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Tired of doctors and hospitals

jen2012
Posts: 1184
Joined: Aug 2012

Sitting in the waiting room waiting for my husband to have yet another biopsy. He's had 2 CTs, 2 MRIs, a bone biopsy, a bone scan, and a nuclear white blood cell scan...plus a week in the hospital and they still have not determined why he has so much pain. We are hoping that this soft tissue biopsy and aspiration today finds the issue...and that its an easy fix.

I get so sad being here, remembering having our little guy here 2 yrs ago and being so excited that we were blessed by such a sweet little guy. Ran into the doctor who did my ultrasounds...wishing we were here for a baby again..not cancer.

Overhearing a poor woman that just had a suspicious mammogram...who has had breast cancer...cancel her afternoon appts because she needs to see the surgeon. Hoping we get good news and so does she. Cancer sucks....

LindaK.
Posts: 295
Joined: Apr 2013

I hope you get some answers soon too.  It's hard to watch our spouses in pain and suffering.  There is far too much suffering in this world, especially with cancer.  Keep your happy memories close at hand, I used to replay every moment with my grandson as a happy baby to help me fall asleep when I was going through a tough time.  Kind of like counting sheep I guess.  It made me happy and let me relax.  Think of those happy moments with your baby and how much fun a toddler can be.

Linda

LivinginNH's picture
LivinginNH
Posts: 1259
Joined: Apr 2010

 

Wow, he really has been through a lot lately, and you're right, cancer sucks.  :(   And yes, let's pray for an easy fix, he needs a break from his pain.

Take care, will chat again soon.

Cyn

UncleBuddy
Posts: 511
Joined: Aug 2013

I'm sorry to hear that your family is going through such a hard time and I'm sad that your husband is so sick. I hope they figure out what is causing the pain asap. Let us know how it goes. I'll keep you guys in my prayers.

Lin

PS Yes, cancer sucks big time!!

janderson1964
Posts: 1501
Joined: Oct 2011

Wow Jen. I thought I had it bad with all the testing I have done in the past three months but that pales in comparison to what you and your hsuband have gone through recently. Unfortunately I don't think dealing with hospitals and testing ever gets easier. I was very sad at the hospital yesterday waiting for my MRI. It amazes me how hard it still is after all of these years. Yes cancer does suck. My wife rarely comments on how she is feeling before I have a scan. This time was different. A few days ago she said our lives will never be the same as before cancer. Yesterday she told me that scans are torture. It sucks for the spouse as much as it does for the survivor. I understand the meaning behind people calling this "the new normal" but there is nothing normal about it and it will never feel normal to me.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

loud and clear.im sorry he has been put thru the ringer lately and i hope they find something soon.i can only speak from a patients point of view and thats why i said in my last post i am just so very tired.and you know i dont mean sleepy tired.i am tired of being poked,prodded,ran thru machines and putting poison into my body.i know it is hard on our spouses too,all my husband can say is i wish i could just take it all away for you,my mother ,father and children say the same thing.oh what we put ourselves thru just to try and prolong our lives so we can be with our loved ones.let us know something when you can....Godbless....johnnybegood

jen2012
Posts: 1184
Joined: Aug 2012

Thanks all. Jeff and Jbg..you guys have been thru so much and for so long. When I say I'm tired of docs and hospitals I mean for all that have to deal with this crap. With the advances we've seen in technology, its discouraging the medical field still is using chemos that have been around forever. You would think we'd be further along.

Chelsea71
Posts: 1167
Joined: Sep 2012

I remember complaining about this to Steve asking him, "Do you not get sick of hospitals, scans, appointments?  It's all so depressing.". He explained that he didn't find it depressing and that he looked at it all as being things that could help him.  Boy, I tried but I was just never able to adopt his positive attitude.  His hospital is an hour away from our home and I recently had to drive by it for the first time since his death.  It made me feel physically ill.  Took me a couple days to get over it.  Brought back lots of terrible feelings. I don't miss the tests, doctors, hospitals etc....but I sure do miss Steve.

janderson1964
Posts: 1501
Joined: Oct 2011

I totally agree with you Jen. Technology is ridiculous with the way it is advancing and the things they can do. It shows you where the money and priorities are in modern society.

Lovekitties's picture
Lovekitties
Posts: 2878
Joined: Jan 2010

Being the medical caregiver for my sister, I totally understand.  She suffered greatly for months with pain in her leg.

It was misdiagnosed for some time as a muscular issue from a slight fall.  After many doctors appointments, tests and three trips to ER they found that it was bone mets pressing on a nerve.

Treatment was 10 rounds of rads and lots of different pain mads.  Getting the pain under control was complicated due to her reaction to most of them.  Additional pain was caused from a fracture in the pelvis.

I hope that they can soon discover the cause of your husband's pain and give him relief.

Hugs to you both.

