Cancer-Free: The Journey Beyond Remission
Vložit
- čas přidán 14. 07. 2023
- Join me on my journey beyond cancer remission as I share my experiences and tips for living a fulfilling and healthy life after cancer. I hope to inspire and support others who are also on this journey. Together, we can thrive after cancer!
This is a look at some of the possible long term effects of cancer and cancer treatments. By recognizing that these effects can occur and preparing ourselves mentally and physically we are able to not only survive cancer, but thrive as well.
Cancer Support Groups:
www.cancer.org/support-progra...
cancersupportuk.org/
csn.cancer.org/?_ga=2.2266841...
www.indiancancersociety.org/w...
I would like to begin by thanking you for opening and sharing your cancer journey. It has helped me through my own journey. Back in April of 2023 I too was diagnosed with Squamous Cell Carcinoma. I am a little more than halfway through my treatment. I was not entirely sure I would make it this far, but through sheer determination and an incredible support system of family and friends, I have gotten this far.
I also credit your videos for helping me understand what to expect. Thank you.
Hi Vanessa,
It's very gratifying to hear that my videos have helped you in your cancer journey. Congratulations on getting through the journey! It is a tough road, but it is certainly doable.
Lee
Hi my name is william i have been watching your videos for a while now this one is my favorite keep up the good work
Hi William,
I'm glad these are helpful and I will keep right on pumping them out!
Lee
Another good one to make you think. I have two more rad treatments to go. As I'll be 70 in September I had already prepared by determining that I'll be moving into a senior building close to my son 1800 miles away in Montana where I can walk to everything so I could give up my car. Haven't seen all final bills but Medicare and supplement should cover most everything. Spent 7 hours in the ER after treatment for dehydration which is now managed by my medical oncologist. It wasn't until the Rad doc asked that I had even been told about a medical oncologist! Pisses me off as I could've avoided the ER altogether. Such is the cancer care in Arkansas. At this point I am beyond exhausted, dream of being able to eat food, hungry all the time, hurt all the time and pain meds all the time. I wouldn't be able to make it without my cousin and her husband who insisted I stay with them as unlike what Arkansas docs told me the last two weeks I've not been able to drive myself to and from rad appointments. I suspect rambling is an after symptom. Thanks and for all your videos that really help.
Hi Pete,
Number 1, what part of Montana? That is my absolute favorite place in the country. It sounds like you pretty much did/had everything I had. The only difference was I did 5 days in the hospital for malnutrition and dehydration. Like you I dreamed of real food, drink etc. and seemed there was always something aching, hurting etc. You are getting over the hump, keep a positive attitude and recover quickly so you can enjoy that Montana air!
Sincerely,
Lee (The Jealous)
@@theregularguy141 Hi Lee, Missoula is where my son is and fortunately the senior building I'll move into is within walking distance to everything I'd need and want and just a mile from my son. As soon as a place opens up he'll come and drive us up there from N. Mississippi where I'm with family now. Just getting through this final phase is super rough as you know. The oncologist said they may need to put a feeding peg in me so I'm trying to force boost and water as much as possible. Thanks so much for responding Lee.
Thank you for all your videos. You have helped me in my recovery. I'm almost a couple of months into recovery. I do experience cancer brain a lot. Forgetting things I thought I would never forget. Like peoples names. Another symptom I have a Lot is fatigue. I'm up for two or three hours and then I find myself going to sleep. I really feel like I need the sleep for my body to repair itself so it doesn't really bother me. And, my doctors told me I would be experiencing this. I have not let this experience frighten me or depress me. I just took it as what it is, an illness. I had head and neck cancer and my doctors told me I would survive it. I have had a CAT and PET scan and my primary cancer doctor wants to remove my lymph node in my neck (the one that was swollen) and I will have that procedure in about two weeks. I will be glad to have it removed and continue my recovery.
Hi Deborah,
I'm feeling the same. It seems I cant make it through a day without a nap and like you I find myself forgetting small things and losing focus. Let us know when you are having the surgery and here is hoping that it will go smooth!
Lee
@@theregularguy141 Isn't it '! Today I was buzzing around cleaning and all of a sudden all the energy seemed to drain out of my feet. Oh well it will all wait for me so I'm not worried. I definitely will let you all know the date for my surgery. I am in very capable hands- best ENT in the state of Texas will be taking care of me. And thank you!
Chemo brain not canc er brain tis from the treatment not the cancer!
