Starting chemo with no support. Advice?
Hello,
I start chemo next Wednesday 8th of Jan. I live alone and my family are not in this country. I also just moved to the South Bay so I don’t have friends here either.
any advice on how to go through this grueling period completely on my own ?
Also, I am considering cold capping ( using penguin) but I’d need someone to help switch the caps out. Any recommendations on where I could hire someone as a last resort?
The charge for the service from penguin is outrageous as I have read they charge $555 to have someone come assist with switching out the caps.
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hello,
This is an international site so could you please be more specific about South Bay so we can know where you are located. South Bay in the San Francisco Bay Area, perhaps?
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my apologies and thanks for calling my attention to that. San Jose , California
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Well howdy, neighbor! I also live in San Jose. What hospital/medical facility will you be getting your treatment at? Many centers have social workers who can help connect you with support as you go through tx. I personally have no experience with cold cappping but a social worker can probably steer you in the right direction. Let me know if there’s anything I might be able to help with.
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@exbrnxgrl oh wowww, hi Neigbor. My treatment is with Stanford health. Unfortunately they don’t have that much support with caregivers as regards to that.
I’m hoping im able to handle recovery on my own though0 -
Many large cities have home health agencies where you hire someone to accompany you to and/or pick you up from medical appointments. The cost depends on whether that person has medical certification (nursing assistant, LPN) or is a responsible person background checked by the agency. I live on the opposite side of the country but a local community college nursing assistant program has a list of students available to be hired for short term non-licensed help. As exbrnxgrl recommended, contact a hospital social worker who would know what is available in the area.
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Stanford was involved with piloting Dignicaps several years ago. Dignicaps provide scalp cooling but the equipment belongs to the hospital/treatment center and appear to be easier to use than the Penguin cold caps (I don’t think Dignicaps require a helper). Oddly, according to the Digncap’s site, Stanford does not offer them in Palo Alto but does offer them at some satellite locations such as Redwood City. I don’t know if the site is current but you might consider asking about that. I can’t paste URL’s on this site but check out dignicap.com , they may have more info on whether or not this is offered in Palo Alto. Again, let me know if you need a hand 😊
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Yes, they do offer dignicap in Redwood City and I considered that. Unfortunately the availability is very limited so it would push my treatment date forward which is a huge concern for me considering I have an aggressive cancer and have not started treatment since October when I found the lump. Any more delays just fuels my anxiety . Dignicaps are also cheaper and I’m thinking maybe penguin cap for the first one and then continue with dignicap if availability permits. People have said they lost most hair from first treatment
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Hi - I live alone and went through all of my initial chemo and radiation by myself. Thankfully, I am only a couple of miles from the medical center, so I was able to drive. It was very difficult and trying at times, but I did it. Later, I became stage 4, and at one point was in the ER, and a social worker there told me to always take another person with me to my appointments if it was at all possible. Long story short, I wound up asking an old childhood friend, who doesn't live too far away even now, as we are now average age of 70 and in another part of our geographic area. She also just retired, so has time. She's been coming to all appointments with me now for about a 18 months and it is a real lifesaver and game changer. Moral support, another pair of eyes and ears, and I swear everyone is on better behavior in this situation; doctor, patient, and friend. For some reason 3 is what you want in this situation and is not a crowd.
I used to work in social services so I would like to underscore Maggie's suggestion of a home health agency worker, if you can afford it. I've never heard of insurance covering it, but I even considered it for myself, if my friend wasn't going to be able to join me. Ask around for some of the better agencies in your area, and go with one that takes time to meet with and interview you ahead of time, so can draw from their best matches for you. They have people who can either pick you up and take you there and back home, or just meet you, and they can provide some moral support, companionship, and also be that other pair of eyes and ears, that can give you some piece of mind. It's not cheap though, so finances are an issue. Most agencies have at least a two hour minimum charge and sometimes 4. Even if you just chose to use someone like that occasionally, it could be a big help. I wish you lots of luck!
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I did 5 months of AC-T chemo. They scheduled me for very early in the morning, in the winter, so I didn't want to make anyone else drive me. I drove myself, sometimes through the snow. The first two months were the worst, but I survived it. My hair fell out after two weeks, but it started to grow back during the paclitaxel round. I bought a cute wig. I think what's more important than the cold cap is to ice your hands and feet to prevent peripheral neuropathy, depending on what kind of chemo you're having. That could have more permanent consequences. My best wishes for a tolerable and successful treatment.
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