Round 4 – last trip to chemo land

It has taken me a long time to get back on the blog saddle, because the final battle with chemo and the decisions I faced with my family afterwards consumed the last of my energy, emotions and brain power.

So now my brain has rewired and is starting to process what on earth happened! So I’m stepping back in time and finishing off my post about my last trip to chemo land and all of the fabulous souvenirs I now treasure from the trip πŸ˜‰.

I made it. Only 5 more days of having a toxic drug ravage my body and let it do what it does best – seek cells and destroy them.

It was mid March 2018 when I was admitted for my final round of chemo. It was late at night because the ward was busy and the cubicle I was going in to needed to be deep cleaned, which, from the description I later got from a cleaner on the ward is quite an intense process! It opened my eyes to the world of infection control and the measures taken when our immune system goes offline.

So, I get in to my cubicle, settle in, adjust the hospital bed which seemed to whinge at me with every touch of the button, attempt to ‘fluff up’ the plastic pillows and psyche myself up.

The lovely, familiar nurses bring in the first bag, I was feeling ok about it because I was prescribed half dose Cytarabine for my final round because of how long it took for my blood counts to recover after round 3 and the subtype of AML I had didn’t require the full dose.

So the bag was hooked up to Mr Hickman and I felt it pump through my body as I drifted off to sleep. In the morning, I felt off and started to question if I’d been given the right dosage of chemo. Paul came to visit at the perfect time, I was about to have my second bag of Cytarabine when he asked the nurse what dosage I was about to have. The nurse said I was on the highest dose, the same as round 3.

So, not the best thing to hear! I was then reassured that my precious bodily organs were ok & apologised to at length by the nurses and consultants. Anyway, things were altered & although I still ended up having more chemo than intended I rode through the waves ok.

I was discharged home a few hours after my final bag of chemo to regroup and wait for my final dance with neutropenic sepsis.

I hated this part the most. The abrupt fever came roughly a week later, at night, of course! The call was made to Paul’s Mum to come and swoop Leo up again so I could go to hospital for urgent treatment. I knew I would be away from Leo for at least 10 days, so saying another ‘strong’ goodbye to him while he was hysterically crying was just horrendous.

All of the resources and support in the world couldn’t ease the pain and helplessnes I felt in these moments. I just grasped on to the hope that this would be the LAST time cancer and it’s brutal aftershocks would strip me away from my beautiful boy.

I was admitted back to the familiar ward. Blood tests done, standard chest x-ray completed at 2am, the creepiest time to be wheeled around a hospital, especially when you’re feeling as hot as the sun, nauseous and delirious.

This time around it was a sinus infection on top of sepsis that took hold. The blood clots that I was blowing out of my nose were both disgusting and impressive! The antibiotics, blood transfusions and a whole lot of hope and love saved my life again.

So this brings me to my next life changing moment. I had only been living in England for 2 months before my health went downhill and things spiralled out of my control. Even though Leo, amidst all of the chaos, managed to complete his first ever year of school and develop some strong friendships, Paul and I didn’t and couldn’t settle. Although cancer wasn’t killing me anymore, it still hurt. I knew it was going to hurt for the foreseeable future. We decided to ‘restore factory settings’ and return back to Melbourne, Australia.

This was another decision that wasn’t taken lightly, but our lives had been forever changed & I needed to be home. I find it hard to describe the feelings that I felt during this time, all I know is that everything changed, our plans changed and I had to reboot with my family.

So our new plans didn’t come as a huge surprise to my medical team, their support and realism was faultless.

During my final outpatient appointments in Newcastle, Paul and I were able to catch up with the other warriors undergoing treatment for blood cancer. I mentioned one lady in my earlier posts, who I will never forget. She had just finished her appointment and was visibly in shock and tears, her husband said “it’s come back”. The reality of this shitty disease rared its ugly head.

