Letter from the inside: day +10

So it’s day +10 and like every drip of saline, the days are slowly trickling by. My neutrophil count has been zero for about eight days now, and unable to leave the ward, I can certainly feel cabin fever coming on. This treatment is testing my patience to every inch of my being. I am hoping that white blood cells, born from Megan’s stem cells, will pop up in my bloodstream soon. But for now it is just another excruciating waiting game. I should just thank my lucky stars that I am feeling pretty good at this stage, but as the nurses say "you are either sick or bored". I'm bored.

For now, I am working towards three goals:

1.     Get out of hospital (hopefully within the next week)

2.     Get a clear PET scan (in about a month and a half)

3.     Get to day +100 with few problems (90 days from now)

So, from a strictly medical point of view, I’m doing pretty well. I started to feel really under the weather at about day +8, when my throat pain increased and I felt weary and drowsy. That night, of the day Obama won his second term of the American presidency, I spiked a temperature. About 90% of patients undergoing my treatment end up with a temperature, so this was no surprise. Additionally a skin infection has flared up on my right cheek, so at the moment I look rather monstrous. I have been on IV antibiotics for this for several days, and it looks like it is being kept under control.

This is much harder than my autograft, simply because things take longer. I was discharged on day +11 of my autograft, and I will no doubt still be here with a zero neutrophil count on day +11 of my allograft. I haven’t even breathed fresh air for coming on two weeks now. There is every chance I could make it to day +20 without my counts increasing, so I have to be patient.

For now I am feeling OK. My throat pain has waned a little bit and they haven’t had to put me on any IV feeding aids, so I’m kicking goals in that department. I can still manage walks around the ward, and still have quite a bit of energy for someone who’s been through the wringer. Got to be positive signs.

As some of you may have noticed, I have resorted to drawing motivational drawings on the whiteboard to keep me going. The box of letters, a gift from my friends from high school, has also helped me remain positive amid the day-to-day gloom. I’ve committed to reading one a day and the photos and cards have put a smile on my face, as well as brightening up an otherwise drab hospital room. Most of all they have helped me maintain a positive outlook – even the notes and cards from people I’ve had little to do with over the past 13 years (showing my age now) – it means a lot that they wanted to drop in a note to wish me well. I still have a few to go – but thanks everybody who contributed, it was such a thoughtful gift.

Another thing that’s given me a bit of a lift is the completion of Jim Stynes’ book, My Journey. Such an amazing and inspirational story; what a man, to face such adversity with such positivity and courage. There is so much I want to quote from this book, but I’ll save that for another time. I recommend this book to anyone, but especially to those who have had experiences with cancer – there will be so much to relate to, and I think it’s a wonderful thing to know you’re not alone. That’s what Jimmy wanted to achieve by going so public with his journey, and I am thankful.

What else? I won $150 by picking a winner (Green Moon) on the Melbourne Cup, which I watched from the comfort of my hospital room. That and Obama’s win, have given me a boost. These are good omens, they just have to be. 

Allo, stem cell transplant #2 … I’m ready!

From diagnosis to now: what a journey, huh?

So, 10 days until my allogeneic stem cell transplant, and I am as ready as I’ll ever be.

Last week I had an appointment with my oncologist. He was beaming when he called me into his office, ecstatic about my PET results. "For a while there I wasn't sure if I would make it to the transplant," I said, and he replied, "That was a very real concern." The appointment was to discuss these PET results and the next step forward, which was the allogeneic stem cell transplant. This part of my journey would be handled by a team at the Royal Melbourne Hospital, so this would be my last appointment with my oncologist at Peter Mac, hopefully for a very long time, or forever, if the transplant goes well. Part of me was sad about this; as much as I have resented the trips to and fro from Melbourne, the lengthy hospital stays, the constant blood tests, follow-ups, phone calls, Peter Mac has become like a second home and the people in it like an extension of my family. It actually makes me tear up when I think about how, as horrible as my journey has been, there have still been many joyful moments amongst it all, thanks to the support of the staff and the people around me. Having spent time in many other hospitals, overseas and in Australia, I have to say that Peter Mac is really the only place where I haven’t felt like a number. With many of the staff I felt like I was their only patient, to the point that I felt surprise, and a touch of jealousy, when I saw them with other patients. The staff there just have this magical way of making you feel like that. 

I have spent most of this week at what will be my new second home, the Royal Melbourne Hospital. I was quite overwhelmed by how much bigger the place is compared to Peter Mac, to the point that you can feel a little bit small. But the staff are all lovely and I'm sure in no time I will develop a similar fondness for the staff at this hospital. I am still trying to navigate my way around its convoluted maze of corridors, but the place that I will be tied to for the next four months is the fifth floor, which houses the Bone Marrow Transplant and Haematology units. 

My week has been filled with a barrage of pre-transplant tests, to check that my organs are all in working order in the lead-up to the transplant. Over two days, I had a bone density scan, bone marrow biopsy, dental scan and exam, a million blood tests, respiratory tests and also met with a number of people such as social workers, dieticians etc. On the Friday (yesterday), I had a PET scan. Everything came back satisfactory as far as the transplant is concerned, so it will be going ahead on October 22 as planned.

So to give you some idea of exactly what I am in for from this date, here is the rundown:

I will be admitted to hospital on October 22. However, for the first five or six days of treatment, I will not be in the hospital, I will be receiving chemotherapy via 'Hospital in the Home' ('home' being a charity-run apartment 5 minutes from the hospital). On about Day 6 I will receive a more toxic chemotherapy and from then on the Bone Marrow Transplant Unit will be my home for the next three weeks, give or take. 

At the same time this is happening, my sister Megan will be getting daily injections of a drug called GCSF, which will stimulate blood cell production. As a result of this drug, Megan's body will produce an abundance of stem cells, which will spill into her bloodstream. On October 30, they will collect the stem cells from her bloodstream by hooking her up to a giant machine, much like the one I was introduced to at Peter Mac way back when I underwent my autologous stem cell transplant in April. It's pretty cool that Megan is doing this for me, but really, she gets the easy part. And I challenge her to match my 63 million stem cell count I managed earlier this year (though Royal Melbourne’s Bone Marrow Transplant co-ordinator did tell me about someone who managed a collection of 140 million stem cells, which made me feel less special).  

