Impatiently waiting to return to "me"

[BrittACC]

Hi all, thought I'd share my story in case it resonates with anyone. 

I'm a 32 year old female who was diagnosed with stage 2 Adenoid Cystic Carcinoma (in my sinus) in September last year. I've had three surgeries - a polypectomy and two resections and finished 6 weeks of radiotherapy in January. Before my diagnosis I was a very busy person. I work a fairly demanding job, was out most evenings, rode my bike and did a lot on the weekends. I walked my dog every day and went to a lot of gigs. 

After my diagnosis my life didn't slow down much. I only had a few days off work after each surgery and managed to see people and get out. Physically, I couldn't do too much for a few weeks after each surgery, but I wasn't too bad considering. It wasn't until radiotherapy that I got really knocked. 

I stopped working in my last week of radiotherapy. At that stage my mouth and throat was riddled with ulcers and eating was a real struggle. I wasn't sleeping much, as my sinuses were all blocked, causing my mouth to open, which in turn would make my ulcers dry and painful and wake me up every half hour or so. I felt completely weak and couldn't manage much at all during the day. My jaw pain was pretty constant and the skin on my face was raw and swollen. I didn't have the energy to see my friends. My weight since September had dropped about 7 kilos, and I didn't have heaps to lose in the first place. 

Despite the situation, and a fairly grim Christmas and New Year, I managed to keep my spirits up somewhat, knowing I needed to find some resilience to get through. And I did. 

It wasn't until after the radio was finished and my symptoms started improving that my spirit has taken a hit. I'm aware the recovery journey is just that; a journey, and I can't expect to wake up and feel back to my usual self. But the plateau of recovery is proving the hardest part. I'm back at work. I'm seeing my friends. I'm out and about, but I'm not "better" yet. I still can't enjoy food properly. Gigs are too much for me. Riding my bike makes my head throb. I've started working on regaining my strength but I feel so feeble. I go through about a box of tissues a week and have to bring my little pile of sprays, ointments and constant hydration with me everywhere, even if I'm just walking the dog. 

I would love any tips on managing this (hopefully) final leg. I want my life back!

[Lampwork54]

Hi Britt,

Adenoid cystic carcinoma is horrible!  Mine was in a salivary gland which was removed through the bottom of my mouth and through the front of my neck.  30 radiation treatments.  

Long term effects 5 years later.  A dry mouth that I am constantly hydrating.  It's still hot and supersensitive.  Can't have anything spicy as it burns my mouth.  No lime, lemon or salt - dehydrate me very fast.  Be careful with any sweating as this can very quickly dehydrate you.  I had to have special dentures made to fit the new shape of gums and it took a year of fittings.  Can't chew. Can't bite anything except very soft food.  Completely lost appetite after radiation, but I lived.  

Yes, there are adjustments.  I lost a great deal of strength and energy throughout this time.  My days are spent enjoying what I can.  I make really good soups, loaded with vegetables and nutrients that I try to have at lease one meal a day that is a must.  Foods I had constantly, avocados, eggs I suddenly couldn't eat anymore.  It's hard to get variations.  I started Ensure earlier this year and mix it so it is 2 servings in one hit. 

I think recovering from this is really hard. I don't like going out to dinner as my serving of food is too massive for me to eat and it feels wasteful.  My days are mainly spent feeding the hungry dragon of thirst.  

Unfortunately, there are no miracle cures and many side effects that can make life a little less enjoyable so I focus on the better times, happy time with family and friends, my dogs and my hobbies.  I am still here watching my children with their children grow and grow.   

I hope you get better tips and answers from others and wish you well on your recovering journey.

[BrittACC]

Thanks so much for replying. Sounds like your journey has been really difficult, I'm so sorry to hear. 

"The hungry dragon of thirst" is a beautiful metaphor, and completely apt! I wonder if it will be more or less satiated now we are in the year of the dragon. 😅

I'm hoping to find peace with the new order of things, when the dust has finally settled.