After my appointment which revealed that I was still in remission and would be safe to fly home soon, I had feelings of survivor guilt, not relief. Another mental hurdle to overcome. Another ‘simple procedure’ was booked in as well. The removal of Mr Hickman. There’s no denying it or sugarcoating it. It was weird and painful and I channeled my ctazy breathing techniques that I used when giving birth to Leo 😳. Dr Alex was in his absolute element completing this procedure and I knew I was in great hands. The stitches were removed 10 days later by TWO nurses, because one couldn’t quite see properly the day of my appointment, always comforting to hear things like that πŸ™„

It was so amazing to have the line removed, it was ALWAYS on my mind and in the way! I know I’m lucky to have kept the same line in for the 6 months of treatment, because it’s a common source of infection and can be replaced multiple times.

A few days later I received this text from our friend and this was the last contact I had from her.

“hi louise I was going to send a
message to tell you my news its not good. My leukemia has returned and at clinic yesterday was told I have 6 months to live Louise follow your dreams go with paul and leo back to your family and good weather, sorry for this sad news x”

What a beautiful, selfless soul, taken by a horrendous disease, and the reason why I’ll keep raising awareness!

So, we did follow our new dream and returned to Melbourne where we have been since June 2018. My family completely surprised us at the airport and I’m sure I surprised them with my long haul stench and new hairstyle πŸ’‡πŸ˜‰

I have left out so many details about the process to move back to Melbourne and the intertwined emotions that took place because this alone would be a novel! I will say that there are so many events and external factors that go on behind the main scene that aren’t often talked about so I’m planning to post about these in the future too.

Until then, I will sign off by saying that I’m happily still in remission (13 months now), and I’m well linked in with a hospital here. Leo has settled in to a new school and we’ve made some fabulous friendships in such a short time. Paul’s career is looking bright and hopefully I’ll be back in the world of OT again soon.

Now I’m truly addicted to life and having energy again! I no longer have trouble getting to sleep at night, because I no longer fear that I won’t wake up. Fear of relapse still grips me like a vice at odd times, so no doubt I’ll post about dealing with these moments.

So now it’s time to enjoy the buzz of life again and prioritise things that really matter, family, friends, adventure, coffee, good food and tunes πŸ˜πŸ‘Œ


Round 3 – almost a knockout

I was pre warned about this round. I was told it would “steamroll” me, and that it did. It was the 18th January 2018 and this date would signify the start of my consolidation chemo, to ensure that any potential leukaemia cells still floating around were assassinated! The plan was to admit me for 5 days so I could receive high dose Cytarabine twice daily on days 1, 3 and 5, each dose running for 4 hours. I was admitted on to a ward I knew well and I was in a shared room.

One patient was in her late 70’s diagnosed with terminal lung cancer. She often went out for ‘fresh air’ which I quickly learned was code for a smoke. We got chatting and laughing, and she said that she has had a great life and wishes the same for me. Even though she had heard devastating news, all she wanted was for me and other young people to beat the crap out of cancer and grow old.

Another patient in her 60’s, was completely withering away, refusing to eat, refusing to have a feeding tube inserted. She also had a husband that visited daily who had dementia. I felt terribly sad for her. I did hear later on that she had improved, I’m glad she found some fight.

The third patient was an incredibly quiet lady who had finished her treatment and was waiting to be discharged home. I think what I found the hardest about being in a shared room this time was the complete lack of privacy and confidentiality. The difficult conversations and information I heard the doctors and health professionals say to these patients should not have fallen on anyone else’s ears but their own. I know this can’t be helped sometimes, but it made me think as a patient and a health professional on how I would do it differently.

Anyway, that’s a feel of the room I was in. I wasn’t feeling that well before the first bag of chemo was administered, so I knew I was going to be in for a rough ride. I experienced all of the side effects possible, except for a full body rash and mouth ulcers, which kindly didn’t come to the party. I had blinding headaches, my eyes hated the light, I had chronic fevers, nausea and vomiting, bowel issues that I won’t go in to, bone pain topped off with muscle spasms. That all happened and I had only finished day 1. I was honestly thinking, that will do now, surely, my body has had enough!

