Thank you

Friends I have to start this post with a massive THANK YOU! Thank you for all your incredible messages of love and support, jokes, life news and good wishes. I feel so blessed to have you all on my side, rooting for me to get well -  I promise I will do all I can to combat this challenge, I’m desperate to get back to normal and hopefully to bump into you while doing everyday activities!

 

 

My mum and I having a cuddle

 



Since my last blog post not much has changed, time is ticking on thank goodness and I am still dealing with the side effects from chemo. I have horrific mucositis (basically a raw mouth, gums and throat) and chemo fatigue, plus my haemoglobin levels are low again so I'm waiting to have another blood transfusion - otherwise I am coping well!

 

 

Playing Uno to pass time



I have been on a  very strict, special, low bacteria diet since I arrived- basically the food I'm given is all either tinned or stewed and most of the time unrecognisable (I wish I was kidding), nothing fresh or tasty. I can't wait to scoff my face with fresh fruit and salad! I'm dreaming of swimming in a huge bowl of cold greek yoghurt and fresh fruit...! I get weighed twice a day for the Doctors to check my fluid retention as well as my weight. Another thing I can't wait to do is change out of pjs and into normal clothes- not that into the slumber look.

The chemotherapy that I’ve been having causes bone marrow suppression, so the bone marrow doesn’t produce as many blood cells as it normally does, this is very important  as blood cells help fight infections and diseases. With increased demand, the body responds by producing more stem cells.

Mobilisation

At the moment my cell counts are very low (hence the mucositis and fatigue) and I am in a phase called mobilisation. Mobilisation is a process whereby stem cells are stimulated out of the bone marrow space (e.g. the hip bones and the chest bone) into the bloodstream, so they are available for collection for future reinfusion. This is done by means of drug called Neupogen which I get two injections of every morning at 6am in my tummy. They are not pleasant!

Every morning I have my bloods taken to check what levels the cell counts are at and to monitor for infections etc. My bone marrow should peak for collection on either Monday or Tuesday next week.

Bone marrow harvesting

*Very important note: If you sign up to be on the bone marrow donor list (by means of a quick and simple FREE blood test) and a patient is lucky enough to get you as their match, the process below explains exactly how donating your stem cells works. It’s barely painful and is quick and easy!

My greatest fear is that all of my terrible stories I have told you will put you off becoming a donor! Please remember that my blog is from a patient’s perspective, my type of transplant is an autologous one (I am my own donor) and that is the reason I have to go through the additional treatments etc.

The harvesting process takes 3–4 hours, depending on the amount of stem cells collected, this process may be repeated daily for 1–2 days to collect enough stem cells for a transplant later on in March.

Here is how the harvesting process works:

• A catheter (thin tube) is placed in a large vein in the donor’s arm.
• Blood travels through the catheter from the body to a special machine. The machine carries out a process called aphaeresis, which separates and collects stem cells from the blood.
• Once the stem cells are removed from the blood, it is returned to the donor (via another catheter in the other arm).

Occasionally donors may have side effects during the collection process. Some people experience chills and light-headedness. Donors may also have numbness around the lips and in the fingers and toes or cramping of the hands. These side effects are due to low blood calcium levels, which is caused by the blood-thinning agent used during harvesting and they go away quickly.

 

The very best news

My very precious fellow cancer soldier, Ashton, finished her final round of chemo today! She is such a hero and we are all so proud of her, finally free yippee!! I could write a whole post about this special girl- she has been so incredibly supportive and understanding throughout our "cancer battle" and I am BEYOND grateful that our paths crossed. We are currently planning to climb Kilimanjaro at the end of 2016 - watch this space :) I can't wait to get back and have tea with you, Bash!

So much love for you! Check out those guns ;)

I am REALLY praying and hoping that my cell count will peak on Monday so that I can then be harvested and sent home- please pray for me friends, getting desperate to get out of here.. it's been a loooong 12 days.

 

My special Mum is going back to KZN tonight and Gav is coming up tomorrow to spend the weekend with me. I hope you all have a fantastic weekend and take a few minutes to be grateful for all that you have been blessed with, sometimes life is so busy that you forget just how amazing it truly is!

 

xxx

Hello World!

Hello from rainy Pretoria, Friends! I had hoped to blog almost every day from up here but I have felt so terrible post-chemo that I haven’t done much other than lie on my bed.

