Hi my name is Kathy. We recently found out that my husband has throat cancer. While I am no stranger to cancer (lost several loved ones) dealing with throat cancer is new to me and scary is not even close to what I feel.

This nightmare started back in Sept Tommy (husband) was treated for Strep Throat at our local ER even with a negative Strep Test. Was given antibiotics along with something called Magic Mouthwash. While this antibiotic did nothing the mouthwash seemed to help. Throat stayed somewhat sore and he returned to his doctor in Oct. who treated him once again for Strep. No test done. Did not look at his throat.

With the holidays approaching and the loss of my sister he put off seeing his doctor again because he did not have health insurance until March. He is on disability due to Mitral Valve Stenosis and COPD.

He was admitted to the local hospital in January for heart rhythm problems and when he asked to hospitalist about his throat the doctor brushed it off and told him to see his PCP. Due to severe weather we had to reschedule his appointment 2 times. Finally saw the doctor and he referred him to and ENT. Before that appointment he ended back in the hospital with heart problems. Doing scans on his corroded artery they saw something and did more test.

The ENT was called in and told my husband just by looking with a scope that he had cancer. Not something they should have done to someone with PTSD, and heart problems. Tommy ended up in ICU and coding on them within 2 hours of the news. We had all these doctors fighting back and forth about what needed to be done first, heart surgery or biopsy, for 3 days that is all we heard. ENT finally won and biopsy showed cancer.

We are now having a port placed this week and a feeding tube placed this week. The PET scan came back over the weekend and the doctor told us that a Tumor on right side involves 2 or more lymph nodes, 2 on the left side as well as a spot in his lung.

It's like the hits keep coming. I am a mess, I keep it together for my families sake but I am a total mess. I myself has many health issues and mobility problems and I am terrified he may need something I can not do. I am afraid I can't help him fast enough or be physically able to do for him like I need too. I am scared and feel like I am letting him down.

Thanks for letting me vent. I don't know what to do or where else to go for support.

Hi Bailey - first off take a deep breath, two in fact. You just came to the best place on the planet for what you need. Either we have the cancer like your husband, or are caregiver to someone who does. So, welcome to the family girl. The cavalry has arrived.

This family has kept all of us sane through our journey, me especially. It's one of the reasons we stick around after treatment is done, to help the others who come after us. It will do the same for you. There's just something about talking to people who KNOW what you are dealing with that makes it easier to get through.

Right now, you have a steep learning curve to negotiate, lots to learn in a short period of time. So, besides spending time here on the forum getting to know others, spend time on the OCF website pages where all the technical information about diagnosis and treatment lives. By comparison, try to avoid the internet in general about oral cancer as a lot of that info is flat out wrong and will do more harm than good. Now, if that info comes from the American Cancer Society or the Center for Disease Control then it's probably accurate.

Get yourself a spiral notebook to write down all the questions you will think of. I had separate lists for each doctor (ENT, radiation oncologist, surgeon, etc) as well as a list for the nurses and for the questions you will think of from reading the forum and website.

Last thing I will say today is to consider getting your husband to join the forum also. It will go much smoother and better if he can get to know others directly instead of having to get everything through you.

Right now, you are at the worst point in the journey. You know so little about the disease, and that is the cause of your fear. Each day that passes, you will know more, and the fear level will decrease until soon you will be able to sleep again. We've all been in your shoes, so we know what you are going through.

Again, welcome to the family.

Tony

Kathy,

Sorry to hear about your husband's diagnosis and that you both have many health issues. What lies ahead will not be easy and your concerns about your health and mobility may be a sign you need to rally your resources around you. From what I am hearing, you are already overwhelmed and the journey is going to get a lot rougher for a while.

Do you have a network of family and friends that you can start asking for help? This is the time to learn a lot of things as Tony suggests but without help, you may never find the time, given all the things going on now.

Do you have adequate insurance for things like home health care? Now is the time to assess your needs, both immediate and short term, as the treatment will be very difficult. From the picture you have painted, I don't believe you will be able to do this alone.

Hi Kathy,
You are indeed in the worst phase of this. There is total confusion and frustration. The notebook idea is really a must. You will think of questions and things you need at all hours of the day and night and you need to write them down right away so you remember.
Also, round up your support group now. The bottom line is you know you will not get through this alone. None of us get through it alone, well, I guess there are a few that did and they are remarkable for it, but the majority of us needed help. I was the caregiver and wanted to be with Kevin as much as I could. So I had to have help to keep the house going. Anyone that says what can I do to help; give them a task! Seriously. This is not the time to think you might inconvenience someone. If you have folks who love you; give them a task. Let them know exactly what you will need. You know you will need help, so get it set up now!
We will be here for questions and online support. We have been where you are, but it sounds like you have extenuating circumstances which are going to make it more difficult. Please don't hesitate to ask for advice or opinions. Even if you just need to cry, vent, scream or whatever, we are here.
Welcome to the family...one we wish we didn't have to belong to, but we do so we do it together.
Blessings,
Kathy

Welcome to OCF! You have found the right place to get info and support. We will help get you both thru the upcoming treatments and recovery. Its not easy but it is doable.

As a caregiver, you have an incredibly difficult job. Taking care of all the household issues plus being an advocate, caregiver and wife to your husband. Thats alot for anyone to manage. Please be good to yourself and take some time for just you once in a while.

I suggest doing lots of reading both here and on the main OCF pages. Educate yourself so you will be ready when you need to advocate for your husband.

Hang in there!

Welcome, Kathy. We're all very sorry that we had to meet under these circumstances, but we are glad to have you and will offer all the help we can.

You may or may not be able to handle Tommy's care by your self, but if you don't have the funds to hire home health care (either from savings, or through insurance) please check with the county government. Most states have programs to provide financial or other forms of assistance for situations just like yours.

I can't tell you who to start with because every state and every county has it's own way of organizing and doing things. As a last resort, ask for the County Administrator and talk with either him/her or his/her AA (Administrative Assistant.)

The key to getting past the fear that grips you now is to get busy with something that helps your situation; and what I just described above is a good way to get started!

Best of luck to you both,

Bart

Kathy, welcome. I'm so sorry about your husband's diagnosis, and the recent loss of your sister. No wonder you're reeling! I'm glad you found OCF. Your resourcefulness will be a great help to your family in the months ahead. You may worry about helping physically, but -- please trust me on this -- the more important task will be to listen, research and especially love and comfort your husband as only you can.

Have the docs set a treatment plan yet? Where is your husband's tumor?

If your local hospital is a major teaching hospital, that's ideal. Large academic hospitals have better patient outcomes, and your husband's other heart problems make his cancer treatment more complex than most. Of course, not everyone has a choice. If you do, Duke is rated among the country's top 20 cancer centers and has a huge team of head and neck cancer MDs. Wake Forest and the University of NC are also top choices.

Your hospital's social workers can help line up resources. Also, the American Cancer Society has support programs, including volunteers who drive patients to appointments.

Take a deep breath, you are going to get through this --

Lynn