By giving me Megan's stem cells, they are effectively giving me a new immune system. My immune system was unable to get rid of the the cancer, so they are hoping that Megan's just might be able to do the trick and eliminate those tiny little cancer cells that are left. These stem cells are given to me via a drip, much like a blood transfusion. They will be given to me "fresh", that is they will be taken from Megan and given directly to me, they won't be frozen, stored or any of that jazz. 

When they give me Megan's stem cells, my immune system will be suppressed. Otherwise my immune system will start fighting hers, and won’t allow it to take over. Which is where the chemotherapy comes in - this will keep my immune system quiet so that Megan’s immune system comes in fighting, and effectively take over from mine.

After I am given the stem cells, I will spend three weeks in hospital, and that period probably won't be that much different to to the two and a half weeks I spent at Peter Mac for my autograft. The risks of something happening down the track, however, are much more pertinent. For three months I will have to visit the Royal Melbourne three times a week so they can closely monitor me and look out for two main things: graft vs host disease, and infections. 

Graft vs host disease occurs when Megan's immune system (the graft) recognizes the cells in my body (the host) as "foreign" and attacks them. This is exactly what we want to happen with the lymphoma; but GVHD can affect the skin, liver and gastrointestinal tract, causing things like a bad rash, diarrhea, vomiting, etc. Results in the past have shown that having a little bit of GVHD is favourable as usually this also means that the graft is attacking the cancer too, but GVHD can be very severe, to the point that it can cause life-threatening complications. If the GVHD is getting out of hand, I will be treated with steroids (Prednisolone, a drug I know well) which will suppress my immune system and stop it from attacking Megan's. The downside of this, however, is that it leaves me vulnerable to infections and it may also reduce the graft-versus-tumour effect. So you can see how a lot can go wrong here, and there is a fine balance that requires close monitoring and medical expertise. 

The next milestone that I will be working hard to get to is 100 days post-transplant. If I can get there with a) no cancer and b) no major complications from the BMT, my contact with the hospital can be reduced to three-monthly scans. It will be a monumental day, and I will get there. 

So am I scared? I am. But I am more scared of the transplant failing to cure me than of what it is going to do to me. I don't expect it to be a walk in the park, but I am ready for it. I am tired, both physically and psychologically, but I know I can take anything this cancer throws at me now. It's been a long year. I have had 8.5 rounds of chemotherapy, one round of high-dose chemotherapy, an autologous stem cell transplant and now I am heading into an allogeneic stem cell transplant, all within 12 months.

But right now I am so, so thankful that I have a date for my transplant and that is happening quickly. Yesterday I got a call from one of my doctors about my PET results. Now remember that the last PET scan I had was two weeks prior and it had come back clear. Well already, yesterday’s scan showed that the cancer is growing again in the chest area and possibly in the pelvis as well. They are small spots, but they are there. After two weeks. Sometimes I am just blown away by how aggressive this cancer is, and how powerless I am to stop it. But I feel so blessed that there was a cancellation in late October, that allowed me to get a transplant this soon. I just hope and pray that it doesn’t leave any cancer cell unturned, so to speak.

I would be lying if I said I still don't worry about the cancer coming back. Relapsing after the allograft is still a pretty big risk, but without the allograft, the risk of relapse is 100% (well, as shown on the scan, I have effectively already relapsed). As long as there is still even the slimmest chance of a cure, I have to keep fighting.

Love this quote - thanks Glenn

The timing of the allograft means I won’t be able to be involved with the Peter Mac bike ride, which I had signed up for as a crew member. It also means that Megan, as my donor, also won’t be able to partake as a rider. This is really disappointing - I just think it would have been so moving to see all those riders, including members of my family, putting themselves out there to raise money for a cause so close to my heart. But then I think of the cancer cells already dividing and multiplying inside of me … and that’s irony, right? That the one reason my family is taking part in this ride is also the reason I can’t take part.

Anyway, to conclude: today I was sitting on the tram and as it tends to do on long public transport jaunts, my mind got thinking: to how wonderful the last few months has been. I have enjoyed trips away, weekends with friends, laughs, catch-ups with old friends that are just so wonderful in such a unique, warm way because it’s like no time has passed. I want to thank everybody that I have spent time with over the last six to eight months, everyone who has sent me messages, taken the time to meet up with me, put a smile on my face and served as a wonderful distraction and a reminder of how lucky I am to be surrounded by such awesome people. You all know you are. And an extra special thank you to those who have organised and supported recent fundraisers for Peter Mac, it means so much. Despite all the difficulties I have had this year, there have also been plenty of uplifting and genuinely funny moments, and they are the things that keep me sane. 

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.

So it's back to business ...

So I’m back at Peter Mac, and in some ways, it’s like I never left. The scent of the antiseptic hand soap smacks of familiarity, the food is just as dismally unappetising as ever and as if things have gone full circle, I have ended up in the bed (good old 10C, my old friend) in which I began my Peter Mac journey. But while some things don’t seem to change around here, things are still definitely different this time around.

This time I’ve come fresh off a month-long breather. And what have I done with my four weeks off? Oh, not much really … just three awesome road trips (one interstate), a music festival, a wedding, several reunions with old, amazing friends, making new friends, some bad TV - Geordie Shore (don’t judge me), a three-night hotel stay in my own city and a lot of laughing, dancing and much more.

The holiday was slowly savoured from start to finish, like a big meal after a period of fasting. The first bite was a Golden Plains for the ages (see last post) and last but not least, the treat at the end was the equally epic event of Tim and Ange’s wedding (I could say wedding of the year, but that would be unfair on the other two I have attended this year). Packed between these two cataclysmic events, were three road trips: Bendigo, Merimbula and Mornington Peninsula; some visits to some old Melbourne haunts, reunions with many old friends (uni and high school), and a three-night stay in a hotel stay at Albert Park, which was filled with more tuba players than you could poke a conductor’s wand at (every brass player in Australia seemed to be at that hotel – band convention?).

The highlights: Bendigo to visit Sam, which was lots of fun; even the part where Jacqui and I got hit with a tirade of verbal abuse from a carful of ‘bush pigs’ who alluded in less than subtle terms to our presumed preference for the same sex (not true, by the way, boys). We drove loops around Bendigo, raiding the town’s gold mine of vintage and op shops, enjoyed ambient beer gardens at historic hotels, made people watching an Olympic sport at the only bar we could get let into and just enjoying the old-style change of scenery and good company.

