The Dark Side of the Moon

[Toitjie]

Disclaimer: this might be on the heavy side, and longwinded (it's been a while since my last confession )

Reason for topic name - I couldnt think of anything more appropriate really. I love the moon, especially when the full moon rises over Canberra. When it just rises over the horizon after dark, it's huge and very red and I am mesmerised by it. But there is also a darker side of the moon... I have thought long and hard whether I should bare all on this forum or not. In a way, this forum has been my compass for so long, and the mostly anonimity affords me the privacy I need but still the comfort of friends. Selfishly, I wish to share my burden but also give some insight into our journey. Things happen in all of our lives and maybe it can bring comfort to someone else. Mostly I just want to share and not feel so alone.

Firstly, a step back...last year was tough. I never thought I would share this but now it seems so insignificat. My beautiful son, now 9, has been displaying a couple of tics and when he added verbal tics to his motor tics I knew but I didnt want to acknowledge it at first. But it got steadily worse and one night I started reading up and realised that he probably has Tourette's syndrome. He has every single marker. That night, around August last year, I cried for hours, and spoke to my best friend in South Africa during the night. Her son has Asperger Syndrome so she knows what it is to have a child on some or other spectrum. I was crushed. I felt bewildered, and guilty because I got annoyed with his tics and felt like it was the end of the world and I was the worst mother in history.

Then, true to my nature, I started doing research and soon enough I found a lot of evidence of using essential oils. There is a mix called Peaceful Child and I went and bought a whole heap of essential oils and started mixing my own potions. I gave my little boy an essential oil massage every night for months. To put myself at ease and in case I had to discuss this with his teacher, I took him to a paediatrician who said he is on the spectrum but didnt want to commit to where exactly. After a lengthy consult she suggested that the power of suggestion is very strong and said we can try to give him vitamins but tellling him this will make his tics less. I am opposed to any form of meds for this type of neurological disorder and was happy to try her suggestion. All I can say is that now, he does not have one single tic. Not one. The oils most definately played a role in alleviated the tics, helping him sleep better and with other issues such as anger it did wonders.

I think this experience has prepared me for what was to come..

After I got back from South Africa in April, my dearest hubby was out of sorts. He got tired at work and in May he had a bleed from his gums. After this we found out his platelet (the part of your blood that makes it clot) count was really low. Basically, he had bloodtests done for about 3 weeks where they tested for absolutely everything and cleared him of everything. But it didnt get better and I got extremely frustrated. If I was a doctor I would have done a lumbar puncture or bone marrow biopsy right away but it does not work like that here. In the end, they referred us to a haematologist at Canberra hospital and sent all his tests over (this was in June). He saw us on the Monday and immediately scheduled a bone marrow biopsy. He said we should come back the next week Monday for the results but that Thursday he phoned and asked us to come in.

I cannot describe the emotions at this stage. Mostly it's fear, but also a good dose of hope that it's all your imagination. But that Friday, when they called us in and in that office was not only the haematologist, but another doctor and the care coordinator, I knew this was bad. I was shivering and felt my tears stinging my eyes. I felt like I was wading through water, like in your dreams, everything seemed to slow down and every second is etched into my memory forever. The doctor didnt know how to say it and was trying to ease into it, so hubby said just give me the bad news doctor. And he told us my husband has leukemia., to be more specific, acute lymphoblastic leukemia. At that moment I thought the world dropped from under me. Strangely, he was calm, I completely fell apart. I felt to lost, and so sad, and so very very scared.

It took me the whole weekend to get over the shock. Fortunately the kids were scheduled to stay over at friends so I had time to recover because I didnt want them to know what was going on. Everything changes, every little detail of your life changes right then and there.

By this time he was pretty sick and couldnt really get out of bed and had no energy. That Sunday night he started having a fever and I decided to take him to the ER. I wasnt about to take chances with this. He got very good care in the ER although they didnt have a bed for him yet in the oncology ward. Monday night a room became available and he was moved.

