Fighting The C Word

10/07/2019

Hello old friend,

 I have come back to the blog for a simple purpose: to explain how the hell to get through a stem cell transplant and out the other side, weak as hell but with a smile on your face. But I want to also get it all down so that in years to come I can look back and remember how much I went through to get to where I am today.

Sadly, I have heard of more and more people getting ready to go through what I’ve just finished so here’s the deal, I’ll write it all down here cos it’s a lot of information for you to take in right now and now you can come back to this whenever you need some guidance…

On 16th November last year (yes the day before my 26 birthday and even more ironically, the day before my ‘post-chemo and birthday’ party, I found out in my 1 month control PET scan that I still had active lymphoma cells. A few spots showed up in my chest, and one in my abdomen. I knew, just knew, walking into that room that it was going to be bad news, but I didn’t know quite how bad the future looked in terms of the treatment plan.

“So Dizzy,” Dr. C begins with that pitying look in his eye, “something showed up in your scan…”

Gut punch.

“We will have to do a biopsy to make sure it is what we think it is, and unfortunately this won’t be as simple as it was last time, as it is in your chest this would involve an open chest surgery. However, luckily (!!) as there is also a little spot in your abdomen that we can biopsy this using a CT scanner to guide us going in from your lower back.”

Yep, lucky me!

I mean, yeah I guess it is lucky considering the alternative invasive surgery, but really nothing about this situation felt at all lucky.

“And once it is all confirmed we will start you on a new chemotherapy regime called GEM-P, a second line treatment for relapsed Hodgkin Lymphoma. This is designed to get you into a full metabolic response (no active cancer cells showing up on the PET scan I had to have after each cycle) so that we can harvest your stem cells ready for the… (and here’s the kicker) STEM CELL TRANSPLANT! This means at least a 3 week stint in hospital with dire neutropenia resulting from a week of high dose chemotherapy.”

Yep. I know, happy birthday to me.

Though this gal knows how to strap a smile on her face and forget her troubles for a night so the party went ahead and was perhaps made all the better with the essential need for everyone there to party like it was 2017 before any of us had heard of Hodgkin bloody Lymphoma.

A miserable two weeks followed waiting for the biopsy, and during which I was nursing the mother of all lost voices, seriously, it didn’t start coming back for 10 days.

Admitted for the biopsy, and because this was more of a surgical procedure it meant much more observation, starving myself, waiting around and tears compared to my quick and easy attack of the neck from last time.

I told the surgeon, I want to feel nothing, I want to be completely oblivious to what you are doing (after the biopsy in my neck for which I was told I wouldn’t feel a thing turned out to be the biggest of lies I ever did hear). So there I was, wheeled into the CT scanner room, told to lie face down baring all, while not 1, not 2, not 3, but 15, count 15 doctors, surgeons, nurses, scan operators, medical assistants, and the next door neighbours’ dog walker were gathering around. I can perfectly imagine now how Ross from FRIENDS must have felt when he had doctor after doctor called in to try and diagnose the odd spot he had on his butt.

But pretty soon I was pumped full of all sorts of lovely drugs and really wouldn’t have blinked twice if Boris bloody Johnson had come to join the fray. 

So that was that, just had to wait for the results (another painfully long 10 days) and really what for? We all knew what it was and these weeks of delay just felt unnecessary when I knew the beast was back, or had never really left in the first place.

But 10 days passed and it was confirmed, it was lymphoma and I would be starting the second line treatment imminently, but had to have another PET scan as a control before starting. Really I am so radioactive at this point I’m expecting a role in the next Marvel franchise.

GEM-P second line treatment: 

Day 1: Gemcitabine infusion (1/2 hour)

Day 8: Gemcitabine infusion (1/2 hour)

Day 15: Gemcitabine and Cisplatin infusions (overnight stay in hospital)

Days 1 and 8 really went without any issues. I started with day 1 on December 20th, so had gone from a great birthday present to an even better Christmas one… But as the infusion was only half an hour and side effects were so negligible for me compared to the horrors of the last 6 months of chemo it really was manageable. However 5 days of taking steroids in the form of TEN pills per day (which tasted truly terrible) took its toll on my sleep tempered by that fantastic effect chemo seems to have on me of making my skin so delightfully soft, supple and blemish free.

Day 15 was a different matter. This involved an overnight stay in hospital because the 4 hour infusion was so hard on the kidneys it had to be surrounded by an eight hour bag of saline both before and after to flush it out of me. Also because of its harshness on the kidneys, the day before my admittance I had to have a kidney and liver function test… Well that would have been all well and good but remember the time of year we’re talking… just after a Christmas and New Year… in Scotland. So on 3rd January when I was admitted for the long dose infusion, the doctor did come in saying:

“Dizzy your liver and kidneys did seem to be working rather overtime judging my the result of your test, but I think we’ll just put that down to an overindulgent Christmas season shall we?”

The overnight stay was my first, and generally was fine. I was expecting little sleep, interrupted every few hours by a nurse prodding me for blood pressure and heart rate monitoring. Because of the amount of liquids they were putting through me, I was up peeing every half an hour (not even a slight exaggeration) and also having to measure how much, I know, so dignified, but I promised to tell the truth in all its gory detail. It all passed pretty much without a hiccough, except for one nurse coming in with a fresh infusion bag for me, about to hang it up and attach it to my port line when she looked at it again and said: “Whoops! This isn’t for you!”

I mean….!

Morning came, feeling a bit rough, but nothing too unmanageable, I knew I’d be home soon. After about 4 litres of liquids pumped through me over the course of 12 hours, I was bloated and puffy as hell, tired, nauseous and all round not great, but I was discharged and sent on my way. Here followed the sickest I have felt since starting chemo. Anti-nausea drugs were different to what I had had before and clearly weren’t doing enough of what they were designed to do. I was never actually sick, but had to lie in a supine position lest the nausea surface and couldn’t face eating anything. This continued for a couple of days but by the end of the weekend I was feeling much better.

