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    Community Voices


    Following CT scans that my GP/MD organised for me; blood tests and a consult with my haematology specialist last week, I can reveal I've now passed the three year mark as far as my remission is concerned. I was diagnosed with High Grade B Cell (non) Hodgkin's lymphoma in September 2018. This was considered to be a relapse from lymphoma I had in 1992.
    I will continue to have six monthly check-ups and I think annual CT scans. I'm allowing myself to become a little excited despite my my complex mental health issues issues! I'm on track to pass the golden 5 year mark, when 50% of lymphoma patients are considered to be cured.

    3 people are talking about this
    Community Voices

    During trestment

    <p>During trestment</p>
    Community Voices
    Community Voices

    When Caretaking With MS Takes It’s Pound of Flesh

    It has been seven months now while on this journey called cancer. My husband’s lymphoma resurfaced this past late August. This stormed into our lives and took all that we were beginning to regain, as covid restrictions were being eased. I then, was placed in the drivers seat, and not the one we sit in for a lovely car ride.

    What can I say, as this is not a choice. Thankfully, my DMT was changed from Tysabri to Ocrevus a year prior, and this made all the difference as Ocrevus has been a life changing medication for me. Through the demands of caring for all the parts of living that Cancer demands, I have been able to remain stable until recently.

    Stem Cell Transplant is all consuming, as it requires a strong caretaker to step into many shoes in order to get through the process well. Our situation required moving temporarily to another city for several weeks, of which we are still here, but are being released home next week for one month. I am thankful that our hotel is just around the corner from the hospital, thereby making my during my husbands three week hospitalization easier. I lugged laundry to out hotel’s one small washer every two days, and hauled it back as my husbands clothes being clear were a vital priority to keep bacteria down to a minimum. I made drink runs and miscellaneous runs.This may not seem like a big deal to those who don’t have a physical challenge. For me, using a cane has become part of life, though on good days, I don’t use it, however, keep it nearby. Carrying anything with a cane is a challenge…Especially through the maze of a parking deck, then through to the hospital, elevators, steps, and down a corridor and into a hospital room. I certainly got some exercise.

    Caretaking was greatly appreciated by hospital staff, so it was helpful, though not required, though suggested, to help with showering, daily full body wipe downs with antibacterial special wipes, sheet changes, encouraging liquids, advocating, assisted hall walks, counseling when spirits rose and fell, etc!!! For near three weeks. The enormity of a stem cell transplant can be educated, but we had no real idea until it all began…which from the start before hospital admission were daily appointments and procedures to prepare.

    Then the discharge to hotel transitioning to daily outpatient appointments began. However, with no immune system, severe fatigue, and an uninvited lung infection complicated recovery. Now, we are preparing for our move back home. Now, I am feeling the affects of the last seven months of Chemo, tests, procedures, biopsies, family and friend advocate, running a home, an apartment property, and the care of my ill husband.

    MS, took a back seat, as it had no choice. My symptoms have resurfaced, and there have only been a few who have even asked how I am, as my husband needed to be first. MS seems distant, but ever present, but has no voice and no place, and must remain in the shadows. How do I take care of myself?

    2 people are talking about this
    Community Voices

    Over the last 7 months, I have lost about 40lbs unintentionally. I am still overweight (about 30 on the seriously antiquated BMI chart). I also have a lot of other symptoms including swollen axillary lymph nodes. Four months ago, my doctor authorized an ultrasound and a biopsy was done. It returned results of no cancer or lymphoma. Since then, I saw a gastroenterologist who put me on a low FODMAP diet for IBS, refusing my request for a colonoscopy because I had a clear one 6 years ago. I said that I have new symptoms, but he wasn't convinced my problem isn't anxiety/food-induced IBS - mixed c/d. I did the diet with very little change in symptoms. At my follow up, I asked for a colonoscopy, and he gave me excuses why I am fine. I asked about the weight loss and he said, "Well, at 168, your BMI is still..." and then I cut him off. I said I didn't want to hear any talk about my BMI. I am losing weight unintentionally and fairly quickly. The fact that I am overweight is irrelevant. I yelled at him until he said he'd order a colonoscopy/endoscopy. Luckily, a different doctor will be performing it. My primary also doesn't seem to care that I am losing weight. She refuses to refer me to rheumatology because my "bloodwork is fine," even though I have symptoms of a possible autoimmune disorder. My therapist even called my PCP and asked her to refer me, but she won't until the GI is done with what he's doing. I am having symptoms unrelated to GI and there are waitlists for most providers who accept my insurance. I don't understand why I have to wait when my insurance doesn't require it and I am suffering. I've spent the last 18 months trying to get care for my pain and symptoms. It took me 6 months and changing providers to get a referral to ortho and neuro because all my symptoms were blamed on anxiety. I am still being held back because I have mental illnesses and am overweight. I'm tired of all the stigma and bigotries in medicine.

    28 people are talking about this
    Community Voices

    There is joy in the journey

    <p>There is joy in the journey</p>
    1 person is talking about this
    Community Voices

    I’m new here!

