About to start treatment for neck lymph node

Hi Tricky 59  I’m almost 6 years for tonsil cancer with 7 affected lymph nodes . Treatments hard I was 61 when I went through it. Take everythjng ind day at a time don’t look too far in advance. If you have a peg fitted use it don’t struggle I had n g tube fitted week 3 my lifesaver. I was drinking orally 3 weeks after so your mouth and throat exercises. Don’t berate yourself if you’re in pain tell team they are first point of contact daily. Ask us on here we’re hspoy to help 

blog below might help 

Hazel x

Good luck - it ll be a challenge but you ll get through. At the time it seems to go on forever but now 6 months after treatment it’s long behind me. 
Get lots of rest and be kind to yourself. It can't be rushed - it’s not pleasant but think of the light at the end of the tunnel. 
The people on this forum are so kind and generous with their time - ask questions and you ll get great advice. 
First 3 weeks arent too bad but expect to feel tired and sleep loads after that until at least 4 weeks after you finish the treatment. One step forward 2 back some days but it will get better. 
All the best 
Rachel 
Chemo and radio 6 Weeks - ended 29th sept 2023 - tumour back of tongue. Back at work, eating ok. But still hoping for more improvement in time 

I'm now 9 weeks out of treatment for base of tongue.  6 weeks radiotherapy and 5 chemo, bilateral radiotherapy.  Nobody is lying when they say it is brutal but doable.  

Recovery will be very different and highly individualised for each of us. We all react quite differently to the treatment.

You will find that the ability to eat will slowly diminish over the 6 weeks.  Most will need some sort of feeding support by week 3.  I made it to the last day of treatment before I needed it, but it was a struggle.

At your stage I would be seriously thinking about how you are going to be supported in feeding.  I opted for a PEG, which is fitted before the problems arise.  Others will go for an NG Tube when things get too difficult.  Best to be prepared.

Also consider how you will get to and from treatment.  I was able to drive for the first 3 weeks or so.  After that I was on opioid painkillers which ruled out driving.

Depending on your chemo it could last anything from 1 to 4 hours.  I did not have any problems whilst the administered my chemo and the room was very comfortable.  Take something to keep you occupied.

Listen to your body and if you need to rest then take that rest.  You will be absolutely shattered.

From these general points ask any questions - none are too silly to ask.  Although there are lots of threads on the same subject try reading some of the more recent ones to see how people have coped and the solutions offered.

We don't bite!  Stay with us.

Hello Tricky59 

I’ll add my bit to everybody. I’m five years plus clear. That will feel a million miles for you so I hope somebody going through treatment chimes in for you. We are all different but there is commonality. The treatment is painful ( so don’t be brave, don’t struggle and tell your RT/ Chemo teams who are your liaison with oncology, if you need more pain relief. Most of us need tube feeding when we can’t swallow. I can’t say that for me it was gradual. One morning I was managing soft food but by the evening I was in so much discomfort it all came crashing down on a Friday and I had to have an NG tube placed three days later. 
Proper pain relief and pump feeding with a prescribed food replacement was a game changer. 
Recovery: first two weeks after treatment end is absolute pants! I slept. Gradually I came to life and by six weeks I was seeing the world again. By twelve I had turned a corner but it wasn’t till six months had passed that I could say I was well again. Improvements continue right to this day but most of them were in the first two years. 
Chemo can give you tinnitus and hearing loss which can be permanent so tell your chemo team if you get noise in your ears. 
If you have a stomach tube use it if you don’t be prepared to insist on a nasogastric if you need it 
Best of luck and I hope some of this helps. 

Hi there a few people on here that have for myself I just had the Radiotherapy. 

Thankyou for your reply very helpful I’m very nervous but at the same time I’m a alpha male strong and fit hopefully this will help but I know it will

be a rough ride 

Hi. My treatment ended 12th January this year. I had 6 cisplatin (?) and 30 radiation treatments. The chemo was very doable but long. A good 6 hours.  My bloods were taken on the day and I had to produce enough urine before they’d give it to me. I had tinnitus before I started treatment and it definitely affected my already rubbish hearing.  I now wear hearing aids 

I found the 2 weeks after treatment the worst. However, We’re all different. Your journey may be easier than others. 

The  peg tube was a game changer but I had a lot of pain after insertion. 4 days of pain where I could barely stand but it got easier afterwards. I heard it’s because my stomach muscles were very tight from exercise. If it’s not been suggested ask to have this done before you’re into treatment. I’d not have coped getting this at 4 weeks,

Get as much rest as you can,  drink a lot and move when you can. I exercised up to 5th week and then hit the couch for the last two.  Two weeks after treatment I restarted albeit gently. For me this was mentally important. It also helped my recovery 

Ask questions, everyone is so helpful.   I only discovered the forum a few weeks ago

Good luck and all the best 

DesRoss said:

I only discovered the forum a few weeks ago

It’s a really good job you did. Your posts have all been so helpful. Thanks for finding the time to be here. 

Hi Tricky59

I thought I'd drop a reply as my husband is just about to start his 25 session of radiotherapy for base of tongue, he's 10 weeks post surgery - his tumour was removed but the margin wasn't wide enough.. He's really apprehensive for the radiotherapy, more so than he was for surgery. For us the oncologist has said he doesn't think he will need a peg feed ... We will have a very low threshold for asking for one if he is struggling at all. 

All the best for your upcoming treatment, and I agree with the others that have answered on this thread, be kind to yourself, and get lots off rest, be sure to tell the medical team as soon as symptoms arise to get on top of them early. 

RonnyBubble said:

We will have a very low threshold for asking for one if he is struggling at all. 

Good. Don't let him struggle. Oncologists prescribe the radiation then don't see you till the end of treatment. They can't possibly know what it feels like no matter how many patients they have had