Anyway, I got loaded up with more anti-everything drugs and that eased a lot of my discomfort and my body and mind kept cracking on. Paul visited me daily and kept my spirits up and brought in snacks to keep me powered up.

I had to stay an extra couple of days after the chemo cycle finished because I was too unwell to go home. Then I got home, but quickly bounced back in to hospital, with the flu. So I got an instant upgrade in to my own cubicle. I started on Tamiflu, rested up and tried to eat whatever I could. It was a 10 day admission and it was hard. I was stripped away from Leo again and my blood counts weren’t rising. Netflix, music and messages from family and friends really pulled me through mentally this time. Distraction and escaping from this brutal time really worked for me.

So I finally got home to my boys and some ‘normalcy’. It took about 50 days for my blood counts to completely recover after this round of chemo, so it was a hard slog. However, I managed to put on weight, reconnect with civilisation, by that I mean I went out to my favourite cafe (Flat White in Durham) and I went to the playground with Paul and Leo for the first time in six months!!! I even managed to do some grocery shopping! These things rejuvenated my soul! I don’t think I’ve EVER been as excited about a playground or grocery shop in my life!

I still had to go back and forth to the hospital for routine checks and blood and platelet transfusions. On one of these days, Paul and I went to a Maggie’s Centre πŸ‘‡

It’s a wonderful centre, they are an oasis for people living with cancer. We had cups of tea as large as our heads and relaxed. We talked and laughed about everything but my disease and treatment which was tge respite we needed.

So, I had to snap back in to the reality of my treatment once my blood counts recovered. The consultants agreed that I should progress to round 4, but to halve the dose of Cytarabine (everything in my body sighed with relief when I heard this). I agreed. I could finally see the light at the end of the treatment tunnel!

What is Acute Myeloid Leukaemia (AML) ?

I discovered that there is a whole lot of scary information out there on AML. I was given a booklet published by Bloodwise when I was first diagnosed. To be honest, I found it too overwhelming to read at first and I refused to acknowledge the statistics that it included (ignorance was bliss early on).

I started researching the condition more when I felt up to it and I think everyone will approach this differently. Billions of new blood cells are made daily from our bone marrow, mostly red blood cells, but when you have leukaemia your body makes more white cells than it needs. There are two main types of white blood cells, lymphoid and myeloid cells. Leukaemia can happen in either type. In AML the myeloid cells grow rapidly and abnormally and suffocate all of the other healthy normal blood cells. Eventually there aren’t enough red blood cells to carry oxygen, platelets to clot the blood or white cells to fight infection. So things get serious quickly!

I found a short, to the point video useful in explaining the condition, I’ve popped the link at the bottom of this post.

I downloaded information from Bloodwise, Leukaemia Care and the Leukaemia Foundation as I progressed through the treatment and I found these organisations really useful.


Round 2- Cancer puts a new spin on Christmas

So after my few precious days at home after hearing life shattering news and then having life saving round 1 treatment, my blood counts had recovered and I was ‘well enough’ to head back in to hospital for the next round of induction chemo.

Dr J, scheduled this round in so I could get it done and be home for Christmas. This round wasn’t as long as the first, just 8 days, the Cytarabine was via a syringe twice daily and then I had three doses of Daunorubicin (the same colour as Irn Bru, slightly more toxic) via IV pump over a couple of hours on days 1, 3 and 5.

I was so much stronger going in to this round. I managed to regain some weight, physical strength and mental power. I had endured so much prior to this round and survived, so this helped me trust my body again and trust in the treatment.

I was admitted on to a different ward and in a shared room with three other inpatients, so that took some adjustment, but I quickly got to know the nurses and the other ladies in the room. There was one lady, in her 60’s who had also been diagnosed with AML not long before me, and was at the same point in her treatment, so we were able to have a good whine to each other about it, and we still do to this day.

