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."

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Saturday, August 29, 2009

The worst side effect of cancer

I have decided after 3.5 years of long hard, heavy treatment, what the worst aspect about having cancer as a young adult is.

I think the answer may surprise people, because it really has nothing to do with the physical changes and suffering associated with my disease, at least not on a superficial level.

I could really be less concerned about the state of my hair or my skin when the stakes include my livelihood and life.

No, what is the absolute worst about my illness are the events and times it robs me of enjoying.

I say this is the worst because the hurt from missing life changing moments in my loved ones lives is always an open festering wound that never heals.

Every time another event comes along the sadness and the grief is the same, same level, same intensity as it was the very first time I experienced it years ago.

At least with pain and chemotherapy there is an end point or some relief that can be provided with sleep or medications.

With these emotional scars there is nothing that is seen and really nothing that can be treated.

So what do I do?

I go about my business and pretend I never really missed the events I wanted to attend or the times I wanted to play but had to lie in bed instead.

Eventually, I ignore them to the capacity that I forget. I send the would-be memories far back into the unconconscious of my brain along with the suffering from my first transplant where there is just some dark hole where I have no memories what so ever.

I used to question the existence of “regressed memories.”

I can tell you in confidence, they do exist.

I actually have a conscious hold on sending unwanted memories into oblivion where I say they will be dealt with when I get better.

Really, dealing with all the stress and losses that I have suffered NOW could wreak havoc.

The Stress response in a post transplant patient is poorly studied.

That’s if it has been studied at all, and my guess is it hasn’t.

Unfortunately, I don’t know if I will get to be the one to study this in the future even though it is a very significant and a geeky cool topic that I would LOVE to explore.

This goes alongside the memories I repress out of sadness and loss.

I certainly DO NOT EVER think about what I may have been doing, what could have been, etc., etc.

Those places are OFF LIMITS. They could definitely send me over the edge into one long lasting pity party from which there is no return to my sublime happiness of moment to moment living.

For these ideas, I write, hoping one day somebody will listen and say, “Hey, I am an idea-less researcher/med student/nurse who needs a really cool idea. I think I’ll use that one. Who doesn’t want to understand how the stress response relates to healing in the post stem cell transplantation patient?”

Off they will go with their little notepads to study patients like me.

I don’t know if I have to write my cases in point for the feelings I am expressing here, but to be sure we are clear one what I am saying, I grieve for missing large life events, like baby showers, baptisms, weddings, etc.

Those are all hard to lie in bed suffering through when I would like to be showing who ever I love that I support their decisions and will be beside them, but I can always just send a present.

Those events are usually so overwhelmed with people that getting quality time with the person of honor is impossible.

What I am really talking about grieving over the loss of are the simple things that I would do day-to-day, especially as a mother.

Not being able to be the mother as I always thought I would be is the most painful problem I have encountered.

For this there is no cure, just hope that eventually I will be well enough to have the activity tolerance to do what I would love to.

This hurt is multi-dimensional and constant when I am conscious enough to worry about it because everywhere you look are examples of what could have been or what should not be.

It is the only thing I think about and respond to the same as the first time I ever thought about it, with tears in my eyes and a lump in my throat.

I have finally stopped grieving for the years together we may not have, but I don’t think I’ll ever stop crying over what we’re missing now

1 comment:

Anonymous said...

As a mom to 3 young kids and fighting lymphoma for the last 6 years with chemo and a stem cell transplant I completely relate to what you have written!!!! The worst part of everything is missing my kids milestones....going to the 1st day of kindergarten, missing school plays and sports events. I can never get that back and it broke my heart. My daughter would tell me she loved me but wished she had a "NORMAL" mom to do the normal mom stuff....even just clothes shopping. You are right someone should analyze all the stresses of everyday life on a transplant patient not just the treatments and side effects. This evil disease effects all parts of our lives-physical, mental and just life in general. My husband divorced me during my illness and left me with the it hurt me twice as much to not be there for them.
I am now able to attend their sports and events and cherish each and everyone and take lots and lots of pictures hoping I can continue and remain in remission.
Sending lots of positive thoughts your way that soon you will be enjoying everyday life events and special times with your son. He is beautiful!! Keep smiling! Stay strong!!!!!
Hugs from
Donna H Boston Mass