anal cancer

13

Comments

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    #42

    Dear Cinderthistle: I'm glad you finally have a set date for Chemo treatment to start!! Gosh it seems like its taken forever - the last date written down in calendar was July 31st which was consultation only I think? Not having had a "Port" for Chemo, I have nothing of value to share on the topic of keeping the site free from infection. Could you refresh my memory, how many weeks will the infusions of Chemo be? Its once per week, but for how many weeks? I couldn't believe it when I read Mak1970's post that she has had to wear her Port for all this time?? What on Earth?? Cancer is such an ugly monster to bring these brutal treatments upon us!!! My energy has now returned and my motivation for cleaning the house, which is good because I have set the course for purging 17 years of accumulated "stuff" in order to put the house on the market. I love this place, but my 72 year old body is no longer up to all the yard work which is endless!! I am thinking of moving to Windsor for several reasons, not the least of which is to be closer to medical help should the cancer creep back in, the clinic will only be a taxi ride away. The Ambassador Bridge into Detroil across the Detroit River is also a beautiful reason to move there and I've had so many possitive experiences even with complete strangers being so friendly! A happy place to be after all this misery. Prayers and Supplications to you and Mak1970. God is with us!!

  • cinderthistle
    cinderthistle CSN Member Posts: 24 Member
    #43

    Hi mak1970——I'm having a hard time today and yesterday. Am anxious about the upcoming port procedure on Fri. I printed a copy of your above comment to take with me so I can ask about everything you mention. Thank you for all of it. I have trouble staying in the moment; keep looking ahead and wondering if I'll make it thru treatment, if I'll be able to take care of myself. Have scheduled an appt with the social worker for cancer patients (I forget what she's called). Hoping for a little support.

    Kittpugh asked about my chemo treatments, but the truth is I don't know yet what to expect. I was given pages and pages of drug info, and the actual treatments begin sometime in mid-Sept. It all seems like so much, and then there's radiation, whenever that starts.

    I do use "One day at a time," suggested by several comments. For me it's really about one moment at a time—-that's where I find some peace.

    I don't have much more to say; just felt the need to post my feelings. You know, let a little light shine on them? Bye for now.

  • mak1970
    mak1970 CSN Member Posts: 41 Member
    #44

    Hello! Your feelings are 100% valid so please feel free to keep posting. I will be your cheerleader and want to keep you positive. You are stronger than you realize, which is good because you need to be now more than ever. You will make it through treatment; you have no choice because you must but there may be times it gets difficult. Not sure if you can sign up for the Road to Recovery (to get a ride to treatments)- this may help you out at least once in a while. If you are doing the 5fu, it is a pump they set you up and send it home with with you. Very awkward, definitely make sure you are stocked up and can stay home. I was lucky mine were scheduled over the weekend so I did not even have to go to radiation with it.
    You should focus on the positive, worrying at this point is just a bad way to be. I watched a lot of tv, and not much else. Anyway, please feel free to keep posting.

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    edited August 21 #45

    Dear Cinderthistle: I wish I could help in supplying more info on what to expect, but the treatment is out of my realm of experience and Mak1970 is able to relate more than I. The thing that she said that I would echo is that your strength will come from the fact that you NEED to DO THIS, there is no choice, you can't go back. It's damn the torpedo, full steam ahead. And yes, lots of TV viewing, often dozing off, which is 100% a good thing as your body is hard at work repairing itself continually. I wish I knew your location, but I know that isn't an option. You are on a daily prayer time list with 2 gals that take prayer very seriously, one is my friend in Windsor together with her friend Joy, in the States. And me, of course. I can relate to your "moment by moment" and it is perfectly understandable, especially prior to actual treatment. Once treatment starts, the routines will help ease the panic that you now experience. One thing I can add, because I love my music, listening to it on my Classic iPod, I picked out a playlist that was particularly calming and especially at night going off to sleep, I would listen to my own brand of music therapy. [Content removed by CSN Support] God be with you Cinderthistle.

  • cinderthistle
    cinderthistle CSN Member Posts: 24 Member
    #46

    mak1970 and kittpugh—-I just wanted to say Thank You to you both. Your comments give me courage and hope. So uplifting. You're always in my prayers. Will let you know how it goes.

  • cinderthistle
    cinderthistle CSN Member Posts: 24 Member
    #47

    I got the chemo port! The procedure went very well; the medical professionals who took me thru it all were so good at what they did, worked so well together, and treated me with respect and care. They were wonderful, and I was impressed at how coordinated they were and still took time to be gentle with me. It took about 4 hrs from start to finish. Now I have somethings taped to my right upper chest and neck. Also instrux on how and when to remove them. No pain; doesn't get in the way of clothes.

    Thank you for easing me thru the time leading up to it. I'm beginning to feel capable of going thru the whole cancer thing. Thank you for your prayers; mine are with you.

    Next Thursday, PET scan. Bye for now!

