Home > Collective Diary > Feeling alone and in a void
Robyn G. on March 5, 2018
I was Diagnosed with:
Type and Description of Treatments:
Tonsil (Head & Neck) cancer. After 6 months of 4 Emergency room visits (from Feb - August 2012) complaining of sore throats, finally an ER Doctor took pity on me and scheduled a catscan where the findings were a mass on my Tonsil and side of neck under the left ear. Diagnosed in the fall of 2012 with Tonsil cancer, stage IV. Admitted to Sutter Hospital in Sacramento in Dec 10,2012. Spent 8 weeks there, 7 weeks of radiation (5 days a wk), 2 regiments of chemo. Had a feeding tube inserted (had that for 8 months) and a PIct line inserted (removed shortly there after due to blood clot). Was released from hospital in late Jan 2013. Spent a week in Carmichael, CA nursing home, self release and then moved to Green Valley, AZ to live with my mother & fiance for healing. While in AZ, underwent additional chemo, beginning in the early fall of 2013 (yr & a half of 4 types of chemo). In Nov of 2015, my Oncologist (Dr. Bruce Porterfield) stated that the chemo was not effective and to prepare. A month later, in Dec 2015, returning for a visit to the oncologist, then stated after tests results that I was in remission. I Nov 2016, catscan results were skeptical and I went o a Pulmonary Dr for more testing and another biopsy . In April 2017, I received No Evidence of Cancer.
How do you feel today?
I feel pretty good and healthy. Still dealing with side effects, ear pain, have half my hearing and poor eye sight. In early fall of 2016, I went thru 2 cataract surgeries (both eyes, including lenses and 6 months later 2 laser procedures (both eyes). I no longer have chest pain and have weened myself off of Morphine, while still on Hydrocodone for ear pain. I have been on a blood thinner (Warfarin for over 5 years now), which still is an adjustment. I had a one-on-one and took her class with a dietitian due to Cholesterol, blood thinner and borderline diabetes to aid in a healthy diet. My main health point are my teeth. I've lost the majority of my bottom teeth due to treatment. I will need 20 some surgical extractions and then dentures. I stick to soft food and many smoothies. I walk and do low moderate exercising, stretching, dancing, and meditation.
Since the diagnosis, what has changed in your life?
Eating habits for sure. Stick mostly to soft foods. My sleeping habits are good and not good. I take Lorazepam at night for anxiety and to help me sleep. Sometimes I take a Benedryl and or Melatonin ... not at same time. My memory is not the greatest. I continue to read and research, as I'm a writer/Author.
What is going well for you right now?
I am staying with my daughter in Concord, Ca. Although she is very busy with a job location change (commutes
to Sacramento - 13 hour day), on weekends she gives me time). I have a small bedroom and my own bath. Her and her boyfriend are not charging me rent, allowing me to get caught up on all the moves and to save money for dental procedures. I live close to shopping and am in the foothills.
What is not going well for you right now?
Moved out of Green Valley, AZ (where I was with my mother/fiance for treatment and healing 2013-2017) and was going to Las Vegas, to lower my expenses (rent a room from a friend, waiting to see if Fiance wanted to get an apartment there or separate) to work on my teeth issues. My friend decided that she didn't want roommates (I arrived to Vegas in the beginning of and left 2 weeks later all in Nov 2017), so I headed back to California with my fiance. He currently is staying in Diamond Springs, CA with family. We have not been able to find an apartment or small house to rent due to small credit issues. He is a plumber and works in Sacramento/Lake Tahoe areas. He too is gone long hours from where he lives due to commute. I see him every other weekend. I do not have any friends here in Concord, most of mine are in the Sacramento area. I am very much alone ... except my pets (which are illegal here in CA to own). I feel pressure for when my daughter lease ends in April this year. If she cannot get a place on her own, her boyfriend will co-sign for her ... that does not include me if I were in need. So not knowing where I'm going to be living (with boyfriend) or if I can even stay in CA cuz of my pets. I may have to give them up, but not sure if I want to do that ... then another move might be in the near future. My pets were there during my treatment and healin.
What has been the most challenging thing about having cancer?
Dealing mostly I'd say with the thought of death. I know most of us think of it at some time in our lives. It has dissipated with time. My mother died in June 2016 of cancer and my father followed 8 months later, also from cancer. It has been quite scary for me but realize you can't live in fear ... I am positive (try to be) and optimistic. Most people that aided me in volunteer rides and so forth have always said about my great attitude. From my mothers death to my fathers, I lost a total of 4 people with in 8 months, still in mourning I guess. So my emotions seem to way more on me then in the past. I feel for the time being that I'm in a bit of a void.
When difficulties overwhelm you, where do you go for support?
I have a few friends to call for support. I don't feel I can obtain support from my daughter and or boyfriend, mostly due to their lack of time. I have siblings, but none that can be supportive. I don't know who to call or where to get help ... I am on the internet daily but am at a loss where to seek.
How have your long-term goals or life goals changed since diagnosis?
Long term goals were: I have been writing since I was 14, published short stories/poetry into anthologies in the 1990's and in 2006 self published my 1st book. Althou not the greatest publishing experience. I want to publish more. At times I feel like giving up on writing, concentrate more on not feeling alone ... job ... roof over my head. Being on disability really makes it quite hard financially. So I go with short term goals ... taking things day-to-day ... placing a roof over my head so that I can look for work, go off of disability, work on dental issues, possibly another car down the road.
What is your work arrangement right now? What are your hours?
Currently, am on disability
Since the diagnosis, what has changed in your work life?
Have not been back to work yet
What has helped you continue to work the most?
Not back to work yet
What advice do you have for others trying to work through treatment?
Since I'm not there yet I would just say take it day-to-day.
How have you dealt with any side effects of treatment?
Side effects can be real rough. I still have ear pain and wear ear muffs, especially when it is cold. My throat has closed more since treatment, hard to get food down. Chewing is problematic cuz I have one bottom tooth. I choke alot while trying to swallow. Many times while trying to drink liquid to get food down, the liquid comes up out of my nose. I've had vertigo from the beginning.
If "today's you" could give advice to "day-of-diagnosis you," what would you say?
Take it day-to-day ... breathe in/out, don't be as afraid, meditate more, keep your mind busy when there is strength,.