Really solid advice! I’m 11 months post treatment. I had a very tough time for the first 6 months after treatment... 7/10 pain all,the time. I finally got referred to a pain team that changed my life. I still had throat pain so they did another operation to rough up the sensitive area to  reset the healing. It worked well. I did lose 53 pounds, I’ve restarted eating table food again and gained back 15 lbs.   when it was so painful and dark I reached out for help ( from a local throat cancer survivors group and my medical team. ) it took a while but it all turned around.  maintain a positive attitude ... believe you will emerge from this storm!  be patient when your patience is exhausted. be optimistic about returning to your life when it seems impossible to believe. i code blued a year ago today (Pulmonary embolism) and was revived and now a year later I’m a changed man who is working again and playing competitive basketball in old men’s leagues again.  I hoped to get to this point again in 3 years but step by step I’ve attacked each setback with a new approach.  it did seem to me that each week brought bad news. But in time each month ( brought good news and steady progresss has returned me to “ normal” life. although when I was in the darkest time ( the first three months post treatment) I needed to know that things can improve if I follow the path taken by other survivors.       ... View more

Keep on getting treatments. From my local Oral Cancer and my therapists, I learned that Most people had an easier time of it than I have. I was diagnosed a year with T4, N1, m0 P16 (hPV caused throat cancer. I had 33 radiation treatments and 7 Chemo treatments (cisplatin)... During the last few treatments I was at my low point. I had terrible mususctis, I got Thrush infections 4 times. Eating was like swallowing needles. Once the Thrush is rolled back by the meds, the eating pain is better and once my pain team got the pain meds right. We tried several dfferent pain meds, The pain team finally found what worked for me I added taking THC on top on the narcotics Now Its a year after diagnosis and 9 months post treatment and I'm cancer free and the pain is less. I'm back to regular life. Your focus has to be to do everything to be strong (day by day) hour by hour and get . through the pain and eat so you can live and let your body repair itself. I found I was dancing with the oral pain all the time. I wanted to live and return to life. You can't believe how much pain you can live with and emerge. (medication and meditation helped me . There are two books that helped me...managing pain before it manages you by margaret caudill. nd the miracle of mindfullness by thich nhat Hanh i totally understand the daily painful grind. but you can get through it. You want to kill that cancer as priority 1. you need to get and rest as priority 2. i know its really hard. you can life going through the pain Once the thrush is managed (it only takes a day or two for the thrush meds to knock it back.. this get a little better. Find those baby steps that keep you on track and get yourself through it. It's unbelieveable looking back what you can get through! You've got to figure out what works for you. but you can do it. most people don't have it this bad. My journey was much harder than most. I found the pain med combo that worked, The foods I could eat, and had CBD and THC in marijuana to help with the inflamation and pain helped me. You need to live cancer free. You need to eat. you need time and patience. you can do it first hour by hour, then day by day, then week by week. I found myself thinking of all I wanted to live for and focused on these people and experiences i wanted again. Craig Jacobson ... View more