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    #48

    Dear Cinderthistle: That is wonderful news and I can tell just from chosen words "worked so well together", "treated me with respect and care", "still took time to be gentle with me"……I believe is God at work in your life as it was in my days of treatment. It's like a silk glove! Hip, hip, horray!!! Like the sun coming out from behind a dark cloud. I'll have to Google an image of a Port as I really have no idea. And I'm so glad to learn that it isn't getting in the way of your clothing. Just a quick letter here. God continue to be with you.

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    #49

    Dear Cinderthistle: I trust that the PET scan was accomplished relatively easily on Thursday Aug. 28. I'm now at the point where I can say something silly like, "it's only a PET Scan" or "it's only an MRI" as if these became so minor compared to biopsies or colonoscopies!! No more guzzling down a litre of Barium-Sulfate! or even fast for particularly long period of time. Yet our doctors rely on the scan information for staging our treatment and scrutinize every minute detail for our good! The whole month of September for me

    is nearly back to back doctor appointments as follow up scans and results are discussed at this 12 week stage. I'll be sure to give you an update as I'm hoping for more good news. Still feeling very good. Lots of energy, etc. You will get here, that is my deepest prayer for you! I have written your dates in my calendar - Sept. 4 biopsy on lung, Sept. 8, begins your Chemotherapy (I'll be on the surgical table this day for a mini Colonoscopy which is called a Sigmoidoscopy for only the lower rectum and the Barium-Sulfate drink is not required, Yahoo!) God be with you!

  • cinderthistle
    cinderthistle CSN Member Posts: 24 Member
    #50

    Kittpugh—-Thank you for thinking of me. I am truly touched by the way people care on this Network.

    Last week was the most difficult so far: I experienced such an anxiety that I felt frozen. I canceled my PET scan. Spent the morning on the phone with friends and the social worker from the hospital. I am so touched, kittpugh, that you remembered the date, and I feel ashamed that I didn't do the scan. Later I was able to reschedule it, and the social worker is helping me to make it to the biopsy this week.

    This anxiety has been growing from when I found out about the cancer. Now it's absolutely crippling. Normally I can manage my emotions. I have meditated for many years and have good tools for finding peace in most moments. But the ferocity of this anxiety is overwhelming. Please pray for me; I need strength.

    I am glad to hear your good news. To get your energy back sounds wonderful, and to know you are coming into real recovery. God bless you, kittpugh, and all of you.

  • mak1970
    mak1970 CSN Member Posts: 41 Member
    #51

    Hi cinderthistle: it was great that you posted yesterday, as I was just thinking about you. One year ago on Labor Day (although the date was different) I was on my sofa with my chemo bag and the Tuesday after,I went for my first radiation treatment- it seems like a lifetime ago, and in a weird way it was a different life. I said I would be a cheerleader, but I also must be bad cop at this point- if you find this is not helpful, please let me know and I will stop posting here. While I can understand your fear and anxiety, you cannot have it now. You need all your strength and energy to fight the cancer. You will not win if you think it is going to beat you. It’s too late for shame and guilt as well. I am glad you rescheduled, but you cannot let this happen again. You are in for the fight of your life, but you will find that you are stronger than you know. You did not choose this, you do not deserve this, but now your only objective has to be fighting and curing and healing. YOU CAN DO THIS! All my love and prayers! P.S. I did spend time crying.

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    #52

    Dear Mak1970 and Cinderthistle: Agreed, Agreed, Agreed!!! Your post, Mak1970 makes me stronger, even though I'm further along. But gosh, it really helps having "Sister Survivors" to articulate what our hearts are whispering in silence, the negatives as well as the positives! I don't know your situation, whether you too are alone as Cinderthistle and I are. So having your voice and your strength is music to the ears!! I'm only sorry that I didn't pick up on the fact that Cinderthistle's anxiety had reached a pinnacle of such immobilizing distress. And I can't "quote" or it will be censored, I found that out. But sometimes the word "surrender" is used as a strategy for fighting through difficult times and receiving a measure of calm in the face of adversity. If you know what I mean? I'll leave it there. God be with you both!!

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    #53

    God be with you today Cinderthistle for your lung biopsy! You can do this girl!! Much Love and Prayers!!

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    #54

    Dear Cinderthistle: Hoping you got through your day intact! I don't know when the PET scan has been rescheduled for so I'm just going to give a few suggestions while they are fresh in my mind. There's no discomfort with this scan, other than having to keep perfectly still while in the "Tube" so don't allow your body to tell your mind that there's tickle that needs scratching! Perfectly still - that's the order of the day. If you wear a sports bra type that has no metal fasteners or parts, you won't have to undress at all. Bring a sweater and some socks for warmth, but you can even keep your shoes on in the Tube if you want. The nurse will also provide heated flannel sheets which are wonderful! God be with you each day of your journey. Lots of Love!

  • cinderthistle
    cinderthistle CSN Member Posts: 24 Member
    #55

    Hello Kittpugh! —-Thank you so much for your posts; they feel like a hug. Yesterday's biopsy went well. Much wait time before the procedure but the medical people once again were so careful of every detail, worked quickly and smoothly, and still had time to talk to me.

    Kittpugh, you've been wonderful to remember my hospital dates. Thank you. The PET is Friday the 12th. Your comments about it are helpful; I'll use them. Chemo begins Monday, I think.

