Tok from South Africa - Dx around 2004

ASPS patients post updates here, including tales of success :)
MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004

Post by MarietjievdMerwe »

I meant ECG....EKG in Afrikaans... :)
Kathy
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Re: Tok from South Africa - Dx around 2004

Post by Kathy »

Thinking of you and Tok! Thank you so much for the updates!
Bonni Hess
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Location: Sammamish, WA USA

Re: Tok from South Africa - Dx around 2004

Post by Bonni Hess »

Dear Marietjie,
I am so grateful that things have moved forward for a resolution of Tok's continued arm pain with resection of the tumor that is causing it. I wish that amputation was not necessary to achieve that result, but am glad that Tok is accepting of it and at peace with the decision, and am especially grateful that amputation of his shoulder will not be necessary. My most postive thoughts and very best wishes are with Tok, you, and your family for a very successful outcome to the surgery and a speedy recovery with Tok receiving good post-op care during his stay in the hospital and his post-op pain well controlled. I will be anxiously awaiting your update when your time and the situation allow, and in the meantime I am holding Tok, you, and your family all very close in my heart and my most caring thoughts.
Heart to heart with deepest caring, healing wishes for Tok, much love, and continued Hope,
Bonni
D.ap
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Re: Tok from South Africa - Dx around 2004

Post by D.ap »

Marietjie and Tok

Great news as I know of your wishes
Hugs to you both
Will be thinking of you and looking for the update
Love
Debbie
Debbie
MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004

Post by MarietjievdMerwe »

Dear Kathy, Bonni and Debbie,

Thank you for your good wishes. This is always welcome and very much appreciated.

As expected, the operation was postponed till Tuesday. Tok will stay in hospital, which is much better as he will be monitored closely and his arm will be cleaned on a daily basis by the medical staff.

Because of the morphine he is using, he is sleeping most of the day anyway. He actually sounded relieved to be in hospital - if that is even possible. :(

Kind regards and special hugs to everybody.

Marietjie.
Bonni Hess
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Location: Sammamish, WA USA

Re: Tok from South Africa - Dx around 2004

Post by Bonni Hess »

Dear Marietjie,
I am so sorry for the delay in the surgery as I know that Tok and and all of you just want the surgery done and for Tok to be on the road to recovery I am grateful that they are at least keeping him in the hospital so that he can receive good monitoring, medical care, and pain control, and be well rested for the surgery.
Special hugs for Tok and you, caring thoughts, healing wishes, love, and continued Hope,
Bonni
MarietjievdMerwe
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Posts: 162
Joined: Fri Apr 13, 2012 7:59 am

Re: Tok from South Africa - Dx around 2004

Post by MarietjievdMerwe »

Dear Bonni,

Just a quick update: please believe me...still no operation as yet. :( I spoke to him just now and he is still in VERY good spirit. He even made jokes about staff asking him what he wants to do with the amputated arm (really ) :shock:

It seems as if he WILL be on Friday's theatre list. A specialist anethetist came to see him this morning and ordered a chest x-ray as well, which he already did. So hopefully that is also sorted.

Just as a matter of interest: three third year medical residents from Holland came to see him this morning. They wanted to see his WHOLE medical record and also was very interested in the ASPS forum. :)

Kind regards to everyone.
Marietjie.
Bonni Hess
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Posts: 1678
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Tok from South Africa - Dx around 2004

Post by Bonni Hess »

Thank you for the thoughtful update dear Marietjie. I am sorry that the surgery has been so delayed, but am grateful that Tok is handling it well in good spirits and with a sense of humor :-) I am sure that it is a relief to him that everything seems to at least be moving forward in a positive direction to rid his body of the arm tumor and Hopefully resolve all of his arm pain.
Thank you also for sharing the information about the three Holland medical residents' interest in Tok's case and our ASPS forum. ASPS certainly needs as many medical personnel as possible aware and knowledgeable about this extremely rare and little known disease.
My most positive thoughts and very best wishes continue to be with Tok and your family, and I will be holding you all very close in heart and thought on Friday and anxiously awaiting the results of the surgery.
With special hugs for Tok and you, deepest caring, healing wishes, love, and continued Hope,
Bonni
D.ap
Senior Member
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Joined: Fri Jan 18, 2013 11:19 am

Re: Tok from South Africa - Dx around 2004

Post by D.ap »

MarietjievdMerwe wrote:Dear Bonni,

Just a quick update: please believe me...still no operation as yet. :( I spoke to him just now and he is still in VERY good spirit. He even made jokes about staff asking him what he wants to do with the amputated arm (really ) :shock:

It seems as if he WILL be on Friday's theatre list. A specialist anethetist came to see him this morning and ordered a chest x-ray as well, which he already did. So hopefully that is also sorted.