I have already been here for 10 days today and to be honest I can’t say the time has flown. It has DRAGGED - hour by hour!

I checked into my isolation ward on Monday the 19^th of January, just after feasting on one final tea treat with my special mum:

 

Tea and carrot cake

 

The isolation ward is called Ward 20 and is on the faaaaaaaaar (add even more a’s in there) side of Netcare Pretoria East Hospital. As soon as you get to the reception you feel a sense of cold, clinical isolation- it’s not a welcoming place at all. It is a completely sterile environment because all of the patients inside the ward are at such a high risk of infection. We all have exceptionally low white blood cell counts which means we don’t have the ability to fight against any germs or infections that we could possibly pick up.

 

 

Basically as a patient you live in a little bubble, called your room. I am in room 27!

Outside my room is a tiny office area where the nurse sits while she is on duty.

 

Here are a few snaps of my palace:
 

 

Bedroom

 

Bathroom

 

The ultra inspiring view

 

A day in Ward 20

The day begins at 4 a.m. Yes, you read that correctly. Every morning at that horrible time, the night nurse comes in to draw several vials of blood. All the nurses wear full scrubs, gloves, masks and booties before entering patients ‘rooms. You are assigned a day nurse from 7am to 7pm and then a night nurse from 7pm to 7am. The Nurses change regularly because its shift work which isn’t the greatest because you don’t really get to connect with them. The blood tests are done for a very good reason. The complete blood count (CBC) numbers are a vital part of diagnosis and treatment. By drawing blood that early, our blood is first on the list for the lab to process. The results are back in time for the doctor in charge to read, analyze and make decisions when he or she visits later that morning.

At 5am, vitals are taken (blood pressure, temperature and pulse) to check that all is ok. Vitals are checked throughout the day, every 3 hours! At 6am the cleaners change your bed linen and clean your room. Bear in mind you never get more than a maximum of three hours of broken sleep at a time!

After breakfast at 8am, it is time to wait for the doctor and any other people that may pop in (dietician, physio, social worker or head nurse). They are also required to wear the protective kit and no physical contact is allowed. You are then left to do whatever you please, I thought I would be exceptionally bored in the room during the day so I brought lots of books and magazines to keep me busy but to be honest, today is the first day I have felt well enough to do anything more than just lie in bed.

At 2pm, your visitors are allowed in. Obviously if they have any sign of infection they aren’t allowed to visit and if the patient isn’t feeling well then the ward turns visitors away. I have been luckily enough to have had my Mum up here with me in Pretoria since day one so she comes in everyday to see me and can stay until 8pm. I honestly couldn’t have done this without her! Here are a few snaps of my special visitors:

 

Mum and Mands Dutton

 

Special Dad

 

 

Hello there, Fiance!

Chemo

I started chemo the day after I was admitted into hospital; it has been the strongest regiment in this little journey so far. It’s called IGIV and has been dreadful! As a mentioned in my previous blog posts, my veins are so scarred that it is virtually impossible to draw blood from them or administer a drip. The Nurses poked and prodded me SO many times last week and it was horrendous. After they eventually got a line up, it tissued which means that it fluids went into my tissue instead of my veins- I ended up with an arm that looked like Popeye’s!

Eventually on Friday, my Doctor decided to put a central line into my neck. This is a long, thin, flexible tube used to give medicines, fluids, nutrients, or blood products over a long period of time, usually several weeks or more. A catheter is often inserted in the neck through the skin into a large vein. The catheter is threaded through this vein until it reaches a large vein near the heart. It wasn’t too painful and I am so grateful because now my morning blood samples are drawn from the line instead.

 

 The central line

 

Today is the first day I feel semi normal again and not in pain, the chemo side effects are starting to slacken off and I have got my appetite back. I’m still so fatigued so I will spend the day in bed but hopefully I can start reading again. I had to have a blood transfusion yesterday because my haemoglobin levels were low and I can feel my cell count is a bit low today, hence the fatigue.

This has honestly been the toughest 10 days of my life- it has been so incredibly emotionally draining and I can’t wait to get out! I have so much to look forward to in the next few weeks, here is what kind of love and fun awaits me and is getting me through this tough time:

 

·         My kitchen tea

·         Valentine’s day (my favourite day of the year!)