After the day 15 means a week off during which was another PET scan to see how progress was doing. And guess what… this was my first ever CLEAR SCAN! The Gem-P was doing its job and I was showing a full metabolic response! I thought this might mean that I could finish this chemo after only one cycle but sadly I was wrong, it had to be 2 cycles at the very least.

So onto cycle 2, which was all in all was pretty similar to the first cycle. Hot flashes from the Zolodex injections were the worst side effect meaning I woke up constantly in the night boiling hot, leaving me exhausted and headachy during the day. After the next overnight in hospital I got them to adjust my anti-nausea medication so it was back on the constipating but wonderful Ondansetron which worked miracles and I felt, well, far from fine, but much better than after the first cycle.

So after the second cycle was another PET scan where it was confirmed I was still in a full metabolic response and could therefore finish this second line control chemotherapy and prepare for the stem cell harvest!

THE HARVEST

I had some weeks to wait before this could all get started as they wanted to give my body a bit of time to recover before blasting it again, I know right, so considerate.

But don’t go thinking this means you can go off on a nice holiday, oh no no. As it turns out, before a stem cell transplant, you need to have almost every organ in your body tested to make sure it’s in tiptop condition. So every other day I was in a different hospital across London having my lungs, heart, kidneys, liver, brain and blood tested (thankfully liver and kidneys were showing a much more normal function this time around!). I also had a constant stream of appointments with the ‘haem team’ as I had been turfed from my old oncologist to the specialist Haematology team who takes care of the transplant.

Now, I’m as fond of my old oncologist as much as you can be of any guy who gives you terrible news every time you see him, but my new haematology consultant, that’s a different matter. I knew we were going to get on swimmingly when at our first meeting he told me that really the only thing I can now do to prepare for the transplant is to put on as much weight as possible because I would be expected to lose quite a bit of weight in hospital so I should be in a place where I could stand to lose a few kilos. So there we have it, a medically prescribed pig out every day!

All in all it was not exactly a relaxing few weeks but in a masochistic way it was exciting as it really felt like the moment was fast approaching where I’d be admitted for the all powerful transplant for which I’d been waiting for so long.

Four days prior to the harvest I start the GCSF injections, which boost your bone marrow production into overdrive. These are self administered at exactly the same time everyday. A normal person will have no stem cells in their blood as they exist only in the marrow. With these injections, bone marrow is stimulated so much that stem cells are forced into the blood stream. (This is my very dumbed down science but I think is more or less correct). Luckily I reacted very well to these injections with little to no pain, but I hear some horror stories of people needing liquid morphine just to be able to sleep through the pain of hyper stimulated bone marrow.

Collection day arrive and we jetted down to the Sutton branch of the Marsden. Blood was taken to check that the injections had been doing their thing. I needed a minimum stem cell count of 15 to be able to go ahead with the collection. I had… get ready for this…

Are you ready…?

137!!!

They said it was a record the likes of which they had never seen before. Now self confidence is not something I typically lack, but has nonetheless taken a bit of a beating this year, however my bone marrow, I am bloody proud of. Ok it may have been the reason for me getting this blood cancer in the first place but its done a hell of a job at keeping me away from neutropenia through the last 11 months and has really pulled through when I needed it to.

Good job bones. You’ll definitely be getting an acknowledgement in my memoirs.

…Oh the things we find to brag about when all else is going to shit.

So now that all was in order with the counts it was time for the needles… and what I make up for in bone marrow, I lack in vein size. I needed a needle in each arm, a cannula in the right arm which was fine as this is a small needle, however the placement was such that my right arm was totally incapacitated. The left arm needed a needle the size of a chopstick in a very specific place. After three different nurses trying for 45 minutes (to great agony on my part) they finally had to call the big boss nurse, who had been promoted years before to well beyond the point of administered a needle, to use an ultrasound to find a vein big enough. Eventually we were there, arm numb by this point. My left arm had to be kept locked straight for the entire duration of the 5 hours for the harvest. Don’t know if anyone has ever tried this (don’t see why you would have) but it is agonising.

How the harvest works though is fascinating:

The chopstick in my left arm draws blood out, sends it into a centrifuge which spins the blood around so fast that it separates. Red blood cells, the heaviest, to the bottom, plasma, the lightest, to the top, and stem cells float around in the middle. The machine then siphons off the middle layer and stores them and sends the rest of the blood back to my body via the right arm cannula. At any one time only 200ml of blood is missing from my body so you never feel lightheaded at all and over the course of the 5 hours, all the blood in my circulation has gone through the machine twice.

WOW! Modern medicine is phenomenal. You can take your raw food diet and CBD oil and go do one.

The end of the day, two body contents of blood, two bags of harvested stem cells, two completely dead arms and one season of Big Little Lies later, we are done. I am released from both needles, unhooked from the centrifuge and finally allowed to go for a pee. And we're off!

The bags of my stem cells go to be checked over for quality control and frozen for the future date.

THE TRANSPLANT

Another PET scan and the incarceration date for the transplant was set. Time moves differently for a transplant; days of the week are no longer Monday, Tuesday, Wednesday, dates are no longer ordinal according to month. You are in a vacuum so in a vacuum your time will be. Days move thusly (and now things are going to get technical):

Day -6: pentamidine nebuliser, lomustine pills, dexamethasone steroid

Day -5 to day -2: dexamethasone steroid, etoposide infusion, cytarabine bolus (every 12 hours)

Day -1: melphalan infusion, 3 hours fluids to flush

Day 0: TRANSPLANT (4 hour fluids with potassium, stem cell infusion, another 4 hour fluid bag)

Day 1: and so on and so forth

Simple right?

Roughly translated this means high dose chemotherapy for 5 days followed by another day of an ultra high dose of the horrible stuff to completely blast every cell in my body and bring my blood count down to a flat ZERO, then day 0 when my harvested stem cells are thawed and given back to me, and then just waiting for the blood count first to fall, then to start rising.

Waiting, waiting, waiting for the stem cells in my blood to find their way back into my bone marrow and take hold again. This takes about 10 days from day 0 (first day of my new life).

