How can I be a supportive caregiver? HPV Squamous Cell Carcinoma
Hi my husband is just in the diagnosis stage of what two doctors believe is HPV 16 Squamous Cell Carcinoma. His biopsy was reviewed then sent to the Mayo clinic for further review. Now we wait… but while we wait.. how does everyone deal with friends and family who mean well, but are hurtful when they tell me to ” buck up” and get through this! I feel like I am doing the very best I can right now to not completely lose my mind. Waiting is complete torture!
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Hello and sorry to hear your husband’s news. I’ve had SCC diagnoses three times and I’m still here and reasonably functional! One of the hardest parts is what you are going through right now. Once the diagnosis and treatment plan are complete you will feel a lot better. The waiting is hard, I know. I would suggest lots of nice food because HNC treatment usually means a period where food intake is difficult so enjoying food while he can makes sense. It takes a while to get back to eating after surgery and radiotherapy causes a sore mouth for a few weeks or months. I understand what a shock those words are. Usually a sort of battling instinct kicks in quite soon as treatment begins and then the emotional pain recedes. Wishing you all the best.
Thank you for that! Im so sorry for the trials you have endured! It is very fearful to not know what lies ahead! Many prayers & hugs to you!
I know. And I would never minimise the struggle but we can still make a good life for ourselves after treatment. Go well.
I am so sorry you had to hear this words. Alpaca is right: After the initial shock, the warrior in your husband and yourself, will kick in. I recommend you get a binder with dividers, and keep a couple of copies of the initial diagnose in the front pocket of the binder. Make as many divisions as needed, one for notes and ?, one for medications, one for doctors, etc. Get well organized and make it his life’s new project. We will be here to help and cheer, and share, if needed our expertise. I had my 4 year check-up yesterday, and I am grateful every morning for another wonderful day.
Loli thank you for your encouraging words… I am hoping 4 years from now we will feel as you do! Thats a great idea to get a binder and dividers… I would have never thought about it!! We dont know what we are in for, but Im guessing organization with notes, appts, etc will become very important! Thank you again! I am sure as this progresses I will need a shoulder to cry on!! Much love & hugs to you!
The binder became my mom’s lifeline and almost strength-giver as she accompanied my father in his cancer journey. More than once she produced test results that weren’t in his medical records during an appointment (PS: this wasn’t at Mayo, but rather the community hospital where his treatment was continued.)
She was able to quickly produce a list of all his medications when needed. Your pharmacist can print out a record of all his meds and supplements (if any) for you.
I fully endorse the idea of a binder. I didn’t use it but it would be a very useful resource. I just didn’t think of it!!
@chapmanswife I am so sorry to hear the news. Even though it was expected, it is still a shock, isn’t it? Give yourself time and get as much rest as you can. Praying for you both as you face this new challenge! Teresa
I got a binder & dividers.. trying to set it all up! Any advice on what catagories to use? I have 8 dividers.. also printed off a calendar, included loose paper & spiral notebooks…thank you again for the awesome advice to get organized!!
I set up a binder for my husband who has salivary duct carcinoma. These are the categories that I have found helpful: medication list, tests results, Primary physician, radiologist, surgeon, oncologist, treatment, research, appointments, insurance. I keep several sheets of lined paper in each doctor tab to record notes. Unfortunately, Ken was stage 4 when diagnosed, so surgery and radiation have not been an option. He is currently taking immune therapy.. Keytruda. The therapy has damaged his endocrine system, so we will be off for 9 weeks while taking steroids. The good news is the tumors do not appear to be growing. We are scheduled for a scan in 2 weeks and will resume therapy in 3 weeks. Being organized is key to being able to support your husband. This is one area that I can control.