New here - 26yo looking after Dad (72) with tonsil cancer

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My Dad has tonsil cancer (T4 in terms of size of tumour) and is on his 3rd out of 7 weeks radiotherapy. He has a feeding tube fitted and is starting to use this more, mostly with Fortisip drinks

Generally he isn't eating or drinking as much as he should and I'm worried this is going to get worse. He said he doesn't want to eat or drink because he can't taste anything so doesn't enjoy it, can't eat most things because of the pain in his mouth and throat and he said some things even taste rotten (e.g flavoured water). No matter how much I or my little brother encourage him, he is reluctant to eat/drink very much. I'm worried this will get worse - there's over 4 more weeks to go and I know the side effects will continue to build.

This week he's starting to cough a lot and is struggling with throwing up mucus. When this happens he becomes really distressed. 

He also thinks he's going to die and I'm finding that really hard. He keeps pulling me aside to tell me important information as if he only has days to live. I keep trying to remind him that his prognosis is positive (oncologist said intention is to cure his cancer) and that he'll get through it but he's understandably so low.

I'm personally really drained and feeling a lot of pressure (along with my little brother) because wider family haven't been making very much effort. It's hard not to feel resentment over that. I'm trying to juggle work and care for my Dad, alongside processing all of this. Sorry this is a lot of word vomit. 

Does anyone have any advice? I want him to know he can and will get through this. I want to know that we'll all get through it together.

  • enerally he isn't eating or drinking as much as he should and I'm worried this is going to get worse. He said he doesn't want to eat or drink because he can't taste anything so doesn't enjoy it, can't eat most things because of the pain in his mouth and throat and he said some things even taste rotten (e.g flavoured water). No matter how much I or my little brother encourage him, he is reluctant to eat/drink very much. I'm worried this will get worse - there's over 4 more weeks to go and I know the side effects will continue to build.

    Hi  

    This is normal. Just get all his nutrition water and meds through the tube. Forget oral intake entirely apart from doing his swallow and jaw exercises. I didn’t “eat” anything for eight weeks. AIM for 3 litres of water a day in top of his Fortisips. It will help thin his mucous. If he is getting really sticky there is a drug called carbocysteine that some people here benefited from. I was 68 when I started treatment and I was five years clear in January. Tell him that and get him to look at my blog linked at the bottom of this post. 
    Hazel   has a really good blog too. Just click on her name. The blog is linked in her profile 
    Make sure he has enough pain relief. Ask the radiographers to keep an eye on him at each daily session. 
    He’s frightened and has lost control of what’s happening to him. This cancer is very curable and cure rates are in excess of 90% and when his oncologist tells him his treatment is radical aiming for cure he means it. 
    Macmillan had counselling available if he feels that might help 

    https://www.macmillan.org.uk/cancer-information-and-support/get-help/emotional-help/bupa-counselling-and-emotional-well-being-support

    and there is a carers’ section that you might like to join 

    https://community.macmillan.org.uk/cancer_experiences/carers-only-forum

     

    Have you a Maggie’s centre you can both drop into? 
    They would welcome both of you for a chat and a little respite from the care and worry. Talking to somebody who understands can be invaluable. 

    You need some time for yourself as well so keep trying to rope the rest of the family in. 
    Stay here so we can help you. Maybe even get your father to look in. 
    All us not lost. The treatment doesn’t last forever and most of us  get better 

    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
  • Hi Pinkponyclub97

    I am so sorry to hear of your Dads T4 diagnosis ( and how hard this must be for you and your little brother).

    I was also T4 tonsil cancer ( age 55)which had spread to base of tongue , activity in left Tonsil and in several lymph nodes on right side of neck.

    Thinking its the end is normal , I thought about planning my funeral writing cards and letters to my too sons ( then 17 and 25) Its such a challenging time and your brain wants to takes you to some dark places.Tell him to try and keep his brain busy watch this he likes on TV ( I lived on iplayer ITV+ and netflix from last october and still do on bed days as friend leant me her ipad and bought a cheap padded stand from amazon.

    The mucus was horrific, I started with spitting then used boxes of tissues manually pulling it out untill  my Cancer Nurse Specialist(CNS) gave me a suction machine which really helped x

    I used my feeding tube everyday ( no food  or drink) as I was so unwell for four months then managed to sip water and tea.I found chicken soup strawberry trifle less rancid tasting than anything else.( soft foods essential easier to swallow)

    I promise you it does get easier but it takes a long time big tumours need radical treatment and sadly it gets really tough before it gets better…… but he can do it …he van make it through but you all sound like you need some support .

