“You're braver than you believe, stronger than you seem and smarter than you think.” - Christopher Robin
I thought I was sad and depressed, but I’m not, it’s worse, I’m melancholy & indifferent.
I don’t know how much I can take anymore. I’d like to have my mind right before my PET scan next week.
So many problems and feelings have just been accumulating for so long that now one big misstep by someone and a few little inconveniences almost have me TKO’d.
I don’t know how much more I can take. I’ve lost count of what round I was on.
I coped with the holidays. I hid the devastation that I could not see my nieces and nephews even though there would never have been a Christmas for them without us. I thought someone would show some respect for what we did and find a way to include me despite my disability, but they didn’t.
That family has made it very clear where I stand with them. I’m not welcome in their pictures or at their holidays.
I think it’s time I just stopped trying to make such an effort.
I’ve been broken physically, emotionally, and financially. I’ve tried to call everyone who might bring me up.
I’ve made plans and had friends over. I’ve spent time with my son. I tried to remember that I’m getting some GREAT party invitations (like to the Premier of Notorious), and that if I stick it out, I can go back to being a Manhattanite.
I tried to talk to my husband who reacted the way he always does, by getting angry at either me, himself, or the situation, and then leaving in a huff. I can never guess which one it will be, and he certainly doesn’t tell me.
All I really wanted was to be held and told everything would be okay. It’d be nice if I could, for once, cry in the safety of someone’s arms, but I just haven’t formulated my life like this. The ones I want to show me this love are the first to reject it.
How did I get myself in this position? I try to be interesting and dynamic within my physical means, but that won’t get you what you want in the end, which is just to have someone lie with you in their arms while you cry. Maybe they could tell you everything was going to be all right or that this really wouldn’t go on forever, or even that it’s okay to cry and let your feelings out.
But at my worst, I always find myself alone.
This doesn’t sound like the hard up, tough me I show, but deep down, I think this is what we are all searching for, someone to love us, hold us, and hear what we have to say without judgment and accept us with love unconditionally.
Who has this anymore? Is this a figment of my imagination? Is this some fairytale phenomena that is seen on TV? Maybe it’s an equation like Einstein’s E=MC2, that makes sense but it will never happen.
I was doing okay dealing with all I’ve lost for a while, as long as everything remained copasetic I could too.
But I knew life couldn’t go on like that forever, I would eventually hit a snag in the road and end up in a place in cancerland that nobody understands.
I knew I’d feel alone and abandoned by my supports at that time. I knew no one would understand.
I really need someone to take care of me. I need someone to pick me up, and I haven’t ever found that person (except of course my sister, who lives far away now).
If I hurt so badly I can’t think, I don’t know where to go. I want to be told what to do and be able to trust the person giving the directions and I want help executing them.
It is so scary to not be able to think and then to have difficulty guiding yourself to receive care.
There is no one I can cry to who understands this. I know I am an adult, and am now, fundamentally in charge of myself in these times, but it’s just so hard and emotionally draining.
I say all this, but the reality is, in between when I decided I needed to go to the hospital and the time I actually had gotten in the car, I received three phone calls from people who knew nothing about what was happening: Heather, Colette, Deb and my aunt carol showed up at my door.
I think they are in tune with me, at least when something extremely problematic is occurring.
“I’m NOT lost, I’m on an Adventure”
A conversation with a doctor over the weekend shredded my confidence and the safety I once felt in a medical community.
Now I am questioning everyone and their intentions. I feel so lost.
I don’t think I’ll ever be able to retrieve that innocent naivety I had. I was probably foolish to think that people were actually looking out for me.
It’s my fault. I misbehaved in some way. I must have lost the respect I thought I had, somehow. Nobody has time for my problems, I’ve had too many for too long. They’re no longer interested.
My old NP, her unlucky self, had to call while I was crying over this, but I’m not her job anymore, I’m not her problem. It was silly of me to think that we may have been friends. I’m not a coworker, I’m a patient, I need to know my role and accept it. I need to be okay with the boundaries. I’ve been on the wrong side of treatment for too long now.
