Lurk no more

Tonyps03

Hi - it is unfortunate to have to meet you all this way - I would it rather have been on the street or in a wonderful restaurant somewhere.  I have been lurking around reading many words of wisdom for a few weeks, trying different suggestions, reading great blogs (thank you Surfer).  My husband has just finished chemo/radiation for a stage IVa HPV+ cancer positive base of tongue tumor.  Thank goodness for the PA at his primary care office that she sent him for an ultrasound rather than home with a prescription for antibiotics.  His treatment has been at Smilow Cancer Hospital at Yale New Haven - just 10 minutes from home.  If you're going to catch cancer I highly recommend moving to New Haven CT first, the treatment has been over the top!  The tumor board has members from outside facilities such as Sloane Kettering and Dana-Farber.  The diagnosis was viewed and reviewed by many respected doctors in the field.  That it is (was) HPV positive is some of the best news ever!  He was a smoker(4 years quit) and is a routine drinker (a little more than social - if we're honest) So they went as aggressive on the treatment path as for the abject SSC type.  

He did 3 rounds of Chemo (Cisplatin) the last at 40% for the hearing side effects - and 34 rounds of radiation.  It was supposed to be 35 but he could not make that last round.  He owns that decision - I do not disagree.  He is and will always be my hero.  Childbirth and breast cancer were NOTHING in comparison to this.

If you read all of that and are still with me - you're a saint.  Thank you! It was cathartic just to write it all out!

He lost a lot of weight over the course - 145lb down to 120.  It has been murder to watch.  He's up now - three pounds in 6 weeks.  There is so much going on in these weeks following treatment - thick mucus, dry mouth, pain med withdrawals, continuing constipation.  It's almost like all the worst has been since the last radiation treatment.

I guess at this point I need this support for myself to keep things going.  I am not the "Ra Ra" cheerleader type, I don't tell him to "stay positive". He has the right to feel however it is he's feeling.  I'd rather he was scrappy but he's tired too, I have only asked him not to give up.  But I feel like I'm all out of positive. I was laid off a week ago, I'm exhausted from looking for little helpful things to put in front of him.  I would love to have a drink and a good meal (not necessarily in that order).  But every time I think of doing something I feel guilty and don't.  I know he wants those things too.

So here I am, speaking up - Hello.  Thank you for the support you have been (unknowingly) been providing.  i just didn't feel right lurking anymore.      

Hondo

Welcome to CSN H&N

Your husband is like a Timex, he took a licking and he keeps on ticking. Thank you very much for sharing his story, now it is to the healing process. Did they give him any radiation or just Chemo?

 

 

 

Tim

 

wmc

Welcome to H&N group

Welcome, and truly sorry you need to be here too. You are correct in what you go through in the treatment. Doctors say the Head & Neck is the second worst treatment one can go through. The good news is it is beatable, and you do get so much better. The recovery can seem slow, so always celebrate every small milestone. What seems small to most can be major to one who went through this. 

Thanks for sharing your story, and lurking. [LOL] I hope you read that this is very hard on the caregiver, and at times maybe harder. The loved one feels all the pain, even when there might not be any. I know that was the case with my wife. Right after surgery [removed my larynx] I was in zero pain. Which was very strange as I have bone spurs and some other conditions that had me on some pain meds for years before. The nurse would come in and ask, what level of pain and I would say none or maybe a one. 

What I have learned is you need to have true communication and let both know how you feel and what is going on. You need to be able to have a place where you can just vent and say how you feel. This is why this group is the best you can find. We do know how you feel and have gone through. You can't really talk about it to friends and most family as they don't understand and will drift away.  Please know you both are not alone in this as we always will have an ear to listen, and hopefully answers to questions. You both are in my thoughts and prayers.

Bill 

jcortney

Been Exactly There

IVa, HPV+, BOT, Induction Chemo +++++

Best advice I can give is this, your husband is just getting done cooking so things will SLOWLY get better.  My analogy is like taking a big steak off the grill, it still cooks for a time, same with his throat.  Hydration is more important than you can imagine, it has put many more folks in the hospital than almost any other side effect.  As for constipation, multiple products, multiple doses.  Better to get a bit loose than too tight.

Now to being a caregiver; and that's what you are.  What you are not is a saint.  You need to put your feet up and have a glass a wine and find some relax time for you.  Believe me, your husband would rather have  you relaxed and yourself than so stressed out you are not able to be part of the solution.

