How do you deal with pain, fatigue, isolation, and chores?
I have been unable to go out for fun, food, errands, etc. With all of that, I have put off exams, scans, blood tests, etc. Then, in my abode, chores, clothes, dishes, and bills stack up and up, so high. I do what I can, but the chronic illnesses that developed after the 1st rcc . . . slowed me down to a crawl. It wouldn't be that bad if I could go out to a movie, museum, or shopping center (for window shopping to save money) to get away from the troubles. Covid says NO!
Renal Cell and the surgeries kicked my behind and dragged me down the street, metaphorically. The pancreatic neurendocrine cancer came along to sit inside me and taunt me and say, "I'm going to stay with you for a bit so you will need to get constant scans to see what I'm doing to you." All of that plus pain, add in fatigue, slip in the covid lurking around the corner (neighbors were diagnosed with it), plus isolation, and finally stir in chores and I feel stressed to the max. Stress feeds the pain and fatigue. See where I'm going? What can a single person do?
What do any of you do in your self care routines?
Comments
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Have you talked to your oncologist about seeing a therapist who specializes in cancer patients? And also, can you get a referral to a medical social worker who can possibly arrange some assistance for you? I'm sorry you're going through so much.
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Thanks AliceB1950.
My oncologist for the pancreatic neuroendocrine cancer is approximately 400 miles away from where I live. The ones (not LCSWs) for the rccs - follow-ups (I'll be scanned over and over for what seems like 1000 years) are about 250 miles away. When in person, before c-19, I printed out a list of my problems and gave it to doctors and social workers available at most oncology and other visits. I went to the available counselors, but they could not help in my town. In my town, resources are limited or not available to me. However, I check at least once per month for new services. I have a lot of 800 numbers for my various chronic conditions as well. I call them or email them on a regular basis. This has been going on since 2003. I have been fighting for disability since 2005 (all the way to suing the SSA, pro se, since our state bar did not have any lawyers that wanted to help me). Then, the other two cancers happened. My town is about making do or doing without. That is what I have to deal with until my body gives out, or I lose what I currently have. So, I will keep asking until my voice goes away. I will keep looking until I can't anymore.
For now, I need a boost to my po' folks coping routines.
Kidney_Cancer_Kid
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Have you tried online counseling since your town has such limited resources?
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Hi AliceB1950
I have exhausted my sessions with Cancer Care, sessions over the phone. Our town's last two Dialog ACS support groups ended years ago and the current medical center support group is meeting in person in a tiny room. I stopped going when Covid hit. I have used the little chat box at ACS for information and warm chats. Beyond that, counseling costs $$$ and the insurance limits the scope of what is covered. I want to talk about my cancer, pain, stress, childhood issues all at once, and the insurance company wants to pay for one issue at a time. I have asked my primary care to refer me to online, but it is hard to get him to refer me to scan and blood tests. I'm going to continue to harass (sorry Freudian slip . . . I mean ask) my doctor until I get the referral. One issue at a time is better than no issues and stress on my own, right?
Thank you for communicating with me. I need to interact online more. Cancer loves isolation, since that type of stress helps the cancer to grow. We must continue to do things to help ourselves and hurt the cancer.
Do you have some hobbies, exercises, etc. that you do to help cope with this cancer mess?
Kidney_Caner_Kid
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Hi, I think with all of the Covid issues it has been really easy for me to isolate even more. I find help in watching comedy, the sillier the better. In the meantime we are here so you can chat at us if it helps!
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I forgot to add walking. - once the temps allow - always makes me feel better.
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Well, I don't have cancer anymore so I'm afraid I can't help you with that. I've had three different kinds plus several lighter-weight skin cancers so I do understand being in an odd situation cancer-wise. I've never found a forum for people with more than one kind of cancer, which is kind of frustrating. Have you explored the other forums here, even though it would be one at a time and not all together? Have you contacted the American Cancer Society to see if they can assist you, or even have suggestions? I'm sorry you're stuck in such a limited place.
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Hi Deanie0916
With youtube, I love funny cat videos. I have looked at such videos daily. I used to look at America's Funniest Animals to get through the 1st cancer. Laughing strained the stitches, but did my spirit good. You made me think of the old shows I used to look at. I should look for I Love Lucy, the **** Van **** Show, and Living Single episodes. Then there are Mary Tyler Moore, Rhoda, What's Happening, Happy Days . . . They must be on youtube right?
You are helping, thanks!
Kidney_Cancer_Kid
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Congrats on pushing that evil cancer out of you system AliceB1950!
I am happy for you. I pray that cancer stays away from you. Thank you for staying on these forums to help those of us who still have to see oncologists.
