Tok from South Africa - Dx around 2004

[MarietjievdMerwe]

Dear Debbie,

Unfortunately I don't know what kind of antibiotics, but only heard it was per IV.

I only hope and trust that the kind of drs he will see, will be able to do the proper tests (CT, MRI). Hopefully these are people who are able to read and give him the nescessary treatment.

He is in constant pain and is apparently on Trepiline as well as I am sure he is very depressed.

Keep well, my Friend.
Marietjie.

[Bonni Hess]

Dear Marietjie,
Thank you for your thoughtful update. Since you haven't posted for awhile I was so Hopeful that no news is good news and that Tok was doing well. I am so sorry for all that he is going through right now with the undiagnosed right shoulder pain and swelling, and am holding very tight to Hope that the cause of the pain and swelling proves to be unrelated to ASPS and can be easily and successfully remedied with antibiotic and anti-inflammatory treatment. It sounds like he is understandably discouraged and depressed, but Hopefully he will remain strong, willing to continue his courageous battle, and re-think his thoughts about amputation of his arm. I Hope that he was able to have the necessary scans to definitively determine the cause of his severe shoulder pain and swelling and that a treatment plan has been made based on the scan results. I will be anxiously awaiting your next update when your time and the situation allow, and in the meantime I am sending my most positive thoughts and very best wishes to Tok and all of your family.
With special hugs, caring thoughts, healing wishes for dear Tok, and continued Hope,
Bonni

[MarietjievdMerwe]

Hi Everybody,

Firstly: thank you dear Bonni for the good whishes. It is always very comforting to read your response.

Tok went to see an oncologist this morning. He left home at 1:30 am to see the dr at 8. Poor thing travelled by hospital bus which is a very scary thought!

He saw a Russian oncologist who apparently asked him to get a full report from dr Cohen and he has to go back to her on Monday! I was under the impression that he had everything with him: scans, MRI as well as a report from dr Cohen. This turns out not to be the case.

He will however go for a CT on Friday. This to me is proactive. Why on earth the dr would see him without a updated CT, I do not know, as this doesn't make any sense to me. And why they didn't ask for a CT weeks ago is also a mystery..

Just thought I would let you know the latest news on my poor brother. According to Carreen he is in very low spirits, which is understandably. This is heartbreaking to me.

Kind regards.
Marietjie.

[D.ap]

Marietjie

I agree with the going forward. I am glad to hear of that too
I am sorry it is feeling like slow motion. That kinda tugs at your stomach , huh?
How is Tok's arm looking and feeling otherwise ? You say his outlook is lackluster ?I am sorry to hear if that
Are you able to visit with the doctor ?
Just a thought
Here we need a release form to visit with doctor even though Josh is my son. However he is a young man
Another question is can the report/ scans be electronically sent?

All my love
Debbie

[MarietjievdMerwe]

Dear Debbie!

It does tug at your heart...

Unfortunately I cannot go with Tok as the dr is in a city 280km away from us. This just will not be possible. And I believe to try and speak to such a person will be impossible. This is very frustrating.

Also, Carreen would have phoned dr Cohen's rooms today for the report and yes, they will be able to fax or email it through to her. So that won't be a problem.

It's just so heartbreaking that he had to be on the road and at hospital for about 17 hours and still have all the uncertainty. None the wiser. All that for absolutely nothing.

He is, according to Carreen, in horrific pain.

HOPEFULLY we will be able to have some news on Friday. I will let the board know as soon as I have any news.

Keep well, my Friend.

[Amanda]

Hello Marietjie,
I am very concerned about the pain he is in an that the doctors are not controlling this pain!
Depression an pain are bad with cancer.. Is there any way to get him on meds? Is it nerve pain or regular horrid pain he is having?

Maybe someone can call an get meds sent or go pick them up for him asap

Huge hugs!

[Bonni Hess]

Dear Marietjie,
I share your heartbreak and frustration, and I am so very sorry for Tok's severe arm pain, increasing depression, and the extremely frustrating and inexcusably unproductive oncologist appointment after his extremely long hospital bus ride . Will Tok have to make/endure the long bus ride again to return for another appointment with the Russian oncologist, or is it possible for him to be able to consult with her by phone regarding the scan results. My most positive thoughts and very best wishes will be with Tok and your family on Friday for his CT scan and for results which show a benign and easily treatable cause for his severe arm pain. Tok is very fortunate to have your faithful love and support, and Hopefully that will help strengthen and encourage him as he continues his difficult battle with this very challenging disease. I continue to hold Tok, you, and your family very close in my heart and most caring thoughts, and I will be anxiously awaiting your next update when your time and the situation allow.
With caring hugs, shared concern and frustration, special thoughts, healing wishes for Tok, and continued Hope,
Bonni

[MarietjievdMerwe]

Dear Amanda and Bonni,

Amanda, he is having that horrid pain you are referring to. According to Carreen he is taking Tramadol, Betagesic and the oncologist prescribed Arthrexin suppositories which he refuses to use, of course! Men..so stubborn.

Bonni, unfortunately he has to see the oncologist again to discuss the result of the scan. Hopefully this could be done after the scan has been done. Also heard that he has to go for a MRI on the 9th of July! That's great news for which I am so grateful.