Bendigo beer gardens

After Bendigo, I had to go to Peter Mac to get some tests done (pre-transplant  checks including kidney function, dental health, bloods) and get briefed in some more detail by my nursing co-ordinator Trish on what the stem cell transplant would entail. One of the tests required a 24-hour urine collection, which unfortunately meant on my final day in Bendigo, I had to collect all my pee into  the one bottle. This bottle had to come with me to Melbourne, and as I was carrying it as stealthily as I could to the car, Jacqui eyed off my plastic bag and asked, “Is that juice?” Her query was met with disbelief as I had just warned her the day before that my bodily fluids would be accompanying us on the trip home. Luckily the bottle stayed firmly between my feet and there were no embarrassing mishaps. But it was rather funny really.

Coming back to Merimbula was like reuniting with a former lover, minus the awkwardness. And so luckily for us, this reunion was full of sunshine and good times. My sister, her friend Ash and I hit the road, stopping at Lakes Entrance on the way for some fish and chips and unexpected seal spotting. We spent the weekend at the leafy retreat of my aunt and uncle’s Nethercote property, enjoying nibblies on their veranda, guitar sing-alongs, fresh air, games, wonderful home-cooked meals (Caz and Brian can cook!) and jokes. We shopped at Candelo market, buying all sorts of nick nacks and treasures including some ‘so bad that they’re good’ records (including Mrs Mills Non-Stop Honky-Tonk Party –straight to the pool room).

$1.50 - bargain

In Merimbula town, I spent two nights with some of my favourite people, Jasmine and Kelvin and their four gorgeous children who filled my days with laughter. Their children were so full of energy but in such a great way. I am going to sound clucky as hell by saying this, but children are such special people and we can learn so much from them. It was also wonderful to see their little girl Pearl doing so unbelievably well after her own battle with leukemia. Life after cancer isn’t easy either; outsiders tend to overlook the monthly ritual of check-ups, the niggling anxiety that the cancer will return, the inability to use the word ‘cured’, because being cured and being in remission are two different things. But Pearl and her family are doing so well; I hope they all realise how inspiring they all are to me, and how much I enjoyed spending time with them again.

I also got to visit some of my favourite beaches (I may be biased, but to me they are some of the most beautiful beaches in Australia, and the world, particularly because of their ‘untouched’ nature) and even had a couple of swims. The gods were smiling.

I also went to visit my former boss, Liz, who I found out had been trying to contact me by phone since she had heard the news. I surprised her at the office, and when she saw me, her face was filled with enough joy to bring tears to the eyes. She stood up, gave me a hug, and held my hands for a long time. Liz was like a mother to me during my years living in Merimbula, and I knew it meant a lot to her to see me, and to see me doing so well.

Stopover at Lakes on the way home

Another special thing about this time off and well, the time since I have arrived back in Australia, is the reunions I have had with old friends – from university and high school. Highlights include sitting on the veranda with Suzanne and her daughter Lavinia, sipping vegetable soup while watching the rain fall over her Yinnar property (once again opening my eyes to the beauty of my own local area), J-Plo, Fleur and I reverting to our former uni selves terrorising Melbourne, sharing endless laughs with old high school friend Andrew, lunch with Nicole which stretched on for hours because we did more talking than ordering, and all the others I have bumped into along the way – people I have had little to do with over the last 8-10 years, but have wished me all the best. The kindness of all these people I know, after all these years, is truly touching. I hope that I can do the same for others one day, because I now know how special these seemingly small tokens of kindness can be.

On Easter Saturday a group of us did a day trip to Tyabb, where we indulged in some more vintage and op-shopping, a stroll along the beach (where a friend almost got caught in quicksand - quite dramatic), a half-arsed bush walk, oysters and wine at Arthurs Seat overlooking the twinkling lights Peninsula. A drive back through Mornington, then pizza at the hotel in Melbourne. Another fantastic day.

Luckily just before going back into hospital I got to attend Tim and Ange’s wedding, which was so much fun I think I was piling into a cab at 4am. I think the best thing is that Ange and Tim are such wonderful people who are nuts about each other. So glad I got to spend this special day with them. I still have sparkles in my wig from the reception … part of me doesn’t want to brush them out. :)

Another awesome wedding ...

Finally I got that little taste, that wonderful window of what my life used to be. I had strength, freedom, no responsibility and an amazing country to explore and amazing people to visit.

For a while there I was enjoying myself so much that I didn’t want my break to end. With my strength returning in full force, and along with it my hair, eyelashes and eyebrows, it was hard to even believe that another hospital stay loomed ominously in the not too distant future, and “the big one” – the stem cell transplant. I didn’t want to think about it, and I didn’t. I totally lived in the now and loved every minute of it. But as admission day grew closer, I began to grow anxious in a different way: anxious to get it over and done with. I’m as physically and psychologically ready for this as I will ever be. Bring it on; let me hit the final and most excruciating lap of my journey, to collapse at the end, giddy and woozy with victory.

I think the last four weeks will be etched in my memory. When you have cancer, every emotion is amplified; time seems to go slowly; the highs are memorably high. You don’t take anything for granted anymore. Even a simple pleasure such as sitting out in the sunshine and enjoying a meal with some friends is seen as a privilege, not a given, because there were so many times you were too sick to do so. You learn to value things so much more, and I think this quality will be with me for life. I heard footballer Jimmy Stynes (R.I.P) in his documentary talk about how having cancer made you realise what the important things in life were, which to him, was his family. As a result, Jimmy grew closer than he could have imagined to his wife and children, and he was able to showed them exactly how much he loved them. I am a strong believer that everything happens for a reason, and even though I am deeply saddened that we lost someone like Jimmy, I have no doubt he was able to fill those two-and-a-half years from his diagnosis to his death with so much love, a quantity that many would not realise in a much longer life.

Having been in hospital a week now, I am starting to feel the weight of what I am about to face. But I have to put my head down, get this done, and get to my final goal: a cure. Bring on the victory lap.

