Operation stem cells complete

The hardest part is over. And what a journey it’s been. Isn’t it simply amazing that the many millions of stem cells were taken from my bloodstream, stashed in a bag, frozen, stored for months, defrosted, returned to their rightful home and are now back in my veins, swimming around, thriving and growing, making my body stronger again. Isn’t it simply amazing that six months ago, almost to this day, I was walking into a London emergency room complaining of some abdominal pain, about to find out that I had a giant tumour in my chest and cancer spread across my body and that my life was about to be turned upside down. Isn’t it simply amazing that I am standing here right now, an ostensibly healthy girl, my bald head and a huge scar on my chest really the only things that offer any clue of what I have been through.

Pictured above is my chest X-ray, taken on November 11, 2011 at North Middlesex Hospital in London, which is what began my whole journey. Below is what a normal chest X-ray looks like (the lump to the bottom right is the heart). As you can see, the large 'mediastinal mass' above and around my heart in the above X-ray shouldn't be there. My chest now, thankfully, looks more like the image below.

I was discharged on day 11 of my transplant, after two and half long weeks in hospital. When the consultant gave me the all clear to go, I had been expecting another 24 hours in hospital, and I was over the moon – just too tired to show it. I didn’t get to go ‘home home’ just yet – I had to stay in the apartments next door to the hospital for another week at least – but it was fantastic nonetheless.

The feeling of being discharged from hospital is such an elated high that for a moment, you almost forget the pain of the previous weeks (I said almost). But discharge day really is such a high, like being released from jail. Free from IV drips and constant blood pressure, heart rate and temperature observations. No more being roused from sleep at dawn so a path nurse can stab you in the arm for more blood, no more listening to other patients’ ablutions from the bathroom, no more staring wistfully out the window from the hospital bed as the sunshine-filled world moves on without you; no more stomach-churning hospital food, delivered in its pink plastic case; no more beeping monitors, no more peeing into a pan, no more daily discussions of bowel movements. But when I left this time, I got a bit emotional. I could barely thank the nurses without blubbering like a baby, because they really are the most amazing people ever, and made my two-and-a-half week stay in hospital so, so much more bearable. Additionally, the staff tend to take you under their wing, with nursing co-ordinator Trish exclaiming, “I’m so proud of you!” when she saw me looking strong and even managing to nick out for a coffee on day 10, and the haematology consultant congratulating me as he discharged me, saying this was the earliest I could have gone home.

All in all though, the stem cell transplant journey was a lot easier than I expected. My doctor and nursing co-ordinator had presented me with the worse-case scenario as far as the transplant went, and I’m glad they did. It is very, very hard to predict one’s treatment journey, as every individual is different. I was one of the lucky ones, as I noticed many patients around me at Peter Mac were doing much longer stints in hospital and facing far worse complications.

My major glitch – which was a serious one indeed, but luckily hasn’t ended up causing me too much grief - was the massive clot in a main vein in my neck. This had been caused by my arrow, or central line, which had become infected with a skin bug. On day 7, after the presence of the infection was confirmed, the doctors made the decision to pull the line out. There was a big nasty, swollen lump on my neck that was very tender and sore, and the doctors were concerned – my neutrophils were still at zero so I had no immune system to fight it. “This could have serious implications,” they told me, explaining that the infection could get to my heart, which would be catastrophic. Thankfully this wasn’t the case, which was confirmed by an ultrasound a few days later. In the days following the line’s removal, my white blood cells began to climb (which meant they could help fight the infection) and the antibiotics were also kicking in. I now have to take oral antibiotics for six weeks (one of which turns my pee orange) and also have to get twice-daily injections of a blood thinner called Clexane in order to keep this infection under control (which I have managed to give to myself – never thought I’d have the balls to stab myself with a needle, but it’s amazing what you can drive yourself to do in the right circumstances).

Another very small glitch I encountered, also on day 7 (a very action-packed day that was!) was a reaction to platelets. That day my platelets were low and so I needed a transfusion. I’d had several bags of platelets before, so no biggie. But for some reason, this time, towards the end of the platelets going in, my body grew itchy, my left eye and the left side of my face grew swollen and my sinuses clogged up (which meant I couldn’t taste the hospital food – a blessing!). So I was this disfigured, one-eyed Notre-Dame-esque monster for half a day or so. As Jacqui so helpfully contributed, “You look like something from Futurama.” Thankfully I had more platelets following that and a couple of blood transfusions, which went in without a glitch, so it was just that batch for one reason or another. The human body is a funny thing.

But apart from a persistent dull, sore throat, a couple of tummy upsets, some understandable fatigue, some night sweats, temperatures and mouth pain (remedied with some cocaine mouthwash – hospitals really do get the good stuff!), I didn’t really have that much to complain about. I didn’t get ulcers, I kept up my appetite, I was venturing out of the hospital just about every day that I wasn’t hooked up to the drip until my white blood cells bottomed out.

