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what did life look like 5 weeks after treatment? #197560
11-09-2018 06:09 PM
11-09-2018 06:09 PM
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ConnieT Online OP
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ConnieT  Online OP
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just wondering how things looked for others. were there still lots of struggles? tired? getting back to normal a bit?



Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: what did life look like 5 weeks after treatment? [Re: ConnieT] #197563
11-09-2018 07:25 PM
11-09-2018 07:25 PM
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KristenS Offline
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I was still sorting things out. Still on the feeding tube, still fatigued, still limited on what I could do. The rest is hazy.


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
Re: what did life look like 5 weeks after treatment? [Re: ConnieT] #197564
11-09-2018 07:31 PM
11-09-2018 07:31 PM
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ConnieT Online OP
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ConnieT  Online OP
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thanks Kristen. Just checking. Husband is still in bed, hasn't changed clothes for about 2 weeks now. not sure how much he is doing feeding tube as I am done helping with that after 3 months of resistance to using it. He's not eating food as he won't swallow. My guess is the tiredness is from lack of nutrition but maybe some of it is normal.


Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: what did life look like 5 weeks after treatment? [Re: ConnieT] #197565
11-09-2018 09:35 PM
11-09-2018 09:35 PM
Joined: Jun 2013
Posts: 317
alabama
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KristenS Offline
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Posts: 317
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Some of it is very normal, yes. Still healing from the radiation ... it takes a LOT out of a person. But he'll get to a point of eating at some point. Not your worry.


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
Re: what did life look like 5 weeks after treatment? [Re: ConnieT] #197567
11-09-2018 10:49 PM
11-09-2018 10:49 PM
Joined: Jun 2017
Posts: 30
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Magnum Offline
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Joined: Jun 2017
Posts: 30
I know those treatments absolutely take a lot out of you and it could be up to a year before he's totally back to normal. I know I was 3 months out from my last treatments (cisplatin, rads) and I couldn't even shower without the help of my husband - I had no energy! It came back slowly - when it got to the point that I could shower on my own I still didn't have the energy to dress and comb thru my wet hair. Like I said, it'll come back but slowly and, to me, at baby steps.

When does your husband go back to his oncologists, etc.? Definitely let them know what's going on (or not going on) regarding the nutrition. It sounds like you've been put through some unnecessary battles but....cancer thrives on the malnourished and the weak. It takes good nutrition along with proper amounts of sleep to give your body what it needs to continue battling cancer.

Is it possible for you to get help from a home health aide? Some insurances will pay for that service. I would check into it. Let the health aides deal with the frustrations you obviously have but please, do whatever you can to not give up on your husband's nutrition and his personal hygiene. You'll be thanked when he's back to being his normal self.

Just my opinion....


Susan
04.12.16 1st surgery; rt partial glossectomy; neck dissection; 2/38 lymph nodes positive
05.12.16 Resected T2, N2b, M0
05.24.16 Rad, Cisplatin
10.03.16 Clear PET
04.11.17 Clear PET
06.09.17 1st recur
06.21.17 2nd Surg: rt partial glossectomy; forearm free flap; rt thigh skin graft
11.09.17 2nd recur
11.30.17 Nivolumab
02.06-16.18 Brachytherapy
06.12.18 3rd recur
06.12.18 Lt axillary lymph node SCC
07.05.18 Pain pump placd
08.23.18 Pump removd
10.29.18 PET-CT responds to treatmnt


Re: what did life look like 5 weeks after treatment? [Re: ConnieT] #197568
11-10-2018 07:20 AM
11-10-2018 07:20 AM
Joined: Jun 2007
Posts: 10,303
PA
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ChristineB Offline

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Hi Connie! Im sorry to say but unfortunately it sounds like your husbands lack of adherence to his intake is catching up to him. Paying attention to every single sip and bite can become monotonous and tedious but its whats necessary when going thru such a serious medical condition. None of us wanted to do everything we were told to do. For some who are not used to following directions it must be very difficult and overwhelming. Being the patient going thru OC treatments and recovery is so very difficult!!! Being the caregiver to me sounds even harder, especially when it comes to patients who are a bit challenged when it comes to doing things their told. Your situation Connie is a perfect example of the "everybodys different" phrase thats used so often around here.