Stem cells, phantom bugs and flowers

Life really is a fickle thing. One minute you're a seemingly normal, healthy person, with normal, healthy (and not-so-healthy) habits and duties. Decisions like 'Will I be able to make rent this week?' 'What should I wear to this party?' 'Where should I go for my next holiday?' dominate your reasonably carefree existence. How quickly a cancer diagnosis can change all that. Suddenly, your life is taken over by a big, heavy, threatening task that constantly looms ahead, and the hospital is not just a place you drive past every now and then, or hear about on the news. It's your second home. And every move you make, every change in your body is watched, monitored, discussed and documented. Every phone call or catch-up is to ask about your progress. And suddenly things like money, parties and clothes just don't seem to matter anymore.

I am very used to hospitals now. I've done the hospital circuit; I've been admitted to/received treatment at three in the UK and two in Australia. All of this has now brought me to the Peter MacCallum Cancer Centre in Melbourne. I’ve only been a patient with Peter Mac for a couple of weeks now, but already I know most of the nurses by name and familiarised myself with their individual quirks and nuances. I also keep bumping into some familiar faces among the patients, which is nice, though I am yet to meet a patient younger than me.

During my first admission to Peter Mac, I spent four days hooked up to a drip to receive my chemo. After that I got to go home for a few days. Those few days 'reprieve' at home were not particularly pleasant. I had some horrible symptoms that landed me in the emergency room on one occasion, and for the most part I felt helpless, weak, sore and completely flat and unmotivated. The days of painting, writing, editing, sorting through old belongings during my previous chemo were long gone. For someone who considers herself quite driven, this was difficult to deal with. I had no desire to answer my phone on some days. Depression suddenly made a lot more sense to me. 

Thankfully I was able to read though, and I voraciously consumed The Help (thanks Kate!) in a couple of weeks, which was really my own achievement over this time apart from the viewing of a few bad movies on Pay TV. 

On Sunday, about day 9/10 of my chemo, mum and I checked into our apartments next door to Peter Mac. The aim was that I would be close to the hospital so they could monitor me during my neutropenic phase and also carry out daily tests in order to collect my stem cells, which we had been boosting with daily injections of a hormone called GSCF. I was pretty much at my lowest point at this stage; I couldn't do much without feeling light-headed or short of breath. I didn’t even have enough energy to pack. After a restless sleep at the apartments, we were up early for my 8am blood test in Apheresis (the department in which stem cell collection takes place). I was feeling very rough. Just walking to the lift, out the building’s doors, then a few metres down to Peter Mac and back down the lift again, was really hard going. “Do you feel like you’ve been hit by a horse?” one of the Apheresis nurses asked me as I stood, or stooped, at the counter. They managed to find a vein (an arduous task for my arms at the moment), take the blood, then we went back to the apartment, where we would wait for a phone call regarding whether my stem cells would be collected that day or not. I crawled straight back into bed and slept soundly until 11am when Apheresis called me and told me not to bother getting up, because my bloods were too low, which explained my lethargic state.

That afternoon the dreaded happened. I checked my temperature (something I have to do four times a day now) and it was above 38 degrees; which generally means two things 1) an infection and 2) a hospital admission. I had also noticed something that looked like a spider bite or sting on my right knee, was becoming very, very swollen and red, and felt hot to touch. Every part of me wanted to be anywhere but in that hospital, but this was how it had to be. I was admitted at 8.30 that night, by which time, the lump on my knee was about the size of a golf ball.

So I settled in. The man in the bed beside me snored loudly. There's always a snorer - then the snorer gets discharged, and you feel relief, until the man across from you decides it's too quiet and works as a very effective replacement. It’s amazing though, I always manage to sleep reasonably well in hospitals. I don't know if the rhythmic hum of the drip machine and the medical staff and equipment moving around me that lulls me into a sense of sleepy security, but after three nights in hospital I didn't even know my night nurse’s name because I would always snooze right through her shift. 

Tuesday my bloods were still too low for the stem collection to happen, but they still wanted another blood test that day so they could monitor the trend. Getting blood out of me had been like getting blood out of a stone, literally. My veins had pretty much disappeared and most blood tests would require three or four jabs up my arm. Until I was able to be booked in for a port or PICC line, I had to endure the torture of nurses tying the rubber band around my arm until it felt like it was going to fall off, fingers pushing and pushing into my arm to feel for a vein, tentatively sticking in of a needle, sometimes failing to strike, sometimes succeeding. Blood sports!

The results showed my platelets (the blood cells that promote clotting) were low at 17 (normal counts are 150-400), which meant I required a platelet transfusion. A bag of yellow stuff resembling murky runny custard was hooked up to my drip, and viola! I had platelets, thanks to a range of generous donors. I was also given two blood transfusions as my red blood cells were also low (my blood type is B Positive! How fitting). My first blood transfusion, one that made me want to go out and donate blood, though unfortunately, my blood is no good to anyone now.

Wednesday morning heralded another dreaded blood test, but this one yielded good results. My blood counts were finally up, and my CD34 counts (the protein found in stem cells) were through the roof! It was about 350, ‘one of the highest they’d seen’ in Apheresis. “Lucky they were sitting down when I told them,” the nurse said. They were even gobsmacked enough to ask her “Are you sure it’s her blood?”

So Operation Stem Cell Harvest was on. First I had to go down to radiology and get a Vas Cath – a long tube that is surgically inserted into a large vein in my neck. It was a rather uncomfortable procedure carried out with some local anaesthetic, but they did the job, and then I was off to Apheresis, who couldn't wait to dip into my stem cell goldmine.

My Vas Cath. Frankenstein-esque

In Apheresis, I was hooked up to a giant machine via the tubes sticking out of my neck, and my blood was circulated through the machine which extracted the stem cells, then returned the remaining cells to my body. There was only one cup of blood outside my body at one time as I sat there for 2-3 hours as my blood wooshed through the machine and through my body. The machine made a curious sound as it worked away, similar to tap-dancing; what I liked to call the 'Stem Cell Song'. 

While that one collection would've given them the stem cells they needed, they brought me in again Friday morning for another go on the machine just to err on the side of caution. This time around we met a nice man called Aaron, who seemed to know a hell of a lot about stem cells. Aaron took some blood from me and predicted it would show a drop in my stem cell count, but again I caused quite a stir when my CD34 counts came back as 750. Now, that was the highest they'd seen! I don’t know what these high counts mean – I suppose it just indicates that my despite what my body has been through, my bone marrow is very healthy (or that I’m a superhero, as a friend suggested. Personally I like the latter theory better). I took a peek at the bag of stem cells before I returned to the ward, which resembled a Tequila Sunrise, the way they went from red at the bottom to a murky yellow at the top (where the white blood cells and plasma were). Mmm … Stem Cell Sunrise! When the official stem cell counts came back, it turned out they had harvested 67 million – which they figured must be close to a record! (They only need a minimum of 2 millon to go ahead with the transplant). I am a stem cell making machine!

