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Lee’s Stem Cell Transplant Journey 2023, Perth (2025)

15/03/2025

20 MONTHS POST TRANSPLANT

An update on how things are going almost two years since my stem cell transplant.

This year I started back at work teaching two days a week. Some days driving to work, I still have to pinch myself that I have actually made it this far and I am a working woman again. It was scary to walk back into school after 3.5 years, but amazing at the same time, and I felt so welcomed by the staff. Five weeks into the term and it feels like I never left 😂

As well as teaching, I also work two part-time jobs and have the Airbnb, so life has become busy and I am still playing catch up. My body is having trouble with the extra movement that comes from general work, but it’s coping and I am proud that I'm becoming stronger, physically and mentally. Stretching helps so much and soon i will get back into either yoga or pilaties. Also the last couple of weeks Ive been catching up with friends more because I feel more energetic, and today I went for my first hike with Indi and felt alive.

I am officially off all medication connected to my transplant. Tests are still being done on what’s causing my body pain, a few major things like rheumatoid arthritis have been ruled out which is a relief. It’s even possible that it is GVHD. Ive been given anti inflammation medicine to help but my goal is to be medication free.

I still have GVHD in my mouth and as a result my mouth produces no saliva at all. This has led to some complications like ulcers and my front teeth (top and bottom) have holes in them. A dentist visit on Monday that I am not looking forward to. Having no saliva I have had to adjust my diet because a lot of the food I previously loved (like apples and oranges) I can no longer eat.

I have appointments with the haematology team and very 2-3 months and now every second visit is face to face. As you can see my head is still sporting the chemo curls and I’ve become quite attached to them and kind of want them to stick around.

Thanks so much for your support over the last few years. I hope that these posts continue to give information and helps someone.
Lee 💖

15/05/2024

9.5 MONTHS POST TRANSPLANT
It’s been a while since I have last posted. I have to be honest it’s been a rollercoaster journey and patience has been so important in my healing. Regardless of how slow recovery feels I can tell you that you are always moving forward. Just keep trusting in your medical team. I am now feeling better and beginning to tick off some life and medical goals/milestones that I have had plenty of time to think about and reassess … it’s incredible!

HEALTH: I had my second lot of baby vaccinations 5 in each shoulder. This time I had some side effects from them, temperatures and very sore arms for about 9 days. My next lot of vaccinations will be at the 12 months mark.

Four days ago I was put back onto steroids for GVHD of the mouth and skin. Tomorrow I have to pick up a special steroid mouthwash which will hopefully help as I have no saliva at all which makes eating very uncomfortable because of this I generally eat one meal a day. I am very lucky it is a mild case. It is preferred that you get mild GVHD because it helps to keep the leukaemia away. I am still leukaemia free which feels amazing!

WORK: I’m a working girl again. It’s been 2.5 years since I have worked and I have nabbed myself an awesome casual job at a Sip and Paint in Freo teaching adults how to paint step by step while they enjoy a drink, the tunes and some nibbles. One of my reassessments was to immerse myself in living a life of doing art and being true to the talent I have. I am loving the creativity so much. I have also begun painting my first mural. A mural is something I have wanted to do for years but not had the courage or self belief to do it. I hope it’s the beginning of more mural opportunities and will open doors…

LIFE: I am managing to walk three days a week down the beach pretty regularly now and will increase soon to four days. Today I had my first hair cut which was another milestone. I’m cooking again, cleaning the house, seeing friends more (who are just fabulous humans)

Life is great☺️

07/02/2024

SIX MONTH VACCINATIONS

Today I had my first lot of vaccines, 9 of them (4 in the left shoulder, 4 in the right and 1 in my tummy). It was over in about 10 minutes and out of the 9 only 3 of them hurt more than usual. After I had to wait 15 minutes then allowed to leave.

I found out today that there are more vaccinations to endure. The next lot are in two months time when I’m 8 months post transplant, then 12 months and finally 24 months.

The pictures below are of the needles, my shoulders, the vaccines and my vaccination card.

I also had my haematology appointment this morning and I am now going from fortnightly visits to monthly visits… very happy about this. Despite the symptoms I’m still having my body is doing really well & my haemoglobin is finally catching up at 119 (pretty much within normal range now). Kidneys are still high but doing better with the drop in cyclosporine intake.

You also need to look after yourself mentally, being a live but not actually being able to live yet can take its toll on you.

Lee ✌🏽

28/12/2023

FIVE MONTHS POST TRANSPLANT.

Touching base with you to let you know how things are going with me at this stage post transplant.