    Speak to his team at the hospital tell then of any pain or /changes .Email or talk to his CNS  or Mcmillan they can also help finacially . If he gets really low or anxious and wont engage with Counselling the Dr may prescribe antidepressants to get him through I bought a 2.99 pill crusher and took all meds via tube ( must flush tube with syringe of water before and after ( still use it ).

    Stay with us , there is bever a daft question … someone will always try and support you and your family x

    Im 5mths ipost treatment and just experienced my first holiday …life feels sweet again tell him to trust in his team  and never give up hope for a positive outcome(90%!!!)

    Sending you all a big hug

    Debbie x

  • Sorry forgot to say Im dyslexic some misspellings xx

  • Hi I am 12 weeks post treatment and 6 years younger than your Father.  You are having it tough, but you are doing amazingly well for him along with your younger brother.  My sons stepped up to the plate when needed during my treatment and I can't begin to tell you how grateful I was for their support.

    If he has a feeding tube fitted get him to use it.  There is no shame, only benefit, in using it to get nutrition and hydration it.  He will feel better for it.  He can also take pain meds through the tube so no swallowing is needed.  If he can sip water orally that will help in the long run.

    I know what he means about pain and taste.  Unless you have been there it is difficult to understand.  I found tap water tasted like sea water!  A sparkling mineral water worked well for me at cutting the mucus.  Maybe leave it open for a while so the bubbles are not so aggressive.

    I have to tell you that the end of treatment is just the end of one phase.  There is a long road to recovery that will need lots of TLC.  Often it is 2 steps forward and one back with lots of frustration.  Be prepared for that and the support he will need at home during that phase.

    Finally, having nursed my mother through cancer I totally understand the balancing act you are doing.  I was lucky and had an amazing boss who let me manage my working patterns to suit my caring needs.  I hope you have the same. 

    I would also echo what Dani said about the Maggies centre.  They were a lifeline for us.

    Peter
    See my profile for more details of my convoluted journey
  • Hi Pinkponyclub

    T2N1M0 tonsil cancer HPV16+ Finished Chemoradio June 2023....age 68

    Treatment is very very challenging for patients and carers, lots of low points in the journey but things will get better....unfortunately this will take time.

    I had a PEG feeding tube in place before start of Chemoradio ....would have been in big trouble without it, still suffered rapid weight loss....16 kg in 2-3 weeks....ended up in hospital for 12 days to stabilise things....and yes at times I did think that I could be on the way out....tough gig....Oncology teams were a massive help.

    But things do improve ....I have been to Canaries twice in the past 7 months....eating well....taste returning, now about 75-80%....appetite improving every week....healthy BMI....

    As for help from family and friends....the word cancer frightens the life out of people, many shy away from it....you will find it very hard at times but hang in there your Dad is reliant on you....Tonsil cancer HPV16+ is very responsive to treatment....stay positive.

    Take care and best of luck

    Peter

  • Hi as Dani sats get him to read my blog. . It’s hard but it’s:worth it I’m 6 years post treatment now 67 and living  a great life b everything you say I’ve been there and come

    out the other side. It’s par for the course the taste and mucus sadly there’s no magic cure. But tske it all day by day. And he will get there. It’s vital to maintain. Hydration nutrition and most if all pain relief. 
    hugs Hazel xx

    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 Hazel, 

    Thank you so much for this. Your blog is such an important resource and I'm so glad you/others have signposted me there. xx

  • Hi Peter, 

    Thank you so much for your reply and for sharing your experiences. It's great to hear how well your recovery has gone so far - especially your sense of taste coming back as loss of taste is a huge source of upset for Dad at the mo.

    All the best 

  • Hi Peter, 

    Thank you so much for your reply. This was a really comforting read - your comment about sparkling water actually inspired me to buy various waters/squashes/juices for Dad last week for him to try and see what sticks - tap water seems to be the only thing at the mo but it's better than nothing!

    Fantastic to hear that your recovery is going well so far and wishing you all the best going forward. Thanks again for such a thoughtful response. 

  • There are two Profiles you could look at too

       

    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