100th Re-Birthday

Hello Friends :)

Today is my 100 re-birthday – 100 days post bone marrow transplant which is a huge milestone to reach, bring on the cake!

It hasn’t been easy and I’m far from being my “normal” self but I have made huge progress and I am so excited to watch my body recover and improve. I wake up each day with a grateful heart and try to fill it with people and things I love, I hope that I never stop doing this and I challenge you to do it to!

It is an absolute joy to be able to be in control of my own life again rather than being governed by blood tests, doctors appointments, diets, rules and the little cloud floating above my head whispering “what if”. The simple act of drinking a glass of water poured straight from the tap (without stressing about bacteria count and possible repercussions) is a huge deal to me!

Gav and I are able to travel and explore (just locally for now) without worrying about how long it will take to get to a hospital in case I get sick and without packing my huge Big Jim toolbox full of medicines. I’m not kidding.

Last Friday we flew up to Pretoria to see my Haematologist, Dr Brittian, he was thrilled with my progress and latest test results and he ended the appointment with a hug and the thrilling words “go and live a normal life”. Queue champagne at the airport and an amazing supper with our whole family with lots of sushi and delicious “normal” food- the perfect recipe for the happiest Kirst!

Dear Cancer,

You crept into my life without warning and created a powerful storm inside me that seemed never ending. You are an unbelievable catalyst for change and you pushed me to realise all that I took for granted until I was broken. You taught me to accept the help of others, to spread kindness and love as much as humanly possibly, to rid myself of all traces of bitterness and sadness. You taught me that my body needs love, care and affection –not stress, worry and neglect. You ensured that I scattered and shared pieces of my soul to help and encourage others.

Cancer, you put me on a new road filled with potholes, and uneven surface and big stones. You showed me just how to navigate even if I suffered necessary injuries along the way. I have questioned how I live my life and have tweaked it to include the things of importance and to toss out the terrible and useless.

Cancer, your lessons have been beyond challenging. My body has been tormented while going through so much change, hurt and healing and you have been the masterful guide and powerful teacher throughout.  You have pushed me into walls and pulled me into storms only to throw me out into the calm and allow me to breathe again. You robbed me of so much and thrust me into your hell for 18 months. Every single day I wake up with the bitter taste of your memory in my mouth before the relief that you no longer own me floods my mind, leaving behind gratefulness and a yearning to get on with my life.

Cancer, you taught me that I am strong, resilient, courageous and bigger than you. You are a mere stone in my path and I have kicked you into the grass. You have been sidelined- no longer my master.

I seek importance in every moment, I cherish and honour my warrior body, I strive to do and achieve all things that make my soul sing. I am no long your learner, your slave – I am a SURVIVOR and an absolute THRIVER of life.

Cancer isn’t normally something to be thankful for, but in the end I don’t think I would’ve realised how incredible it is to wake up each day. Ultimately this disease has taught me more than it has robbed me of and I wont be the last young person to receive a cancer diagnosis – to those of you who find yourself facing this truth, I offer you this: be brave, be bigger than all that you face and above all, embrace the inspiration and transformation that comes your way.

I haven’t decided whether I will continue with this blog or not yet, I feel as though I want a big break from all things cancer related for a while, understandably. My special friends that have had to endure similar torture forced by this hideous disease have criticised me for leaving out many details of my journey and for “sugar coating” it. In many ways this has been on purpose, I never wanted this to be a horrible, gory account of suffering and torment; I simply wanted to create awareness and to keep my friends up to date. Maybe one way I will feel strong enough to share some of the omitted stories but for now I’m happy to shut the cover of this book and put it back on my life shelf.

Thank you to each and every one of you for taking the time to read my story and for all of your love and care, I wouldn’t be typing today if it wasn’t for you.

xxx

Life post transplant

I have to start this post by saying that I wish I had taken the time or been forced/encouraged to do a bit more research about how I would feel post transplant and the recovery process. The past two months have felt liked I dived into a deep, dark pool with nope hope of finding the shallow end, treading water for my life! I don’t think I really had any expectations of how I would feel post transplant but I do think I severely underestimated just how long it would take me to get back to “normal”. I feel like I’ve had to rewind my life and relearn the simplest of tasks again, not just physically but mentally too.

I assumed I would regain my strength and stamina quickly and easily but I couldn’t have been more wrong. I battle with extreme fatigue and constantly feel lethargic, in the beginning i found that simple daily tasks like having a shower left me breathless and exhausted. Usually when I wake up in the morning I’m very tired, but within an hour or so my energy levels generally increase and I try and get my day going, for the first 30 days I found myself spending the majority of my days in bed sleeping and generally could only manage being up and about for a maximum of 2 hours a day. I was going through quite a bit of coffee just to try and keep me awake for a few extra hours during the day but thank goodness I’m able to manage on my own now.

