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  • Finally a start to radiation therapy.

    Posted by Julie on June 14, 2008 at 4:04 am

    This has been a difficult week. I am experiencing a lot of tears, anxiety and anger. Most of it aimed at Radiation Oncology. I phoned again yesterday and the plan was done, the Doctor had signed off but some body from Physics had to approve it. Today was day 15 when they had said 10 days (working) so really 3 weeks. All I could think of is how much is this thing spreading with the delay in getting started. I told Dick I had reached the limits of my patience. Finally this afternoon they phoned to say he can start Monday. When he asked how many sessions he was told they didn’t know. The paperwork implies we will get a plan that states how many sessions at what setting etc. We did not get any of that. I am the kind of person who needs to know what is going on and why. They have left us totally in the dark and I am very upset about it. To deny care is the emotional equivalent of pulling a weapon on someone.

    My knee is hurting and i have not had that before. This has been going on a couple of weeks and Tylenol and Ibuprofen don’t fully control it. I phoned to get an appointment with an orthopedic specialist and it will be 2 weeks. This does not help my mood. Plus we arrive at the eye clinic for Dick to get a visual field test in preparation for seeing the eye doctor today to find out they have no record of an appointment for him. They do check the records and the Doctors notes say that he is to have a June appointment. I am holding my head and tearing up because I am so angry. I am one of those people who cry when angry more than when I’m depressed. Now I’m both. I didn’t lose it then just when I spoke with Radiation Oncology later that day. Miraculously they could do the test and the Dr. had a cancelation so everything worked out but by then the emotional damage to us had been done. The good news is his eye pressures are 11 and 13 so he won’t need to have eye drops and will have a recheck in 3 months.

    Today was the echocardiogram and the technician told us that his heart looked good. We still have the mystery of the severe increase in edema but it doesn’t seem to be congestive heart failure. This afternoon was a test by the respiratory therapist to determine if he can use a appliance on his new oxygen tank that will just deliver oxygen when he breathes in. This will double the time the tank will last when we are out. It has taken all week to get the oxygen equipment the way he needs it to be.

    Yesterday I came down with an terrible stomach ache and middle of the night diarrhea. So I start worrying about what will we do if something takes me out of action. Last summer I had to have my colon out when Dick was in really bad shape and couldn’t see. At least this year he has vision thanks to the cataract surgery. I just hope it isn’t a bug that I can pass on to Dick. I still feel strung out and on edge. Dick is not taking his insulin when he should and I yelled at him tonight that he had to take responsibility for his insulin. He just agreed with me. So we didn’t even have a fight. We’ll see if he can, if not, I will have to add that to the list of things I have to keep track of. Thanks for reading this far if you did. Julie


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    Maria replied 16 years, 8 months ago 4 Members · 6 Replies
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  • maria's avatar

    maria

    Member
    June 15, 2008 at 3:38 am

    Thinking about you Julie, you certainly have a lot to deal with and coordinate, I can understand your frustrations. You certainly have to be your husband’s advocate and liaising with all the docs and sorting appointments is a full time job in itself. I am like you I cry when I get angry out of sheer frustration of peoples obvious stupidity at times. Best wishes for Dick, hope he gets some relief from the radiation treatments.
    ((((((hugs to you))))))))

  • julie's avatar

    julie

    Member
    June 14, 2008 at 7:24 pm

    Karen, they did the mapping 3 weeks ago during a simulation and put in 3 tattoos, no worries about magic marker.
    So as far as I know the rest is calculation and paper work. I think if this was one incident i could write it off but the whole University of Arizona medical complex is like this. It is one of the biggest bureaucratic messes I’ve seen. Since my husband worked for the State of Wisconsin and I worked for the City of Madison and a public mental health system I have seen too many bureaucracies. I have seen systems that have worked very well so I know it can be done. I want to pick them all up and shake them like a mama cat.

