Hpv + tonsil and tongue base cancer. 7 weeks post treatment

Hi Floss

What worked for me was little sips of water to try to clear the gunk.

I tried lots of soft food as early as I could.

Have you tried to swallow soft stuff and what pain killers are you on?

Seven weeks is pretty early in recovery, I was still reliant on my PEG for most of my calorie intake, also managed small portions of mash and gravy or mild cheese sauce, things started to get better after weeks 10-12, Caphosol helped with mucus, Difflam, oramorph, MST and Biotene helped with pain.

I can manage little sips of water, sometimes it goes down fine and others it's like it's hitting a wall of phlegm and it actually squelches when I swallow  it's gross lol. Everything feels and tastes disgusting and I'm a bit scared of choking,  as I get quite bad coughing fits. I'm under the SLT team and seeing them Monday . I've just weaned myself off zomorph over the last 2 weeks on the advice of my oncologist,  but take paracetamol and have oromorph when I need it.

Hi Floss.  It's a horrible phase which I can still remember 12 years later.  I used to find that rinsing my mouth with flat cola helped a little, and also sucking ice pops.   I used to keep a bucket and a paper towel roll by my side.  I can't remember the name of the product that used to help with my sore tongue, but do have a word with the staff when you go to the hospital on Monday, and see if they can find something to make you a bit more comfortable.  

Hi Floss,

Dig in there, it does get better!

Earlier this year i was there, where you are now, and I stopped oromorph quite quickly as it made me feel sickly and unwell. I found regular doses of soluable paracetamol the best option for pain management.

I had a "spit cup" by my bed for about 4 weeks post CRT and thought it the worst, but it does get better!

Keep up with the PEG/RIG feeding as it really is a life saver, but do slowly introduce softer solids (porridge with sliced up banana, scrambled egg, fish pie, etc) to get those throat muscles working again.

And when you achieve a new high with eating and swallowing, like having (and tasting) a ham and cheese omelette for the first time again,  let people know and celebrate the fact that you are getting better. There's nothing better than sharing and celebrating each and every small improvement. It's a real mind and confidence strengthener.

I remember vividly making and finishing an omelette and texting my wife at work (with a before picture of a two egg omelette and an after picture of an empty plate) to let her know how pleased I was to have eaten a meal for the first time in weeks!

A little advice from someone who has recently been though this: As soon as you can manage it:

Quakers Protien ( microwavable) porridge with sliced banana and runny honey for breakfast. Followed by a Fotisip drink

Soup with plain white bread for lunch, and maybe an éclair or similar cream cake. Followed by a Fortisip drink

Fish pie, spaghetti, or ravioli for dinner. Followed by a Fortisip drink.

Best advise is to celebrate and share with loved ones each and evey "high" as you go (as little as eating your first custard pot, your first fried egg, or eating your first shepherd's pie), as each one indicates you are getting better and better!

Hang in there Floss.

MickyC   x

Hi Floss.

I'm starting treatment mon 22nd. PEG being fitted tues 23rd.

I'm guessing you're at week 13(?) 7 weeks after block of treatment.

That will take me up to New year week.

I've just had wisdom teeth removed so I'm getting a teensy insight into what's to follow.

Hopefully you're able to see the light at the end with maybe a sneaky Christmas treat.

Becky x

T4 N1 M0 HPV+

Hi Becky.   Yes I am.  Although it feels alot longer! I found the treatment weeks went quite quickly though. I hope all goes well for you.  Do everything your told, because it benefits you further along in treatment. Thank you for your message x

Thank you. I will definitely do that! 

thank you.

x

Hi Floss.  Congratulations on finishing the treatment, that is super difficult! This phase is tough. The phlegm production is just awful.  To combat the phlegm, I tried my best to stay super hydrated (despite the pain with swallowing), used a baking soda/salt water solution to gargle several times a day (like 10x a day), used a humidifier; however, it was really only somewhat manageable in the day to day.  I did ask the oncologist about any medicine to combat this, I was prescribed something (I believe it's primarily used to combat COPD), but I can't remember the name.  I ended up not using it, and just battled through. It went on for many many weeks for me, but I think it varies by person.  And then, one day, it was just gone. I was soooo thankful! Please keep reaching out here if you have other questions, someone will always respond and offer support! It has been a lifesaver for me. I did not have a RIG but eating was difficult for me all throughout. I did my best. Please hang in there, it does get better! Hope you have a good day and please take care ~Tara