The Dark Side of the Moon

[Barbara1]

Just take one small step at a time. We are all here to hold you up and walk with you. You both continue to be in my thoughts and prayers. PS my offer still stands!!!

[Chips]

Am so sorry Toitjie about all the stuff you and your family are going through, just remember that they is light at the end of the tunnel. Please continue sharing.

[ottg]

Thank you for having the courage to share this incredible tough, sad and heartfelt events with us. This must be very hard, not only on your husband but on everyone in your family. Pray and hope that all goes well soon and that he will recover fully.

 

It is other people's life experiences like these that remind me daily how lucky and blessed my own life is for which I very thankful. Again thank you, well wishes and stay strong!

[Mel-B]

I am so sorry to hear this!! I can't imagine anything more stressful I really hope you find a way forward, and some good news happens real soon. I am extremely touched by your story, and feel incredibly sad for your situation. There is always hope. Keep your head up. 

 

[HadEnoughofJuju]

Hey Toitjie, I've been thinking about you guys and wondering how things are going. Keeping youin our thoughts. 

[Toitjie]

thank you, as always for the kind words. you are all correct of course, there is no other way but Im not liking it we have been at this for going on 10 months so I should be used to it by now

 

I guess my little meltdown was just a culmination of a lot of things. stress at work is heavy at the moment and when you then have to deal with personal stuff, which colleagues are not interested in, one tends to feel overloaded

 

but this is my safe haven...I can escape and vent a little, knowing there are people who care

[Mara]

@Toitjie all I can do is keep you all in my daily prayers, as I have done since your first post. I do hope and trust that this will soon be over and just a bad memory, that hubby will regain his strength and stay in permanent remission.

 

I can just imagine how frustrating it all must be for you and never having a day off... that will play with your head as well.

 

Please keep in mind, if you ever feel you have come to a crisis and need some time off.... I am happy to jump in my car, travel to Canberra and go and help you for a while... absolutely, all you have to do is call!

 

My prayer is, strength for you, wellness for hubby, understanding for the kids and happiness for you all!

[Caz]

Thinking of you.

 

Even if you feel your colleagues are not interested in your personal stuff, know that somewhere there is always a community like this one, willing to lend an ear and a hand where possible.

[Toitjie]

Mara, I was able to read your private message and stay dry eyed but when i read your offer above...tears. you are the second person on this forum, who has never met me and live far away, who has offered to come to canberra for me. For me? this stuns me every time. the kindness underlying your offer is amazing. thank you..I dont know what to say other than thank you If we get to this, where I cant function anymore without assistance, I promise I will tell you. Kindness is what will save this world.

[RYLC]

Toitjie your strength will carry you through and even when you think you can't anymore, you will...   I don't think I've ever posted before about the following:  My husband is in his 7th year of some strange illness that nobody can label.  Symptoms of a mixture between muscular dystrophy, Lymes disease, chronic fatigue, sleep problems, extreme muscle pain, tingling limbs, balance issues, headaches, complete brain fog, forgetfulness, plain old bedondered!  It is really tough to go from leaning on the rock of your family to now suddenly BEING the rock!  I know EXACTLY how you feel.  From what will I do if he dies, how will I raise these children on my own, to it's going to be okay, I can do this.  I just wish we had answers and a treatment plan *sigh*  So please know that you are not alone.  The support on here is so amazing.

[Sunnyskies]

Toitjie, courage and strength, courage and strength - you have more of both than you probably ever thought.

 

Both of my parents had cancer and I know what it feels like to ride the roller coaster of almost done, not done, stop, start, go, come back.  You are 100% correct when you say that there is a lack of communication, so many times I just wanted straight answers and for everyone to sing from the same hymn sheet.  Unfortunately, I think that oncologists are on a voyage of discovery with us as the disease can be so unpredictable. 

 

Do all you can to keep your husband fully hydrated and as well fed as possible, it can make a world of difference.  

 

So many hugs.  I can't come to Canberra, but you have been in my thoughts and prayers over the last months.  

 

 

[Mara]

@RYLC wow, and with dealing with all of that you give so much of your time assisting people on the forum, thank you, thank you, thank you. Life can sometimes throw us a curve ball where we wonder if we will ever get through it.

 

I do hope that the doctors can reach a diagnosis, soon for your hubby. I am sure it must be hard it must have been to become the decision maker and rock in the family... not easy to have the rug pulled from under you.

 

I know how that feels, have been battling with a pain on the right side of my face for around 4,5 years. six months ago they eventually diagnosed it as Trigeminal Neuralgia... not something I would wish on anyone. However, now I take yet another tablet for that, but it has done the trick and mostly I am pain free now.