My first trip in my car was like a driving lesson gone wrong- my legs were so weak that I battled to use the clutch and I stalled more times than I could count! Making supper was an enormous challenge and even opening tins required at least 2 breaks while turning the tin opener around the circumference of the tin. One morning I couldn’t open my purity bottle no matter how hard I tried, I eventually threw it in the sink, had a little cry and waited for our Helper to get to work so that she could open it for me. I couldn’t swallow anything but soup or purity for the first month and I needed to have the purity to line my stomach before taking all of my meds. It’s quite something to feel angry with your body for letting you down, there’s no worse punishment than feeling helpless and wanting to do something so badly but not being able to no matter how hard you push yourself. I’ve learnt to be a bit more patient without myself and often tell myself that I can’t go from zero to hero overnight, it’s going to take time.

I see my Oncologist weekly so that I can be physically examined and I have a blood test before my appointment to check my blood counts for infections. So far my results have been amazing and I haven’t needed to take any additional antibiotics. I take SO many tablets everyday but more on this another time. I have been allowed to go to shopping centres and other public spaces because my blood cell counts have been good but I’m very careful not to touch handles or hand rails and I always have detol wipes in my bag to make sure I keep my hands clean, I also try and avoid crowds and public places during rush hour- germs are scary.

If you can remember back to my last post, I explained how I suffered really badly from an infection in my oesophagus as well as terrible mucositis in my throat, swallowing was nearly impossible due to the pain and this made me so anxious about meal times. I knew that I needed to get food in to help with my recovery and finally take in the nutrition that my body so badly needed but every attempt at swallowing was pure agony, purity and cup of soup became my staples and inbetween I tried to get in as much Ensure as possible. I still haven’t got much of an appetite but I think my tastebuds are also still recovering so food still doesn’t taste like much. I have battled with the diet a little bit just because the foods I do crave are not on the ”yes” list. Also you have to be so aware of what you’re eating and make sure that you have things packed for yourself if you go out. I am only allowed to drink sterile water (boiled in my kettle and cooled) or Oasis water- ALL other bottled or tap water is out. Here is a picture of my Neutrophenic diet I’ve had to follow:

I try to be patient with myself but it’s so frustrating, I see people running past me when I’m walking along and It makes me so sad, I feel like I’m never going to get there! I have managed the 5km parkrun (which we walked) on the Promenade here in Durban for the past two weekends and I loved it, I woke up stiff the next morning and it was SUCH a good feeling. I’ve also started doing some strength training with Gav’s intern, Jarrod, at Prime twice a week and it’ll be interesting to see my progress- hopefully goodbye trembling legs! Jarrod has been pushing me and I feel such immense pride when I manage to do a certain exercise better or for longer than the previous session- yay me! I wish I hadn’t taken my healthy, fit, strong body for granted before I was diagnosed and I wish I had pushed myself further in terms of fitness, no time like the present I guess! 

The Doctors warn you that you will begin to feel the enormity of what has happened to you as you get stronger post transplant and I think I have just entered this stage now. Some days I feel so sad about the time and experiences that I’ve lost out on but I try and quickly push those thoughts out of my mind and replace them with things I can’t wait to do and achieve. I feel so incredibly lucky to have been given a second chance at life- no words justify how incredible this miracle is!

Promenade walk

                                                                

So where to from here? Am I cured?

On Tuesday next week I will have another PET scan to check whether any residual disease is present or if I’m in remission- scary! There is no other way of knowing whether a transplant is successful or not. A very important benchmark in the recovery of transplant patients is the date 100 days after the patient’s transplant, for this we’ll fly up to Pretoria to meet with my Haematologist to discuss my scan results among other things. I will also then be allowed to go back to a normal diet if all is clear!

Always appreciate your body and all that it does for you- you are so incredibly blessed to be able to wake up each morning and to do whatever you wish without assistance or struggle. Push yourself to do something challenging!

xxx

Stem Cell Transplant - Part 1

Hello Friends!

I am so happy to be writing this post (although it’s taken me a number of days to complete it) because it feels like I have overcome the most momentous challenge and I am finally on the last tough road to recovery. The transplant process was so unbelievably physically and psychologically challenging both during hospitalisation and now while I am at home. I’ve decided to split this process into two parts – the first regarding the transplant and hospitalisation and secondly what my life is like post transplant.

On Monday the 3^rd of May, I was admitted to Netcare Pretoria East Hospital Stem Cell Unit and my transplant journey began, this was to be my home for the next three weeks. My room was similar to the room I had when I was admitted for my harvest and the same procedures in terms of isolation applied which I found so, so incredibly difficult this time. I was fortunate enough to have a view of a dam and golf course this time which at least let me remember that there was still life outside of the tiny four white walls.

