Getting BACK to living!!!!

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drpearl
drpearl Member Posts: 28 Member
edited December 2023 in Anal Cancer #1

Hi all, just checking in. I am one year from my diagnosis now. My treatments ended in Sept 2022. I had a few really dark months and was unable to shake the fear of incontinece. My urgency kept me home and afraid to do much. It was creating more anxiety and messing up my household moral. None of us were able to work. Some on disability, some had run out. We were a mess!!!

I had a breakdown in March with my surgeon and nurse navigator. I had another down day in April with my Onc. He called my PCP and they started me on Wellbutrin. It took several days, but I STARTED TO HAVE CLEARER THINKING. I began to focus on my nutrition and my body became less achy and I felt able to move better, less joint pain. I did 8 weeks of physical therapy for my hips after radiation, and now I am in Pelvic floor theraphy. I now look for options instead of excuses.

Now it is July again and I am feeling strong, I am running and training for the 2023 Chicago Marathon. I am reclaiming my power!

I thought my life was over, feeling doomed to being a sad housebound middle aged lady who had lost all of her nest egg to cancer. Well, I am starting a new business and a part-time job as well. I have started to look for solutions that work for me, instead of searching for justification for my short-comings. I know how easy it can be to just stop trying because this horrific uncomfortable to talk about cancer paused my life for a while. But I am here to say NO MORE!!! Cancer had enough of my time and energy, I vow to continue to do better to reclaim my power and live my life.

LIFE is OUT there!!! GO get it!!!

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  • Nutmeg1
    Nutmeg1 Member Posts: 21 Member
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    Hi drpearl,

    It is lovely to hear that you have changed thinking negatively. It has been six years since my treatment and yes, there are days where I sum up all the changes I have had to make over the past few years, to accommodate my body's 'new' functions. The after-effects of anal cancer treatment doesn't get me down as much as it used to, but now I do pause and take a breath. I am not the same woman.

    I've looked at photos of the younger me and felt sorry for her, knowing now, what she would go through as an older woman. My naivety, hopes, dreams and sense of dignity have all been changed. As a person, I believe that I am better for having gone through the discovery, treatment, after effects and shock of anal cancer. I am alive and am now living with a different purpose in life. But I wouldn't wish this disease upon anyone.

    Stopping and smelling the roses, smiling at a mother and her baby, seeing all the different colour greens in trees, sitting and being creative making something and generally taking life a lot slower, is the lifestyle I now find myself . I used to be a highly functioning and a contributing member of society. I guess you could say that I have had the wind knocked out of me.

    I simply cannot do the things I once did. It used to frustrate me to no-end, being so incapacitated (or so it seemed). Under pressure I fall apart and lose my brain, it takes me a lot longer to get anything done, moving to do anything feels like I'm in slow-motion, I can only stand for short periods of time now, and concentrating on anything - exhausts me.

    I am okay with it all, now.

    Whatever you face, you will be able to overcome it. We may be crying while we soldier on, or we may spend a day in bed allowing time to pass, we may feel lonely but we are in good company, as we are not the only person who has endured the agony of recovery from anal cancer. I took heart and sat with my grief of loss, because it was true, I had lost a great many things. Living has a purpose all of its own.

    Finding out who I really am, under adversity was an interesting discovery. The result being that now, I am a lot kinder, more patient, listen better and small problems are just that - small. Feeling sad doesn't necessarily mean I am thinking negatively. Sure, self-pity can produce sadness and there are times for that too, as you inferred as long as it doesn't go on for too long. Experiencing loss - of health, dreams, plans, finances, a job, relationships, a body we once knew and the list can go on, but losing the life I once knew is a companion that has changed who I was.

    Being discontent, is not negative. Discontentment with life, to me has been the catalyst for change. As you too have discovered the need to get up and get on with living is something we need to do. I try to remember that it is okay to be sad, we have real reasons to be. I will never be able to get back what I have lost.

    I hope I haven't gone on too long about my journey of grief with anal cancer, I know we all do it different. I hope you get some comfort knowing you are not alone in your cancer journey.

    Megan

  • drpearl
    drpearl Member Posts: 28 Member
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    Thank you for sharing! I feel the more open and honest we are the better we may be able to help others. So... here's more open honesty from my life. I may be looking into divorce after the holidays.

    All of that positive thinking convinced my spouse that I was no longer happy with what life used to be. When in reality I was doing all of it to be my best for my family.

    There's no right way to do this survivorship stuff... I just keep trying anyway. There is life or there worth living after all of the pain and grief of real losses we've endured.

    Wishing you the best,

  • Rebar
    Rebar Member Posts: 30 Member
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    Very inspirational. I am still at the beginning stages, and have had the same feelings / experiences as you. Glad you're on the good road again!

