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Joined: Nov 2006
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Cheryl, as Paul says, fighting may well be the thing that is helping him to keep some measure of control over the whole rough ride you are both on. Many survivors go through various stages of denial, fighting, acceptance, etc. and not in the same way or in the same order. The loss of a previous lifestyle is a definite loss and brings with it all manner of reactions for both of you. I think it must be hard for a man in particular to have to accept help or suggestions from someone else. When my son was going through Tx, he reached a point where nothing I tried to suggest had any effect. He had the attitude that I couldn't know what he was going through and if he couldn't figure things out, nobody could. ( He is super intelligent but I still have to remind him sometimes that somebody else may also have a good idea that he hasn't thought of yet.) What I did, was print out some of the suggestions from other posters here of things I thought he could benefit from and just leave them somewhere while he was sleeping (sort of accidentally) so that when he woke up and I was gone, he might be curious enough to look at them and decide for himself whether they were good ideas or not for him. This way it was not his mother telling him what to do. And it really worked! I could tell by his reaction afterwards that he had read the stuff. Cheryl, you know your husband best and and can probably decide where this might work. It's worth a try. If you do it while you are out taking a walk, or playing bingo, then he has time to think about it.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Jan 2009
Posts: 476
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Hi Cheryl and welcome to a new family who WILL support you. You can see from my signature that "we" are coming up on the 5 year anniversary from when John was diagnosed and started this battle. I say "we" because I really feel like it is/was "our" battle and not just his. I stay active on the message boards here as a way to give back to all the other caregivers going through this battle. I don't know what I would do without this wonderful, caring community. John also owns his own business and was never sick a day in his life before his cancer diagnosis. I was very thankful and lucky that this ordeal brought us closer and brought out a love in John for me that I never knew existed.

In my years on these boards there have been many caregivers who have been in similar situations such as yours. No matter what YOU need to take care of you. Being a caregiver can be a very tough and lonely job. We also had family members who just chose to check out and I choose to no longer have anything to do with them.

Like others have said you can't change your husband but you can change your reaction to him.

Just wanted to give you a BIG cyber hug and let you know we are here for you no matter what. Hugs, Wanda


Wanda (47) caregiver to husband John (56) age at diag.(2009)
1-13-09 diagnosed Stage IV BOT SCC (HPV+)
2-12-09 PEG placed, 7-6-09 removed
Cisplatin 7 weeks, 7 weeks (35) IMRT
4-15-09 - treatment completed
8-09,12-09-CT Scans clear, 4-10,6-11-PET Scans clear
4-2013 - HBO (30 dives) tooth extraction
10-2019 - tooth extraction, HBO (10 dives)
11-2019 - Left lateral tongue SCC - Stage 2
Joined: Sep 2012
Posts: 381
"OCF Canuck"
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Cheryl,

Just as a note, I also am self employed, and as stupid as it sounds, I didn't cry until I was told that I could expect to be off work for 3-6 months during rads.

I've been thinking a lot about what you have written. My job is to problem solve, so I have been mulling over this, and here's what I have come up with

(a) A big part of who we are is often defined by our work. While he can't return to work is there something connected to that he can do? Maybe consult for another company? His brain is still there, even if physically he can't. Are there some old work contacts who could start by simply emailing him some questions?

(b) Or perhaps there is a skill that is transferrable to charitable organization. I have a friend who is a carpenter, but was in a bad car accident, ending up in a wheelchair. He now carves wooden figures, which are donated to charity.

(c) Is there a task around the house that isn't too taxing that you could ask him to do? He strikes me as a "man's man", so anything outside of the traditional realm of "women's work" (cooking cleaning, etc.) might work. Fix a clock, build a shoe rack, etc.. As a feminist myself, I had to readjust my thinking for my dad when he was sick, because asking him to help fold laundry was akin to suggesting he was weak (men, bah - birth some babies, and then tell me who the weaker sex is - no offence meant gentlemen).

That's all I have so far, and maybe none of it is helpful, but it might trigger something for you. I'll keep mulling.


Tina
Diag: Aug. 13/12
T3N0M0
50% + glossectomy and bilateral radical neck dissection, removal of nodes zones I - V
Surgery October 11/12
Chemo/rad on hold due to clear margins and nodes
Sept 21/13 clear CT with anomaly thought to be the artery, being watched closely.
Dec 16/13 - anomaly confirmed artery, all clear
nickname: "get 'r done"
Plans: kick cancer's butt
Joined: Nov 2013
Posts: 17
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Posts: 17
Hi all,
I'm really at a loss of where to post. Should I start a new topic or be under caregiver?
I really feel lost, so I'm just going to write here and see what happens.

