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Thread: Just want to type out whatís on my mind ...

  1. #1

    Just want to type out whatís on my mind ...

    Most of you that Iíve interacted with on here know that I suffer from health anxiety from time to time. Iíd imagine I also have some form of PTSD. Well, itís back. Interestingly Iím posting here almost exactly a year since last time. Makes you think ...

    Anyway, Iím just going to type out what is in my head because it helps me to get it out.

    Iíve had some neck/upper back pain for a few months. Not all the time, just when I turn my head certain ways. Didnít think anything of it until last week when I had a few night sweats. Not drenching, just some moisture around my neck, chest, and back. Shirt was just barely damp. Sheets were dry. Itís summer, I know, but it always gets my mind racing. These few sweats got me wondering if maybe there was something more to my back and neck pain. Hello, anxiety. The poking and prodding commenced. I feel small nodes, but Iíve been doing this long enough to know they are within normal size. I started checking my weight too much. It was lower than what I expected, but within 5-10 lbs. Shouldnít be a big deal, but it added to my worry. I also started taking my temperature too much. In the late afternoon Iím am usually around 99.3. Peaked at 99.6. I know these are not fevers, but again my mind started racing. The last couple days I started to notice some bruises on my forearms, calves, and ankles. Iíve never noticed many bruises before. One bruise has a little scratch with flaky skin in the middle of it. That evil Dr. Google says I have leukemia caused by the chemo I received for lymphoma. I know this is rare and I donít think it would usually present this early after treatment. I have a doctorís appointment on Monday with my PCP for the back pain. All the other issues arrived after I scheduled that appointment so my doctor isnít fully filled in yet, but I will be sure to bring these things up at the appointment. Blood tests in March were all normal.

    I know what everyone is going to reply, but yet here I am asking for support.

  2. #2
    Moderator Top User
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    Mar 2010
    Posts
    1,355
    Hi Josh, learning to trust your body again and finding coping strategies to deal with relapse worries are well discussed over the years and each of us has to find what works for us and at times that may include checking in with a doctor to seek reassurance, that's all normal and ok and we all get through it. Nothing you have mentioned rings alarm bells at this stage, but none of us are medically trained and neither is Dr Google who within 3 clicks can have you terminal or dead within months. For me I always said if those drenching night sweats returned I would be worried, like many of us I have had some night sweats over the years, so worse than others but not the drenching ones so have always dismissed the sweats as not being serious enough to follow up on. I used to share a paper by Dr Peter Harvey, Life After Treatment, if you have not read it do it helps you realise your worries are normal and not unusual, as you head to your 5yrs in remission goal start to tell yourself you are cured and secondary issues if you are unlucky will be another 10 years down the road and it may help you with a coping strategy and never feel guilty about posting or sharing your worries and we will try not to be too hard for using google to find a diagnosis.

    let us know how it goes and I have every confidence your fears will be allayed

    John
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  3. #3
    Senior User
    Join Date
    Sep 2016
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    310
    Hi Josh, As John has said anxiety, PTSD and depression are normal feelings after being diagnosed/treated for cancer. I would really encourage you to talk to a professional counselor. You could start with the social worker at the center where you were treated and they would likely have referrals for you if you want 1-on-1. There are also almost always survivor support groups (which are free) and the social worker would either lead those or hopefully be a resource as to where those are held. There is also online help and nonprofits which will match you up with someone who has been through a cancer situation similar to yours and you can communicate by whatever method works best for you (phone, email, etc.) with someone who understands - one organization is CancerCare Alliance (https://www.cancercare.org/). There are also professional counselors you can talk to via phone (for no charge). You have a right to your feelings but it's important to work through them and the get support you need so anxiety doesn't rule your life. Much love to you!
    Researcher, advocate, and caregiver to my son, age 24 at diagnosis
    July 2016 Diagnosis ALCL ALK-neg
    Sept 2016 E-CHOP x3; PET scan CR
    Nov 2016 Sixth and final round of E-CHOP completed - Continued to live alone and work two jobs through chemo!
    Dec 2016 PET scan CR
    March 2017 Experiencing symptoms; CT-PET scan shows relapse.
    April 2017 CD-30 confirmed w/ biopsy; Begin Brentuximab to reach CR for Auto transplant
    May 2017 Biopsy came back as Classical Hodgkin's - misdiagnosed initially
    June 2017 Only partial remission with Brent so on to ICE x 2 (worst yet)
    August 2017 Good response, but still PR, moving forward with ASCT. Outpatient at CBCI in Denver.
    October 2017 Clear scan after auto. Begin Brent for maintenance X3
    January 2018 PET-CT shows relapse. Begin Keytruda in Feb
    May 2018 CR after just one dose of Keytruda.
    Scan in August, 2018. ALL CLEAR