The preparation for chemotherapy is crazy. So many lumbar punctures, more bone marrow biopsy's, 2 handfuls of tablets a day and no contact with the outside world in case he gets sick. His chemo started last week Wednesday, and so far its going good. He felt really tired yesterday but today was a good day. Today he has been in hospital for 2 weeks, he has to stay another 3 weeks until the first phase of his chemo has been completed.

After I cried myself to complete emptiness, I started doing research. I have read so much that my head feels like exploding. There is so much knowledge out there, especially the natural healing knowledge, plant and herb based. I have decided to use a holistic approach. I really dont care if people think Im a bit of a hippie (that is what people think because my ideas sound out there) but I have resolved that if I am not going to do everything in my power to keep my husband alive, I will never forgive myself. I know there are lots of factors to take into consideration and that it will not depend on me solely, but this is what goes through your mind when faced with a situation like this. Im a take charge type of person, and I want to be in control. This has made me feel so much not in control that I just wanted to take back some measure of control, and the only way I could do that was with what I could help with.

I remember when I went to Coles to get him a few toiletries for hospital, I nearly broke down in the shampoo aisle, when I saw a whole bunch of hair-loss shampoo. Small things like these tend to get to me more.

Apart from the chemo, I have started him on vegetable juice every day. I have read about a writer in the USA who cured herself of cancer by having the juice of around 2 kg carrots per day. I have read hundreds of articles on various vegetables and their amazing properties in terms of healing, cancer destruction ability etc. I give him a mix of carrots, beet, lemon, gingerroot and celery every day. Sugar is pure poison, I have believed this for years but now, faced with so many studies and cases, it really is something to think about. I am trying to limit his sugar intake but when he starts to feel very sick, the medical personnel disagrees with me, they feel he should have anything he wants. I dont agree but we will see how it goes.

I know this is going to be a long journey, but now, after knowing for 2 weeks, I am once again hopeful that we are going to beat this.

I am mostly so extremely grateful that we are in Australia when this happened. In terms of costs, we have been advised not to use our private medical when asked to make a choice but to choose public health care. It is simply not affordable. The care coordinator's exact words were "not even barrack obama will be able to afford chemo if he has to pay for it himself". I dont know what the exact cost is going to be but the one doctor said in the area of $240 000. So far it has not cost us anything. They told us that there will be minor expenses here and there but it will mostly be covered by medicare and the commonwealth (i say this because things like a bone marrow biopsy is not covered by medicare but the commonwealth pays for it, not medicare and not the patient). We are still less one income but we will not have a lot of medical expenses. I shudder thinking what would have happened in South Africa..this is where people's private funds say we will cover up to.... and then you have to sell your house. It is so unfair, and heartbreaking.

I think I should stop writing it's like a floodgate, since I started typing I cant seem to stop. It feels so good to just share my feelings. Im careful not to talk too much because it always reduces me to tears and I hate crying in front of people. This is safer, and Im getting it all out there. I have also found that people have strong opinions and have bluntly told me Im wrong for believing in things such as healing powers of certain vegetables or herbs or whatever. It has been hard dealing with other people's opinions when Im trying to navigate a minefield of information and trying to sift through everything in order to get to somehting that might actually work. I even found heaps and heaps of information on medical marijuana but that is a discussion all of its own.

I realised that people go through bad things, and they dont necessarily want to tell everyone, but when you are in a new country with no family and only a handful of friends, you have to reach out. We cannot do these things on our own, no matter how proud we are. We see people every day, not realising the things they are going through. We all just get on with our days. This experience has put so many things into perspective for me. My whole outlook on life has changed.

[Eyebrow]

OMG Toitjie. So sorry this has happened! I cant think about you must be going through!

So glad you are in Australia and the medical system here will treat you well.

The whole forum is behind you on this one.

If we can help in any way, just let us know...

[Sunnyskies]

Toitjie, I have so few words. I feel your pain and feel absolutely shattered for you. Cancer has touched me closely and I can only offer support. Do what you feel is best, don't worry what others think. Massive hugs.

[BriD]

My heart dropped for you and your family reading this Toitjie. What a difficult journey you are tackling right now. I too have had 3 of my immediate family with cancer...I know the road with chemo and all that comes with it. I will be thinking of you and praying for your husband to have a full recovery. He is very lucky to have you at his side. Have you looked into apricot kernels... At one point my hubby was looking into that with regards to cancer for other family members.