Yes, I feel short term memory is effected and worse when I am tired from the fatigue. I went back to work and realize that my norm was to work like a maniac just straight through the day. If I can take the time to rest, even 15 minutes, it helps me rebound. The eating is going slow for me. 9 weeks out. Still swelling and an area of ulceration from the radiation. I am just trying to adjust to my new norm and be grateful.
I get the same way, it seems, not just tired, but by the end of the day, I'm exhausted... My memory and focus have also taken a hit.
Lee
Hi m8 I have just been through chemo and radiotherapy on my neck I have tounge cancer I just had my post treatment scan and have my results on 9 august but I’ve developed lymphedema in my neck and I fear that cancer might have spread it’s a scary process the whole journey you’ve been a massive help to me and gave me hope ,thankyou m8 glad to see you’re well
Hi Jimbo,
Thank you so much for the kind comments, I am truly glad that I could be of some help for you. Keep plugging along and doing the work and as always keep us updated.
Lee
Hi Lee and Lees CZcams followers, I had my surgery last week to remove my right lymph node. I did very well considering the radiation treatments I had caused a Lot of scar tissue to form around the node. Not much pain at all. If you get this kind of surgery expect to go home with a drain tube from the incision. He removed that this past Monday. He doesn't have the pathology results yet to see if I had any cancer left there so I'm patiently awaiting his call. I'll let you know what he says. Lee you are a good teacher and I encourage you to keep this up. I learned a lot from you.
Thank you for the "Good to Know Info" Deborah! And thank you so much for the kind words!
Lee
Been ok with Lymphoma treatments got dentures 6 months after radiation therapy infusion and chemoHad the Supragollitic carsoma
Still kicking eating without peg tube 2 months eatingbest I Can
Small strides getting better
Swallow is slow and limited
I've had the front half of my tongue removed and reconstructed. I could only handle 9 treatments. I think I had a yeast infection or something before I started. Anyway, I can never get past a moment without the feeling of having the false tongue in my mouth, and will the cancer come back?. How will I ever get through another surgery. I've had three already. My energy level comes and goes due to not eating what I need for proper nutrition. I can't taste in the front part of my mouth. But despite all of it, I am grateful to be alive. It could have been worse. Thank you for all your help in your journey. God bless
Hi Donna,
You have certainly had a difficult journey and hopefully one that has a positive ending soon. I'm certainly glad to hear that my videos helped. Keep us updated on your journey.
Lee
Thanks for your videos. They are very helpful.
I'm glad you found them helpful and you are certaqinly welcome/ Thank you for the kind words!
Lee
Tomo i will go to ENT.. am praying god hope it will come positive... coz my mental health is very weak rightnow..
Hopefully you will have a good result tomorrow! Fingers crossed it will be a stubborn infection and nothing more serious!
Lee
12 months after last treatment for me. My memory was never great, but it has worsened for sure. I blame a combination of treatment and getting older (52 now), but I also notice I'm not nearly as sharp as I once was, as far as learning/understanding new info. On the bright side>>> I can finally eat things other than pasta and soup (feeding tube for first couple months of recovery then liquids by mouth for next couple months, then soft food for next 6 months and recently able to swallow bread and meats (still very difficult)). Thats been my stage 4 throat cancer recovery journey so far. Oh yeah and the constant fear of it returning in the back of my mind.
You know I would love to blame the treatment completely! I turn 60 in August, so I guess I can attribute some of this to old age. It's awesome that you are slowly getting back to eating normally. How are your taste buds coming along? As far as that fear lingering in the back of our mind, yeah, that's there. I think it will always bet here lurking in the shadows..
Lee
My taste is back but definitely not back to normal. Spicy is still spicy and sweet is still sweet but everything is just DIFFERENT. @@theregularguy141
Hey Lee, thanks for the videos they helped me out alot in understanding my treatment and seeing your results gave me hope. i had my 3 month scan last week and got a complete remission update. they say 1 lymph node looks a little dirty or clouded up might be scar tissue from radiation but there was no uptake on the scan and it didnt light up as cancer so they say theyre gonna just watch it. sort of made me think about a 2nd opinion so im gonna check the insurance and see if they will cover it. but anyway thanks again for the videos keep up the great work helpin people out in their treatment.
john
Hi John,
I'm glad that your scan came out clean. From what I understand it is not terribly unusual for the scan to show a bit of scar tissue. Keep us up to date. And thank you for the kind words!
