Well what a couple of weeks I’ve had. Woke up a couple of weeks ago on a Thursday morning and I was very sick, then my speech started to slur, and I felt awful. When I poked my tongue out it pointed to the right side and I couldn’t eat as my tongue felt like an alien in my head! Rushed to doctors then referred to hospital where I had a CT scan and was told it was a frontal migraine and to go home and rest. After the weekend there was no improvement so was admitted to my acute oncology ward in my hospital for further tests. After a CT scan with contrast die and a MRI scan which I had to be heavily sedated for being claustrophobic, and a whole week of waiting and wondering they finally found a very small met on the lower half of my skull pushing on my nerves which control my tongue. It is called Hypoglossal nerve palsy. I was put on Dexamethasone to control the swelling and sickness and sent home. Plan is to start 5 days of radiotherapy to my lower skull, starting this Monday.
The Consultant said my tongue may or may not go back to normal, it will take time and I am gradually getting used to it and managing to eat alright. Soft things like baked potatoes are my favourite. I am also about 80% deaf in the ear on the same side so once I have radiotherapy I am hoping it will help that too. It’s been frightening and I have had to fight severe negative thoughts which I am going to ask my doctor to help with on Monday. I know the side effects are tiredness and headaches and I am hoping the steroids will help wih any headaches I get. I just have to get on with things and not fall apart and to do this. I take it a day at a time now. I think that’s all you can do. I have a husband and family that need me and I am going to fight this all I can with all the strength I can muster.
Wish me luck xx
Hey Lucky Gal - you really are having a s–t time aren’t you! But the feeling I get as I read your post is that you face all your obstacles with a positive attitude and I’m sure you will continue to do so. lots of love and luck and hugs. Let us know how you are getting on x x x
Hi…haven’t got secondaries…but…sending all my support and HUGE hugs… I,m not too fond of the “positive attitude” thing but you seem to have courage in buckets…best of luck with it all…apple
Hey Lucky Gal
I like to think your name is you. After reading your post, C is even crappier than ever, but you sound like a real fighter and sound so positive too! You will get through this, don’t for one minute think you won’t, you said you have a family and they need you!
Please let us know how your getting on, I’m sending this post with lots of hugs and well wishes!
Toni
Xx
Hi Lucky Gal, I am sorry about this latest development for you. Just wanted to say have extensicve bone mets and am having radiotherapy soon on my face/jawline. I have an appoitment this Thursday for that dept but not sure when the radiotherapy takes place but have been told it may be a one off blast. Let me know how it goes for you. I really hope this treatment helps for both of us. Thinking about you. Val
Keep attacking Lucky Gal
I wish you all the good luck in the world. Hope you get the best results possible from the rads and any side effects can be dealt with by the docs. Thinking of you and your family…x
Hi Lucky Gal
So sorry you’ve had such an awful time over the last couple of weeks. Wishing you the very best of luck and hoping that the radiotherapy does its job.
Hi Lucky Gal
Best of luck to you love junieliz x
Hi Val
Best of luck to you too love junieliz x
Thanks for all your kind words of support. I had my first dose and am now sitting on my sofa feeling calm and hopeful. I don’t think it’s about having a positive attitude all the time as that is hard to maintain. I do believe in taking things a day at a time from now on in and hope for the best. Will keep updating as the experiences we face help each other and I need l your love and support xxx
Hi, hoping you feel the benefit of that radiotherapy very soon. It sounds like a very frightening experience to have
to take on board. Lots of love and strength to you and yours
Claire
Hi Licky Gal. Wishing you all the best for your new treatment. I don’t have secondaries but have just finished rads myself on Chest. Hoping the RAds zap it away xxx
Hi again Lucky_Gal, I agree with your thoughts on staying positive. I’m so glad number one of your rads is now done and dusted. May the following sessions be problem free and soon over. With Love…x
HI Lucky Girl,
Just wanted to wish you well for the next four days - hope they all go quick for you and you’re feeling the benefits of the radiotherapy.
Totally agree with the onc day at a time philosophy, thats how I cope and it works for me.
Take care & best wishes
Chris xx
Hey Lucky Girl so glad you have started your rads and wanted to wish you well for the remainder. I want to also apologise to any members who felt my original comment about having a positive attitude might have been inappropriate. I wasnt trying to patronise - I personally struggle every single day with my diagnosis, but remaining positive has helped me through thus far. Apologies to anyone who felt offended x x
Hey Mrs Mc - no need to apologise. its hard to stay positive all the time. Especially so when hit with bad news and scary treatments!
I had a hard time switching off to go to sleep last night and am sitting on the sofa like a zombie at the moment. Have my second rad at 4.15 today so am just resting and staying chilled. I get badly out of breath doing anything and fight to control it when I’ve sat down which is quite scary. I guess it’s all the stress my body is under. I will just potter about and take things easy. I was pleased that the radiotherapy staff were so kind and helpful to me yesterday, promising to monitor and care for me and for me not to worry too much. Such a help when you’re worried and low. 4 more to go!
Hi again Lucky_Gal, are you still on the steroids now you’ve started the rads? I wondered, if that’s the case, whether altering the dose would help you switch off and sleep? I have one Amitriptyline at night to help me sleep (have bone mets) and I’ve found it helpful.
Glad the staff are so caring and I hope it’s not been too uncomfortable for you. Counting down the numbers with you. Take Care.xx
Dear Lucky Gal,
Sorry to hear that the C moster attacked you. Glad you have treatment plan already and I REALLY hope that it will work nicely.
I second to take every day as it comes.
Lots of cyber love. Will be thinking of you
Valia
x
Hello Lucky Gal,
Glad to hear QA eventually got to the route of the problem and they’ve cracked on quickly with treatment. Thinking of you and wishing for good results.
Sarah.x