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I’ve Been Through Hell 4 Times, But I’ve Learnt Something New Every Time

October 2nd, 2017 |
Recurrence & Metastasis

by Jacquileefreestone | Patient: Non-Hodgkin's Lymphoma    Connect


One month after I lost my father to leukaemia, I was diagnosed with my first cancer, Non-Hodgkins Lymphoma, at age 9. After surviving the gruelling treatment and staying in remission for so long, I thought that I was just another lucky survivor. As a child, I bounced back relatively well and I thought that I was somehow immune to ever receiving a diagnosis like that again.

It managed to stay that way for around 15 years. It had never even crossed my mind that I could get sick again. But eventually my general practitioner informed me that my consistent UTI infections weren’t infections at all, but in fact a kidney cancer that had been growing away for many years before I’d ever discovered it.

I was shocked by the diagnosis, but I assumed I knew what to expect as I’d already been through cancer and subsequent surgery and chemotherapy. It wasn’t until one of my doctors asked “who is going to cook for you and help you get dressed?” that I started to question just how bad my health might get.

The experience was not easy.

I had complications with the kidney biopsy and lost weight recovering from a pneumothorax where they collapsed part of my lung while I lay there holding my breath on the table as they tried to get a sufficient sample. Once I’d gone in for surgery I awoke in pain and on a plethora of painkillers and unable to stop vomiting, which you can imagine was quite unbearable after a major abdominal surgery removing your kidney. As soon as I could stop vomiting, which was around the 4th day, I began radiation on a daily basis for 2 weeks. My tummy and skin, all full of gas from the surgery, pushed on my newly made incisions and made each time I laid down a painful experience. I also received, once a week, a variety of chemotherapy drugs that made me so foggy during thinking that I could barely keep a conversation, nor could I read or watch television due to how anxious and ill it made me. My nervous system must have been so overloaded from the cytotoxic drugs and radiation exposure. I was a mess.

But after 6 months of this treatment, I began to try and heal again.

This time I did not bounce back so quickly. Socialising and remembering things became incredibly difficult. I had to learn to walk properly again as the drugs had wasted away my muscles and caused nerve damage so that it was a painful experience to walk & try to regain muscle mass. I used to describe it like breaking off shackles from all of my muscles.

I remember always dreaming of my finish date. My mother and I would cross off each day with a marker on the calendar. As I reached the final day I remember feeling an initial excitement but the reality set in as I left the oncologists office on my final appointment.

I realised I wasn’t going to just be able to slide back into my old life. I had been changed, not only by my temporary weakness and weight loss of 19 kgs weighing eventually only 36kgs, but I was also changed in my mind, and my outlook on life and the future. I battled with depression for several years after recovering from this cancer & I believe it had a lot to do with a chemical imbalance created by all the harsh drugs but also the isolation I felt and feeling like I didn’t fit in with other 25 year old people anymore. I was fragile, I was tired, I was scared and I was over everyone saying “oh great so you’re better now when are you going back to work?” It’s not really like that with some cancer stories- sometimes the treatments are so toxic and life altering that it takes years for recovery. To be honest I don’t think I’ve ever gotten back to 100%. It’s this new kind of normal that I think many cancer survivors can relate to. Fast forward 8 years later. I was 32 years old and having a follow up scan for another health issue I’d had with my thyroid. I’d been feeling better and not really expecting anything to come of it, but when they began to request the specialist to enter the room to give an opinion, I knew it wasn’t a good sign and it was most likely cancer again. One biopsy later and it was confirmed, another cancer diagnosis. Papillary thyroid carcinoma.

I was advised that it was easily treatable and has a great survival rate.

We decided to take out one half of the thyroid where the cancerous nodes were, but later found it had started to invade lymph tissue so had a second operation less than 2 weeks apart. I swallowed a radioactive iodine capsule and was kept in isolation until I wasn’t radioactive enough to affect anyone around me. Treatment was done. Much easier than the first two cancers I thought, though the surgery on your throat is not the most comfortable or sightly of operations. After six months I went in for my follow up scan after being on a restricted low iodine diet for a few weeks.

Yet again, I had cancer show up.

I was mortified that it hadn’t worked and was increasingly worried that there was actually something seriously wrong with me now that I just kept getting cancer after cancer and now my body just finally isn’t responding to treatment. I thought maybe my body had gotten used to the radiation and poisons as I’d had so much already. So in again for a third surgery, this time the incision went all the way around on one side of my neck & they proceeded to take out 30 lymph nodes. So now here I am waiting again for another lot of tests in a few months to come, to get a better idea if it has in fact gone for good. Doctors say it’s looking likely but as you can imagine after already having 4 cancer diagnoses, it’s a little hard to fully believe what doctors say to me anymore and equally as hard to trust my own body.

But it’s not all doom and gloom. Although I’ve been through hell and back again and again and again, I have learnt a lot about myself, life, love, human resilience & how you should never give up. You really never know what tomorrow brings, so there is no point in worrying too much about the future. I like to focus on each day and just put one foot in front of the other. Some days it’s hard- really hard - and then other days I just feel so grateful that I was strong enough to overcome all that I have and to still be able to have a smile on my face and love in my heart for those that I care about.

Life truly is a gift. Cancer just highlights that realisation even more.

Has cancer taught you anything? Share your experiences in the comments below.


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Jacquileefreestone    Connect

Patient: Non-Hodgkin's Lymphoma

The first time Jacqui heard the word cancer she was 7 years old, when her father was first diagnosed with Leukemia. He passed away after a 2 year long battle with his illness and then she got to experience her own first cancer just one month after his passing. She was 9 years old. Her first cancer was a Non-Hodgkins Lymphoma, for which she had surgery and 6 months of chemotherapy to help her recover. After years in the clear she eventually developed a kidney cancer that is rare in adults (Wilm's Tumour) which led her to having a radical nephrectomy (kidney removal), 6 months of 3 chemo agents (27 cycles) and radiation. She eventually recovered from this but around 8 years later she was diagnosed with her 3rd cancer (Papillary Thyroid Carcinoma with Follicular variant). I underwent two surgeries and did a dose of radioactive iodine which didn't quite eradicate the cancer. I was re diagnosed with thyroid cancer 6 months later and underwent yet another surgery where they removed 30 nodes from her neck. She's still awaiting an all clear but she's doing much better than she has been in the past, so fingers crossed. 

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