The familiar sounds of the IV machines and the trolleys going down the corridors all came back to me. There always seemed to be a nurse on each shift that loved to belt out a witty song or two. I will always remember a nurse who sang ‘Monday Bung Day’ to the tune of ‘Monday Monday by the Mama’s & Papa’s’. She lightened the mood with her wit and dark humour, which is what I enjoyed dabbling in too!

So I settled myself in by loading the cupboard with snacks that I could tolerate. I discovered that the only things that didn’t taste like metal or acid during chemo were Ritz crackers, boiled sweets and M & M’s. For some strange reason, this was the only chocolate I could eat after round was tough as I was (still am) such a chocolate lover!

I had a craving for gingerbread, which I had never been a fan of. I know it’s advertised as a great natural reliever of nausea, but when I had eaten it in the past, even during my pregnancy, it made me gag. So I thought my body was completely screwed up at this point!

So, another golden moment happened. A family friend from Australia and his lovely fiancΓ©e, happened to be in the UK and organised to visit me in hospital. This visit was really special to me and Paul, not only because of the generosity and effort they put in to visiting me but also because it felt like all of my family were in the room too! Weird. I’m not usually spiritual, but I guess cancer and chemo can change one’s wiring!

What was also special about this visit was the amazing present. Proper gingerbread and wine! The nurses wouldn’t put the wine through my line (I thought that was quite a witty rhyme at the time), so it was saved and will be enjoyed when I finish this marathon.

The thing that I discovered with chemo is that you never know how you’re going to react to it. Everyone is different, every round is different, every chemo is different. This round was smooth. Yes, I felt nauseous at times, experienced weird tingles in my limbs and my eyes got sensitive to light and when I had the Irn Bru I felt like my head was going to explode, but I was able to eat and sleep relatively well. I also had the luxury of not having to fight pneumonia or any other infections off at the same time. These small wins were what kept me positive.

Anyway, getting to the point of my post. This round coincided with the lead up to Christmas. Being seriously ill and being surrounded by seriously ill people at this time conjured up some mixed emotions. It was enlightening to observe the behaviours of the nurses at this time in comparison to me and the other inpatients. The nurses would talk to us about how crazy busy the shops were, how they didn’t feel like they had enough time to get all of the presents, prepare food and all that jazz. I wished I could have traded places with them.

Meanwhile me and the other inpatients felt calm and nostalgic. I remember feeling so grateful to be alive and well (ish) and we were all quietly hopeful we would be discharged before Christmas day.

I was discharged from hospital on the 23rd December. I felt like I had been hit by a minivan (bit better than the bus and train that hit me in the first round) but I had never felt happier to be home! I was able to watch my boy open his presents on Christmas morning and just be with my family. It was a precious time.

I picked up quite quickly after round 2. I didn’t end up being admitted to hospital with any infections, another small win. It’s hard work in between the chemo sessions, I actually found these times harder and more axiety ridden than when I was actually having cheno. The risk of getting an infection is high so our home became heaven for those with a phobia to germs. We were all washing our hands a thousand times a day, popping sanitiser in each room and in the car, using separate bathrooms, washing my clothes separately from the boys. The list goes on, but it was our way of keeping me healthy and it felt like we were in control of something.

So other than being ridiculously clean I was also eating some seriously good food. Lots of carbs, ice cream, chocolate, peanut butter. This was all under the guidance of a Dietitian . I was a slight build before AML, and to date I lost about 4kg so I needed to calorie load so I would be strong enough for round 3. So that’s what I did.

To sign off this post, I thought I’d include a photo using a fitting snapchat filter. When you have AML, you’re either in hospital getting chemo, or treatment for an infection. The rest of the time is spent being in isolation, trying not to catch anything.

Round 1- blood, sweat, tears, remission!

Well, I had a gruelling 5 weeks in hospital post diagnosis, Paul stayed with me day and night on possibly the most uncomfortable pull out bed we’ve ever seen, but he didn’t care about that.

