Renovations, post pneumonia, legal wranglings and Actemra week 3

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It has been a hard week. Exhausting.

I replaced all the flooring in this house, to ready it for market. That process involved weeks of packing and moving things out to my garage and outside under my pergola.  The four days where the floors were actually replaced (new carpets and vinyl laid over tile) were utter mayhem. All the furniture in this house needed to be moved, either to a new room or out of the house entirely. Much of it needed to be dismantled.  Much of it is very heavy.

Those four days were hard physical work, and the house was full of noise and people and chemical smells.

Now the work is done, and all that remains is putting much of the furniture back where it belongs. That will take several more days, because I’m out of steam and I need people to help me. The kids can only manage small bursts.  But it will get done.  Eventually.

There is much more throwing out to be done. Seeing my house empty makes me realise despite not having very much, I still have way more than I need or want.  Some furniture will be sold. Some will be given away. Some was ruined when it was rained on and I need to find someone to dispose of it.

Pain levels have been high, because I am still recovering from pneumonia, and I wasn’t able to take my Actemra on time.  When I did take it, it didn’t have the same magic effect.  But I was still unwell, and I have had a lot of physical work to do.   I’m hoping after the next shot, when I can get back into a normal routine of rest and exercise my pain levels will improve.

Stress levels have been high because I have also been dealing with my complaint to the ACT Human Rights Commission against my surgeon and the private hospital where I had my total hysterectomy back in June.  I also spoke to a few lawyers.  One major firm said my case wasn’t worth fighting, but a middle tier firm will fight the case for me, despite the reality that, because I didn’t work before the surgery and I was already disabled, there wouldn’t be a large settlement.  There is no loss of future earnings to be compensated for, and so I am worth less as a legal case.

But I could fight the case.  On the principle of it.  I could.

But having spent a few days going back over everything, and feeling the effects that has had on me emotionally, I am not going to.

Remembering what happened to me, and what was done to me left me depressed for most of this week.  I’ve had nightmares, night terrors, fits of crying for no reason and I’ve felt worthless and isolated.

We trust our medical professionals with our lives. Literally trust them with our lives.  Not all of them can be trusted, not all of them will care for us.  And when we have surgery, we are at our most vulnerable. Unconscious.  Unaware.  And sometimes we wake up to a body wracked with immense pain and when no one believes that pain or takes it seriously, or tries to find the reason for it, people die.

I almost died.

The betrayal of every medical professional involved in my care has scarred me deeply. I don’t trust anyone, and I have cancelled other surgeries that were part of my treatment plan.  My GP can handle most of my medical care, I don’t want to see the array of specialists involved in my treatment anymore.  I don’t need my neurologist, cardiologist, endocrinologist, or immunologist.  I’m not sure about my gastroenterologist, I don’t think so.  I do need my rheumatologist, because only she can prescribe biologicals.  I need my psychologist.

The surgery was a before/after life changing experience.  I am torn by the need to make my surgeon answer for her negligence and the need to move on, and put it behind me.  I have struggled with it all week.   I have been depressed, sad and angry.  Not emotions I enjoy.

Finally, last night, I found a friend who was caring enough to talk about it with me.  Someone who could understand, who could share his own experience and opinions without making it about him.  Who helped me work through my feelings.  A rare friend indeed.

He helped me put a lot of things into perspective, which I hadn’t been able to do all week.  He also made me laugh, and nothing replenishes the soul like a good laugh.

It has been said to me that it’s my responsibility to bring her to account.  That if I don’t, she will hurt other people.  I’m not convinced that’s even remotely true.  Firstly, I am the injured party. The word ‘responsibility’ is pretty offensive.  Secondly, even if I sue her and she loses, her insurance will pay.  Yes, she will have higher premiums, it might hit her financial bottom line.  But will it change her?  From what I know of her from my own experience and the experiences of others, her arrogance will override any sense of responsibility and she will continue to practice medicine exactly the same way.  The case will be kept quiet, no one will ever know, so she will have no real incentive to change.  She has a proven record of poor post-op care.

If I could have my way, I would want her to be locked in a room in excruciating pain for five days and be ignored.  That’s the only thing that would teach her. It’s the only thing that would satisfy me.  And it is totally impossible.

I also know that I’d buckle and I’d stop her pain after an hour, maybe less. I wouldn’t be able to bear it.  So really, there is nothing that can change what happened to me, and there is nothing I can do to influence her future behaviour.

It has also been said to me that it can’t have been that bad, that I am exaggerating, if I don’t want to sue her.

Disbelief.  Dismissal.

Standard.

Medical negligence cases are hard to fight and they are hard to win.  The stress involved and the time involved…possibly the next three years of my life for an average $10,000 pay out are not worth it to me.  Yes, 10k is a lot of money. Especially when you live on a Disability Support Pension.

But that money will keep me trapped.  It will keep the experience current.  I won’t be able to move on. I won’t be able to improve.  I won’t be able to heal. I won’t be able to forget.

Is that worth it?

No.  It’s that simple.

She was negligent.  Unfortunately, the most easily proved negligence falls on my anaesthetist. He didn’t order post-op steroids, and ultimately that was his responsibility.  The massive haemorrhage is a complication of surgery. It can happen.  The fact that no one considered it as the cause of my pain and illness, and no one went looking for it, and no one treated it, is provable negligence. No blood work, no scans, nothing.

But will that responsibility fall on my surgeon? Probably not.  Her lawyers and the hospitals lawyers would play a game of ‘your fault!  No, YOUR fault!’.  Because the fault is clearly there, but who’s fault is it?  Who will pay?

I’m not going to spend the next three years of my life finding out.  In three years I want this to be a dim memory that has no influence on my everyday life.

It has changed me enough.  I’m trying to fix myself, I can’t do that if I have to keep revisiting and reliving the experience.

Because the medical negligence and recovery from the surgery are only one part of why the experience was so devastating.  The other part was that all my friends abandoned me.  I have sorted through the reasons why, some people were cruel, some made mistakes and some were the result of misunderstanding and miscommunication.  I have no interest in ever seeing most of my previous friends again.  All are forgiven, but only a very few are still in my life.  Forgiving does not necessarily mean that I want the friendship back.  It means I need to understand, and let go.

And that’s what I need to do with the medical side of the disaster as well.  Understand, and let go.

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