Generally this first week I felt fine, I even escaped from hospital every day though after the first two nights when I managed to wangle sleeping at home, the told me I’d risk giving up my bed if I did that again so after my day’s furlough I’d have to come back in for the night.

Day of the transplant was rather an anti-climax. Months and months of preparation had led to this moment and it was just half an hour of defrosting and two IV bags of stem cells. Though what they don’t tell you is that the preservative used in which the frozen stem cells are kept gives off the delightful aroma of tinned sweet corn, which stays with you for days, forewarning everyone to your presence, as they can smell you coming down the corridor before they can see you.

So there we have it, I had my new cells, my new life, and now it was just a waiting game until they took hold. I didn’t start feeling terrible until the evening of day 1 (i.e. the day after my transplant) just when I was getting ready to come back into hospital for the night, suddenly I could barely stand up, was nauseous and weak and I knew that when I went in that night I wouldn’t be leaving again for a few weeks. So I kissed goodbye to the fresh air and turned my back on the outside.

The days progressed steadily worse for a few days, sore tummy, sore mouth, couldn’t stand, cramps and nausea. The high dose chemo from day -1 causes mucositis, which can affect the whole digestive tract. Luckily I only had it in my mouth and throat which are probably the least offensive places to be affected by it but it did mean swallowing the 1000s of pills I was on every day was a lot more difficult and eating, nigh on impossible, exacerbated by the fact that I couldn’t sit up without wanting to be sick. So the weight that I had tried to put on came off pretty rapidly, the nurses measuring me day and night freaked out and wouldn’t really listen to me saying that I’m actually just back to my normal weight now and that the doctor had told me to pad out a bit. I had a nutritionist sent to see me, and was prescribed protein shakes, nutritional supplement drinks, the works.

By day 4, my blood count was finally at 0 and I was officially in extreme neutropenia. No raw food, very cautious of visitors, air controlled room and extreme levels of hygiene were essential. My temperature, which had been hovering in low-grade (above 37.5 but below 38) finally spiked at 38 and the nurses went into overdrive getting me on the antibiotics then sending me for a chest X-ray. All this was to be expected. Even though I was in a vacuumed and air pressured room and anyone who came in had to wash their hands, wear gloves and an apron (although only to the discernment of the nurses who seemed to judge the friends who came in on how grubby they appeared and to what extent they needed to be covered up) the majority of infections come from within our own bodies.

But by day 5, I was feeling remarkably better, I still had a sore throat but the cramps had stopped and I could eat a bit more easily. Things really kept getting better from there. Bloods were still at 0, temperatures were still spiking, antibiotics were still flowing, potassium supplements were needed, a plasma infusion was given, more GCSF injections were administered, but these were all expected. I stopped being assigned the most senior nurses on the ward and started having the more junior ones, which was a big help psychologically.

By day 8, blood count had moved up to 0.1 which was worthy of a party in and of itself. However sadly, with the blood counts beginning to improve comes the other inevitable side effect. The hair started going. My hair, which I had managed to hold onto, despite all the odds, the whole way through 11 months of chemo finally couldn’t take the melphalan infusion. I had been told there was no chance I’d be able to keep my hair so I was prepared mentally but it was still horrible. When it began malting pretty heavily a friend had told me that, awful as it is, you have to keep brushing it otherwise it just matts and you’d have to cut it off. So morning and night I was brushing away, throwing away handfuls of hair until day 11 when it was too matted to brush, I knew it was time to shave it off.

The blood counts had been steadily improving, I had come off the antibiotics and potassium in preparation to be discharged and finally on day 12 I was allowed HOME!

And that was that! 19 days in hospital (from -6 to 12), which was less than the 3 to 4 weeks they predicted. Overall I think I got through the transplant about as easily as it is possible to do so. My blood count recovered quickly as anything and the side effects of the chemo I truly was expecting to be so much worse.

All in all, it was the furthest thing from easy, I was weaker than I thought I could ever be, walking to the bathroom exhausted me, I couldn’t read, I could barely focus on watching TV, I almost fainted standing up to have my blood pressure taken, I could eat only a little bit at a time, a 10 minute conversation tired me out completely, I didn’t sleep for longer than a two hour stretch in the three week period, I discovered that sit down showers are the bomb, every muscle seized up, and I lost more than 30% of my muscle mass

BUT I did it, and I’m out the other side and putting the pieces of my broken self back together again.

It’s going to be a long road till I’m back to where I was before any of this started last year, if that’s even the me I want to get back to, but I’ll get there, or to wherever I need to be, cos I’m one strong fucking human.

** This is by no means an exhaustive explanation of a stem cell transplant, of what it is, what it means to go through it, and all that happened along the way, this is just my experience. No two cancers are the same and no two experiences are alike. But if my writing about my experience helps another person about to go through the mill with it, or someone being a primary carer for another going through it, then it was worth it.

My advice: all that I have just written covers the period from 16th November 2018 to 7th April 2019. That feels like a pretty long stretch, but think of it in stages - stage one, getting through the GEM-P chemotherapy, stage two, getting through the harvest, stage three, getting through the transplant. Of course stage three is the hardest and saved till last but by the time you get to it, that’s it, it’s only three weeks and then you’re outta there, hopefully for good. When you are in for the long incarceration, go from one stage at a time to one day at a time and it becomes much more manageable. Being confined to a hospital bed when you feel rough is fine because you don’t want to move much further than that anyway. It starts getting harder when you are feeling better and start bouncing off the walls again. But by then you know it’s nearly over and can take comfort in that.

16/11/2018

What to do when you know the worst is not, in fact, over?

This is not a manual telling you the answer, I am asking, pleading you to tell me?

When I have spent the last month since finishing chemo almost back to my normal self, laughing, whizzing off on holidays, optimistically planning my future…

and now CRASH BANG WHALLOP back to reality as my scans yesterday reveal that all is not as rosy as it seems. That my body, in fact, is reticent to eject the alien it has been harbouring.

The eve of my 26th birthday was supposed to be filled with excitement and joy and now it’s filled with doubt over whether this may be my last. Why can’t I be like all those other 25 year olds who get cancer, fight it off and away it stays? Or better yet, why can’t I be like all those other 25 year olds whose biggest problem is an unreturned Hinge message. Why does my body have to be so accommodating to the evil that lurks within it? Why does God want me to die?