My precious stem cells ... straight to the freezer you go!

Then the good news just kept coming. The doctor gave me the green flag to be discharged on Thursday afternoon. My white blood cells had leaped from 6.7 to 40 overnight; there was some kind of out-of-hand malaky going on in my bone marrow (maybe it was celebrating - hey, the stem cells are out! Let's throw a party!). That night I couldn’t wait to get out into the open air, free of all drips and hospital beds and blood tests and doctor visits, so my mum, sister and I treated ourselves to a delicious Thai feast on Smith Street.

It's amazing how quickly I bounce back, once I'm on the up again. For the next few days I was out and about in Melbourne, feeling very mobile and strong. My mother was stunned at my transformation; I was 100 times better than the Beth that had arrived in Melbourne several days ago. 

Saturday, we drove home and I spent a really nice weekend catching up with my little sister and old friends. Being in a small town, I found myself in the same restaurant two nights in a row; both times served by the same young chatty waiter. However, thanks to some crafty wig-wearing, the first night I'd been a brunette, and the second a blonde. The jury's still out on whether he actually worked out whether I was the same person or not.

By the time Valentine's Day came around, a day I for the most part refuse to acknowledge let alone mark in any way, I was pleasantly surprised by the arrival of a bouquet of white lilies delivered to my front door. As soon as I opened the card and read Matt's name I wanted to cry. Flowers, all the way from the UK. It's amazing how special gestures like this can make you feel. Maybe Valentine's Day isn't so bad after all ... 

On Wednesday, like a yo-yo, I was Melbourne-bound again.  Mum and I had to be up at the crack of dawn if we were to make it to Peter Mac at 8.20am to get my bloods done. Inevitably, we got stuck in traffic and got to the hospital at a time more like 9, and then we had to wait in an excruciatingly long queue before my number was called. Peak hour on all counts.

Then I was off to get my PICC line - a long central catheter inserted into my upper arm, then advanced through to a bigger vein above my heart. The line meant that the nurses would be able to draw blood from it and attach my drip to it without the laborious trials of needle jabbing and lamenting over my woeful veins. It was going to make my life and theirs a lot easier (the charge nurse actually said she would throw herself off the 9^th floor if I didn’t get one – my rebellious veins had become notorious about the ward). Unfortunately, due to several delays, my 9.30am PICC line appointment became a 1.30pm appointment. 

The delays on the PICC line meant I did not have time to get the first instalment of my chemo, the drug Rituximab, because there simply wasn't time. This was very disappointing because it would extend my stay in hospital by a day. But as this whole journey has taught me, things often don't run to plan, and when they veer off course you can't fall apart because in the scheme of things, it's trivial. I've had to miss out on a lot of things recently (giving away tickets to a band I really, really wanted to see a couple of weeks ago because I was feeling so ill broke my heart). But really, what is a missed social event when you’re fighting for your life?

Thursday I was admitted to Peter Mac for my second round of Hyper CVAD (fifth cycle altogether). I was pleasantly surprised to receive a bed with a view. Long windows gaped out to the gorgeous St Patrick’s Cathedral, its dark steeples piercing a brilliant blue sky. But view or no view, these hospital stays were starting to wear a bit thin. Visitors helped, as did my laptop and Nintendo DS, and the odd meander to Fitzroy Gardens (complete with drip machine in tow, attracting all kinds of stares), but the routine was getting old. I know I have to adjust, because hospital time is going to be a part of my life for some time yet, but it doesn't make it any easier. I still hate the dreariness, the long days, the warm sun mocking me from the window, being stuck to a drip and the horrible hospital food that I don’t want to touch. 

The view could be a lot worse ...

This time around was also difficult because on my third day in hospital the nurse came around and told me I had tested positive for a bug called VRE - an antibiotic-resistant bug that lives in your digestive tract and generally doesn’t cause any problems, but if you test positive for it in a hospital, you may as well have the plague. From then on, nurses, doctors, visitors and even the food staff had to wear a gown and gloves every time they came near me. They also moved to my own room, in isolation so I wouldn’t infect anyone. I felt alienated. The only benefit was that I got my own room and some semi-decent sleep. But otherwise, I felt like a leper.

On Sunday morning, based on the results from my blood tests I could be discharged, but because I had to get the Rituximab as an outpatient on Monday morning, I had to stick around. I was disconnected from the drip and was able to go out for the day, but would return that night to sleep at the hospital, then get discharged the next morning. I was keen to get as far away from the place as possible, though I wasn't feeling great ... I was off my food and feeling weak. 

My mum, sister, cousin and I did a trip to Essendon but after sitting outside at a cafe in the heat, I realized I didn’t feel too well, and had to run myself to the toilet to throw up. It wasn't one of my best days. I got back to my dark hospital room that night, feeling really ill and lying on the bed in discomfort, thinking I’d never sleep. The one good bit of news I got on my return was that I didn’t have VRE at all – there had been a mix-up at the lab. Leper stigma lifted! The staff were apologetic for the mistake, but I got two nights in my own room out of it so ... swings and roundabouts.

Strange dreams and mental images dominated my sleep that night; something else I seem to get around day 4/5 of my chemotherapy. When I woke up in that cold, dark room early Monday morning, I couldn't shower and get out of there quick enough. Then it was up to the chemo day unit to get my belated Rituximab, and then finally, home. At times, living at my mum and dad’s property in the bush has felt isolating, especially having come from the hustle and bustle of London, but this time, it was a safe, leafy haven that I was so happy to see. I have also developed an unhealthy attachment to my bed - I don't think I have ever held such affection for a piece of furniture before - too many years of sleeping on rickety hand-me-down beds in share houses. Just to be out of hospital had instantly lifted my spirits ... being admitted to hospital is almost worth it for the pure elation you feel when you're let out. Almost.