·         Ingy and Craig’s wedding in CT

·         My Hens party

·         OUR WEDDING <3

·         My Birthday

·         Honeymoon!

·         The Arrival of our very first little Niece <3

 

All of the above happening in the space of the next 50 days, there's no reason not to smile! YIPPEE!

Every morning I read a page from my wedding countdown book that my special Bridesmaids made me- have a look at the page from yesterday <3 Had me in tears!

 

 

Aaaaand we are officially in the 30’s in terms of wedding countdown days- 39 to go! Have a lovely day friends!

xxx

 

 

 

 

A Fresh Start

On the 5^th of January I had another PET scan to determine how my body and specifically how the cancer cells had responded to the G-CSF chemo. Thank you to all of you who sent messages, called, said prayers and positive vibes- I am ECSTATIC to say the I received the results on Wednesday and the showed a virtually clear scan! I’m sure you are all wondering what this means for me.. Unfortunately in the Oncology world, “virtually” is not good enough as it means that there are still two cancer hot spots showing up in my body- one above my left collarbone and one in my chest. It is difficult for the doctors to tell whether these are active, multiplying sites or if they are simply scarred areas that are healing.

To be on the safe side I will need to continue with the next stage of my secondary treatment which consists of another round of chemo as well as a bone marrow transplant. Even though I'm not completely in remission I am still able to have the transplant, the closer you are to total remission the more successful the transplant is likely to be. It’s important that I tell you that even if my PET scan results were completely clear, I still would’ve had the additional chemo as well as the transplant. This is because the chemo had forced me into a form of “remission” that is sadly only temporary, if I had elected not to continue with the additional chemo and transplant my cancer would almost definitely have returned in the near future and it might to be too late then to do anything to keep me alive! I’ve come this far and endured so much- I can almost see the pattern of the checked flag at the top of the mountain!

 

 

Let me explain a bit more about my upcoming transplant: A bone marrow transplant is a procedure to replace damaged or destroyed bone marrow with healthy bone marrow stem cells. Bone marrow is the soft, fatty tissue inside your bones. Stem cells are immature cells in the bone marrow that give rise to all of your blood cells.

There are 3 different types of bone marrow transplants:

• Autologous bone marrow transplant: The term auto means self. Stem cells are removed from you before you receive high-dose chemotherapy or radiation treatment. The stem cells are stored in a freezer (cryopreservation). After high-dose chemotherapy or radiation treatments, your stems cells are put back in your body to make (regenerate) normal blood cells. This is called a rescue transplant.
• Allogeneic bone marrow transplant: The term allo means other. Stem cells are removed from another person, called a donor. Most times, the donor's genes must at least partly match your genes. Special blood tests are done to see if a donor is a good match for you. A brother or sister is most likely to be a good match. Sometimes parents, children, and other relatives are good matches. Donors who are not related to you may be found through national bone marrow registries.
• Umbilical cord blood transplant: This is a type of allogeneic transplant. Stem cells are removed from a newborn baby's umbilical cord right after birth. The stem cells are frozen and stored until they are needed for a transplant. Umbilical cord blood cells are very immature so there is less of a need for matching but blood counts take much longer to recover.

So many of you have asked how to be tested when you have heard that I needed a bone marrow transplant and I am SO unbelievably grateful for the kindness you have shown- it really is the most selfless act and ultimately the gift of life, which is priceless!

 

I am very fortunate that my bone marrow was not affected by my Hodgkin's Lymphoma (confirmed by that horrendous bone marrow biopsy that I told you about!). I will be receiving an Autologous bone marrow transplant which is a lot less risky, and obviously a lot easier to arrange as I am effectively my own donor. In the case of Allogenic bone marrow transplants, the statistics of finding a donor that is a 100% match is about 1 in 100 000 people!

In an ideal world, we should all be on the bone marrow donor registry so that each person needing a bone marrow transplant could at least have a chance of finding a match. The process is so simple and basically pain free <3 Please visit the following link if you would like to know a bit more about the process:

http://www.sunflowerfund.org.za/index.php/be-a-donor/become-a-donor

My bone marrow transplant happens in four stages:

·         I will be given a very high dose of chemo of the course of four days which will kill off any remaining cancer cells but It will also completely stop the bone marrow  from making blood cells, which we need to live.