A rainbow outside my hospital window

One thing that really helped me was food. I’ve always had a more-than-healthy appetite (my parents threatened to lock the pantry when I was younger, and on inspection of my room, would often find empty chip, Tim Tam packets strewn across the place). I am a self-confessed food lover, to me it is one of life’s simplest and most luxurious pleasures. Through my last five cycles of chemo, my ravenous appetite has been a bit of a running joke. It is common for stem cell transplant patients to lose their appetite completely and in some instances, require nutrition via a drip or feeding tube. There were times when the hospital food made my stomach churn, and there were certainly days I ate less than others, and my weight did drop 3 or 4 kilos at one point, but those incidences were short-lived. A doctor at Latrobe Hospital told me to treat food as one of my medicines, so I was always forcing food down, even if the sickly sweet protein drinks the dieticians insisted on plonking on my food tray tasted awful, or the steaming pile of ‘butter chicken’ looked more like dog meat. I do believe this helped me a lot. My mother’s phone is full of text messages from me filled with random food requests: “I want a grilled chicken burger” or “Can you get me a scone” “I feel like Twisties” etc etc – God help the gopher who has to tend to my demands if I ever get pregnant.

Maybe the amazing one-point win by Collingwood on Anzac Day might’ve helped a little bit too … My mother managed to get an Anzac Day poster signed by Daisy Thomas and Harry O’Brien which sat above my bed during my stay in hospital. It incited both strong approval and extreme distaste, depending on who was looking after me. Of course I left it blue-tacked to the wall following my discharge, and one of the cleaners (a Pies fan) actually called me in the apartments and brought it down there for me.

Of course there are a million other things that have helped me get through this – a supportive network of friends and family (not a day went by without someone at my bedside), the amazing group of doctors, nurses and staff at Peter Mac and the power of positive thinking. There is absolutely no way I would be coping this well if I had to go through this feeling alone. I guess this is one of the most touching things about being sick; the kindness it brings out in the people around you and the inner strength it brings out in yourself.

I still have quite a bit of a journey ahead; I have this infection to sort out and I also have four weeks of radiotherapy about four weeks down the track, my final hurdle. Coming out of hospital, I didn’t feel the elation you would expect, as my body was still catching up. And the enormity of what I had faced and achieved just hit me. Five and a half months of emotion piled on top of me and some days I couldn't stop crying. But it felt good, like a release. For a while there I just fell into a heap. Now I have picked myself up again, but am interested in doing little more than some meditating, painting, gardening (I just planted a vegie patch), writing and reading (yep, I’ve gone from 29 to 60 years old overnight). I just want to find my inner hippie for a little while until I work out exactly how to embark on the next chapter of my life.

Speaking of chapters, my 30^th birthday is coming up. This is not really how I ever envisaged the lead-up to my dirty thirties to be, but I feel neither anxious nor happy about it. I am just happy to be here, simple as that (the post-radiotherapy/belated 30^th birthday party is going to be an unmissable event though, don’t you worry about that).

My hair grew back. Then it fell out again. 

Six months since I first went to hospital, and I am now in remission. After months of uncertainty, I finally know that I’m OK. I’m not cured yet – I won’t be able to say that for another two or more years – and for all I know, there could still be microscopic cancer cells floating somewhere in my body. That is something that all the doctors, tests and scanners can’t tell me – something we will never know. Which is why I have decided to go ahead with the radiotherapy, which will hopefully eradicate any cancer cells, if there are any left. But positive thinking and good will has got me this far, and it’s going to get me further yet. Cancer is past tense now, and hopefully it's there to stay.

Welcome home, stem cells!

Day 4 of the stem cell transplant and nothing much to report apart from some severe boredom. My neutrophils have only just hit rock bottom, but so far, so good.

I've been in hospital about 11 days now so you could say I've made myself at home. In typical Beth style, I didn’t realize that I was going into hospital until the actual day. Here I was, thinking I had an extra night free in the real world, when the plan had been to admit me Tuesday night and get things rolling early the next morning. Smart move really, because the nurses probably knew there was no hope in hell I would be getting up early (after four weeks of delicious sleep-ins) and beating peak hour for my 8.30am appointment.

The appointment was to get an ‘arrow’, or central line, inserted in my neck/chest area, which would give them a port through which they could administer the chemo. VAScath, PICC line and now an arrow – as far as lines go, I’ve had them all. And the same young female surgeon, who patients tend to mistake for a nurse, has done them all. We met again, like old friends, this time for the last time. She was very impressed by the results of my last PET scan; she had been quite taken aback by the size of the tumour of my very first scan in London. These kinds of reactions from medical practitioners are all just small reminders along the way that I am basically a walking medical miracle.