It’s surprisingly hard to describe these weeks. It was like I was transported to a different universe. I was in complete survival mode, in isolation, completely dependent on Paul to help me, transfer, walk, toilet, shower and dress myself. What a legend he was (and still is). I had never felt so weak and powerless before, but I knew it wasn’t going to last forever. I just had to get through each moment and tick that off as a milestone!

The weeks consisted of a 10 day stint of induction chemo (Cytarabine and Daunorubicin), countless transfusions, learning to walk with an IV pole, a battle with pneumonia, bacterial infections, haemarrhoids, bone pain, muscle aches, injections, determination not to get a pressure injury, a strong desire to eat chicken and cheese (I hadn’t eaten chicken for years prior to this) and a shit load of emotion.

My hair started to fall out, 2 weeks after chemo ended. I would wake up and see hair on my pillow and then chunks would come out when I ran my fingers through it, brushed it, washed it. Paul had his hair clippers ready for when I was ready. It needed to be shaved off, it was getting messy and I needed to feel in control of something.

It’s a vulnerable moment. I remember looking in the mirror at the bald me and seeing the physical reminder that I was sick, that I had cancer. Paul and the nurses were amazing, complimenting me on my ‘well shaped skull’ and reminding me that my hair will grow back. It was a relief to have it off, and one less thing to deal with in the morning! This new look also gave me a reason to shop for beanies and headscarves! My sister sent me beautiful headwear, which to this day I live in, so it’s not all bad.

I barely saw Leo in this time because I was either too sick or he had a cold so I couldn’t risk getting infected. There’s no dressing that time up, it was dark and painful for us. As hideous as this time was, Leo took this darkness and shoved it back where it belonged! He made me bright cards that decorated my hospital room and told me funny stories when we spoke on the phone. It doesn’t sound like much, but my god at the time, and still to this day I’ve never felt so much pride for a person! Kids can make you understand life again.

I took to social media during this time. I did it because I’m just an ordinary person that got struck down by something unimaginable to me, and I was reading stories about other young people with blood cancer who had a similar journey or had lost their lives to this devastating disease. I have a close friend who shared her husband’s journey with Leukaemia, and their strength and determination inspired me to fight on!

I also wanted to raise awareness of AML and its symptoms because I had no idea about the reality of blood cancer and the true impact it had on a person’s life. So if my story helped anyone, that would be a bonus.

The messages of support I received after I posted on Facebook still overwhelm me and all of the messages lifted me and spurred me to fight on!

Parcels started to arrive from my beautiful family and friends and my hospital room was transformed with positivity! I was blown away by people’s generosity and the products that are out there to help people going through chemo! I will pop links in this blog (if I can figure that out) about the products, because they all helped me deal with side effects from nausea and hair loss to shedding skin like a snake!

So, some good medical news finally came my way! I was told that my precious neutrophils (never talked so much about this blood cell in my life) had returned, my bone marrow was recovering so I could go home for a few days!!

To be honest, I think I went in to shock when I went home for the first time, or I was still spaced out from all of the meds! I longed to be home with my boys and it was also this vision that got me through the darkest times, so to actually be home was just amazing, but I just didn’t know how to deal with a ‘new normal’ or how to live with out a nurse buzzer!

I also appeared to draw blanks in my brain when I thought about how me and my family would adjust. I was also concerned about how I could physically get up 3 flights of stairs to my bed!

As an OT this should have come easily. I’ve worked with many people with chronic disease’s and various disabilities to regain their independence at home. I even gave presentations on how to conserve energy and adapt activities of daily living. I should be a star at managing all of this! I was so wrong. Absolutely nothing can prepare you for a catastrophical life interruption and it’s no easier when you are both a health professional and a patient.

What I can take from this brutal learning experience, is that I now see things from both sides and I will hopefully be able to work with people in a different way when I return to the working world.

