Blog working

Good news! My original blog is working again. Please follow that one for updates.. www.simzblog.info

The virus...

In got great news yesterday that the medical aid will pay for the meds for this virus. The Dr wants me to be on it for 6 weeks which now makes it R55 000 for the pills. Which is covered! Yay! I just hope and pray the meds work as this virus is life threatening to me. If it activates it will attack my lungs and I will be put on a ventilator. Once this has happened there is not much they can do. So it really is very serious. The virus levels were apparently very high already, so I am on a big dose of medication.

I am going in for my 3 hour appointment tomorrow for my weekly SHS treatment (to help my immunity) and blood work.

Long overdue update

Hi friends

So as you all know my normal blog is giving some problems. I will use this old one until the other one works..

Quite a lot has happened in the last week or so. Blood counts are still up and down, so they not stable yet. My platelet count is good, but the red cells are slacking a bit.

Last week Saturday -- on the 1st of Jan 2011 I got admitted to hospital until the 6th for 'heamorrhagic cystitis'. At least I was not in isolation like with the transplant, but being in any ward is as bad. The infection is almost cleared up thank goodness as I have had it for about 10 days now.

What is 'heamorrhagic cystitis'?

It is an infection in the bladder creating the lining to dis-integrate and bleed into the bladder. It was caused by one of my Chemotherapies. Due to being immune surpressed I got the infection. It is unbelievably painful!

Then on the 7th of Jan -- as I got comfortable being out -- we got a call from the hospital... They found a virus in my blood that I need urgent treatment for as it can attack my lungs etc. We have not seen the Dr yet so I don't have info as to what exactly it is. Apparantly its a CMV virus. One problem.. The medication is for a month. 120 pills... which will be R38 000-00 for the whole 120 pills. Yes you read right, R38 000-00. We waiting on the medical aid for approval, but if they won't pay it, I have to go into hospital for a month to be treated via IV. How great? Not. They are forced to pay once I have been admitted.. We will find out by Tuesday. This new medication is going to suppress my immunity and blood counts even more.. which means my recovery is going to be delayed. Over all, it has not been a good start to the year!

New blog site

Hey peeps, I have moved the blog to a new site which is not limited to Google account users... please follow this link http://simzblog.info/ xxx

Hold thumbs and pray everybody!

So the request for my donor has officially been submitted this morning to our SA register and the international one. Lets hope we find someone quickly! Seeing the oncologist on Tuesday again for our plan of action.

Had another iron/vit B drip today, better than last time but my veins are fed up now. lol. Feeling a bit like a puppet and all my strings are being pulled at once. At least I am getting into contact with old friends again who keep me sane!

The search begins

So unfortunately we found out this afternoon my only sibling/brother is not a match to be my donor. Therefore the search begins! Lets hope and pray we find one quickly. Funny, my dad said a few days ago: "I never thought I would say this, but I really wish I had 6 kids!"

Otherwise things are going ok for now. I am busy doing a detox and a liver cleanse and I am also receiving oxygen therapy via IV. This is all to ensure I am in optimal health. Started the liver tonight and finish tomorrow lunch time. Feeling so grotty. Uh. The stuff you have to drink is really gross. But its for a good cause!

So, a lot of friends and family have asked whether they could be tested, which I am so grateful for! There is one slight problem though. Let me explain it this way. My brother had 1/4 chance, and everyone else has 1/50 000... incl the rest of my family. The testing is very expensive, and therefore they not keen on testing friends and family who only have 1/50 000 when it is cheaper and easier to find someone of the registry. Join the registry, and if you are my match you will come up on the system. If not, save another life! There are currently 60 000 donors in Sa, which approx 50 000 are white. (USA and UK have approx 1 million on theirs!) Thankfully we also have access to the rest of the worlds register. Lets pray we fill find someone local, or even better that a miracle happens and this all goes away by itself!