I am now cast back to the girl I was 7 months ago, who was having to undergo innumerable tests, scans, biopsies, and the endless waiting and waiting and waiting for results. Over the last 6 months when I have thought back to that girl my heart would break again at the pain she was in yet here I am in it again.

Only now, is it worse? I have been to hell and back but it wasn’t enough to keep the devil at bay. What more do I have to give? My future is in jeopardy, again.

Why me?

I can’t do this all again, it took everything from me the first time. How can I find the strength?

26 should have been the year I get to move on and put this all behind me, now its prospect is murky and its finale is pending.

So what to do when you know the worst is not yet over? Don’t ask me, I have no fucking idea.

16/10/2018

The first day after the last treatment, the day I have been dreaming about since the beginning of April… should this feel like the first day of the rest of my life, where I can start anew, knowing now what is truly important to me? Well if that’s what I’m supposed to feel, I must be more broken than I thought.

Don’t get me wrong, I’m over the moon, or at least I’m sure I will be once I’m not feeling quite so rotten and exhausted after treatment yesterday and this sinks in a bit. But I sure was dancing around yesterday, feeling the adrenaline again for one last push. Tears of relief, tears of laughter and tears of happiness overwhelmed me.

I don’t know what will happen now. There is a fear of the scans to come in the next weeks and months that does cast a cloud of this deliriously happy week. Fear of the future, of reoccurrence, that this might not reeeally be the end. I have scarcely let myself voice these fears, only to my fellow fighter, but it gives me a sense of testing fate by celebrating too soon.

But screw that! I should let myself celebrate and be enormously proud of this huge milestone I’ve reached. Whatever will happen will happen and I’ll face it with all the resilience and courage that I can muster. But its important to celebrate all the same and so I’ll try to put all fears out of my head until I know whether there is actually something about which to be fearful.

Let me take a moment in which I can dish out some well earned thank yous to various people who’ve been there for me along this ‘journey’ (for want of a better word). There are a hundred more people who deserve thank yous and they will come in due course, but to begin with:

My mother dearest, my rock. You never cried, or at least never let me see you cry. I know watching your baby go through this must have been a thousand times harder than me actually going through it myself. I know you would have taken the burden for me in an instant if it meant I didn’t have to and that it killed you that you couldn't. I’m sorry for being crabby and demanding in all my most princessy, youngest child ways. I’m sorry that you’ve had to put up with me living at home for a year longer than you had expected (and I’m sorry that the dog now loves me more ;) ). Thank you for bringing me my smoothie in bed every morning, for waiting on me hand and foot in the days after treatment. For being my chauffeur and indulging me in treats and all the holidays we have planned. For cooking me roast chicken dinner every other Monday. For rallying the troops to make 1000 origami cranes just to feel like there is any tangible thing we can do to bring this unlucky 25 year old just a modicum of good luck. For praying for me night and day. For putting up with hoards of smothering friends coming around daily at my bequest as I constantly need surrounding. For being at every doctor’s appointment, scan and treatment, all the while not letting your fear and sadness that your father was dying from the same diabolical disease across the ocean show lest I begin too to fear the same outcome. For your stoicism, even if I haven’t always loved it, it has given me the strength I needed to get through this.

Gail, Boo, Foo, Fot, Tilly, my recuperation team. Thank you for our Monday nights chicken dinners, for allowing me a soupçon more attention than a youngest child deserves, if only just a soupçon. For coming to treatments and playing endless games of Linkee with me. Fotty and Abby thank you for letting me invade your house numerous times and hosting so many parties for me. Tilly, my therapy dog, thank you for being the only person (?) who has enjoyed the fact that I’ve been bed ridden and therefore a perfect lap to sleep on all summer, and never giving me a moment’s peace, though I think I could have managed the shower alone…

‘Arielle’, my go-to. You have been there, unwittingly or not, in truly the bleakest moments. The absolute worst three days in the last 7 months you have been by my side. You haven’t hidden your emotions from me or let me cry silently and alone but cried right along with me in solidarity.

‘Vikrum’, thank you for meeting me the week before I started chemo and pretending that you didn’t know about it until I wanted to bring it up in my own time. Thank you for letting me have one last week of normality and not talking about the C word. Thank you for being a light in this bleakness and putting up with my mood swings and dictatorial requests. Thank you for pretending to enjoy watching endless hours of Love Island, Strictly Come Dancing, Jane the Virgin and Sex and the City. Thank you for staying up talking to me until 3am on steroid frenzied nights before leaving to get a couple hours sleep before work just so I don't feel alone.

‘Anchov’, my constant. Thank you for texting me a FRIENDS or Harry Potter quiz every single day and never teasing me for getting almost every single one correct. Thank you for sending presents before every single treatment and never letting the on-goings of your own life distract you from me. Thank you also for sending your mum and Doug the Pug to me in an hour of need, I don’t know how you did it, but I know it was you! You’ve truly been an extraordinary friend throughout all of this. But I hope you realise that these quizzes don't stop just because treatment has stopped. You’re stuck with me for a lifetime.

The team at the Royal Marsden, how lucky I am to live within walking hospital of the best cancer hospital in the world. Thank you for making me better.

To everyone who came to a treatment with me: Ma x11, Boo x2, Foo x2, Abadoo x2, Camelia x2, Harriet x2, Vee, KK, Hannah, Rom, Jessie, Lucy, Mungo, Allegra, Viktor. I know it’s not the nicest way to spend a Monday, particularly for those who took a ‘holiday’ so to be there, but it means the world to me, as do you.