For every week of rads, patients need at least one month of recovery which is how my doc explained it to me. The recovery phase is rough!!!! Its full of ups and downs and a few setbacks thrown in when least expected. A patient that does not adhere to their required intake amounts every single day quickly finds themselves in a vicious cycle of feeling absolutely horrible, they're fatigued and spend considerable amounts of time sleeping. The problem is they arent taking in enough calories to sustain their normal bodily functions then throw on top of everything their body is trying to rebuild itself without the right equipment (calories and fluids). By limiting his intake so dramatically he is not only obviously losing weight, hes losing muscle right along with it. Patients who dont focus enough on their intake can find themselves with other serious medical issues such as cachexia, kidney damage, malnutrition, dehydration as well as depression and digestion issues. Plus the longer those swallowing muscles go unused the harder it is to regain being able to swallow properly without aspirating which can lead to aspiration pneumonia. My personal feeling is feeding tube SUCK!!! But they are a necessity to obtain enough nutrition on a daily basis. Without using it when not able to swallow is like he is starving himself and its being done at the worst possible time. Your husband knows all of this (or at least moist of it), but he is unable to process just how vitally important intake and hydration are. They are a necessity to life and if he wants to improve his current condition hes going to have to make up his mind to do things he doesnt like doing including listening to his medical team (and of course you). At some point all patients must face the fact that they themselves are in charge of their choices and its up to them to do whats necessary to survive. As an excessively stubborn patients caregiver, I imagine you must have an abundance of extra stress and the weight of the world on your shoulders watching your husbands continued resistance to everything thats mandatory. Ive noticed over the years, patients who are very independant have the hardest time "letting go" and allowing themselves to be the patient needing to be taken care of. I can understand stubborn patients as I wasnt the best patient needing to depend on my teenaged children to care for me. This which wasnt something they knew how to do as I was always the one in charge who took care of everything in the household by myself. We all had a hard time of it! Maybe your husband isnt able to see the entire picture and how this affect everyone close to him? It could be a million and one smaller issues that have led up to this moment. As some point all patients are forced to face their own mortality which is one of the hardest things when going thru cancer. Its been compared to the stages of grief. Until the patient opens up to think thru it they will not improve or change their habits. PTSD has also been a side effect of living thru cancer.

Im sorry I got so far off track!!! Basically its up to your husband to wake up and stand on his own 2 feet knowing he is responsible for doing whats necessary to get thru the recovery phase. Unfortunately the stubbornest patients are the ones who suffer the most. At 5 week post rads some patients are beginning to go back to their regular lives by slowly returning to their old routines. I returned to work part time 6 weeks post rads. Was I well again.... NO!!! Just driving back and forth to work 45 minutes each way was just about all I could manage a day at that point but after a few weeks I began to take on more and more of my former job. Im certain your husband would love to regain his former routines so when he wakes up and starts doing better with his intake he can then feel well enough to return to work, maybe starting on a part time basis for the first few weeks. Many patients 5 weeks post rads are also feeling very frustrated by their lack of significant progress. A complete recovery from what they've gone thru takes an entire 2 years until they have their sense of taste and saliva back 100% or at least as much as they will get of it. Even around the 2 year post rads mark some patients have reported more smaller improvements with their saliva production and sense of taste. Its not easy eating when everything tastes so bad and your mouth is so dry your tongue sticks to the roof of your mouth. Like everything.... it just takes time (and of course calories/fluids). The more your husband helps himself to improve his intake the quicker he'll feel better and be back into his old routines. Its optional, completely up to him. Until he fully understands the big picture that his recovery and adherence to intake requirements are what he must do then he wont improve, he'll get even worse and end up hospitalized again.

Im sorry Connie!!! ((((HUGS))))


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
Re: what did life look like 5 weeks after treatment? [Re: ConnieT] #197569
11-10-2018 10:35 AM
11-10-2018 10:35 AM
Joined: Aug 2018
Posts: 222
C
ConnieT Online OP
Gold Member (200+ posts)
ConnieT  Online OP
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Joined: Aug 2018
Posts: 222
I appreciated every word you said Christine and all the rest above.

To some extent, I'm an outsider on this cancer journey so my perspective might be different from others going through this as the patient or caregiver but I will share anyway as I do know there are likely others on a similar path as mine but maybe not coming forward and expressing it.

My husband has isolated himself from family, friends, etc for over 25 yrs. I can name the date he made that decision. It was the day I brought our son home from the hospital. He shut down, isolated himself. I do not know why, I've pondered it for years. He has a son that was 6 yrs old who was his world and that had never changed until he got cancer. The son is 31 yrs old and there is a whole story behind his life! But even the beloved son is being rejected and he is tired of this charade too. He says we can't help him as he refuses to help himself and he takes it out on us that he is suffering and will not accept help. I can add that the doctors and nurses are at that same place....done.