Again, I've been through it all, feel free to ask any questions you might have, here on PM me.

Good Luck,

Joe

CivilMatt

welcome

 

Tonyps03,

Welcome to the H&N forum, glad you took your leave from lurking and joined the fray.

I too am a stage IVa, scc, bot, 1 lymph node (surgery, rads & Erbitux).  I took a little different path than your husband, but still the desire for success.

Joe is spot on with his steak analogy, hydration being important and keeping it loose.

I will keep my eye out for you on the street or in a wonderful restaurant; I am the one with lots to drink who chews a lot and whose wife finishes eating before him.

Now about being a saint, is that official? 

Things do improve greatly after treatments have kicked the c _ _ _ out of us.  Your husband should see improvements too

Matt

 

the_wife

Nice to meet you!

Welcome!!! You and I have a lot in common. I was caregiver to my hubby with a similar treatment. I agree. Breast cancer was nothing compared to this. And like you, I was a lurker and didn't join in until after the hubs was done with treatment. I was just too busy and too tired to post. I hope you know that you deserve an award for going through this. As caregivers we don't do the treatment, but we're right there alongside with them in the trenches. Whatever you do, don't ever feel guilty for putting your feet up. You need to stay healthy and stay sane, but I'm sure you must already know this. You know a thing or two having gone through breast cancer. From one survivor / caregiver to another, I'm giving you permission to have that drink and enjoy that good meal. Better yet, go out and celebrate with a good friend - just having made it this far. You don't have to be positive, just be kind to yourself. The regime is insane and the aftereffects are downright tortuous, at least they were for my dear hubby. Someday you'll look back in disbelief and wonder how you did it. This site is awesome. I don't know what I would have done without the people here. Come back and post as often as you need to and write whatever you're feeling at the time. This is a safe place. 

I wish you well.

Tonyps03

Thank you all

I'm glad to have come out of the woodwork.  I know the importance of getting support as a caregiver - it is right there in black and white in the other posts you all have made.  

yensid683

been there and done that as well

4 years since diagnosis, stage IVa, base of tongue, HPV+, induction chemo, 33 rads with weekly Erbitux and then two neck dissections so I can relate.  It will get better but as others have pointed out, agonizingly slow.....

Caregivers have it much harder than we do and it may sound odd but you do the worrying, you do the work (hard - hell - VERY hard) of helping us and worrying about how we're feeling that you (at least my wife didn't) take any time for yourself.  You need to take the advice shown here, put your feet up, sip some wine, enjoy a good book or whatever you need to decompress from the grind that is caring for a cancer patient.

See if Smilow has a support service, I went to St. Peter's Cancer Center in Albany NY and they had all kinds of patient and caregiver support available.

Glad to hear that hubby has finished treatments, he will slowly feel better and will re-gain the ability to eat, taste and get back some saliva.  I'm 4 years out and the only real issue now is the reduced saliva.  I have about 80% of normal, I can eat most anything but drier foods need a sip of water at times. 

:-)

swopoe

Welcome and glad you found us

Welcome and glad you found us. I am a caregiver to my husband. He was diagnosed with stage 1 oral tongue cancer in October 2015. He had surgery, 6 weeks of rads and chemo (cisplatin). HPV negative, never a smoker, 41 yrs old. He is doing much better now after treatment ended in January. I feel your pain as a caregiver. I still worry a lot, and I just try to go day by day. It is very hard. This board has been a wealth of support for me, and it will be for you too, I am sure. Keep hanging in there.

Tonyps03

swopoe said:

Welcome and glad you found us

Welcome and glad you found us. I am a caregiver to my husband. He was diagnosed with stage 1 oral tongue cancer in October 2015. He had surgery, 6 weeks of rads and chemo (cisplatin). HPV negative, never a smoker, 41 yrs old. He is doing much better now after treatment ended in January. I feel your pain as a caregiver. I still worry a lot, and I just try to go day by day. It is very hard. This board has been a wealth of support for me, and it will be for you too, I am sure. Keep hanging in there.

Unable to post comment

I am not sure why - but I have sent the information on the block screen to the system administrator.  I wanted to thank everyone for the warm welcome and tell you how much I appreciate you.  

Hopefully this will be resolved soon.

Anne

Tonita

I had my surgery at Smilow

I had my surgery at Smilow and Dr. Judson was my surgeon.  They are really great there.