Lee
(settles down to listen) ......My guy is having cognitive....memory, multitasking...he now seeks calm and quiet where chaos didn't bother him so much before. He still has the feeding tube and recently had to have the initial one replaced...he's still not able to swallow properly enough to avoid getting stuff in his lungs. Just hanging in there and waiting for this to ease...
It's the worst....ugh. I seem to be having some of those issues as well. As far as the swallowing, I still need to pay attention and drink lots of water to make sure it all gets down the right pipe. Since I was having those issues, about 6 months after treatment, i went back to my gastroenterologist and we did a swallow test and I have since been diagnosed with GERD (Gastroesophageal reflux disease) that is a direct result of the radiation therapy. I'm hoping you guys will see some serious improvement soon!
Lee
@@theregularguy141 Right, yeah he just did a swallow test and it showed that stuff was going into his lungs... and thanks, yeah we're hoping for it to improve soon too...
I too am having trouble swallowing had the swallow test done and my esophagus is swollen, the flap that allow food to go down is swollen so when I try to swallow my food or drink want to go down the wind pipe. Still can't taste all that much, can eat some yogurt,and pudding, can't do the applesauce all that well, water is a bit tricky. My treatments ended on may 5th, both chemo and radiation. How long roughly before I can taste and swallow? Roughly
@@rebelyell1346 Hi Rebel,
I’m going to say around 6-8 months before my taste felt closer to normal. Probably a year before I felt like I had recovered as much taste as I was going to get back. The esophagus swelling and epiglottis, was about 4-5 months.
Lee
Hello! I have just found your channel. Watched some of your videos but could not understand, did you have a surgery before the treatment?
Hi Alexander,
No, no surgery. A discussion with my oncologist, surgical oncologist and ENT surgeon, they felt that the surgery was not necessary.
Lee
I have trouble searching for words for the most part. I know what I want to say, but I can't think of the particular word. Most times people can help me out, but its still frustrating.
I do the same thing. It's maddening.
Lee
10 months after treatments and still suffer the side effects you mention plus increased mucous secretion and reduced immunity. The key words for all new cancer patients is survivorship. I explain to people take letter sized piece of paper and fold it in half. List all of treatment, post treatment and survivorship issues on one side of the page. It's quite a long process. Now on the other side of the page list all of the things that would result if you don't do the treatments. There is only one I could come up with!
The reality is you have cancer, get as physically strong as you can before treatment, Get mentally strong by researching your type of cancer and prepare yourself for the fight of your life. Your new full time job is to survive.
A sense of humour and honesty goes along way with treatment and recovery. It helps you deal with the realities of struggle you will face on your journey and comfort your caregivers. My surgeon asked me after treatment, "so after removing half the side of your face to remove tumours( 5 hours of surgery, not to mention 3 more surgeries to correct some of the problems that arise from the 1st surgery), poisoning you with chemo and setting off a nuclear bomb in your head how ya doing? My response was thanks to him better than I deserve.
Hi Cracker,
What a great attitude to have and really good ideas and suggestions. You are so right about everything you say. Kudos to you for having such a positive outlook!
Lee
Hi Lee, I just stumbled across your channel after researching various head & neck cancer treatments and expectations. I was recently diagnosed with something similar to what you stated only mine is on the right side. I have been told I fit the stage 3 criteria based on clinical diagnosis. I was informed that my recommend treatment will be a Radical Tonsillectomy and a full neck dissection. This would need to be followed by 6 weeks of Radiation Therapy. I was curious if your treatment involved surgery, and if, not, was that an option you decided against?
Hi Fred,
At first I was convinced that a quick neck surgery and tonsillectomy would resolve the issue. As you can see, my expectations were proven to be incorrect. I asked the surgical oncology ENT if he thought that I would need the surgery. Due to the size of the tumors and location, he, along with the rest of the oncology team, determined that surgery would not be necessary. I admit, I am not sure where that line is that determines when surgery is necessary. Are they recommending any chemo at all?
Lee
@@theregularguy141 Hi Lee, Thanks for responding so quickly. No, they are not recommending chemo yet. The team seems to think that removal, followed by the radio therapy, should kill any residual cells. I'm not sure how I feel about any of it, to be honest. From my research chemo takes a toll on the body more so than the targeted area involving radiation. At first, my team was advising one modality (surgery or radiation) based on the PET/CT, then when the biopsy report came back, it became surgery and radiation. Not sure which protocols they utilize here. I am currently in Kuwait.
