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If I have a big day planned, I automatically plan a rest day after, if I can. I still have other health issues, of course, but YES you can still be that tired. You're not only healing but trying to build back reserves, and you don't have any reserves yet ... so your body doesn't have any spares to pull from. So ... might have overdone it, might have done just enough, but you still need some time to recover. It's okay. It gets better over time, slowly, and you WILL see improvement ... but you see it better in retrospect, when you realize you just aren't as tired as you used to be.


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Mar 2018
Posts: 45
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Thanks KristenS! I know that I need to be more patient. It's just so hard when you feel so good one day and then not so good the next. It's frustrating! I feel as if I've given this cancer enough time to wreck havoc on my body. It's done it's damage and I am rebounding. Just not fast enough....


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Mar 2018
Posts: 45
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Another question to gauge health progress. 4 weeks out of rads and today was a weird day. Tired for morning and afternoon (took 2 naps) but had a little more energy in evening. But mid-evening, the roof of my mouth started itching REALLY bad and my tongue and throat were sore. Sore enough to take an oxycodone- hadn't needed one at all today until now.
When did others start to notice the pain go away? Does anybody else have the itchy feeling?! I am on an anti-fungal med. Wondering if the RO needs to up the dosage on it?

Also, for those of us that are still working, when did you head back to work? I know the answers will vary widely depending on your job, but was curious.

Thanks!!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Jun 2013
Posts: 346
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Well, I'm a homeschooler and a Scout leader, so my 'work' (and it IS work!) is at least seasonal. I didn't do any of the summer volunteer bits, of course. (My treatments were February and March, but had the feeding tube till June.) Eased into getting my strength back up. I *think* I started tae kwon do back that fall, because I have this vague memory of testing in November, which means I must have worked pretty hard during the fall ... I was high rank by then. I think I was well enough to go to meetings when we started back up for the school year (which around here is beginning of August), but I have two co-leaders for my girls, so they helped me a LOT, and I wasn't full leadership with the guys that year, just observing, so no major responsibilities there. (My job shifted with the boys during my cancer ... my son aged up, and I was trying to hold together my Pack from a distance while my son was learning how the Troop worked ... that was a disaster on many levels, but not pertinent here.) Because I did have support, things went pretty well, but I was able to take off as needed. Things were going well by the following spring, enough that we were going to take our girls on a great camping trip ... and that's the one that, two days before we were to leave, I fell and broke my shoulder. Yup. I live my life by Murphy's Law. But because we do have enough leaders, they carried on without me, and I spent another whole summer recuperating. Sigh. And then kicked butt in tae kwon do at the next winter testing, LOL. I may be a coward about pain, but not a whole lot actually fazes me in class anymore! (This highly amuses my instructors, as they can clearly recall my very first white belt testing, where I ran off the floor in tears because we had to spar and I don't like to hit people. Still don't.)

I'm five years out from my first diagnosis (which was mere surgery and none of the nasty treatments), and this is the first summer I was able to go to day camp as a volunteer again. It was hard, but I LOVED IT. I probably still wasn't fully ready for the energy drain (it is HOT here in Alabama, even in June), but I LOVED IT. I'm glad I waited till I was closer to ready. But the other volunteer events, like a February indoor event I work at, I was doing as soon as I was able, and since it's a sit-down skill I teach there (pocketknives), it was great. (And the other leaders keep a close eye on me to make sure I don't push me too hard.) I also went to a spring (ha!) training camp weekend series for Boy Scout leaders, ill-advisedly, and that was pretty cool too. However, my doctor is pretty peeved with me about that one, because it turned out that first weekend got below freezing and was raining besides ... the entire time! (And yes, we camped outdoors.) Someone tipped me off to the weather report, so I at least had time to scramble for a properly rated sleeping bag and gear before I went, but we also had been misled about the physical requirements, and my doctor and I both agreed that if we had known, he would NOT have signed off on the health form. Oops. But I survived, and I am actually very proud of myself, both for making it through AND for knowing, "This is my limit, and this is the point where I will have to tell myself to walk away and try again another year." (If it hadn't cost so much, I would have done that straight up.) The second weekend was rainy but not freezing, which was better.