·         I will be given a course of Neupogen injections and other medication to speed up the regrowth of my bone marrow after the chemo.

·         My bone marrow will be harvested from me

·         Lastly, my bone marrow transplant will be performed

On Thursday my Mum and I flew up to Pretoria to meet my transplant team and to have a few tests done to assess my current health. Thank you Mands Dutton for being so wonderful and for carting us all over the place- you are so special! I will be having my entire treatment at Netcare Pretoria East Hospital in a special transplant wing. For every procedure I will be in isolation and on a very special low bacteria diet. We had a very chaotic day and met one person after the next and had test after test- exhausting! I had an ECG (test that checks for problems with the electrical activity of your heart), a lung function test, a chest X-Ray and heart sonar.

 

 

This is where the magic happens!

 

 

 

Love this quote in the one waiting room, "Happiness is found in peace, love and joy. Live for today!"

 



 

Mum with our bag full of test results and manuals

 



 

Me during the lunch function test

 

I also had to have a lot of bloods tests done to check for various diseases and to check my cell counts. The Nurse at the laboratory panicked when she saw my blood form because every single little block was ticked on it and she’d never drawn so much blood in one sitting before. My veins weren’t in the mood to participate, each time the Nurse filled two vials my veins would run dry and she would have to try another vein, anyway we eventually got it done and I left with bruises galore. It’s so hot in Durban and it’s not often that I wear long sleeves or jerseys so my arms are often exposed, I find that whenever strangers catch sight of my bruised arms they stare! And I mean really stare! They probably think I'm some kind of druggy from Point Road. Also a cashier behind a till once asked me if someone had tried to steal my necklace (I only realised once I got to my car that she had obviously seen the scar on my neck/throat) ha!

 

 

Some of the elusive blood

My transplant team consists of a dietician, two nurses, five Haematologists, a social worker, a financial adviser and a medical aid representative. Everyone is really kind and I feel very comfortable! I got such a big fright after ready that silly manual that I blogged about last time, it really is so much to take in and digest without a medical professional guiding you through.

·         Tomorrow my Mum and I are heading up to Pretoria and I will be admitted to Hospital

·         The rest of the week I will have the high dose of chemo

·         The following week I will have the bone marrow stimulation drugs

·         Depending on my bone marrow levels, I will be harvested on either the 2^nd, 3^rd or 4^th of February

·         Return to Durban on about the 8^th of February

·         Last minute wedding planning to wrap up – yikes!

·         We get hitched! Woo hooo!!!

·         We go on honeymoon for 8 days of pure spoiling and relaxation!

·         The day after we get back from honeymoon I go back to Pretoria and I will start prepping for my bone marrow transplant.

I received the most beautiful gift from Che from IndieBerries (www.indieberries.com) who is all the way in freezing London! It was hand delivered this afternoon via Mom-Indie-Berries and Dad-Indie-Berries, thank you SO much Che for thinking of me- you truly are a gem! I can’t wait to get doodling in my doodle book J

 

 

 

Treasures!

 

 

 

My bridesmaids made me the most beautiful wedding countdown book that  am so in love with! This page was the one I turned on Thursday whilst in Pretoria- so fitting I'd say!

I will  have my tablet and laptop with me in isolation so I hope to update my blog every few days to keep you all in the loop! Right now I'm sitting in the sunroom with the fresh breeze blowing in and the jack russells at my feet, the last bit of freedom before the isolation ward.

 

 

 

I feel like I'm going to be living in this bubble like Sandy from SpongeBob Squarepants!

 

This is what I feel I look like! ;)

 

 Have a good week friends!

 

xxx

And My World Came Crashing Down

On the 29^th of September 2014, I finished my final round of ABVD chemo and to say I was ecstatic was an absolute understatement! I had all of my family with me at Hopelands for my last session, we all went for delicious tea and treats at my favourite little café, Rosehurst, afterwards and I arrived back in Durban to a beautifully decorated flat with bunting and flowers galore! I was spoilt rotten by Gav, my Sister and my special friend Hayls <3 It didn’t seem real that my nightmare had come to an end! Three days later I went for another PET scan but I wasn’t worried at all because all of my previous PET scans had shown such dramatic decreases of the cancer “hot spots” and Shane believed that after 12 rounds of ABVD chemo I would be in remission.

