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Thread: 26 and alone

  1. #1
    Newbie New User
    Join Date
    Apr 2019

    26 and alone

    Hi, this is my first time posting to the forum.
    I am in a vulnerable place right now, so if you have anything mean to say, please don't.

    I just turned 26 last January.
    The previous January, my mum died of cancer aged 57.
    It has been, and still is, the worst period of my life.

    She was originally diagnosed when I was 17/18 with breast cancer, which we thought was curable.
    It turned out my parents were keeping things from us and it was a lot more serious than the kids could imagine.

    Whilst I love my parents and appreciate everything they do for me, I felt like I could not depend on them for emotional support.
    I think this might be something to do with how they were parented - I don't know if either truly received the love they deserved as kids - but I'll never know the full extent of it.

    Anyway - a lot of my teens and early twenties were spent guessing what was going on and with that added strain and paving my own path, I ended up having a very fraught relationship with them.
    Around the summer of 2017 I was living away from my parents when I had a sixth sense that something wasn't right with mum's cancer, so I moved back in. Sure enough, in the September in became terminal. Words cannot describe how harrowing the whole experience was. I watch my mum suffer unbearable pain, and die slowly from the shit healthcare system in Ireland. I worked 9-5, came home, did what I could to care for her, got up a 6 am , did the same thing all over again, every day for months.
    Eventually my poor mum died on 9 Jan 2018, thankfully in a beautiful hospice. I will never be grateful enough for that.

    Whilst my Mum's death was unbearable, everything else that happened afterwards completely shocked me.
    My boyfriend of 6 years abandoned me - we had been having issues, but what he put me through after my mum died I will never forgive him for.
    People who used to call all the time never do anymore.
    My Dad had a new girlfriend within the first 6 months.
    One good thing did happen - I met my beautiful now current boyfriend, who is a blessing in my life.

    BTW I have a sister who is just turned 17 and my brother is 24. My brother does not live with us so the care for my sister is mainly on me.
    Let me start by saying - it is my pride and joy to be there for her - she is like a best friend to me.
    What really broke my heart is how my 57 year old Dad has been behaving.
    It started out with him spending a lot of time with a 'friend' who I knew was not just a friend.
    Then it progressed to him becoming gradually more and more distant, to staying out late at night and leaving his teenage daughter alone for extended periods at night or during the day. My sister is currently quite isolated because of where she goes to school, so this is a very lonely experience.
    Even on occasions when she begged him to stay at home, he left anyway.
    We confronted him about this, which ended up in a very one sided argument of him doing the best thing for himself, that my sister is 17 and can take care of herself and basically him rejecting any help that he can get. Oh, and he refuses to acknowledge that he is grieving, he says he did that all a long time ago.

    As I mentioned before - I never really got the emotional support that I wanted from my parents. This is what has made this experience all the more difficult.
    I essentially feel that I have become a parent at 26, and my emotional burdens are too much for other people to bear. Older Adults who I would have thought would check in on me or look after me have literally run away. I feel like I have never had that adult figure in my life to look after me, or who would know if I am going through a rough patch, and it is sorely sorely missed.

    I feel like I am that strong rock for everyone, when really , on the inside, I am dying of sadness.
    I have an excellent counselor, but really it could never make up for all the time missed in between that I could have had an adult, or a parent, who would have helped me during this period of devastation.

    I have never really met anyone in this exact situation, so even knowing that there is anyone else at my age going through this would really help.

    Thanks guys

  2. #2
    Sometimes we have to do what we don't think is possible and it sounds that you are in that situation. I'm glad you have a job and it sounds like a boy friend and a sister. She is so lucky to have you to help her through this time. If she isn't nurtured by her dad it sounds like you are offering her support. Truthfully, I have seen many situations where a person looses his wife and very soon he finds another person. Sorry it is happening in your family but it seems to be a pattern. All I can say is that you are a blessing to your sister and I hope you keep her close to you emotionally. Hugs.
    Female ,age 70, Diagnosed Jan 2010
    Primary CNS DLBCNHL
    Treatment every 6 weeks with High dose MTX and Rituxan for 9 months.
    Tumors shrunk and one was gone in 4 months and the larger one left some brain damage but has not become active as shown on MRI since Aug 2010.
    Since 2012 monthly Rituxan
    High Dose MTX and MRI every 4 months.
    June 6, 2014 NED
    No more chemo 6/2014

  3. #3
    Super Moderator Top User Baz10's Avatar
    Join Date
    May 2011
    Firstly in many years on here I have never come across anyone posting mean comments.
    If they did, they would be history very, very quickly.

    We are here to support and help however we can, we are non judgmental and take all posts as genuine, unless we are proved wrong.

    You've it seems had a tough time, yet frankly without knowing the personalities involved it is simply not possible to make comments, anyway as said we are not judgemental.

    Being considerably older, ancient is possibly correct, my advice for what it is worth is;
    You cannot change history, yet you are in a seemingly good relationship and with both sisters support as well as your boyfriend, you can influence you’re future putting the previous bad aspects behind you and learn to live the life you desire and indeed need as do we all.
    From what you say, you have a resilient determined attitude and as such
    You can make this happen as long as you do not allow the past to interfere with your future.
    Good luck young lady and go an try to live life to the full.
    Diagnosed stage 3 March 011
    Radical resection April 011
    Restaged 2b April 011.
    12/09 Colonoscopy clear but picked up hospital infection.
    Aorta & femoral arteries occluded.
    Clot buster drugs put me in ICU with internal bleeding. 9 blood units later they got it under control.
    Aortobifemoral surgery 5th May. yughh.
    PET scan indicates clear
    DEXA bone scan clear
    13/5 CT showed "unknown" but no concern from docs.
    Inguinal lymph nodes and severe groin pain.
    Ultrasound and MRI show no nasties. Pheww
    Groin pain and enlarged lymph nodes still there.
    October -still the same pains but under semi control.
    Additional chest CT scan ordered for 11th November prior to surgery.
    Sinus surgery done and dusted.
    July 2014 PSA at 5.10. 2months of antibiotics in case of UTI, jan 2015 PSA at 7.20, 23/08 now 8.2, current 8.1
    Prostate Cancer confirmed Gleason 3+Marginal 4.
    Active surveillance continues.
    PET CT Aug 2017 indicated lung nodule changes
    CT Guided biopsy 7/09
    November 1 Vats Wedge section pathology Glomulated previous infection
    no Cancer.

    Not all's rosy in the garden, but see following.
    Stop grumbling Baz, your still alive and kicking so far.
    Age and illness doesn't define who we are, but more what we are able to do.
    Do what I love doing, when I can until I can't.
    and dodging bullets in the meanwhile, too many bullets at moment.

  4. #4
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Quote Originally Posted by Evee View Post
    Hi, this is my first time posting to the forum.
    I am in a vulnerable place right now, so if you have anything mean to say, please don't. Thanks guys <3
    Perhaps drastically different from other internet venues, this forum is vigilantly moderated. We do not do mean here. We support. Meanness is deleted and or the user banned.
    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.


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