written off

I may as well come out and say it straight away; the trial isn’t happening.  One of the side effects of the trial drug is retinal detachment and as I already have a tiny bit of damage to my right eye from where I had a tumour (no longer there, thank you very much radiotherapy) the monitors of the trial ruled me out.

I can’t deny how much of a huge blow this was – and still is – especially coming so soon after five unnecessary days in hospital.  My mum was with me when I received the call and was dumbstruck when I told her; neither of us could quite believe my recent run of bad luck.

I had started to find hope in the prospect of the trial; what if this really kicked the disease into touch?  I was looking forward to my hair growing back and the prospect of having proper eyebrows and lashes for the wedding, but most of all I wanted to give my body a break from chemo, from all of my cells taking a battering in the hope that the cancer would come off worse.

But it wasn’t to be.  The people at the trial centre had informed Professor Hope of the news on the same day, a Friday, and I took some comfort in knowing that he would have time to think of a new plan over the weekend.  Monday came round and Prof Hope did indeed have a plan; I’m now taking a new tablet form of chemo once every two weeks. I could tell he was annoyed for me that the trial wasn’t going ahead, but he reassured me that there are still options out there.

Recently it feels like with each knock the positivity and hope I try so hard to hold onto evaporates. I have started bringing up the prospect of me dying with Tom.  It’s hard not to have these thoughts when I can feel lumps on my chest getting bigger and what started out as a small red mark on my chest has now grown to what looks like a large burn.

I have to look at that every single day, a cruel reminder of the cancer literally eating away at my body and on which no medicine as yet has been able to make a real impact.  Tears prick my eyes as I type this, thinking about how much I love Tom and how unbelievably heartbreaking it would be to lose what we have. I can’t help but think how desperately unfair the whole situation is, but equally how incredibly lucky we are to have ever met at all.

I look at my baby nephew and wonder how many birthdays I will see him reach.  Will he even get the chance to remember me or will I simply become the aunt that died of cancer? I think of my family getting on with life without me; a new dynamic where my brother becomes the youngest.

I know Tom’s not keen on hearing such thoughts but he allows me to discuss them with him.  As a reader I’m sure you want ‘Positive Ellie’ back and believe me I’m still here, but I refuse to deny the thoughts and fears that at times crowd my mind.

On the other end of the scale I’m most certainly not without hope.  Hope for a complete cure? Of course, stranger things have happened.  I wouldn’t be going ahead with treatment unless I believed that there is a chance something will work.  When you’re as full of love for a person as I am it seems unthinkable to give up on yourself.

The good news is that my hair has started to grow back on this new chemo and although I won’t allow myself to get carried away I know there is a possibility that I could have hair for the wedding.  I was at home in North Yorkshire recently and saw that the snowdrops are out; daffodils won’t be long in following.  I can’t help but be cheered up at the prospect of springtime and warmer weather.  It seems an appropriate season to have your hair grow back and maybe it’s time for some more of that hope too. See? I told you the ‘Positive Ellie’ is still in there somewhere.

I’ll warn you in advance that this isn’t going to be the most positive of posts. I have recently come out of hospital after a five-night stay.  The culprit this time?  The port.  It was becoming so painful that I asked the doctors at the research centre to have a look at it for me and they immediately booked me in for an ultrasound and chest X-ray.  The tests revealed that I had a haematoma and a vein was blocked with a clot, so it was back to A&E for the second time in as many months.  By the time the taxi pulled up outside the hospital it was so painful that I was in tears.

I was admitted to the oncology ward and it was decided that the port should be removed. This was not a pleasant experience. I was told it would be under general anaesthetic but when I got to the department for the procedure the surgeon told me it would be local.  This caught me off guard and I started to panic; I tried not to cry but couldn’t help the tears running down my cheeks as the cut was made. I felt so vulnerable laid on that table, wide awake and with my chest exposed. But the anaesthetist held my hand and talked to me while the port was removed, and I was grateful for a comforting voice.