I am so glad that you shared your burden with us. .. Please know I am here for you. You have my number. .. will be here anytime.

So glad you in Aus for the medical side of it. Sending you huge huge hugs xx

[HadEnoughofJuju]

Every time I think about this I cry, for you and with you. There are no words we can offer that will comfort or make things better but know that we are all here for you. You know you can call anytime.

Stuff what other people think. You need to make the decisions that affect your lives and and do what's best for your family. Please let us know how it goes.

P.S. Thanks for sharing and baring such a personal journey with us. It really puts things in perspective.

[Mara]

Toitjie, hubby, you and the kids will be in my prayers.

I do hope and pray for a complete remission for hubby. You do what you have to do girl, you need to look forward and you need to be strong, for all of you..

I do think that there are a lot of charlatans on the internet, but I found a cure for my nosebleeds, so there is great advice as well!

[Nev]

Hi Toitjie

My wife finished a 6 month course of 3 types of Chemo last week and starts radiation therapy on Monday (every day for 6 weeks) so I understand what you are going through, I have also done a ton of research and come to the realization that the only method that works is the science method,

When you start to dig into these "miracle" cures, they fall apart, as an example there was recently the story of the woman who cured her cancer and wrote a book pushing the diet and lifestyle.....turns out she never had cancer, the specialists that some across as experts have no medical training and are generally selling something.

However..

Do whatever works for you as long as you don't mess with nutrition, or the science that is being used to try and cure him, also sometimes you just have to have a burger to keep going

We are a lot further down the path, so shout if you want to chat about it, happy to do so

​PS. i agree, sugar is poison

Edited July 13, 2015 by Nev

[AndreCarla]

Dear Toitjie

You are incredibly brave for sharing so candidly and honestly, thanks! You and your family are in my prayers. I pray for healing, strength, wisdom and comfort.

Hugs

Carla

[EmNew]

You and your family will be in our prayers........

[HansaPlease]

I'm really sorry Totjie.

I wish you and your family all the strength in the world to overcome this.

[JoleneW]

Hi Totjie,

I found your story truly heart wrenching.

We are sending you strength from our family to yours and praying for a complete recovery for your husband.

[FairGo]

Hi Toitjie

I am sorry that this has happened to your husband. Do what you feel is right.

Your family will be in my prayers.

Edited July 13, 2015 by MelJ

[neburr]

Hi Toitjie

I really feel for you and your family.

Please remain strong and do what you need to, for your family.

You will remain in our prayer and I am confident that you will find the strength to cope with this. Remain strong.

[rozellem]

Ai, Toitjie. Thinking of you and hubby. You are such a strong person, your family is very lucky to have you looking out for them. Do what ever you need to, to compliment the treatment he is receiving in hospital. It really is none of anybody else's business. X

[Toitjie]

Thank you guys, reading the above was good for the soul, I do appreciate it so much. I am a very big believer of science and his treatment is very rigorous and unfortunately also very toxic, which is the whole idea of course (I have to wear gloves if something happens because the chemo causes cancer, the doctor said, which is ironic)

But my idea is not to replace the chemo but to help his body in conjunction with the chemo. Im very sceptic too about all the nonsense you read but there is a wealth of information about nutrition and this is where my passion started. Im all about nutrition and after reading the amount that I did, I think (not know) that if we were to follow a vegan diet, with no animal products whatsoever, we would have a very slim chance of developing cancer. Just a hunch I have. Our bodies have the ability to heal itself and whole raw foods like juicing carrots and beets are amazing. Unfortunately, by the time cancer developed it's too late to only rely on whole foods, and this is where chemo comes in. But in saying that, your body can do with a little nutritional help fighting the cancer cells and I was truly amazed when reading about everything ito veg and herbs that is available and that helps with all sorts of problems. Also, giving up meat for me will be really hard. I dont have an inner vegan although I now wish I had

I think we are what we eat and cancer is a product of the refined sugary foods we take in. To this effect, I have gone a little haywire and almost freaks out (silently ) when my kids eat lollies. It's just a symptom of the situation and to be expected, but I try to see the lighter side of it and how I must look (horrified expression) every time I see a chocolate

anyway...he is doing so well. the doctor was with him this morning and said he really cannot believe that he is not flat lying down due to the side effects. He still has such a good appetite and gets up regularly. Im so proud of him, such a strong man.

