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#193433 11-29-2016 04:59 PM
Joined: Nov 2016
Posts: 59
MrsW Offline OP
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Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
hello all...
I posted last night in the midst of tears...
today, will try to be introductory.
my husband is 55, newly diagnosed with tonsillar HPV . two lymph nodes. So far, tumor board meets on Thursday. Surgery via robotics was deemed not an option . They are going to determine if surgery.neck dissection is. My husband is leaning on not wanting surgery, I can't say I blame him but I know we don't have all the info yet. I don't even know the staging .. heard the MD mention in it but it is a blur. I am a RN so I do attend to information but that seemed to skim over me.

the reality of all this sunk in big time for us both yesterday after the ENT onco surgeon apt.... sunk in hard and deep. Fear, unknown, worry, worry, loss, sadness.... and so much else just overwhelmed me. My dear husband.. just says... he wishes it was over, and how he just doesn't want to be sick.
I have read some posts here and so much is inspiring and testament to human will and kindness.. and yet so much just leaves me more frightened, and worried. Sigh.

Alas... bless you all, thank you for sharing and caring. this is such a scary path... there is much here that hopefully will help him and I.

Mrs W


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
Joined: Nov 2016
Posts: 18
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Hi there and welcome.

I'm fairly new here myself, I can really relate to the fear you are experiencing. My husband started treatment on November 7th.

Some of the best advice I received early on was to not waste any time. My husband gained 19 pounds before he started treatment. I was able to get an appointment with our attorney to get things we'd talked about getting in order for years - in order. I ordered some things from Amazon before I needed them (cool mist humidifier, disposable puke bags, Jeans Cream (to deal with radiation skin issues) and I got some baskets together to store meds in so as not have our living area look 9 kinds of medical.

I'm sorry you are joining this club. It sucks on so many levels.

The people here will have some very valuable things to share.

Warm regards,


Caregiver to my husband, Mike
He is:
56 years old
Non smoker/social drinker
Hpv -
SCC BOT N2C Stage 4
Dx 10/14/16
Rx of 35 days Rad & 3 rounds of cisplatin
Treatment started 11/7/16
PEG installed 11/2/16
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Welcome to OCF, Mrs W! Being from a medical background you understand things in a different way than most of us do. I know many of the stories you read here are sad and upsetting. What you dont often see is all those members who went thru their battle, recovered and returned to their life almost the same as they were before. Those are the members who check in less frequently than many of our regular posting members. Those members are busy out living their lives smile There is so much happiness mixed in with the sorrow of losing so many dear friends.

Im so very sorry your husband is newly diagnosed but you have come to the very best place for info and support to help you both get thru everything you are facing. It often is not easy but with our pointers you both will get thru it much easier. Those initial appointments are not easy. We all have been where you are and experienced our ears stopped working when the doctors were talking. Its just like the 5 stages of grief how we process being diagnosed with cancer.

One of the first things I can tell you is to start having your husband eat all his favorite foods now. He does not want to go into this with cravings. Its ok if he gains a couple pounds so dont worry about the calories, just enjoy eating everything smile Second take another person or ask the doc if its ok to record your office visit. We all have experienced our ears not hearing past a certain point in the appointment.

Wishing you both all the best with your appointment tomorrow!!!


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
Joined: Sep 2016
Posts: 111
Senior Member (100+ posts)
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Posts: 111
Mrs W -

Glad you found the site and sorry for the reasons.

As an RN, you know that the patients attitude and support system can have a great and positive impact on the recovery process. Your strength and knowledge will be very beneficial to your husband.

If I may offer a few suggestions -
First - Start a notebook and have questions ready for the medical staff. Take notes about what was said and try to get the details documented. Read the notes after and make sure they make sense to you and your husband.

Second - Your husband needs to come to terms with what he is facing and what steps he will have to take to become cancer free. When he, (and you), come out the other side of this you will both be stronger in ways you cannot imagine.

Third - Follow the directions of your medical staff. If something is not working for your husband, let them know. Be active in the surgery / treatments / and recovery process

Finally - Prepare. Get his affairs in order. Create a safe comfortable space for him at your home. Be prepared for all potential long term issues, speech / feeding / personal hygiene / mobility concerns. Keep him involved in family decisions and discussions as much as possible.

There is no easy way to do this. For you or your husband. There is a time to fear the unknown and then there is time for action.

Rely or your faith. Depend on your medical team. Focus on becoming cancer free. Provide strength for your husband. These are things you can do.......


1997 SCC Tumor on tongue - Partial Gloss
1997 Met to Lymph
Radical Neck Dissection / 2nd Partial Gloss
6 weeks chemo and radiation
Brachytherapy
2011 Stroke
2014 Recurrence SCC at Base of Tongue / Hemi-gloss
Free Flap reconstr from thigh
PEG Tube
Radiation
Permanent Issues with speech and swallowing
2018 - Bleeding throat / mouth
2019 - Bleeding throat / mouth
2019 - 3rd diag Cancer SCC Base of mouth / jawbone
2019 - Aug remove portion of jaw / right pec det / free flap closure and tongue

Joined: Nov 2016
Posts: 59
MrsW Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
hi Julie916--
thank you for connecting. I too am so sorry you are here... and for your husband. thank you for helping me think about not wasting precious time... there is none to waste.. yet.. ironically finding it is not easy either .. working full time and he still trying to manage a bit of his business work. Is there a list of things somewhere? or did you just skim posts and formulate the needs yourself? I am on Amazon and see the OCF donation aspect with it so will do that. deep breath... it is ..for me, so anxiety provoking right now. hugs you


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
Joined: Nov 2016
Posts: 59
MrsW Offline OP
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
[quote=ChristineB]Welcome to OCF, Mrs W! Being from a medical background you understand things in a different way than most of us do. I know many of the stories you read here are sad and upsetting. What you dont often see is all those members who went thru their battle, recovered and returned to their life almost the same as they were before. Those are the members who check in less frequently than many of our regular posting members. Those members are busy out living their lives smile There is so much happiness mixed in with the sorrow of losing so many dear friends.