  4. #4
    Super Moderator Top User po18guy's Avatar
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    Cognitive Behavioral Therapy. Drug-free help to control your anxiety - regardless of the cause.

  5. #5
    po18guy, I need to actually follow up on counseling. I always start looking into it and then I go to the doctor and they say Iím fine, so I stop worrying.

    Thanks everyone for the kind words. Iíll take any facts/advice/support I can take right now.

    Thank you all!

  6. #6
    Moderator Top User
    Join Date
    Mar 2010
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    1,355
    Josh another thought that may help especially as you are heading to 5 years, the risk of a secondary cancer is there we all know that, but its not a large risk and it is way down the road, so try to tell yourself you are dealing with the here and now, and what ever the future throws at you that will be dealt with then and no amount of worrying will prevent the future, it will though cause you angst and unhappiness.
    See each day for what it is, a new day, a fresh start a good day because you woke up and are alive.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  7. #7
    johnr, I know all these things, but yet my mind only wants to focus on the negative. Something I need to work on for sure. Iíve read so many studies that show that the risk of leukemia after ABVD is the lowest of the chemos for Hodgkin. Less than 1%, like 0.3%

    My mind just focuses on the fact that it is possible. I feel Iím going to be the unlucky one.

  8. #8
    Moderator Top User
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    Mar 2010
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    1,355
    Josh given that then do follow Po's advice as you need help to break that "cycle of thought" the other trick I used in the early days was to always look to find a positive to focus on so that the negative was pushed into the back ground, silver cloud and all that .... it took a while but worked for me. I also had a good friend who would say someone has to be a good stat why not you, something I used to quote back to me when relapse thoughts drifted in to my thoughts on a night time, as back in 2009 the stats said I had something like a 29% chance of making 5 years for my NHL and here I am in my 10th year post diagnosis and the stats say 50 to 60% for 5yrs and HL stats were always so much better.
    NHL DLBC aggressive stage 4B advanced
    diagnosed april 09
    after 8 rchop and a couple of delays, in remission
    some long term side effects to manage post treatment
    some blips and investigations on the journey but now
    22nd oct 2014 discharged no more hospital visits


    we are all on a roller coaster ride, riding blind never knowing where the highs and lows are.

  9. #9
    Regular User
    Join Date
    Jun 2019
    Posts
    12
    very inspirational. thank you for sharing.

  10. #10
    Super Moderator Top User po18guy's Avatar
    Join Date
    Feb 2012
    Posts
    10,493
    Recently had sharp pains in my ileum. Where's that? Well, the only reason I know is because I had lymphoma there in 2015. That was actually the only involvement that was painful. So, fresh pain there raises those nagging suspicions. Yet, it came on very suddenly and was constant, whereas the lymphoma only produced episodes of pain.

    Had an urgent care doctor examine me anyway. She suggested an ultrasound, but they were booked out for some time. Since I had an appointment with my hematologist the same week, I'd just wait. But she was late arriving back from holiday so that was cancelled.

    In the meantime, it resolved. Simply went away. Noise.

    We live in a very noisy world.

 

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