I couldn’t believe my bad luck; I’d never heard of this happening to anyone before. I was just about back on my feet from the previous hospital stay. I’d been feeling stronger and more positive and what happens?  Life deals me another blow, leaving me asking how much of this bullshit can I realistically take.

The port was out but the problems didn’t stop there.  It was decided not to give me any blood thinners on the Friday and to let the area settle down over the weekend, but by Monday I was told I now had clots in my right arm as well.

When I complained to the vascular doctor that I had pains running up the inside of my arm and had restricted movement he said he thought I had a frozen shoulder; the swelling from the clot meant that  I couldn’t turn my neck and this was the result. I would need physio and any thought of me returning to yoga when I got home was quickly dashed. The doctor also informed me I’d probably be on Heprin, a blood thinner, for at least the next six months.  I have to give myself this injection every day.

When I got back to my side room I was told I was being shipped out and moved onto a shared ward, which was probably one of the most traumatic experiences of the whole stay! I know that sounds dramatic but being on a shared hospital ward is like taking part in the most miserable version of Big Brother imaginable. Throw in the fact that you all have a life-threatening illness into the mix and you arrive at ward D for depressing.  A poor woman in her eighties in the bed opposite me was vomiting almost constantly from 12am to 4am and another lady who looked close to death was just a bed away.  Psychologically, hospitals are the absolute worst places to be when you’re unwell.

Tom was amazing as usual and spent as much time with me as possible and my mum travelled down from up north to be by my side when Tom couldn’t be.

I’m back home now and feeling very fragile. Mum and I watched Call the Midwife last night and one of the storylines was of a man whose young wife died in the final weeks of her pregnancy.  They had been so in love and were looking forward to a future together. By the time she passed away near to the end of the episode I was heaving empathetic sobs.

That’s the thing you see, when I get a setback I start thinking negatively. I’m pissed off this happened to me and wish I’d never had the port fitted; I’m worried that the trial will be delayed because I might be deemed not fit enough to take part. I know I’ve been here before I just didn’t think it would be so soon to be feeling like this again.

I was meant to be travelling to see my sister and nephew in Bratislava this week but that had to be cancelled, much like trips to Israel and New York were scrapped when I found out I had brain mets, and of course our New Year’s celebrations were shat on from high above with a case of neutropenic sepsis. I’m not going to apologise for moaning because at the moment I feel like it’s so terribly unfair, but I’m learning life keeps happening no matter what.  There’s no such thing as your fair share of bad luck, so you’ve just got to pick yourself back up and have faith that it will change.

“I thought I had it but no, looks like I’ll have to get the doctor,” said the smiley nurse before trotting off. She’d had two attempts at inserting a needle and of course, with my crap veins, two failures. Track marks and bruises stained my arms making me look like an extra from Trainspotting.

The doctor arrived and another two attempts were made but to no avail. My CT scan was swiftly cancelled. Shit, shit and flying shit, I really needed the scan to see if the Eribulin chemotherapy was working. It was decided to reschedule it for the following week when I was due to have a port fitted into my chest; that way the skilled chemo nurses could cannulate me and we could get both procedures done in one day.

I’ve never been bothered about needles but the last few visits to the hospital have led to pain, discomfort and an increasing sense of dread.  The nurse can’t tell immediately if the needle she has just inserted hasn’t reached its target.  There is a certain amount of manoeuvring; a little turn right, maybe a nudge left, pushing in a bit deeper.  My shy, retiring veins seem to sense when a needle is near, shrinking away just after the nurse’s refrain, “short, sharp scratch,” because they know as I do that it will neither be short, nor just a scratch.

The day before the scan I was worried about the nurses not being able to find a vein and brought this up in my EFT session with Emma. She encouraged me to tap the mantra ‘my veins are strong and robust,’ at every opportunity over the next 24 hours. Remarkably given the recent record, the chemo nurse managed both to put the cannula and take blood from a different vein at the first attempt. Later, when we were told at the CT scanning department that I needed a bigger cannula for the dye to be injected into we returned to the chemo ward and the same nurse managed to cannulate me first time yet again. Something that hadn’t been achieved in about six months!

