Need a place to release

rivercitysavage · New User Joined: 05 Jul 2009 Posts: 1

Hello,

I am new here, and trying to cope as best I can with an unsure future and hard road ahead. I need to feel as if I've vented, because I feel like I can't let my kids, husband and family know how desperate I am.

I have had 5 brain surgeries in 6 months to deal with brain tumors and infections because my immune system is shot. In May, the doctors noticed some problems in my sinuses. They went ahead and operated on my skull again anyways. I had to go in for another craniectomy in June, and at that time they found that 3 out of 4 of my sinuses were completely filled with tumors. The doctor walked in the room, showed me the CT, gave me the news, apologized, and walked out.

Right now I am on IV antibiotics at home fighting off a brain infection. A simple facial bacteria caused a massive brain infection for me, because I have had several cranioplasties. My immune system is having a problem fighting normal bacteria, and they don't know why. They biopsied me, it hasn't spread past my sinuses yet, but it's malignant, say that all they can do is watch my sinuses and wait, that they can't operate or start treatment because I have an aggressive infection in my brain and they can't attack my immune system.

I am so scared that I am going to die. I am 25 years old. I feel so hopeless. I feel like they are just sitting here and letting me die. How in the world does anyone deal with their diagnosis?

Is there anyone out there that has had to wait for treatment because of a compromised immune system?

- D

brainman · Posted: Mon Jul 06, 2009 4:37 pm Post subject: Re: Need a place to release

D, I am very sorry about your brain cancer. Yes, they did have to put on hold my chemotherapy several times due to low white blood cells and because I kept getting infections. I think that is a rather common experience for anyone with cancer. Just do what you can to help your immune system to remain strong.

When I was fighting my cancer, I too felt like I needed to protect my family. However, I also realized that whatever I did, they would still know something was wrong and they would hurt in ignorance rather than fully informed. I just read a message for a person whose parents will not tell him what is going on. In the dark is not a good place to be. You also need their support and comfort. Yes, I hope you find some strength and support here among "strangers" but there really is nothing like a hug from a real person. I encourage you to at least try to open the lines of communication with your family.

What specific type of cancer do you have?

You are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
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kenobewan · Regular Joined: 10 Jun 2009 Posts: 25

We have all had infections and low blood counts. I also had major clots in my legs - 11 and 12 cm. Unfortunately, this is something that comes with the territory. Not wanting to add to your fears, but around 30% don't make it past such side effects.

Now the good news! Your age is a major benefit. If they managed to remove all the tumor, this is another plus. A lower grade would than 4 would also add to the good news. If you have not lost functionality, known as a high karnofsky score, then this would also significantly improve your prognosis. See - there may be already a couple/several things to feel positive about Smile

.

Unfortunately, while there are many good doctors out there who treat us as human beings they are few and far between. Too many doctors are treating a disease not a person. When I was in hospital, every morning the lights were thrown on at 5am and I was stabbed with a needle in the stomach (blood thinner), usually roughly, before I had time to object. I was also shouted at and spoken down to because I couldn't speak properly. So believe me when I say you are not alone. Rather than communicate effectively with you, they decided to deal with the disease.

Many of their colleagues who care about us as people may not be aware of the extent it happens. More good news on this front. All over the world there are emerging cancer and brain tumor centers, where they do care and have a higher standard of care. Keith Black at Cedars-Sinai calls this bench to bedside to explain the science behind their success, but there is another reason they are succeeding in getting results better than twice the national average. The bottom line is the when you read the books and articles of these specialist brain tumor surgeons you get a good sense of the empathy they feel for us as people.

A trouble shared is a trouble halved. I believe that dealing with your emotions through a forum or helpline is a good first step. As brainman says, this is no substitute for a good hug. It is important for you to manage your stress levels too and bottling up your feelings won't help. Its a fine line between this and falling into an emotional hole. You will naturally feel emotional after such a traumatic ride, but ensure this doesn't start to rule your life. Staying positive is paramount to any successful outcome.

All the best with your ongoing treatment Smile

. Please keep in touch about how things are going.

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