It was the beggining of a great year, the birds were singing, I was full of life, I even saw my docor (V.A.) andI was given a clean bill of health. I carried on with school, friends, life..nothing could have prepared me foryhe E.R. Doctor to ask me..what the heck? why did you wait ao long? ITS CANCER!!mI said with a straight face...I was seeing the V. A. clnic here in town..E.R. dctpr jsut rolled his eyes and said "oh". Then he told me what kind of cancer it was..oh HPV..really. Well,to say I was scared ...well I wasn'r. I was more mad t the V.A. doc tht misdiagnosed it for a yer even when I pointed out that I had a lymph node that was swollen also. It was only apea size at tht time. When I finally got to have it biopsied..it was about a half dollar size.
So I hd the biopsy, NOT the lymph node tho, they ignored it until I strted saying "HEY, thhis lump is getting larger very quickly, it probably has soemthing to do with the cervical cancer, um...they ignored it unyil 4 months later when , now, the left AND right side [pelvic lymph nodes were so large they couldnt ignore them. Having to have bodyparts removed becasue of someones (a doctor no less) incompitance, to me is very very angering....ANYWAY, long story short, I had to have female parts removed, when I first pointed it out to them it coud have been easy as a little skin removal, but NO, they had to wait until I was in constnt state of anxiety, casue the dotors were not doing ANYTHING..even after the diagnoses..Ok Im rambling...this isnt coming out how I was trying to say.I have surgery on March 18th to remove the nodes that re infected. AND THEY are...
Anyway, what I wanted to really say is omgosh, the chemo, I thought I was going to die!! I have never been thru anyhting tht hard on me. I was premie, first three years of me life was in and out of a childrens hospital, then brain tumpor they had to remove, astro cytoma, then 4 back surgeries, fusion and stuff( scoliosis) I thought this would be no problem. Doctors dont seem to care, they tried to talk me into doing the 4th chemo before the surgery, I told them NO! it got to where my heart was beaiting out of my chest,it would take me3=5 minutes of catching my breath, I was so so so weak, AND my left arm started hurting ll the time from shoulder to elbow, I never felt that close to physically not being able to make it. I would like o tell anyone going thru chemo...ITS YOUR CALL how you feel after the 3rd round...EVERYONE I talked to that said they know soemone that died "from" cancer, didnt..they died from the 4th chemo treatmant..my stepfather did. PLEASE if you know someone right now that is going thru chemo...the bad kind, 3 days in hospital and 14 days recovery, let them know the first 2 arent so bad, its the 3rd one that should tell you STOP, until you , not your doctor, feels they are BACK to feeing strong enough, not throwing up constantly, able to walk more than a block without half dyng before getting there. I still have to have my lymph nodes in pelvic area removed, they ARE cancerous.Hopefully the Chemo killed the cells that were, nodes still have to b removed, they are broken beyong repair at this point.
Thing is dont let the diagnosis be a death sentence to you , what I mean is dont fret about "it", keep your head on straight, focused, having a good attitude will take you physically farther then you could imagine, Dont let those around you see you fall fom this. A good mental attitude will help ensure that you can still laugh when you want to cry, will help you be able to research and take the bad with the good. DO NOT think cancer is a death sentence my friend told me, she jsut finished chemo and has a clean bill of health now, you will feel like you want to die on days, but they will pass, dont fret about the things you didnt accomplish, your still breathing, dont think about those things in lie your should have done, poeple you wish you would have spent more time with, etc...I wanted t jsut crawl in bed and pull the blankets up and never come out of my little self made depression, my pity party, my boo hoo poor me, me anger, my confusion, overthinking things didnt help. you know what tho...I excepted it...Went straight from denial to exceptance..you know the 5 stages of greif, couldnt do anything about what already had happened...I have this filosophy...you cant change it, ie death, so why worry about it. You cant pick the how or when...walking out to empty the trash, freak accident, going to the store and your go by an airport, plabe crashes into the store your walking into, Maybe its the cancer making me deny things I shouldnt, but Ill be damned if I let the treatmant kill me!! I dont have a family, no kids no hubby, I dont have a carreer, I dont have any reason to even care if I die now or tomorrow, BUT I actually do, I have no clue about whats going tp ha[[en in the next 5 minutes let alone day, I do not know who I will meet, who I might save with my knowledge of first aide, I might run into the love of my life, nobody knows, I want to know what love feels like before I die, I want do not want to go before I made a differance to someone. Im mad that an incompetent doctor gave me this sentence of hell fo a time, maybe thats it, no thats not it..........I may not have much to live for right now, I mean material way, but ......
Hello Im Addie, new to here. Thank you for letting me rant and say nothing at all while saying to much.
Hi and a very warm welcome to the online community
I'm sorry to hear how much you've gone through in the last twelve months but you sound like a very determined person who is not going to let cancer define you.
Thanks for taking the time to tell us all about your journey as well as to give hope to others who are dealing with this type of cancer.
x
Thank you for your detailed cancer story, Addie. I have just been diagnosed with squamous cell carcinoma of the left neck lymph node, HPV positive. My primary cancer site is still unknown. I appeciate hearing about your chemo experience, as that is what is causing me the most anxiety, that plus not knowing where the primary cancer site is. Did you have radiation? I hope you are feeling better now. I agree with you that trying to keep a positive attitude is essential, but I know it'll be very difficult to do.
Hi Annette65, you have the exact same diagnosis as me! SCC of left neck lymph node, HPV 16 positive with Unknown Primary! I was diagnosed in June last year and started my treatment in July. I was told that this type of cancer is curable and HPV Positive reacts very well to radiotherapy. i was also told that it’s possible the Unknown Primary might have been so tiny it was absorbed by my body or that my body’s immune system might have dealt with it. I was received 30 rounds of radiotherapy (5 days a week for 6 weeks), and 2 sessions of chemotherapy, and finished my treatment in August. Please don’t get alarmed about the treatment, the radiotherapy is completely painless and so was the chemotherapy, although there were side effects and some weren’t pleasant but they were not painful and didn’t last too long, however there are long term side effects but these are quite manageable. I had my 12 week post treatment PET scan in November and the area treated was clear, Having an Unknown Primary though is always at the back of my mind but I have faith that my own body will tell me if some isn't quite right plus the reassurance that the NHS medical team will be seeing me every couple of months for the next 4 and a half years after which I hope to hear the words “Carol you are cured!”. I live in Bedford and received my chemo/radiotherapy at Mount Vernon Cancer Centre in Hertfordshire. If I can help you through your journey in any way Annette65 especially as we have the same diagnosis please ask. I have also joined the Head and Neck Group as that is what our cancer comes under, but I also joined the Unknown Primary Group although it tends to be not too many recent posts on there. Feel free to private message me if you want.
Best wishes
Carol x
Thank you so much for your support, Carol! It's such a scary time between first diagnosis and treatment - so much waiting for appointments, tests, etc., and so much worry about the unknowns. I'm still waiting for my first appointment with an oncologist and hope to hear from them this week. I'll go check out the head and neck cancer group you mentioned. I'm so happy to hear that your treatment was fairly painless. I'm hoping for a similar experience! I live in SE Washington State, USA, and will likely be receiving my care at Providence St Mary Regional Cancer Center in Walla Walla. Wishing you well on your road to complete recovery ~~ Annette
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