Sinonasal cancer

  • 15 replies
  • 74 subscribers
  • 382 views

Hi everyone, I'm new here and just wanted to introduce myself and connect with the group. Also wondering if anyone else has been through treatment for sinonasal cancer? I'm 3 weeks out of a 7 week course of proton beam therapy daily plus cisplatin once a week. I'm getting a lot of the same symptoms and side effects that accompany all types of head and neck cancer treatment, but over all I think I'm doing okay. The emotional side is my main struggle, I'm worrying constantly while knowing that worrying doesn't change anything. It just makes me miserable on days I could be enjoying, rather than just wasting my time thinking of negative outcomes that may never happen. But I know it all takes time and small successes are to be celebrated - I'm starting to eat more food on top of the Ensure drinks! So hello to you all and I'm looking forward to being part of a group of people who really know how this all feels.

  • Hi, Beepa welcome to the group. You are still very early days into your recovery, the side effects will ease up with time, the worry is natural and normal after what you have just been through. You seem to be doing well with your eating, just try soft foods that go down easy. You will get there. Any questions just ask.

    Ray

  • Hello Ray, thank you. Yes it's early days and I'm aiming to stay positive, but we all know how hard that can be. I have no appetite. Thank goodness for Ensure drinks. How is your recovery going? I guess you're further along than I am?

  • Hi, Beepa, I will be 7 years post treatment in November, so I'm aware of the emotions and worries, most of us have. Recovery can unfortunately be a long-drawn out thing, sometimes it feels like 1 step forward and 2 back, but you will get there, just give yourself the time to heal.

    Ray.

  • Hi  

    Welcome to our little community. 
    Our bodies are exceptionally good at healing but our minds take a huge battering too and that is harder to sort. 
    This fear of recurrence is dreadfully real and some of us are just hard wired to worry. 
    I have always been a glass half empty girl so I do know how you feel. 
    Take a look at this piece on recovery from cancer by Peter Harvey. It resonates for a lot if us. 

    https://www.workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Thank you Ray, I will do that. Thanks for the reassurance. 

    Beth

  • Hi Dani. I read the piece by Peter Harvey and all of your blog. Both resonated with me. I feel I have pushed myself too hard to keep up with all the things we're told to do, before I'm well enough to manage them. I'm putting more pressure on myself than is necessary. I've been worried about losing too much weight and not getting enough nutrients, worried about missing jaw/swallow exercises, worried about dental care, basically about getting everything wrong and ruining my chances...it's a lot isn't it? Time to calm down, follow good advice and build up gradually. Thank you for the info.

    Beth

  • Beth. Getting through treatment is only the beginning. Be kind to yourself. Remember this is your time and you need to look after yourself.

    I’m glad this place is helping you. I couldn’t have got through as well as I did without all the kind selfless people who held my hand here. 
    Honestly things do get better slowly. Hugs 

    Dani 

    Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019

    I wrote a blog about my cancer. just click on the link below 

    https://todaymycoffeetasteslikechristmasincostarica.com 

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

    Community Champion badge
  • Hi As the others have said it’s early days into your recovery. Take everything one day at a time some days 2 steps forward one step back but you’ll get there   My worst time was the 3-4 weeks after treatment then things slowly start to improve. 
    be kind to yourself don’t push yourself. It’s a marat not a sprint.  

    hugs Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help

  • Thanks Hazel. I guess I'm at the worst point. I feel better just for chatting with you, Ray and Dani and knowing you all got through it. My mind is much clearer this evening, I'm calmer and less stressed. So thank you all for being here and replying to me.

    Beth

  • Hi Beth. Any time , you can’t beat the support of people who have walked a similar walk to you. Youre not alone pop on anytime there’s usually someone around in the daytime. I’m sorry didn’t see your post earlier  we’ve been in the road a few days.cancer can be a lonely place famiky and friends mean well but first hand experience can’t be beaten  

    hugs Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now  6 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help