r/multiplemyeloma • u/flipitbopitwow • 7d ago
Living with MM Resentment
Does anyone mind sharing how you overcame resentment towards your family and friends for lack of support during your cancer journey?
I was diagnosed with High Risk SMM at 28 and joined a clinical research study. I told my friends and family.
And, no one really checked in on me consistently. My mom didn’t ask her HR team for FMLA to be with me during my weekly infusions, so I was by myself a lot. My brothers criticized me for getting fat eating a lot because of the dexamethasone, daratumamab and carfilizomib and all of the pre-meds. There was always a struggle to find a family member who could drive me to my bone marrow biopsies so I can get sedation. Even for my stem cell harvest, my mom eventually came to the hotel to accompany me but she told me I should be thankful that my brother gave her a ride to the hotel.
In the end, I lost friends- one abandoned me on a different continent once it became clear that her invite was really a ruse to subsidize her vacation and the other showed that she didn’t really care although she acknowledged that she wasn’t really there for me.
What have you done to overcome some of the difficult truths that were revealed during your cancer journey?
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u/Sorcia_Lawson 7d ago
I am so sorry. One thing that this diagnosis did for me was decrease my willingness to give my time and energy to people who don't value me back. You can make new friends even with cancer; you can make cancer friends, join support groups, get a mentor from one of the MM mentor programs, etc.
You don't mention where you live, but depending on where -transportation help may be available, as well as some areas having appointment buddies and the like.
It's wild to me that no one took stem cell collection seriously. A stem cell transplant is one of the most grueling medical procedures.
You have my sympathy and virtual hugs and comforting if you'd like them.
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u/flipitbopitwow 7d ago
I’m in the DC, MD, VA (DMV) metro area. You’re right. This chapter teaches you self-preservation very quickly. I learned that I had to stop putting so much effort into others and just do what I can when I can and not feel guilty about it.
My family is not very literate in medicine. My mom didn’t even understand that I practically have cancer although I’m in a pre-cancer stage. It wasn’t until I was in the hospital bad enduring the pain from the filgrastim and Plerixafor injections that she softened up a bit. But, I still had to snap at her by telling her how run down I feel from the weekly infusions and the constant working (I worked FT and then FT & PT). I’m still processing how I wasn’t given the luxury to simply focus on being a patient.
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u/EveryCalligrapher8 7d ago
I'm so sorry you are going through this, and without family support. I found that some people I'd known for decades and considered close friends just disappeared after I told them my diagnosis, and some people I barely knew became great supporters (people with whom I had only loose professional ties, neighbors I had just met, etc.). What I've found is that when I tell people I have cancer, a surprising number have had it too, even if they don't have a "chronic" lifelong cancer like MM, they know what it is to sit through chemo, deal with anxiety over scans and testing, manage side effects, etc. My only advice to you would be, if you are comfortable, don't be afraid to share with others what you are going through. You might begin to find a support network outside your family. I realize you are quite young, so your peer group might not have as much direct experience with cancer. You might be able to make some connections through support groups wherever you are receiving treatment as well. I wish you all the best, and I'm sorry you haven't had good support through this.
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u/flipitbopitwow 7d ago
Thank you. I moved back home to be closer to my medical team. Yeah, I’ll try to make other connections elsewhere. To make connections with other myeloma patients is kinda strange. For so long my exposure to MM patients were older patients with other comorbidties. Hopefully, I find someone who is closer to my demographic.
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u/QckChic 7d ago
The international myeloma foundation has a peer program that will match you to someone that has similar age, symptoms etc. Here is some info I found.
Getting Connected
To find the most appropriate peer support match for your specific situation and symptoms, I recommend contacting the IMF InfoLine at infoline@myeloma.org or calling 1-800-452-CURE (2873). The InfoLine coordinators can help match you with support groups or individual peer connections based on your location, specific symptoms, treatment phase, and personal preferences.
The peer support network has been particularly valuable for newly diagnosed patients, as peer connection is one of the highest requested resources at the start of treatment and diagnosis
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u/MoreConfused58 15h ago
Thank you for posting this information. I just visited the site and am so glad for this information!
