Living with a Terminal Illness

posted in: Community 💙, Home Page, Life | 0

by Lauren Hew

 

Four years ago I had just given birth to our second child Ashton, with Ava being born 19 months earlier. My husband and I, who have been together for 11 years, were settling back into being parents to a newborn again when everything changed.

My name is Lauren Hew, I am a 34-year-old teacher at a local Catholic school, wife to my husband Ken and proud mother of my 2 beautiful babies Ava (6) and Ashton (4). My life has been pretty low key – after finishing high school I attended University and attained my Primary Teaching Degree, enjoyed teaching for a number of years before I married my husband and had my 2 children. Life was all going according to plan, that was until 2 days before my 30th birthday, I discovered that I had been diagnosed with a rare form of Cancer.

 

 

Ash was 3 months old when I realised I was in too much pain to do the required tasks of being a new mum, washing, bathing, carrying and nursing my baby. I couldn’t complete these without being on heavy duty painkillers. I had horrible pain in my back on the left-hand side. I couldn’t take it any more so I went to my physio to get my back worked on. After 2 visits she wrote up a referral for me to have an MRI.

Within a couple of days, I was in the MRI machine being scanned but immediately after my scan, the radiographer told me that I needed to have another scan. I looked him right in the eye and straight away realised that something was wrong. A fear came over me and I told him to let me look at the screen (to be honest, I wasn’t really asking). I looked at the scan of my body on the screen and it didn’t look how I knew it should look. There was a HUGE black mass in the picture. Without thinking I screeched “What the f&*k is that?”. I knew it was cancer right away, but no one would say the words.

After a few more scans and a trip to my GP, I was waiting for someone, ANYONE, to just tell me that I had cancer. Still, no one would. I had this huge mysterious growth living in my body, taking refuge and I had no idea what it was.

 

 

After 2 long weeks of waiting, I received a phone call that a specialist at the Chris O’Brien Lifehouse would take on my case. Little did I know at the time that he is the best in his field. As soon as we met he took a look at my scans and narrowed my ‘growth’ down to 2 options, both being malignant cancer. Immediately I was relieved. He was the first person to tell me the truth.

A biopsy to confirm was planned for 2 days later but unfortunately for me, that date was also my 30th birthday. The first of many depressing birthdays to come was met with great hesitation. I had no idea what was in store for me.

After the operation, the specialist met with me one on one to discuss. Shaped like a teardrop, the tumour was 11cm x 7cm x 9cms in size and it had eaten through my 11th rib at the back. It was 1cm away from my aorta and pushing on my left lung. The specialist could tell it was Ewing’s Sarcoma just by looking at the sample, however, he was still going to wait for the results to come back. 

Ewing’s sarcoma is a rare cancerous tumour that grows in bones or soft tissue near bones. It can develop anywhere in the body, but most commonly affects the arms, legs, ribs, spinal column, and pelvis. Treatment for Ewing’s sarcoma involves a combination of chemotherapy, surgery, and/or radiation.

The survival rates for this type of cancer are 70% chance of survival which then go down to 30% chance if metastasises (technical word for spreads). Once it has metastasised to an organ the statistics are then not spoken about – that’s when they will tell you that statistics don’t matter.

As soon as the sample was back, it was full steam ahead. Being 30, I was classified as a “young adult” so as well as meeting with my new Oncologist, I also was also introduced to a Clinical Nurse Consultant (CNC) who was my go-to whenever I was sick or needed explanation about anything. We sat down together as a team and I was presented with the plan of what we needed to do. In short, it was chemotherapy, followed by surgery, followed by more chemotherapy. I was told by my surgeon that what they needed to do was going to take up a year of my life.

 

 

We had no time to freeze any eggs, which was briefly touched on, as I needed to started chemo ASAP. And so the horrid chemo began. If you have any preconceptions of how horrible chemo is, take that and times it by 10. I was hit with every side effect in the book and others that weren’t in the book. Nausea, vomiting, constipation, fevers, sweats, fainting, weight loss, chemo brain, curling fingernails, full body hair loss, pins and needles, mood swings, sun sensitivity, blood transfusions. It became such a joke that everything was going so wrong with my body that we called it “Doing a Lauren”.

When I wasn’t at chemo, I would stay with my parents while my husband lived with our children at his parents’ house. I never wanted the kids to see me sick so I would go home when I was well enough. This meant that for the whole time I was having chemo, I saw them 3 days in a fortnight, which I found just torturous.

After 6 months of chemo, it was found that the tumour had shrunk enough for surgery. So in I went, optimistic that the surgeon would clear out the diseased mass and get ‘clear margins’. It took him 6 hours to cut out my 10th, 11th and 12th ribs on the left-hand side, shave the spine where those ribs attached and take out the left side of my diaphragm.