My veins are very difficult to locate so to have an IV line in my hand or arm to allow various medicines and of course my stem cells to be administered was completely out of the question. You’ll remember when I had my harvest, I had a central line put into my neck and another one put into my groin, this time the Doctor decided to place the central line just below my collarbone. This procedure was PAINFUL in comparison to the other lines I’d had previously. Local anaesthetic is injected into the surrounding area and the line is then fed horizontally into a vein in your chest- the line is about 15cm long and I could feel it almost grinding against my collarbone, not comfortable! Although having the central line put in was very unpleasant it was actually far more comfortable than the previous two lines I’d had and allowed me to move around a lot more and lie on both sides when in bed. I also received plenty of medication later in the afternoon to prepare my body for chemotherapy that I would be receiving the following day.

One of the most challenging parts of the transplant process was the invasiveness and lack of sleep. The nurses have to check your vitals (blood pressure, temperature and oxygen saturation every two hours throughout the day and night, this is absolute torture when you are so exhausted and just want to sleep. 

Here is a basic outline of day in the life of a transplant patient whilst in hospital:

4am – Blood drawn from your central line to check count levels etc (+- 20 min procedure each day)

5am – Bed linen changed and room cleaned, vitals checked and drips changed

6am – Medications given and drips changed

7am – Vitals checked and certain drips changed

8am – Breakfast

9am – Vitals checked, visit from dietician

10am – Doctor doing ward round does physical check up and alters medications etc according to the                   patient’s needs

11am – Vitals checked and visit from transplant co-ordinator followed by physiotherapist

12am – Lunch and visitors allowed (completlely sterile and dressed in surgical gear). Oral medication                  given

1pm – Vitals checked and drips changed

2pm – Try and sneak in a nap with ear plugs firmly in place as the ward in INCREDIBLY noisy

3pm – Vitals checked

4pm – Try and be sociable with visitors!

5pm – Vitals checked, blood glucose check and supper served

6pm - Shower time (very difficult being hooked up to all of the machines and all of your drip lines)

7pm – Vitals checked and drips changed

8pm – Night time oral medication given

9pm – Vitals checked

10pm - Drips changed

11pm – Vitals checked

12pm – Hopefully sleeping!

1am – Vitals checked and drips changed

2am – Hopefully sleeping!

3am – Vitals checked

As you can tell there is are very few chances to sleep, if at all, and I think this is what really broke me during my stay. There is nothing worse than being so desperate to sleep and not being able to. Every time your vitals are checked, the lights are turned on and you are woken up, same goes for when the drips are changed. Mental torture! I think throughout my journey as a cancer patient I have remained very upbeat and positive and never really had days where I cried or broke down, my time in Pretoria recently completely broke me and I felt like an absolute wreck. I’m sure it mainly had to do with the lack or sleep and the enormity of the procedure I was undergoing but I sobbed and was angry and frustrated- the minutes seemed to creep by and the days seemed endless.

On Tuesday I began my intense chemotherapy regime, the treatment generally only lasted for about 3 hours a day and was administered through my line. The reason for giving a transplant patient chemotherapy before receiving their transplant is simple- it kills off all of the weak stem cells that are unable to fight against cancer cells effectively so that they can be replaced by the new, stronger stem cells that are refreshed and rejuvenated soldiers ready for battle! I had chemo everyday for 7 days and each 2 days I experienced different side effects according to the specific chemo I was receiving. This ranged from having to scrub my skin with soap in the shower to avoid extreme itching, to having twice daily ECGs. I was given plenty of side effect combating drugs through my line so I didn’t feel too bad during the course of various chemos. The chronic fatigue was starting to make it’s presence felt though unfortunately.

Tuesday the 12^th I was given the day off to rest as my transplant was scheduled for the following day. Transplant day is known as Day 0 and unfortunately friends, the process is not very exciting or gory! No surgery, no pain, no blood! You receive your stem cells intravenously and it generally takes about 20 minutes per bag. A Stem Cell Technician arrives in your room with a special water bath to assist with the defrosting of the stem cells until they reach a temperature of 36 degrees Celsius, the bag is then connected to your central line and infused. Your vitals are then monitored every ten minutes to check for safety in case there is any form of reaction to the stem cells. I had so many cells harvested that my transplant was done over two days, on the first day I received 3 bags of stem cells and on the second day I received 2 bags of cells.

Nurses helping with stem cells

Stem cells being defrosted in a special water bath

Receiving my stem cells

For the next 5 days I felt chronically fatigued and generally quite sick and weak, had no appetite and was still suffering from a very rare infection in my oesophagus, which made eating and drinking extremely difficult. I actually wasn’t even able to swallow my own saliva and I kept bringing up blood. It was absolute agony and felt like I had been stabbed in the chest with a knife. I was on the maximum doses of Pethidine and Morphine and I was still in pain. Many of my medications were changed to IV alternatives as I couldn’t swallow at all but some of them still needed to be taken orally. The nurses would crush them to a fine powder and then I had to put the powder under my tongue and just let it dissolve over time. The taste was horrendous obviously but the most frustrating part was not even being able to have a sip of water to wash it down when I was so desperately thirsty! From that day on I was put onto TPN feeding which is basically where you fed a liquid diet through your line. From the 23^th of May I gean to be able to swallow liquids and clear soup, this was a huge break through for me and I was beyond grateful!