Amazingly, the last few days I have been in great shape. I have been going for walks, eating and drinking plenty and apart from some mild fatigue and shortness of breath – a symptom of my slightly low red blood cells - I feel pretty good, which is in stark contrast to my previous cycle. I've now realised that some of the horrible symptoms I experienced then were most likely a result of my intrathecal – a procedure in which chemotherapy is injected into my spine, which is then carried through my spinal fluid to protect my brain. I have a feeling it had been a bad dose during my last cycle, because I'd never had these symptoms before.

Pancakes on Pancake Tuesday make everything all right.

But nothing's ever simple. While I am so happy to be feeling good right now, it's underpinned by a niggling anxiety that maybe the mild symptoms mean the chemo isn't working ... however, it's not worth thinking about until I get my third PET scan in a couple of weeks.

Things are moving along, and the steps are being taken. It feels so good to tick stem cell collection and  my fourth round of chemo off the list. Every round of chemo means one less to go, that's what I keep telling myself. And while my eyes are always on the bigger picture, I also have to be careful not to look too far ahead either - worrying about a scan that is weeks away is in no way healthy. One day at a time.

A change of tack

In spite of the crappy circumstances, there have been some blessings about coming home. I felt I left London too early, but so many moments since my homecoming have left me thinking ‘God I’m glad to be home’.

And the number one reason is family. These are people that you can’t replace, no matter how far across the world you travel. Coming home meant I got to spend a week in Wollongong in a (peach-coloured) houseful of crazy Dortmanses in the lead-up to my cousin Jamie’s wedding. I honestly felt that week and the wedding was something I will remember for a lifetime.

So this wonderful week of reverting to adolescence, waking up to the beach every morning, playing boisterously loud board/card games, rolling around in laughter during charades, having a girls’ day out in Sydney, watching the crazy Dortmans crew leap out of a plane during an impromptu skydiving mission, regular and inappropriate use of the term ‘Code Brown!’ and ridiculous sunburn culminated in the event of the century, Jamie and Ana’s wedding. I teared up a few times, as did the groom ‘I had something in my eye’ Jamie and many others.

Back home, it was straight back to reality as I was again thrown into the well-trodden routine of doctor’s appointments, blood tests and X-rays, closely followed by my third cycle of chemotherapy. The following weekend, I had the honour of attending another wedding, this time to celebrate the marriage of my friend Brooke to her beau Jason. Great day, one that left me feeling similarly warm-hearted and loved up.

At this wedding I happened to meet an inspirational lady named Jan. She came and sat beside me and told me that we had something in common. Neither of us had realized it at the time, but during the chapel ceremony, I had sat right beside her, the only other person in the whole room with a wig on. Jan had breast cancer and was currently undergoing chemotherapy, however, she had been told there was nothing more that the doctors could do, and the cancer would eventually get her. My heart went out to her, but she was handling it like a trooper, living in the moment, saying and doing what she wanted. She grabbed my hand and told me I would live a long and healthy life, she could feel it. “My children say I have a sixth sense about these things,” she said. Jan knew she was closing in on the final chapter of her life but she was full of zest and positive energy.

Don't you love weddings?

My third cycle, compared to the previous two, was a walk in the park. It was almost too easy. I spent a week in Melbourne, seeing it through a whole new set of eyes, feeling like a tourist all over again. Catching a tram was an exciting adventure; catching a glimpse of the MCG on my way in filled me with nostalgia, wheeling my bag through a now-complete Southern Cross Station, visiting pubs and seeing faces I hadn’t seen for two years, spending a sun-filled day at the Aussie Open followed by dumplings at Chinatown and a lemonade in a leafy beer garden, feeling like I had stepped back in time at Labour in Vain on Brunswick Street, attending a backyard barbecue and visiting Edinburgh Gardens for Aussie Day ... but this was the calm before the storm.

Until that day: Wednesday, the day of my PET scan, which would establish exactly how much cancer still remained in my body. I think I was a bit nervous about this; I hadn’t slept properly for the two nights prior but I think this was more to do with the extreme heat of the Melbourne nights and the many sugary, caffeine-laced drinks I had consumed ­– though there could’ve been more going on subconsciously than I thought. Mum, my right-hand woman, drove up from Gippsland to take me to Peter Mac in East Melbourne, where the scan would be taking place.

The last PET scan I had received had been in London, before my diagnosis. I remember that day vividly; it was a real reality check for me, and it was the first day I actually felt the full burden of what I had to achieve. I had seen a scan of my body, and I had seen cancer splashed all over it. Well PET scan No. 2, now taken at the ‘halfway’ mark, after three cycles of chemotherapy, was a similar deal. My optimistic and somewhat complacent view was dashed a little that day, as again I was confronted with the formidable task I was facing.

The process of the PET scan was pretty much the same; I lay on the bed, they injected me with radioactive ‘tracer’, left me for an hour, then I lay down on the bed and was passed through the giant whirring donut. After that I really only had time for a coffee before heading off to the clinic to see the oncologist, a professor who had been following my case closely even before I left London. He had also been advising my oncologist in Gippsland. I was looking forward to meeting him.

The doctor was a gentle, tall and thin man who we soon discovered had a magical way of explaining things clearly and patiently. Mum and I instantly liked him. He sat us down and after getting the mundane details out of the way like my medical history, diagnosis, chemo symptoms and the like, he pulled up a seat in front of us and addressed us very clearly. I could tell almost before he opened his mouth that this was not going to be the best news.

He explained that at this stage of treatment, if my current chemotherapy (R-CHOP) was to achieve a cure, then the PET scan would be clear of all cancer cells. If the PET scan was clear, there was an 80% chance of reaching a cure after the full treatment. If there was still lymphoma showing up on the scan, the chances of a cure decreased to 20%. I fell into the latter category. By comparing both scans on screen, we could see that what had once been a giant, blazing red lump stretching across my chest (the red on the PET scan showing the ‘most active’ cancer cells) was now a much smaller green (green = less active) blob. (Basically, it had gone from the size of a bowling ball to a cricket ball). The chemotherapy had made a significant reduction, but it wasn’t enough.

The oncologist explained to me that if I continued on the current R-CHOP regime, it was very likely that the cancer would grow, and eventually lead to my death, possibly as soon as 12 months. A doctor had never been this direct with me before and I felt like I was stuck in a slow-motion nightmare. After saying this, he paused. I tried to remember to breathe.