Fred
@@frednewsom1840 Chemo can definitely take a toll, for sure! It sounds like they have a good solid plan for your treatment. Please keep us updated on your progress,
Lee
@@theregularguy141 Hi Lee, just a quick follow up; I am 16 days post-surgery waiting on the final healing process for my throat before I can meet with the radiation therapist and start that process. It turns out that during my surgery, my cancer was more advanced than they originally though based on the scans. Stage IV, so my surgeon opted to stop cutting when she got as close to my voice box as possible opting to leave me with speech capability rather than removal. My neck is still swollen from the dissection on the right side, and I have some residual ear pain similar to an ear infection, which I hope will fade away over time because it is quite annoying. Given the discovery during the surgical procedure, it has been confirmed that I will need chemo also. I just made it to the point where I can eat most solid foods again, although sometimes I have to concentrate on swallowing it to ensure the muscle pushes it all the way down and it doesn't just hang out in the back of my throat. Also, exactly as you stated, my saliva output is nowhere near what it used to be, so I am constantly sipping on water and have that dry tickle feeling to cough or clear my throat often. At any rate, thanks again for your informational videos, they have helped me prepare for this fun fest.
Hi you said your tonsil.. did you see any difference on your left tonsil before cancer?? Like white dots or something
No, nothing different at all. It was only after the diagnosis that noticed swelling on the actual tonsil itself, but I was never really looking for it either.
Lee
@@theregularguy141i am having excess mucus on throat mild difficult swallowing.. doctor dissmissed allergies.. she said your tonsil not assymetric.. thats only am asking... your tonsil assymetric??
@@mommystips9998 I have to admit, I never really looked until the diagnosis and then I could see a radical difference. I'm pretty sure that the ENT could tell a difference before that. But in all honesty, I never looked.
Lee
hi my name they call me ray 15 months after soft palate cancer just getting my taste back
Hi Ray!
Wow 15 months after treatment and getting your taste back just now? Wow, what a journey. How are you otherwise?
Lee
Good day sir !
Is everything ok with you?
As I speak and write in Portuguese ( Brazil ) I don't understand what you are saying, but I hope you are well.
I know the journey is not easy
Hi Carro,
Yes, my friend everything is fine with me. I am doing very well. I will try to figfure out a fix for getting the CC into different languages.
Lee
the way you regular guy describe issues with a lot of sense of humor is incredible, wish you all the best and greetings from Kenya.
💪💪
Thank You very much for the kind words! The best you and Kenya as well!
Lee
Hey Lee
This is the reality I'm facing right now. The reality of the side effects and tablets to control them.
Plus now I'm slightly deaf in my right ear and fitted with a hearing aid.
So these are some things that 🤔 I have to deal with
Hi Faith,
That was something I left out (by accident), the deafness that can be caused by Cisplatin... That has to be tough. How long ago did your treatment end?
Lee
@@theregularguy141 February 21 2020
@@theregularguy141 the radiation therapy is the cause of my hearing loss 📉
Stage lll fallopian tube cancer. Late payment to Sandia Federal Credit Union ABQ NM
Have told bank med diagnosis. Payment doubles, receiving threatening letters and phone calls
Mistake due to chemo brain. No humanity! I have financed 2 cars paid off and CD with this credit union .
I have sent payment March 4 thru Wells Faro bill pay.Payment due March 18 for Sandia Federal Credit Union.
You know Denise, a lot of people don't realize how chemo and radiation effects survivors like you in the long term. They think that once you have a clean scan it's all good from there. They don't see those effects or understand them. Keep working with your bank and if necessary work with an attorney to get some relief.
Lee
There is no Life After Cancer. 99 percent of the people that have or had cancer died after maximum 5 years. My wife had the best treatment and doctors here in Israel and after 3 years of heavy fighting she have a few months to live!Don't fool yourself..... Cancer is fatal......
Luciano,
I am so very sorry to hear about your wife. Sometimes despite having the best doctor's, most advanced medicines, therapies and care, cancer does win out. Unfortunately the very nature of cancer and it's mutations and personal nature make it a truly horrible disease. Again I am so very sorry.
Lee
@@theregularguy141 Thank you Lee... i can't stop crying .. a wonderful woman and a great 38 years together make my very very sad.Once again,thank you for your kind words.