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Thread: Anger

  1. #1
    Regular User
    Join Date
    Jun 2017
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    Angry Anger

    Hey all,

    I wish I had a more positive emotional breakthrough to post about but here I am. Sorry in advance.

    I'm pissed. Pissed at a lot of things and people and circumstances.

    I'm angry at my mother's GP who, for years, constantly poo poo'd her request for the most routine blood test and all of her health concerns. I'm angry at the walk in clinic physician who told her she had pneumonia and sent her on her way.

    I'm angry at the oncology department in our city who never seemed to know what the other was doing. The teams never seemed to communicate. I'm angry they weren't on top of her nutrition. I'm angry that they suggested a trial treatment, maybe if she had pursued regular chemo she would still be here.

    I'm angry at my parents for not letting me be a part of this journey and "protecting me". Maybe if I was more informed I could have been a better advocate for her and gotten her better care. I'm angry that they didn't let me come home sooner and spend more time with mom before she was gone.

    I'm angry at mom for thinking she had more time. For not writing us the letters she said she wanted to. For never having those "final conversations". For allowing her coherency to slip away before she said the things she wanted to say.. before I said the things I wanted to say.

    I'm angry at myself for not being more assertive in coming home to spend time with her, despite their wishes.

    I'm angry at everyone that still have their mothers.

    I'm angry that I can't change any of this.. that I can't seem to wrap my head around the fact that she's really gone. That it still doesn't feel real when I look at photos of her.

    Last edited by lunalight; 01-24-2018 at 01:29 AM.
    Wake up
    Do good
    Repeat

  2. #2
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,310
    You have many reasons to be angry - but are they good reasons? Anger is best reserved for something that we can change, oppose, influence or stop. The past is gone, like my father, mother and only sibling. Yet, I am not angry, instead choosing to appreciate the gift of life that I am blessed with. Anger is a part of the grieving process and it is a process - meaning that your anger should abate as you work through this and move on with your life. Easy to say, hard to do, but I would not allow anger over loss to paralyze your life.