It’s okay everyone, I’ve now been effectively put in my place. I’m not allowed on the other side of the treatment table anymore.
I get it.
What happens when I can’t look out for myself anymore? I’ve lost everything.
I can’t remember what to do from minute to minute when I’m in pain so excruciating I want to die.
Never in my battle have I ever wanted to die. I’ve always understood this option was on the table and I was rejecting it.
What happens now? The gate has been opened and all the water has come flooding through, the same way the pain pathways have been opened and my brain has been sending messages to torture me each day. I thought I could deal with anything, but the debilitating pain in my head is too much. I want a solution. I need a solution, and before, I reach the point where I can’t cope anymore.
Where do I go from here? And who is going to help me get there?
Forget about who is going to fix my head, but who is going to fix the emotional pain?
The thoughts and tears have started to overwhelm me. I can deal with the events in the past I have missed, but the ones in the present are always hard.
People tell me “someday you’ll get back to your normal life,” but I’m beginning to be less and less confidant that someday will ever come.
I feel powerless. I feel week. I feel broken. I am so fragile.
I’ve been searching for something, anything, that could possibly make me feel better.
I’ve got nothing.
It’s so hard to see people run by at their fast pace and be left behind. It’s even harder to see this happen for years.
I try not to think of all I’ve lost to this disease. I tried to spin it to do some great work, but not even that is holding me together right now.
I have no degree. I have no respect. I have no recourse if someone wrongs me. I just have to lay back and take one slap across the face after the next, and now, I just can’t take it anymore.
Maybe some facebook time could help? But I don’t know.
Some studies have proven that as we become more technologically savvy and we trend away from face to face interactions though it appears we have many friends we truly have less close relationships and the lack of human contact contributes to a greater incidence of depression.
It was only a matter of time until my bubble burst and I faced this reality.
People do need to be hugged and touched to maintain their connection to the world. I’ve gone almost 100 days refusing any contact with anybody other than my child and husband and it has taken its toll on me. I need some hugs.
I think this period in time is especially hard since I am so close to the 100 day mark, but I don’t feel much different. I’m still experiencing random side effects, I’m still strictly isolated.
I know what’s coming. I’m going to hit the 100 days and everyone will rejoice and assume that everything is over, like a fairy just came along and overnight waved a magic wound and cured all my ailments.
That fairy never has and never will come. What happens at 100 days is that my immune system is safely engrafted and all the disease and issues I’ve experienced become chronic, lifelong side effects.
I may be able to go out in public if it is not too crowded, with my mask and gloves, but I will still have to be incredibly isolated.
Then many will be under the misconception that I am “fine” and life will resume the way it was.
I don’t even remember the way it was. That time was too long ago. I have had cancer since X was two, that life I had is gone. My RN license, that too is gone.
I don’t know exactly what life I’m going back to but it doesn’t matter as long as it’s a happy healthy one, I’ll settle and take that.
NOW, I’m going to settle myself down. I’m going to take a couple deep breaths. I’m going to take each minute as it comes. I’ll call my sister. I’ll take a shower. I’ll watch a funny movie (or the new Pacino/DeNiro flick, that will work too). I’m going to get myself together, and I am going to be just fine.
I think what I’m experiencing is probably common, though I’ve never heard anyone admit it before.
It’s just a bump in the road. It will be gone and hopefully forgotten sometime in the future. I’m just not seeing the world clearly right now.
“If you’re not laughing at life, you’re not getting the joke” -Anonymous
Baldies' Blog began originally in the UK by a 26 year old journalist with a blood cancer on a mission to inform the world about bone marrow donation.
He has since died, and I took on the cause of making cancer care more transparent for everybody.
Cancer is a disease that will touch everybody through diagnosis or affiliation: 1 in 2 men will be diagnosed and 1 in 3 woman will hear those words, "You Have Cancer."
I invite you to read how I feel along my journey and
how I am continuing to live a full life alongside my Hodgkin's lymphoma, with me controlling my cancer, not my cancer controlling me.
I hope that "Baldies' Blog" will prepare you to handle whatever life sends you, but especially if it's the message, "You Have Cancer."