    I'm glad that you mention getting back to cleaning your house. I haven't done any deep cleaning since after Christmas last year. Thought I was the only one.

    I'm beginning to see my bouts with anxiety as preceding my accepting the next stage in life with cancer. I'm terrifically grateful for the people around me who allow me to feel, who let me rant, cry, and gesticulate. They help me to vent and then move on to the next step. Yes, "surrender" is a useful word; I also use "let go."

    God bless everyone who has cancer and carry us thru it. Do you all know "Footsteps in the Sand?"

    Cheers!

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    #56

    Hello Cinderthistle: Thank you for your post and kind words! Your post felt like a warm hug to me too! Can never get enough hugs, right! And the news about the care and compassion of the medical staff doing your biopsy was wonderful! May it continue. Yes, I know "Footprints In The Sand" by Mary Stevenson (1922-1999) just think of how many people she inspired, comforted, and brought strength to through their darkest hours! God knows! But each of us going through treatment or tragedy, trial or temptation, can be a beacon of light for another living soul and it doesn't matter the numbers. I love the words "all knit together". I thought I understood your anxiety, but I truly failed to realize the intensity of it until now. You have set me straight. I worried about the PET scan being delayed, but I think it has more to do with the Radiation part of treatment than it does with the Chemotherapy, which should be starting this Monday, Sept. 8th. I want you to have as easy a time with your chemo as I did, but I think I might be the exception rather than the rule. Oddly enough, the worst nausea I had was when given so called pain killer capsules of Hydromorphine to help me through the following 2 weeks after the Radiation treatment stopped. These capsules were supposed to help, but they were the worst. I quickly asked for another type of pain killer that had no nausea side effect. How weird is that?!!! So keep me posted how you are feeling. God be with you.

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    #57

    Dear Cinderthistle: Just a really quick HELLO But don't feel pressured to respond because starting your Chemo might just have sent you under the covers with nausea. I totally understand that I might not hear from you very often and that is perfectly acceptable. Just know I'm thinking of you with prayers daily. God be with you.

  • cinderthistle
    cinderthistle CSN Member Posts: 24 Member
    #58

    Thank you Kittpugh! Yes, I've been sick. Yesterday (Wed) was the worst. Today I'm up and about but don't feel well enough to do anything. I keep trying to do a load of laundry and can't! I'm having to let go of a lot of things, like cleaning my house, and just be. And it's still possible for me to find much to be grateful for in this moment: I'm not in pain, for one.

    Tomorrow is the PET scan. I'm not worried about it. Monday I go to Chemo again but only for labs. The following Monday, I'll get the regular treatment plus something called a pump. Then 2 days later I return to have it removed. Do you know what this pump is?

    Well, that's all I have to say. Know that I keep praying . . . for everyone with cancer. We all need it. Cheers!

  • kittpugh
    kittpugh CSN Member Posts: 27 Member
    #59

    Dear Cinderthistle: If you told me that the thrill of doing laundry and housework at this stage of development was front and centre in your thoughts, I would send for the men in the white coats!!! Lol! As for the Pump, we need to ask Mak1970. I reviewed a few online videos, but I wouldn't know which of them would hit the mark or simply add more stress than is healthy. I understand the concept which is to feed the body continuously at a safe and effective rate. One comment was that the method can reduce the side effects because its such a measured dose that the body will adjust to. The concerns for the wearer of the pump was how to sleep t comfortably (do you need to elevate your arm with a pillow) how to shower (what means do you have to keep the pump outside the shower curtain and yet high enough for movement because the line isn't terribly long) and how to make light of a less-than-perfect world for the duration of the treatments. I was given the best news this week - first, Monday Sept. 8th, waking up after the Sigmoidoscopy surgery and seeing the paper next to the bed where the doctor had written the word "NORMAL"! In other words, she didn't find anything to biopsy. Second, today, Friday Sept. 12th, the doctor who ordered the MRI called me and gave me the ALL CLEAR results! I have no reason to think that come Sept. 23rd when I'll be seeing the 3rd and last doctor who ordered the PET Scan, there will be anything but another ALL CLEAR result! HALLELUJAH! Praise the Lord! I made it through with helps that came from out of the blue! Prayers, drivers, caretakers, you name it, He met my every need and then some!! I'm keeping the faith for you in prayer. God be with you Cinderthistle.

  • cinderthistle
    cinderthistle CSN Member Posts: 24 Member
    #60

    Kittpugh—-Thank you for answering so quickly, but I didn't want you to do all that research. I wondered if you'd had the experience of the pump. Will ask mak1970.

    Just this morning , I realized that until now I'd been self-centered about my situation and didn't know much about yours. I'm so sorry. To hear all your good news is wonderful. Congratulations on making it thru the suffering and pain. To read all the outcomes of the tests is so uplifting! I'm rereading it because it gives me hope.

    Can you tell me a little about your cancer? —-Only if you're comfortable doing it, of course. Enjoy your healing!

  • mak1970
    mak1970 CSN Member Posts: 41 Member
    #61
    https://csn.cancer.org/discussion/comment/1724387#Comment_1724387

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