 “Are there any other options?” I squeaked.

“Yes there are,” he replied with confidence. He warned me however, that they weren’t going to be easy, but they were going to give me the highest chance of a cure.

The next plan of attack was to move onto a much more intensive chemotherapy called the ‘B cycle’ (Hyper CVAD). Under this regime, all of the symptoms of my current chemo would be increased by 30%, and would also make my white blood cells decrease for longer periods, leaving me at higher risk of infection. After two B Cycles, which go for roughly three weeks each time, I would get another PET scan, and there was a 90% chance that would come up clear. However, the chemotherapy would devastate my body to the point that it would destroy my body’s ability to produce stem cells, which produce the body’s blood. Therefore at the end of treatment, I would get a stem cell transplant.

The stem cell transplant is going to be difficult; it’s a reasonably new, high-risk procedure and the recovery is long (up to a year). They will use my own stem cells, which they will be collecting this week (via a machine that takes my blood, extracts the stem cells, then returns the rest of the blood to my body). These stem cells will then be stored until the end of my chemotherapy treatment, when they will put them back into my body again. For three weeks following the transplant, I will be in hospital, mostly in isolation, while the stem cells grow and develop. It will take 3-6 months until I can lead any kind of semi-normal existence again, and up to a year until I feel 95-100% (though I may never feel 100% again).  

You can imagine how hard this news hit us. I guess for me, it was another massive reality check: this thing is big. When they found it, it was all over my body, around my heart, lungs, stomach, liver, everywhere. And right now we are embroiled in a race: it’s the chemotherapy drugs vs the lymphoma, and the cancer has made it clear that it’s not going to budge easily. This lymphoma might be stubborn, but so am I.

Eyedrops given to me while in hospital - couldn't be more aptly named!

Two days after my scan, I was admitted to Peter Mac (who will be overseeing my treatment from now on), for my first dose of Hyper CVAD. As many of the drugs need to administered over 24 hours, or at strict times, it is not logistically possible for me to receive the chemo as an outpatient, so I am required to spend the first 4 days of chemo in hospital. This is never fun, but it was made slightly more bearable by the fantastic medical and support team there; I feel like I am in safe hands at Peter Mac. Furthermore, it has also driven home the fact that I’m not alone, as I was surrounded by patients going through similar things.

My drip monitor, affectionately known as 'Big Bertha' which I was hooked up to for four days ... was glad to let her go

I’m now a week into chemo and tomorrow I head back to Peter Mac where they will carry out my stem cell collection. This chemo has already proven a lot harder than anything I have previously encountered. A couple of days ago I had constant ringing in my ears, neck and back pain, burning throat, chills, sweats, heavy arms; I couldn’t even get myself out of bed or eat anything. I felt like the drugs were completely consuming my body; that I was fading away underneath them. I feel frustrated that I have no energy and sometimes even simple tasks seem beyond me. But it’s something I have to deal with and I always have to keep the ‘bigger picture’ in my sights. While recent events have brought me back to earth with a resounding thud, the prognosis remains clear: we are working towards a cure. The outlook is as positive as it was, it just means it's going to be a harder road to get there. 

Part 1 (pre-diagnosis): The weekend my life was turned upside down.

The day I took myself to hospital was 11.11.11. When I looked back on that day and date several days later, I suddenly realized that Remembrance Day had happened, and I had spent the whole day in hospital, caught up in my own dramas, not even casting a single thought to the soldiers. But I guess that day will have an additional new meaning for me from now on, because it also marked the beginning of my own personal battle with cancer.

My lymphoma began in my chest, so it was invisible – I couldn’t feel it. In fact, even when I took myself to hospital, I wasn’t presenting with chest pain or breathing problems. I had abdominal pain.

With the beauty of hindsight, I can look back and identify the warning signs, although it’s still unclear if some of them were actually warning signs or not. Bouts of sickness, unexplained fatigue, shortness of breath, night sweats and a persistent cough. Most of these had presented themselves in the five weeks before I went to hospital, but when I thought about it, some had been hanging around for months.

One of those was fatigue. I was coming home from work and not being able to do much more than cook a meal and go to bed. My housemates had noticed a drop in my energy and a change in my moods. I hadn’t been for a run or exercised for several weeks because I hadn’t felt up to it. Even my half-term break was spent feeling sick and exhausted. I thought I must just be generally stressed and exhausted from working, but I knew something was up. One Saturday, I went swimming at the Hackney Pool and could barely complete one lap. I was a bit hungover and tired, but still this didn’t stack up for someone who can swim 30 laps of a 25m pool no problem. Straight after that, the abdominal pain and nausea began, and didn’t go away.

During these two weeks, I saw my GP twice. The first time he prescribed me pills that stopped the production of gastric acid in my stomach. They didn’t really do anything. I was still in a lot of pain and discomfort. And the pain had moved, towards my kidney. It was affecting my sleep. I was still going to work though, because the bills and rent needed to get paid somehow. The second time I went back to the GP, all he did was send off for more pathology tests. “This is a poo-poo container,” he said, holding up an empty vial. (Ew. I feel for whoever had to carry out that lab test.) So basically he took stool and urine samples, and told me results would be back in two weeks. Two weeks! I was in agony. I knew I couldn’t wait that long.

I could see that my GP was pretty much useless. I mean the guy didn’t even try to come near me with a stethoscope. But what can you do?

I went home after that GP appointment and spent the whole day in bed. Usually this kind of rest would make one feel better. Well I didn’t feel any better. I knew something was up. The next day I decided I wasn’t going to sit around and feel horrible anymore. I was going to do something about it. I walked to the bus stop and took the next bus to my closest A&E.

I was dreading a long wait in the waiting room but I got called straight up. I went into my little cubicle, explained my symptoms to the female nurse. They did all the routine checks, then they sent me in for an X-ray. I wasn't sure why at the time and I thought it might be unnecessary. But when they sent me in for a CT scan after that (where you lie down on a bed, get injected with a strange liquid and are passed through a giant whirring donut), I knew something was up. I could see them poring over my X-ray, a big blotch across the screen, speaking in muted tones, stealing concerned glances in my direction.