Lastly, but most importantly, Allegra, my partner in crime. I truly mean it when I say that I could NEVER have done this without you. Thank you for spotting me in the Marsden all those months ago, not ignoring it, but finding out what was wrong and calling me. Thank you for making me feel like I wasn’t alone for the first time, after the darkest weekend post-diagnosis. Thank you for buying me a drink and telling me that, ‘yeah it’s shit, but you’ll get through it and actually have a pretty normal life’. Thank you for buying me a pre-chemo tool kit with all your tricks of the trade for how to get through. Thank you for passing on all your research on how to manage chemo so I didn't have to enter the Google black hole even once. Thank you for always know how I feel before I say it, because you’re feeling it too. Thank you for making me laugh on the treatment days we shared and I really cannot believe that after all this, we finished treatment two days apart. If that isn’t fate I don't know what is.

There are so many more people that I could thank and will but I’ll end here lest this begin to sound like the acknowledgements at the end of the book that is my life.

Even after these 7 months (1 month of agonising waiting for a diagnosis, 1 month of pre-treatment preparation, 5 months of gruelling treatment), if I know anything it’s that I have never felt stronger, never braver, never more resilient and never more loved.

Cancer you can take a whole lot away from me but you will never take that.

16/9/2018

Let’s talk the psychology of a cancer fighter-

I cannot pretend to have any wisdom on the subject. I don’t know why since the half way mark it has got so much harder to make myself go in every other Monday. It has got so much harder to sit in that chair, feel the poison pumping around my veins and know that the queasy discomfort and exhaustion I am feeling will stay with me the rest of the week. I don’t know why my fighter playlist, which once made me feel so strong, now makes me cry. I don't know why my tear ducts, which have generally been underused over the last 25 years, are now triggered so easily.

I don’t know why in what is now the final month of treatments this feels more like a marathon than the last 100m.

Maybe it’s the September feeling. Everyone is back to work, back to school, back to their own lives after a long summer break. And I am neither back to life nor have I had my summer break. Everyone is moving on and I am stuck in a bi-weekly vortex of misery that is seemingly never ending.

“Wow I can’t believe you only have a month left! This has gone so quickly!”

It is incredible what some people say.

There is nothing about these months that has flown by, rather it has been the slowest sloth of a summer.

Has the adrenaline run out?

Has the emotional fatigue overcome me?

I have no answers.

The weaker I feel, the more pressure I am under to put on a happy fighting face, for myself as much as for everyone else. The harder it is to keep on dancing, keep on smiling, keep on facing this with humour and grace.

I can no longer pretend that I am fine because I am not.

And yet chemo has become the devil I know. What is beginning to haunt me more is the next hurdle.

How do I begin to put my life back together? 

How do I move on from this?

How will these scars heal?

What kind of PTSD might I face?

And just at the moment when everyone would expect me to be over the moon and jumping for joy, the psychological trauma of what I’ve been through will hit me like a tonne of bricks and having to pick myself up again will destroy me.

My most recent thought is that these tears that keep coming are overwhelming feelings of pride in myself. I am finding it harder to hide the impact this is having on me and the emotional strain I am under.

But I am bloody proud of myself for what I am going through and how well I am coping in general.

No one can carry this burden for me or with me. This is not a case of a problem shared is a problem halved. No amount of talking about it or writing about it will ever be sufficient in explaining to people what this feels like and how difficult it is. No level of empathy will convey what my life has been over the last 7 months.

But I know what it has taken and continues to take for me to get out of bed every other Monday, pack my bag and head into that room. I know how far I have come, how far there still is to go, and the strength that I need.

In the words of Stephanie Bennett-Henry

“Life is tough, my darling, but so are you.”

Here’s to the last month of treatment, after which my recovery truly begins.

23/7/18

Dear Chemo…

You have taken away my vitality, my energy, my radiance, everything that makes me me. You have replaced that with lethargy, despondency, nausea, and melancholia.

You tear me down each time I pick myself back up. You weaken me just as I’m beginning to feel strong again. You destroy my joie de vivre with your poison.

How can you be so archaic to only work by annihilating all the cells in my body, good and bad?

How can it be that someone hasn't figured out a way to manage your side effects?

Why can’t you fix me without having to torture me first?

How can it be that I didn’t feel ill until I met you, my ‘medicine’?

Whilst making me better you systematically destroy my intestines, my immune system, my stomach, my brain, my veins, my blood, my follicles, my nails, my appetite, my energy, my ability to be vertical. You threaten my heart, my lungs, my ovaries, my livelihood, my positivity, my drive.

How can it be that in order to heal me you must simultaneously tear me down piece by piece?

You have made me retreat into myself such that, at times, only a shadow of my former self remains. Who is this girl who cancels plans at last minute, who stays in bed 70% of the day, who turns down food, who struggles to find the energy to laugh?

All these things that I see as quintessential to me being me, you are depriving me of.

I hate the taboo that surrounds you. I hate that people are surprised at how good I am still looking.

I hate the look some people give me and the change in tone of voice, with a tilt of the head and sad doe eyes like I’m on my deathbed.

I hate that my diary is so busy right now as though people are worried they have a finite amount of time left to see me so must get it all in now. Let me assure you everyone, you have a lifetime with me, you won’t be rid of me that easily.

I hate that I dread that I feel every other Monday when you once again make me a walking vessel of your toxicity.

I hate that I feel sick when I think of you, when I walk past the Marsden. I hate the smell of the waiting room, the feel of the chairs, the labyrinthine corridors, the face of cancer surrounding me.

You were my worst-case scenario. Death never was. It was you. And now I am facing you. There are no words to describe the pain you cause me physically, emotionally, psychologically.

You are an isolator.

You are a torturer.

You are a manipulator.

You are the world’s worst weeklong hangover.

Having said all this, chemo, you are making me better, you are working so for that I must thank you. But I will never forgive you for the way you are going about it.

I had always heard the horror stories of what you were like, how you show your might over cancer by being stronger, a bigger bully and destroying cells more quickly than even cancer can.

The horror stories don’t do you justice.

You are a magnificent barbarian.

You are a brutal healer.

The very worst of the best such that even cancer loosens its grip over me to run from you.

Why do you have to put we who are already going through the worst of times, through such an uphill struggle against you, our very benefactor?

Why does it have to be such a battle? Why does it have to be so hard?

Now cancer, this one’s for you:

Why me?

