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

pinkponyclub97 said:

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 pinkponyclub97 

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 RadioactiveRaz  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 

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.

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

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

MarkEL  Petlamb