BridgetO
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Posts posted by BridgetO
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Another update from CancerLand. My wife is doing great. She's healed well from surgery and is now into chemo. Her hair is beginning to fall out and she's planning to get a buzz-cut tomorrow. A resource you may not know about: Any Great Clips salon will give a free buzz-cut to anyone whose hair is falling out from chemo.
My friend with myelofibrosis is feeling more hopeful--she's on some new meds to help keep her red blood cells up. However, she tripped over one of her granddaughter's toys in the dark and now has a dreadful looking black eye.
My other friend who's in hospice is getting good support from her hospice providers and is fairly comfortable. She can no longer cook and her husband, who is near 90 and an incredibly sweet man is having a hard time dealing with that and everything else. She now has a MealTrain, and I've offered to help them sign up for Meals on Wheels.
Unfortunately, I've had to cut contact with my former co-worker, the Hamburger Helper person, because his issues exceeded my bandwidth at this time. He really wanted to get out of the nursing home, although he couldn't care for himself. He didn't want help getting a case manager or social worker involved, but rather wanted help getting his cash out of the bank, I think so he could plot an "escape."
And, as for me, I was hospitalized earlier this month for a small-bowel obstruction. I had a Stage 3 gynecologic cancer diagnosed in 2011 and I'm grateful to be NED., but I've had a bunch of late-occurring side effects from the aggressive treatment that saved my life. The most recent is these small-bowel obstructions that started just before the pandemic, apparently from adhesions and strictures caused by the surgery and radiation. Treatment included a naso-gastric tube hooked up to suction to relieve pressure by removing by the "upper route", the contents that can't escape via the "lower route" . I tell you, it's worse than a chest tube! But I've recovered from the obstruction and the tube. I'm scheduled for an MRI to see what my digestive system looks like when it's not in acute distress. I'm also on a restricted diet and will be seeing a nutritionist to fine-tune it. Ahh, cancer- the gift that keeps on giving.
I'm taking a couple of months off from work to deal with all of the above. And, by the way, the kitty is fine!
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Wow, BryJ, that's quite an adventure you've had! Seems like the nurse pulled the tube prematurely. I was sent home the day after my VATS lobectomy with the dreaded chest tube in place, connected to a one way valve and a bag. They said it needed to stay in until air stopped coming out. This took about 10 days. It was kind of a drag but nothing like what you went through.
I'm glad to hear you're cancer free and I hope you have no more adventures in leak-land.
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Hi Karen and welcome. I'm sorry to hear what you're going through. My lung cancer was early stage and "garden variety", so the treatment was pretty standard. However, earlier I had a gynecologic cancer that was Stage 3 (large and spread to regional lymph nodes). It was aggressive and very rare type that had no published studies about it. My medical oncologist was inclined to treat it as "garden variety" since she had no evidence of other options. I chose to get a second opinion and sought out a doctor who was considered the "go to" person for rare gynecologic cancers. She had some experience treating women with this cancer and made some recommendations for further /more aggressive treatment, which my med onc was willing to try due to my "dire prognosis". It worked, I guess, since this was 12 year ago and I'm here today with no evidence of disease.
So, if you can find a doc that has some experience with your specific type of cancer, a second opinion could be a good idea. I found my expert by asking a neighbor who was in a different department at our local teaching hospital to see if he could identify someone for me, and he did.
All my best,
Bridget O
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Hi Beth and welcome. Lou's information and advice is excellent. I just want to add something in answer to your question about the PET scan. Ordering a PET scan means that the doctor is suspicious that what the CT shows could be cancer. A PET scan shows areas in the body where there is high metabolic activity. Since cancer cells usually grow faster than normal cells, cancer will normally "light up" on a PET scan. If the suspicious areas in the lungs 'light up" it definitely increases the likelihood of cancer, though, as Lou says, only a biopsy is definitive. If the cancer has spread to other parts of the body, those would likely register, too. The higher the numbers on the PET, the higher the likelihood of cancer.
