Vulnerability

Remember those Kitchy commercials for Life-Line?  The little old lady is lying on the floor, pressing her emergency button, squalling “I’ve fallen, and I can’t get up!”

They were so over-the top and silly, I think many of us just regarded them almost entirely as a joke.  But, I also had to give pause.  The dramatic ability of the actress involved notwithstanding, if you think about her predicament, it has to be terrifying.  Here she is home alone, she has fallen and literally cannot get up!  She needs help.

If you go deeper, you start to think, “this woman took care of herself and probably her whole family throughout her adult life and now she is dependent on a voice at the end of an electronic tether to keep her safe and alive.”  The frustration and fear involved in that moment….. I am not happy being forced to relate to it in a more tangible way.

I think most of us younger folks assume that is something we will not be facing for a good long time.  But, lately I have been getting a little glimpse into that sort of vulnerability and need for support, and it is rather daunting.  I have *great* support in the family.  But, no one likes to feel dependent.

The Buses

My main antagonist right now seems to be the Over-filled Bromley Buses- especially about the time when all the schools are getting out.  They are often just jostly and folks are just shoving in to find spots- and when the school-kids get out, apparently the daily routine is to get a small bucket of chicken with ketchup which, despite the rules, they all eat on the bus.  Wave after wave of them..  I get claustrophobic and have to seriously chill to avoid panic attacks sometimes when everything is coming at me.   But, all of that isn’t really the Issue.

The real problem comes on days like yesterday.

Audric and I were on our way to my Doctor’s appointment at the hospital.  It was School Rush Hour.  But, the bus we were getting on looked OK at first glance.   Unfortunately, it wasn’t.  As I stepped on and people behind me started pushing through, I realized that there was literally nowhere for me to sit.  And, the driver started driving, so I had to clamp onto the railings and try to keep my balance, which is honestly not great.  I was grasping hold of two hand rails trying not to fall over and I was completely stymied.  I couldn’t move forward, I couldn’t wedge myself safely.  I was just in the middle of the row clinging on and hoping I didn’t fall over, hurt myself and make a scene.  I literally stood there for a moment just saying “Oh no…. Oh crap”.  I had only enough focus to hold on as tightly as my weakened muscles could hold and hope it resolved somehow.

Luckily, I had Audric with me.  He quickly turned to a young woman sitting in one of the priority seats and asked her if she would move so his mother could sit down.  To her credit, she immediately assessed the situation and gave up her seat without further ado.  Once I was sitting down, I was much better.  But, I won’t lie.  For a moment there I felt completely vulnerable panicked and afraid.  And, afterwards, when we got home I had a good cry.  It is insane-making to be a full-grown woman who needs a teenager to find her a seat on the bus.  Feeling vulnerable SUCKS.  Plus, there are times when I will have to take the bus alone to get to appointments.  Most of the time it isn’t an issue.  But, when it is full like that and I am not prepared well enough….. yeah, that is a problem.

Stairs

The other big issue has been the stairs in our house.  The GOOD news is that they made a medication change that has really made the fainting stuff take a background, knock wood.  I get slightly light-headed now.  But it has been a week since I went down.  That is great.  They will be sending an occupational therapy team to check out our house and see if there are like railings and such they can add to give me a layer of security when everyone is away.  It will only be a couple days per week through the rest of the school year.  But, no one wants me to hurt myself, so we wanna shore that up as much as we can.  Unfortunately, the house is set up with the kitchen downstairs and the toilet and bedroom upstairs.  We have talked about getting me like a little dorm fridge for upstairs, but I don’t like the idea of the noise and warmth- especially through the spring and summer.  I think we can wait and see if I am having trouble again, and revisit that then.  For now, knock wood, I am doing well– weller than in recent weeks by a long shot.  So, gonna take it slow and see how that goes.

Other Medical and Appointments:

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Barium Sulfate FTW

Right now my Calendar book is just wildly full.   Every single day seems to have at least one appointment- most of them medical.  On the agenda this month we have:

  • Another Lymph evaluation (which since I lost 30 pounds will probably be good with my compression sleeve)
  • Occupational Therapy assessment
  • Psych Counselor check in (seems prudent)
  • MRI 8AM…. who cruelly sets these things up
  • CT  (they seriously sent me a bottle of Barium just in the mail….. Like HI here is barium!  Take this in a month.  Ta!)
  • HOPEFULLY the Dental scan, since I still can’t take the bone meds until they get that arranged and bone health is a good thing-  THOUGH, they have checked my calcium and it is good, so that is a comfort.  High calcium levels can be a real issue, so we want to avoid that.
  • Possibly some sort of day program I can go to while the kids are at school….. another one of those “omg, too soon, too vulnerable” things, but trying to be practical about it…. when I *am* having issues, it would be good to have backup.  I am hoping that it won’t be a cringe-worthy place, but will just be somewhere I can hang out for a few hours a couple times a week.  I think they have like crafts and a pool and things like that, but will need to check it out…. Some of this stuff gets overwhelming.
  • More just general check ins with Chemo Docs & Macmillan Nurses etc…. cause I always always have those appointments (to be honest, the nurses are the better deal- much better attitude and time to sit and figure out what is actually going on when there is anything slightly hinky)

Additionally, the REST of the family has medical crap.