I’ve been quite sick as I’m decreasing the steroids, loss of appetite and nausea. Down to 5mg tablet per day. Diarrhoea is daily and throughout the day, but exhaustion still pretty much a daily battle. Mucusitis comes and goes and loss of taste is a new symptom I am experiencing. To my knowledge I’ve not had GVHD (Graft Verses Host Disease) & I am so thankful.

As of a month ago my haematology appointments went from weekly to fortnightly which is progress. My medications over the months have either been increased or decreased depending on how my body is coping. My liver has always struggled, it doesn’t like one of the medications called Cyclosporine so that has been reduced again.

As you can see from the photos that my hair is growing back quite differently. It has very tight curls and is alot greyer in colour. Not too sure how I feel about this, not a lot I can do about it and I decided a while ago that I would go natural in colour. I guess we will see as it grows.

At times I get impatient and frustrated and I allow myself to feel this. I feel like I’ve been granted a second chance at life, I’m alive but not living (that’s the frustration). I just want to get back out there and live life. I believe that you can’t get over something unless; you accept it, feel it and then go through it. Then you can come out the other side (of whatever it is). This cycle happens constantly for me.

Being pretty much home bound the last two years I have become aware that my confidence in everyday things has lessened, even social outings with friends I have struggled internally. I have planned outings and catch ups with people and have had to cancel many times due to feeling unwell. I was invited to the work Christmas party (I haven’t been able to work for two years) and some people I’ve not seen in that time. I’m not sure why I was so nervous because they were all so welcoming and lovely… the things we create in our minds… as long as we are aware of these self doubting beliefs we can challenge ourselves to see if the fear is real or made up.

Allow the loneliness to come and go, because at this stage you still may feel that people just don’t understand unless they have walked the walk in your shoes. Being grateful for the things you’ve been given is a wonderful way you can ease this feeling. Focus on the good! Allowing people to help you is also so helpful for you and letting them know that you are still not feeling right, this all helps the people around you to understand. It’s important to not push people away. I am very lucky I have been blessed with beautiful friends and family.

I hope these posts are helping in some way, especially giving an idea to those who will have to have a Stem Cell Transplant. I wish the New Year brings good health to you all and that a new year can spark a new beginning in many ways and for many things. I know one of my goals will be to begin my journey of returning to the beach every morning before work like I used to before I got sick. X

💖✌🏽

15/11/2023

LETS TALK HAIR
Ok it’s taken me a while to come to terms with my new hair. Especially during my bald months! There are very few photos of me during these past months because I have been conscience of how I look.

It has been such a massive internal process to understand just how much I identified my identity through my hair (this also includes loosing eyelashes and eyebrows too). There is nothing to hide behind, your face is exposed, the shape of your head is exposed and it’s surprising just how cold your head gets without hair.

I decided about a one and half months post transplant that I wasn’t going to wear my hats anymore as the weather was getting too warm to wear them. So I went pretty much bald out in public (peach fuzz) and I was pleasantly surprised to see that not many people showed reaction to how I looked. Each time I went out without a hat on I got a little more braver and a little more confident. I also decided that I didn’t want to wear wigs. This is a personal decision that only you can make. This was going to be my ‘new normal’ and I really needed to embrace that. I also need to let you know that I had huge support from my friends and family when I made a conscious decision to go naked 😆.

Today I had the thought to take a selfie and post it. I want to do this to show others who will go through a stem cell transplant of what your hair may look like at 110+ post transplant. I’ve not done anything to my hair, just let it grow out. I also wanted to do a selfie because I had made such an internal issue of having no photos of me without hair and this photo shows a shift in my attitude towards myself and how I look. Pushing outside the comfort zone. It will be interesting to see how it grows, if it will be the same as before or different.

So this is me with short hair, eyebrows and eyelashes all growing back. Yay! And also some photos at various stages.

08/11/2023

On the 5th November I celebrated 100+ post transplant. A small gathering of nearest & dearest. It’s a milestone & I feel extremely fortunate to have made it this far. I had my three month bone marrow biopsy last Wednesday & this Wednesday was told that I am officially leukaemia free. I broke down and cried. It’s the first time in 20 years that I’ve been free of this disease. It’s everything I could hope for!