Some things to know, though: sometimes other things like infections can also register on the PET, and sometimes cancers don't. My adenocarcinoma didn't show up there because it was small and slow growing , so not enough metabolic activity to register. Even though the PET isn't definitive, it does give the doctors information about whether to proceed with biopsy or to look for other causes for the abnormalities on the CT and Xray.
If you let us know when your grandma has more test results, and what questions you have, we can probably give you more information. Let us know how we can support you.That's what we're here for!
Bridget O
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Sounds promising, Ken! Did you get your cheeseburger yet?
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Hi Sarah, Sometimes surgeries are done on stage 3 lung cancers but usually after the tumor has been shrunk by chemo. I do agree with Tom and Karen about getting a radiologist consult and also other opinions .
Two other things: If you decide to take time off to care for your mom after surgery, 3 to 4 months might not be necessary. I had a lobectomy and lymph node removal by VATS (video assisted thoracic surgery) for a stage 1 lung adenocarcinoma at age 71 and my recovery was pretty fast. I was released from the hospital the day after surgery (with a chest tube still in) and was taking short walks outside the next day. I could have taken care of myself after 4 or 5 days with two exceptions :needing help changing dressings on my chest tube site until the tube came out in 10 days and being unable to lift anything heavy (over 15 pounds, I think.) Of course I didn't have the anesthesia issue your mom has had. Nor did I have metastases in my mediastinal nodes, but 27 of them were removed and tested. But your mom's recovery might be shorter than you expect.
I especially agree with Karen about seeking some advice or help for yourself about whether taking the extended time off work to be sole caregiver for your mom is in your, or her, best interests. If your mom has surgery and needs long term caregiving, a social worker could possibly help your mom (and you) figure out other options.
I had some issues with my own mom over caregiving, so I know it can be hard to set limits. I, too, am an only child. I lived at a distance (several hours by air) from her, and there were no family members in her area that would provide much besides brief visits. My mom was a survivor of two advanced cancers, but the precipitating issue was that she broke her hip. I went down to be caregiver, or as I preferred to say, to get her back on her feet. Fortunately I had a lot of sick leave accrued at my job and my employer allowed me to use it for Family Medical Leave. So I took 12 weeks off. In the first several , it looked unclear that she was wanting to get back on her feet. She resisted her physical therapy and wanted to be waited on instead of doing what she could for herself. I sympathized and knew she had pain, but I also knew that the prognosis was poor for older people with broken hips, especially if they didn't get on their feet quickly. So I 'got tough" and told her that if she wanted to get to be able to care for herself I was there for her, but if not, she could decide to go to a nursing home. She did get more active in her own recovery and was able to be alone, with some housekeeping help, when I left in 12 weeks. If I had not had the paid time off, I wouldn't have taken that much time. I couldn't have afforded to leave my job, and additionally, the 12 weeks of caregiving pushed me to my emotional limits.
All my best to you and your mom, and be sure to take care of yourself, too.
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Thanks to all for the good wishes! My wife is recovering well. She's up and about, taking short walks every day, and feeling much better since her drains were taken out yesterday. We had over a week of friends bringing us dinners. We had originally set up a Meal Train for two weeks, but told folks we were fine without it was great not having to cook much when I had more caregiving tasks. The food was both delicious and healthy and we still have some leftovers in the freezer. I'm grateful for all the support, both here at home and on this forum.
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Hello Elki. I'm sorry to hear about your situation. Do hold on to hope. Live now, because you never know what will come. Statistics about survival are based on large numbers of people, and you are a case of one. My father-in-law had a type of non-Hodgkins lymphoma and was told that noone had survived with it for more than 6 months. He got into a clinical trial and he lived about 20 years longer. Have you checked to see if there are any trials you might be eligible for? I don't know what d system is for that in England, but maybe someone on here does.