Special visitors

I had a few red blood cell transfusions to help with anaemia and also to keep my counts up to aid the grafting and healing process, I also received platelets for the same reason. Eventually my white cell count (the little infection fighting superheroes) began to rise slowly which really lifted my spirits because it meant that my cells had grafted and that my transplant had been successful and I knew this meant I was getting closer and closer to being discharged. On Monday the 25^th of May I was discharged from the transplant unit and allowed to go to a Bed and Breakfast in the area.

On Friday the 29^th of May, I went for my first post transplant check up with my Haematologist, Dr Brittian, who checked my blood results from a test I’d had half an hour before and he was astounded by my counts! He was so excited to see that I had made so much progress in such a short time frame and much to our surprise he allowed us to return to KZN the follwing day! Most autologous (self donor) transplant patients need to remain close to the hospital for a minimum of two weeks for continuous check ups and blood tests just to monitor infection levels etc. Allergenic (a patient who has received donor stem cells) need to remain close to the hospital for a minimum of three months for the same reason, the reason the time frames are so drastically different is because the risk of infection and rejection for allergenic transplant patients is far greater than that of autologous transplant patients. Needless to say- I was beyond ecstatic!

Dr Brittian and the nursing staff gave me very strict instructions regarding precautions I needed to take to steer clear of infections and how to take care of myself. I will go into this in more detail in my next post!

Thank you sis so much for this 

Lots of love to you all

xxx

And so it begins...

Hi Friends,

Just a quick post tonight to fill you in on last week's events and results- quite a big week for me.

On Tuesday I had my blood tests done (phew) and on Wednesday I went in to have a CT scan to check how I had responded to all of the chemo I had before my bone marrow harvest as well as all of the radiation I had recently. I hadn't had a scan done since December so I was quite excited to see the results. My previous scan was an absolute nightmare as the nurses couldn't find a vein to put in a J-line so that they could administer the contrast dye (the dye highlights metabolically active sites which would expose cancer hotspots) and I ended up having to be sedated and an Anaesthetist had to put in my line.

When I went in on Wednesday the Nurses remembered me and they called a Doctor to help as I wasn't prepared to have hours of unsuccessful and painful poking and prodding, the Doctor eventually took me through to another ward to have an ultrasound done so that he could find a suitable vein and my line was put in near my elbow. The CT is really quick, I lay down on the flat bed part of the machine and waited for the contrast dye to be pushed through the line. I'd completely forgotten what it feels like when the dye hit your bloodstream- metal taste in your mouth, hot flush from the top of your head to the tips of your toes and the best part... the feeling like you've wet your pants!! Luckily these side effects only last for a minute or two! The machine gives instructions on when to hold your breath and when to breathe out. The line is then removed and off you go!

Gav and I flew up to Pretoria on Thursday to meet with the Team so that we would have an idea of what to expect when I have my transplant, we didn't get any surprises as we knew most of the info already. When my bone marrow was harvested we were told that it was a really good harvest but we were told any numbers and had no benchmark so we didn't think much of it, when I saw the Haematologist he said that the minimum amount of stem cells they need in order to do a transplant is roughly 2 million, my harvest blew this number out of the water and I have got 8.5 million little babies waiting to be transplanted! We were also given the results of my blood tests and CT scan... blood tests all clear and the best news we ever could've hoped for- a completely clear CT scan! What does this mean in simple terms? Well, I'm officially in remission! There is no evidence of disease present in my body at the moment which means that my cancer was definitely sensitive to the chemo and radiation. Unfortunately I still have to have my bone transplant as my remission is only temporary, there is a very high chance that without my cancer will return as my current immune system is strong enough to fight it off without any additional help. My new stem cells will hopefully be little super fighters and keep me strong and healthy for many years to come!


Tomorrow I will be admitted at Pretoria East Hospital before lunch and the process begins! Firstly, I'll have another central line put into my neck- it really isn't pleasant but I'm SO happy that I don't have to have any lines put in my arms- I then have chemo everyday for a week (day 0 to day 6). I think this will be the toughest chemo yet and the potential side effects are awful but I'll update you as I go along. I then have a day off to recover (day 7) and then on day 8 I'll have my transplant. Ill be in complete isolation again and on a special low bacteria diet both of which I'm really dreading, and at this point we think I'll be in hospital for about 3 weeks post transplant. Last time I thought I'd feel well enough to blog often but I felt so, so terrible and really battled to even watch TV so I'll just play it by ear this time.