 

 

At that point in my life, lying in ICU, in an induced coma, which I fought, I realised I was in the most pain I had ever been in. I was supposed to be in my medical coma for 3 days post surgery to let the body heal and my lungs to re-inflate. They couldn’t even keep me out for 1 night. I laid there with a breathing tube down my throat, connected to a machine which was trying to breathe for me and I just couldn’t relax. I was conscious and I felt like I couldn’t breathe.

After 2 weeks of chest tubes, drainage tubes, bed washes, pain, physio and walking frames I was discharged and sent home. I was given a couple of weeks to recover and then it would be straight back to chemo. After 4 more months of chemo, we were finally at the end of treatment and my appendix burst. DOING A LAUREN!!! Emergency surgery followed, as well as a short hospital stay and then I was finally ready to go home.

It had been a year of hell, fighting this horrible disease when I received the greatest news any Cancer patient wants to hear…. I was clear and officially in remission! Finally, I could resume my life again and pick up where I left off 1 year ago. Sure I needed to have scans every 3 months for the next 5 years, but that was a small price to pay for being cancer free! I returned to work, even received a promotion and started to LIVE my life again. During this time I also went through a reconstructive surgery to repair parts of my body that had been left disfigured as a result of the rib surgery.

Then 1.5 years later during a routine scan, I received the news that not only had my cancer returned but it had made its way to my T11 vertebrae and my lungs! I now had metastasised cancer. The statistics of my survival and beating cancer had gone from 70% to 20%. It was as if God slapped me across the face.

So back again to chemo and this time radiation as well. I was booked in to have radiation to the spine and chemo for the numerous lung tumours and was given the maximum blast of radiation that the spine cells can withhold but unfortunately, it was too late. The tumour in the spine was larger than first thought and it had eaten too much of the vertebrae.

Early one morning while changing Ash’s nappy I let out an almighty scream. Not only did I hear the POP but I felt it. My vertebrae had broken. I was rushed to hospital on full spinal precautions and given every pain med under the sun. Eventually, after 2 of weeks pain, the break was stable enough for me to go home.

With my future starting to look a little bleak, I decided to do something special and organise a wedding renewal for Ken and I but with one big difference: Ken would be in the dark about the whole thing. So many people offered me their help and their services that within 2 weeks the whole event had been organised. The day was magical and we even disappeared for a few days on a honeymoon 2.0.

 

 

Afterwards, again, we pushed on with chemo for a few months until it was imperative to operate on my T11 vertebrae as the tumour was still there and it was impinging on my spinal cord. In order to keep me out of a wheelchair, I faced a 10 hour operation to remove my T11 vertebrae, replace it with a metal cage, rods and pins.

Now with no T11, the cancer had no home, but that didn’t stop it. Instead of growing IN my bones, it was now wrapped AROUND my spine. This led us to make the decision to change the type of chemotherapy I was receiving and we gave it some time to work but again it was too late. I was rushed to hospital again in immense pain. The tumour had grown even bigger and was now compressing my spinal cord. I was verging on losing my legs again, as my team rushed to plan the next steps. As well as continuing with a new chemo, I was to have radiation again to the spine.

This time I was hospitalised for 6 weeks and was referred to the palliative care team. In that time I lost function of my bladder and bowels, had increasing weakness in my legs and I was as high as a kite half the time. The doctors told me that any treatment we did going forward was not ‘curative’ anymore, I had now crossed over to ‘non-curative’ treatment plans. 

It was then that I decided to focus my energy on working on my legacy – my kids. Every moment where I was thinking straight, I spent it writing future letters for my kids. I addressed every aspect that I felt the kids would benefit from having their mums input such as “The first time you kiss a boy”, “The first time you get your period” and “When daddy gets a new girlfriend”. I have packaged up all of the letters into an Ava and Ash box and have given instruction that they not open any letter until the event happens.

 

 

This last year has consisted of the removal of more spinal tumours, more chemo, more radiation and a ton of related operations. Most recently I had 10 tumours cut out of my right lung followed by a spinal operation and 2 weeks of radiation to the spine.

Despite the ridiculous financial strain that we have been under during the past 4 years, and will continue to be under (my surgeries have ranged from $10,000 – $30,000 per operation), I live each day as if it’s my last. I savour every moment with my babies, good and bad. I sit in the warm sun, I breathe in all the scents in the air around me, I squish my toes in the grass, I gaze at the stars and meditate during thunderstorms. I have been given the worst gift in the world, cancer. BUT it has taught me to focus on the NOW, not the LATER.

It has taught me a clear message: ENJOY LIFE NOW, THIS IS NOT A REHEARSAL. I hope you can take that message away with you after having heard my story. Thank you for reading.


Lauren’s friends have set up a GoFundMe link to try and raise some funds to help her and her family with general living costs like groceries, medication and child care payments. Click here to help a fellow RDM enjoy time with her family as comfortably as possible: https://www.gofundme.com/help-support-my-dear-friend-lauren