Feeling overwhelmed, can't stop crying.

PatiD
PatiD CSN Member Posts: 6 Member

hello,

I was recently hospitalized and had to push my treatment back. Since this happened I cannot stop crying and feeling like a failure. I wanted my treatment to go by as quickly as possible and now I don't know when it will start again. My doctor also told me I should take off work until treatment is finished and now I don't know what to do with myself. Any advice would be welcome, I could use a big hug too.

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Comments

  • po18guy
    po18guy CSN Member Posts: 1,549 Member
    edited August 5 #2

    Sorry to hear this. The goal is to survive, correct? Many of us have had to extend treatment or stop it short of the full course. Doctor is reducing your risk of sepsis. Billionaire Paul Allen did not succumb to cancer, even though he had both Hodgkin's and non-Hodgkin's Lymphoma at different times. He succumbed to uncontrolled infection - sepsis. Infection can take a life 10X faster than the most aggressive cancer. So, let your body heal and strengthen!

    Failure? No way! You are surviving, living through cancer. I had to stop work at the two-month point in a four-month treatment involving two regimens. I focused on healing and work-related issues took care of themselves. In the states, you can apply for Social Security Disability at any age if you become disabled. On-going treatment is certainly a disability. When and if you apply - fairly easy online - your application is expedited when you check "cancer" as the reason.

    Do you have family, friends, co-workers, or neighbors for support? They may not always have the exact words you need to hear, but their hearts will be in their support. That alone can be great comfort. Chin up, and fight for what is worth defending!

  • TonyF747
    TonyF747 CSN Member Posts: 3 Member

    You are so right about infections. I've had sepsis twice already and almost checked out the first time. That was 15 years after one 6 month course of chemo for lymphoma.

    My best friend was going through chemotherapy for a different type of cancer last year at the same time I was dealing with a recurrence of my cancer. He said that the cancer probably won't do us in, but an infection.

    So, PatiD just trust that the doctors are taking the necessary steps to ensure that you will be able to continue safely your treatments. All my best wishes to you and I'm giving you a big hug. 🫂

    po18guy gave you great advice. Just know that there are people on here that can relate and that really care about each others journeys.

  • archangel724
    archangel724 CSN Member Posts: 13 Member

    Hi PatiD,

    I feel so horrible for u but PLEASE don’t ever think that you are a failure! You are like all of us, a true warrior! It’s not each skirmish that counts but winning this war we unfortunately never asked to be signed up for. U got excellent advice from PoGuy18(he’s awesome). The main thing is to listen & trust your Drs, your only job is to let your body heal & get strength back.
    I feel bad, I’m a luckier one who’s worst concerns were treating a uti, tooth infection & severe neutropenia after each treatment. The neutropenia (white blood cells critical) had also sidelined my treatment for almost a cycle & I too cried, afraid of losing any time fighting this beast. Begging my Drs not to withhold it, terrified at Stage 3 it would spread. I had to trust in their experience & judgement that they knew what was best and wouldn’t let me get too off track, but your overall condition & whatever strength we can hold on to, is so important for the fight. Once u get better, ❤️‍🩹 u will get back on track hun. It’s a delicate dance but hey, that’s why they get the big bucks right? 😉a stupid attempt to make u smile, even at my stupidity. They know what’s best for you & your body rn. I’m so sorry I can’t b of much help. I’m going through my first time, diagnosed in February 2025 & very naive but this is a very caring, supportive place, with great people who have been warriors long b4 me.
    I am sending u that big big hug 🤗 along with my thoughts & prayers that u will get better ❤️‍🩹 soon & back on course when you’re ready. U could NEVER b a failure so please don’t say u are. If we all had control over our bodies, none of us would be fighting this war. It would never has entered our lives. But we continue on as best as we can. Please keep us posted when u feel stronger. All my best. ❤️‍🩹❤️‍🩹🙏🏻🙏🏻🙏🏻

  • archangel724
    archangel724 CSN Member Posts: 13 Member

    FORGIVE me please..it’s po18guy NOT poguy18! See chemo brain! 🧠 He’s awesome.

  • po18guy
    po18guy CSN Member Posts: 1,549 Member

    I have a T-shirt which says "I have chemobrain. What's your excuse?"