I've had a weekend filled with treats and spoiling and my special friends and family have really been incredible :) Sushi, cocktails, pastry delights -  you name it I've probably had it! My amazing friend, Virgilia, ran her first half marathon on behalf of me on Friday and I am so honoured- you are a gem my friend, well done!

I'm spending my last night of freedom at the Dutton's beautiful home in Pretoria and will getting as much fresh air in my lungs as possible!

Have a good week Friends <3

 

 

 

 

xxx

Radiation: Tick!

Hi Friends!

I have just logged onto Blogspot and seen that I've had more than 15 000 page views! Wow- thank you so much to each of you that read my little blog- I feel so blessed.

Here's a little update on what's been going on on my side of the planet:

I finally finished my 4 weeks of radiation but am still feeling the effects of those powerful rays. I have a beautiful tan from my jawline down to just above my ribcage so most people would assume I've been relaxing on some white sandy beach somewhere with a daiquiri in hand! Sadly my white sandy beach was more like a hard plastic board and the sun was one huge laser pointing down at me. The tan is just about the only positive thing to come out of radiation, the rest has been horrendous! I really suffered with the heartburn and raw throat which made even drinking liquids uncomfortable, it has only subsided in the last week or so even though I finished radiation 10 days ago.

 

Goodbye and god riddance Parklands Radiation Department! Woo hoo!

Random creme soda picture? I was sitting in the waiting room about to go in for a session of radiation and I had my hand on my chest because I had such terrible heartburn and a little old lasy said I should try crème soda if I find myself without gaviscon or and eno. BEST ADVICE EVER. Thank you sweet little lady- I owe you.


I'm still really tired but I'm trying to make the most of my days!

 

I spent 3 days with my Mum, Dad, Sister and Brother in Law (and Niece) at Castleburn in the Berg last week

 



I saw Shane, my Oncologist, last week to catch up, show him wedding pictures and discuss my plan going forward. It really eases my mind knowing that I have such a huge support group here to fall back on, they have so much experience with patients and it helps to know that my anxiety and stress in completely normal. Shane is so relaxed and down to earth and the thing that I like about him most is that he genuinely cares about his patients, he never looks at the clock or his watch while you are in his office and he makes sure he leaves no questions unanswered before you leave. People often ask me why I have treatment in Pietermaritzburg when I have treatment in Durban, I always say it's because everyone feels like family at Hopelands, they are compassionate and so interested in each of their patients, you never, ever feel like a number. This makes the world of difference when you are going through something as traumatic as cancer. At the moment Shane says I'm mostly likely in remission although it's difficult to tell, I have to have a bone marrow transplant to stay in remission and hopefully eventually be cured otherwise the cancer will simply return.

Tomorrow I have to have a whole lot of blood tests- 21 tubes in total- this is to check that I'm in good health before being admitted to hospital for my bone marrow transplant. I also have a CT scan booked for Wednesday morning. Gav and I are flying up to Pretoria on Thursday for the day to meet with Dr Brittain, my Haematologist, and the rest of the team at Pretoria East Hospital that will be taking care of me during my transplant. At this point in time we don't really know too much about the transplant in terms of how long I'll be in isolation for or how long my chemotherapy will last for, feeling a bit anxious as I'm really dreading my time in "jail" but eyes on the prize!

xxx

Reminiscing

Its 05h30 and Gav has just left for work, I’m curled up on my comfy wicker chair outside with my tea and blanket keeping me company. I can see the harbour lights twinkling through the trees in the distance and the world is stretching and waking up.

This time last year I had just had my first chemo session of my first cycle and most of the time I was too sick to even get off the couch but I pushed through, I was stressed about work and wondering how I was going to keep up with life. I remember staying up most nights with wild thoughts racing through my mind – am I going to die? Am I going to ruin my body? Am I going to have a life? Will I get other cancers? How will I cope? I still don’t know the answers too many of these questions but I live in hope that all will be okay. I remember crying in the shower some nights so that no one would see how distraught I was and trying to stay strong when I felt like falling apart-  a smile and bright eyes can hide enormous pain and suffering, and sometimes it’s the only way to keep things together.

I often get asked how I can be so positive and cheerful through all of this chaos, in the beginning I didn’t really know how to answer the question without giving to much away- my family was going through another crisis at the same time I was diagnosed (I won’t go into detail as it’s not my story to tell) and quite simply, I didn’t have a choice whether I wanted to be cheerful or sad, I had to keep swimming. Of course I had a wonderful partner and friends who helped me immensely but it was incredibly challenging. I remember lying in bed staring at the ceiling one night when a though crept into my mind - would it be better if I just died so that I didn’t have to face the tough road ahead? I quickly pushed it out of my mind and decided there and then that I would never, ever think about death again. I was going to rise up to this challenge and push my way through all the hardships- no matter what they may be.