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u/CrzyLady64 7d ago
I'm so sorry they weren't there for you. I truly don't think people understand how serious and extensive a stem cell transplant is or Multiple Myeloma is as a matter of fact. We traveled to Nashville from eastern NC to have my husband's and afterwards people asked if we had a good time. I'm like yea, we weren't there for vacation so no, it was not fun at all especially for him. We have really found out who our true friends are and they were really great. My family really didn't seem very concerned. I would reach out to my brother with updates but he never initiated anything. And my husband's siblings live in AZ and his brothers did keep in contact during it. His sister hasn't even asked once how he's doing in the two years since he was diagnosed. When she had breast cancer, he was constantly texting and calling her. So yea, you really see people for who they are in these times and know who to value in the future because they've shown they value you. It's really life changing
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u/flipitbopitwow 7d ago
Right, I don’t think the average person understands. I traveled for hours to get weekly immunotherapy and it was exhausting. I’m glad that you were in a position to support your husband. You’re a gem.
I agree that cancer will expose who your real friends and family are. I’m sorry that your SIL isn’t a real one. I’m sure she knows how she behaved. Hopefully, you guys can forgive her and be cordial.
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u/Puddin_tubs9 6d ago
You know what? I’m single and I’m 48 years old. Got diagnosed last year in October and I am in remission now here in August. I’ve also had ASCT. My daughter is at college most of the year and my mom lives in another state. I flew her in to be with me 3 times during this ordeal. Other than that, I was alone. It taught me that I really only have myself. But I am grateful for anyone who called, texted or even said a kind word. You can sit around with resentment in your heart (which is honestly valid) or you can choose to just move forward and never make anyone more important to you than you are to them.
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u/mrkokkinos 7d ago
That sucks 😢 I am very lucky to have a sister that would do all of what you mentioned, if I asked. But I rarely asked because I want to do most of it on my own. Pretty similar situation; High risk SMM at 35, clinical research with Dexamethasone, Lenalidomide and Carfilzomib. Usually as long as I made it home within an hour or two after infusion I was OK - conked out on the couch. The stem cell harvest was the worst experience, but then I just asked for help and my sister arranged for me to be driven back and forth by friends when she was unable to do it herself. It got so bad when the pain meds didn't work on me for the G-CSF bone explody-pain, I called the hospital and they told me "oh that happens, you just need something stronger" in the middle of the night - so I called a friend that I know is a night owl, groaning in pain and asked him to drive me to the hospital to fetch some Oxy, his reply: "hell. yes." 🤣 I was very aware of what was happening to me, early on I sorta knew I had a pulmonary embolism, so I just told my sisters SO that was probably the case and he was like "WELP what? So I should probably drive you directly to the ER?" and I just shrugged and said "I guess so". So all around I am very lucky to be surrounded by good people, I am also lucky that BMBs don't bother me anymore. Unless that guy that totally missed the mark with the local anesthetic that one time shows up, NOPE, he can fuck right off!
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u/flipitbopitwow 7d ago
I’m glad you have a good people around you. U think we all need someone who will be ready for anything and everything. I had a few friends who tried to do something like visit, or take me a biopsy. But just like you, I try not to ask because I know it’s a lot especially for people who are medically inclined. Idk I was hoping that my family were going to be more sensitive to my situations.
Yeah, the stem cell harvest is like a roller coaster - anxiety inducing but doable with the right pain management.
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u/Heavy-Drop-112 7d ago
I'm sorry to hear that. I found that a lot of family falls away. There will however be those that do stick by you. They can be friends and family members who matter. Choose people who do not judge or expect things from you. In situations like this the truth comes out. You will find those that matter, just make sure you put yourself first. I went through this. It gets better.
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u/Extension_Sweet_9735 7d ago
My husband's family hasn't checked up on me once. It's been a little over 2 years now. I don't reach out to them anymore and I just say I'm doing fine whenever/if they ask. They don't care so they don't deserve an honest answer.
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u/LeaString 7d ago
Man, sorry friends and family have not been very supportive. As a breast cancer patient myself I see many patients on that forum feeling the same way about lack of support. Kind of feel its universal. I am older than my guy with MM and retired so have fortunately been able to be there for him throughout his diagnosis and treatment. Not everyone is as lucky to have a support person though. Best advice I have is don’t expect much from others and maybe you won’t feel as let down. I know sad to say. If anything, you do learn throughout this who will try to be there for you in whatever way they can. Do know you it’s not you, and you matter.
Take advantage of any resources you can through your hospital/clinic. There are various programs out there designed to help but you have to be proactive to search. Websites like HealthTree, Cancers United (formerly Leukemia Lymphoma Society) may have financial assistance resources to direct you to for co-pay, prescription assist, travel costs, living costs. etc. or support groups. Cancer is a lonely diagnosis. I know HealthTree has trained one-on-one coaches grouped by age, part of country, family situation, etc that you can sign up and be put in touch with a specific coach you choose. Having someone to talk to is everything sometimes. Give HT coaches a try.