Anyway, I pulled myself together and completely relished in the time I had with my boys. I felt so incredibly grateful to be alive and grateful for the support I was receiving!

Right, moving on. Bone marrow biopsy time, this time it was to see if the chemo had worked. This was my second time of having this ‘simple procedure’. It wasn’t pleasant, but I didn’t grip Paul’s hand as tight this time either, I was feeling stronger and knew I could go home afterwards if the results were ok. Happy days.

Dr J, came in to the treatment room and said quickly and happily “You’re bone marrow looks fantastic, you’re in remission”. Tears fell hard again, this time they were tears of pure relief and happiness! We also met with a Leukaemia nurse, who explained that her role will be to review me in all of the outpatient clinics I attend for the rest of my treatment. She has been nothing short of fabulous!

We knew this didn’t mean I was officially cured, but it meant we could crack on with chemo because it was killing the cancer! I also didn’t need a stem cell transplant. I know people who have been through this and know that my version of gruelling and their version are dramatically different. Absolute heroes in my eyes.

So that’s round 1 of my battle to fix my broken marrow.

πŸ–• sending a big FU to blood cancer

Charlie Bear and Leo

I wanted to share this story in case there are people going through this who also have young kids.

I have popped a photo of Leo cuddling a ‘Charlie Bear for Cancer Care’ teddy at the bottom of this post. This is a local charity and shop at the hospital. Wonderful cause. Leo was starting to get upset because I wasn’t home yet and was getting worried.

A wonderful Palliative Care nurse suggested that we buy a Charlie Bear and to tell Leo that he’s a magical, caring bear and when he gives it a cuddle at home I will feel the cuddle in hospital. So we bought the bear, I gave it a massive cuddle. Paul took the bear home to Leo and told him the story about Charlie Bear. Leo fell in love with the bear and the whole ‘magical’ side of it all. Best of all, Leo felt better.

To this day, Leo still sleeps with Charlie & when I’m in hospital and talking to him on the phone, he cuddles Charlie and me at the same time ❀️

“Simple Procedures”

I’ll keep this short and somewhat sweet.

Before I started chemo and to find out what subtype of AML I had, a “simple procedure” called a bone marrow biopsy needed to happen. So basically, you lie on one side in a fetal position while the doctor inserts a needle in to the back of your hip bone to suck out some bone marrow.

Well, I engaged what strength I had left to get through this. The doctor was chatting to Paul about Australia while he was completing the biopsy and in between their chats about the heat, cricket and beaches the doctor was complimenting me on how well I was coping.

I remember the doctor saying, ‘Aussie’s are bred tough’. Meanwhile I was cutting off circulation in Paul’s hand and wanted to scream “WHY AM I AWAKE FOR THIS? ”

Anyway, I can confidently say that the following bone marrow biopsies were much easier. I felt better physically and mentally for the next ones and apparently the leukaemia cells that were in the bone marrow initially made it more painful and the procedure itself took longer. I still think we deserve to have some happy drugs before each one though!

Another ” simple procedure” that I endured was having a Hickman line inserted. This is how the chemo, all IV meds and transfusions would be administered. An amazing invention and it saves veins!

So I was taken in to theatre for this line to be inserted. Hands down , the strangest thing I’ve ever experienced.

So the ‘Hickman Line surgeon man’ I explained what he was about to do. Basically, he was going to insert a thin tube in to my jugular vein, so a couple of cuts will be made one near my clavicle, the other lower on my chest and a bit of ‘tugging’ will be felt. All guided by x-ray. Ok.

I was then asked if I would like to watch it on the screen… My instant response, “um no, can I watch Sex & the City instead”. Nurses had a laugh. ‘Hickman line surgeon man’ keen to get on with it, put a plastic cover over my head so I couldn’t see anything.

Again, all that was going through my mind was “WHY AM I AWAKE FOR THIS? “.