Since then i have hit some pretty amazing milestones and I’m proud of myself for making it this far. I think I sometimes forget the severity of my situation and it really sunk in the other night when I was lying in bed with Gav and we were discussing my will. Not exactly something that young newlyweds should be discussing! Sadly it’s our reality and we are forced to prepare for every outcome, no matter how upsetting it may be. My bone marrow transplant is my golden ticket - screw getting to visit a chocolate factory, that’s of no use when you’re dead! On a serious note, it really is my last chance to be in remission and to stay alive. We all just assume that it will be successful and I have little doubt that it won’t be, but we still have to prepare for the alternative…

I am officially 12 sessions of radiation down and here is a breakdown of how I’m feeling:

Body:  My skin is a bit sensitive but not unbearably sore, no bumps or redness to report! My throat and oesophagus are raw, raw, raw… I am living on Myprodol and anti-inflammatory throat spray to keep the pain away but swallowing is painful.  A piece of toast feels like the equivalent of swallowing a cactus, I’m NOT exaggerating!

When I left Pretoria, after my bone marrow harvest, the Haematologist said that I needed to gain a minimum of 5kgs before I went back to Pretoria at the end of this month otherwise she would not sign me off to receive my transplant. This sounds easy peasy right?! When last did you get told to put on weight, ha! Well let me tell you, it’s A LOT easier said than done, I have been tucking into pizza, pastry, chocolate, bread, cheese, Ensure, double cream yoghurt and ALL the treats, I’ve had Easter for the last 2 months but I just can’t seem to gain weight. I have had to force down the solids as it is so incredibly agonizing to swallow. I am also so exhausted all the time. I wish I would explain exactly what this fatigue is like but I just don’t seem to be able to find the words, all I can say is that it is draining and awful and I can’t wait to have energy and a bit of spirit again! My takkies are squealing and want to come out of retirement (the spiders can find a new home) and my heart can’t wait to get blood pumping speedily through it again.

Mind: I have good days and bad days and I guess that’s normal. I’ve got my positive pants on and I’m trying to find as many fun distractions to do as possible so that my hospital check-in date doesn’t consume my mind and existence. I’m nesting like a crazy person and my Husband isn’t complaining! Lots of gourmet meals are flowing out of our kitchen, I’ve planted a new herb garden, and I’ve been spending a lot of time in home stores finding bits and pieces for our special home, Pinterest is eating all of our data and our spare room looks like a craft shop exploded inside of it.

Grow little herbies! Hoping Gav wont kill these one's while I'm away!

I want to make 2015 my year of “yes”, I’ve already committed myself to being a wife to the most unbelievable man which I’d say is a pretty good start! I want to say yes to as many opportunities as possible and I have the best of friends who will join me on this ride. I really want to push myself, experience new things and go on adventures, I want to laugh, to play, to love and to make sure that I embrace every venture that comes my way.

So friends, I encourage you to SEIZE THE DAY! Life can be gone in an instant – smell those roses, breathe in the fresh air and say yes to those adventures.

xxx

Back to reality

Hi Friends! I can’t believe how time is flying, the past month feels like a whirlwind. Just to fill you in- I had an entire month of pure fun and cancer free– no, sadly I wasn’t miraculously healed for a while but I did get a real break from all things medically related and other than a few admin issues with Discovery, I was lucky enough be and feel normal again! It really made me wish I had appreciated my old life and routine more but it also made me so excited to be in remission. I’ve been cruising downhill but I’ve just started the last (hopefully) mountain climb of this little journey.

In the first week of March I became an Aunt, a Wife and turned 26 – truly the best week of my life! We had the most incredible Wedding day and I would do anything to be able to do it all again, I think the day is so chaotic and goes by so insanely quickly that you don’t get to soak it all in as much as you’d like to. We were so blessed to have our family and friends together celebrating our marriage and we love sitting on the couch in the evenings and chatting about the little moments that really stood out. I can’t wait to get our photographs and wedding video so that we can relive it a little bit! Our Niece didn't want to miss out on the party - Courtney Paige arrived 10 days early and my incredible Sister-in-law, Chermaine, brought her to the wedding just 4 days after having a c-section! We were so grateful <3

Husband and Wife <3

 

 

Our precious Niece, Kourtney Paige Muir

 

After our wedding, Gav whisked me off to Mauritius for the most special honeymoon- you really played out of your boots Babe! We stayed in the most amazing hotel and were treated like royalty. We are very active and not ones to lie and tan all day so we basically did all of the activities that we could, we snorkelled (and got chased by sea snakes), kayaked, parasailed, swam, did a cycle tour to Troux a Biches, went exploring and found some beautiful old ruins and stunning waterfalls, shopped in the markets in Grand Baie and Port Louis, tried almost every cocktail on the menu at our hotel, ate nutella pancakes every morning for breakfast and spent a lot of time in the Spa. We returned bronzed, rested and full of smiles- there is nothing better than travelling with your best friend!