 

We just have to trust and be thankful, which I am, and I thank the Lord everyday for his blessings, kindness and healing powers that he bestows on us all.

[elleneo]

23 hours ago, Toitjie said:

damaged.

Just finished reading this thread, so sorry for your struggles Toitjie, you do sound like your are strong and coping and you and your family are in my prayers.

 

what happened with the marrow matches? Did the siblings help in the end?

[zamunda]

I am so sorry to hear this. Be strong and you will get through it. We have been here little over two years and it has been tough with all sorts of family health issues to deal with. It is at times like these, despite the tears and heart aches, we find out just how strong willed we can be.

 

You will be in our prayers.

[SML]

I'm so sorry to hear about the last 10 months. Really awful. 

Take care and keep us posted. 

[Toitjie]

20 hours ago, elleneo said:

Just finished reading this thread, so sorry for your struggles Toitjie, you do sound like your are strong and coping and you and your family are in my prayers.

 

what happened with the marrow matches? Did the siblings help in the end?

hi Elleneo...the donor is still there (the match in Germany). They have recently told us that they keep this on his file, and only when he has a relapse in the following years will they do the transplant as chemo wont be an option to go through again. Wrt his brothers...I dont know..they say they have emailed the nurse care coordinator and the nurse care coordinator says she has emailed them. All 3 of them deny that they have received emails from the other. So I dont know how difficult it can be to send an email

 

I dont really care though...I want as little as possible to do with the nurse care coordinator. she is awful. She's the one who told us, the day we heard the news, that there arent any beds available and that someone has to die before a bed will be available. So they will phone us... I understand they work with devastated families on an hourly basis but she has lost her compassion and really do not care about the words coming out of her mouth.

 

At least he has a back-up plan if he needs it.

[elleneo]

Oh my, well at least you have the match in Germany if needed as you say..

 

its ts true what they say ..hospitals are only as good as the nurses...

[Toitjie]

I'm sorry if I came over a bit negative about nurses. this is only one nurse that is awful. I will say this, the Canberra hospital has some pretty amazing staff. The doctors might improve their communication strategies but for the most part they are really good. The nursing staff were the ones who carried us. If you ignore the single ones here and there who are tired and grumpy (which I can't blame them for), there are those shining lights, that after a double shift and missing her 10 year old's birthday, still stay 10 minutes after her shift ended to chat with us and give comfort.

[Mel-B]

Hi Toitjie, you have been in my thoughts ever since I read your post. *virtual hugs* xxx Keep us updated, we are rooting for you and your husband!!! Keep up the nutrition, even though I know sick people get fed up with it, I too believe food can heal, or play an important role in recovery and immune system boosting. Have you read about the benefits of flaxseed oil mixed with cottage cheese? I came across it after doing research for my son who suffers from extreme skin conditions and constant other infections. PM me.

[Toitjie]

It is with a heavy heart that I give my final update on my hubby. After a huge battle he passed away last week Tuesday, 2:49am at the Canberra Hospital.

 

We have been through hell and back with so many mistakes made by doctors. In the end it was not the leukemia that killed him, but an infection due to a particular toxic chemo drug. It completely destroyed his liver within days after starting to use it. The doctor was never concerned and in the end his organs all gave in as the infection took over.

 

I was with him during the 24 hours prior and was with him when he died. I think this must be the most horrific thing I have ever experienced and will forever be changed. I am so angry, this was preventable. We have only been here for just over 2 years and now we are alone. the community in Canberra has been absolutely amazing. I am deeply humbled by the extent which help has been offered to us. As his funeral policy will not pay for his funeral due to a 12month exclusion, I have received a massive amount of funds, given anonymously by the generosity of my chosen family from the south african community here.

 

I simply do not know where to start saying thank you as the support has been overwhelming. It sill leaves me shattered and my two kiddo's without a father but this is our home and this is where we will stay.

 

In loving memory of this dear man whom I adored, Reynier..will love you to the end of time. Yolandi.

[Barbara1]

I am so so sorry Yolandi. I am so heartbroken right now, I cant read your whole post. All I can offer you right now is my love and prayers. xxx 

[FairGo]

I am so sorry to hear about your loss.  My deepest sympathies go out to you and your family. May God give you peace.  You can take comfort in how you cared for him for so long and lovingly. No one could have done better.

{Hugs}

 

Edited April 18, 2016 by FairGo

[Mel-B]

NO!!

 

I am so sorry.

 

This is the saddest thing I've heard in a long time. May God give you strength during this time.

 

 

[Aneldari]

♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡♡

 

[RedPanda]

Words fail. I send you a hug instead.