Says one thing, does another. What to do?

Mary here,

It's been a difficult few days.

Willie is starting to fail again, the long delay between chemo has taken a toll.

He's been cleared by 2 doctors, lung guy and infectious disease guy but his med onc seems to be throwing up brick walls.

At first, it was dependent on the response from lung guy, then we waited weeks to see infectious guy, who said chemo could resume. Both told Willie there's a chance that chemo could make his lung problems worse/cause a raging infection.

Willie felt better and was doing much better on the chemo and wants to give it another go round.

His med onc did not reply to our call earlier in the week, his nurse was 'dismissive' when she called me, simply distanced herself from it all and said it was the med oncs call and btw, he's going on vacation TODAY! Back late July!!!!

With some help from our GP, we were told late Friday that med onc would be reaching us by phone within an hour or so.

When he called, he stated that he'd arrange the chemo for early next week, had to send emails etc.

THEN, his nurse calls to book MRI for Willies' back and is talking about *possible* radiation, so will be delaying chemo, as they cannot do both at once.

It's not Willies' back that is the problem and it'll take a week or three to get the flipping MRI, then wait for the result.

I was ready to scream as we'd only just spoken with med onc and that is NOT what he stated!!!

When I told her that he was quite clear about ordering the chemo for early next week, she stated that she has an email for an MRI and radiation consult.

She wished me a great weekend, then said very clearly "it isn't going to happen". What the heck???

What would you do with this kind of nonsense going on around you??

I'm thinking of calling the grand poobahs of the hospital on Monday and maybe the media as well but that will take time away from getting Willie the treatment he so badly wants/needs.

We all realize that this may be his last hurrah but is he not entitled to it??

Thankyou for any answers, sorry the post is so long.

Mary, not a long post at all ..... it's good to have a full understanding of what you're facing.

It seems to me that either the med onc's nurse is a twit, and is causing the problem --- her attitude, which by the way, seems to be granted at nursing schools along with RNs (my wife, an RN would agree with this) suggests this might be possible.

On the other hand, the doctor seems to have been looking for a reason to put off the chemo by shuffling you to others -- perhaps in the hope they'd shut it down? --- but with the ball back in his court has decided, after talking to you, to do another sideways shuffle by sending Willie for an MRI.

I dismiss the nurse idea. She has attitude, no doubt about that, but I don't believe if she had the chemo order, and an MRI order, she'd short curcuit one for the other. Not impossible, but unlikely.

That leaves the doctor. It would seem he changed his mind after talking to you. Two observatons. He may be a great doctor, but changing his mind and not talking to you, I'd say he was, at minimum, a jerk -- a designation, unfortunately, which is too often handed out with MD degrees, The second observation is that he must be trying to avoid the chemo now and he's not being honest with you as to why. Perhaps it is all good intentioned. He may have had a conversation with the lung guy, and the infectious disease guy, and is convinced the risks far outweigh the possible good, and he doesn't, for some reason want to tell you. Or, it may be he's got Willie's file mixed up with another on his last day and some guy who thinks he's off for an MRI is about to get shot with chemo next week.

I take it that he's now gone for a month. I believe you deserve answers now. Where I live hospitals have omudsmen/women who are there to deal with situations just like this. I suggest you check on that. The head of the hospital is a possibility, but I worry that they might be more defensive than helpful --- especially if they sense trouble. You need someone on the "inside" who can tell you which strings to pull that will lift, not bring down, the curtain. I've not a lot of faith in hospital chaplins being able to help guide you, but there just might be a good one who would understand the system well enough to give you good advice on where and how to try to make sense of this.

Speaking of long posts, Mary, you got nothing on me!

I hope some of this helps and I hope some others will come up with better and brighter ideas than I have.

I look forward to your next post --- and tell Willie the big noise he hears is coming from me, in Canada, cheering him!

Sheldon AKA Sleepless

UPDATE

Mary here,

Hi everyone and thank you for the helpful replies. Much appreciated.

After a very stress filled weekend, we decided to just sit out Monday morning and then react as needed.

Around 10 am we got a call to see if we could have Willie at chemo by noon! Yes, yes, yes!!

They infused it quite slowly, as it has been a few months since the last one but Willie got his chemo!

He's tolerated it well, says he feels much better and is hoping to improve with the next batch too.

The intervening 'time off' has taken a toll, no doubt about that.

He's a fair bit weaker and looks more frail but is still working on various things and says he'll be stronger after another session of chemo.

He's slowed down his walks to less than a mile and not everyday this past week.

We also went for the MRI, as they are worried about spinal compression due to some new fractures that he apparently didn't notice. Get those results next week.

He does have a change in his gait, one foot just won't totally cooperate if he tries to walk fast and it flip/flops.

He was being quite stubborn about NOT having the MRI but it's been done, I cannot possibly look after him if he becomes bed ridden for any length of time, not with my dickie ticker.

Had some plumbing problems arise last weekend, what a delight! lol

Monday was Willies' chemo, Tuesday was my turn to learn how to fix plumbing problems.

The fellows at the local plumbing supply shop were great in explaining how to do some repairs myself, it's filthy work in case you don't know!

We don't have it perfect but it's not bad for a rookie. I have set and repaired toilets before but never piping. Quite proud!

Sleepless, I totally agree about the nurses' attitude, she's not my favorite person as she seems to be short on compassion and as someone who used to be in nursing, compassion is a huge part of being a good nurse as well as a decent human being.

Obviously, the doctor had sent two orders and for whatever reason, she enjoyed not letting on about the chemo.

I know that lung guy was quite okay with the chemo and I do think the infectious disease guy may have had the role of 'shutting down' the chemo but seeing as Willies lung issue is not contagious and he has no symptoms from it, it was a non-issue in my books.

Now, can the chemo make things worse? Perhaps.

Lung guy felt that Willie had aspirated vomit way back in January, before any chemo and that he had indeed probably gone through all the chemo with it. So then it should be patients choice IMO.

So, onwards and hopefully upwards.

Will let you all know how the next chemo goes in a couple of weeks.

Stay healthy and keep those PSAs as low as you can.

Happy Fourth of July!

Mary

Mary--its time to "go to war" :call the Administrator-On-Call of the hospital and tell him/her that there has been some "miss-communications" concerning his care and that you are "afraid of adverse patient outcome due to a preventable medical error and that you really need immediate clarification of the plan of care"

Make sure you have a narritive prepared with all the names and times and exactly where from your understanding the conflict exists

Mary,

Not sure where you live, but I am willing to bet if you have more plumbing problems or whatever, if you post on here, telling us what city you live in, we can find you some help.

Goodlife