Now, every time I witness a strong person, I want to know: What darkness did your conquer in your story? Mountains do not rise without earthquakes
~ Katherine Mackenett
Tuesday, 19th December 2017
The day that the darkness began. This was the day that I first heard the word cancer. That I saw the look on the doctors face and I first asked if I was going to die. The day I phoned my mum and sobbed down the phone to her “What if I am dying Mum?”. This was the day in my history that will forever be written as the one that the C-bomb exploded on, casualties still unknown. Like a nuclear device it took no time poisoning my family and my friends. It was also day my guilt began, that I had brought this hideous disease into my family. But, the most heartbreaking memory I hold of that day is deciding that I would leave my husband and children if it was terminal to give them a clean break without me, to try to save them from watching me die.
Thursday, 25th January 2018
This was one of the darkest days of my life. The day I underwent my radical hysterectomy and became infertile. My mother-in-law drove me to the hospital that day and I had to make myself climb out of the car. I remember standing staring at the building and wondering if I would survive what was to come. The sterile environment of going into surgery did nothing to calm my anxiety and fear, neither did my surgeon. The loss I experienced that day I was completely unable to process, and I still can’t process it now. That day my dream for a third child became impossible. I did it for my girls, because I would literally do anything for them and I would do it 1000 times over. We all thought that it would beat my cancer. But it didn’t.
Some of the exact dates have fallen out of my head, but this was the month I sent the fateful e-mail into my Gynaelogical Cancer Clinical Nurse Specialist complaining of pains, I was brought in early for another colposcopy and the gynaecologist reassured me that she didn’t think I was experiencing a recurrence of cancer, but sent me for an MRI to be sure. When I returned on the 22nd of the month the CNS was present, she entered the room before us and when I saw her I just knew. I turned to Tom “It’s back” I barely managed to get the words out, “You don’t know that” he said. It was. I remember the clinic letter to my GP detailed mine and my husbands response as “extremely distressed” as if we were abnormal.
June & July 2018
This one doesn’t get specific dates either because they have disappeared into the ether. Though both of the appointments that I had that month have engrained themselves into my brain so well I can replay them upon will as perfectly as the day the happened. In full on technicolour. This is the month I discovered my outlook was a poor, this is the month I was told my disease had spread and therefore, was “life shortening”. I had become a palliative patient. Five more years. In the space of 10 minutes I had gone from early form stage 1b1 cervical cancer to stage 4 incurable cancer of the cervix. This is the month I was first admitted as an inpatient for pain, that I had the uretic stent put in and I was hurriedly readied for Palliative chemotherapy; though, I do not believe anyone can ready you for chemotherapy. Sometimes it’s not even what it does to your body, but the places you go mentally are like a courtship with the darkest side of you that you never knew existed. I only made it one round before we had to stop.
At my post chemotherapy appointment I was told I could no longer have treatment due to the recto-vaginal fistula and that the fastest route back to treatment was to have a colostomy, I think that my consultant and CNS were shocked that I gave consent for that surgery there and then. No colostomy meant certain death and that was never an option for me.
Thursday, 9th August 2018
The day I had my colostomy surgery so that I could continue with treatment. This was the first positive success in my journey, learning the tumour was not as caught up with the bowel as we had initially feared. I had to begin the adaption of having a bag, of no longer having control over when or where you go. Of having bags leak, or even overflow and having to change bags in public bathrooms. It was all new territory, but I never really viewed it with fear because it was the fastest route back to treatment.
Friday, 14th September
I started my chemotherapy again, six sessions in a row to give me the best shot would leave me totalling seven rounds of the stuff. We fell into the loop of three weekly chemo sessions. I had a PICC line put in to make the whole thing easier. The chemo brought with it pain flares and I would sit through them mentally repeating to myself over and over and over again that it wasn’t really me it was hurting, it was the chemo killing the cancer. We managed my flares at home successfully and otherwise seemed to not be doing too horrifically, that is until my second to last round right before Christmas.