In saying this It hasn’t been easy at all. I suffer from chronic diarrhoea daily, mucusitis still & exhaustion because my haemoglobin is still very low. I am tired of taking so many tablets morning and night & suffering the side effects. So many of my days are still lying in bed or on the couch. I’ve had to cancel many catch up dates with friends because I never know how I’m going to feel on any particular day. I can’t go back to work. No body knows the constant feeling of you being & feeling unwell because you look normal on the outside. This is not a whinge or a complaint at all, because I don’t roll that way. It’s the facts & the reason why I post on this blog is to give information. I understand it’s all part of the process of beating this disease & feeling this way is completely normal. I have a long way to go.

I wanted to share with you an experience I had in the waiting room on Wednesday while waiting for my haematologist. I had the privilege of talking to a few of the other patients & hearing their story about their journey to be disease free.

One man from canada originally & I began talking. I asked him if he would share his story with me. He said that he had a stem cell transplant 17 years ago. He told me that for the first 5 years after his transplant he was aware & conscience of the fact it might come back. He lived a life of eating healthy & keeping fit & he then relaxed into his life & kept on living not ever thinking he could (after so long) get sick again. He only discovered a few months ago that the disease had come back & he had to have a 2nd transplant. He became quite emotional as he was telling me this. He’s still in shock & devastated. Who would have thought after 17 years the disease would reappear … I cried with him too. I thought of his two little kids & wife. I hope I meet him again.

There were two other ladies I spoke to that morning. Both their stories were as moving as the man’s. One lady had her stem cell transplant 7 days before me so we would have been in the ward at the same time. She found out a month ago her grafting from the donor didn’t take & the disease was in blast phase again. She’s now starting at the beginning again and having to take medication to control the disease. She didn’t even make her 100 days!

I got to thinking that there is no guarantee on how long I have. This stem cell transplant is a second chance for me. Sure these past few months have been really sh*tty & so will the next few months be but it’s part of the process. The end goal is to finally feel well and be healthy! Now I need to make some goals for my future; how I’m going to live my life? what am I going to achieve? how can I help make this world a better place? I need to make sure that this second chance isn’t wasted on me.

06/09/2023

DAY +40 TWO WEEKS HOME!
Just arrived back from my twice weekly hospital check in at the clinic and received some great news. The doc said that my new stem cells are grafting really well. This is such great news. Also being slowly weaned off the steroids too.

03/09/2023

It’s been a long time since my last post and there is much to catch you up on. Hospital was so hard for me. I had issues with my central line in my neck and they had to take it out and put a pick in my arm. As I reflect Im surprised that it was more harder on me mentally than physically. At times I felt trapped, alone, scared. The same thing day in day out. Not being allowed to feel wind on skin… it’s just not natural.

In saying this I often bought myself back to reality & remebered ALL the efforts of more people than I probably realise it’s taken to get me a new immune system. That’s when you go ‘this is my new normal’ and you learn to accept what is and then you learn to go day by day.

DAY +26 HOME FROM HOSPITAL!!!!
(Wednesday 23rd August)

Thank you to ALL staff on ward 7D at Fiona Stanley Hospital, absolutely brilliant at your jobs, I won’t forget your kindness & encouragement.

A few days prior to leaving the hospital they transitioned me off of all the IV medication & onto tablets (there were heaps of tablets morning & night) & I still had mucusitis in my mouth & throat so swallowing was arduous & very sore.

Coming home was an amazing feeling, but I was also a bit nervous about it because of all the unknowns & possibility of things going wrong & still having mucusitis. I had a friend (who works as a private carer) put her job on hold to come and care for me for the first 2 weeks. You really need someone who can give you your tablets, help you shower, make/change your bed, cook… I really couldn’t do much at all.

About two days into being back home I began to develop a rash that took about four days to spread all over my face. It was red, thick and itchy. I thought it might by GVHD but apparently it doesn’t really present in the face. The doctors were onto it straight away with a steroid cream and also a steroid tablet. It’s been almost two weeks and it’s pretty much cleared up and my eyes have returned to normal size rather then be really puffy.

The steroids have helped give me some energy and also an appetite. I’ve enjoyed both but will probably be asked to come off them. I’ve not been on steroids before and wonder if I will go back to having no energy or appetite at all?!

TABLETS
I found a AM/PM weekly tablet organiser sufficient. I’m learning how to do my own now.

KITCHEN/FOOD CLEANLINESS
I already owned a fruit & veg wash but have ordered more. This is to clean ALL vegetables & fruits from pesticides that come into the kitchen. It’s a must! I’ll take a photo you can order online.

We have allocated one chopping board for meat only & others are for fruit & vegies so no cross contamination.

SERVICES
cancer council
Leukaemia Foundation
I’ve organised three deep cleans to be done of where I’m self isolating. You can get food stamps, fuel stamps and other small things to help with the costs of living and having to go back and forth to the hospital (I’m doing twice a week).