Thank you for every well wish..it means a lot to me. I even got an offer for babysitting from a Perth forumite how awesome is that!

I know though, Im not alone, there are so many families going through similar experiences who struggles and dont quite know who to turn to. This forum really is the best.

[Chips]

Hi Toitjie

You are such a strong woman and your family is blessed to have you. Am keeping your husband in my prayers and glad that the doctor said his doing fine. Stay strong thinking of you

[Cole]

Toitjie, your family are in my prayers xx

[Shellfish]

Hi Toitjie,

I am so sorry to hear what you and your family are going through. I admire your strength and determination. It's a pity that it takes stories like these to put things in perspective.

Our beautiful 8 year old boy has high functioning autism. Not a day goes by that I don't worry about him and his future. I will say that along with the lows, come immense highs

[OubaasDik]

Umm, would you like me to pop around and talk to him for a bit?

You could take off for an hour or so with the kids?

Send me a PM if so

[Toitjie]

Thank you for the kind offer. OBD..he is in isolation at the moment. His neutrophills (part of your white blood cells) has dropped to zero which means he has absolutely no resistance to any kind of infection and visitors have been banned for at least 10 days. I will let you know when he may get visitors again

Im very frustrated with the medical profession's lack of dietary care. The team is awesome when it comes to the chemical side of the protocol but they dont have a nutritionist in the oncology ward and I think that would be an integral part of recovery. But anyhow...I will take on the role of nutritionist and ensure an alkaline diet wherever I can. Im sure after this I would be highly qualified to give dietary advice

The chemo is slowly starting to take it's toll...we were so happy when the doctor's said they are surprised that he is still in such good shape (no nausea and nothing else) but now it's starting to affect things like his mouth, very tired and a little unresponsive. The hardest part is for me to keep cool because I want to break down when he is in pain.

Funny to think about school (weird thoughts crowd your mind when you try to ban everything else) and remembering subjects like biology and science, supposedly to prepare you for life. but there isnt a subject that could prepare you for real life, raising children, dealing with traumatic events and coping under stress.

[Mara]

Toitjie... have strength... you are in our prayers daily!

Thank you so much for updating... just wish I lived closer!

[Nev]

Keep letting us know how it is going, there are lots of people here that care, and shout if there is anything i can do to help

[Peanuts]

Hi Toitjie

I think about you and your family every day. You are in my prayers! Good luck and please keep us posted.

[Toitjie]

Hi guys...it's been a rough couple if days but going so much better. Hubby got an infection and was really sick yesterday. Fever, BP is always near 90/50 and he had severe cramps.

But they put him on an antiobiotic drip and so far the fever is under control. The doc said if he gets pneumonia now there is nothing they can do. White blood count is 0.1and neutrophills 0. Now it can only go up

He had another bone marrow biopsy today and hopefulle we will get the results tomorrow. This is the test that everything is resting on. Did chemo round 1 work or not?

Other than that he looks so good today. Mouth sores gone, cramps gone, no nausea and he complains non stop about the hospital food and wait eagerly for Masterchef to begin on his hospital tv? i would say it was a good day

He still cant get any visitors due to the high risk of infection, but in saying that, im getting increadingly p*ssed off at nursing personnel that dont think! They have a patient with zero WBC and yet one sneezed twice next to him while taking his blood pressure and today of all days the nurse, before assisting with the biopsy, blew his nose loud and clear right next to him.

And then they make me wear a mask ?

[Mara]

Toitjie, that is really dreadful, I would complain if I was you. When I was in hospital some years back, I refused to have a male nurse change my dressings.. the nursing senior told me I did not have a choice.. so I told him to "try me". I called the hospital, told them my name and room number, asked them to please ensure that I have a female nurse, and they happily obliged!