I have had my first visit with the cancer center in BC in Kelowna, yesterday.
It went very well and I even learned a few things.
The doctor I saw was a radiation oncologist and he had reviewed my records and was pretty amazed that a patient who had had radiation for gyne cancer would have the problems I am having. Through it all he concluded that I must just be one of those people who are extremely sensitive to radiation.
He had never seen someone with my kind of radiation develop proctitis, the enteritis OR the skin breakdown that I experienced at the end of radiation, the open wound that took 3 months to heal after radiation.
I quite liked him, he was pretty darn blunt.
He did have an explanation for how it was that I got these small bowel problems though.
I have explained some of this stuff a long time ago, but I am going to explain it again here with the newer information.
After a hysterectomy the pelvis is essentially empty, leaving lots of room for the small bowel to move down into the pelvis. The small bowel is more susceptible to damage from radiation, but since it moves around so much, one specific area does not get hit by the full 25 treatmentes of radiation. The Large bowel does not move around, as it is fixed to certain structures in the abdomen/pelvis, so it gets the dose the same for the 25 treatments. The large bowel is not as susceptible to the effects of radiation though. So this is why I have the proctitis, , the rectal area gets hit by each and every treatment. What I learned yesterday is that IF the small bowel is in any way "tethered" to anything in the pelvis, (such as when a person is post op and has adhesions, or scars HOLDING the bowel to perhaps a sidewall in the pelvis) then that area of small bowel will get the same dose every day for perhaps the entire 25 treatments. And being more susceptable to the effects, tends to sustain damage.
He was blunt about the follow up in describing the futility. So if the DO find a recurrence in the vagina, unlikely they could do much to treat it, because I could not be radiation any more PLUS surgery in that area would not heal.
The lesion that we removed 2 weeks ago thought it was very small, is not healing at all, it really does not do anything, so i am afraid I am back to that situation again, trying to get somethiung to heal in an area that does not heal well.
Things are going well, I am more thrilled every day to be here, we are spending more time with family all the time and it just feels right.
I starting in right away as a rabble rouser at the clinic.
There is this one policy they have that has the doctor who is on call for the ER going back and forth all day between the office and the ER. I laid out a plan and made a proposal to change all that and lo and behold, I DID get it changed and afterwards, everyone is saying "now why DID we do it that way" NO ONE liked it the old way, not the nurses, not the doctors and of course not the patients....and no one knew why we were doing it that way.
So all my years of training as a rabble rouser in the US, will definitely not go to waste.
We really like the other doctor we are working with, he is from Sri Lanka. He is extremely easy going and VERY easy to work with.
We also have a nurse practitioner whoe we work with and she is great too. The nurses in the ER are great too, in fact one of them was in the class behind me in nursing school back in 1977.
I really am starting to come to terms with my radiation stuff. I guess its like Kubler Ross's stages of grief and greiving. (She wrote all those years ago on death and dying, describing several steps a person goes through with any sort of loss) I am sure I have talked about this before, but mention it now, just in that I really can see that I have been through several steps of acceptance.
Kubler Ross's steps are : and note that this is actually on death and dying, but it has been found that people go through similar steps with any sort of loss
"The progression of states is:[2]
- Denial—"I feel fine."; "This can't be happening, not to me."
Denial is usually only a temporary defense for the individual. This feeling is generally replaced with heightened awareness of positions and individuals that will be left behind after death. - Anger—"Why me? It's not fair!"; "How can this happen to me?"; "Who is to blame?"
Once in the second stage, the individual recognizes that denial cannot continue. Because of anger, the person is very difficult to care for due to misplaced feelings of rage and envy. Any individual that symbolizes life or energy is subject to projected resentment and jealousy. - Bargaining—"Just let me live to see my children graduate."; "I'll do anything for a few more years."; "I will give my life savings if..."
The third stage involves the hope that the individual can somehow postpone or delay death. Usually, the negotiation for an extended life is made with a higher power in exchange for a reformed lifestyle. Psychologically, the individual is saying, "I understand I will die, but if I could just have more time..." - Depression—"I'm so sad, why bother with anything?"; "I'm going to die... What's the point?"; "I miss my loved one, why go on?"
During the fourth stage, the dying person begins to understand the certainty of death. Because of this, the individual may become silent, refuse visitors and spend much of the time crying and grieving. This process allows the dying person to disconnect from things of love and affection. It is not recommended to attempt to cheer up an individual who is in this stage. It is an important time for grieving that must be processed. - Acceptance—"It's going to be okay."; "I can't fight it, I may as well prepare for it."
In this last stage, the individual begins to come to terms with his mortality or that of his loved one.
Kübler-Ross originally applied these stages to people suffering from terminal illness, later to any form of catastrophic personal loss (job, income, freedom). This may also include significant life events such as the death of a loved one, divorce, drug addiction, the onset of a disease or chronic illness, an infertility diagnosis, as well many tragedies anddisasters."
Looking back I have really struggled with this "condition" working so hard to just make it go away. I realize now that it is not going to go away and I guess really what I wanted from the doctor is just someone who can recognize that it is a difficult problem, who is willing to help me when I need it. This doctor I saw yesterday, once I explained to him that I HAVE accepted that this will likely be a chronic illness, and my biggest fear/concern at this point is not having a doctor to help me with the symptoms.
There are times when I need pain meds, and antinausea and there may come a time that I need to have a procedure for the bleeding. I guess I just feel so much better knowing that I have a doctor for now who knows that this is a painful disease and is willing to help out where he can.
I have just had the most terrible night, had pizza for dinner last night, and bought come dark chocolate to have with dinner and was sick all night. So not sure if it was the cheese on the pizza, the chocolate, or if it was some of the veggies on the pizza, and we went over to Kelowna and I did not bring any of my nausea meds with me.
So lesson from that, I likely CANNOT eat chocolate at all, I need to take my meds wherever I go! AND it just seems to work better just to eat at home where I can cook all my own meals. Once I have my garden up and running that should not be a concern.
All my bedding plants that are all over my kitchen are about 2 inches high now, and I am really looking forward to having our acreage so I can plant them
I may need to get rid of the snow, to find a place to plant them, but doggonit, I may just do that.
OH and I just cannot say how much I love that I have been given another chance to be a doctor, I am just loving being a doctor, there was a time back at Eugene that I thought given the situation there that I might never get to practice medicine again, so I have been given another chance on SO MANY levels.
Life is great.
Lots of love to all.
Janet
jankenb @ gmail.com
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