My heart goes out to you, @annben

My situation is not current and very, very different from yours. My mother died due to leiomyosarcoma at age 67, much less than one year after her diagnosis when I was 27 years old, and it still aches sometimes for me at age 63. I have some friends my age whose parents still have "all their marbles," and live active, rewarding lives, and seeing their delight in each other can make me wish that my mother and I could have had that.

And, I am totally aware that her going before me was the natural order of events, whereas your loss is most definitely not. Again, my heart goes out to you. I know of two other people who have had rare sarcoma diagnoses. One in their teens who received early and aggressive treatment and survived 8 years, and one who lived 11 years through aggressive treatment and died at age 45. The quality of life for each of these beautiful people was significantly compromised the further their illness progressed and they ventured through treatments and clinical trials. Even when each had short periods when no cancer could be detected during one or more of their many regular PET scans, they each lived under the shadow of potential bad news and often felt isolated as a result. I have hoped that each of their contributions to oncology science have benefited others.

I'm so very, very sorry that your son had so little time, that he had to experience existential fear and endure pain, and that you had so very little time with him and the last of it may have been fraught with shock, fear, dread and seeing him facing the end of his life. I hope that his knowledge that he had a life-threatening illness allowed him even a tiny bit of time to notice the preciousness of all that he'd had so far, and gave him and your family members opportunities to express whatever you all needed to say and hear from each other. I know, from experience, that even with longer time available, that is not always a complete process...how can you ever ask all of the questions and say all that needs to be said out loud and heard? And, while in the initial frantic period of shock and attempting to access treatment, that's probably the last thing that one would consider doing. I'm so sorry.

With years of perspective and after much support and reflection, one way that I have coped with my losses has been to tell myself that my loved one's life here on this earth is over, which is tragic, but my love for them is not over and my part of the relationship can go on. I choose to continue to be in relationship with my mother...both who she was and who I was, warts and all, and with the mother she would have most wanted to be if life had been the most kind to her (and she was a wonderful mother), and the person I hope to become (the daughter that I would most want to be to her) as I move through mine.

One other way that I coped was by attending a grief education and support group that was hosted by a hospital in my area that was open to anyone needing support to process their loss ( I found it in the yellow pages on the work desk that my head landed on when I felt I just could not keep going forward, about three months after her death). My shock was beginning to wear off a little and the pain was difficult to tolerate.

The group was not specific to diagnosis. It was skillfully led. Some people did not come to the group until decades after their loss; some had just managed. Some had spent years bracing against the pain through drinking, over-work, diving in to the TV, etc. What that taught me was that we were all shocked when the end came and sometimes long after. As many lost their loved ones through long, protracted good-byes as lost their loved ones suddenly, due to accidents, suicide or more like the case of your son. Those of us who had had more time to say good-bye carried scars from witnessing our loved ones' suffering, deterioration and shrinking definitions of hope. Those who lost someone in the blink of an eye envied those of us who could take time to say what was needed and had the luxury of being with and caring for our loved ones throughout their illness and dying process. They would have savored an opportunity to care for their loved one's weakening and aching body, even after they could not sustain communication. We who had had that luxury could wish that our losses had been over "like that" so that we would have been spared the drawn-out experiences of dread and witnessing our loved ones' suffering. What I am saying is that you may find great comfort in speaking with others whose loved ones' illnesses, treatments and experiences were more similar to that of your son's and yours. Here seems to be one of the best places to find that, and I hope you do. And, you may find that grieving along with others whose experience is different from yours brings a kind of comforting perspective, if not relief.

I will keep you in my thoughts, @annben . I hope you find all the kinds of support that you need in order to process what has happened to your son and to you, in ways that help you to carry on to whatever extend possible, for now, and to eventually find ways to carry your grief while also finding a new normal, with moments and waves of grief interspersed with moments of peace and even joy.

Sincerely,

@gynosaur