It’s now DAY+37! Im so stoked I’ve made it this far. X

11/08/2023

DAY +14
One more day closer to a Leukaemia & medication free life 💪🏽💪🏽💪🏽
Thank you for your strength, support & your pearls of wisdom.

03/08/2023

DAY +6
It’s day +6 and the last few days have been getting used to routines and becoming acquainted with the staff. I found that each day has been a waiting game upon waking wondering, if it’s the day that I’ll begin to have all of the bad symptoms that are in evitable to have. There’s also is a part of me that was thinking will I be one of the lucky ones and not have any symptoms that were too unkind.

Well, it turns out today I woke with the beginning of mucositis. My tongue is swollen, my throat is hard to swallow, and my mouth is very small and tight. As the day has progressed so has the mucositis. I’m also being fed (receiving nutrients) through IV. I have had this the last two nights because my appetite has decreased significantly and I wasn’t eating enough food. It runs for 12 hours from 6 pm to 6 am daily. This also has all the electrolytes and other vitamins and minerals that my body needs to stay strong.

My body has bloated quite significantly due to all of the fluids that are being pumped through the IV into my body. I am, however trying to still eat a little bit during the day to keep my digestive system working.

I had a bit of a panic attack last night. Talking about it with a counsellor today I recognise that it came from a place of feeling overwhelmed. You not only feel overwhelmed you feel that things are out of your control because everything is been done to you and it’s just not a normal way to spend four weeks cooped up in a hospital room. I was able to call my friend Sharyn, who has been through a stem cell transplant at Fiona Stanley Hospital just over a year ago now, and she reminded me ever so gently and kindly that my body needs all of the IV treatments in order to be able to successfully house my new stem cells, my new immune system. She also reminded me that it’s not forever!!!

There is an army of people behind my recovery, all the scientists, dietitians, nurses, doctors, specialists, family, friends … they are all working behind the screens so I can have an opportunity to live a healthy life.

I’m not sure how much longer I will be able to keep this journaling up, but I will do it for as long as I can. Then when I’m back up running again, I will fill in the important experiences.

Thank you so much for your support, your messages, your love, your friendship, it really does make such a difference knowing that I have people cheering me on!

Oh and if you’ve messaged me and I’ve not been able to get back yet, I definitely will x

29/07/2023

DAY 0
TRANSPLANT DAY 28th JULY
“It will go smoothly, without complications’

Today is the day that begins the rest of my life.

I thought when this day came I’d be super happy & charged because it is finally happening… but I wasn’t. I was troubled to know why I wasn’t excited, It felt like I wasn’t being grateful if I wasn’t feeling happy.

It turns out I was just scared. So many incomplete thoughts. What if this didn’t work? What kind of symptoms would I get? How bad would I get them? How long? Will I suffer with GVHD (Graft Versus Host Disease)? Will I be leukaemia free? Will I be medication free?

The new donor cells were coming in late from somewhere overseas. They arrived up in my hospital room just after 8pm. I was allowed to have my Dad and my friend in the room with me. One of my brothers has been sick so he hasn’t been able to see me. We Face Timed each other and they had me on their tv screen (like watching a movie). Between Dad and my friend we got some video footage of the historical moment. Which I will post later.

A stem cell transplant is like a blood transfusion. The stem cells which were a dusky pink colour were taken off the frozen ice and up onto the IV pole and flowing through my blood within 30minutes. I cried, I got emotional, we all got emotional. My family who were watching from their home sung me Happy Rebirth Day, they all joined in. I quietly thanked my donor from a far for her gift of life.

Everyday since then I do my deep breathing work and I imagine my cells accepting the donor cells and working alongside of each other. Visualisation is powerful.

I found out that it will take approximately 4 months for my blood group to completely change from my original A+ to the new O+. I also found out that my donor whoever she is took about 4 hours out of her life to give me her stem cells. In a years time when I am officially allowed to write to her, I hope I can be living a life that was worth donating for!
I will be!!!
💓

28/07/2023

DECORATE YOUR ROOM
This is a suggestion by a friend who is now one year post transfusion & she is doing amazing! She suggested to have photos of the nearest & dearest because it helps on those sh*tty days/weeks.

Lee’s Stem Cell Transplant Journey 2023

15/03/2025

15/05/2024

07/02/2024

28/12/2023

15/11/2023

08/11/2023

06/09/2023

03/09/2023

11/08/2023

03/08/2023

29/07/2023

28/07/2023

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