Hi new to all

FormerMember
FormerMember
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Hi all, I’ve been reading on here for days and long nights and one moment reassured and the next terrified. A bit about my situation. I was having difficulty swallowing so looked and found my right tonsil so large it almost touched my left one. No sore throat at all but noticed it had a large dark red patch of around 3cm that I could see and could be larger if round the back. Panicking I called my surgery but was informed there are no appointments until next week and to go to a walk in centre if I was that worried. Went Friday afternoon and was given antibiotics and told to get an appointment with my doctor on Monday to be referred to ENT.  No appointments on the Monday but the doctor rang Wednesday and I got to see another doctor Thursday. He didn’t like the look of it and made an urgent referral to the ahead and Neck clinic which was Monday  (two days ago).  I had a camera up my nose to look at the back then a biopsy taken after numbing spray and told I would be called for an MRI asap.  Not had a call but know it’s only 2 days even if it seems like 2 years. I’m going crazy as I don’t want to tell my daughter (uni in London) anything as I don’t want to worry her. She had a tumour in her parotid gland (Acinic cell) when she was 13 and underwent immediate surgery and thankfully has had the all clear 5 years later.  Her dad, my late husband had SCC with the primary on the back of his tongue 2 years before her and had surgery, a neck dissection, radio and chemotherapy but sadly didn’t make it as it had already spread plus he also had motor neurone disease. Now I have this and cannot believe it.  Although I haven’t got my diagnosis yet I can’t help feeling like I know it’s going to be bad because I’ve googled my symptoms and looked at millions of images and can’t see what else it could possibly be, all roads seem to lead back to cancer.  I’m going out of my mind and already getting everything ready to sell my house and make things as easy as possible for my daughter. I live on my own and I have just moved to an area I don’t know so have not had time to make any friends yet and family are so far away.  I live on the east coast, my nearest hospital is Hull. Has anyone had any experience and know what they are like there with head and neck. Sorry if I’m being premature posting on here but think you are all so brave and wise and hoped you’d be able to help.  I’m such a wimp and don’t think I can do this alone.  TIA Carol

  • Hi Carol. First, stop looking at Google. The waiting for diagnosis is absolutely awful but it's all out of your control so just try to keep busy.

    I know how you feel about your daughter. I was diagnosed late 2018 and my daughter lives in Berlin. I waited to tell her what was wrong once I had a treatment plan and dates. It was very difficult trying to stay smiley and upbeat on Skype but I managed and when I did tell her it was better than I imagined.

    I too arranged my affairs and left notes full of instructions for my husband. I put my head down and it kept me busy. Thankfully I'm still here.

    Try not to second guess what's going to happen. We don't know till we know.

    Maybe you won't need us but if you do come back and we'll help you through. 

    Please please stop looking at Google. We usually have to wait 2 weeks for biopsy results. You'll drive yourself mad in that time.

    If you're having trouble sleeping a visit to the GP for something mild to help might be in order

    All hospitals dealing with head and neck cancer are excellent in what they do. It's a tricky area so they are well trained. You will be well looked after wherever you end up if you indeed do

    Let us know how you get on and fingers crossed

    Dani 

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

    I BLOGGED MY TREATMENT 

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

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  • FormerMember
    FormerMember in reply to Beesuit

    Thank you for your very quick response and advice.  Since finding this group I have resisted Google and it will stay that way now.  I didn’t realise it would be as much as two weeks and keep expecting a call now.  Will try and get on a start my garden project in the hope it will clear my mind and I will definitely let you know the outcome. Thank you. Carol

  • Hi Carol and welcome to the forum.

    I was diagnosed with base of tongue in May 2018 and finished treatment in August that year.

    Pleased to read you're going to stop looking on the internet.  I didn't find this forum until I was properly diagnosed and started treatment and scared myself silly with reading things on the internet which actually didn't relate to me as it turned out.

    I waited 2 weeks for the result of my biopsy.  The waiting is truly awful so getting stuck into a garden project in the meantime sounds perfect.

    Do let us know the outcome.  Lots of friendly help and advice if you need it.

    Take care.

    Linda x

  • FormerMember
    FormerMember in reply to LindaWT

    Hi Linda, thank you for you kind words and will stop looking at Google for answers plus I will try and forget about it or at least put it to the back of my mind for now.  I hope you are fully recovered from your ordeal and are living life to the full x 

  • Hi Carol Dani and Linda have said it all l will add my bit if and it’s a big bit if you need cancer treatment and are living near Hull it will be Castle Hill where you would  be treated. Yes I know if one other person who a few years ago I was in contact with they received  excellent care there so don’t stress about it .Just keep busy and await your results and fingers x  you don’t need us any more.But rest assured if you do we will all be here for you. 
    Gardening will keep you occupied.

    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

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • FormerMember
    FormerMember

    Are you in England?

  • The group is based in England ,Scotland, Wales and Northern Ireland with occasional contributors from elsewhere. 
    Is that what you meant ?

    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

    2 videos I’ve been involved with raising awareness of HNC and HPV cancers 

    https://www.instagram.com/merckhealthcare/reel/DBs8Y0niJ8N/

  • FormerMember
    FormerMember in reply to RadioactiveRaz

    Thank you Hazel.  It’s reassuring to know Castle Hill is okay should I need further treatments. I had my biopsy taken there on Monday. I’ve taken your advice and got myself busy planning my garden. Take care x

  • FormerMember
    FormerMember in reply to FormerMember

    Yes Lynne.  I’m on the East coast.

  • It’s reassuring to know Castle Hill is okay should I need further treatments

    The centre is a state of the art facility that is primarily for cancer patients from across the region

    Dani 

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

    I BLOGGED MY TREATMENT 

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

    Community Champion badge