One patient with glioblastoma still alive nine years later
by 3lilangels on Fri Jan 23, 2009 12:00 AM
by trehouse60 on Fri Jan 23, 2009 12:00 AM
Sorry to hear you're having such a tough time.
You have lots of time to straighten out your feelings about possible missed diagnoses and wasted time - and you will eventually need to do that, because harboring anger and resentment will only lead to bad chemical changes in your body that you don't need. However, what is important right now is getting yourself ready for surgery.
So, step back from everything, take some very slow deep breaths and blow all the mental and emotional turmoil away, and refocus on the things you need to be doing right now.
First of all, you need to find out as much about your surgery as you can. You already have many answers, but there is still some to learn. If you haven't already, get yourself some kind of a notebook - a spiral memo pad works just fine - and start writing down questions that you still need answered. Then when you have a chance to get them answered, make sure to write down the answers, too, so that you won't forget later on what was said. If you can get someone else to go with you to dr's appts, etc, have them be your secretary - if not, just ask the doc to be patient with you while you write stuff down, so that you can be your own best advocate.
Find out how long you might expect to be in the hospital with your surgery, and how long after coming home it will be before you can resume lifting, climbing stairs, driving, etc - this way you can get an idea of how much help you might need. Telling your family, "Hey look, I'm gonna need help doing this, this, and that for x number of days" will help them to get more real about your situation.
Also ask what the treatment plans will be after the surgery. It's true that for everyone with cancer there is a great unknown about treatment until the surgeon gets in there and finds out what's what, pathology reports come back, etc. But still, your dr(s) should be able to give you some idea now about what further treatment might be needed, etc.
Also, in your notebook, take some time to write down your past history - all the stuff that you mentioned in your message - get it all recorded in one place. Who did what, who said what and when. There may come a day when you consider consulting a lawyer, and this information will be needful.
Try to get written copies of your records, and cd's of any scans or xrays you've had. Start a file folder for cancer and other health records, and keep it in a safe place.
Approach these tasks matter-of-factly, as something you are doing proactively, and that is much easier to do NOW, before surgery, than it will be afterward. (And yes, keep asking for copies of your records, lab reports, path reports, etc, AFTER the surgery.)
Staying busy right now is a very good thing, but make sure you aren't spinning your wheels. Think about the things you need to get done in your house, to have it ready for you so that you don't have to worry about stuff for the first several weeks while you are recovering. It's not too early for some spring cleaning. If you have the food resources and access to a good freezer, cook up some meals ahead of time, and freeze them. YOu will be thankful to be able to just pop something in the oven or microwave, especially on days you might not feel so good. Anything that you can anticipate you will need done in the next two months, and that you can get done now - apply yourself to achieving it and getting it out of the way.
There is nothing wrong with acknowledging your fear, but don't give in to it. Yes, being told you have cancer, and that you have to have major surgery IS a scary thing. I doubt there are many patients or survivors who post to this board who would say it's not. But we each in our own way learn to cope with the scariness, and move on with the things we have to do to get well. Lack of knowledge feeds fear, so do what you can to get yourself educated about this cancer and its treatment. If you have more questions, you can always ask them here.
You didn't say how old your son is, but remember that children can be amazingly flexible and resourceful - they don't have all the preconceptions about things that we adults can let clog up our emotions. Tell your son what he needs to know - that Mommy is sick, but that you're working on getting well. Explain to him that you're gonna be gone from home for however long, and that when you come back you're gonna be sore and maybe not able to do some things. If he's old enough to help with stuff, enlist his help, and let him be a part of your recovery. Doing so can be a wonderful confidence and esteem builder for children whose parents are ill.
You might see if you can find a local cancer support group - either one that has members with reproductive cancer, or one that has cancer patients and survivors of all or any kind of cancer. Especially helpful would be a group that has families. The people best suited to help you with your son while you deal with cancer are other people with children who have also dealt with cancer.
Also, take some care of getting yourself physically ready for surgery. Eat your veggies and whole grains, lots of citrus fruits and berries, get lots of vitamin c and other nutrients. Drink plenty of pure fresh water to get yourself well hydrated. Make sure to get some exercise (other than cleaning house!) Maybe take a look at complementary and alternative therapies - many resource sites provide good info on nutritional and immune system supplementation that is good for pre-operative preparation as well as post-operative treatment.