Thank you Bonni and Amanda for your continuing support. I know you both hurt as much as we do. This horribly monster that we all have to fight all over the world, but we will not let go.

Lots of hugs.
Marietjie.

[MarietjievdMerwe]

News just in is that poor Tok will have to travel again on Monday to see the oncologist!

It's so bad: travel to do the CT on Friday and again on Monday for the results.

xxx

[D.ap]

News just in is that poor Tok will have to travel again on Monday to see the oncologist!

It's so bad: travel to do the CT on Friday and again on Monday for the results.

xxx

So the doctor can't consult about the CT? Wow . I am sorry to hear that as that takes a toile on Tok I am sure.

Here is a laxative recipe we use when pain meds are involved.
http://recipes.sparkpeople.com/recipe-d ... pe=1894600
Hope he gets sees the light soon.

Love
Debbie

[Bonni Hess]

Hello again dear Marietjie,
I am so sorry that Tok will be required to take 2 long bus rides for his scan and then to discuss the scan results which will certainly take a great toll on him physically and emotionally. Unfortunately, many doctors and their staffs don't seem to consider the burdens that they impose on patients and family members, nor the unnecessary stress they create by making patients wait several days and sometimes weeks to receive scan results which can be available the same day! We always insist on meeting with Brittany's doctors the same day as her scans, or the next day in the case of her Clinical Trial scans in Canada, to preliminarily discuss and review her scan results with the understanding that they are only preliminary results until we receive the finalized radiologist report a couple of days later, but at least we then know if there is any significant new growth or new tumors and don't have to suffer through several days of scanxiety stress waiting for some indication of what the results are. I know that you are dealing with a different medical system, but it seems that Tok/ you have a right to at least request the scan results sooner given the huge travel burden that is placed on Tok in order to commute back and forth to the medical facility for the scans and again for the results appointment. If it is not possible for Tok to receive the preliminary scan results the same day as his scans, or to receive them by a phone call from the doctor, would it be possible for him to spend the weekend in a motel so that he doesn't have to travel back and forth to the medical facility on Friday and again on Monday?
Regarding his just scheduled MRI in July, what type of MRI is he having, and why couldn't this be done at the same time as his CT on Friday?
Take care dear Marietjie and please convey my very best wishes to Tok for his CT scan tomorrow.
With special caring thoughts, healing wishes for Tok, warm friendship, and continued Hope,
Bonni

[MarietjievdMerwe]

Goodmorning everybody,

So...Tok travelled all the way to find out that he didn't fill out the iodine allergy form which was available at the hospital,but nobody told he to do it, BUT because of that his CT got cancelled. I am totally lost for words. We have been warned by our GP that this practise is going on at our state hospitals: on Mondays and Fridays there will be no work done. This is to say the least: SHOCKING. Even when he had an appointment, they didn't even bother to accomodated him. I mean, he was there, he could have asked somebody to help him fill out the form as he are not very good at writing with the left hand. But the personel did not allow this. I am horrified by this. This is third world country behaviour and that makes us a third world country...

Now he has to travel back on July 1st (luckily its a Tuesday!) to do both the CT and MRI. Bonni I haven't got a clue what MRI they will be doing. It feels like a surprise... To try and speak to somebody about the MRI would be futile and an absolute waste of time. We will not even try to attempt this.

Just to give you an idea of our private drs: I was referred for an x-ray as well as a sonar for my very sore hip. Made an appointment at the radiologists for Friday 1 o'clock, got the sonar done and got the report about ten minutes later (sonar as well as x-ray), went back to the GP and was treated. Everything done in about two hours.

When Tok was still on medical aid he used to go for his CT and when we got back at dr Cohen's rooms about half an hour later, his results were already with dr Cohen! I hope i am able to scketch a true picture of the two opposites in our medical and hospital system.

So, the long and the short of my dear Brother's ongoing story is that he is still in a huge amount of pain and still none the wiser. Luckily the hospitals absolutely love to dish out painmeds, so he will be sorted till he sees the oncologist again. That said still leaves him in poor health mentally as well as physically. And this leaves me very very sad.

Keep well everybody.
I will keep in touch.
Kind regards.
Marietjie.

[MarietjievdMerwe]

And so many mistakes in my post. He "are"....goodness, that's a first! Hope I at least made somebody smile.

[D.ap]

We do need to laugh at ourselves, don't we Marietjie.
That kind of help is no help at ALL is it.
I am so sorry to here of it >
We have health boards to report to here in the states. The only problem is a person or persons NEED to report first before investigation begins.

My heart goes out to Tok and yourself.
Hugs
Debbie

[MarietjievdMerwe]

Dear Debbie,
At least i made you smile.

Unfortunately the state hospitals are run this way. If you get help, good, and if you don't, too bad. Patients are treated with very little respect.

Bottomline is he has to go back on the 1st of July and HOPEFULLY all the tests and scans will be done. Apparently every time he visits the dr in his hometown, they send him for bloodtests. Goodness knows why. And the results always came back the same: nothing wrong. What are they looking for?