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#193433 11-29-2016 04:59 PM
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MrsW Offline OP
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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!
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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
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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
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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
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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
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[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
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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: 7
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[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
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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
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MrsW Offline OP
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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!
Joined: Oct 2008
Posts: 246
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I, too, am an RN. It carries a unique burden in these situations. You can picture all the horrible problems in one instance, like viewing a movie.

Here is what helped me - know that the time prior to a treatment plan being instituted is often the most anxiety producing. The PA in my PCP's office said this to me and I did not believe him, but he was right. He prescribed anti-anxiety meds for me and I only needed it for a short period of time. It allowed me to stop the "movie" from running constantly and get some rest. Once tx starts you are very busy.

Next, I gave myself a week to panic and read all the bad side effects and outcomes on this site and elsewhere. I prepared for the worst, while hoping for the best. To help my husband, which I knew I could do very well with my training, I had to calm down.

I spent a great deal of time thinking I could anticipate problems. I learned it was best to rely on rad/oncology team for guidance because the situation often changed and I had to address side effects in order of importance instead of ahead of time.

As Tammy did, I handled most of the medical information and advocacy. This was a relief to my husband, freeing him to concentrate on coping with side effects. We also divided this up in a team approach, which I believe was helpful.

Remember that as nurses we are familiar with worst case scenarios. We don't often deal with patients who have had good outcomes and are enjoying life after cancer. My husband has frankly told me that he is glad he fought the battle. Life has been worth the struggle we went through.

Stay in touch with us and ask questions. This a safe place to vent and express positive and negative feelings.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
Joined: Jul 2012
Posts: 3,267
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Welcome MrsW!

I had a similar diagnosis as your husband, left tonsil, two involved lymph nodes, mine was stage 4a. The good part is it's HPV related, which usually responds better to treatment, and is the biggest positive prognostic factor we have. In fact, many stage lV related HPV Oropharyngeal cancers like tonsil. base of tongue, will soon be stage l or ll with the new staging system for this type of HPV disease.

There are dintensification treatments in clinical trials, and looking foward to seeing what treatment changes there will be with the new staging system, some which may already be in practice. I'll only ask if your husband has a history of smoking?

The only thing I can add, at this time, is your CCC usually have social workers that can help, and even direct to counselors to help deal with the cancer diagnosis. There are also many programs, literature, to assist caretakers, such as yourself. If you need any resources, I have some.

If you have any questions, please ask here, besides the medical team.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






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MrsW Offline OP
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thank you Paul
your encouraging words, support and helpful thoughts are so appreciated.
we had a CSW stop in at our last visit with the surgeon..
she actually had the worst patient approach and not only came across odd to me and my husband but truly did not impress me.
I work with CSWs all the time and they are nothing like this. We will seek resources for certain, but will likely look to find this with someone a bit more cancer patient etiquette. You did remind me to put this on my list of things to ask and do.

thank 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
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Travleottie

ohhhhhhhhhhhhh..gosh.... thank you thank you thank you..
thank you ..
it really does help to have the unique perspective understood.
it really is a "movie" and of late it has been only worst case scenario and worst case outcome and worst case anticipations.

maybe that is natural for everyone to go through..
but reading things in forum and in medical journal research ( I worked in research for well over 13 years) just flips a switch for me of no return. I feel I need to educated and prepared to understand and know ...but it seriously takes a toll on my heart and mind.

Maybe some anti anxiety would help for the short term. feeling I could need it

so much stress and worry along with continuing to work full time...ugh.

really really really appreciate your kindness and sharing.
take care


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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