It gets so frustrating when "looks" define peoples reaction to ones diagnosis ant treatment... I have gone through Chemotherapy, Radiation therapy and Immunnotherapy... Was involved in a clinical trial with 6 other patients for two and a half years and at the end i was the only one that survived.. I lost massive weight lost teeth and at one point was given a feeding tube to aid my nutrition since food was unable to be swallowed.. I "lost" many friends" and family because of how i looked and when the doctors told me i had less than 4 months to live i was alone.... still here today and refuse to let negativity take control of me.. It is hard at times when people , including Medical Professionals show little regard to you and your recovery because you" look good...I suffer from shortness of breath where some days i can't walk more than 50m.... When eating, mucous is always coming in my mouth which creates a bad eating experience... I always have dry mouth... I have a hard time bathing because i get dizzy and tired...I had a consultation with a Speech Pathologist last week and when i read her report it was disheartening....She wrote "no obvious shortness of breath ,no obvious dysphonia, speaking in full sentences fully intelligible" ...This is a reason i get the impression of people not taking me seriously and this is upsetting...I will continue to fight and do my research. .I read a lot of testimonies online and that gives me hope and encouragement
I think in the end we just have to get on with it. We can’t play the cancer card forever. Some people find it difficult to move on and that’s completely understandable. I found this article very helpful
www.workingwithcancer.co.uk/.../After-the-treatment-finishes-then-what.pdf
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Sorry one love. My reply wasn’t actually directed at you. It was just my way of saying nobody knows how we feel because we look ok and I don’t know how to address that short of trying to move on.
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Good evening Onelove66, i understand what you are going through and feeling, after 3 years of surgery and chemo/radio i was a completely different person, and like you lost a lot of "friends and some family. I still rely on my PEG and cannot speak due to the removal of my voice box. Sometimes it is hard to relay your feeeling to the proffesionals as they have not gone through the struggles or concerns we go through as patients. If you feel you are being ignored then please make an appointment with your consultant, dietitican, speech therapist etc all together so you can express your feelings and they will try and resolve or improve your care, i did this after i thought i was being neglected , the outcome was very good, I was also offered councilling which i took up as it helped me understand, accept and cope better. Well done for getting this far and going ahead with the trials as it is a brave thing to do especially as you mentioned the others not being so lucky. Please stay positive and determines as it sure helps as i have found . Wishing you all the very best,take care.
Chris x
Its sometimes not easy but its worth it !