If it is not too painful, what cancers did you defeat? I had rcc twice (I want that 'I had' to never become "I have" again.) When will the kidney cancer specialist say that I'm cured of the renal cell? I don't know. On to the new cancer . . .
Since I have Pancreatic Neuroendocrine Cancer, I just posted on the Pancreatic Cancer. I also sent a message to the CSN staff for suggestions. I left a phone message with the ACS phone representative (I forget what they are called), and she will have a nurse call me back.
Feeling better,
Kidney_Cancer_Kid
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I didn't defeat anything. I had endometrial cancer, for which I had a thorough hysterectomy. I had breast cancer, for which I had a lumpectomy and six weeks of radiation. I had kidney cancer, and had a full left nephrectomy between the lumpectomy and radiation. Oh, and I had MOHS surgery that rearranged almost half my face for a nasty oozing basal cell barely cancer. I showed up for all of those and someone did the surgery or treatment. I've been lucky to have low stage cancers that could be treated easily.
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AliceB1950
You are a true warrior!
When I think about my own cancers and all that others have gone through and are going through, it makes me so mad that I feel my blood pressure going through the roof. I just feel rage and frustration, but so helplessness and weakness. There is just so much pain going around . . . I want to know why. With all that cancer takes from our bodies and souls . . . I want to know why. When the answers don't come, I feel like screaming until my throat is raw. I'll have to use extra lavender essential oil. I can't go down the rage-frustration-. . . path. I'm going to load my funny cat videos right now.
Kidney_Cancer_Kid
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No. I am not a warrior or a fighter or any of those macho terms. Sorry, but I really dislike that term for anyone like myself who has had early stage cancers fixed by surgery. Like I said before, I just showed up and someone fixed it. My hip replacement took a lot more effort on my part. I'll assign the fighter label to those people on chemo or immunotherapy regimens that are keeping them alive.
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Congrats on pushing that evil cancer out of you system AliceB1950!
I am happy for you. I pray that cancer stays away from you. Thank you for staying on these forums to help those of us who still have to see oncologists.
If it is not too painful, what cancers did you defeat? I had rcc twice (I want that 'I had' to never become "I have" again.) When will the kidney cancer specialist say that I'm cured of the renal cell? I don't know. On to the new cancer . . .
Since I have Pancreatic Neuroendocrine Cancer, I just posted on the Pancreatic Cancer. I also sent a message to the CSN staff for suggestions. I left a phone message with the ACS phone representative (I forget what they are called), and she will have a nurse call me back.
Feeling better,
Kidney_Cancer_Kid
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How you doing I know your struggling right now but don’t give up you can fight this thing don’t let it beat you your stronger then you think I’m stage 3 and I gave up at first then decided I wasn’t going to let this cancer win if you need to talk just reach out your not alone in this battle there is all of us just post a comment we will answer you did the nurse call you back I just don’t. Want you to give up
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AliceB1950
I am a fighter/warrior/survivor. We have to pick the labels that we are comfortable with and reject the ones that don't fit. I tend to use the word client instead of the word patient because of the expense of going to medical facilities. No money/insurance = No care. ER staff members treat you differently depending upon perceived ability to pay, from my uninsured and under-insured experiences.
Why those terms - I have to fight to get adequate care, not good care, but adequate. I have to battle to get doctors to listen to me. They ignore me and my concerns, misplace my medical paperwork/results, and mistreat me (i.e. after the 2nd cancer surgery, the doctor did not order any pain medicine while I was in the hospital and the pain was tremendous.). Every single time I go to certain doctors' offices, there are battles, thus I use "fighter" and "warrior." I didn't even mention the doctors calling me "sweetie," "honey," and "dear." Such terms are too familiar/dismissive and are not professional to me. These struggles are from my visits to medical centers from Texas up to New York City. Those battles make me gladly use those terms.
Kidney_Cancer_Kid
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Hi Mmoses25
I don't give up. The initial rcc started in 2003. I keep doing what I can to continue. I love life. I just hate cancer!!!!! I tend to dive into others' problems, semi-drown, and carry the stress until I need to say, "OK kid, engage in self care. NOW!"
Currently, the pancreatic neuroendocrine one is the tormentor. I keep developing masses in different areas of my body to be monitored. Through today, only three have been called cancer, after the scans, labs, and biopsies. However, the cancer struggles of friends and family and others I have met through the American Cancer Society and visits to many clinics/hospitals . . . that wears your soul down. I haven't given up. I just feel the enormous scope of all of the people hurting. I had to give up the volunteer jobs that I hoped helped survivors like me. My body has taken too many hits and ailments to do what I used to do, so I feel like my role as helper has vanished.
I'm sorry that I made it seem that I was given up.
Kidney_Cancer_Kid
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