Just as a matter of interest: three third year medical residents from Holland came to see him this morning. They wanted to see his WHOLE medical record and also was very interested in the ASPS forum. :)

Kind regards to everyone.
Marietjie.

Marietjie

It's great to hear of Tok's good nature.
I am sorry that things have come to a stand still and hope for everyone's sake that surgery is behind you all soon.
Thinking of you all
Love
Debbie
Debbie
MarietjievdMerwe
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Re: Tok from South Africa - Dx around 2004

Post by MarietjievdMerwe »

Hi Everybody,

Tok's surgery didn't go as planned and he was in serious trouble, having to undergo surgery for several hours. He is stable at the moment, but still on a ventilator and still in ICU where he is recovering.

We spoke to the hospital staff yesterday as well as this morning and he is awake and responding. Will stay in ICU till Monday.

This was a massive operation and although we couldn't confirm this, we are of the opinion that his arm was amputated in the shoulder. We were warned that this could be the case, which led me to believe that the cancer in his arm has spread to his shoulder. :(

When I phoned the hospital late last night, the surgeon took the time to speak to me, which I appreciated tremendously!

Love to all.
Marietjie.
D.ap
Senior Member
Posts: 4136
Joined: Fri Jan 18, 2013 11:19 am

Re: Tok from South Africa - Dx around 2004

Post by D.ap »

Marietjie
I am so sorry for the complications .
Our thoughts and prayers are with Tok and yourselves.
Hugs

Love
Debbie
Debbie
Jorge
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Location: Shenzhen, China

Re: Tok from South Africa - Dx around 2004

Post by Jorge »

Hi Marietjie,
I am also sorry for the complications. I wish your brother will be off ventilator very soon and move out of ICU.
MarietjievdMerwe
Member
Posts: 162
Joined: Fri Apr 13, 2012 7:59 am

Re: Tok from South Africa - Dx around 2004

Post by MarietjievdMerwe »

Goodmorning Everybody,

I spoke to Tok yesterday! He is off the ventilator and out of ICU. :) His voice is very hoarse, but that is understandably. He was still complaining about the pain in his hand. :( Of course this is ghostpains and I am sure this will past eventually.

He has to stay in hospital for at least the next 5 days and HOPEFULLY could be going home by the weekend.

His son visited him yesterday and from the photo he sent me, it looks like the arm was amputated in the shoulder. Very heavily bandaged, but still...
At this stage he is doing ok.

What the next step will be, i do not know. First we have to get him healed properly and take him home. Then we will, in consultation with the specialists, decide what is to be done in the future.

Kind regards.
Marietjie.
Kathy
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Posts: 130
Joined: Tue Feb 12, 2008 6:38 am

Re: Tok from South Africa - Dx around 2004

Post by Kathy »

We are thinking of you all. I really appreciate that you take the time to update everyone here. We have been so worried and thinking about Tok and all of you!! Please know we love you and are praying for comfort and healing for him.
Bonni Hess
Senior Member
Posts: 1678
Joined: Mon Aug 14, 2006 11:32 pm
Location: Sammamish, WA USA

Re: Tok from South Africa - Dx around 2004

Post by Bonni Hess »

Dear Marietjie,
Please forgive me being so late with my response to your thoughtful updates about Tok's surgery but we were out on our boat all weekend and I was unable to access my computer. I am so sorry for the complications that dear Tok experienced during his last Friday's surgery, but am grateful that he was able to be taken off of the ventilator and moved from ICU by Monday to continue his recovery. I am very sorry too that the amputation apparently was more extensive than you were Hoping it would be and extended into Tok's shoulder, but Hopefully the more extensive amputation enabled the surgeon to completely remove the tumor with good margins. I Hope that Tok is healing well and resting comfortably, that his post-op pain is being well controlled, and that he will be able to be discharged from the hospital by this weekend as planned so that he can continue his recovery in the peace, warmth, and comfort of his own Home which is always better than the noisy, cold, sterile hospital environment. When you are able to visit him, please give him a very gentle hug from me and share my special wishes for a speedy recovery with him. Take care dear Marietjie and keep the Board updated on Tok's recovery and the next step in his treatment plans as you are able.
With special caring thoughts, healing wishes for Tok, much love, and continued Hope,
Bonni
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