Jan 2022 Latest : Radiotherapy started ! on left side of neck for NLP HL

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Hiya, 

in case it might be of interest, thought I'd post an update on how it's been going since my last radiotherapy treatment on the left side of the neck.

It's been 4 weeks since last treatment

Soreness in mouth, throat (inside of neck)  - This has now decreased, but not gone, and swallowing still a little uncomfortable.

Taste alterations

Frequently an odd taste the mouth, a bitter taste,  ( but then occasionally a sweet-like taste ),

And the taste of most foods seems to be diluted, and some foods just taste bland, like what I imagine eating cardboard would be like!

But I’m consciously making effort to eat small meals/snacks regularly through the day.

Oddly, ketchup is only thing that tastes exactly the same!

 

Dryness in mouth

This has stayed the same with newer symptoms in that by the evening it feels very dry, sticky, and saliva noticeably thicker, stringy, or lumpier. Constant feeling of saliva stuck in throat, hard to swallow down. Food sometimes feels stuck to left hand side of mouth.

Using toothpaste designed for sensitivity, and a non-alcohol mouthwash. At night use the dry-mouth mouthwash from the hospital. During day regularly sipping water and warm teas.

In the mornings gums feel sticky and gritty on the left-hand side.

 

Skin irritation effects

These really started to come through soon after the last treatment, and at 4 weeks since last treatment the skin is irritated, dry and looks noticeable. It looks like sunburn, with darker patches down the Lhs of neck, and there is hyper-pigmentation looking like large freckles on the neck and left side of jaw and chin.

 

Hair loss

This started happening towards end of treatment, from behind the ear, and now there is a noticeable patch of hair loss.

 

Fatigue

This continues, and has even felt worse on some days, which can feel frustrating. Feel tired all the time. Feel weak, everything feels like an effort, like walking or climbing the stairs. It can feel mentally tiring too, with feeling sleepy a lot, and resting and napping in the day doesn’t make it go away. But going with it and allowing myself to nap.

 

Neck ache - Neck feels achy on several days.

Appetite is up and down. Sometimes really not hungry, then other days able to manage small meals and snacks.

 

So the recovery continues, and trying to doing my best with daily walks when I can, eating well, and resting.  Mentally it’s tiring too, and some days feel down and anxious, feel a bit useless, and then other days much better.

 

But on the whole,  so glad the treatments have finished, and there are signs are improvements which hopefully will now continue at pace!   

Best wishes for good outcomes to everyone 

Previous posts  

Update  7 Dec 2021

Hiya,

Latest on my radiotherapy experience – last time I posted I’d had 4 radiotherapy  treatments on the side of my neck, each one approx. 2gy each.

 

These have continued, and … today was last one! ..yah!!

 

Looking back the last 3 and half weeks feel a lot longer. Getting to hospital and back, the waiting around and the treatment have become the focus of each day, and it’s like this is what a normal day is, but finally have got to the end of the schedule.

The treatment themselves are painless – lie on table, getting fitted with your mask, then try to relax and wait for treatment to complete, hearing whirring and beeps as the machine moves around you. The mask wearing became more tolerable, though never looked forward to it being fitted on and the loud click sounds of it being bolted down, but decided to see as a daily meeting with a friend offering a helping hand !

 

The radiographers were always very helpful, friendly and easy to talk with about how it was going.

 

It has become very tiring. The fatigue really became noticeable around half way through second week – it feels more than just tiredness, and can make you feel more down. But at least in winter not too bad if need to rest on the sofa a lot ! ha ha

 

The other effects started to be felt around half way through the second week too. The mouth has become very sore, dry, sticky, particularly on left and side. The gums feel gritty and sore, and most of tongue sore. The sore throat is really noticeable.  It feels raw painful most of time. Need to keep sipping cool water, and they’ve given me mouthwash to help, plus advised on taking paracetamol to help with the pain.

 

Also, a great excuse to eat bits of ice cream a lot, and chipped ice helps ! ha ha

 

Appetite not great, and they’ve given me Complan shakes, which help as at the moment chewing food uncomfortable and basically tiring.

 

The neck itself feels achy, and encouragingly I’ve noticed that the smaller lump seems to not be visible now!, and the larger lump much smaller with the area around it feeling tender.

The review nurse has said that the effects of the radiotherapy may continue getting worse over next couple of weeks or so before it all starts to feel like its improving.

 

I decided not to take my mask home, hope it wasn’t offended !  ha ha, but did get a pic of it  - what do think – make a good xmas card? Ha ha

 

Nov 2021

Hi,

this is just to post to say how it's been going so far with my radiotherapy treatments .

I've now had 4 treatments ( 2 Gy each), with the weekend gap.  And so far, relatively feeling OK!  Noticeable tiredness is the main effect I'm noticing, which started on third day, plus throat a little croaky.  Not sure if it will stay like this,  or start to get worse by third week - but just taking it one day at a time, and see what develops!

I'm trying to get on with my mask, but to be honest I do find mask a little irritating !  :-)  but I'm trying to see it as helping me!

Will let you know how it goes.

Take care.