Hi Babie and welcome to Cancer Chat.

Thank you for sharing your story with us. I'm sure many of our members with the same diagnosis will understand the journey you have been on and will be comforted to know that they can talk to you if they have any questions.

If you want to chat to other members on any discussions you find on the forum just click on the pink 'reply' button on their post to say hello and share your advice :)

I wish you all the best with the rest of your recovery Babie and look forward to seeing you around the forum.

Kind regards, 

Steph, Cancer Chat Moderator

Dear Steph,

Thank for  your reply. Yes, I would be very willing to share whatever  I can regarding my experience and journey of healing. Though I can no longer talk but God is still giving me the ability to write and type as my means of communication to  everybody. God has been good to me and I know He is always  on my side. 

Since my last surgery on Dec.2016, I already caught 2 episodes of pneumonia. The first one when I went home to the Philipines last June and the second one was last November. Just last week a had a hard cough again and yesterday my doctor gave me a medicine that stop the coughing but the side effects is nausea and vomiting.

My problem when I cough is that  the trach on my neck will always be full of  bloody mocus which is so scary. Its all dirty and dead blood with black in color. Another problem is that when I cough the  liquid food I take through my pegtube comes out and makes me wet. Then the surface  around the pegtube becomes red and very itchy.

What I always do is to use a hot water in dressing, to stop the itching . While typing this reply , I have just finished dressing it  and I am still a little bit dizzy due to the effects of the cough medicine.

I hope there are others who can share with me about  their pegtube and trach. Thank you.

Hi, I am facing the removal of my tongue and voice box and concerned about quality of life afterwards.  Would you still have made the same decision.

Your such a brave lady, I ne’er thought cancer on the tongue,could cause so much damage. I am waiting to go to hospital as my doctor and dentist hav sed I need to go, I am so scared I live on my own with my dogs 3yrs ago I had surgery on my back I’ve been paralysed now this it sounds so awful what u hav had donei don’t think I’ll cope but u r so very brave 

Hi Babie, my sister has just been told she will need to have her voice box and tongue removed and reconstructive surgery.  She is sixty nine years old and until now very fit. She is of the opinion that if she does not get it then she will die soon anyway.  Were you in the same position.  it sounds as though the treatment is ongoing.  Are you still okay

Dover, I hope you are well.  Can I ask how you are now and if you went ahead with the surgery and think you made the right decision.  My family and me are so worried about my sister who has been told that she will require the same surgery (if she can go through it).  She is sixty nine and unless she has the surgery she will not have long to live.  We would appreciate anything you are willing to share with us and my sister re this surgery and your progress.

Hi Aggie

My heart goes out to you and your sister.

No, I did not go ahead with the surgery, it just seemed way too big an operation and I was not convinced about any quality of life afterwards.

I asked about other options, Radiotherapy or clinical trials, I didn't want them to give up on me.

I saw an oncologist who offered me 4 weeks of palliative radiotherapy which I accepted, my son also did some research and found something called proton beam therapy.  After another MRI which showed that the tumour had not grown we decided to go ahead with radiotherapy. When it was about to start my oncologist said she had been doing some research and wanted to offer me a higher dose, we went ahead and it finished 7 weeks ago.  It was horrible, mouth ulcers that bled, constant dribbling, unable to eat, touch and go at several points but I got through it.

Abbie, I had my check up yesterday and to my absolute shock, they said very matter of factly, "no sign of the cancer", I made her repeat this several times.

Obviously we are all different and so are our cancers, I am very early days and go back in 6 weeks, months before I can have an MRI due to severe swelling.

Ask the doctors and don't be afraid to keep asking.  I am also going to the Christie in Manchester to see if there is anything they can do for me.

I was very quickly told I was terminal and felt written off by the surgeon but my oncologist was a lot more positive.

Feel free to ask anything, much love to you, your sister and your family.  I got cross and angry and horrible, if your sister does please forgive her and carry on loving her.

Hugs xx Tracy

I am so glad you are ok now. Thank you for your reply. They appear to have also written my sister off if she does not get the surgery. We have not yet met the oncologist. We have meeting on Monday so  your experience gives me questions which I can put to them in the hope there is another way.  Good luck for the future and I would appreciate it if you could keep me updated with your progress.

Helen x

Hi

Was thinking of you all yesterday, I hope the appointment went well xx