Lymphoma

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    dealing with Cancer

    My husband of 41 years was just diagnosed with lymphoma and we are both dealing with the treatment and the ups and downs of cancer. Depression, dealing with insurance and hospitalization are taking it's toll ! We need support and help

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    grief

    It is sinking in that my therapist has cancer and I may not see him again. When he told me I was in a crowded airport. He tried to get me to call back but I asked him what was going on. I was shocked and he said he was sorry I had to find out this way. I remember a few years ago I said half-jokingly "what will I do when you die?" and he said, "hopefully you will be better by then?". I tried to just be respectful and supportive. He said he would know in a month or two if he was working again, and if he did it would have to be tele health only. He said he had a list of long-term clients that he would touch base in a month. I mostly just want to know how he is doing. I told him that I would be thinking of him.

    My husband understands how important he was and that I am still fragile. He encouraged me to meet with people and get to know someone, in case I need more support or get triggered while my therapist is battling cancer. He understands that it can sometimes be hard to find a good fit. I thought he was right. My therapist was supposed to email me a referral of someone to speak with if needed but he did not get to it. So today I called to make an appointment with a new therapist, and I almost started crying. I know that I can adjust to a new therapist, but this is a loss. I liked him a lot and he saw me through some tough times. His boundaries were always good, but he shared more information than many other therapists would. He was smart, progressive, warm and funny.

    In other relationships, you could ask if you could help. or talk to other people who also care about this person. He has non-Hodgkins's lymphoma that has spread throughout his body. He said it was aggressive but treatable, he said he had a 60% chance of survival. I was calm but I thought to myself, those are not the best odds. So, he may or may not work again depending on how he responds to treatment. I know he has adult children that live in town. The only thing I can do is continue to take care of myself and accept the grief that comes from no longer having this person in my life. I can be grateful that I had such a good therapist for so long, on and off for over 20 years. I will miss seeing him.

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    Phone call

    Yesterday I got a phone call from my therapist of 20 years. He told me that he had non-Hodgkins's lymphoma and that it had spread throughout his body. He won't be working for the at least the next month and maybe longer. He sounded optimistic and positive. I am sad for him. He is such a kind compassionate man, and he just had his first two grandchildren. I am sad for myself because I will miss him. It makes me sad that I won't know what is going on with him and that I can't be helpful. That it is now this abrupt goodbye. He said he will give me and update in a month as to whether he will be working again. If he does it will be telehealth only. I am not a friend or a family member, so it is not appropriate or even helpful to do anything more than tell him I will be thinking of him. I am an anxious person, so I've worried about him before. I don't feel anxious now, just very sad.

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    I’m new here!

    Hi, my name is Saydiya. My 16 years old daughter has been diagnosed with B Cell Lymphoma ALL

    #MightyTogether

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    What do you find to be the most challenging about a cancer diagnosis?

    Getting a cancer diagnosis is many things — heartbreak, anger, pockets of simplicity, grief, even gratitude. But there are parts of it that straight up suck.

    What’s been the #1 challenge for you or a loved one?

    #Cancer #BoneCancers #BreastCancer #OvarianCancer #LungCancer #ThyroidCancer #lymphoma #ChildhoodCancers #MentalHealth #ChronicIllness #ChronicPain #Caregiving #Grief

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    What advice would you give someone recently diagnosed with cancer?

    Being diagnosed with cancer can certainly be scary, confusing, and frustrating — just to name a few of the whirlwind of emotions that may come up.

    If you could give any advice or words of wisdom to someone newly diagnosed with cancer, what would you share?

    🎧 🎙️ If you're up to it and would like to listen, feel free to check out this Mighty Podcast episode on what it's like living with a rare cancer:
    themighty.com/topic/cancer/living-with-a-rare-cancer

    #Cancer #BoneCancers #BreastCancer #OvarianCancer #LungCancer #ThyroidCancer #lymphoma #ChildhoodCancers #MentalHealth #ChronicIllness #ChronicPain #Caregiving #Grief

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    Remission

    #Cancer
    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.

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    Introduction #Undiagnosed #Anxiety #Stigma #ChronicPain #ChronicIllness #MentalHealth

    Hi everyone. I'm new to this group, but have been on The Mighty for a little while. I am 41 years old and currently struggling to get a diagnosis for many of my symptoms. My history of mental illness has caused a lot of bumps in the road. I have been told that my symptoms are from stress so often. One recent serious example was a year and a half ago when I saw my primary care doctor for shoulder pain. After 6 months of trying to prove my symptoms were not anxiety, I got a new PCP who referred me to ortho. They found tears in both rotator cuffs and severe biceps tendinitis. I had surgery on the left in November and am having the right done this summer. Another issue has been the fact that I am losing weight unintentionally and no one seems to care because I am still overweight. I have lost about 45lbs since August while getting enough calories to maintain my weight.

    I currently have a bunch of different diagnoses, but I have symptoms that have not been diagnosed. These include chronic widespread pain, muscle spasms, tendon pain, headaches/migraines, lightheadedness/dizziness, nausea, swollen lymph nodes, brain fog and cognitive symptoms, sleep problems, tachycardia, and fatigue. This is not a comprehensive list.

    I have seen a neurologist who did many tests, but no diagnoses besides migraines (and what's left of the carpal tunnel after having surgeries). The gastroenterologist, who did not want to do a colonoscopy, found a pre-cancerous polyp and hiatal hernia, but no inflammation or cancer. My lymph nodes were biopsied and negative for cancer and lymphoma. I asked for a referral for rheumatology a number of times, but was denied because my "blood work looks normal." My PCP also denied to test my vitamin levels (besides vitamin D, which I have been known to be deficient) because I "eat well." The neuro tested my vitamin B-12, but there are a lot of vitamins and minerals that I could not be processing properly.

    Most doctors just want to cover up my symptoms with medications. I want to know what's causing the symptoms. It's frustrating to feel awful and have to keep fighting every step of the way. I had never been good at asking for what I need, but I am finally doing it despite all the anxiety and fears.

    18 comments
    Post

    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 comments