Having been disreguarded for 2 decades and then having to take care of someone who has done that to you....well, let's say if I didn't have my faith, I would have left him for sure over this but I did not. I have not doted on him or sat by his side day by day but met his needs as much as possible. I still had to endure controlling behaviors, mean comments, etc. It's been hard and I have such a wonderful support system with friends that I am blessed. And while I am the one to try to meet others needs, I have graciously been accepting money and gifts from others who want to help us. Who am I do deny them blessings for helping someone else? I was worried I would feel prideful accepting gifts but I am so thankful that others can see us through this trial.

I told him recently that pride would kill him before cancer would. It's just the truth. When we are given the tools to success in life and in this case, get well, and we don't use them, we can blame no one else but ourselves when we don't get the outcome we wanted. As he has always chosen, he wants to find the quickest way to the front of the line. This time....there is no quick way to the front of the line (meaning back to healthy) without taking the baby steps. He refuses to accept that truth. He wants us to drive and get him fast food while he refuses to try to swallow yogurt or soup. My dad told him years ago that as a child, you have to start with baby food, you can't have meat right away. but he wanted to have best RIGHT NOW. He wasn't willing then or now to do the work to get to the best. I never dreamed how on point that comment would be in husband's life.

While I have shared much intimate info about my situation, its not a sudden event really, it's been decades of the same ole same ole but now it's hit the fan. I have read each comment and pondered them as I know many here have wanted to help me out. I've garnered so much information that has guided me. My greatest obstacle has been separating health from control issues on this journey because in the long run, I have to take care of myself first before I can take care of someone else.

Thank you for reading about my journey and I'm hoping it helps someone else know they are not alone.

So here's where we are at: he keeps asking for the keys to drive himself to buy food. I will not allow him to have keys as he is dangerous to himself and the public. I've got foods in the fridge he could eat like mashed pototoes, cheese cake, yogurt, soups. He's too prideful to eat those foods....he doesnt' want baby food, he wants meat! He thinks he is going back to work shortly but cannot figure out how to get into his computer easily. He cannot stay awake more than an hour or two at a time, sleeps most of the day. He does not leave that bed except to go to the bathroom maybe once or twice in a 24 hour period. He will do nothing to help himself.

The older son and I have decided that we have to let him sink a little to get past this pride obstacle. Neither of us are willing to take the verbal slander to help him. some might judge us but it's a long pattern that needs to stop. I told the nurses I would call to have him admitted in the ER if I saw him turn gray or look bad. I'm not just dumping him along side the road but there comes a point where a person needs to find the drive to get well and be willing to do what it takes to get well. We've tried for 3 months to help him find that and it seems to be enabling him rather than helping him.

The oncologist waived doing a CAT scan and PET until mid December. The original plan was to do one 4 and 5 weeks after treatment but after the last appointment, the doctor decided to wait. He was disgusted at the rebellion my husband has shown during and after treatment. So we have no idea how he is healing or not healing. He was doing so much better the few days he did all the feedings. The cough was almost gone. Many of the old symptoms have returned this past week. He is still dealing with nausea as he will take the meds but he takes them immediately before eating. So when he throws up, he says the meds don't work. Duh!

May my words be a lesson that says what Christine has preached many times but said in a real life way.....follow the doctors orders! They know what they are talking about and if you chose the short cut, you are choosing the long and hard path.


Last edited by ConnieT; 11-10-2018 12:31 PM.

Spouse of 56 yr old with BOT cancer
Stage 4a HPV16 positive
3 chemo treatments cisplantin
35 radiation treatments 7000 cGy
former smoker/chewed tobacco for 38 yrs.
Re: what did life look like 5 weeks after treatment? [Re: ConnieT] #197587
11-11-2018 03:23 PM
11-11-2018 03:23 PM
Joined: Jun 2017
Posts: 30
M
Magnum Offline
Contributing Member (25+ posts)
Magnum  Offline
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Joined: Jun 2017
Posts: 30
Connie,

I don't think anyone in these Forums would pass judgement on you. It sounds like you've been going through a lot and no one else knows how bad it is because we're not the ones living it.

Hopefully, once he hits rock bottom, he'll start listening to you, his doctors, etc.

Please keep posting....


Susan
04.12.16 1st surgery; rt partial glossectomy; neck dissection; 2/38 lymph nodes positive
05.12.16 Resected T2, N2b, M0
05.24.16 Rad, Cisplatin
10.03.16 Clear PET
04.11.17 Clear PET
06.09.17 1st recur
06.21.17 2nd Surg: rt partial glossectomy; forearm free flap; rt thigh skin graft
11.09.17 2nd recur
11.30.17 Nivolumab
02.06-16.18 Brachytherapy
06.12.18 3rd recur
06.12.18 Lt axillary lymph node SCC
07.05.18 Pain pump placd
08.23.18 Pump removd
10.29.18 PET-CT responds to treatmnt



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