and less as you recover more fully. You are not in a backslide my friend just another phase of recovery.

NEGU (Never Ever Give Up)

Take Care, May God Bless & Watch Over You

Russ

MarineE5

BertChen,

Totally agree with Russ. I don't know what treatments you had, but my Radiation Oncologist warned me that the Fatigue from Radiation can effect us for close to a year if not more. When having bloodwork done, have your Thyroid (TSH) and Iron levels checked since they both affect our energy level each day. My Thyroid gave out and I have been on Levothyroxine for many years to help me.

You will get thru this journey and find yourself back to a new normal. The Red "S" on my T-shirt has faded, but I still get up each day with a plan to do something.

My Best to You and Everyone Here.

BertChen

https://csn.cancer.org/discussion/comment/1708211#Comment_1708211

RAD Brain! The Chemo Doc did check it a few weeks ago and it was normal.

But, see, I forgot...

Def will get it checked next checkup tho...

steven59

Thanks for sharing, I too am around 8 months post radiation and some days just don't have it. Being a high energy person prior to cancer my family can get confused when I show no motivation towards anything and they start thinking I have covid or something. thanks to our op and those of you who followed up'.

tse3eix

I am 8 years out from treatment ending and still have days like this. Radiation stays in your body for a lot longer then you realize and continues to cause havoc to you. But frankly when I was first diagnosed all I cared about was getting the cancer gone, and didn't give it a second thought about long term effects of radiation and chemo. I didn't realize years later I'd have to be worrying about my thyroid quitting, teeth falling out, barro receptors in the carotid arteries failing, esophagus stenosis and the list goes on with same or different things for everyone.

My point is, when you feel like you, your family and co-workers and medical providers are questioning why you feel bad this long after your treatment. It is not in your head, these are real symptoms and something is causing them. There are treatment options out there especially if you get with the correct medical providers. You may even have to try some non-traditional treatment options. They are learning more and more about the long term effects of what happens to the human body after large doses of radiation and what to do about it.

You fought a hard battle to get where you are at so don't give up. Question things, get second opinions, do your own research, talk to people., try new treatment options. You can do this.

Charlie

wbcgaruss

Steven, it takes a long period of time to recover from H&N cancer treatment. Let your family know they just need to be patient and give you time to complete your recovery. And you need to give yourself time. No pushing or rushing will help this it just takes time. At some point, you will get back your stamina, motivation, and confidence. This treatment is extremely exhausting and draining and recovery can be from 6 months to a year or more. So be patient your recovery is in progress.

Take Care, May God Bless & Watch Over You

Russ

steven59

Thanks guys/gals. Pt's reiterate that radiation is the gift that keeps on giving, but it's only words for us until we experience it.

wbcgaruss

Congrats tse on leaving your cancer behind 8 years ago and welcome to the CSN H&N discussion board.

I like many were in your shoes, I just wanted to get rid of the cancer out of my body and was not thinking years down the road.

Like you said, so many things concern us now thyroid quitting, teeth falling out, barro receptors in the carotid arteries failing, esophagus stenosis, and more.

I don't think we would have considered anything else except getting the cancer out, after all, it was the one thing standing in the way of us living our life, having life at all. Until we addressed this cancer issue and got it behind us or died trying we would have no peace.

And besides all that we did not have a lot of options anyway except to do the treatment and meet the beast head-on.

Yes, there are treatments out there for a lot of stuff even non-traditional but to some extent we end up with leftovers we have to adapt to and learn to live with.

One non-traditional approach to less saliva and neuropathy is acupuncture which I haven't tried yet but many have and have mixed results. Some find quite an improvement, others not so. You just have to give it a try.

NEGU (Never Ever Give Up)

Wishing You The Best

Take Care, May God Bless & Watch Over You

Russ

SuzJ

6 years out, thyroid is fried, anything to do with red cells is way down, and fatigue? zzzz... what?

This is the new normal, you fought for your life, and won!

I think I sleep 14 ish hours? way too much, but I just have to nap when its too much. I used to be an all in energetic person.

wbcgaruss

My oh my Suz like the rest of us you have been through some changes and have a new normal to live with. I assume you take thyroid pills to make up for your fried thyroid and about your red blood cell count being low I thought once treatment was done it would build back up again, Is your count staying low, or just on the low side, or is it dangerously low?

I agree we fought to save our lives and sometimes the new normal is anything but what we expected, Still we do the best we can and deal with it and go on. I try to count my blessings in all the little things of the day and big things too as they come along. I try my best to feel glad with what I can do and what I have left and not dwell on the negative changes.

Wishing You The Best

Take Care, May God Bless & Watch Over You

Russ

steven59

Yikes, I keep reading about the lingering effects of radiation. My radiologist was so confident his machines were so precise, nearly as tight as proton that all the symptoms would be gone in a year and that waiting for a slot in proton would cause more harm than good. every case is different, and I really hope the medical industry keeps working on the side effects for current and previous patients while perfecting treatment for future ones. I'm so sad to hear what you're going thru SuzJ and I'm starting to develop a picture where we do recover from rad after a year and then the radiation continues to slowly destroy cells faster than our bodies natural ability to heal. If so then I'm entering my honeymoon stage of recovery(woohoo) and will do my best to find gratitude in the good times, and try harder to keep up with my therapy!