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Hello, New here and wonder what our future holds

trillock
Posts: 1
Joined: Jan 2003

Hello everyone. I want to first say that I am in awe of you all. I read your stories about your triumps and struggles and find them very inspiring. Congratulations to each of you for your success in beating this horrible thing, and I pray for you and others still going through that the rest of the treatment will be swift and as painless as possible.

My story is as follows.
I am not the cancer patient. I am the live-in cancer patient's pregnant girlfriend. My boyfriend, age 33, suddenly grew a big lump on his neck in the fall of last year. Him, being the man he was, decided that if it didn't hurt he didn't need medical attention. Then it just turned into a nuisance. Other doctors put it off saying it was nothing and would probably go away on its own.

December 4th, I found out I was pregnant. After he found out I was pregnant, then he started to worry about what his lump was. Tests confirmed a week ago tomorrow that it is indeed Hodgkins. We are devestated to say the least.

I worry about going through this pregnancy along side his chemo. We are a one incomed family (his), so financially I am scared to death. I have no family around for support. Plus, I have a 4 year old daughter already. Neither he nor I have ever been around cancer or chemo so I am unsure of what to expect as far as his health condition. He goes in Monday for his first Oncologist visit.

Anyone with any financial or emotional suggestions for getting us through the next year would be greatly appreciated. Thank you in advance for the help and thank you for listening to my story.

God Bless.

dpomroy's picture
dpomroy
Posts: 137
Joined: Dec 2000

I'm sorry I don't have any financial advise for you, hopefully others will. Sorry you have to go through this at all! The best advice that a nurse/friend gave me was to immediately start keeping a notebook to record everything. Keep track of the appointment and treatment dates, tests you've had done and where so that you know where the films are being kept, what medications and drugs you've had, doctors office address and phone numbers, questions that you want to ask your doctor, etc. It is such an emotional and stressful time that it is almost impossible to keep it all straight in your head. Best of luck to all of you.

pommerenk's picture
pommerenk
Posts: 5
Joined: Oct 2002

Hi there, Wow life is really testing you right now isn't it? First keep in mind that Hodgkins Disease now has a pretty defined treatment and VERY high survival rate. I always use the famous hockey player Mario Lemeaux as an example who was diagnosed with H.D.during the hockey season. He was treated with radiationa and was back on the ice 6 weeks later and ended the season having scored the most goals of anyone in the league. Of course this is an optimal situation but is becoming a more familiar story every year. As far as financially, I can only tell you what I am familiar with...I live in California, out of every paycheck money is deducted for State Disability Income for such circumstances, I would definetly look into what is comperable in your state (assuming you don't live in Ca.) when that income is exhausted contact Social Security for Disability Income. Alot of employers will suplement the difference between the S.D.I. and your regular pay with what available sick pay your husband may have available. Best wishes to the both of you...and the addition to your family.
Randy

Joe_G
Posts: 2
Joined: Jan 2003

I had stage IIB Hodgkins and did a 6 month cycle of ABVD chemo, and I was able to continue working about 25 hours a week as well as take 6 hours of college. It's a little draining but as long as your husband keeps a positive attitude, like everything else, it will be over soon enough. Keep your head up!

Joe.

hollywo0d4
Posts: 5
Joined: Oct 2002

MOMMY IN CRISIS

Being fortunate to have many friends of a giving nature, I did not have to walk through a life threatening illness alone. What I am prepared to share with you is from my own experience, strength, and hope.
With my children being the first priority in my life, it was difficult to make the shift to number one being myself. Like the oxygen in and airplane, as long as I am able, I cannot help another until I help myself first. Allowing myself to be sick is still difficult, however, I do my best to listen to my body and cater to it. Don't get me wrong, being ill and being a mommy don't go together naturally. However, channeling energy in the right direction can reduce stress, work, and financial strains. Although more resources would be helpful, there are several available. Asking for help has never been my specialty, but asking for help knowing it was to benefit my family made it easier. It also helped me to feel as if I was doing my part to do anything I could.
If you are, have been, or would like to be part of religious or spiritual organization, do let them know of your situation and how they may be of assistance. Many people find it rewarding to help a family in genuine need. So consider it doing someone a favor allowing them to help fulfill your needs. Mommy and Me has a Meals for Moms program as do other groups. Anonymously or to see a friendly face, a nice meal delivered to your door for your family removes the obligation for anyone in the home who may be busy doing something else. These meals typically go a long way and are delicious too. A huge hurdle was a financial one. Not only being unable to work, I also found myself unable to care for my newborn and young toddler. Firstly, admitting that and how scary that was is still difficult. I learned by reaching out as well as listening that my feelings were not unique, even those I thought were wrong or bad. They were common feelings to others in my position, and yes, unfortunately there are others. I needed child care since my husband had taken all the time off he could. This is when I learned just how much survival instinct a mother has. My friends did several car washes and a huge opportunity drawing. The amount of money collectively raised paid for child care for almost a year. Although not overly involved, I was able to participate in organization and making phone calls. EOB also has in-home child care paid for on a sliding income scale. Also, with a trust fund account and a post office box, a letter was written by friends and mass mailed to everyone I know requesting anonymous financial help. The paper, printing, stamps, and time were all graciously donated. People responded overwhelmingly positively and I could wallpaper my home with the cards.
As far as medically, not one doctor was offended or intimidated by my bringing a mini tape recorder to every appointment. My mind was foggy with many thoughts and information. The recorder was helpful in retaining information as well as reference for looking for further details on the Internet. The Internet became my best source of communication. I published regular "update" emails allowing the mystery of my disease to be removed as well as giving me an outlet to release some feelings at any time of the day. This may have allowed some people to feel more comfortable around me, but some were just unable to deal with my situation. I have learned not to fault them because I am not sure how I might have been if it was not me specifically who was ill.
Having had a nasty case of cancer, I am aware of the tremendous amounts of free services offered through the American Cancer Society and they are eager to help. There is at least one reimbursement program for $500/year that is very easy to qualify for. The local Society offers counseling, free wigs, free classes with donated high quality make-up kits. There are support groups for just about everything here in town.
Although utterly grateful for the medical insurance I have, bills continued to add up faster than most could or ever will have to imagine. CO-pays, percentages, deductibles, and out-of-pocket expenses accumulate. Be sure to only see physicians on your plan. Now here is the reason this is written anonymously... Most doctors, as well as medical facilities, have a "hardship" form. Fill it out every time prior to services rendered. Then ask the doctor face-to-face if they can assist to reduce your costs. Have a printable letter available explaining your "hardship" to mail to institutions requesting they accept "insurance as payment in full" and photocopy and list any and all of your monthly bills. Include EVERYTHING. Be ready to make copies and drop in the mail in a large manilla envelope. You may be surprised.
And last but not least, fortunately I am still here to share these tips with you, but if I was not so fortunate, I learned to share the message of love and forgiveness with everyone around me on a daily basis without being overbearing. And with that, I find it necessary now, to give back to society any way I can because I have seen just how much love there is out there and how much is given freely despite what is usually publicized.

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