    I checked with the Doctors regarding the most recent med changes and the primary care Doctor has gone over the whole list several times. It is in the 100’s around here now so perhaps it is the addition of heat.
    Today he is staying in bed with his feet up. Julie


    Volunteer Coordinator
    ABLSC

  • momof4's avatar

    momof4

    Member
    June 14, 2008 at 3:30 pm

    Julie,

    I was asking Angelo some questions for you this morning…Regarding the radiation…he says that Dick should feel some relief within the first week of treatment. As far as the schedule of radiation…The best guess would be 10 or more treatments…They are usually scheduled for the same time everyday, on the same machine, with the same technicians, and they are consecutive. The first day he will be “Mapped”…they will use prior scans, and x-rays to line up where the radiation beams will go. They will mark him (with a magic marker), you will need to avoid any ben-gay, or other such rubs for the duration of the radiation…Angelo had absolutely no side effects.

    As far as the person who called to give you the appointment time…they were most likely just a scheduler…they wouldn’t have more information than the time Dick needed to arrive for the first appointment, so don’t get discouraged about that.

    Water Retention…go over all of his meds, and also call the pharmacist, it could be something as simple as a side effect from a medication…I would start there…

    Is he on a sliding scale insulin?

    If you need to talk please let me know…

    As for you, stress is what is causing your problems I am sure, as they are very similar to bouts I have had myself…take it slow…you can only control what you are in control of…

    The urgency we feel is rarely shared by others, and that is soooooo frustrating!

    Thinking and praying for you both,
    Karen


    Caregiver for my Wonderful Husband Angelo, who has Metastatic Bladder Cancer.

    Life isn’t about how to survive the storm, but how to dance in the rain.

  • 's avatar

    Guest
    June 14, 2008 at 1:58 pm

    Julie I don’t blame you for being mad it seems to me they had more then enough time to come up with a treatment plan and not keep you in the dark like this. When they did finally call you they should of had an idea of how many sessions he would need seems to me. I am also like that I want answers and don’t like being put off.
    Also my wife was complaining about her knee so she went to an Ortho finally you see she is a nurse and they don’t need Dr’s lol. Well here it turned out she had a torn ligament in her left knee and they put her on on naperson and see what that does or she will need surgery. I hope things get better for you two. And when you get time I would get your knee checked out so you know what’s going on there. Joe ;)

  • julie's avatar

    julie

    Member
    June 14, 2008 at 6:40 am

    Pat, I expect your right about the person just transmitting the message. I just feel so disrespected by the whole lack of communication from them.
    No tomatoes for a few weeks here. I think it might be a virus. Dick has complained of no appetite and we know that narcotics really slow down the gut.
    His Primary Care Physician explained that there are several different causes for edema. The first thing they look at is there congestive heart failure. We think some of it is related to impaired kidneys due to diabetes, some due to his obesity impairing the lymph circulation in his legs, also his anemia can make his blood vessels leaky. Ordinarily they would increase the diuretic some more but they have to be careful of the kidneys. Mysteriously his insulin needs have dropped. He had low blood sugar 5 mornings in a row.

    I wonder how long it will take for the radiation to have an effect. If it isn’t soon he will need an increase in the Fentanyl.
    Yes his primary and pulmonologist both indicate the mail box is the last thing that gets looked at. Now we have the email address I feel we will have better communication.

    I think a red ribbon will do as it is in the 100s here these days.
    A hug is always welcome. Thanks, Julie


    Volunteer Coordinator
    ABLSC
  • 's avatar

    Guest
    June 14, 2008 at 4:47 am

    Its really piling up isn’t it Julie…i’m so sorry.
    I hope you haven’t eaten any round or roma tomatos….i’m sure you know they are on recall except from certain areas…that could cause your outbreak of stomach pain and diarhea.
    Hopefully by Monday when you go in they will have the plan..i’m sure the person that talked to you was just relaying information and on the lower end of the pay scale.
    Good news on the eyes and heart.
    I hope they find the cause of the edema.I read that abnormal removal of interstitial fluid can be caused by obstruction of the lymphatic system, for example due to pressure from a cancer or enlarged lymph nodes or destruction of lymph vessels by radiotherapy if he’s had that? I read somewhere here?? that massage therapy can help with it…i wish i could find the post.
    It would be nice if you could find someone to be “Head Coach” wouldn’t it? I tried to do that with my Primary Care Physician but he kept dropping the ball. Its so very difficult to get all these specialists to communicate with each other. I do have everything sent to my Primary Care doctor but seriously i doubt if he goes any further than putting it in my folder.
    I hope you feel a little better tomorrow….wear your red hat to bed….
    a hug from me if that helps………Pat

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