carolmcb's Cancer Blog
October 16, 2007
| Little Support from Medical Team | Views: 718 |
I sorry if this will be considered to be a rant.
Am I experiencing something unusual here? I honestly expected a great deal of support and involvement from the medical team that is taking care of me. I don’t feel that at all.
I know that due to the stage of my cancer there is almost no hope but I did expect more a more caring attitude. My husband and I feel alone and lost.
I have known others diagnosed with breast cancer who had volunteers visit them just as soon as they began treatment to discuss hair loss, wigs, chemotherapy and radiation treatment side effects,prosthesis and support groups. Maybe that was because their cancer was at an earlier stage and they had hope of survival.
The day I was to begin chemotherapy my oncologist told me to get a free wig from the chemotherapy people. It’s not that I’m so stupid that I didn’t know that I would most likely loose my hair. I did but I was looking for options and believe me the free wigs are not an option. They look like “chemotherapy wigs”.
Someone did offer to have a representative from the American Cancer Society contact me. I did get a voice mail yesterday after weeks of waiting. I sure she’s busy.
To orient me for chemotherapy, I was shown a DVD that was broad based for many types of therapy. It answered some questions but wasn’t in enough depth or detail for what I’m going through.
Another thing concerning me is that I have a different chemotherapy nurse each week. This may be standard. I was reporting any side effects but I just get told—that’s normal. Well, not for me. The nurses are busy so there is no real time to talk to them about what is happening to me.
I know that I must be proactive and that I am responsible for myself. But, so much is going on. I am having to go on Medicaid to pay for my treatment. We are still not sure that it is going to be approved. This takes a lot of time and research. I am also applying for Social Security Disability. This is also taking a great deal of time and energy. And right now it’s energy I don’t have.
Before going in for treatment for the cancer, I had been feeling very ill for a long time. I was almost incapacitated. After the mastectomy, I felt wonderful. I truly felt well. While I was a little tired, I improved every day and I was beginning to have the ability to try and face what’s going on.
The first chemotherapy treatment just left me fatigued but with no other side effects. Then after my second treatment I had gas, indigestion and great pressure in my lower abdomen. This resolved in a day or two. Then after my third treatment last Friday the symptoms came back worse than the first time. When I called the oncologist, I was told that my symptoms didn’t match side effects from either of the two chemotherapy drugs that I am on. I know that the oncologist thinks that something else is going on and the recommendation was that when it gets too bad go to the emergency room. I just felt rather abandoned. I know that I need to go in and see what else is going on but with appointments with Medicaid and Social Security there isn’t time right now. Money trumps health care.
Again, sorry for the rant and rave.
Thanks for your support -
Sounds like you need to do more shopping. No not clothes shopping or other fun shopping trips but onco shopping.
All chemo places aren’t the same, all doctors aren’t the same. Some are homey and sweet, some are pure clinical. Some you get the same nurse and doctor everytime you go in others nobody knows your name. Consider attending a local cancer support group meeting just to find out where other people in you area are going and what their experiences are like. I went to several. The first oncologist I went to said these exact words on my first visit. “Umm you have stage 4 colon cancer with mets to your liver, stage 4 colon cancer is usually fatal.” No suggestions on possible treatments or surgery options basically just go home and die. That was about 3 years ago.
That is when I found out the secrets doctors don’t want you to know. 1.They don’t know everything, sometimes nearly nothing 2.You should always get 2nd,3rd.4th opinions or as many as you need to feel you are in control and have enough details to make decisions.
I went to 6 surgeons. and this is after the oncologists. The first 5 wrote me off for dead then I read Lance Armstrongs book “It’s not about the bike” and I became quite a fighter, a doctor would start talking negative and sound hopeless, I would just get up and leave and go to another.
I finally did some research and found one of the best cancer hospitals in the country which happened to be about an hour away. E-mailed the surgeon directly that seemed like he was a great match for my case and got an answer right away. He looked at all my scans and said I think we can do this. I broke into tears and laughter and now everytime I see him he still gives me a hug when he sees me and so do the oncology nurses that used to give me chemo. So if you don’t get hugs find another one. Don’t be worried you will hurt their feelings like I did the first time. It is your life and you want them to fight for that as hard as you are. Don’t get me wrong I am sure at some point this will get me probably in about a year or so. We don’t come here to stay. So I am ok with that I have had almost 3 years now that I wouldn’t have had if I would have listened to the early surgeons and doctors. I have used that time to make sure my family knows how much I love them, to travel, to watch my daughter get married and be happy. nothing beats that. The avg lifespan of someone diagnosed with stage 4 colon cancer is only 8-10 mos. I am sure that is all some doctors look at when evaluating patients. Thank god there are some out there willing to give you as much time as he possibly can. Statistics be damned
Good Luck to you
Donna Richno
Stage4.blogforacure.com
Hi Carol,
It’s godd to rant when you have cancer. It helps to relieve the pent up frustration and anxiety we experience. I think a lot of us have the same feeling about the lack of meaningful and heart felt support from our medical teams. I’m being treated for melanoma at major West Coast cancer center, and I feel I’m just a number, another notch on their guns for the clinical trials they are conducting. A lot of the staff just don’t seem to give a damn about their jobs, and its reflected in their attitudes.
Anyway, those of us in your situation do understand and empathize with you. I’m going up there for an immunotherapy infusion, and am dreading it not so much because of the treatment, but the nasty unsupportive people. I’ll keep you in my thoughts and prayers today. Rant on!
Carol, you don’t need to apologize for ranting. This is the perfect place to do that. You’re entitled to ranting, raving, screaming, throwing things, and yes, even pulling your hair out. After all, you’re in the fight of your life.
I don’t think I could’ve said it any better than Donna did. Because you’re fighting for your life, you need a team that fights as hard as you do. So if you’re not in the least bit satisfied with your treatment, go shopping for another oncologist, surgeon, medical team. There are options out there you can take advantage of. And don’t let fear and negative thoughts get to you. Don’t let someone, especially a medical professional, tell you that you need to just give up and that it’s hopeless.
You’re in my prayers…hang in there. Hugs…Grace
I say if you aren’t happy with the treatment you are getting I would see where else you could go for treatments.. Hang in there…
Hello Carol,
I do not think that you are ranting or raving but even if you were this is certainly the place to do it. I am very surprised that you chemo nurses’ are so impersonal. Have you spoke with your oncologist about this? I think that this is just awful. Fortunately, my oncologist and every nurse I have jad has been exceptional.
I had to get on disability, for I have been divoced since 1986 annd was raising 3 children solely on my own when I was dx with CML, fortunatly a very close friend that is a Hospice Social Worker, her husband owns a very large company called Allsop Inc. that only takes care of disability and social security and since I had cared for many of her patients and she knew my situation quite well, by the Grace of GOD her husband took my case at NO CHARGE. What a Blessing that was, then I am not ashamed to say that I then had to get on Medicaid, my monthly prescriptions is more than $17,000. and I don’t know anyone that could pay that amount. I am not embarassed for I have worked since I was 16 and being dx at age 38 was enough of a shock…. I pray that you will be able to get on disability with no problem though I will tell you that I have heard that most people that I know are denied the first time but you just have to immediately apply again. I know it sucks but that is just how it is now. Please don’t get discouraged. Happy Thanksgiving
Hugs, Patty