When I first wrote this, I was new to this group, as my husband, only 47, had been diagnosed on July 20, 2005 and had surgery on August 1 to remove a single 4.8 cm gist with about 15% of his stomach and his gall bladder. It had been a tough few weeks, on both of us, both individually and as a couple. I had spent a lot of time in tears (totally unlike me.) Then I felt guilty for feeling sorry for myself, when it is not me that is sick. I had to "get a grip", too. This diagnosis first had us stunned and somewhat in shock. The surgery left both of us exhausted,and emotionally drained. Things may never be exactly they same again, but I was determined to find the "new normal" that I had been told exists out there.
We are, among other things, volunteer firefighter/EMT's. Part of our EMT training course dealt with "emotional aspects of emergency care" -- in other words, dealing with patients and their families who might be in a death and/or dying situation. Never in my wildest dreams did I ever think that I would have had to be applying this training and knowledge to my husband, at least not for many years. Being diagnosed with a GIST puts a family in a whole new category, since there is such unpredictability with GIST. Not everyone goes through all of these stages in the same way or order. Some may even skip a step. It is just as relevant to the caregiver, as the patient.
They are:
1 Denial (Not me or him/her) A defense mechanism that allows people to feel there must be a mistake in the diagnosis. A denial of facts, even with overwhelming evidence, can make a person hard to deal with.
2. Anger (Why meor him/her?) People may become angry and take it out on those closest to them. Others must be tolerant and patient and not become defensive. (After I originally wrote this, someone wrote me back and said that she was asked "why not you?")
3. Bargaining ( OK, but first...) Asking for a "little more time" to feel good, finish goals, etc.
4. Depression (OK, but I or we haven't....) After realizing bargaining won't work, despair may set in. People think of all the things they won't get to do. They may be silent and retreat into their own world.
5. Acceptance ( OK, I am or we are not afraid I him/her will be fine and handle it all). At this point, people make peace with their situation. They accept what is ahead and are prepared to deal with it.
Sometimes family and friends may require more emotional support than the patient. Not everyone moves through these stages in the same way, order or time frame. Some people skip around or skip over stages. Some people make up their own stages, too!!
In our case, he tried to go from 1 straight to 5. Let me tell you, it didn't work. I knew he was being unrealistic in his expectations of his post-surgical recovery (immediate and complete recovery, back to normal in 2-3 weeks.) He refused to believe he would be weak and tire easily and tried to prove it by doing too much, too soon. It sent him into #2. He was nasty and short tempered in general and he had been taking it out on me...big time. The wife/EMT side of me was very understanding and compassionate and was trying to take the "crap" he threw at me by not taking it personally or losing my temper. It was NOT easy, but I knew he was really mad at his own body.
Trying to do too much caused him a trip back to the ER to get fluids for dehydration, and finally he "let go" and broke down with the ER doctor, realizing (admitting) he is into #2. When I got to the ER. he acknowledged how he has been acting and apologized for his behavior, telling me how much he did appreciate me and that I was going through it "with" him. I believed we would avoid the antidepressants (for both of us). Then one day, he woke up and said he had a "new attitude". I felt we were truly into #5 and I was looking forward to it!!
After I posted this, I received some GREAT advice. I was told to LET people help when they offer (hard for me to do). I was told to vent and whine and even get away from the situation when I needed to. Most of all, I was told to keep talking to each other, about anything and everything, being honest with my feelings, but staying calm if he vented (hard to do, when he got nasty with me). I was told to tell him to say anything he needed to and to listen without trying to "fix it". It is about HIM, now...