Radiotherapy: timeline of side effects

Hi I personally was ok with the ng tube  ut was simple to be put in a few moments discomfort. The peg I understand from others can cause discomfort for up,to a week .
If he’s refusing like you said it’s a difficult one ,I had a pump in a rucksack that enabled me to potter on and keep doing bits around the house. Many feed slowly overnight I fed during the day time.
 there’s no right or wrong way. Ok the ng tube is visible but that didn’t bother me. I also took it out myself  3 weeks into recovery with dieticians and nurses blessings as I was maintain weight and had started to swallow . He will also be given swallow exercises they need doing several times a day and I still do them even at 5 years I do them when in the car or pottering around. 
Hazel 

He was given the option of the PEG at his trust, but didn't like the sound of it. It's really helpful to know the NG tube is relatively easy to put in, and I can't believe you took it out yourself! 

Great tip about starting the swallowing exercises early, thank you!

I've had a look at your blog, really helpful, very much appreciated your honesty and openness - THANK YOU!

Isabel03 said:

I've had a look at your blog

Have a look at these. Just click on the names MarkEL and Petlamb 

The down side of the NG tube if you are being sick is that it you can vomit it out. I threw mine up twice.Once I had to go back for a replacement and the second time I just pulled it out of my nose and threw it in the bin. I think Hazel took her tube out with the nurses which was probably a safer bet

Hi Isabel

I wasn't very clear about PEG insertion.

PEG was in place 3 weeks prior to start of treatment. tender for about 5 days after procedure.

Peter

He has been offered the PEG tube before the treatment starts, just like you said Peter. It doesn't seem to be possible to have a PEG tube after the treatment starts, right? 

Yes it is possible and in extremis hospitals will do it but it must be unimaginably hard. A nasogastric tube is much easier 

I think the norm is for PEG to be inserted prior to starting treatment, I couldn't say with any certainty that it could be put in place after starting CRT....but it certainly made life easier for me as regards maintaining my weight ..bit of a nuisance...but  manageable.

Peter

So the tiredness isn't what effects his driving capability but the inflammation and swelling caused by the radiation and the body still trying to heal from the surgery limiting his neck movement to drive safely.  The tiredness begins almost right away or the next day...think of when you visit a beach and you layout in the sun all day, you just feel drained - that's exactly how it feels but 24/7.  I would say week 2 your relative should really be staying with someone....at the 3rd of the 7 weeks I had to do I had a complete breakdown and wanted to quit.  Then the pain was so unbearable not only is it difficult to eat but to talk as well - imagine the worst strep throat you've ever had x10000.  You don't even want to attempt to put something in your mouth because of the pain so most people end up with a feeding tube being placed.  My mother-in-law would have a schedule and once in awhile I treated myself to an iced coffee or smoothie which was amazing at the time.  I was also in college so I had purpose other than cancer to motivate me.  So it's best to have whatever he likes nearby...even if it's just a car ride or painting.  Not being able to talk even with liquid morphine and viscous lidocaine can give you some dark thoughts so it's best if he's not alone.

We were pretty well prepared and if not my MIL was quick to fix it.  But the best advice I can give is that even though it seems to get worse before it gets better....it does end but I think I was most upset that after treatment was completed, I thought the side effects would resolve in a couple of days but it actually takes about a month or so.  You learn to adjust your diet over time to actually enjoy food and keep a bottle of water on yourself at all times because dry mouth is a lifetime side effect.  And he will have to see a dentist for cleaning every 4 months instead of the typical every 6 months because the dry mouth overnight causes break down in the oral cavity and if it is not kept up with, alot of patients end up losing their teeth.  I completed my sx and treatment in 2008 and have been vigilant with my dental appointments and have never had an issue

Thank you for sharing your experience FLgirlhybridtongue, the analogies are very helpful. We have tried conveying this information to friends and family to gather support, but it's been really difficult. People have a particular view of radiotherapy being relatively easy, but that's because their experiences of RT (either directly or indirectly through people they know) have been in other parts of the body.

Head and neck RT certainly is a completely different kettle of fish. From what we've read, what people here have shared and from what our specialist nurse told us, 9 out of 10 people going through head and neck RT suffer severe side effects. So it's clearly a very rough treatment for the vast majority of people.

Still we're struggling to garner enough support right now. We'll be travelling for week 5 onwards, but would like to get help (someone to stay with him) from at least week 3. Maybe as the side effects become more evident, people will take head and neck RT more seriously...

Hi Isabel maybe share our blogs with your family them they can see and read real,life people going through head and neck cancer Ask them to think for a few moments that their mouth has been burnt maybe they’ve bitten their tongue and it hurt well ours feel 100 times worse that that at times and there’s no respite. Get them ti eat 4 cream crackers without any butter one after another without having a drink that’s how our mouths can feel constantly. P, if they e had a sore throat tell them to imagine they can’t drink to relieve it Yes other cancers have radiotherapy but our mouths and throats are vital to what we do every minute if the day we eat we breath we drink we talk even whike sleeping I learnt to sleep without having my mouth open which makes the dryness worse. Sorry if I’m ranting but u nice git told by a relation their friend  had radiotherapy for Breast cancer and didn’t affect their eating ummm eat with my mouth was my reply ! Not with my boobs, I’m not being disrespectful to any other cancer they are all bad .

hugs Hazel x.