    A grief counselor or even a psychologist might be very beneficial to you. If you hold any other belief syste, speaking with an authority or representative of it may very well help. Just understand that anger is intended to be temporary, i.e. limited in time, and it should resolve as you move on. If it does not, or too slowly, seek some help. That's my advice.
    05/08-07/08 Tumor appears behind left ear. Followed by serial medical incompetence on the parts of PCP, veteran oncologist and pathologist (misdiagnosis via non-diagnosis). Providential guidance to proper care at an NCI designated comprehensive cancer center.
    07/08 Age 56 DX 1) Peripheral T-Cell Lymphoma-Not Otherwise Specified. Stage IV-B, >50 ("innumerable") tumors, bone marrow involvement.
    08/08-12/08 Four cycles CHOEP14 + four cycles GND (Cyclofosfamide, Doxorubicin, Vincristine, Etoposide, Prednisone & Gemcitabine, Navelbine, Doxil)
    02/09 2) Relapse.
    03/09-06/13 Clinical trial of Romidepsin > long-term study. NED for 64 twenty-eight day cycles, dose tapered.
    07/13 3) Relapse, 4) Suspected Mutation.
    08/13-02/14 Romidepsin increased, stopped for lack of response. Watch & Wait.
    09/14 Relapse/Progression. Visible cervical nodes appear within 4 days of being checked clear.
    10/06/14 One cycle Belinostat. Discontinued to enter second clinical trial.
    10/25/14 Clinical trial of Alisertib/Failed - Progression.
    01/12/15 Belinostat resumed/Failed - Progression. 02/23/15
    02/24/15 Pralatrexate/Failed - Progression. 04/17/15
    04/15 Genomic profiling reveals mutation into PTCL-NOS + AngioImmunoblastic T-Cell Lymphoma. Stage IV-B a second time. Two dozen tumors + small intestine (Ileum) involvement.
    04/22/15 TEC (Bendamustine, Etoposide, Carboplatin). Full response in two cycles. PET/CT both clear. Third cycle followed.
    06/15-07/15 Transplant preparation (X-rays, spinal taps, BMB, blood test, MUGA scan, lung function, CMV screening, C-Diff testing etc. etc. etc.) Intrathecal Methotrexate during spinal tap.
    BMB reveals 5) 26% blast cells of 20q Deletion Myelodysplastic Syndrome MDS), a bone marrow cancer and precursor to Acute Myeloid Leukemia.
    07/11-12/15 Cyclofosfamide + Fludarabine conditioning regimen.
    07/16/15 Total Body Irradiation.
    07/17/15 Moderate intensity Haploidentical Allogeneic Stem Cell Transplant receiving my son's peripheral blood stem cells.
    07/21-22/15 Triple dose Cyclofosfamide + Mesna, followed by immunosuppressants Tacrolimus and Mycophenolate Mofetil.
    07/23-08/03/15 Marrow producing zero blood cells. Fever. Hospitalized two weeks.
    08/04/15 Engraftment occurs, and blood cells are measurable - released from hospital.
    08/13/15 Day 26 - Marrow is 100% donor cells. Platelets climbing steadily, red cells follow.
    09/21/15 Acute skin Graft versus Host Disease arrives.
    DEXA scan reveals Osteoporosis.
    09/26/-11/03/15 Prednisone to control skin GvHD.
    11/2015 Acute GvHD re-classified to Chronic Graft versus Host Disease.
    05/2016 Tacrolimus stopped. Prednisone from 30-90mg daily tried. Sirolimus begun. Narrow-band UV-B therapy started, but discontinued for lack of response. One treatment of P-UVAreceived, but halted due to medication reaction.
    09/16/16 Three skin punch biopsies.
    11/04/16 GvHD clinical trial of Ofatumumab (Arzerra) + Prednisone + Methylprednisolone begun.
    12/16 Type II Diabetes, Hypertension - both treatment-related.
    05/17 Extracorporeal Photopheresis (ECP) begun in attempt to control chronic Graft-versus-Host-Disease (cGvHD. 8 year old Power Port removed and replaced with Vortex (Smart) Port for ECP.
    05/2017 Chronic anemia (low hematocrit). Chronic kidney disease. Cataracts from radiation and steroids.
    06/17 Trying various antibiotics in a search for tolerable prophylaxis.
    08/17 Bone marrow biopsy reveals the presence of 2% cells with 20q Deletion Myelodysplastic Syndrome, considered to be Minimum Residual Disease.
    12/17 Bone marrow biopsy reveals no abnormalities in the marrow - MDS eradicated. The steroid taper continues.
    01/18 Consented for Kadmon clinical trial.
    03/18 Began 400mg daily of KD025, a rho-Associated Coiled-coil Kinase 2 Inhibitor (ROCK2).
    09/18 Due to refractory GvHD, Extracorporeal Photopheresis halted after 15 months ue to lack of additional benefit.
    10/18 I was withdrawn from the Kadmon KD025 clinical trial due to increasing fatigue/lack of benefit.
    11/18 Began therapy with Ruxolitinib (Jakafi), a JAK 1&2 inhibitor class drug. Started at half-dose due to concerns with drug interactions.

    To date: 1 cancer, relapse, second relapse/mutation into 2 cancers, then 3 cancers simultaneously, 20 chemotherapy/GVHD drugs in 11 regimens (4 of them at least twice), 5 salvage regimens, 4 clinical trials, 5 post-transplant immuno-suppressant/modulatory drugs, the equivalent of 1,000 years of background radiation from 40+ CT series scans and about 24 PET scans.
    Both lymphoid and myeloid malignancies lend a certain symmetry to the hematological journey.

    Believing in the redemptive value of suffering makes all the difference.

  3. #3
    Senior User
    Join Date
    Dec 2012
    Posts
    303
    Many of us 'met' a Lunalight here and developed a link.
    We are all sorry for your loss.
    You have, as they say; "Been up the river and cross the bridge." AND you've learned of your strength along the way.
    You should know that anger is a handmaiden to loss. Po's right, burn the anger out if you can, and get help if you need it.
    Personally, I just cried my anger out when my 32 year old son died. It's OK to be a mess for a while.
    In the meantime:
    "Wake up
    Do good (for yourself and your Dad)
    Repeat and Repeat and Repeat"

    Regards to you and your,
    "Hug your DAD"
    zim

 

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