New to the group

DanaRez

Hello,

My husband was diagnosed with Stage IV oral cancer. He had surgery in August and came home from hospital last week. I am his fulltime caregiver and I am struggling - tube feeds, medications, mental wellness are all a challenge. He is to start radiation and chemo next week to get what the surgery could not. I am afraid it's going to be too late. He has been suffering from terrible headaches the last couple of days, he has no energy and only seems at peace when he is sleeping. He will not do the physical or speech therapy with me - he only does it when the therapists are here (2 days per week). I don't know how he will survive the chemo and radiation based on his condition. I am frustrated, anxious and afraid and am just looking for some emotional support and outlet for all this emotion...

wbcgaruss

Dana my heart goes out to you and your husband. Dealing with head and neck cancer and recovery can be very difficult but certainly can be done. Could you provide a little more information? In what area did he have cancer? How extensive was the operation? How long was he in the hospital? His approximate age if you don't mind revealing? And when the cancer was found and diagnosed what was the doctor's idea of the success rate that they could eradicate this cancer? When I had my first cancer (throat cancer) probably stage 4 they were very positive that this could be beaten and eradicated. This gave me a very positive position to work from and they were very supportive and I had a nurse navigator to get me through any difficulties or problems and answer any questions I had. Do you have a nurse navigator or someone you can contact at his doctor's office to let them know of your situation? Follow-up radiation and chemo is used many times as a follow-up after surgery to get remaining cancer cells that remain even after a surgeon's best efforts. Also, cancer on a cellular level cannot be seen by the surgeon. It sounds like your husband has given up already and is not helpful in doing what needs to be done. If he has terrible headaches and has no energy or may be weak you have to let your care team know of these problems. If he will not try at least a little to do physical and speech therapy on his own or with you helping him and only does it when the therapists are there that needs to be addressed also. The therapists help you and train you and monitor you as far as your progress but you have to do the required therapy the other days of the week to aid in quicker recovery, 2 days is not enough. I am sure he is worn out from being in the hospital and it takes a lot out of you because in there you are mostly sitting around and you will lose strength and muscle and that's why it is important to do the therapy as best you can when you get home. Even just a little several times a day is a start. I spent an extended time in the hospital in 2019 and then 10 days in a rehab hospital which the rehab hospital helped me immensely as I also was weak and worn out from being in the hospital. I found this statement on the internet after I was home and still felt worn out---

Don’t expect to leave the hospital in the same condition you were in when you arrived. The rule of thumb for a hospital stay is that it will take you one week to recover to pre-hospital condition for each day you spend in the hospital (some say 3–4 days recovery for each day in the hospital). In my case, I spent a total of 21 days in the hospital so it should take 21 weeks to recover. Your muscles lose strength, you lose agility, and you lose overall body tone while lying in a hospital bed. This is normal even if you can get up and move around (and most of us can’t, which is why we are in the hospital). You will need help when you leave if you stay for more than a few days. That could mean you will need a walker and other assistive devices when you go back home. You may also need physical therapy. The sooner you recognize these facts, the better off you will be.

We are here for you as I can tell you are having a tough time giving him the care he needs and it will be an emotional toll on you after a while. He needs to start being active in his treatment and recovery even if it is just a tiny bit each day, he has to start somewhere. Does he have the ability and just not doing it or is he in fact so weak he simply cannot?

My opinion is you need to get ahold of his care team whomever you may have been told to call and give them a full rundown of what is going on and how it is wearing on you. After all, you also are an important health factor here because if you are not healthy you are the other half of this team. They need a complete rundown on what is going on and let them know you need some solutions and help. This may involve a visiting nurse coming to your house for a while to care for him and monitor his condition and your condition and situation also. You are not alone on this, you need to reach out to your care team. His headaches need to be resolved and his tiredness and non-participation in activities. I have a good idea how he feels when I went through treatment in 2013 and got to the end of it and I was feeling extremely tired. Then after chemo and radiation, I had a number of weeks to maybe a couple of months where all I wanted to do was sleep. But you have to push yourself to get up and get what you have to get done then sleep again. Get up and get stuff done, and sleep again. Just sitting around only makes things worse.

Sorry, I was so long but I hope some of this helps you. I hate to see people struggle but this recovery is a struggle and a fight and work, it is not easy.

So my main recommendation is to get with your care team ASAP and bring them up to speed on the situation and be completely honest and open with them. They should be able to get you to the next step. Also, remember to pray a lot and take some time for yourself each day to rest and destress.

Wishing You the Best

Take care, God Bless-Russ

And don't forget NEGU ( Never Ever Give Up )

SuzJ

Dana, he's very tired. he will do it when he can. Right now, sleep is the best thing

wolfsurvivor

I agree with what everyone is saying. I also think that mental health is often overlooked in cancer treatment. I had all kinds of mental health issues and when I said something it was 4 months till they called to say they had no openings. So while agree that his physical health is important don't over look his mental health. The mind can have a hard time feeling safe after all the procedures. I'm not saying your husband is off his rocker but understand that his mind and body are struggling and both need to be addressed.

As for the physical therapy I agree that it is important, after my surgery I did all my exercises but as my health issues added up over the years I have found myself struggling with doing my exercises for other ailments. I think me personally I feel overwhelmed and like it's just one more thing to do. So if you are going to talked with the care team which is good, make sure you are not telling on him and making them feel even more like he is to blame or not trying hard enough. I hope you two can get through this together this is hopefully a chance for your marriage to become even stronger. I hope my rambling has been some help.