Those anecdotes may have nothing to do with what your goals are ... but I use them to emphasize knowing WHAT you are aiming to do, and WHAT your personal limits are. I knew what I was trying to do, and how I could, or couldn't, manage to achieve them. I had some seriously eye-opening moments during that pair of weekends about lack of disability accommodation, even when I'd requested help and they were doing all they could to help me ... because I hadn't realize how much accommodation I still needed, or what to ask for. (My being in the middle of the oral surgery nightmare meant I needed food accommodations, which they did their best for, but I hadn't realized how SLOW I got at eating, and on their schedule, that just didn't work. I know better for me now, and I know better for other folks now too. Things like that. I needed calories to cope with the physical demands, and I couldn't get them.) My health situation may be more complicated than yours ... I also deal with panic disorder, migraines, and other stuff, some of which I had before the cancer and some of which came after (I think my body just freaked out on me after I broke my shoulder ... it had had enough, LOL) ... so I've learned to keep note of where I am in my coping phase, and when to stop and take a nap or six. You may not have to go that far, and certainly not five years out, I would hope ... but self-awareness is always a good strategy.

Oh, and I know, etymologically, what the name 'Kristen' is supposed to mean ... but I'm pretty sure it also means 'stubborn' and 'refuses to give up when saner people would' in some obscure language somewhere ... seems to go with every Kristen I've ever met. laugh So keep on being YOU, but be sure you know what your LIMITS are, so you can be the safest, best you that you can be! Just a tip from one Kristen to another ... Kristens unite! smile


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Mar 2018
Posts: 45
Contributing Member (25+ posts)
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Joined: Mar 2018
Posts: 45
Thanks Kristen for your information and experiences. Please tell me more about your OC. You say that your first diagnosis was just surgery? And then did the OC come back again? What happened after that?

I had my 4 week post rads visit w/ my oncologist and he was very pleased with my healing. I truly give all the credit to having a VitaMix and using my feeding tube as much as I have. Good nutrition has gotten me through. I also met with my speech pathologist and she said it's time to start eating more orally. It's something I've actually avoided because it just doesn't feel good. Although I have the MM, lidocaine gel and even lollipops to numb my mouth, it doesn't feel good. Food gets stuck below my reconstruction area, on top of the reconstructed tongue and I don't have the muscle function to move it around. I know that will come from me working on it, but it's not fun in the interim! Something I have to get used to.

Yes, the name Kristen does mean stubborn and refuses to give up! I can't tell you how many people are telling me to slow down! They are also reminding me of all that I've accomplished in such a short amount of time.

We cancer survivors are amazing! My oncology nurse said the only worse cancer to bounce back from is anal. I consider myself lucky!!!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
Joined: Apr 2018
Posts: 51
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Kristen, I think you may have some ups and downs for awhile. I'm over two months out and the week before last I was really tired and had my skin and scalp hurt. I tried to eat more protein and vitamins and am feeling more energetic. So I don't think it will be all of a sudden you feel great, give it time, as Christine (I think) said, each week of rads = one month recovery. I'm planning on 6 months to feeling almost normal and one year to see how much of my taste will come back.


Diagnosed 11/17 SCC right side of tongue
Surgery 2/18 Partial Glossectomy
Radiation 3/18 - 5/18
Clear PET scan 10/18
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Heres some of the things Ive learned over the years about the recovery phase (Of course, all patients are different and will experience everything in their own unique way. Some issues bother some patients more than others but then when comparing yourself to others, there are far too many variables to make an accurate comparison)... First,@ Denise you are correct. My doc told me one month for every week of rads when I was complaining to him when I wasnt back to my normal self a couple months post rads. The recovery phase can be VERY frustrating. Patients can never recover as fast as they think they should...NOT EVER! A complete recovery for those who had rads w/ chemo for OC will take a full 2 years. I know it sounds like its forever! The time goes quickly with most patients feeling pretty good about 8-12 months post rads. Patients can still expect to see (usually only slight) improvements in their sense of taste and saliva up to about the 2 year post rads mark. The ups and downs and setbacks can become annoying but soon you will be able to clearly see how much progress you have made. The setbacks will become less and less the further you get past when you finished rads.

Other things that can get annoying to patients during recovery is their sense of taste will disappear when eating. This can get annoying when what they are eating loses its flavor after only one or 2 bites. Around a year out many will have the majority of their taste returned. Patients can still expect to see (usually only slight) improvements in their sense of taste and saliva up to about the 2 year post rads mark. One thing to ask your doc about when they have you get bloodwork done during your recovery is if your thyroid numbers are being checked. If not, they should be! Most patients who have rads to their head and neck areas will run into thyroid issues. It hit me but not for a few years post rads. After everything OC patients go thru having their thyroid not functioning properly usually isnt a big deal. Thyroid levels being off just requires patients to take one tiny pill a day. To me its not a big deal considering everything else everyone here has been thru.