Thankfully a lovely nurse who sensed my vulnerability and anxiety held my hand throughout this “simple procedure” and cheered me through. There have been and continue to be golden moments and golden people (which I know I’ve written about in another post), this nurse is on that list.

I googled this procedure afterwards. There was a common theme. General anaesthetic or some sort of relaxant was used πŸ€”

To make up for the lost chances to be knocked out during one of the toughest periods of my life. I now don’t hesitate to ask for morphine, or anything going really when I’m an inpatient πŸ˜‰

Signing off this post by sending strength to anyone who needs it and a big FU to blood cancer β€οΈπŸ–•

November 3rd 2017- darkness and golden moments

This is my first post. I really have no idea how to operate in Blog world, so hopefully I fumble through ok!

I’m actually well in to treatment for AML, but oddly enough, just really starting to process what has actually happened since November 3rd 2017!

I needed an outlet, and after speaking with fellow inpatients, reading other blogs and generally having a complete shift on the perspective of life I thought I’d have a go.

Sometimes it will be deep and meaningful, a bit sarcastic and I’ll drop some swear words in for therapeutic reasons, because cancer is an asshole! Overall, if this helps anyone going through something similar then it’s worth it.

So I thought I’d start off with a little blurb about my lovely, simple life, when my bone marrow was at its peak!

My husband (Paul), son (Leo) and I touched down in the UK from Australia at the end of July 2017 to start a new, adventurous chapter in our lives. This decision in itself was not made lightly and saying goodbye to our family and friends in Australia was one of the hardest things we have ever had to do. Paul and I will forever be torn because I’m an Aussie and he’s a pom pom, sorry English.

Anyway, we hit the ground running, doing all the practical life things like getting Leo’s school stuff sorted, finding our own place, getting a car, searching for jobs. We then became proper Castle hoppers, pub reviewers and challenged ourselves to find the best coffee in each village we visited.

Things were going to plan and as hard as it was to be away from my family and mates, I was starting to feel settled and we had plans.

I was lucky enough to get a job as an Occupational Therapist (I’ve been one for 10 years) at a Hospice, in the same place we lived and where my son went to school! This had never happened to me before. I’ve always had a long commute to work, so I was beside myself with relief!

I started my new job. Instantly in love with the new challenges before me. I was getting tips from a textbook called ‘Occupational Therapy in Oncology and Palliative Care’. Oh, the sweet irony of it all!

One week and one day in to my new job, I came home and started the usual nightly routine with our son. I then felt a wave of fatigue hit me & I couldn’t be upright. I retreated to bed, thinking I must have come down with the flu. The stress of moving & starting a new job must have caught up with me.

The fortnight that followed was frustrating and just plain shit to be honest! I knew something wasn’t right, I was feeling symptoms I had never experienced before in my life and I was not improving.

My GP, and the nurses at Urgent Care kept saying the same thing. “It’s the flu, go home and rest”.

The best diagnosis I received was from an Urgent Care nurse. I was clearly unwell with nosebleeds, bruises, no appetite, weak as a kitten, drenching night sweats, feeling faint. The nurse said, “you have one of those viruses that can last weeks and weeks”. The reason why I was faint was because “you haven’t been in the fresh air for a while…” What a ‘insert any profanity here, they all ran through my head’

No swab for flu taken, no blood test taken because Urgent Care doesn’t do anything useful like that! I’m still in shock at this system and already from my journey I’m learning that this has been a common experience by people diagnosed with an acute leukaemia. Thankfully organisations like Bloodwise have launched an education program targeting GP clinics. It’s a start at least.

Finally, on the 2nd November after some coaxing from my superstar husband, the receptionist at my GP clinic booked in a blood test for the following day.

Well I’ve had some bad days before, as everyone has, but now I know what a truly shitty day feels like. I had the blood test at 3:30pm. I received a call from ‘the lab’ at 7:30pm the same day and that man I spoke too was the first person to actually listen to me.

