Tonsil cancer - Chemo/radiotherapy treatment imminent. Advice welcomed.

Hi folks, 

....another new member of the club none of us wanted to join! 

I’m 48 and mum to a wildly energetic six year old son. Husband and I have been in lockdown, working from home since March. 

I have primary cancer of the left tonsil and secondary cancer in the adjacent neck lymphs. Plus pre-cancerous cells in my right neck lymphs. My chemoradiation starts on July 6th - I’ll have a PEG fitted first - then a total of 30 radiotherapy sessions and more chemo midway. 

Any and all practical, emotional, psychological advice welcomed please folks. Any tips, ideas, things you wish you’d know before starting treatment? 

Thank you and kindest wishes 

Jo

  • Hi Jo,

    My name is Janet, 20 months ago I found a lump in my neck that after biopsy turned out to be secondary cancer  originating from right tonsil and after scans decided on operation to have it removed on 5th Feb last year  .Op went well and they removed the cancer and I Came out of hospital in 5 days. Six weeks later had 33 treatments of radiotherapy , the final 2 weeks were hard as I couldnt eat and ended up with feeding tube for a few weeks I have been on an emotional rollercoaster but am still here to tell the tale thanks to all the doctors and nurses who helped me and of course family and friends. I am pleased to answer any questions and help you through it if you need it ,as I know what your going through.

    Best wishes

    Janet

  • Dear Jo,

    My poor love. You are about to embark upon, quite frankly, some brutal treatment.

    I completed the self same course about 18 months ago, and although I am now clear, touch wood, it turns your life upside down. It did to me and continues to still do so. Saliva and taste issues persist, and your whole approach to eating, and food in general, is about to undergo profound change.

    And yet, you will come through it. With self belief, support from family, especially with the dreaded PEG, you will come through the other side. It can be done, but I won’t deny it can be hard.

    use the wisdom of your specialists, nurses, radiotherapists, all of them, because you are not alone, and there is hope on the other side.

    Good luck, stay strong, and keep us all in the loop as you progress, because you will win.

    My very best,

    Mark.

  • Hi Jo, I'm new here as well in fact this is my first post.

    I underwent surgery towards the end of August where I had one tonsil removed and all of my molars and premolars top and bottom removed at the same time, I had a PEG fitted, but I forced myself to eat all the way through my treatment, you may want to try this yourself, as by keeping everything moving your recovery will be a lot easier, so even something like soup will help with the swallowing action.

    I too have a mad 6-year-old, however, I haven't told him about having cancer, and nor did I inform my father who is 78 as I didn't want either of them to be worried about me, I did tell everyone else in my family, but I waited until I saw everyone face to face, rather than informing them via email or text. But I did get told off by my daughter who lives some distance away for not telling her sooner!

    The peg tube does take some getting used to, and it does get in the way quite often, or so I found, until I started coiling the tube up and then kind of twisting the loose end around the coil, this helped me a lot, so you may want to try it yourself.

    Emotionally I don't think it's ever really hit me that hard, but that is probably because I have lots of other problems, which I take a hell of a lot of medication for, so I'm kind of floating in a brain fog for most of the day, and the morphine that I already take for lower and upper spinal problems probably masked any pain or symptoms that I may have had from the throat cancer. You will naturally be anxious as hell with wondering what is going to happen from here on in, talk not only to your family but make use of the Macmillan Nurses, they are wonderful and will bend over backwards to try and help you in any way that they can.

    Finally, you are in the best hands with the NHS and you will find that now the ball is rolling, things will happen fast! The NHS doctors and nurses are simply brilliant, so you are in very good hands.

    Wishing you all the best.

    Matt.

  • Hello Jo

    I am 7 months post treatment for virtually the same as yourself with chemo week 1 and 5 and 30 RT sessions.(I also had surgery-neck dissection).

    I found double cream useful to get in as many calories as I could and peaches were welcome. Little and often for food helped me through the worst and hubby found a recipe for a 100 calorie milkshake drink (I didn't have any feed tube) and kept my swallow ability as normal. Lots of water too as I think being hydrated helped me through. I got given Fortisip drinks (enriched drinks) that helped keep my weight on during treatment and after.

    RT mask making I found the thought frightening but, the reality was different and emotionally kept me ticking over as it was a structure through all of this and the team become a friendly lifeline. I thought I would be on the table for 30 minutes but it was only 4, if I had known that beforehand !! Also use your support team for anything. Macmillan, dietician, speech etc, they are very supportive and mine were so inspiring.

    Meds. Take whatever they give you. I was advised by a chemo patient sitting next to me to take the anti nausea pills even if I felt ok and she was right, I never suffered. Also, some meds like co-codamol bung you up so do keep an eye on this as it can take you by surprise.

    Trying to think of anything else !

    All the very best

    Tricia

  • 1000 calorie milkshake drink !!

    Also just remembered that using a facial steamer a few times a day for a few minutes helped with phlegm and was told it was kinder on my vocal chords than constantly trying to physically clear it away.

  • Trying to post a reply. Won’t let me 

    maybe too many words 

  • I have been having the same problem Dani , i will report it to admin, hope all is well and this message sends , take care.

                                                                            Chris

  • Hi Chris 

    Not just me then

    How’s tricks?

    Hope you’re keeping well and sane. Xx

  • All good thanks Dani, i think im still sane. Hope all is well with you and your bees Slight smile

                                                                                                Chris xx

  • Hi Jo this is Hazsl I am 22 month post radiotherapy for tonsil cancer with several affected lymph nodes. Yes welcome to the club no one wants to join but now you’ve found   this site there are quite  a few of us in here who can help you.

    the treatment is  hard but if u can do it at 61 anyine can.

    I had 35 radiotherapy sessions and 2 chemotherapy. I have a detailed blog details below with links to other blogs and sites .

    Feel free to ask any question sor if you prefer send a friend request..

    positive mental attitude got me through it. 

    good luck keep in touch 

    Hazel x