  • archangel724
    archangel724 CSN Member Posts: 13 Member

    lmao!! Omg I SO need that shirt!! But I find myself using that excuse far too much! Now without offending anyone, shouldn’t b/c I’m honestly offering myself up as the first of this group, “excuse what the chemo did to my already blonde brain” double whammy! 🤣 boom. You’re really the best! Hmm maybe I need to research if Bendamustine causes dyslexia. Again, no offense anyone. We HAVE to LAUGH. Especially together. Nobody else gets our humor(mine was always dry n kinda dark) but only all of us together, who truly understand what our lives are like during & after cancer can understand. A lot of jokes I make, my 25 yo son says “c’mon mom” like HE’S offended! 🤦🏼‍♀️ I’m the one with lymphoma, get over it, at least I amuse myself. (Blonde lol)

  • PatiD
    PatiD CSN Member Posts: 6 Member

    thank you all for the wise words, the hugs and the laughter. You all made my day much more bearable. Got the okay from my doctor to resume treatment on Wednesday. I’ll keep you posted! Thanks again! Pati

  • archangel724
    archangel724 CSN Member Posts: 13 Member

    Hi PatiD. That's excellent news! How are u feeling? Ik it’s still going to take some time for your strength to come back but if you’re back on track for Wednesday, I’m very glad that you are past the worst. Are u out of the hospital? Just take 1 day at a time, listen to what your body needs and rest when u need to! Take good care of yourself, first & foremost. Please know we are all with u & only a message away! Sending more hugs 🤗 and prayers. Please do keep us posted when u are able. Wishing u all the best!

  • gaumondd
    gaumondd CSN Member Posts: 4 Member

    Hi PatiD ,

    I know how tough this is. Been there, doing it. You do need to listen to your body . I would sit in my chair after each chemo and the days following and give it to God because I didn’t know what to do. I am in remission, 7 months and my life is getting back to normal, with naps each day. Getting use to the new me, chemo curls and all. We are all here to support you I just joined today,I wish I had earlier. Sending hugs and prayers as well.

  • PatiD
    PatiD CSN Member Posts: 6 Member

    Thank you so much for your kind words. I had my 6th treatment yesterday and am relieved to be back on track. Finding today to be a bit better but am still sad. I’m glad you joined this group, I just joined last week and found everyone to be so welcoming and supportive. Congratulations on your remission. You made it through!
    PatiD

  • PatiD
    PatiD CSN Member Posts: 6 Member

    update: I had my 6th treatment yesterday and it went well. My labs looked good too. My doctor said the only thing I have to work on is my hydration and eating, I lost 7 lbs in a month. I’m just not hungry at all, but my husband has me eating something small every two hours and that seems to help.
    My doctor also mentioned having radiation oncology look at my mid way pet scan to see if I am a candidate for radiation therapy. She said because I had a favorable response to the chemotherapy and my Hodgkins is localized that radiation is a good option. My nodes are localized to the inguinal region and she said no organs would be in danger of secondary cancers in that area. I’m worried about this change in plan, I don’t know if that means less chemo, or more treatment after my next 6 treatments are done. I guess I’ll need to wait to see what the RO feedback is. Has anyone else had a change in plan like this? Any little thing ramps up my anxiety and this is a change to my original treatment plan, leading me to think the chemo isn’t working as well as my doctor had hoped. It wasn’t a clear scan but most of the nodes had a deauville score of 2 except for the original largest node which scored a 3 after 4 treatments of Nivo-AVD.
    Again, thank you for all your support. I’m glad I found this group, cancer can be so isolating and it helps to know there are others out there like me.

  • PBL
    PBL CSN Member Posts: 390 Member
    edited August 8 #13

    Hello Pati,

    If I read you correctly - and if Hodgkin's works like Non-Hodgkin's - you have reached remission one-third into your treatment, which is great news. Deauville scores of 2 and 3 are considered to mean "remission", i.e. a complete response to treatment.

    It is quite normal to have a hard time coming back down from a very heightened state of stress; your doctor can help you manage this with the help of a specially trained psychologist, anxiety medication, support group, exercise program…

    I would encourage you to discuss your thoughts and emotions with your care team.

    Kind regards,

    PBL

  • po18guy
    po18guy CSN Member Posts: 1,549 Member

    I was on an experimental drug for almost 5 years. I could not eat for 24-48 hours after infusion. I settled upon scanning the pantry and refrigerator for something appealing. When I found something, I ate it immediately, as later it might not be appealing. Your husband's plan of offering food throughout the day sounds very good. If you are not hungry, maybe focus not so much on what you mind wants, but on what your body needs.