This is what the PET scan looks like. You can see my cancer "hot spot" clearly in the pictures on the left hand side - the dark shaded area.

Celebrations!

We booked a trip to Cape Town with Ryan and Chermaine (my brother and sister-to-be) to have some time to recuperate and celebrate such an incredible milestone, we ate and drank non-stop and did all things touristy just for the sake of it. I was able to exercise after the ABVD was out of my system so I bought new takkies and we walked along the promenade every morning to grab a coffee and watch the sunrise.. I had to have one blood test while we were in Cape Town just to keep an eye on my cell count, the nurse battled to find a vein and poked me NUMEROUS times before she could draw blood. When I walked out of the lab to the car, blood started gushing down my arms and I had to run inside to get strapped up and pressure put on all of my punctures! Besides that one episode, it was so incredible to have a week off from all things medical related. 

Towards the end of our trip I noticed a small lump about the same size as a marble just above my left collarbone, it wasn’t painful to touch but I was aware of it. My heart was so full and so happy but somehow I just knew that something wasn’t ok, I hadn’t heard from anyone at Hopelands regarding my latest PET scan, usually the turnaround time for results is only a few days. I decided to call Shane on our last morning and when I got through to him he said he wanted me to enjoy my time away and made an appointment for me to see him the day after we got back home.Shane booked me in for a biopsy the following week as he wanted to see what the lump was. He suspected that it was probably scar tissue left behind from the chemo but I was booked into theatre for the biopsy as a precaution. The operation was only 2 hours long and I was discharged the same day. A few days later I went back to Shane to get my results and my whole world came crashing down…

The PET scan still showed cancer activity in my chest area and my biopsy tested positive for Lymphoma tissue, this meant that I was not actually in remission and had actually relapsed. The tears were flowing and I sobbed. It truly was a horrendous day. Unfortunately because I had relapsed (this means that I didn’t ever go into remission after 12 rounds of chemo) and the only option left for me was to start a new cycle of chemo and plan for a bone marrow transplant – super scary!

I started a much more aggressive form of chemo  called G-CSF, at the end of October  which I battled with SO much. I spent most of November in bed with little to no energy. The side effects were horrendous and I often wondered how I’d make it to the next day. I know this sounds very dramatic but I have never, ever, felt so terrible in all my life. There was a point when I wasn’t able to walk to the fridge to get myself something to drink. I would get into a cold bath up to eight times a day to get my temperature down and my skin was so sensitive I could barely handle wearing clothing. The nausea, stomach cramps and migraines were so horrific. I absolutely sailed through ABVD chemo compared to the G-CSF, I constantly felt out of body and floated around, I battled to drive and had no control over my hands which meant continuously dropping things (sorry about your special vase Mum). The worst part about the G-CSF is that there is such a huge amount of cortisone in each drug, cortisone makes you look so well on the outside (think glossy eyes, clear skin and chubby cheeks and arms) when in actual fact you feel half dead on the inside, I often hear people say “you don’t look sick”. I have had so many trips to the shop that I don’t remember because I was “floating with the fairies”. I have had 3 cycles of this chemo and my last cycle ended on the 31^st of December 2014 so I had a very, very quiet New Year! 

On the 4^th of November we travelled to Pretoria to meet Dr Britain, my Doctor that would be looking after me in terms of the transplant. He went through the basics of what a transplant meant for me as well as the high success rate and what it entailed. I will do separate blog posts on the various stages of the transplant as it is fairly complicated.

Stage 1: Bone marrow harvesting (19^th January 2015)

Stage 2: Bone marrow transplant (end of March 2015)

I am flying up to Pretoria on the 15^th of January to meet the whole transplant team, have lots of tests and to have a tour of the transplant unit. I will keep you posted on the details- I’ve got an entire manual to read but I keep putting it off- there are scary things in there!

Some light reading!

In the meantime I am wedding planning like crazy! We are getting married in 60 days, SO exciting!

Our beautiful card that came from the amazing Che Dyer of Indieberries, she created our incredible Love Book for our wedding. Check out www.indieberries.com <3

Sneak peak of our invite

I also have another PET scan on Friday which is very important. Please send positive thoughts and prayers my way friends! I hope you have all had a fantastic start to 2015- I have a good feeling about this year J

xxx