Was I the easy target? Did you think she doesn’t have children or a job that really needs her? She’s not that special, no one will miss her that much if she’s gone.

What on earth did I do that you chose me as one of your victims?

I hate that I will survive you whilst so many won’t, including those so close to me.

Chemo, above all, screw you...

But thank you.

4/7/18

Imagine the incredibly deflating feeling of psyching yourself up for a mid-point scan which will show whether the treatment is working or whether it is time to switch to a different regimen. You fast for 6 hours beforehand, prepare yourself, mentally, physically and emotionally for this first big test only to then to be told, once you’ve waited for 45 minutes, that the PET scanner has broken down with zero prospect of getting it back up and running again today.

Then imagine this happening twice.

Today was meant to be the day of my second dose of radioactivity (children under 5 and pregnant women beware) but once again, the car park PET scan had different designs.

The scan after the second cycle is to show whether the cells are reacting to the ABVD regime well (i.e. is my body now working with me to try and kill the fucker or is it still harbouring the criminal?)

It is at this point that the doctor will decide whether to change onto a different cocktail, which would have a more toxic effect on various things, but notably my fertility… because it seems it is not enough that cancer has to threaten my life, it has to threaten my legacy too.

Yes, it is a good sign that my neck is now without protrusions, but that does not take all anxiety away by any means, and I wish people would stop telling me that ‘I’m sure it will all be fine because your lump has gone!’. The lump beforehand was just the latest flourishing of a much deeper problem going on hidden inside my body, so really we have no bloody idea what is going on inside, and conjecture and evidence-lacking hope don't help. 

I would be quietly hopeful but every hope I had during the pre-diagnosis time was totally squashed so I am cautious to hope and reticent to be confident.

Apparently this is wittily dubbed ‘scanxiety’.

Yet the world spins madly on and another sleepless night means another scan as I await my fate tomorrow…

10/6/18

This week has been hard.

I tried to do my first (non-cancer specific) yoga class and couldn’t complete it. This has been the first tangible indication to myself that I am not well and am physically weak. It made me feel ashamed for not being able to go into ‘warrior one’ as though my inner warrior had deserted me. I felt shaky, nauseous and debilitated. I knew, and was prepared for, feeling this way in the immediate days after a treatment, but this was 9 days after my last treatment, I should be feeling fit as a proverbial fiddle by now, or that’s what I had been telling myself.

Since starting treatment four weeks ago things have been good, as far as having cancer goes. I have three days of feeling drained emotionally and physically but then I bounce back to ebullience and life continues as normal. I’ve been making plans every night, been to two festivals, been on a plane (defying doctor’s orders), and danced all night at a spectacular wedding, feeling like I have a point to prove that whilst I may have cancer, cancer sure as hell doesn’t have me. I felt like I had to defy all expectations of a cancer patient and be beautiful, lively, healthy (seeming) and happy.

This has been what has kept me sane over these weeks, reassured that I can carry out a relatively normal existence bar three days every two weeks when I have full reign to lie in bed till noon, be brought breakfast in bed, watch as much TV as I want and generally act like a princess.

And this is why, I think, failing at a physical activity has had such a blow to my mental willpower so much that I almost cried whilst micro-scooting home. I was forced to acknowledge my sickness and the fact that I am not operating at 100% and that, actually, I am not ok.

*

Onto the treatment itself- it all began one Monday morning, full of nervous butterflies, like the first day of school, albeit a toxic and tortuous school. My mother and I arrived to the Royal Marsden with not much of an idea as to what to expect.

Chemotherapy days are long and arduous. It is not a quick: in, injection, out, Bob’s your uncle, Fanny’s your aunt.

Rather, it is: in, wait, blood test, wait (2 hours), height, weight, wait, doctor, wait, shown to seat, wait in seat, search for vein to insert cannula (20 mins), insert cannula, pre-meds, flush, anti-nausea meds, flush, steroids, flush, first toxic drug (30 mins), flush, second toxic drug (30 mins), flush, third toxic drug (30 mins), flush, final toxic drug (1 hour and 30 mins), flush, removal of cannula, receive take home medication, out.

The whole process on the first day took about 7 hours.

At each stage I am asked to say my name and date of birth lest someone else’s toxic cocktail be accidentally pumped into my, apparently dreadful, veins.

Now, no one tells you that chemo is painful. Or perhaps it is just me and my weak veins. The cannula position is crucial- not on the back of the hand which is too sensitive, nor in the crook of the arm which is near too many important nerves, no no, this cannula must go on the back of the wrist right by the sticky-out bone ensuring zero hand or arm movement at all.

And the pain, oh the pain. Like cold knives shooting down my arm. They bring me a heat blanket which helps a bit, they lace the poison with saline which helps a bit, they slow down the poison which helps a bit. But the pain resides and lingers in the arm and just now, 29 days later, is subsiding.

BUT there is a solution, fear not! Modern medicine is quite amazing. A port! Despite being warned off it by my doctor and nurse for reasons that are beyond me, the chemo nurses say it takes all the pain away and even makes treatment faster because poison can be pumped straight into the chest muuuch more quickly than poison into a mere extremity.

So I am scheduled in for a consultation with the ‘port’ doctor:

In.

Doctor: “do you understand what a port is?”

Me: “not really, but I hear it means chemo won’t be painful”

Doctor: “yep”

Me: “great”

Doctor: “ok we can get you in for the surgery on Thursday”

Me: “great”

Out.

Enter Cromwell Hospital, a hotel for the infirmed.

Big bed, TV with Netflix, private ensuite with little shampoo bottles, turndown service, room service, massage service, concierge service. Sadly I was only in for the better part of a day.

Also sadly, despite having all the amenities needed to be a 5* hotel, the staff certainly didn’t have the air of hospitality that one might receive at the Ritz.

Whilst being wheeled into the pre-surgery room, the anaesthetist, Professor Calculus hair and glasses to boot, greets me and whilst searching my arms for my ever-elusive veins, attempts some small talk. Now, an anaesthetist’s role, as well as being the last face you see before you welcome oblivion and keeping you in blissful said-oblivion for the duration of your slicing and dicing, is to make you feel calm and reassured. Here, I have to say, Professor Calculus failed dismally.