@ Denise, you may want to ask your doc about your thyroid levels next time you have bloodwork ordered. Being about 2 months post rads is still pretty much the beginning of your recovery phase. Im sure you are able to notice some improvements and will continue to do so. Fatigue was one thing that really got to me! No matter how much I slept, I was still exhausted and could go right back to sleep. Fatigue is also a sign of your thyroid not functioning properly.

Protein helps to speed healing. Ask your doc if its ok to add some whey protein powder to your diet. Theres an unflavored one that can be added to shakes, soup, smoothies, even to the formula for feeding tube users (easiest for those who use the feeding pump). I think its Bob's Red Mill brand that I get at my local wegmans, it comes in a light green bag in the organic dept.

Other than hitting your daily intake minimums, avoiding crowded public places, staying away from sick people (elderly and young children seem to always get sick), frequent hand washing, getting the best balanced diet that you are able to consume, resting when tired, managing pain levels, PT if necessary, and following doctors orders, unfortunately theres really not much that can help get you past the recovery phase any quicker. It takes time... wayyyy too much time!!! Ive picked that up from all the OC patients Ive been in contact with over the years. We all can agree the whole ordeal from diagnosis til we feel we're back to our original selves (as much as it is possible) seems to take an eternity. On the bright side, we all are in this together and we all understand where you are coming from. At least the worst of everything is behind you smile Hang in there!!!





Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Amen to all that.

Christine is right! (She's a variant of a Kristen too, remember, so she has the stubborn patience to keep us all on track with our nutrition and make us be safe with our recoveries!!!)

And yeah, my thyroid went out too. My radiation doctor had the nerve to blame it on me, as if he thought I was going to try to blame it on him and he wanted to get there first. He said it wouldn't have happened if my thyroid hadn't been weak to start with ... I highly doubt that, but whatever, done is done. And it did impact energy levels a lot. I don't see a ton of improvement on the meds ... but I sure see a problem when I miss the meds! My B12 plummeted too, but that we think was related to another issue. So I get shots for that.

Kristen, you asked about my first and second diagnoses. The first one was May of whatever year that was, 2013 I think. It had taken all year for the doctors to figure out whatever it was, wasn't gonna heal, so the ENT said, "Let's do surgery, give it a fresh start to heal." Not sure if he was already thinking cancer but not telling us, or if he didn't know either. But he did have the sense to have it biopsied during the surgery while I was still out, so he was able to keep going and get clear margins ... and it took him several tries. I woke up to a lot less tongue than I'd expected, and the news that it was cancer ... which had NOT crossed our minds till that very minute.

However, we were pretty sure he'd gotten it all. He still wanted to do a neck dissection to check for lymph node spread, even though it wasn't indicated on any tests or scans. Not knowing better, I consented to it, and that was in August. All was clear. In December, a sore came back in pretty much the same spot we'd first operated on. Recurrence already. (I do still think he got all of it the first time, and it really was a recurrence. My mother is inclined to blame the surgeon for missing something. But we're talking dinky tiny cells, and blame in that case is futile.) So we did more surgery, and then all the doctors got together and decided chemo and radiation were the way to go, because that quick a recurrence can't possibly be a good thing. And I was scared, and there we were, and .... here I am. I still have more tongue left than some folks have after even one go-around, so I'm lucky in that regard, but the fatigue is still very real, and I still have to pace myself carefully.

Which is why I cheer you on to do things, but TOTALLY second everything Christine and others say about also not getting too ahead of yourself, because this stuff sneaks up and smacks us when we're not looking. We fall, we rest, we pick ourselves up and keep going. I was dealing with chronic health issues for over ten years before the cancer, so I'm used to being knocked on my butt and having to reset my expectations, though not to this level of severity (I was actually getting better before the cancer, sigh), but hopefully it's not something everybody already has life experience in. frown

Hope that was coherent. After midnight on a migraine day, but it's probably pretty close. smile

Last edited by KristenS; 07-21-2018 11:15 PM.

Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Joined: Mar 2018
Posts: 45
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Mar 2018
Posts: 45
Hi Denise- thanks for the reminder of healing. It's a very looooong process! My friend who is a retired oncology nurse said that I need to give myself a year to really feel back to normal. But the salivary and taste could take longer. We tend to run out of patience, don't we?!

I'm working on it!!

Glad you are feeling better. I'm Week 5 post rads and doing okay. Some days are giving me more energy and I'm loving that!


Kristen S.
Stage 3 SCC Surgery 2/18
35 radiation treatments-completed 6/18
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