I need help with this sadness, I need help with acceptance.

Last Tuesday I noticed Doug's leg swelling. I showed him, but he wasn't concerned. By Wed I was sure the swelling wasn't right, but true to Doug's self, he asked me to wait until Chemo Thurs to see a Dr.

On Thurs Dr took one look and sent him to Doppler. He has three very large blood clots. He was admitted to the hospital where he received platelets and blood thinners to get rid of the clots yet make him strong enough for surgery.
It was quite the balancing act.

One the 16th they took him to surgery and put in a Greenfield Filter to catch any dislodged clots.

During our hospital stay they did his 3 month PET Scan, and it was not good.

The cancer has returned to the 2% of tongue he has left, it has invaded more lymph nodes and has metastasized into his right lung.

I am devastated, we are devastated. We understood that someday the chemo would stop working, but somewhere I believe, we both held onto hope.

There is a crushing weight on my chest that I cannot shake.I am frightened beyond belief and just don't know what to do.

As you would guess, Doug is keeping himself as busy as possible and as always Cheryl is wanting him to stop.
Yesterday when we got home he was up and down the steps 10 times. His syncope would hit, he'd stop for a moment, then continue on.
When I asked him to stop he said he was not going to lay there and die.

Today his leg is swollen again, go figure. He refuses to call the Dr, but he is taking it a bit easier.

I want to choke the life out of him, yet I'm so very scared of losing him.

I'm a plain old basket case and have no idea what to do.



Cheryl
1st post under(Introduce Yourself Re:I've waited too long)
Caregiver to Doug
Dx 8/31/10
Stage 4 HPV(?) SCC Tonsil, Tongue, Jaw and Lymph-nodes
98% Glossectomy
Bilateral Neck Dissection x 2
Trach and PEG indefinitely
Palliative weekly Chemo
Carboplatin-Pemetrexed-Erbitux
Joined: Dec 2003
Posts: 2,606
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Cheryl, I'm really sorry to hear your news. Is Doug under hospice care now? I know you mentioned the chemo as purely palliative so Doug would qualify. They have a lot of resources that could help you both deal with so much in front of you right now.


SCC Stage IV
BOT primary
T2N2bM0
Cisplatin/5FU x 3
40 days radiation at 4 sites
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
PLS 02/13
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/
Osteoporosis 01/2018
Heart attack 06_2018

Living life LARGE with no quit in this guy!
Joined: Aug 2011
Posts: 269
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Posts: 269
I'm so incredibly sad to read your recent post and to read about how scared you feel. Of course you are sad and scared. I so wish i had an easy fix, or the right words. I have neither. Praying for your peace, for Doug. It's all I can offer. Hoping someone there will come along side of you for support.
xo


Nancy (53 at dx)
Metastatic SCC. Stage III. HPV positive with occult primary. N1, no ecs
7/1/11 - L-Selective neck dissection. Tonsillectomy. All clean. No rad, no chemo.
5/29/13 - Found primary
7/3/13 - TORS
7/8/13 - Emergency Surgery/Blood vessel burst in throat
8/9/13 - Peg in
9/3/13 - Radiation starts 30 IMRT, 60gy BOT, 56gy both sides of neck
10/14/13 - Radiation ended!
11/12/13 - PEG out!
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Cheryl - Please get some help for YOU! Lots of caregivers get depressed and anxious to the point where there seems to be no way out. Call your doctor or Doug's doctor (or have someone call for you) and tell them what your are feeling and what's been happening to you both. There are meds that can help you cope. During my son's treatment, I reached a point where I thought I would just explode with everything I was worried about. I happened to be in my car driving and just made it over to a parking lot where I had to take several deep breaths before I managed to call my doctor and then drive home. The meds won't change the situation, but they can make it easier to cope. You need to take care of You, Cheryl so that you can continue to be the awesome caregiver you are for Doug.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



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so so sorry.


David

Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
Joined: Dec 2010
Posts: 5,260
"OCF Canuck"
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Cheryl I pm'd you. Hugs girl.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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Cheryl, Im so terrible sorry about everything you and your husband are going thru. We are here for you both. Please dont be shy, its okay to lean on us.

(((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
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