I’ve had a few scans in the last twenty months and you’re always told the same thing. “You’ll get a strange taste in your mouth and then you might feel like you’ve wet yourself, but don’t worry, it’s just the dye.” No matter how reassuring their bedside manner, there’s nothing relaxing about feeling like you’re pissing yourself whilst laid on a bed with three people watching you from behind a screen.

As I passed slowly through the giant Polo mint-shaped scanner I used the visualisation techniques I’d been taught, imagining the cancer being wiped away by a white handkerchief (I’m aware I sound quite mad) and willing a clean scan.

When I jumped up to leave the radiographer asked, “Is someone with you today?” and immediately I started to worry; I imagined that the scans were bad and that she was checking I had support with me.  This made no sense as I wouldn’t get the results until the following Monday but that’s how my mind works.  From positivity to hideous outcomes in the blink of an eye.

Next stop was the port and by this point I was pleased I was having a general anaesthetic. Finally, a bit of peace. The operation went smoothly and Tom and I were soon in a taxi on the way home. We had a weekend of seeing friends and relaxing ahead of us, and then on Monday we’d see Professor Hope to find out if the Eribulin was working.

I’m not sure why but I don’t get as nervous about results as I used to. Perhaps after all the scans and difficult waiting I’ve used up all my nervous energy; I just don’t get that feeling of my heart taking a dive into my stomach any more.  I think Professor Hope has a lot to do with it too because I know he’ll have a plan that he’ll have thought hard about.

I could tell Tom was nervous but the wait wasn’t long and after welcoming us in Professor Hope thankfully got straight to the point. “The tumours haven’t shrunk but they’ve not progressed either.”

How is it that the option you don’t even consider is often the one that materialises? How do you learn to expect the unexpected? I’d only thought about how I’d feel if they’d gotten smaller or grown; not if they’d stayed the same size. Professor Hope explained that the Eribulin had had an effect, but in his book this wasn’t good enough.  He wanted me to try something different.

A few weeks before Christmas I received an email from a research centre that Professor Hope had put me in touch with the previous summer.  They told me about a trial coming up but specified that to be eligible my cancer had to test positive for a certain receptor, which is only present in 20% of cancers. This is my interpretation of the information so I might be totally wrong but science was never my strong point! In any case I signed the consent form allowing them to test an old tumour sample that must have been hanging around in a fridge somewhere and thought nothing else of it.  A one in five chance did not sound like I’d be going on this trial.

Remarkably, I was wrong. A week before my CT scan I was told that I was eligible. Finally here was an occasion where I fitted into the slim percentage for a good reason! The chance of getting breast cancer in your 20s is about 1 in 2000, and only 20% of women with breast cancer have the triple negative variant that I do. God knows how miniscule the percentage must be of women in their twenties who have a hormone receptive breast cancer that ‘flips’ to triple negative, but I’m sure you get my point.

On this occasion the timing was perfect. The call came just before we were due to decide what plan of action to take if it turned out that the Eribulin hadn’t been working, presenting us with another option.

And so I’m headed for a clinical trial. I went for a meeting yesterday where the doctor explained all the ins and outs in a level of technical detail which I just about understood after he drew a sketch of how the drug works. Brainy Tom seemed to pick it up with just verbal explanation but Thicko At The Back needed a bit of artwork to help her understand just what was going on!

How do I feel? I’m on neither end of the emotional scale. I’m not hugely excited to be on a trial but nor am I devastated by the news that the cancer hasn’t shrunk. I trust Professor Hope to make the right choices for me, and from the couple of times I’ve met them I trust the team at the research centre as well. I’m getting used to the road taking sharp turns and learning to just follow the path that is laid before me.

And the bonus if this stuff works? (I’ll have to call it ‘stuff’ as it’s so new that its name is just a combination of letters and numbers) I may have hair just in time for the wedding.  From a vanity point of view things are looking up!