 

 

 

 

Sadly when we got home I knew that reality was waiting for me and I started radiation last Thursday at Parklands Hospital in Durban… I will be having treatment daily for a month which works out to 20 treatments. Luckily it's only a 5 min drive from our house which makes things a bit easier. Radiation is a really fast process compared to having chemo! I’m so used to being hooked up to drips for hours and killing time. On the 2^nd of March is went to be measured and to have a scan which helps the Oncologists and the Lab to plan your treatment. I had a contrast dye injected into me which highlights metabolically active areas in the scan, I also had my radiation mask fitted. The mask starts out as a square, flat piece of plastic mesh which is put under hot water to make it soft, the plastic is then put on the face and neck and moulded, it is then put under cold water to set. Generally only patients receiving treatment to the head and neck area need a mask. Other patients have tiny black dots tattooed on their bodies to help the radiotherapist set them in the same position each time.

 

 

My mask



The mask clips down onto a bed once it is on you, the reason for this is that the same site needs to be treated every time to reduce the risk of damaging more tissue than needed. The mask is SUPER tight and uncomfortable- I have never been claustrophobic but I feel so panicky when my mask is on. Also, when the radiotherapist unclips the mask I am left with tiny dots all over my face because the mesh pushes down so hard against my skin. The procedure takes about 15 minutes and is completely painless - the mask is uncomfortable but not sore. You can’t feel anything on your skin while having treatment, not even a warm sensation. When the radiation beam is on, the machine makes funny buzzing and gurgling noises which can be a bit off putting.

 

 

Having treatment

 

There are horrible side effects that generally make an appearance towards the second week of treatment, I’ll try and update you once I feel something. So far I have just been very thirsty and tired. After radiation on Friday morning last week I couldn’t even get out of bed to get myself something to drink- my whole body was heavy and I felt so exhausted. The most annoying part about having radiation is not being able to wet the treated area - this means no showering! Thank goodness I have plenty of lovely perfumes, ha! I’m only teasing, luckily I’m able to bath but I can’t wash my chest or neck, I also can’t swim or allow the area to be exposed to sunlight as the skin becomes incredibly sensitive.

 

I saw this poster on the wall in the room where I have radiation - I think the warning sign list is quite useful and easy to remember

My unbelievable friend, Curtis Huysamen, was the guest speaker at a cancer relay held in PMB last week, his speech is so touching and I think it’s definitely worth a listen, please find the link below:

https://www.youtube.com/watch?v=zqAD8cGLauY&list=WL

I feel so emotional at the moment and I think it’s mostly because I know that I have to go back to “jail” in Pretoria in a month’s time to receive my bone marrow transplant. I am absolutely dreading the time in isolation and all of the painful procedures – I feel like I have just got back into a normal routine and I am having such fun with my Husband, Friends and Family. I just have to tell myself that it’s one final hurdle I have to get over so that I can start the rest of my life. I'm filling my time with lots of fun things to keep my mind busy and making the most of this free time!

 

 

 xxx

 

 

 

 

A little update and a helpful list

Hello Friends J

I thought I’d do a quick update about where I am and what’s going on at the moment and then share what I think is a very helpful list of tips for those of you who have friends or family who are battling cancer. I’ve seen a few examples of these lists floating around the internet but none of them have been spot on for me so I decided to make my own. I hope that it will be helpful to some of you and that you are able to understand things from the patient’s side!

Update

Since I returned from Pretoria I have been on leave from all this medical and painful- officially the longest period since last year March that I have not been poked or prodded on a daily basis, and it is GOOD! I now have to recover from my harvesting and avoid germs and bacteria as much as possible. This means constantly washing my hands, not touching my face, and avoiding sick people like the plague. I’m also not allowed to eat any meat, eggs or dairy at restaurants and when I cook, I have to make sure everything is clean and cooked to death. No rare steak or unwashed veggies in our kitchen! Other than that I am living a normal life- it truly is absolute bliss! I have pulled on my Bride pants and am planning up a storm, lists are running my life and I am having wedding nightmares at night… 12 days to go until I have my very own HUSBAND! I won’t be having any treatment until after our honeymoon so I am really enjoying this time off and trying my best to make the most of it. The chemo fatigue is still holding me back a bit but for most of the day I am managing to be active and get things done!

 

List of things a cancer patient wants you to know

1.       My family need friends

There is a saying that “when one family member gets cancer, the whole family gets cancer”. Please call my family members and check if they are ok, the emotional strain is huge and often a phonecall or message is needed just to get them through the day. Often grocery shopping or cooking is impossible for me because of the chemo side effects, but my family still need to eat. I have been so blessed with family and friends who have given us meals or invited Gav for supper when I haven’t been here, we are beyond grateful for this (you all know who you are- we are blessed to have you).  

