Need sharing on Aggressive Chemo exp. (24hrs x 5days at every 21days)

alicetong
alicetong Member Posts: 2
in Lymphoma (Hodgkin and Non-Hodgkin) #1

Dear Survivors,

I am a Stage 3 Aggressive Diffuse Large B-Cell Lymphoma survivor, just declared remission on March 22nd, 2015. (YAY!) It was a long battle, approx. 8 months as I had additional Chemo treatments to lower my chances of relapses. 

Anyway, during my Chemotherapy (24hours infusion x 5days at every 21days) I had some experiences and would like to know if any of you had the same experiences. I had the privilege of receiving treatment from 2 different amazing hospitals, one in Southern California and another in Northern California.  Both insistutions have the best care and doctors to attend my diagnoses. I am forever grateful to their services. However, one thing did bother me while I was receving my treatment, was the inability to have proper clothing during treatment. I was constantly cold and in need of a jacket/sweather, but because I had a PICC and tethered to an infusion pump, I couldn't properly put on anything with a sleeve. 

Did any of you had the same experience? and how did you solve the tethering problem? 

By the 4th round, I started to wear my own clean clothes to overnight treatments and that made me feel a whole lot better to wearing a hospital gown. One thing remain, after my vomiting session, I couldn't get out of my clothes until the nurse changed the bag of Chemo. I remembered the nurses said, it is advised not to unhook for clothes change because it induces chances of infection and also Chemo is toxic. 

Did any of you heard of the same advise? or were you able to get your nurse to unhook you for clothes change?

it really bothered me that I couldn't get out of my clothes as I see fit. I honestly believe I have the right to clean clothes. (By that point, I never thought changing clothes is a privilege!) So I started to think in my head, how can I overcome this problem. I began taking my husband's unwanted clothes apart and found a way. I made my first sweatshirt that I could interchange in and out of while tethered to the infusion pump! I loved it cause it kept me warm during the day and if I felt hot, I could easily remove it on my own. I felt like I was in charge again. 

The reason why I am asking all these questions and telling you about the sweatshirt I made is because I am trying to see if there is a need for my sweatshirt. 

If you can think back to your days of overnight treatment (sorry that I have to dig that out of you... I know those were hard days)  and answer the following questions:

1) Were you able to change clothese while tethered to infusion pump

- For PORT patients, as you are limited to one type of clothing, open neck and open front clothing, do you see a need for something more convenient for access and can hide your PORT? 

2) If you were cold, what was offered to you from the hospital staff?

3) Did the hospital staff unhook you from the infusion pump for changing of clothes?

4) Do you believe clothes had an affect on your wellbeing at the hospital? I strongly believe there is because I started to walk around more while I was in my sweatshirt because I felt warm, covered up and normal.

5) If you were told you can wear your own clothes to overnight treatments, would you do it? what would you bring?

Thank you all for your input and I wish you all a Happy 4th of July.

Regards

Alice

Comments

  • Max Former Hodgkins Stage 3
    Max Former Hodgkins Stage 3 Member Posts: 3,819 Member
    #2
    Access

    Alice,

    I had a port during my six months of treatment, and access was never an issue. Always easy and private.  At least as "private" as any medical proceedure, where privacy is usually a low priority.  It was irrelevant what I wore to treatments.  I took a friend with a PICC line for chemo for months prior to his passing, and access and privacy were never problems for him either.

    Your team's advice about not disconnecting the IV line after it began sounds correct and reasonable to me.  Many chemo drugs are VESICANTS, or blister agents, and extremely dangerous to handle.

    My neighbor did a treatment schedule similiar to yours, as an impatient, and was never dressed in a anything but a hospital gown during his hospital stays, but he was at best semi-conscious most of the time, and could not care less about privacy at the time.

    The good news is that it is over and was successful, so the drugs gave you your life back.

     

    max

  • Rocquie
    Rocquie Member Posts: 869 Member
    #3
    Clothing

    Welcome to the group, Alice, and congratulations on your remission. 

    I was hospitalized 3 times, once for 5 days, once for 2 weeks, and another time for 8 days. Other than times I was requested to wear a hospital gown for tests or procedures, I wore my own clothes. 

    My own clothing choices were cute pajama pants which provided warmth, comfort, and modesty. Topped with tank tops or camisoles which provided full access to my chest and arms. Once, I had a newly implanted port on one side of my chest and an open wound on the other side where an infected port had been removed. At the same time, I had an axillary surgical wound from a biopsy. Additionally, I had IV's in both arms. My husband bought me a beautiful and soft shawl I could wear over my shoulders. 

    Between medication changes, the nurses would clamp off my line for bathing and clothing changes. When I was cold, the thermostat in my room could be adjusted  and I was provided with warm blankets. 

    After a few bumps in the road, the remainder of my infusions were done at my oncology clinic. Clothing to provide access to my port was never a problem. Nor did I ever dress to hide it. 

    I'm glad your sweatshirt made you feel better and again, congratulations on your remission.

    Blessings,

    Rocquie

     

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