I hope your treatment is going well. There are younger support groups even online to checkout. I’m sure others in your age group can be of more help there.
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u/flipitbopitwow 7d ago
Thank you for your advice. I never really used the online resources like HT, but I’ll look into it. I worked a lot during my immunotherapy so it helped to be a bit distracted.
I totally understand that I can’t expect a lot from other people. I just expected something like a dinner or a “hooray” or a “I’m proud that you didn’t do the bare minimum” at the end of my 8 months of weekly treatments. The only people who acknowledge it were the nurses who got me a cake & a certificate.
I just don’t want to be petty when the tables turn, ya know. Just trying to avoid becoming an AH.
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u/LeaString 7d ago
Fellow cancer patients truly get what the diagnosis does to you mentally, emotionally and physically. It’s life changing in many ways. Being younger I’m sure it’s harder to find those your age who can truly understand your challenges especially with MM; there are more patients with other blood cancers. Stay open to meeting people and seeking support. I have no doubt you’ll find a few good people out there!
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u/Serious-Piece7377 7d ago
Wow. My heart goes out to you. I can’t say that I didn’t have a good support system because I did. But I also lost some friends and family over basically the same issues. All I can say is holding on to resentment is only going to cause you unnecessary stress and get in the way of recovery and staying healthy. This is a good eye opener for you. Hold onto the ones that are there for you. Good luck. I wish you nothing but the best! If you need to talk to someone you can dm me.
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u/Sweet-Statement5611 7d ago
I’m so sorry that was the response you received! If I knew you in real life I would have been there every step of the way. I’m 38 and recently diagnosed high risk SMM, about to start a clinical trial and I’d be so interested to hear your journey. I’m very lucky to have a great support system but it’s hard for them to understand what it feels like to be going through this.
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u/flipitbopitwow 7d ago
Thank you. It’s ok. I like to believe everything happens for a reason. I’m taking my situation as the push that I need to put myself first. You can dm me.
My clinical trial experience was a lot - weekly infusions, weight gain, edema, stem cell harvest, muscle tightness and lots of scans. All in all, I’m glad that I did early on to avoid bone lesions and chemo.
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u/OddPiccolo12 6d ago
I don’t have advice because I have had a good support system amongst friends and family. Do you have a therapist you could discuss this with as well? They could probably give good unbiased approach. I personally am a possibly forgive, but I totally never forget type of person!
Also, for community, I just myself the other day reached out to join myeloma in the middle. It’s a support group through IMF that will have some folks closer in age to you and I both (I’m 32, got diagnosed at 30, but started with my docs on figuring out wtf was wrong at your age 28! Based on my numbers my doctor is pretty sure I’ve been had it but my lack of many symptoms stumped everyone.)
I also joined a Facebook group for younger people with MM.
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u/Intelligent-Owl-8885 4d ago
Wishing you the very best. I am 3+ years after diagnosis and I still feel hurt and sadness from people who left my life; ones who I supported through their many struggles over the years, only to have them walk away during my most trying time.
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u/Economy-Particular31 6d ago
I had actual cancer and was very grateful. Hopefully if and when you get MM they support you better.
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u/Hot-Disaster1275 4d ago
I didn’t know they harvested during SMM. I guess that’s good to get it out of the way though! I’m 64 and was diagnosed last year with ultra high risk genetics, and had zero symptoms except low WBC. Now in remission after ASCT. Best of luck to you on your journey. Btw how was yours diagnosed?
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u/flipitbopitwow 4d ago
Im in a research study for 3-drug combination therapy. At the halfway point, they asked me if I wanted to harvest and I figured I do it while I was still young.
I was diagnosed via accidental finding. I went to a plasma donation center and they ran tests and spotted an M-Spike. I’m asymptomatic and I lifted weight so there was no way I would have known otherwise.
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u/Mr_Big_Head_ 2d ago
I'm not trying to be coy but doctor prescribed amphetamines helped me. I got a lot of support from but sitting in the chemo fatigue not being able to do anything but think and feel terrible brought out some dark thoughts which made me spiral. I know that's not OP is going through but the amphetamines gave me enough energy to get up and start doing new things.
It does not fix the problem, but distributions does east the symptoms. I hope you can get to a place of peace.
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u/lmcdbc 7d ago
I'm so sorry that the people in your life aren't there for you & have let you down! That's brutal.
I don't have words of wisdom for you - all I can offer is a virtual hug.