Doc: *whilst prodding and poking me with a needle* “so what do you do for a job?”

Me: *wincing in pain* “oh I’m working for a start-up restaurant”

Doc: “oh dear! That’s a dreadful industry to work in. Don’t you know that 95% of restaurants close down within a year?!”

Me: “Err, umm, well this is not your average restaurant”

Doc: [derisive tone] “Well I hope you’ve got some business acumen!”

Nurse: *quickly interceding on my behalf* [loudly] I’M SURE SHE’LL BE FINE DOCTOR!

Doc: *finally inserting the needle into my arm* “Aaaanndd count down from 10”

Me: *thinks to self* “fuck you Calculus”, *says outloud* “10…9…8………”

And what do you know, the next treatment, port in arm (or chest in this case), is painless and quick. No lingering arm pain, no stabbing knives, just seamless, speedy cyanide that only took 3 and a half hours to be administered not 5.

*

When I think back to that girl who, just 7 weeks ago, was told she had stage four cancer my heart is ripped open again and I cry thinking of how alone, completely terrified and inconsolably devastated she was. She couldn’t imagine how she would ever be happy and normal again.

What a change 7 weeks makes.

I may be more physically damaged now, feeling unwell for the first time since this whole mess started, but I have never felt stronger, braver and more sure of anything in my life than I am about my ability to give cancer an almighty flying head-butt and move on with my life when this is all over with an overwhelming sense of my own power to overcome anything I put my mind to.

I can still have days where I rarely see the sunlight, I still have days where I feel like no one can really be there for me, leaving me totally alone, and yes, I still have stage four cancer, BUT my mind-set has changed from cancer patient to cancer attacker, from victim to fighter.

In the words of one of the greats:

Makes me that much stronger,

Makes me work a little bit harder,

Makes me that much wiser,

So thanks for making me a fighter.

-       Christina Aguilera, Fighter

Thank you cancer, you’ve taught me that I am much, much stronger than you.

13/5/2018

Let me preface this by saying that I am in full awareness that I am one of the lucky ones. I have an incredibly fortunate life, a great family and wonderful friends. I now even have the ‘best type of cancer’ because despite being at stage four, they can talk about cures with full confidence. I am also unbelievably lucky that I live a 10-minute drive from a world-leading cancer hospital with the best care and treatment possible.

I am lucky, I know. BUT…

I am writing this in a moment of retrospection of the last month which consisted of agonising waiting, relentless and frightening scans, emotionally scarring appointments, an incredibly painful procedure and topped off with general terror at what still lies ahead. This is, of course, interspersed with my rise to stardom and a bountiful supply of texts, cards, flowers and presents. 

The last three weeks has been a mess of fertility injections and scans every other day, the intimate details of which I will keep away from public eyes. Now it is the night before the first chemo treatment, the nerves are beginning to kick in and this I will channel into writing.

The last month has also been a complete mess of emotional turmoil.

The first 36 hours after my diagnosis I sunk into the deepest depression I could have ever imagined, being a positive and happy person in general.

The world fell out from under me, I could barely finish a sentence without crying, I felt completely and utterly alone despite never being physically alone for more than about the length of the average pee. I watched three seasons of Orange is the New Black in as many sleepless nights. My life suddenly seemed entirely devoid of hope as I was now facing to all too real diagnosis that I had been dreading for the last month.

All I could think was: how could the world be so unfair as to take away my father at 18 and my life at 25. And: how could this monstrous disease having been wreaking havoc in my body to such a stage 4 degree without me realising. If I hadn't happened to feel that inconsequential lump that fine March evening would this have been the year that I die?

I was flooded with supportive messages from friends about how ‘I am not alone’ and how ‘we will be here every step of the way’ and I was filled with both great love and reassurance and simultaneous frustration and anger because all I could think was ‘if you can go a day, an hour, or even a minute without thinking about this then I am alone because that is completely impossible for me’ or ‘unless you are going to be going into hospital every other week to have a cocktail of poison routinely pumped into your veins then you can never truly be with me in this’. And even, ‘unless you are having to cancel every holiday you have already booked and paid for over the next six months, give up sushi and rare/raw meat, avoid the tube at rush hour, deal with nausea, fatigue and everything else that comes along as a side effect of chemo then I am alone’.

These thoughts have ebbed to a degree because of the amazing support that has been proven to me by many of my friends and by meeting someone (you know who you are) also going through this who has, literally, proved to me that I am not alone.

I can take solace in one thing though:

Interaction with fertility doctor during a scan:

Dr: *whilst ‘popsicle-ing’ me* (for want of a more descriptive word): “Well I must say, you have a remarkably beautiful womb”

Me: Gee thanks doc.

So there’s that.

However prolific we all know cancer to be, however many statistics we hear thrown around about 1 in 3 people get cancer, where are these people? I don’t care if your mother’s second cousin’s dog’s hairdresser had cancer at 60 (although I am very sorry for that person), show me another 25 year old putting their life on hold to go through the emotional and physical battle against the C word. And, lucky me again, I have found one who has taught me, in her words, that “when cancer knocks you down, calmly get back up again and say: ‘you hit like a bitch’”.

Now that the wait is over and my future progeny is, somewhat, secured, it’s time to show cancer what I’m made of as the battle for my body begins.

29th April 2018

So here goes…

Last month, approx. 25th March, whilst doing my Sunday evening ablutions, I came across a lump on my neck. Not painful, not particularly big, but still definitely a lump that in the weeks before hadn’t existed. I didn't think a huge amount of it but someone told me to check it out so I bustled off the NHS medical centre, thinking that I would surely be laughed out of the room for overreacting and wasting their precious time.

This was the first time the C word was mentioned. Beat. The tears started coming as I walked home and have barely ceased since. In the past I have not been a big crier about anything, big or small, apart from John Lewis adverts and any other such on screen gratuitous over display of emotion. In the last month I have cried a proverbial ocean.