This man was the catalyst in saving my life. I was extra emotional because I pictured my sister who is the Queen of Blood in my eyes (pathologist/technical officer/lab queen) analysing someone’s blood and knowing what lies ahead for that person.

After that call, life as I knew it changed. I was rushed by ambulance to a Haematology unit. As I was being whisked away in an ambulance, which might I add are impressive, they have very bright internal lights, but that aside, very impressive. I’ve never been in one before, so I do remember thinking amongst the chaos in my mind, ‘ha, the siren isn’t loud at all from the inside’. I do think these side thoughts saved my sanity.

Anyway, Paul was by my side, both minds racing. Time stood still yet felt more real than ever. In the meantime, Paul’s parent’s & sister swooped around Leo and kept his beautiful, simple life rolling without a second thought. I’m completely indebted to them.

When I arrived at the hospital, I remember the urgency of the medical team, the speedy blood tests, the questions, my racing heart and mind. Throughout all the chaos I also remember the warmth, kindness and confidence of the staff.

Then the diagnosis came. The Consultant, Dr J, held my hand and delivered the words that devastated us. There are Leukaemia cells in your blood, it looks like you have Acute Myeloid Leukaemia (AML).

We need to start treatment urgently to save your life.

To be met with your own mortality in an instant is indescribable! This type of cancer violently strips everything away from you, in an instant, without remorse.

Then Dr J as kindly as she could and with tears in her eyes, went through the motions of what she had to tell me. She told me that the treatment I was about to start will be intense, I couldn’t consider returning to work for 6 months and I won’t fully recover for months after my final round of chemo.

Dr J, then told me the side effects of chemo that need to be addressed at time of diagnosis because they can cause the most distress:

  • Infertility
  • Early menopause (for me this will be when I’m 40ish)
  • Hair loss

These proved to just be a drop in the ocean of what I was actually going to go through. I was so thankful that we were lucky enough to have Leo in our lives, all I could think about were other people who hadn’t even contemplated having a child, instantly having to decide whether to have their eggs or sperm saved and risk their lives (because treatment has to be delayed) or get on with treatment and risk infertility. See, blood cancer is an asshole!

Then after that information is digested, I was told that I would be starting on a heap of medications. Anti viral, anti fungal, anti biotics, anti period, anti clotting, anti everything! I would also need bone marrow biopsies and a Hickman line inserted into my jugular vein! Sure!

Tears fell hard and I just remember saying ‘what did I do wrong!’ The reply was, “you have done everything right, we don’t know the cause, it’s just bad luck…. we are going to cure you.” This statement circled round in my head and still does to this day.

I then did what you’re not meant to do and turned to Dr Google. All I remember taking in was, ‘rare’, ‘old men get it’, ‘live for 5 years’. I thought, well, I’m not an old man, so take that AML!!

I have no idea how or why I started reacting the way I did after the initial shock passed but it was like a switch flicked. I just felt pure grit & determination to face this shitty hand I was dealt.

I was just so desperate to feel well again, desperate to grow old with Paul desperate to see my son in that moment and also desperate to watch him grow up and give me grandbabies!!

The ocean between me and my Aussie home felt so much larger as soon as I was diagnosed.

The hardest part about telling my family and friends was not the fact that I was very ill and still unaware of my prognosis, but I knew how helpless they would feel being so far away. All I could do was reassure them by being positive, by telling them about the brilliant hospital I was in and having supports here in England.

Thanks to social media the world seemed smaller. My family send me messages daily, which is proving that a daily dose of sarcasm and humour helps keep the cancer blues away!

I’m grateful to my family and friends, they are cheerleading champions and I can’t wait to have a beer with them when this chapter is over!

So that’s a snapshot of the day when my life changed forever, the day I became a ‘cancer patient’, and the day that I began to appreciate and be grateful for life more than ever.

πŸ’• Sending love and strength to anyone who’s reading this and is on or has been on a similar journey πŸ’•

πŸ–• Sending a big FU to blood cancer