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Mother recently diagnosed- need advice

rocki
Posts: 5
Joined: Nov 2004

My mother went to the hospital because her stomach was extremely swollen and extremely painful. They found that it was ascites and discovered adenocarcinoma. She has about a hundred doctor's appointments in the next week. They say they'll operate, but don't know when. We don't yet know what stage it is. I live far away and am scared. My mother is a single parent of a child with special needs and takes care of other children with special needs. She has very little money, just got health insurance, and has next to no support system. Her lifestyle isn't all that healthy. I really don't know what to expect over the next few days, weeks or years. I'm scared and want to help, but don't know when I'll be most needed. Is it likely that she'll be able to continue working at all through her treatment? What should I do (besides wait)? How should I expect her to feel physically over the next few months? I'm wondering if I should plan a long visit or a relocation. I know I need to wait and get more information, but I'm feeling helpless. Any advice or insight would be so helpfull. Thank you.

mymombblb
Posts: 2
Joined: Nov 2004

I really feel for you. I would suggest that you help your mom look into a second opinion at a hospital that is well known etc. It is better to do that prior to treatment as if you wait they may not be able to help as much. Does that make sense? I begged my mom to drive 2 hours away to get another opinion and she wouldn't do it. She just got done with chemo and it didn't help. Now we are taking that 2 hour drive and hopefully they have other treatments. The better, larger hospitals with cancer centers tend to have more clinical trials etc. I am sure it is hard to be far away. My sister lives in another state and she has come home for major appointments and sends my mom flowers every chemo day she had. I think my mom struggled more in the beginning because there was so much to absorb and she felt overwhelmed. Once she got into her treatments, she did ok. They can give medicine for nausea and typically she would be very tired about 2 days after chemo. I think it can depend on the type of chemo. She doesn't work and has other health issues. I would think for most you could continue working with maybe a few sick days here and there. Even if you could come home to go to a chemo with her for moral support. If you can't and think she needs more help, I would call a cancer center near her or american cancer society and ask for help for her. I know my mom doesn't like to ask. Maybe they have volunteers in her area that could help. I think you have to be an advocate for her as she is probably overwhelmed. My sisters and I have tried to be really proactive in helping my mom. Most importantly, I think you should be as positive and upbeat with her as you can be. also, if you call the american cancer society they will send you a nice packet of information on what to expect etc. I hope this helped you. It is a life altering experience and can bring you even closer to the things that really matter. Good Luck!!!

AuthorUnknown
Posts: 1564
Joined: May 2006

I feel as badly for the family as for the cancer victim since I know how helpless you all feel. I have my 2nd recurrence with ovarian cancer & my 29 year old daughter was so supportive, whether she was there physically or not. Try not to project the worst. Maybe the cancer is at an early stage & she'll need just 6 chemo treatments. I worked (after recuperating from a hysterectomy) all during the 6 months of chemo. I took off the day after chemo but was able to work & function. It's the fear & anticipating that first chemo that was the worst. I think if you can be with her during surgery, & the 1st day of chemo if she has it would be helfpul-but there is now so much info on line available & only so much treatment that is typical that you will slowly learn & help her to be her own advocate. We all have daughters & grandchildren & Husbands & hang on for them. I don't know if I could handle being in your position. It's easier sometimes for me. Good luck & I hope its as minimal as possible! Linda

AuthorUnknown
Posts: 1564
Joined: May 2006

I feel as badly for the family as for the cancer victim since I know how helpless you all feel. I have my 2nd recurrence with ovarian cancer & my 29 year old daughter was so supportive, whether she was there physically or not. Try not to project the worst. Maybe the cancer is at an early stage & she'll need just 6 chemo treatments. I worked (after recuperating from a hysterectomy) all during the 6 months of chemo. I took off the day after chemo but was able to work & function. It's the fear & anticipating that first chemo that was the worst. I think if you can be with her during surgery, & the 1st day of chemo if she has it would be helfpul-but there is now so much info on line available & only so much treatment that is typical that you will slowly learn & help her to be her own advocate. We all have daughters & grandchildren & Husbands & hang on for them. I don't know if I could handle being in your position. It's easier sometimes for me. Good luck & I hope its as minimal as possible! Linda

rocki
Posts: 5
Joined: Nov 2004

Thank you for your advice. It helps so much to hear from others who have dealt with a similar situation. I'm still overwhelmed, but am feeling better and as though I have a little more direction. We have arranged an appointment with a cancer center for next week and my job is being very supportive. I'll fly out in a few days and plan on staying with her for about a month. This whole thing is so difficult. Thanks again for helping...

groundeffect
Posts: 651
Joined: Mar 2003

Hi rocki, I have to admit I had to go back and look up adenocarcinoma again.

Adenocarcinoma: This term is applied to a malignant tumour originating in glandular tissue.

You don't mention how old your mom is, and I'm only guessing that the docs suspect ovarian cancer. I would suggest that you not get too upset until you hear the official diagnosis - when you do, you'll be able to delve more accurately into what her outcome will be.

I wonder what's holding up the surgery? I truly hope her surgery will be performed by an experienced gynecologic oncologist. I had to drive two hours to the hospital to visit the surgeon and then for the surgery, but I am very, very, glad that my ob/gyn encouraged me to do it. I had no idea that I had ovarian cancer going in, but had already been diagnosed with uterine cancer. This is not a common thing to have happen at all, but was a somewhat happy circumstance for me - I thank God that they were low-stage, and that my prognosis is very good!

amymombblb has solid advice about contacting the ACS in your area.

I worked through my treatments, but I didn' have a full-time job at the time and could pick my work time. Your mom is bound to feel sapped of her strength at the very least for a while, if she's having a hysterectomy. The type of chemo will depend on her diagnosis, so it's a little too early to know if she'll have standard chemo treatment and what occurs during that.

I lived about 1500 miles away from my dad when he started having health problems, and I know how tough it can be. I was worried all the time, and had to consider moving him to live with me, and fortunately, my sister chose to move back to our hometown and undertook his care. You'll have to think about what role you'll play if you do move back, and decide if that will be acceptable to you. Moving back was not a consideration for me - I had too much invested in my relationship and my home. Visiting would be a good thing. It would give you the opportunity to consider the situation, and decide if it would be a good thing for you to move there.

You really should contact whatever social services may be in your mom's area, explain what's going on, and see what they advise.

My sister ultimately found an ally in our local social service group, who helped guide her through the legal processes and find a suitable living situation for my dad. We all felt better about him living the rest of his life in a house with people around, rather than spending it in a big house by himself. If your mom is a candidate for social security, the agency should be able to advise her on that, also.

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