Hi @kerstij, As @jrwilli1 has said, Please do vent!! We have a whole BMT posse of patients and caregivers here ready to be your lifeline! I’ve never been one to ask for help either but having a BMT is a walk through totally unfamiliar territory and it can really help to have people to reach out to, vent to, or commiserate with who know exactly what you and your husband are facing. There is no shame in asking for help.

Which leads me to your husband. He sounds like a remarkable man whom you mentioned is strong and proud…wanting to fight and basically recover on his terms. He’s certainly been through the wringer with his cancer, the BMT and his back surgeries.
Recovering on his own terms may be the fly in the ointment right now. A BMT is a different animal and it doesn’t have any hard and set rules for recovery except to absolutely abide by the guidelines set for us by our BMT teams. That means adhering to the strict schedules of our many meds, drinking copious amounts of water for hydration and detoxing, trying to get in the recommended amounts of protein, which admittedly is a challenge, etc.
The other difficulty is when the patient has been healthy and active most of their lives and then faces a leukemic event that requires a bone marrow transplant, life as they know it changes abruptly!
The fight is to return to robust health and get stamina back. We think it’s like recovering from the flu or a cold. It isn’t!! This is a very traumatic event both mentally, physically and spiritually(emotionally). It takes months and months to recover. And I swear, some days we feel super human only to be forced back to feeling like an invalid for a few days. It’s a roller coaster! I’m 5+ years post and most of the time feel like my former energizer bunny self. But if I over do, boom…I’m back to 2 days or so of vegging out. I’ve learned it’s not a setback. It’s my body talking sense into me…letting me know I’m not super woman and to just slow down!

The sore mouth gvhd is something that crept up on me about 2 years post transplant. My go-to now is liquid Dexamethasone. When I have a flare I take 2.5 to 5 ml liquid in my mouth. Hold it there for up to 5 minutes then spit it out. I don’t consume the steroids. It’s used topically, though there will be a small amount that is absorbed by the oral tissue. If there are small lesions that develop on my tongue. They get spot treated with a Tacrolimus based ointment. That seems to control things.
It helps to avoid hot, spicy foods. Acid foods, such as condiments, pickles, salsa. When I’m having a flare-up, children’s flavored toothpaste works better than anything with mint.
For a short period of time I had the gravel feeling in my eyes. I ended up with Systane nighttime lubricant instead of the gel. But it has to be applied religiously every night right before sleep. Intermittently, it didn’t work well. If your husband’s issues persist there are also speciality Autologous Serum Eye Drops made from your husband blood serum which can be very helpful. I know of several people using these drops.
I hope his sight starts improving and his gvhd issues slow down. Initially, even though I had a perfect match, my new immune system was hyper active. My doctor put me back on Tacrolimus to prevent me from having to use steroids for months. I took tacro for 2.5 years. I now take no meds except for the occasional flare of oral gvhd if I make bad choices in foods! LOL. I confess…dark chocolate calls to me and I must listen. But then I pay for those thrills. 😂
Drop by those other sites I posted earlier. You’ll be able to meet more recent chimeras such as @katgob, @mary612, @dwolden and a host of veterans safely navigated the BMT mine field. 😀