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!
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