Marie who loves kitties

jen2012
Posts: 1184
Joined: Aug 2012

I'm sorry your sister had to suffer so long with pain too.   Bone mets is what they thought, but they are questioning that based on the timing of this happening right after his dilation procedure - he had pain, fever and chills.  The bone biopsy was negative, which could be a false negative.   They are still worried about infection.    They did the biopsy of a soft tissue area near the femur.  My husband said that the interventional radiologist told him there was a lime sized lump there - my husband also saw meatballs rolling in the field when we picked up our son at school right after....so it's hard to say what he really heard and what was drug talk.   Can an abscess be the size of a lime??   I just want them to fix the problem already. 

annalexandria's picture
annalexandria
Posts: 2171
Joined: Oct 2011

It seems to me that test results for a person in this much pain should be dealt with immediately.  But I know from my own experience that this is not always the case.  I guess it's easy to not feel the urgency when you aren't the one in pain (or the persom caring for the one in pain).

And I'm right there with all of you on hating hospitals, tests, and all the rest.  I get an anxiety attack every time I go to any medical facility, even the GP.  I wonder if that ever goes away?

Hugs to you and your husband, dear Jen.

LivinginNH's picture
LivinginNH
Posts: 1259
Joined: Apr 2010

 

Hey Jen,

I know that it's a bit of a ride north, but have you considered going to Mass General for another opinion?  I'm just thinking that another set of eyes looking at his charts might make the difference in finding the right treatment.

All my best,

Cyn

annalexandria's picture
annalexandria
Posts: 2171
Joined: Oct 2011

they sent my samples to MA General's pathologist, who is, according to my surgeon, the "best in the world".  He was able to determine what it was.

So I'm assuming they must have a pretty good program overall!

Lovekitties's picture
Lovekitties
Posts: 2878
Joined: Jan 2010

According to the doc who finally got the diagnosis right in my sister's case a bone met can start pressing on the nerve and causing pain even before it is detectable on tests.  In fact her's wasn't found until it had caused the fracture.

Prayers for solution and easy fix soon.

Hugs,

Marie who loves kitties

jen2012
Posts: 1184
Joined: Aug 2012

Thanks Marie - I guess they are kind of hard to diagnose.   We should hear today or Monday about the latest biopsy.

 Cyn, at this point we don't want to switch gears, but we'll see what they have to say.  If they can't give us any answers, we may have to go elsewhere.

 

Thanks everyone.

tachilders's picture
tachilders
Posts: 315
Joined: Jun 2012

I feel your pain. I just got out of the hospital today. Went in for what I think was a partially obstricted bowel and after the CT scan found out I have blood clots in three veins in my right leg (vena cava, iliac, and femoral). Spent 3 days getting heparin and now will spend the rest of my life taking arixtra shots every day to thin my blood. Of course that really complicates the cancer treatment as well as having all kinds of potential side effects. This is my third hospital stay since July. Every time I go they find something worse than what I went in for originally. Oh well, that's the life of a cancer patient. 

jen2012
Posts: 1184
Joined: Aug 2012

Sorry Tedd!  That stinks.  My husband started taking lovenox last Feb when they found clots in his leg and lung.  He was still on folfox and avastin after he started the blood thinners so hopefully that won't be a problem for you.  It totally sucks though, I know.   He's been bed bound for two weeks and it makes me a little sick bringing up his handful of meds, shots, etc. every morning. 

janderson1964
Posts: 1501
Joined: Oct 2011

I feel you pain. I have had three clots. The second one put me in the hospital for a week. 2 angioplasties and 7 days of heparin. The lovinox shots are no fun either. They should eventully put you on coumadin so you don't have to continue on the shots.

jen2012
Posts: 1184
Joined: Aug 2012

Prelminary results say no cancer!   The oncologist called a little ago and said the pathologist said she does not see cancer, but sees what looks like myositis ossificans, which is usually seen after a trauma or injury - bone growth in the muscle.  Bizarre.  Hopefully we'll know final results on Monday and she kept reminding us that these are preliminary results and they could change....   So typical treatment would be anti-inflammatory meds, which he's allergic to.  She's thinking of trying celebrex in the in patient infusion room tomorrow with them watching him for a couple of hours. 

LivinginNH's picture
LivinginNH
Posts: 1259
Joined: Apr 2010

Bizzare is right!  I've never heard of such a thing.  Your poor hubby, and he's alergic to anti-inflammatory meds too??!!  :(

But the best news of the day is that she doesn't think it's cancer, so maybe you can both relax a bit tonight. :)   Let's just hope that the Celebrex will rid him of the pain and that he'll then get back to his ol'self.  :)

Hugs (())

Cyn

annalexandria's picture
annalexandria
Posts: 2171
Joined: Oct 2011

And Celebrex is said to perhaps have some anti-cancer properties, so that could end up being an unexpected bonus!

lp1964's picture
lp1964
Posts: 825
Joined: Jun 2013

...good outcome for you two.

Laz

 

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