Update on my check ups

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Hi 

I messaged before about not hearing about my next check up. I finally got through to someone in the head and neck dept. He said I was scheduled to see my consultant but that had been cancelled and is unsure why so is looking in to it. I also said am I meant to be having pet scan and MRI he said no it’s just a check up with surgeon. I told him I was really anxious as have been messed around before and worried I’m going to be missed. To be honest he sounded like he had no idea as well!! So I’ll wait and see! So stressful

Natalie x 

  • he sounded like he had no idea as well!!

    Is that your CNS? 

    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 Natalie do you have a dedicated cancer nurse worth trying them. I also had my consultants medical secretary s email and phone number. It’s worth trying to find that. You can usually find on hospital website. It’s unfair to be left waiting   

    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

  • So he called back to say no scans and now has a new date for me to see my consultant which is end of October. Yes I do have a CNS but unfortunately she’s never available always busy on rounds.  I leave messages but she never calls back. I went through to the main dept this time. I think when I see my consultant I’ll ask him exactly what checks I’m meant to have. He was annoyed last time when they missed my MRI.  So tricky hate causing a fuss but then makes me upset they put me in this position. 

    Thank you everyone you make me feel like I’m not going mad 

    Natalie x 

  • Natalie. We all at some point had to he pro active you’re not going mad yes ask consultant what your 5 year plan is. I knew mine from day 1 kept a diary and chased appointments if they weren’t forthcoming

    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

  • Definitely you need to know your follow up plan. I had my first monthly appointment sept few days later got in my Oct check. It reassures you you're not forgotten.x

  • So tricky hate causing a fuss

    You aren't and the doctors are used to it I'm afraid. They are under an awful lot of pressure and they are run ragged trying to make amends and keep up wit a situation that is not their fault. Do the best you can in chasing up. You can't do better than that

    I was on six week checks in my first year but things seem to be more spaced out in recent times

    PS

    If you have time might you put a short bio into your profile.

    I checked back and your RT finished in February so you should be getting six to eight week checks

    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
  • You are not causing a fuss at all and no you are not going mad. They have many patients to look after and unfortunately the system can fail. You do not want it to fail you. Therefore you absolutely need to keep on chasing and make sure you know exactly what the plan is to look after you so you know what to expect and you know when to chase if needs be. Even if you feel you are annoying them...ignore these feelings. They will get over it. Your health and your life are the most important things. You could talk to MacMillan to explain that would like to have more support and you cannot turn to your CNS nurse for help either. You need to feel supported and cared for. 

    Sending you loads of hugs. 

    Fab1