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Newly diagnosed

Lindyloo112
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Hi, I wasn't sure whether to post here or in the 'I'm new' bit, so apologies if this is the wrong place...I'm new Slight smile

I have been to get my diagnosis and treatment plan today.  It is my right tonsil but they cannot operate so I have been told radiotherapy is best for me. I can also have chemo with it and he has explained all the extra side effects if I do. My nurse seemed to be guiding me away from chemo because of my history with blood clots. I have another meeting with her next week, she said she would go over it all again.

I really don't know what questions to ask. I don't even know what stage my cancer is... meant to ask that but my brain shut down. All I could think us who is going to look after my pets. 

What should I be asking when I go next week to see my specialist nurse? I have read all the pack she gave me. It's all a bit HUGE at the moment. 

Thanks Blush 

  • in reply to RadioactiveRaz

    Sounds fab Hazel, I'm sat here with gloves on snuggled under a fleece blanket with the dog  and being walked over by a cat who has now settled on the dog! Haha...nuts! X

  • Hi Lindy Loo I’m Angela and 8 months post chemo and radiotherapy. I just wanted to say that the blood clots are a real risk as a side effect and I suffered from them after my 5th chemo infusion. This led to 6 months of daily injections and a new wave of concern over and above the cancer treatment. I would take the guidance of your team as they know your position and chemo sometimes is not the best treatment for some. All the best for your treatment x

  • in reply to Anghog

    Hi Angela, thanks for this. My nurse did question if it was worth the risk given I've had multiple clots before. I'm seeing her again on Tuesday so will have a list of questions for her...this one top of the list. Strongly inclined to say no to the chemo!

    I really appreciate your reply x

  • Please stop make tea and breath you will get through this no horror story hard Road but every one makes there own journey finger's crossed sending you best wishes Heart️ 

  • Hello. I’m 54 & now 6 months post treatment for hpv 16 in right tonsil plus  lymph node

    I had bilateral tonsillectomy plus part of tongue removed  Then had a PEG fitted ( abdominal feeding tube) followed by 6 weeks of chemoradiation  6 x chemo & 30x radio  

    It has been immensely challenging but I returned to teaching 2 weeks ago & am feeling pretty much like myself again  

    Please feel free to ask me anything

  • in reply to Lindyloo112

    Hey, don’t apologise for how you feel I’m 6 months post this treatment and at first it’s so much to take in and intense with appts you feel totally panicked. I too freaked about tube there are lots of types I gave in and agreed to one and hated it but like everyone will tell you that’s been there you will prob be pleased it’s there at some point. They ask you to drink lots of water throughout treatment and I began to struggle towards the end with the volume so tube came in handy. Don’t worry about zoning out it stops you overthinking, the team of nurses will get you through it and keep thinking once out the other side it’s just recovery and then you get your life back! Here if you need us xxx

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