Dealing with long term side effects

I'm almost 11 years out from treatment, 13 from Dx. I STILL have memory problems, numbness/tingling/shoot-holy-crap-pain in my neck, endless tooth problems, and now lymphedema in my arm. Oh, and I'm only 35.

I am 4 yr out of treatment stage 4 throat cancer,chemobrain is still with me.I also lost taste bud,burnt out my thyroid (cant get under control) lymphedema in neck arms and legs..have to eat soft food still having trouble swallowing..Pain in neck and the bones in my face hurt all the time..Doctors dont seem to understand and have been told if i am having side affects that its rare.But reading some of these post im not alone.Also since chemo & radiation i feel like im burning up from the inside out,soaked all the time.i dont feel so alone and crazy seeing that others are struggling with the same

12 years ago, after chemo for breast cancer, I experienced chemobrain that lasted for about 2 years. It felt like my brain was wrapped in cotton and my thinking was foggy. Now, one year after chemo-radiation for base-of-tongue squamous cell cancer, I have experienced what seems more akin to PTSD. In fact, more and more professionals are recognizing that post-traumatic stress syndromes can affect people who have undergone all sorts of traumas, from devastating hurricanes to serious life-threatening illnesses and treatments. Symptoms include feelings of fear and panic, sleep disturbances, memory and other cognition problems, etc. This is all to suggest that what many of us are experiencing could, in fact, be PTSD and, perhaps, not chemobrain. Either way, of course, it's miserable. Maybe seeing a therapist or using some of the therapies employed to treat others with PTSD (yoga, meditation, "nature therapy") could be helpful? It's worth considering...?

i agree about PTSD, We've all been through enormous traumas/strains: first in getting our diagnosis, then dealing with various medical institutions/physicians, surgery & its long term effects such as lymphedema & numbness, and soon after all those assaults, chemo/radiation (for those who, unfortunately, submitted to the procedures) and its horrendous aftermath.
I still experience a great deal of rage about the procedures that were done without my consent while under anesthesia and afterwards in the hospital when I was incredibly weak and unable to speak (due to the uncappable tracheostomy that was performed)--and I made a vow to myself to never allow myself to be subject to any doctor's "mercy" and to stay out of hospitals (except for infrequent monitoring via MRI). Thankfully, so far, I've been able to keep that vow!

I, also, feel enraged that both the dentist and primary care MD I had complained to about oral pain for over a year didn't take that red flag symptom seriously and dismissed me and my pain (as is so often done to women patients) so that the cancer was stage 4 by the tine it was discovered!

I'm Carol, one of the moderators here. My first ex-husband enlisted in the army and did a tour of duty in Vietnam. I first met him shortly after he was discharged. We were young when we married and had 3 children. Our marriage lasted 24 years. He said very little about his time in the army. I did know he was never on the front line shooting the enemy or being shot at himself. I did see some photos he had of helicopters and explosions under them. He had nightmares, yelling out in the middle of the night, but never remembered why. He had a "bad temper", got very angry about things that weren't that serious, and got over it quickly. As soon as his outward anger was gone (very quickly) we were expected to get over it, too. I got to the point where I wasn't going to deal with it any more. I had no idea it was PTSD, nor did he or anyone else. He refused to go talk to someone or see a doctor about it. When he hit our 18 year old son and injured him, I ended the marriage. Fast forward a few years, he was depressed and had physical problems that prompted him to seek care at the VA Hospital in Baltimore. It wasn't a very long time before they recognized that he was suffering from PTSD. He went for group and individual counseling and they established a medication schedule that helped. We get along well and one day he came to my house to fix my roof (he's a carpenter). He was a different person. It takes a lot to get him angry and he handles it better. It was a huge help that others realized he had things going on that they'd never really understand. It was the first time all of us understood how it all affected him. I have NO difficulty understanding that what you've been through caused PTSD. Head and neck cancer is maybe the most traumatic one of all, in general. I remember in nursing school (I'm an RN with oncology and hospice backgrounds) when they talked about all of the issues caused by it and the general lack of support many people feel when no one understands the specific problems you face. Knowing your doctor failed to listen earlier as you suffer through pain and fear is terrible.
I urge you to find a good therapist to get evaluated. My ex is a good example of what seeking help can do to help you reach a little peace in your life. My kids asked if he could come along for a few days while I was on my annual month at the beach vacation years ago. He drove me crazy and I counted the minutes until he left after three days. Last year our daughter was married there on the beach. Her father came up for several days. Wow, who was that guy? I told him he could come up again and this time he came with our son for a week. I must say, I never wanted to throw him out which was a new experience for me. He's finally "balanced". I was involved with an internet service provider trying to get online capability on the beach for just a month so I could still moderate here on CancerConnect. It became a nightmare trying to get a signal and tearing through gigabytes. I had to go to the local store but was truly worried about losing my temper because they were really nasty. My ex was there and he went with me to "keep me calm". A complete role reversal! He went and when the guy asked him to tell me not to disparage their service to others in line (LOL), he told the guy, "I can't, she does what she wants to.".
One thing I can promise you is that there will be people who will always discount the trauma you've endured and will either act like nothing's wrong or change their own behavior that's adding to your stress. That includes doctors and nurses, as well as friends and sometimes family. Through professional intervention they can help you deal with that. I wish all of you the best, you deserve it!
Carol

Hi Faith, I don't see the attachments, am I missing something?

Hi Faith, I'm new to this group. I'd like to get these articles also. I'm 2-1/2 years in remission from NPC mets to my lungs. I have a lot of long terms sides affects. No taste, no sense of smell, and lots of ear and sinus infections

I'm 1-1/2 years out from mets to lungs and almost 4-1/2 years out from NPC. I have chemo brain too. I have hearing issues. My ears keep getting filled with fluid and I have a hard time swallowing. I have a very dry throats and sinuses. I have to do sinus rinse 2 times per day to clear out the back of my nose and sinus. I guess we just have to be thankful that we are winning and surviving. God Bless you!

I am blessed,just some times i feel alone like no one understands how my struggles are real.im glad i found this group im seeing more and more ppl have the same problems i battle with