I understand and your comments resonated with me. I'm 7 months post treatment (and cancer free so far) but I had 33 sets of raditaion therapy and 7 weeks of chemo. My mucicious and throat pain were bad until recently. I've now figured out how to eat and resume alot of "normal life".. My View of the entire journey is that There was normal me BC (before cancer) and there was me during tretments...(that was lot of medical appointments an a few trips to the urgent care and a few additional facts of my health situation coming to light... then there is me after cancer.. I'm discovering what theis nee me is all bout. The BC and during treatment me are in the past. I view "everything before now isn't something that is productive to think about ( and get depressed because o the loss of some ability) Instead I view the while cancer challenge created a chance to discover the new me. I have a new involuntary adolescence and My challenge is to discover this new me. If I focus on things lost in the past, I'll get emotional and lone for tasting food again. Being athletic again... I think these capabilities may return again ( or maybe they will never return) BC I loved red wine ( cabernets), red wine, and chocolate. And I loved hot foods. and egg dished for breakfast ( savory breakfasts) Now I prefer sweet breakfasts like pancakes. Now I cant stand the taste of those old favorite foods. I also wasn't particularly grateful about little things in life. Now I'm very grateful for every day and the love of my friends and family. I'm so grateful. SO I've got to discover the new favorites in food, drink, etc. Not focus on the losses ( my sense of taste) food and drink was a delight and no its a necessary chore. So what is helpful for me going forward is sorting out this new adult me. And laughing off the changes and sorting through this confusing 'involuntary adolescence' and trying foods and drinks. I was suffering from alot of throat pain even as recently as a few weeks ago. I have a solid pain team and i found a book that was helpful... Dr Margaret Caudill https://www.amazon.com/Managing-Pain-Before-Manages-Fourth/dp/1462522777/ I have been meditating and learning to live with chronic throat pain and a lack of taste. Your taking up guitar is probably your ways of exploring the new you. It seems like a great start. Find out I don't relate to the term "cancer survivor", Instead I am working through a second adolescence. I'm making time for things I didn't do before... Look forward with optimism. I know that can be challenging with another "The test is positive" ( Postive tests seem to bring me bad news). I know I'm very different from me a year ago... (when I was diagnosed). My old life is in the past. I'm learning about this new me with a sense of curosity. I'm re engaging with work and adult life outside being a patient. For pain management, I'm using the Rx the drs prescribe plus THC ( edible marijuana gummy bears) nd CBD ( seems to reduce inflamation in my throat). Now that I've figured out how to stabilize my weight loss by eating more. I have more energy and an interest in attacking problems again. My attitude is better because I have more energy and enthusiasm. I'd say that words of 'cancer survivor' doesn't help my thinking and actions. being someone who is recovering from a second adolescence helps me daily think about trying foods and activities. It seems to work for me. Let me know if this is helpful to you. ... View more

Like you I was diagnosed with squamous cell cancer T4, n1, mo on my tonsil and round base.. about 6 mm tumour.   I have had 33 radiation treatments and 7. Hemp low dose cisplatin,  treatment started nov 15 2018 until January 15the.  I’m now 5 weeks post treatment.   its been rough with the side effects, 40  pound weather loss, a pulmonary e,bolism ( PE) that nearly killed me, pneumonia, sepsis caused. Y sepsis enters bacteria, dehydration, and  a small brush with gabapentin withdrawal symptoms. all were Er. Visits...it seems like I get sick at nigght and then go home at 3 am after they figure out it the new challenge.   So much to learn that is new ....     im 5 weeks post treatment now and the mouth sores are better, I’m swallowing better. I’m starting to eat more... consuming more calories is mak8mg me healthier.. so even though I have no sense of taste yet.. I forced myself to eat this bland texture stuff called food.  People don’t understand how easy hunger and taste make it to eat more than a bite.   I have to force myself to eat.   my low point was 7to 8 weeks ago... I had a huge amount to phlegm ... I had trouble breathing, swallowing , and in time ( boy was I impatient ) is eventually became better.  Swallowing pains was at it zenith then,   but it as my oncolog team coached me.... be patient, follow the course and it gets better.   im now cancer free... so I’m delighted.   ill relate my experience, I know how hard this process is even with the best of support.  My wife and daughters have been there helping me at each step.  I had a stay in the ICU for a couple of weeks with the PE, dur8ng that time my precious wife of 31 years, slept in a chair each night , so as to not miss the doctor and nurse update they gave me ( but I was on strong drugs and would mess up what they told me.... i love her even more than our wedddibg day... such commitment and devotion, my daughter is a SLP speech pathologist and has been amazing .. there at the hospital dcod8mg what we are be8m* told and talking “ medical” with the docs and nurses and therapists... helping me navigate the system.   Overall such support plus friend dropping by with pre cooked meals ( not for me as I’ve been eating liquids like ensure and boost to get my calories and. Ow healthy 1000 calorie shakes every day.   if you are just stat8mg the process... add weight before treatment, line up your support team.  Cuz it’s glimg to be quite a ride but you can make it with patience.   on I’m 63 and live in San Diego us...   craig       ... View more

When my mucositis was at its worst I was in the hospital and a divine Speech language pathologist got me a yankower suction device and a suction cannister to "vaccum" the phlem out... I ad buckets of it. It was my savior device during that pase of challenge ( there are many phases of challenge for us)By the time I was released from the hospital the phlegm was better... I did order from And a home suction device ( which I never used)... Yes you must maintain your weight... I lost 45 pounds before I've stabilized my weight. I drank alot of Ensure and Boost and Soylent for nutrition. I'm still drinking it for calories. I worked for me. 2k calories is like 5-8 of these plus other food. My Doctors did get me IV saline for the dehydration and passing out from dizziness... It helped me stabilize until i could drink enough   ... View more