    Hi, my name is kerya. I’m new to The Mighty and look forward to sharing my story.

    #MightyTogether Natasha lymphoma I didn’t start any treatment I’m just afraid

    3 people are talking about this
    Community Voices

    Worst week of my life so far part 1 #Autism #nvld #neurodivergent #Depression #SuicidalIdeation

    Exactly a week ago my life came crushing down and I feel like there’s no way out.
    First my aunt died from lymphoma in August and we got her cat that I loved more than anything else. Sadly she stopped eating at the start of this month and had fatty liver disease, we only had her for 3 months. The emergency vet put her on a feeding tube for 3 days but she was refusing that too. We think she was depressed because my aunt and the her whole family she lived with are dead. I wanted her to stay alive but I could tell it was the end because she couldn’t move far and peed on herself. My mom felt it was time to let her go and called for someone to come to our house to euthanize her. I was sad because she was still eating treats but saw that it was time too so I was there at home, alone when the sweet animal hospice vet came to end her suffering. I begged her to stay with me and asked got to take me instead of her. After it was done I had to work at my part time job and had to explain that I was late because I was crying in the car and that I was depressed because I felt guilty over her death. The next day I did not want to go to my full time job but I had to and I tried to keep myself together but my guilt was too strong. I was stressed from the people there and lashed out, I was sent home for being overly emotional 😭
    The rest of the day I just hid from my stepdad and got all my cries out.
    I thought that would be it for my sadness for that week but the worse was still to come and something I did this day would lead to a bad end for a chapter in my life.

    2 people are talking about this
    Mel Hebert

    The Truth About My Experience With Chemotherapy for Lymphoma

    As I’m sure much of the world has heard of chemotherapy, I was also aware of what chemo is when I was diagnosed with stage IV lymphoma. I had seen the movies, heard the horror stories — it’s something I didn’t want to experience. But after my diagnosis, I knew that it was a route I was going to have to take. In fact, my doctors prepared me that I’ll most likely need to go through chemo multiple times in my life due to the fact that my cancer is incurable and will always come back. But what actually goes through my brain during a chemo appointment? You might not want to know. At my first chemotherapy appointment, I wasn’t expecting such a reality check. I’d been diagnosed with cancer for four weeks at that point, but I don’t think it really hit me until that moment. I have cancer. And it’s a type of cancer I’ll need to deal with my entire life. The realization hit me like a truck. On chemo days, I wake up with immense dread. I don’t like to dwell on the fact that I have cancer, so my coping skill is to pretend I don’t. But when chemo appointments arrive, I have to face it. When I arrive at the cancer center, I’m instantly anxious. I know what’s coming. And even though the chemo appointment itself is bearable, in my mind it’s the worst thing in the world. I remember one time I was walking in with my mom and she made a comment about how nice the cancer center was. At the time, it enraged me. It’s not nice. The cancer center is probably the place I hate most in the world. It’s where I went from being a normal 26-year-old to getting a lifelong diagnosis of cancer. Rationally, I know it’s really nice for a cancer center, but it’s not nice for me. Usually, I’m able to hold myself together until I need to get my blood drawn. Then, it depends how that goes on when I begin crying. I don’t have a port, so the nurses have to find a good vein each time, and if they get the IV in the first time, I’m a little more optimistic about how my day will go. But on the days where it takes three, four, or even five times with veins being blown and my whole arm turning blue, it’s a lot harder to cope with. There’s roughly a 50/50 chance that I’ll have a full-blown panic attack while waiting for the actual chemo to start. I need to bring my anxiety medications every time because I know I may lose all control if I don’t have them. I don’t consider myself a “warrior.” I’m not the person in the cancer center that’s taking pictures with a bubbly smile talking about how they’re going to “beat this thing.” I’m usually the one on the verge of tears. However, since every other patient there seems so happy-go-lucky, I feel like I can’t cry in front of nurses and doctors, which often leaves me trying to hide my tears. I’ll get asked, “Are you OK?” and want to snap at whoever dares to ask the question because obviously, I am not OK. I am the furthest thing from OK in those moments. If I was OK, I wouldn’t be getting chemo. Every session, multiple times, I’ll have these fantasies of ripping my IV out and just running away as fast as I can. I want to dig my head in the ground and pretend I don’t have this illness. I don’t want to deal with it. I don’t feel I’m strong enough and genuinely don’t understand why this is happening to me. And I wish I could be sunshine and rainbows about it, spewing on and on about how it gets easier and it’s not that bad, but unfortunately, for me, that’s just not true. I get more used to it, sure, but it’s still just as traumatic. The chemo, the side effects, the symptoms from cancer — everything is traumatizing. I often wish this never happened to me and question what I did to deserve it. I try not to dwell on that. I try to distract myself on normal days because I rationally know that all of this was by chance and I didn’t do anything to cause it. But when I’m in that cancer center, everything changes. I lose that rationality and begin to go down the rabbit hole of unhelpful questions. “Why me?” “Why couldn’t I have dealt with this later in life — why did I have to get diagnosed at 26? Why can’t I just enjoy what are supposed to be the best years of my life?” “How can I make this go away?” “What did I do to deserve this kind of karma?” There’s never an answer. It’s all anxiety and depression talking. But for some reason, I can never pull myself out of the rabbit hole there. To me, the cancer center is this wretched place where all of the bad thoughts come out. Even though my prognosis is good, I can’t help but go down that dark road every time. And I know I’ll beat it, just like all those people who smile for pictures instead of crying. I’m not going to die. But knowing that doesn’t make it any better. So, if you were looking for an article that gave you hope or inspiration, I’m sorry this wasn’t it. I’m just not there yet. Maybe one day I will be, but right now, whenever I get chemo, all of the positivity deserts me. To everyone else fighting, I wish you well. And if you have any insight on how to put on that happy face and forget how awful chemo is, let me know. Otherwise, we’ll get through this together.