Also, could you get a second opinion? My lung cancer was Stage 1 and the treatment was pretty cut and dried. However, I had a prior gynecologic cancer, Stage 3 of a rare and aggressive type. My medical oncologist actually wrote in my chart that my prognosis was "dismal". I sought out a second opinion, and that doctor recommended some additional chemo. I belong to a health plan that only pays for treatment by in-group providers and I had to pay out-of-pocket for the second (out of group) opinion. My in-group onc agreed to follow the second opinion doctors recommendation. I am now 12 years out from that diagnosis and have no evidence of disease.
Hang in there, Elki . I hope for all the best for you.
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Update from cancerland. My wife had a mastectomy yesterday. She was discharged to home just a few hours after her surgery. So now I'm in the caregiver role full time. Yesterday was difficult, both for her and me. Neither of us got much sleep the night before, since we had to be at the hospital at 5:15 AM. We didn't know whether she was going to be released same day or not, so had to prepare for both situations and were up late.
When she was discharged, she was woozy and wobbly on her feet. I wasn't sure if I could help her up our front steps without us both ending up in a heap (my balance is none too good), so I called some friends for assistance and we all got in safely. She got less wobbly as the afternoon went on, but she was throwing up all day, despite anti-nausea meds. Fortunately the hospital gave us a supply of barf bags. By bedtime I was toast.
We both slept well and today is much better. No nausea, pain relieved by tylenol and ice. I'm being a more relaxed nurse. Friends are signed up to bring us food for the next several days, which is wonderful. Got homemade bread yesterday and the same lovely folks who helped me get my "patient" into the house yesterday are bringing ice cream today, because it's my birthday --78! Things are looking up.
Bridget O
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HiJohnny, I'm a survivor of three primary cancers. I don't have any living close family except my wife (and her mom and sisters). I've been open with people I know from the time I was being diagnosed. I've found that being matter of fact about it makes it easier for others. Cancer, especially lung cancer has a bad reputation. So far as it being an illness, and a hard one, that rep is justified. But there's also a stigma, for lung cancer especially. I think that talking about it helps demystify it and helps reduce the stigma.
My mother, who wasn't a role model for me in a lot of things, was a role model in sharing and being matter of fact about cancer--she had two of them. Her openness about this helped me be less fearful and anxious about my own cancers. It seems to me that illnesses that are hidden or secret can create more stress for the patient and for loved ones
I know that all families are not alike . I know someone who went to great lengths to hide her cancer from her mom, who was ill and fragile. She went so far as to get a hairstyle that could be easily duplicated and then got a wig that duplicated it to wear when her hair fell out from chemo. So I understand that all families are not alike and we each do what we need to do and who and when to tell what is a personal matter.
All the best to you in dealing with your cancer and your family.
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About monoclonal antibodies: Some types are used as targeted therapy for lung cancer. A medication name ending in "-mab" is a monoclonal antibody, for instance, pembrolizumab (Keytruda).
- LouT, Tom Galli and tgif i guess
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I hope magnesium gives some relief. I suggest you also try acupuncture. As you say, it's a crapshoot, but it's a fairly safe one. It might help but it probably won't hurt. I had acupuncture during my treatment for 3 different cancers. It helped some with side effects of treatment and it definitely helped with stress reduction and relaxation, which helped with pain. For some other things, it didn't work but I'm pretty sure it didn't cause me any harm.
Acupuncture works best if you can have it on a regular basis, two or three times a week. A single treatment might be helpful, but less likely.
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This is great to hear!
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Rikke, Hamburger Helper is a box of stuff (dry noodles, usually, and some dry sauce mix. )You saute and break up a pound of hamburger meat ("mince" I think you call it over there) drain off the fat , add water, milk, or whatever else it tells you on the box, and cook it until the noodles or whatever are done. It comes in various flavors-- my friend requested Stroganoff, and also asked me not to drain the fat (!). Some people like it. Not me, for sure!. It's a classic American family fast dinner.
Thanks Pam and Rikke for the kind words and prayers.
Probable chylothorax
in SURGERY
Posted
A low-fat cheeseburger?