Two days later I was sent on referral to the Royal Marsden, the leading cancer hospital in the world (second time the C word was mentioned) but still I thought to myself that there are a thousand things this could be - the C word being just the very worst. The doctor brusquely prodded at my neck whilst telling me that I was pretty overeager to already be seeing him, having only found the lump two days before. He said the next step was an ultrasound and biopsy before he could even venture a guess at the diagnosis. But of course I couldn’t be seen again for another 2 and a half weeks so I spent a cheerless Easter putting on a cheerful smile and going about seeking Easter eggs in a cheery way whilst all I could think was, surely, surely, surely this can’t be the C word.

The weeks passed and I began to step back a bit, the tears subsided and I laughed at myself thinking ‘of course it isn’t bloody cancer! People get lumps ALLLL the time and it’s always nothing, of course this is just nothing.’ And life continued as normal in full confidence that I was totally fine.

The night before the ultrasound, whilst I was in a busy post-work rush at a pub in Victoria I was called by the Royal Marsden to tell me that they had booked me in for a Saturday morning MRI scan a few days later. Sucker-punch. Right in the stomach. All my positivity about this mysterious lump vanished out the window and I was again faced with my own mortality.

Panic resumes.

‘But isn’t it great that they are being thorough and just want to make ABSOLUTELY sure that it is nothing?’ No - FYI that is not a particularly comforting thing to say.

Ultrasound, where I am told that I actually have a few more small lumps on the other side of my neck, and an extremely painful biopsy where I am injected with a huge needle through the neck whilst some other instrument removes pieces of my body via deep incision next to my windpipe, and then the doctor runs out the room whilst I am changing afterwards to go consult the first doctor. He comes back in to tell me that he has booked me in for an immediate CT scan.

Panic increases.

CT scan, pumped full of ‘contrast’ – a warm, seemingly inky substance that is nauseating beyond belief. ‘Ok great, thank you! Wait out in the waiting room for twenty minutes just to make sure you don’t faint. If you faint then come get someone, if not then you’re free to go!’

Right.

The next day, Friday, the Dr. rings me to tell me that he has provisionally scheduled me in for an operation to remove the lump the following Thursday. ‘Don’t worry, it will just be a local anaesthetic and you’ll be done in just 20 minutes’. Don’t worry?! The local anaesthetic needle (just from the biopsy) has had me in agony for the last 24 hours and now you’re telling me that you’re gonna cut out the whole fucking thing?!

Panic really escalating, but at least TGIF.

MRI two days later, armed with mother and sister and friend. They call me through from the waiting room, and I am taken to a separate waiting room, leaving the others behind, with only a Bazaar magazine from August 2006 for company. I then have to wait there with the dulcet tones of the MRI machines blasting in my ears for 45 minutes, like some form of psychological torture gradually breaking me down. The scan itself can only be described as what I assume being in a straight jacket in a coffin must feel like. Barricaded in, head locked into a cage, arms and legs strapped down, with earplugs and then head phones over the top playing all the chart toppers of the moment, the bed is wheeled backwards into the tube whereupon the bizarre symphony of bangs and beeps and zaps and zings begin and do not cease for 40 minutes. But then its over and the weekend can finally begin.

My immensely strong positive thinking has still got me convinced that everything will be fine so the next days pass as normal.

Wednesday morning, Dr. ‘you-were-overeager-to-come-in’ calls me to tell me:

Dr: ‘So, we no longer will be carrying out the lumpectomy tomorrow because we are fairly confident we have reached a diagnosis without it. It’s looking like Hodgkin Lymphoma’

Me: *say to myself* ‘Oh well at least it’s not cancer!’

Dr: ‘That’s a form of cancer’

Me: *say to myself* ‘Fuck.’

He asks me to come in right away so we can talk. My sister and Ettie Baby come with me and we are taken straight in to talk to the man who merely two weeks before had classified my a hypochondriac. He tells me it’s the best type of cancer to get, he tells me it can be treated by just some pills and injections over a couple of months, he tells me that I’m in for a couple of rough months but then I will bounce back.

He repeats the diagnosis to me just as Ettie, who has been pacified with a sealed Frube, squeezes a little too hard and the strawberry yoghurt squirts all over the room, right at me, in my hair and all over my face and clothes. Double whammy blow.

I walk out of there thinking, ‘ah well, it’s not the best news cos it's not nothing, but at least I don’t have to have chemo! That would truly be the worst case scenario, this is more like the best of the worst case scenarios.’ And really for the first time in several weeks I feel pretty happy and relieved because finally I know what it is and I know how to beat it and I know, for sure, that it will all be fine.

Friday morning I am booked in to go see the Hodgkin’s specialist. After 15 minutes of perfunctory small talk about my family’s ages, genders, order, careers, marital statuses, medical history, drinking habits, sexual preferences, haircuts, and fashion senses, Dr. C puts down his pen and paper, looks me in the eye and says, ‘OK. So it is Hodgkin Lymphoma, your CT scan showed that the biggest tumours are around your windpipe, they have also spread into your lungs and below your diaphragm into your stomach. This would mean that it is classified as stage 4. We would like to begin chemo as soon as possible but we do need to talk to you about freezing your eggs because there is a possibility that a back-up drug we may have to use will cause infertility.’

And with that, just when all is seemingly manageable again, the world delivers another knock out sucker punch right in the neck, windpipe, lungs and stomach.

This takes us up to 10 days ago. This last month has been a proverbial and clichéd whirlwind of emotions including:

Fear

Anger

Resentment

Deep, deep depression

Suicidal thoughts

Loneliness

Panic

Positivity

Negativity

Relief

Panic

…which I think is rollercoaster enough for now but rest assured, the thought and fear of dying has not actually been one of the 27,000 emotions that I have felt over the last month. More so I feel just an overwhelming need to show cancer what I am made of and that I can do anything I put my mind to and that there is absolutely no way that I am going to let cancer boss me around. I am not being brave because I am brave, I am being brave because I have no other choice, no one else can fight this for me, I am in it alone and have to beat this on my own. Hodgkin, whoever he and his lymphoma is, have picked a fight with the wrong girl!