    Mel Hebert

    6 Things I Didn't Expect When I Was Diagnosed With Cancer

    When I got diagnosed with cancer last June, it was surreal. I’m 26 and, for the most part, fairly healthy. I’m overweight — but I don’t smoke. I don’t drink. I don’t do anything that’s connected with cancer. Yet, there I was, getting diagnosed with stage IV lymphoma. My prognosis is good. Lymphoma at 26 is unlikely to kill me. But still, it’s hard. And not just for typical reasons, like chemotherapy or nausea, but for other reasons as well. Here’s everything I wasn’t prepared for when I got diagnosed with cancer: 1. My life was about to change forever. Despite having a good prognosis and knowing I won’t die immediately, I will never be the same as before I was diagnosed. Even when the chemotherapy is over and I only need to go to the cancer center every few months, I still won’t be the same. My life has been forever changed — and I don’t know how to explain it. But every cancer patient I’ve talked to agrees on that one thing. Getting a diagnosis of cancer alters everything. Especially when you’re 26 and find out your cancer is incurable and will inevitably come back again at one point or another. 2. You can be allergic to chemotherapy. This is something that surprises people every time I mention I’m allergic to the chemotherapy I’m receiving. My throat will get itchy and I need to be closely monitored to make sure everything remains stable. To solve it, they will stop the chemo for an hour, pump me with more Benadryl and steroids, then resume the chemo. This means that my chemo appointments have been up to 10 hours long. 3. The side effects of chemo are worse than the actual chemo (for me). When I started, chemo I thought it was the most awful thing. I hated being poked with needles. I would cry every time. And now that’s waned away a bit. Instead, I’m left with the aftermath. I’m trying to work while completing chemo and need to call off half of the time due to being so immunocompromised that I get sick, or just having straight side effects. Currently, I’ve had chronic GI issues for over five weeks. I’m a teacher, so I’m not always able to leave my class as the kids can’t be unattended and I’m not going to risk throwing up or having a diarrhea accident due to not getting to the bathroom in time. 4. Being immunocompromised is really awful. As someone who was fairly healthy before all of this, I’m suddenly sick all of the time. I don’t remember the last time I went a day without being sick with some sort of illness. Maybe two months ago, way back in August? And that’s with the protocols in my state of masks being mandatory. I can’t imagine if masks weren’t a thing and people weren’t being over-vigilant about keeping the population healthy. 5. People don’t get it. They just don’t. They don’t know what to say. They’ll inevitably say the wrong things most of the time. Especially being so young, my friends have never had a friend with cancer, so I mostly get toxic positivity whenever I try to vent. All I need is a, “You’re right. That really sucks. I can’t even imagine.” Because they can’t. Until you’ve been through it, you really can’t imagine what it’s like. And feeding me, “Everything happens for a reason!” or “Just keep a positive mindset and you’ll be OK!” isn’t helpful. If everything happens for a reason, please tell me why I have an incurable cancer diagnosis at 26 years old. If I just need to keep a positive mindset, why won’t my symptoms go away? 6. How many times I would be told I have “the good cancer” as an attempt to make me feel better. I can’t even count how many times this has been brought up. I’m lucky because I have the “good cancer.” I know it’s said with good intentions, but just so everyone is clear, there is no “good cancer.” No one is ever “lucky” to have cancer. Cancer sucks. All of it. Every kind. And minimizing this huge diagnosis by calling me lucky is insensitive, at the very least. I’m not lucky to have cancer, and while I have a good prognosis, my cancer is still a bad cancer. In the end, what I’m trying to say is that cancer is hard. And a lot of people know that, but they don’t truly understand it. They know that cancer means facing difficulties, but they don’t understand the impact of those difficulties or the medical trauma cancer imposes. They don’t know that it’s common to get a diagnosis of PTSD after having cancer because it really is that traumatic. They don’t realize that life still won’t be the same once I’m finished with chemo. Cancer isn’t an inconvenience you need to put up with for a year or two until you’re in remission. It’s debilitating. It changes everything. It’s something that when it affects you, it’ll leave you with that scar forever. No matter how much time passes, that diagnosis will always be a huge part of your history. And it’s time we start acknowledging that.