Stomach tubes fitted soon

So, following my tonsillectomy and finding one inoperable.. it seems it’s HPV16+ I’m having stomach tubes fitted on Wednesday. That sounds like it’s got to hurt for a few days, a wound like that. Anyway it sounds better than a closed up throat not being able to eat or drink. 

Can’t say I’m looking forward to it. Everyday brings new stuff I’d never even dreamed of before. It seems to me that most of the loads of information’ we get flooded with is so clinicians canettheir consent forms signed. Or am I being unfair ? It just doesn’t all seem geared to preparing the patient.

Thank god for the Head n Neck Specialist Nurses for bringing some empathy and compassion into the situation. They have been truly amazing. They do prepare the patient and as such they are a huge part of me feeling safe. The rest of it can feel like a sci fi horror movie. I’m sorry if I sound negative. I think I’m getting exhausted.

  • Thank god for the Head n Neck Specialist Nurses for bringing some empathy and compassion into the situation. They have been truly amazing. They do prepare the patient and as such they are a huge part of me feeling safe. The rest of it can feel like a sci fi horror movie. I’m sorry if I sound negative. I think I’m getting exhausted.

    Hi. It’s their job. They are just as important a part of the Multi Disciplinary Team as are the oncologists, radiologists, and histopathologists. 
    But you’re right. Our CNSs are an absolute godsend. 
    You’re bound to be overwhelmed and exhausted by all this but don’t despair. It will all come together to cure you.Yes it’s sci-fi but not horror. 
    I have a medical background and devoured it all even though it was happening to me  

    Don’t ever leave a meeting not understanding what’s going to happen. There will always be time to explain. And what you forget to ask then you can ask here. Somebody will have an answer

    I’ll finish up by saying, don’t be frightened of your tube. It will be a little tender and take a week or so to settle but it may well save your life. Mine certainly saved mine. 
    Keep going. 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

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  • HinZenkodo. It’s a lot to take in. Try to focus in the HPV positive diagnosis , hpv  driven tumours respond well to treatment. We have to be told the pitfalls and yes it’s a lot to take in, but try to remember we don’t usually get all of the possible side effects. As for feeding tube my trust didn’t routinely offer pegs but I had to consent that if needed a ng feeding tube would  be fitted ,and week 3-4 I needed it. From others it’s usually around a week you may feel discomfort you can ask for buscopan for relief of the windy symptoms. You’ll be given pain killers and some trusts keep you in overnight. Remember the peg is there so use it when the time comes. I put everythjng down my tube feed all my water and medication it was a lifesaver and I credit the fact I had a fairly quick recovery. 
    Best advise take everythjng one day at a time ,don’t look too far in advance it’s a marathon not  a sprint. Once treatment starts everyth)ng falls into place. .

    My Macmillan nurse was a mine of information,and was the same in the recovery years.

    Try to watch some tv box sets I mind numbingly ploughed through 8 series of Game of Thrones no idea what it was about but it passed the time. ( ps have watched it since and enjoyed it ) 

    Theres lots if us in here who are living a good life post treatment. 

    Hazel 

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Everyday brings new stuff I’d never even dreamed of before.

    Ask here if you’re unsure. Thus forum is a treasure trove of information experience and cuddles when you need one. 

    Dani 

    Base of tongue cancer. Out of radiotherapy January 2019

    Blog about my cancer. 

    https://todaymycoffeetasteslikechristmasincostarica.com 

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

    Community Champion badge
  • Hi! 

    I know that the idea of having a tube fitted is daunting but personally I do not know how I would have survived without it. I had to use it very soon after the start of my radiotherapy  to have all my nutrients, water,  medication and painkillers. To be honest it became part of me and my life very quickly. It is a bit sore the first couple of days ( I did walk like John Wayne at first...Upside down.)  but otherwise it is easy to use and really not difficult to get used to. Try to look at it in a positive way as this will help you get better. Be kind to yourself, listen to your body and take each day at a time. Now is the time to binge watch all the series you have always wanted to watch. I slept a lot during my treatment and started watching series that I knew if I fell asleep I would still be able to  understand the plot....Thank you MAFS. Relaxed

    All the very best. We are all here for you.

    Fab1

  • Thanks Radioactive, some good reminders and boosters there. I will press on and take it a day at a time. It’s only when I read it back that I realise how negative I sound. I actually feel ok in the no ment. I should remember that Thumbsup tone2

    Steven

  • Thanks everyone for responding to my miserable moan - I’ll try to rein it in lol. This really is a very fine community and I’m so glad to have found it

    Thank you all Pray tone1

  • Hi Steven no apologies needed we’ve all been there got  the t shirt. This  is the right place ti express your feelings, rant moan cry etc we never judge but always willing to help. Can’t hear first hand experience. 
    Hazel x

    Hazel aka RadioactiveRaz 

    My blog is www.radioactiveraz.wordpress.com  HPV 16+ tonsil cancer Now 5 years  post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help  

  • Hi Zenkoda, you are in good hands our great NHS will look after you, during and after your treatment. It's good you are having a feeding tube, it is a bit uncomfortable for a few days after you have it fitted, but it is worth it for the job it does. I was 100% reliant on my tube 3 weeks into treatment, and used it for about 10 weeks, it was my lifesaver. It is a lot to take in, with all these things we have never heard of before, once your treatment gets under way, you will feel better about it all, the time will fly by, then you will be on your recovery. Take it all 1 day at a time, you will get there.

    Ray.

  • Thanks for the support Ray. I’ve had it fitted now and it feels ok. I just freak out from time to time Smile

  • You're welcome, I think most of us have freaked out from time to time. We're all here if you want to ask questions, give updates or just have a good old rant. Feel free.

    Ray.