Hi everyone

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Just a quick intro. I've just been diagnosed with T2L1M0 P16+ in the left tonsil. I've been given a truck load of info which I'm still digesting. The learning curve is pretty steep. I came here to learn about others' experiences. I took three runs at the mask. Done now (with a little help from lorazepam + some calming techniques). Reading some of the posts here tells me this is a safe place to air some concerns. It's also filling in some gaps in how to prepare for the journey ahead. When I was told I had cancer I felt pretty lonely even though I'm surrounded by a loving family. I can't fault the professional medics who I've interacted with. The missing bit that the medics can't easily offer is the chance to speak to someone who is going or has gone through the same process. I suppose once treatment starts that might change. Anyway, I think this place is invaluable in that regard. Maybe I'll post again once things get started.

  • Hi there. Im just starting my journey into the unknown with tonsil cancer. Had my peg tube fitted 2 days ago. Still very sore. To have 8 teeth out in 2 weeks then mask fitting and start chemo radiotherapy in october. So a lot going on. Glad to hear your story. Any tips?!

  • Hi  

    Welcome to our little community

    Any tips?!

    Stay with us here. We have your back through this. There’s usually somebody around to answer any question or just listen. 
    Tips? Dont be brave, do as you’re told by your team and tell them every day how you feel. They are there to look after you. 

    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

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  • Hi   welcome to the community. I've not posted much since the first post above but I've now just finished week five of six weeks of radio so one week left and no more chemo. The mask was a sticking point for me until I learned how to relax and slow my breathing, a bit like meditating. By week three it was easy. It was amazing to know that my mind changed that much from a freak out to a calm state. I hope you have an easy ride with it. I haven't needed a peg but I know someone who had the same diagnosis and had one fitted and he told me it was a life saver in the latter days of treatment. Chemo usually comes with steroids to give you a "lift". I found it difficult when the steroids stopped working. You may have a different experience but as  says tell them how you feel. For me after the second one I was switched from cisplatin to carboplatin which didn't have the same sickness problem. I used the Wellbeing Team to help me through the first few weeks. They had lots of tips for coping with things. Also, you might not think you have any option but to go along with things. Some things can't easily be changed on this pathway. I was surprised at how much help I got and how the meds changed by me reporting my issues. There is a highly qualified team going to be looking after you so make sure you keep them updated on any issues no matter how small.

  • Hi 3D man 

    Sorry I’m so late to reply. I hope you are coping one day at a time the lovely people on this group are a great source of advice/support and listening to any fears or concerns you have .

    Debbie

  • Hi 11bear,

    Feeding PEGs are usually sore first week uncomfortable for following week then they normally settle down Buscopan helped me with cramping ,if sore just take pain relief ( ask team what they suggest ).

    My PEG became my lifesaver as I had a bad time from day 1 so used it 24/7 for feeds/fluids and meds. Still have it but now take everything orally.

    I also had 8 teeth removed under local as no time to wait for  apt for general. It was traumatic at the time but healed quickly.

    Top tips..take 1 day at a time…take a person or notes or ask a member of your team to write summary at appointments as most of us can’t take in all the information given.Get support from friends /family/ hospital/Maggies centre(if you have one)you may need support with transport etc. It will probably get tough but luckily for the majority of us there is light at the end of the tunnel .

    The members of this group are very supportive and as everyone’s lived experiences are different there is a wealth of knowledge available.

    All the best for the coming months

    Debbie