  • Braces for Audric
  • Eye check for Audric
  • A sebum cyst for David (cause bodies and just weird)
  • Diabetic Eye check for David (did that one already but adds to our monthly count)
  • etc etc etc…..  Allll the things.

BUT, then comes all the FUN STUFF

  • Today we buy Audric’s SCHOOL UNIFORMS!!!!  They will be black and stylish and I can’t wait to post photos.  He starts officially on Thursday, but has a placement test on Monday.  After 5-7 months (depending on how you count) he will FINALLY be in an English School.  He is in Reynold’s House at Forest Hills Boy’s School….  His house color is Blue.  And, yes, it is like the most British Thing Ever.  Gonna be interesting, but hopefully educational, too.  Definitely going to make us stick to a more rigid schedule.  Lots of adjustments coming up.
  • Raquel and Malia come in just ONE WEEK for a whole week!  I AM SO EXCITED!
  • I WILL get a Henna Crown! How pampering and fun, eh?  I haven’t really done anything even tangentially like this since High School, I think…  all, beautifying and just chilling to look perty.  Bald is beautiful baby- especially if you get to wear a crown 🙂 I am getting excited!   http://www.riffat.co.uk/gallery-2/henna/creative-henna/nggallery/page/1
  • Morgaine’s Birthday is the 23rd and we will go out to Awesome Japanese Food, knock wood.
  • Audric’s birthday is the 3rd.… Not sure what we are doing on that one, but another opportunity to party seems good!
  • Kerstin is coming in May!
  • Mom and Mark will be here July
  • I am really happy about having all these visitors- even if I have to stash them in hotels and AirB&B…. Wish our house were more accommodating.
  • For Mother’s Day I have requested a patio chair and table so I can go out and enjoy some sun because……
  • SPRING has SPRUNG and Audric and I have been starting to get some plants out to look nice.  WE have a lovely Thyme- which is our favorite herb.  And …. ummm I am so bad I can’t tell if we got pansies or violas… I think pansies.   And then…. ummmm… You can SOOO tell why I have a black thumb…. There is another plant.  It will be pretty when it blooms 🙂
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That Thyme smells AMAZING
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Color! Green! Purple!

 

9 comments

  1. Soooo glad the visitors are coming! Would that England weren’t so far away and all who love you could work out a groovy support schedule. Stupid cancer. But first things first, let’s take care of that chicken and ketchup thing–because, really, how much are you supposed to endure?! 😉

    Love you, cousin! XOXOXO

    1. The chicken and ketchup thing is remakably pervasive… And the chicken is like soggy and greasy, too…. Not even nice and crispy.

  2. So glad the fainting thing is better. Just speak up in the bus. Hey I’ve got a medical condition. Could somebody give me a seat. ( I know that kind of thing is tough for you, but it’s better than the alternatives. ) I look forward to the henna crown. Talked to some young woman yesterday who had a tattoo around her arm that began life as a henna design and she liked it so much that she made it permanent. ( Maybe I should tell that story where your head is concerned..

    1. I do, actually, ask for the priority seats- though usually if I just whip off my hat and show some scalp people get the idea quickly. Bald chick for the win! In this case I just happened to get stuck in a way where I had to hold on in a mild panic and couldnt easily find or maneuver to a seat. My Visibility was very impaired by the fact I was holding on like a baby koala in a windstorm. All I could do was try not to go down in the aisle until the bus stopped jerking… Without Audric and his ability to see and ask for the seat, it would have been a touch and go situation. As it was, it just scared me and made me feel unempowered in ways I really would not deal with on a daily basis…..

  3. Stephanie, I hate what you have to write about, but I love your writing. Can’t wait to see Audric is his spiffy British togs and am really excited about the Henna crown. Hugs!

    1. Daw… Hopefully it isn’t all grim…. I try to share th weird, the good, the bad and the interesting. Just like with everything else, each daynis a mixed bag… I just have sort of a unique situation to sift through. But, I am hoping enough of it is relatwble thwt it can both inform and support other folks who may have similar situations to go through…..
      Love you, Cheryl!

      1. It makes me feel glad for you that the new meds make you less unstable. And I have hopes that there is a way to make the stairs safer for you. You have a busy time and a good list of folks who will be dropping by. Your flowers and herbs are lovely. Thank Audric for taking care of his Mom. Love you, Mom

  4. While I certainly wish you and your family didn’t have to go through all of this, I know God is using this for great blessing. Your wonderful attitude, positive outlook, and intact sense of humor are inspiring and are doing all of us a world of good. You may not be able to see the impact you’re having on those who know you, but let me assure you that you are. Thank you for taking the energy and time you have to keep us all apprised. It’s truly a blessing.

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