Im so very sorry your husband is newly diagnosed but you have come to the very best place for info and support to help you both get thru everything you are facing. It often is not easy but with our pointers you both will get thru it much easier. Those initial appointments are not easy. We all have been where you are and experienced our ears stopped working when the doctors were talking. Its just like the 5 stages of grief how we process being diagnosed with cancer.

One of the first things I can tell you is to start having your husband eat all his favorite foods now. He does not want to go into this with cravings. Its ok if he gains a couple pounds so dont worry about the calories, just enjoy eating everything smile Second take another person or ask the doc if its ok to record your office visit. We all have experienced our ears not hearing past a certain point in the appointment.

Wishing you both all the best with your appointment tomorrow!!! [/quote] Christine.. what a nice this message is. people in the medical profession often have an unspoken dilemma of knowing things that at times where the bliss of not knowing is a greater benefit. Thank you for giving me a bit of hope... that there are other people doing okay and living life. ON the flip side, goodness... I am so grateful for your caring dedication to others. <3


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
Joined: Nov 2016
Posts: 59
MrsW Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
bjmpittsburgh... truly.. truly bless you!
thank you for your thoughtful and helpful points..

the second is the most important... I think he is in a bit of denial about the process yet to come.. not the diagnosis. but he doesn't really truly understand what is coming his way. I don't want to scare him either..
but I just don't know how to help him prepare other than getting things set up and in order.. and try talking a little at a time. he is having sleeplessness/anxiety .. as am I... it is so hard to function at work and feel as though we don't have a tornado sitting on us grinding our minds, hearts and stomachs. facing this and the struggle to come is soooooooo upsetting. I am myself having such difficulty looking at what I understand will be hell on earth for this man I so love. ----


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
[quote=MrsW]hi Julie916--
I am on Amazon and see the OCF donation aspect with it so will do that. deep breath... it is ..for me, so anxiety provoking right now. hugs you[/quote]

@MrsW...Im not sure what you mean by this?

When ordering anything at anytime thru Amazon, please use first click on the Amazon box. Its on the right near the top of any page. Or you can also save it to your browser.

Amazon also has another kickback program, Amazon Smiles. This is not as helpful as clicking on the Amazon box before you shop. Amazon smiles gives a very minimal kickback of .5% while going thru the Amazon box is something around 4 or 5% of purchases. It doesnt cost the buyer a thing. It only takes an extra second to help OCF.

Any further questions about this please send me a private message. Thank you!


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
Joined: Mar 2011
Posts: 1,024
"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)
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"OCF Kiwi Down Under"
Patient Advocate (1000+ posts)

Joined: Mar 2011
Posts: 1,024
Hello MrsW. This is indeed a scary journey. I too am an RN. My Husband Kris, didn't want to know anything much about his cancer or treatment. He only wanted to get the treatment done and he would cope with any side effects. I tried my best to prepare him by giving out small pieces of information that I knew he could deal with. Kris was for the most part, content to let me take over. He knew that I could and would, deal with all the medical information and that I would advocate strongly for him. That was enough for him. I told him that what happened to him, happened to me. If you know what I mean. We most definitely were in this together.
I am so sorry that you have need of this site, however , this is the best place to come to for accurate information and solid, helpful, support.
Please know that this is a very treatable cancer with good overall survivor rates.
Kris was diagnosed 6 years ago this week. Yes, we had a further blip in the road, nearly 5 years ago, but, Kris is alive and well and life so good. Yours will be too.
Take this one day at a time. You will both get through this.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Joined: Nov 2016
Posts: 59
MrsW Offline OP
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Nov 2016
Posts: 59
Tammy-
thank you for sharing your and your husband journey with this. It really helps to read from your perspective as a RN. It feels similar to what I see is happening around me. I suppose that is just the trust he has but also the trust in my understanding of the medical aspect... something the PA I work with noted is that it is an unspoken dilemma for people in medicine to actually be on the other side, either themselves or for their family. Unfortunately we don't often get the benefit of not knowing things .. at times, in the most respectful way to use the word, he said .."ignorance does have it's value at times."

I appreciate the hopefulness of your reply and the encouragement. What joy for you and your husband to be survivors and the gift you give back here to those in the same situation. I really am grateful for your touching base with me. thank you whole heartedly.


MrsW
Wife, RN and CG to husband 55 yo diagnosed with tonsillar /lymph nodes SCC HPV+ 11/9/16- PEG and Power Port 12/9/16. Treatment started 12/27 Cisplatin x7 and RAD x35 on 12/28/16. Trismus had gotten worse!
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