• Gururobb's Avatar

    Gururobb posted an update

    Free coffee and donuts for the oncology patients. Whats next? Marlboro man passing out coupons? The longer I visit hospitals the less sense they make.

  • Gururobb's Avatar

    Gururobb posted an update

    I would like to apologize to anyone who may have been concerned about my sudden disappearance from Whats Next. It wasnt planned or intentional. In fact, Whats Next and the support its users generously share has been sorely missed. To some up what happened I would have to say this, I announced my cancer to the world as it happened. Living in a small town and having a huge extended family generated responses and feelings hard to deal with. Poking my head in the sand while I dealt with cancer myself seemed to be the only way to stop myself from going crazy.
    I appreciate all the prayers in my absence I assure you, It wasnt un-noticed <3

    2 Comments
    • danellsar's Avatar
      danellsar

      Welcome back. Glad to see you are still kicking b#tt and not letting the doctors walk all over you.

      over 7 years ago
    • susie81610's Avatar
      susie81610

      I can very much understand where you are coming from with your decisions. I believe there comes a time when we really start thinking and like you said feel like you are dying before being treated like you are. Iam on a break for 7 weeks I'm going into a trial program so I will be going to a whole new treatment center. It has really given me time to think and how I feel with no chemo or radiation. I was in the hospt last week they ended up having to tap my left lung but said it's not uncommon.
      Take your time and feel yourself again if you need someone to talk to that feels like you do just give me a hollar I have until June 18th before any type of treatment will be done and it may be longer than that. Good luck to you BIG HUGS to you and stay strong, stand tall.

      over 7 years ago
  • Gururobb's Avatar

    Gururobb posted an update

    Am I the only one that hates the Facebook Blue NavBar??

    I kinda liked the old orange one

  • Gururobb's Avatar

    Gururobb posted an update

    I apologize in advance if this offends anyone. But.....

    The thought just occurred to me (after a recent Drs Appointment)
    This Cancer stuff wouldnt be so bad if these people wouldnt stop walking in the room and telling me im gonna die of cancer no matter what. The Most recent lil girl even through in a "definite"
    So Now they wanna start a chemo regime. And poison me in hopes of extending my what has been up until recently a sympton/pain free life.

    1 Comment
    • danellsar's Avatar
      danellsar

      Robb- I totally agree. What's more, each person's journey is different. I spoke recently to a man who got the same diagnosis as my husband, stage 4 esophageal. He was told he had weeks to live. He is now 5 years out, and cancer free because he responded SO well to the chemo that it got rid of his tumor. My husband, on the other hand, has had little or no relief from the chemo, and not much good news.

      The thing to remember (and it seems you are doing this well!) is that you are alive now and able to fight!! Keeping a positive attitude is critical to playing an active part in your treatment.

      almost 8 years ago
  • Gururobb's Avatar

    Gururobb posted an update

    I think my Goodwill Counter is Broke :-(
    :JuSSayin: LOL

    3 Comments
    • DaveWaz's Avatar
      DaveWaz

      Our site is not perfect. Can you give me some thoughts as to why you think it is broke? Thanks,David

      almost 8 years ago
    • Gururobb's Avatar
      Gururobb

      Well I started with a 5 and up until now it had stayed a 5. I was commenting and even filled out the questionnaire assuming Id get some kinda perks. Had come to decide it was simply based on people following you (since I only have 1).

      Honestly Dave its not a real concern. I tend to be a sarcastic arse online. Im just glad to have found this wonderful resource.

      almost 8 years ago
    • DaveWaz's Avatar
      DaveWaz

      No worries. Good will is based on a variety of things you can read more by clicking on help at the top. People earn goodwill based mostly on how others react to the things they do less than the acts of the individual.

      almost 8 years ago
  • Gururobb's Avatar

    Gururobb posted an update

    Feeling So overwhelmed. Its only been two weeks since I was diagnosed with stage 4 esophageal cancer. Ive received radiation treatment on the tumors on my brain and have been told to wait and see how my body reacts before doing any more treatments. I find this difficult to believe. All the research I have done has told me the survival rate is exceedingly low for people diagnosed with stage 4 and yet Im supposed to get results from my brain tumor treatment before we attack the other parts of my body actively producing cancerous cells. Why cant we treat the esophagus tumor before I start having symptoms and while Im still able to eat and my body is (relatively) healthy?

    And as for researching healthier ways of living. Who to believe is mind numbing.
    [/rant]

    3 Comments
    • danellsar's Avatar
      danellsar

      Rob- It IS mind numbing and madening. Some days it feels like the doctors don't even believe that the things they are doing will really help.

      On the other hand, my husband is 8 months post diagnosis, and over a year since he started having major symptoms, and he's still able to eat. He HAS lost quite a bit of weight due to nausea and cramping, but he is still able to swallow most anything. When he was diagnosed they said that his esophageal tumor was so big he "shouldn't" be able to eat anything, yet he still is.

      One thing that has helped maintain his weight and nutrition is using weight gain shakes like Scandi shakes or Ensure (Scandi can be ordered through your dr or hospital, but have a much higher calorie level). I take the shake, and blend it with fresh fruit or yogurt to up the calories and the nutritional level. It's a quick and easy way to get a meal in, even when he's feeling so awful he can't tolerate much.

      One other piece of advice... BE PUSHY. Or, have your spouse be your advocate, but don't take "no" for the final answer. They can't see you for 3 weeks? Really, I bet there's another doctor or another location, or a nurse practitioner or PA that could see you sooner and get the orders done. They don't want to do treatment until X or Y happens? What test will they run, when, can I have an appointment to discuss that?? Make sure they feel your urgency and PUSH!
      Ellen

      almost 8 years ago
    • Gururobb's Avatar
      Gururobb

      Thanks Ellen. The wife has been screaming pretty much the same thing and Im asking here "to work on her people skills" lol
      Hearing an outside opinion of someone in a similar situation is unbelievably valuable in this new territory. For both of us :-)

      almost 8 years ago
    • danellsar's Avatar
      danellsar

      Rob- You got what I assume we got as far as prognosis of a stage 4 patient (1 year with treatment, 6-8 mos without). It beyond immagination to get such a prognosis. So tell the wife to lose the people skills for a while and really be THAT pushy. The whole thing is like an awful nightmare, so having a strong caregiver who can advocate for the patient is the make or break factor.

      I remember standing there after the first oncology appointment and being told it would be 3 weeks before we could see a doctor again in order to get the orders written for chemo. My first response was that NO, we were not waiting that long. We tried other doctors, other locations, asked about double booking, etc. We ended up with an appointment in1 week instead of 3 with a fellow (post doctoral specialist) who was supervised by the head of oncology. Win-win. Saved 2 weeks in getting the workup for the first chemo. My husband just stood there in amazement that I'd said no to them about waiting, and that I'd actually gotten the appointment.

      Tell the wife that I am here, caregiver to caregiver, if she has questions. We have to walk this road together. We need others on the same road to find out about treatments and ideas, to share success and pain.

      almost 8 years ago