So chemotherapy drug no. 1 was a little something called Carmustine. I don’t know if they started with the worst first on purpose, but this drug really hurt. Luckily I slept through half of it because the half I was conscious during was so horrible I wanted to rip the drip out and be done with it. Basically the drug has a high alcohol content, so while it is going in it feels like you are on some kind of horrible bender (without the fun, going out part). For me, my eyes went bloodshot, my mouth and throat burned and I felt nauseated and extremely uncomfortable, to the point that when they offered me morphine, I didn’t say no. After about an hour following, the pain and discomfort subsided. Apparently heavy drinkers usually experience few side effects from the drug, so I guess those several months off the booze have softened me up a bit. :)

The following day was a rest day (though I did not plan on doing much resting!) and I was allowed out all day. 25 degrees, blue skies, a wonderful day in Melbourne. I spent it being a tourist in my own city, enjoying panaromic views of the city from Eureka Tower, going out on ‘The Edge’ – the glass-walled box that pops out and gives you a perspective of the city from all angles, even through the floor. It was a bit underwhelming to be honest, but my cousin’s daughter Jolon loved it so it was worth it.

We survived The Edge!

The day was finished with a light dinner in Federation Square, Swanston Street lit up magically for the comedy fest; the night perfectly balmy and still. A gorgeous night to be out in Melbourne. Pretty hard to go back to hospital after a day/night like that but it had to be done.

The next morning I got to go out for another walk across Collingwood in the glorious sunshine, before being hooked up for my second dose of chemo, the etoposide. This was pretty uneventful really – a couple of large bags, nowhere near as painful as the first day.

The next day was another rest day which I would be spending with a couple of my oldest friends, Fleur and Nicole. I met up with the girls at Southern Cross station before heading across to Edinburgh Gardens for what I had planned to be a small picnic (as it was yet another stunning day in Melbourne). When I arrived at the gardens, I noticed my cousin in-law with his young daughter at the playground. “No way, how uncanny!” I thought as I went over to say hello. Paul said he was at the gardens with my cousin (his wife) Sonya and pointed me towards her group of friends. I looked at the group. “That girl looks just like Jacqui!” I said, recognising the head of white hair among the group. As I got closer, I realised it was Jacqui, and that the people surrounding her were also several family members and friends! My family had organised a surprise picnic for me. Needless to say, this was yet another great day.

Sunday was my last day of chemo (hopefully forever!). I was given cyclophosphamide, a drug I have had before with my original R-CHOP regime, but this time I was getting 15 times the amount. The cyclo can be harmful to the bladder if it is retained in the system, so I had to be given a stack of fluids with the drug. They had to make sure I was peeing it out, so I was given ‘wee juice’ (lasix) several times which kept me going to the toilet. It’s funny how well-acquainted you (and the nurses) become with your bodily functions when you’re sick.

Monday everything was catching up with me. I could feel the drugs washing over my body. I felt dull and flat, and I was starting to realize how long and boring this was going to be.

Tuesday was a momentous day though: the day I got my stem cells back. That morning I was allowed out for a big, healthy breakfast and wandered around East Melbourne, enjoying the beautiful autumn morning; the orange leaves against the brilliant blue sky. When we got back, the little ‘spa bath’ for the stem cells was set up. 23 million of my stem cells, in three bags, were drawn out of a frozen capsule. They resembled frozen salmon. The bags were then dipped into the pool, thawed and hooked up to me via a drip. It’s amazing how simple the whole procedure is, considering it is life-saving technology.

The only side effects I experienced were a funny taste in my mouth from the preservative, which could be remedied by sucking on boiled sweets, and a tickling in the back of the throat. The stem cells have to be administered quite quickly, so before we knew it, the three bags were done. Stem cells, returning to their home, where they would grow and develop new babies – new blood cells.

So four days have passed since then, and now I’m just waiting. For the inevitable … the symptoms to set in – the sickness, discomfort, fatigue, fevers (90% of people on this therapy get an infection). It’s hard to know what to expect because I feel pretty good right now. My main problem right now is boredom and a lack of interest in the hospital food. But it’s early days yet. The lady I am sharing a room with is on day 9 of her transplant, and she is not in very good shape right now. I woke up to her crying this morning; and her day since then has been full of doctors and tests. But every person's journey is different and I'm not going to try to compare my situation to anyone else's. 

On a much more positive note, my amazing sisters and other members of my extended family have decided to participate in The Ride To Conquer Cancer in support of Peter Mac. I can't speak highly enough of the level of care I have received at this hospital - we are so, so lucky to have something like this in Australia. I'm not sure if I'll be up for riding, but I will definitely be taking part in some capacity. You can offer your support here.