And any time you find yourself getting angry at people again, or just losing your cool or getting anxious about what's happening, just remember - step back, take some good deep breaths, and refocus on the here and now, where you are, and what you need to be doing.
Try to make some time for relaxation, too. The more you can laugh, the easier this process is, and the better you will do with treatment. Everybody can benefit from 10 minutes of good belly laughter a day - so aspire to that goal. Enlist your family and friends in that goal - it may help them see that rather than telling you not to worry, they can better show you love and caring by helping you to prepare.
Please let us know how things go, and anytime you need to vent some more, the message board is here!!
by PigNm on Sat Jan 24, 2009 12:00 AM
On 1/23/2009 3lilangels wrote:Hello out there. I got on here about a month ago and told my story about having adenocarcinoma in situ and my doctor wanted to do a cone biopsy. Well I had the cone biopsy done on December 30th and found out on January 7th that I have cervical cancer. The stage is 1B1. My tumor is still very small but it has started spreading to lymph nodes and surrounding tissues. Last friday I went to see an oncologist from Salt Lake and he is going to do a radical hysterectomy on Feb. 26th. He is taking everything exept for my ovaries and said he will be removing some tissue and about 25 lymph nodes. He is going to try to do a laparscopic hysterectomy but if he can't due to too much tissue he will make an incision. After the surgery I have to have a cathedar for 2 weeks and be out of work between 2 to 8 weeks. I am very scared. Anything could happen between now and the time the cancer is completely removed from my body and the people I know don't really understand. It's driving me crazy. Now is the time I need them the most. I need them to listen, let me cry on their shoulders, and let me get angry. Unfortunately, they don't. I don't have a very good support system. I constantly hear, quit dwelling on it, its not like your dying. I wouldn't stress about it its still early. My son's dad told me today when I asked him to help comfort our son, he said my wife said this is very common and people get it all the time. You'll be fine so he'll be fine. I am so angry about all the things I hear. I know their is a good chance that my cancer isn't going to kill me and I will be a survivor, but I am so sick of people telling me to quit worrying about it. I am scared to death and sometimes I feel like I am falling a part. It is constantly on my mind. The surgery, am I going to die, will it spread, how am I going to afford to be out of work for up to 8 weeks, what will happen to my kids, my house is going to be a mess, how am I going to pay all the bills and so much more. I feel like I am slipping in to a depression. I don't mean to. I try to keep my self busy so Im not thinking about it. And I am angry at my old doctor for not following up on my abnormal pap smears. If she would have I would not be here. I also found out from the oncologist that the HPV my old doctor gave me is wrong. She did a HPV test about a year and half ago when my last abnormal pap came back. The HPV test came back negatvie. The oncologist said that is not possible. Somebody screwed up somewhere. I just don't know what to do because my new doctor said that she would have done the same thing. If an abnormal pap came back she would have ordered an HPV test. If the test came back negative she would not have followed up either. The oncologist said nothing is ever 100% so there is a chance the test could have been a false negative. So if there is a chance HPV test come back negative why do they still not have to follow up on abnormal paps. Why get a pap if they don't follow up on all abnormal paps? I am angry. Thanks for listening. If you have any advice I would love it. Thank you from 3lilangels
Hi My name is Nancy and I have ovarian cancer stage 3c and was dx in June of -07. I had a full hysterdectomy in july 07 and they also did a debulking, which is looking in adbomen for any partials of cancer and removing them.
Just some information you should be aware of. You mention they will do a lapascopic and not a incision unless needed. I would very highly suggest asking about debulking and having them do the incision surgery and not lapascopic. A GOOD debulking is done better with an open incision than laposcopic. You will be better off in long run. Its harder for you recovering but them doing a debulking is more important to your future health. I don't mean to scare you more but Debulking is a crucial part in getting rid of cancer. Ask your doc about it.
Sorry for your family not being supportive to you, but I would sit them all down and yell and even cry at them and get them to listen to you NOW> You will need them. Bring your husband to the doctors with you and have doc talk to him. Its a important part in recovering and dealing with cancer, having family and friends there for you.
You have cancer compass support we all are here to talk with and will help you get through it. Nancy
by AGiftFromGOD on Sat Jan 24, 2009 12:00 AM
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.