One morning I awoke and I couldn’t feel my legs properly, they hurt but seemed numb at the same time. When I stood I couldn’t bend my knees but managed to make it downstairs for a bowl of cheerios. I got considerably worse. It was the day we were all supposed to go to the local Christmas pantomime and now Tom and I would be staying home. The next 36 hours I don’t recall. It was spend with doctors and nurses coming in as often as possible, often two hourly, to give me more and more morphine, or to sedate me as the pain took over. During that period I was so ravaged with pain I asked my husband to kill me. I didn’t want to die, but I wanted it to stop. I managed to make it through Christmas but went into the Hospice shortly after who looked after me through my final round of chemotherapy. I was given the option to skip the last one, but how could I? What if we didn’t get the scan results we needed and I knew I’d turned down more chemo. I had another immune reaction to the final round too. The chemo has left me with fried nerves in my feet that still hurt and are controlled with neuropathic pain killers.
Since then I have fought battles with urology to remove a stent that was causing me agony on top of my usual pain, battled sepsis and been in and out for pain and symptom management. Since then we have discovered I am in remission, that the chemo worked. But here’s the thing this is the short version of the last 20 or so months. And it’s still going on, I am still in abject pain daily. I have nerve pain we can’t control fully. We have the fallout.
Staff now tell me I have long term prospects which is amazing, but it also means medical staff taking a step back because in their words “it’s time to get back to being Ellie”.
The thing is, when the cancer came we went to war. I went full out to war, war paint on for my life, for my kids, for my family. Wars have casualties and the cancer is the casualty of this war in the physical sense, but, to be perfectly frank, there is little glory won in war. There are scars physically, but there are mental ones too. Now things have slowed down everything that has happened is starting to hit me all in one go. Twenty months of war and now I’m walking through the war zone, fires are still blazing, dust in the air from wreckages and the worst part is that I’m doing so with no clue which broken bit of me to try and fix first. It’s an impossible choice
I’ve lost myself. I remember waking up after my colostomy in a ward full of women who played cancer top trumps “Well, they’ve said I’ve got six weeks left” ventured one, to be countered by “they say anymore chemo would kill me” and I remember being terrified I would lose myself to the disease like they so clearly had. But, I don’t think I succeeded in my goal because I don’t know who Ellie is anymore, let alone how to get back to her. Being in a war changes you, you do things you never thought you would ever have to do, you make choices that you never want to make.
So what is this time? Is this a chance to make myself someone new or is it a chance to put back together what their was and hope for the best? I’m never going to be the same as I was, I can’t be. I want to be me, I miss myself but I don’t know how to anymore.
But honestly the hardest part of all of this is grieving the loss of my fertility, my future family, the one I had dreamed of having since I was a little girl playing mummies and daddies, knowing that for me that was it. I knew what I wanted to be: a Mummy. I wanted a family of my own. I wanted three, maybe four kids, the big people carrier and a Georgian house with a climbing rose growing all over the facade somewhere just outside London, but close enough to be in central in a dash. Well, dreams change, but with Tom I knew I was going to get that family unit, everything I’d wanted since I was a little girl, and oh how I was right. But it got cut short. Please don’t get me wrong I am forever grateful for my girls and thank God the cancer came after them but I still can’t lose this immense feeling of loss. When the blood test came back and confirmed I am menopausal I couldn’t reply for almost a week, I fell apart. I knew it was coming but it was just another bitter reminder. Now every hot flash I have is like my body is laughing at me and what I sacrified.
It might seem ridiculous but somehow life after cancer seems scarier than facing the disease itself. I can’t help but know exactly just how awfully fragile life is, how you can have that toasty nice warm rug beneath you pulled away before you even have time to react. I am terrified to build my life back up to have it torn back down beneath me.
So yeah, I’m better, I’m in remission I am “cancer free” for now at least, except that I’m not. The tumors might not be there but it has left me with damaged nerves and adhesions, scar tissue, mental and physical pain. With medical staff saying it’s now about their gradual withdrawal from us so we can “get back to normal” I can’t help but wonder when all is said and done, who is going to be there when the door closes to help us pick up the pieces?