    As to anxiety: In truth, it serves no positive purpose. It cannot help you before, during or after treatment. Our bodieds are capable of producing about 150 yptoms of al known diseases and conditions. Anxiety, by itself, can produce as many as 100 symptoms of actual disease, with no disease being present! And these symptoms only feed the anxiety. Please consider seeking help with the anxiety, as it can become debilitating - it may be responsible for your weight loss, actually. There is much help available to assist with the anxiety which is a natural product of the diagnosis and treatment.

    Cognitive Behavioral Therapy is the gold standard for treating anxiety. It is normally drug-free and can be received in person, over Zoom or even by telephone. You deserve to live in peace! Please ask your team about dealing with the stress and anxiety of this journey. They are more than willing to help.

  • Emmy_y
    Emmy_y CSN Member Posts: 3 Member

    Hi Gaumondd,

    I like your comment and encouraging words for PatiD. Your acknowledgement of the place and role of God is admirable and certainly not in vain. By the way, welcome to the group.

  • PatiD
    PatiD CSN Member Posts: 6 Member

    Thank you PBL and po18guy for your responses. I very much appreciate the advice. I have been dealing with an anxiety disorder for over 10 years, it has been well managed between therapy and medication for the past three years. Unfortunately, my diagnosis kicked it into play again. Its frustrating as I have to contend with both, anxiety seems to be at the forefront of my cancer battle, making it that much more difficult.

  • gaumondd
    gaumondd CSN Member Posts: 4 Member

    Thank you. Not sure how to be encouraging. This is a difficult journey but I made it so far. Anxiety is definately a part of the journey. Like I said, I handled the anxiety by giving it to. God. One of the main foods I could eat were sourdough pretzels and hummus. Carbs were a mainstay. I was so excited when I could eat fruit and veggies again that didn't have to be cooked. I am back to eating normal again and exercising but I have to watch my weight because I lose it so easily. Snacking is important. Small amounts through the day. I don't do it enough because I don't feel like it. This is making me aware. Good luck to everyone on this journey.

  • mossback99
    mossback99 CSN Member Posts: 47 Member

    Hi Pati, I know what you mean about feeling sad and isolated. Even with family and friends around, if they don't have cancer, it's very difficult for them to truly understand what we are feeling and thinking about. At least, that's how it seems for me. They all have very good intentions and truly want you to be better/cured, but again, unless they also have cancer they just don't fully understand. I think that's a big reason why this forum and others are so valuable- we can find and interact with others who truly understand and have been there. So valuable…

    po18guy is correct about the anxiety. It really doesn't help in any aspect. I'm not nearly as good as he is in pushing it off to the margins but I am trying. Try to focus on helping yourself as much as possible, good eating habits, drinking water, staying active, etc.

    I hope you get some clarification on your treatment plan soon if not already. I'm thinking about you and I wish you well.

  • PatiD
    PatiD CSN Member Posts: 6 Member

    thank you mossback99 for your supportive words. It’s been a rough week, but I meet with my doctor tomorrow and am hoping for some clarification.

  • po18guy
    po18guy CSN Member Posts: 1,549 Member

    I had near zero anxiety, as I expected cancer due to family history. Thus, I was not disappointed. I had a bit at first relapse, but I was naive. I have (and had) my faith and it had been building for some years prior to the arrival of cancer #1. Thus, I was at peace with both living and dying. It was freeing to abandon all claim I had to my life. Yet, after four cancers, it has been spared. I tell no one what to think. I can only reveal what I think and give reasons why.

    Being slow on the uptake, it took me years before it occurred to me that I was a survivor. So, I joined as many cancer forums as existed in 2012. And, from decades dealing with anxious persons as a first responder. I was acutely aware of the disadvantages of anxiety. Over time, I found that the most anxious are those who do not actually have cancer.

    Nevertheless, cancer or no, facing the anxiety down is the most certain method of regaining control of your thoughts and emotions. For those anxious souls who are also diagnosed, I can advise only to dive deep into what assisted them in subduing the anxiety in the past. Yes, it can be very difficult, but life is still worth living; we are still loved and we still love others.