 

2.       Please don’t ask me how I am

Rather tell me you are thinking of me or send a positive, encouraging message to me! Please don’t be angry if I don’t reply, I might be feeling absolutely terrible and unable to reply but I really do appreciate your thoughts and messages. Sometimes a message saying “I'm thinking of you, no need to reply” is the greatest message you can send. Let’s gossip and chat about things happening in your life rather than putting all the focus on my disease. I want compassion, not pity.

3.       I want you to be healthy

I would never wish this disease on anyone and would like you to reduce your risk as much as possible. Please quit smoking, excessive drinking, do some exercise and eat healthily- try and improve your chances of not getting this disease as much as possible!

 

Another very important part of this is financial wellness. Do you have adequate medical aid or a hospital plan to cover you if you get sick? Do you have dreaded disease cover or disability cover that will provide you with a salary even if you are unable to work? These are questions that most people don't consider important- especially if you are in your twenties and "healthy"!

 

I have always had a good hospital plan with Discovery and I have been incredibly lucky that they have an Oncology Benefit Programme which covers a huge portion of my medical expenses. There is no doubt about it- Cancer is expensive! I can't emphasise this enough. There are always shortfalls and money has to come from somewhere. In the past year, Discovery has paid over R400 000 towards my treatment, scans, tests and medicines. This is excluding the R380 000 for my stem cell harvest.

 

I have also been very fortunate to discover that I had a very good dreaded disease policy through my work , I have received a monthly salary even though I haven't been able to work- unfortunately savings don't last forever!

 

If there is one thing you do this year- please look into getting some sort of cover. It has eased a huge amount of stress and helped to cover so many unplanned expenses. I have the most incredible broker who has really helped me with all of my claims and things, I am so grateful for all of your help Mike! If you want to get some more in formation or a quote, Mike is brilliant and will help you from beginning to end. Contact him via email on mike@growingwealth.co.za

 

4.       I may not look the same but I’m still me

I may have thin hair, no hair, lots of hair, red skin, swollen feet, lose weight or put on weight, but I am still me. Please treat me the same and not like a patient - laughing won’t hurt me and neither will a hug, I need as much normality as possible. On the other hand I am always told that I look great, most of the time I feel absolutely terrible and I am covering it up with a smile and bright eyes.

 

5.       Pampering

Unfortunately, the chemo side effects make you feel truly unattractive and this is so emotionally draining, you feel like people are staring at your bruises, your scars, and your thin hair. Spoil your loved one with a pedicure or manicure, a massage or facial might be too painful as the skin is very sensitive while having chemo or radiation treatment.

 

6.       Spoil me

I have received the most thoughtful little gifts from friends and family when times have been tough and I can honestly say they have pulled me through some dark days. Some of these include: A new pair of pajamas, bubblebath, magazines, and flowers, a special blanket, silk pillowcases (to help with the hairloss process) and headbands.

 

 

Special spoilings from my precious Sister

 

 

7.       I’m trying to stay strong but sometimes I break down

Please let me cry and feel sorry for myself, I’m grieving in a way and trying to deal with the flood of emotions. Some days I will be angry, some days I’ll be happy, some days I’ll be sad. Please forgive me if I lash out at you or treat you badly, it’s not on purpose.

 

8.       Every cancer (and patient) is different

I know you are trying to help me when you offer advice about side effects, treatment or doctors but unless you have been through what I am going through, I would prefer not to hear the advice. This may seem exceptionally harsh but often the advice can be detrimental because you go into a situation expecting one thing and the complete opposite occurs. The best advice comes from your Doctor or Nurse.

 

9.       I don’t want to be labelled as a hero, I’m just doing what I have to do

Unfortunately the other choice is death and I won’t go down without fighting! The thought doesn’t even cross my mind. I will beat this, I will stand tall and take each day as it comes. I will get back up each time I am knocked down even if I need a hand to pull me up.

 

 

10.   Get involved in the cause

 

As someone who will be receiving a bone marrow transplant this April, I am deeply moved by my friends and family who have signed up to become bone marrow donors (a big shout out to Leigh and Brett – true heroes!) or taken the time to learn about my disease. Join the bone marrow registry, give blood, organise a fundraiser (Ashton and I will be climbing Kilimanjaro next year) or donate a sum (no matter how small) to cancer research or an organisation of your choice. It’s a gesture acknowledging that cancer affect communities of strangers as well as people you know.

 

Here is my choice - https://www.givengain.com/activist/113273/

 Curtis has beaten cancer twice and is such an inspiration to me, let's try and help him to reach his goal :)

 

Sadly I wont have time to blog for the next three weeks as our wedding has officially taken over my life but I will be back online when I get back from honeymoon :)

Be safe friends!

 

 

                                                                         xxx