Cancer Stories, Radiotherapy

Radiation fibrosis syndrome: Late effects of Head and neck Cancers #219

So yeah…..Looks like I’ve got that too….yup seriously…

This is something I think I’ve known about for a couple of years but I’ve got enough going on!! I couldn’t be doing with anything else, but in recent months my speech has deteriorated I am unable to pronounce the ‘th’ sound and and a few others but I can’t remember what they are right now. Also my voice is super super super gravely I sound like I’ve got an intensely sore throat and tonsillitis, HAH found a positive !!! I don’t have a sore throat or tonsillitis.

So had an appointment with my speech and language therapists and she’s lovely she really really is and she’s so sweet and listens so well well but the news she had was not great.

It was within the first few minutes that she said she’d noticed the deterioration in my voice quality and smoothness of my voice and also when I mentioned my mum in particular, wasnt always understanding me on the phone (which for some reason cuts deep) . She said she had noticed the same when she called me. She said it had become more difficult not just because of the gravelly voice but also the pronunciation. I think hearing that was so so hard because…you get cancer you treat cancer you should be better but radiotherapy damage can happen 20 and 30 and 40 years after the fact they are known universally as the long-term side effects of head and neck cancer.

Now I was probably told about this when I was having my treatment but all all I remember is Dr sideburns saying that it was radiotherapy that was needed and due to my comorbidities I was unable to have chemotherapy it would not be a good idea. It wasn’t something that at the time I even think I heard, I was a zombie – doing with my doctor told me to do to get rid of the cancer, because otherwise I would die. So that’s what we did we went through one of the worst times I’ve ever been through it was the hardest emotionally physically and mentally, and I genuinely have nightmares about it it often I remember being pinned to a table by a big white mask… having a bit between my teeth to force my mouth open while I had the treatment, I remember having thick mucus that was catching my throat and choking while pinned down and I couldn’t move!

The amazing staff were quick, they came in and then they would turn me on my side, but Jesus Christ it was so scary and it wasn’t just once it was a good 20 times. Another thought that was mentally very difficult was being in my pain and the burns and the mucositis (which is where the lining of the mouth just tears away) and knowing that the radiotherapy is causing your pain, yet, you have to go back again and again and again mentally that is so hard you want to give up every single day. (I may have over shared there but that’s nothing new lol)

Going back to my speech and language exercises to test my voice, and I showed her that if I try and force my tongue forward causing a slight stretch, which, is super important to stretch it but unfortunately if I do that, my jaw on the right side, slips out of its joint. She was able to palpate the asymmetry of my jaw and how it sits to the right. Funnily enough she wasnt keen on me dislocating it to show her🤷‍♀️🤷‍♀️🤷‍♀️🤦‍♀️

For the first time I told a medical professional about the immense amount of pain in my cheek jaw and neck and that with feeling down my right arm shoulder and how it goes down my arm all the way to my index finger, and thumb. And how it’s meant I struggle washing my hair or holding things at extension….and that it aches constantly. I admitted I’M STRUGGLING

She talked me through what radiation fibrosis was but from my understanding it is the muscle turning into scar tissue and gristle and it tightens and tightens and tightens.

A little video…

What is radiation fibrosis?

Radiation therapy for head and neck cancer exposes the normal  bone and soft tissues of the jaws, face, neck and throat to radiation which can result in tissue damage known as radiation fibrosis

All of the soft tissues within the field of radiation can be affected, including skin, connective tissue, muscles, nerves and blood vessels

The signs and symptoms of soft tissue injury resulting from radiation therapy is termed Radiation Fibrosis Syndrome (RFS)

American Head & Neck Society

I will say that she has suggested a local practioner who does something called myofascial release, its a special type of massage and it works inside and outside the mouth, the neck and more, Unfortunately its not NHS so we will have to self fund (which I’m not grumbling at) – I’m not complaining but I will have to wait till post Christmas, cause kids are expensive !! and so is being chronically unwell. anywho fingers crossed I get some relief from the muscle pain and the dull ache that never goes .. fingers crossed.

A test we do to check the mobility of the tongue, it’s a simple test… it’s to count our teeth. I start at the back left and see how far around we can get because the left side is my real tongue and the right side is flap. I used to be able to do all of the left side touch the back of he front two and then maybe 3 or 4 more towards the right side. I start determined to prove it’s all ok….one…two….three got to 3 teeth on the left………and that wastnt even from the starting point…it was midway. I couldn’t even touch the back of my front teeth let alone push my tongue through my front teeth to pronounce TH sounds. I was starting to feel panicked and yes for 0.001 of a second thought WHY ME….I mean fuck…..does it ever end.

I had a bloody good cry and love her she just let me, not that she could have stopped me. We discussed the muscle wastage on the right side of my neck and how, if my head fell back or if I was sitting up from laying flat, I had zero strength.

My neck: Radiation fibrosis syndrome
My neck: Radiation fibrosis syndrome
You can see the wastage on the right side and some of the spider veins….(its 20x worse than it appears on here) that said that’s of zero concern.
My neck: Radiation fibrosis syndrome
Looking at screen right side is radiotherapy side

It was just a bit of a shit appointment after all we went through to get rid of this bastard cancer where does it end? so I just have to keep jumping from diagnosis to diagnosis to diagnosis so I just say screw it I AM STRONG I wont be down for long.

I’m still smiling….. I’m still fighting…. every day every step.

Me and my best girl!
Me and my best girl… ❤❤❤❤❤

3 thoughts on “Radiation fibrosis syndrome: Late effects of Head and neck Cancers #219”

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