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#194671 - 06/19/17 05:04 AM Stuck in Transition Post Treatment  
Joined: Sep 2016
Posts: 9
wheeliegal79 Offline
wheeliegal79  Offline

Joined: Sep 2016
Posts: 9
My hubby finished his SCC BOT treatment in February and is recovering fairly well. First follow up CT scan 3 months later was clear, next CT scan will be in November. He will try to return to work as a substitute teacher this fall. He is also applying for SSDI and has some other medical conditions that may also help him for those benefits. All is appearing optimistic so far, but we are both finding difficulty in trusting that everything will be ok from here on out. I think we are both still a bit shell-shocked from this experience. His diagnosis was completely unexpected, as he has none of the typical risk factors for this type of cancer. The fact that we don't know (and probably won't know) exactly what caused it is unsettling. My best guess is a genetic mutation or possible dental trauma from some crooked teeth that have since been extracted. I try not to dwell on the questions that we will never have answers for, but they always seem to resurface from the corners of my mind. I'm wondering if anyone else has struggled with the adjustment back to "normal life" (whatever that means, or will mean) after treatment is over, and what has helped you make your way forward?

09/23/2016 39 year old husband dx w/SCC BOT, HPV negative, keratinizing, T4A N2B M0.
11/09/2016 Right hemiglossectomy w/neck dissection. 44 lymph nodes removed, 4 malignant. No extra capsular extension, no chemo.
11/15/2016 Received g-tube.
11/23/2016 Dx w/pulmonary embolisms both lungs.
12/27/2016 Started 30 rads (TomoTherapy). No Cetuximab due to PE's.
02/07/2017 Last day of rads.
02/25/2017 G-tube removed.
05/10/2017 1st follow up CT scan clear. Next scan 11/2017.
#194678 - 06/20/17 01:24 AM Re: Stuck in Transition Post Treatment [Re: wheeliegal79]  
Joined: Feb 2017
Posts: 66
sooner Offline
Supporting Member (50+ posts)
sooner  Offline
Supporting Member (50+ posts)

Joined: Feb 2017
Posts: 66
Yes, to be honest as a caregiver I am still in shock every day. I call it the new abnormal. I am in the midst of a grieving process for our life before HNC. For us the life we had is not coming back and I have to learn to love the life we have now. I am trying to put lipstick on that pig. What keeps me going on the days I can "go" is focusing on the things we can control and letting everything else go. As a control freak, I am not getting good at letting go, but I am working on it.

Wife to DP. DX SCC BOT 1/31/17
First treatment 2/27/2017 Cisplatin 3 times and IMRT
Last treatment 4/18/2017
Clear PET 7/13/2017
PEG removed 8/4/2017
#194774 - 06/29/17 07:26 PM Re: Stuck in Transition Post Treatment [Re: wheeliegal79]  
Joined: Sep 2016
Posts: 107
bjmpittsburgh Offline
Senior Member (100+ posts)
bjmpittsburgh  Offline
Senior Member (100+ posts)

Joined: Sep 2016
Posts: 107
Getting back to the things that your husband enjoyed before his diagnosis will help. That will take some time. Life threw you and your husband a curveball and knocked you both down. Time to get up and start again.

Physical recovery will occur much faster than the mental / emotional recovery. I've been a proponent of including some sort of psychological support during the process between diagnosis and recovery. Even if its just to check in and follow progress.

From experience, it takes time and effort from each of you to discover his / your new normal. The shock wears off over time. (I can assure you that.) I was in my early thirties when I was first diagnosed and it took me almost a full year from surgery until I was back feeling like myself again. Getting back to weight lifting helped me. Being a new parent also helped. The second time through, well......lets just say I'm becoming more comfortable with physical constraints and limited energy......quality of life is there, but I really have to push myself to get through some days. I think the difference between the two separate battles, (besides the obvious - age -), is the level of pain. Hopefully, your husband is pain free or moving in that direction.

Be patient and continue to be supportive of each other. Before you know it, six months / a year will pass and it will be just something you had to deal with as a couple.

Good Luck and maybe think about talking to a professional either one on one or as a couple.

1997 SCC Tumor on tongue - Partial Glossectomy
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Glossectomy
6 weeks chemo and radiation
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-glossectomy
Free Flap reconstruction from thigh
PEG Tube inserted
6 weeks radiation
Pump Feed
Permanent Issues with speech and swallowing

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