Finally the nurses came into the cubicle and asked me some questions about my family history. They explained to me that something had come up on my chest X-ray. That there was some kind of mass, gathered around my thyroid, around my breathing apparatus. The male nurse said he was waiting on the CT report to get a better idea of what it was, and that he would be sending down doctors to speak to me about it. I was dumbfounded but I didn’t really know what it all meant. The full seriousness of it hadn’t reached me yet. He asked me a few more questions about symptoms, then I remembered the cough - a horrible sounding whooping cough - I’d had for two weeks, that only presented itself when I was lying down. They seemed concerned about this and scribbled it down on their clipboard.

More waiting. People came to take my blood. I watched as a nurse took about four or five vials, the dark scarlet liquid leaking across the plastic ominously. A young female doctor, who didn’t really have any news, but was nice company, and did a few more checks. A manky hospital sandwich for lunch. And more waiting.

I’d been in A&E for about six or more hours when the bombshell came, via a lady named Sarah from haematology. She was accompanied by several doctors and consultants. I wondered if they thought I was going to flip out. They were all looking at me with concerned faces. They asked me if I had family around. I said no, they were all in Australia. And I couldn’t even call them because it was stupid o’clock (3 or 4am) over there. All my London friends were at work. Sarah was very direct with me. She said the symptoms I was describing, and the scans and test results were all pointing to one very likely diagnosis: lymphoma. This meant nothing to me at first, until she said, ‘Hodgkin’s disease’ and suddenly Delta Goodrem, and cancer, sprung to mind. “Lymphoma is malignant, but it’s very treatable,” she assured me. She told me they wouldn't know what it is until a biopsy was done, which wouldn't be happening until at least Monday. I didn’t really know what to say but sit there quietly, crying. Not sure who to call, what to do. “It’s a lot to take in,” she said gently. I had never wanted to speak to my mother more than I had at that moment. They told me I would be staying in the hospital for the weekend and when I told her I was supposed to be working Monday, Sarah said gently, “I can assure you that won’t be happening.” (No, instead I would be in an operating theatre.)

So I called my boyfriend Matt, who I was supposed to be meeting up with that night. His reaction was shock and disbelief, his voice wracked with concern. “Can I come see you?”

I had been moved to a ward by the time Matt came. I was so happy to him walk in the door, even though his eyes were full of worry. It was a lot to take in, but it was quite difficult to talk things over while the woman in the corner kept moaning and retching violently into a bucket. At 8.15pm one of the nurses came over and told us visiting hours were over at 8pm. I didn’t want Matt to go. He hesitated for a long while. “I don’t want to leave you here on your own,” he said. “I’ll be OK,” I said. “I know,” he replied. “Tough as old boots.” (Apparently on his way out, the lady in the corner asked Matt if he could take off her socks. “I don’t care who takes them off,” she said, staring at him wildly. Matt called for a nurse and high-tailed it out of there.)

It was about this time I called my mother. It was about 9.30am over there and she was at work. I went to tell her, but I choked on the words and began to cry. Concern crept into her voice. “What’s happened?” I told her I was in hospital, and that a scan had shown something in my chest, and when I mentioned the likely lymphoma diagnosis, her voice fell. “Oh Beth.” She then, as I knew she would, insisted on flying over. I told her to wait. “Just wait until the diagnosis.” Because she was at work and still recovering from the shock of what I told her, we resolved to discuss it further tomorrow. Then the nurses told me I was changing wards, and I gathered my things, and was wheeled, like a frail person, to the upper floor.

It wasn’t exactly the most welcoming of surrounds. At first I had been grateful to get away from Lady ‘take my socks off’ Spewguts, but when I accustomed myself to my two new neighbours, old Spewguts didn’t seem so bad. On my left side was a woman who I at first thought had a case of severe flatulence, however, the culprit was actually the ventilation machine she was using for oxygen. Directly across from me was a middle-aged Romanian woman, who was rocking back and forth, moaning softly as if possessed, her chin poised ominously above a vomit container. She was deathly pale. Next to her bed, a monitor was beeping loudly, and at every break between her beeps, a beep came from the opposite corner. So between these two other patients, there was constant beeping, deafening machine-powered flatulence and moaning, as I lay there, tossing and turning, trying to get comfortable in spite of the sharp pain in my side. On top of that I’d missed dinner and was majorly hungry – the best the nurse could do for me was a couple of pieces of toast with a tiny sachet of jam. Then the doctors insisted that my bed stayed upright all night because they were concerned about my cough.

Needless to say, I only slept three hours. The next morning my phone went flat, and I started to worry, as it was my only portal to my friends and family. Luckily I'd written down a few numbers, and I asked one of the nurses, Sister, if I could use the hospital phone to call my friends, so I could arrange for them to bring my belongings, including my phone charger, to the hospital. She wasn't crazy about the idea and told me to be quick, because they needed to use the phone. The phone calls I made kept cutting out, and after several calls Sister yelled at me because I was taking too long. She really upset me, and after some tears and heated words were exchanged, thankfully a male patient from a neighbouring ward intervened and offered me his phone charger.

Thankfully my phone was charging when my family called - Mum, Dad, Sam and Megan, via Skype. It was so good to hear their voices. I gave them updates on my situation, and mum said: “You’ve made up my mind, Beth, I’m coming over.” She said she had already checked flights and there was one leaving Sunday night. Everything was happening so quickly.

Matt managed to bring my belongings to me that day, after rummaging around in my room (let this be a lesson - always keep your room tidy in case you end up in hospital) and another friend Nick came to visit as well. It was a nice time, sitting around laughing and chatting. The nurses even let Matt stay past visiting hours.

On Sunday morning, after a better sleep, I could see a small patch of blue sky through the hospital window, peeking above the bland concrete garden and wall. I asked the nurses if I could go outside for a moment to get some fresh air, and they allowed it. It was a short walk to the lift which took me downstairs, to the doors to a garden. I realized as I walked out the automatic doors to the outside world that I was very tired and short of breath. For once it actually hit me: I am ill. A brief walk shouldn't make me feel like this.

At about 3 or 4 in the afternoon the nurses announced I would be moving to the National Heart Hospital in Central London. This is where I would undergo a biopsy, where they would enter through my chest and take a sample of tissue from my tumour, which would be taken to the lab for testing. The other two patients watched me as I got my belongings together, and part of me felt sad about leaving them, they'd become my friends in their odd little way. But I was off to the Heart Hospital, onto the next phase of my journey.