I urge everybody who reads this to have a look at the Sunflower Fund's website and REGISTER AS A DONOR! Most importantly, its FREE! Obviously if you can donate some moola which goes towards testing, it would be a bonus. You can save a life without having being a doctor or surgeon etc. How cool is it, that this is live donation, therefore you can really see what a great thing you have done by registering. I will be getting involved to create more awareness at schools, universities and wherever! Please take the time to read the process of donation, it is not as gruelling and painful as you think it is!

Here is the link http://www.sunflowerfund.org.za/Donor

Bone marrow donation is not like organ donation where you are on a waiting list. Wait, actually you are, waiting for the public to register! The more donors, the better chance everybody has. If you want any more information about this, please contact me :)

The beginning of a long road...

I have finally decided to open up about what my life has been like for the past 5-6 weeks.

I had some blood tests done recently as I was bruising easily and feeling very tired. I went to the doctor for something else and asked if the results were back, not thinking much of it. I got sent to A&E, they told me not to worry and I will have another blood test and go home. I got admitted due to low platelet and white cell counts and remained in hospital for 3 days. It was absolute torture as I had no idea why I should be there, I was feeling fine. On the 3rd day, the haematologist told me some upsetting news, that I might have aplastic anaemia or leukaemia. - Not having my family with me in London and having to absorb this information alone was so difficult. Although my stunning boyfriend was by side the whole way and still is. If it weren't for him, I would not be as positive as I am. Instead of tears, he created laughs and lots of smiles! Unfortunetly he was not able to come back with me, but will be coming back as soon as possible. - I was then transferred to St Bartholomew's for a bone marrow biopsy. I hurled my lungs out I was so nervous. It was a terrible experience for me and I hoped I would never have to go through that again.

After 2 weeks I saw the consultant. Leukaemia and aplastic anaemia was ruled out, thank goodness. And then the word MDS was mentioned. I had never heard of this and was a bit shocked to hear all the details. He told me this is highly likely, but part of the biopsy results were incomplete and that they can't confirm it yet. Wait, Incomplete..? What? dum dum dum... another dreaded biopsy lied ahead. I requested to be sedated this time as last time was a truly horrible experience. Sedation was the best thing I ever did! Did not feel or remember a thing, and after an hour and half I was fully alert.

On the 24th of March 2010 I got news that will change my life forever. I have been diagnosed with MDS Monosomy 7, stage 3 (out 4). Cancer at age 20. A Cancer that people over 65 get! And this cancer, turns into acute Leukemia. They have not given me much time before this happens, but I am positive I will fight this before that happens! I have been forced to cut my gap years short and I returned to SA on the 28th of March for treatment. I will be receiving chemotherapy prior to a bone marrow transplant. My brother has just been tested as a donor, but the results will take 2 weeks. I do hope and pray he is a match! My Professor said that he thinks I am the youngest in the country to have MDS. The youngest he has seen is 38. Therefore I believe my chances of success are higher as I am young and fit.

It has been a great struggle finding a specialist here as there are only 5 in the whole of SA. Only 3 hospitals do the transplant, one in Pretoria (where I am, but we are not comfortable with the set up) and two in Cape Town. Therefore I will be going to Cape Town. It's going to be tough, a month to 3 months in hospital in total isolation.

As my hair will fall out and I am going through a massive change, I decided to something I would never have done before! I cut my hair short yesterday and died it blonde, after it was almost hanging by my bum! This is the first time I have had short hair since I was a toddler. Quite emotional. Lets not talk about emotions. They have been flowing through my eyes almost everyday for the past week and a half.

So, I hope this blog will make you realise how precious life is and how much you have to be grateful for. Even though I feel like my life has come to an end, there will always be someone worse of than me! My goal is to be healthy for my 21st on the 28th of July. Hair or no hair, but no cancer!

A big thank you to all the fabulous support from family and friends! It is more valued than you think and keeps me some what sane :)