  • smr7059
    smr7059 Member Posts: 14 Member
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    I start Treatment for Stage 2 Anal Cancer on 1/8/2024. Chemo with RFU for 96 continuous hours plus one dose of Mitomycin, plus 30 Radiation Treatments, & 96 hrs. Of RFU on wk 5 of Radiation. My concern is whether I should take the Mitomycin, which is toxic & could cause severe side effects. I already have Rheumatoid Arthritis & worry about what this will do to my already compromised immune system. Can anyone shed some light on this? Thanks.

  • smr7059
    smr7059 Member Posts: 14 Member
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  • drpearl
    drpearl Member Posts: 28 Member
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    Sorry, I wish I could be of more help. I was given 3 xeloda pills 2x daily on the days of my 28 radiation treatments. I only have l had one dose of mitomycion one day one thru IV.

    The radiation was really rough on my super sensitive skin. I found it helps to ask the nurses for guidance on the ointments allowed and when to best apply them. The sitz bath held tremendously.

    Best of luck, it took me a good year to get to a place where I felt truly healed. But each of us is different and so is each cancer diagnosis even the same stage cancer can be in different areas and some treatment is harder than others. It's all meant to help us keep living, so on we go!


    Good luck

  • smr7059
    smr7059 Member Posts: 14 Member
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    Thank you for you quick response. The one thing I didn’t mention is that my cancer is on the outside of my body, near the anal opening & looks like a raw sore with 3 small white spots. Those small spots are the cancer. I’ve had this for several months & tried everything thinking it was just a sore. Finally, my PCP referred me to a Rectal Surgeon & he biopsied these spots, & they were cancerous. Do you know if most anal cancers are internal or external. Thanks.

  • Rebar
    Rebar Member Posts: 30 Member
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    This is what we want to hear! Sounds like you have taken the same attitude as me, I WILL BEAT THIS!,

    Props for you on the marathon, I've thought about either working out lightly or running myself, even though I'm not through all the treatments, ( 1 Chemo left) mainly to get some of the muscle back that I lost, and also to kick up my appetite.


    Good luck to you in your journey, you're doing it right!

  • Rebar
    Rebar Member Posts: 30 Member
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    I also had external signs, more like hemmorhoiods but a lot more painful.

    And they were biopsied and positive for Stage IV anal carcinoma here.

    After 3 chemo treatments 3 weeks apart and supplemented with RSO taken nightly, I have eliminated the exterior bumps completely, just a bit of rough skin there now. All pain gone, able to sleep finally.

    Latest scan after #3 indicated almost a 50% reduction on all internal spots, there's 5 or 6 internally.

    I'm not sure of the numbers on the interior/exterior, I was lucky enough to have both to deal with.

    And I am definitely dealing with them agressively.

    Today was chemo #5, one more to go in 3 weeks.


    They initially said no surgery, no radiation, and I am grateful for that. Hopefully I can avoid those 2 all together.

    At this point my only symptoms are fatigue/lethargy and a nice blend of neuropothy, mainly in the fingers with a touch of it on my toes. I had them cut back on the docetaxel, a known cause of neuropothy.

  • Nutmeg1
    Nutmeg1 Member Posts: 21 Member
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    Hi Rebar

    I think you are doing great. With all that you are going through, I hope you are able to get the rest that is needed with the treatment. You sound like you are managing to juggle all that is coming your way.

    So brave. We have to be :)

    Praying for you x

  • Nutmeg1
    Nutmeg1 Member Posts: 21 Member
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    Hang in there, wading through everything is stressful. I found that with finding out about having cancer and knowing that I only had one life, everything that I'd been through that had upset and hurt me came bubbling up to the surface in my mind and heart. I just had to deal with all the things I'd pushed away and buried.

    I saw the cancer psychologist weekly then, fortnightly for a very long time, way after my treatment stopped. Having her to talk to was great. So I hope you too, have someone to help you get through the issues that are 'bubbling up'.

    Kind words of encouragement, helped me steer my way through the tough decisions I had to make. I had to make changes. I had to do the things that I had put off. I have made decisions to better look after myself all because my life was abruptly interrupted by cancer.

    You will get through this. 😍

  • smr7059
    smr7059 Member Posts: 14 Member
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    I appreciate your kind words of advice & encouragement. I definitely agree that this diagnosis is life changing, but thankfully, I am blessed to have a very supportive Husband & Family that will help me through this. Tomorrow, my treatment starts & I'm nervous to say the least. I know that with the support of my Family & all the people who are on this site, I'll have all the help I need. It sounds like you received the help you needed & you're now doing well. Take Care of yourself & continue to stay healthy.

  • mbnm59
    mbnm59 Member Posts: 3 Member
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    Hey, Its great to hear that you are running again, and training for a marathon after your ordeal. Thanks for sharing the nitty gritty details. Any kind of physical training is good for body mind and spirit. I just finished treatment three weeks ago, and can't wait to get back on the trail.