Hi guys ....new here thought i would see whats its like lol...No one in my house gets how im feeling and i understand that.
I am on my 5th week of radiotherepy out of 6 and waiting on my second chemo but my god i have never been so sick in my life lol plus other things but really just want to pack it all in coz ive had enough.
I am a big bloke who never looks on the negative side until now lol.I lost my mum to cancer 3 months ago.
I just wondered how anyone else felt during treatment eg eating drinking swallowing voice etc etc
Cheera
Hi Recy welcome to the community and the chemoradiation club.
Tell us a bit more about yourself, what's happening, then folk will come in advise you better
You are almost there so hang on...this week the next. If you are on radical Rt then they are aiming to cure you so stick with it....it's worth it.
I am nearly three years clear and I was in the same place you are, but I'm living well now
Are you getting enough food, for a start? Are you getting proper pain relief and are you on the right anti sickness medication. They tend to dole out the cheapest ones first but they don't suit everybody. I had a lot of nausea when I was in treatment and only just about managed with metoclopramide.
I have a blog linked below with a few pointers,
Hazel (Radioactive Raz) will be along soon and she has a very useful account of what happened and have a look at Mark's Diary here on the community. Just click on the link I've made in red.
You will get there...........
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hi Recy welcome to the club none of us wanted to join. I am 3 years 3 months post radiotherapy for tonsil cancer with several affected lymph nodes. I had chemo as well please tell your team tiday about your sickness there’s other anti sickness meds you can be given. Let’s us know a bit more ans we can try to help. You can’t beat first hand experience. My blogs below with links to other it might help
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hazel
Thank you for the reply,yeah they have changed my drugs various times and again today and all go for chem on thursday again.
I have just found it difficult to ask for help i have never been a person to take pills and potions,a stubborn auld git lol.I have always been active at work etc to be sitting doing nothing is mindnumbing and frustrating and its only been 10 weeks since my op.But i dont know what i am meant to feel pain wise is it normal or the dry mouth is the worse for me.
Prob going on here and maybe doesnt come out righr but thank you.
Recy300
.But i dont know what i am meant to feel pain wise is it normal or the dry mouth is the worse for me.
Bloody awful is standard
But if you take your painkillers regularly pain is easier to control than if you take them ad lib.
Dry mouth is normal too and will continue to get worse before it gets better. I think you have to write off the six weeks after treatment ends before you turn any corners
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Beesuit
Hey thanks for the reply,i am a fifty year old male from Glasgow who was diagnosed with secondary cancer in my lymph nodes and after an operation in the throat and scraping the tongue they couldnt find the primary at the start of October is has been a hard and fast ride while dealing with the loss of my mum with cancer in September which might explain some of the things i feel.
As i said i am a positive person but finding it hard going and feel as though im being weak to ask for help..should i be asking....should i feel like this...i have good and bad days......sometimes i want someone to say yeah you should feel/think like that......the staff at The Beatson are brilliant but i feel you just get told worse case this worse case that so kinda left in limbo.
Thank you
Recy300
Hi yes dry mouth is normal it’s the side effect that tends to last the longest . There are things you can try I still use 1/2 a xyimelt vat night buy online they help your mouth in the night. Sugar free chewing gum with xylitol. I use wrigleys blue tub one. Tablets best advise don’t wait until pain kicks in take it by rote. You need pain relief to get through the next weeks . You won’t become addicted to it when the time is right as long as you do a phased withdrawal. Keep in here we will help you as much as we can. Don’t be afraid to ask for pain relief it’s cancer snd the treatment is brutal but if u coujd do it anyone can.
Good luck with chemo.
Hazel
Hazel aka RadioactiveRaz
My blog is www.radioactiveraz.wordpress.com HPV 16+ tonsil cancer Now 6 years post treatment. 35 radiotherapy 2 chemo T2N2NM.Happily getting on with living always happy to help
2 videos I’ve been involved with raising awareness of HNC and HPV cancers
Hi Recy300
It might not seem like it at the moment but you are doing brilliantly. It is a tough ride and you did better than me. Half way through my radiotherapy I felt like throwing it in and discussed with my doctor and I didn’t even have chemo. He explained to me that it would mean that I had wasted 4 weeks for no benefit so I needed to hang in there. I took his advice although it was tough and now I am 2 years post my treatment and doing well.
I also went through feeling rather useless not having enough energy to get on with my life in the early days. It is hard when you are used to being an active person on the go all the time.
I had to learn to sit back and let my body heal but it wasn’t an easy lesson however you do get there and things improve day by day.
I am sorry to hear that you are also having to handle the sad passing of your mother. One thing is hard enough without the other.
Give yourself time as that is what it takes and then this experience will be far behind you and you will be getting on with your life again.
Best wishes for the rest of your treatment.
Lyn
Sophie66
I was really sick after my 2nd course of chemo
It was great though it meant another week in hospital where I was just wheeled along the corridors to have my radiotherapy rather than having to be driven the 30 miles there and 30 miles back every day.
There's always a positive
Hi Recy300 and welcome to the forum. You've come to the right place for mutual support and understanding!
People can react quite differently to the treatment. Some find certain side effects are worst for them than others.
Please speak to your team and tell them how you're feeling and if you're in pain. There are so many options available to make things a little bit easier from different types of painkillers to specific mouth washes to numb the mouth/throat if swallowing is painful. It is really important to take the painkillers regularly though as Dani pointed out.
I'm sure everything you're feeling is what some of us have also felt so don't think you're a one off or weak! No-one can really understand the type of pain and problems with taste/eating unless you've actually been through this treatment.
You're almost there now so stick with it.
All the best.
Linda x
Hi
I'm a newbie too (head and neck). About to finish my first week of radiotherapy. Until now, apart from some nausea from chemo, I have had no side effects yet. I am terrified of it. Won't lie. Like you, Ill have a second dose of chemo later on.
We can do this.
We have to. Think positive.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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