Cathy Van Lill Brave & Beautiful Ambassador
- Stage 4 Metastatic Breast Cancer
At the end of last year, a friend asked me the question, “Would you change anything of your journey with Gizmo? (What I call Cancer now)."
Surprisingly my answer was no!
What??? I have been broken down to rock bottom and am now slowly regaining strength each day. I look and feel completely different, stripped of my feminine features and I still would not change a thing!
Then it dawned on me how much I have learnt and what an incredible year of growth it has been....Body, Mind and Soul.
"One of the hardest things to do in life, is letting go of what you thought was real." At 32 years old I was a healthy (or so I thought) woman, happily married to an amazing man and a mother of 5 cats. Although a Physiotherapist by trade I was working for Medtronic as a Spine-Sales Consultant. I was successful in my career and we were living a great life in Johannesburg. All of this was to come tumbling down and 2016 became the toughest year of our lives.
Monday 1st of February 2016, (there's a reason I don't like Mondays!) I was waiting to have a breast sonar ordered by my GP. I had made an appointment with my GP as I was having trouble equalizing my ears. My GP diagnosed an inner ear infection. We were both surprised as I had not experienced nausea or dizziness. In fact, I had driven to Nelspruit from Johannesburg and back for work that week. Though I must admit my body had been giving me warning signs. I however ignored the warning signs until I was forced to go to my GP for my ears. During the consultation with my GP, I asked her to please look at a lump in my left breast. I could see and sense the worry in her eyes and from that point I began to fear what could be coming. From a breast sonar I had a mammogram and core biopsy right then and there. It was at the Linksfield Mammogram Centre where I collapsed in a heap of tears. My fears had surfaced and I could not ignore it anymore. It was at that point that my rock, my husband sent me a message asking if I am alright. I had not informed him of my whereabouts as I did not want to admit to myself what was happening and was still attempting to brush it aside.
The waiting game was torturous for both of us that week. I have always been on the medical professional side with being a physiotherapist and now I was on the patient's side and I felt so helpless. I could not use my Physio status to get the answers I desperately needed. We had to wait five days for the core biopsy results and then consult with a surgeon to remove the lump. I asked my husband, Eldre to please book a weekend away on hearing the news. In my heart of hearts I knew the answer and wanted to be far, far away. A weekend away at a game lodge in Parys was booked and we counted down the hours. On Friday, 5th February 2016 Eldre and I went to see my GP before seeing the specialist surgeon. As my GP was verbalizing the dreaded news of Gizmo, I broke down sobbing in my husband's arms. I was 32 years old and I was being diagnosed with a malignant, estrogen and progesterone receptive left BREAST CANCER with lymph nodes involvement. In a state of shock I still asked my GP to check my right ear! I didn't know what to do or say. That afternoon Eldre and I had a consultation with the specialist surgeon. All I remember is that on Monday, 9th February we had to be back at Linksfield Hospital, to be subjected to a battery of tests called a metastatic work up to determine if the cancer had spread and what the staging was.
"Told you so! Sincerely your intuition." On the road to Parys Eldre started calling our family. I could not talk to anyone at that point and I was amazed at Eldre's strength on the phone. All I kept repeating was, "It's not fair, why me?" Our whole world started collapsing as we were escaping into the bush. Positive blessings started that day even though I was completely oblivious to it. Even though I had a strained relationship with my father and step mother Rose, with the news of gizmo they stepped in and took control where we couldn't. I eventually managed to engage in a small conversation with both my Dad and Rose and as for the rest, I needed to isolate myself from the world to digest everything. However, I have some tenacious friends who managed to contact me and so my army was starting to take shape to fight this dreaded disease. To this day I am still amazed by the incredible support from family and friends and feel forever grateful and loved.
On 9th February (another Monday!), Dad, Rose, Eldre and I trudged back into Linksfield Hospital for the metastatic work up. We went from one department to another other, from being a pin cushion, to having a bone isotope injected into my veins, to being exposed to radiation to discover every test was negative. Celebration time!!! Cancer had not spread!!!! Time to see an Oncologist and get rid of this tumour. Sounds easy. What unfolded in the next couple of months was a horrific nightmare where I could see light at the end of the tunnel, but could not reach it.
From the metastatic work up, the next step was to see an Oncologist in Pretoria. Pretoria is a half an hour drive from our home but we were informed by both my GP and Specialist Surgeon, that this Oncologist was the best and the Cancer Centre incredible. How our world started crumbling further from that day. This supposed "top Cancer Centre" caused me severe PTSD (Post Traumatic Stress Disorder) which was measured on a graph. I was treated as if I was a lab rat at this evil clinical place that I will never go back to. With me saying that, the Oncologist had his place in sending me for a CT scan followed by a nuclear PET scan. Thankfully Rose had arranged for a second opinion with my current Oncologist in Durban, Dr. Luci Jooste from Hopelands. She gave me every fighting chance and I will be eternally grateful to her and her team. It was on the evening of our engagement anniversary that I would find out my fate from the PET scan results - Stage 4 metastatic breast cancer which had spread to my spine. I was handed a death sentence (or so I thought at the time) and I slowly saw myself spiraling into a heap of negativity. My life was over. I had watched my grandmother pass away from gizmo after chemotherapy and I, now had to also accept this as my fate.
The start of my spiritual path on this Journey happened when I connected with Heike Sym, a psychic medium who prepares metaphysical profiles. My wonderful friends sent Heike my PET scan results and she analyzed them with metaphysics. What is that you ask? I enquired the same and the report resonated 99.9% with me looking at my metaphysical analysis. This analysis showed the underlying emotional / mental causes for physical illness and the metaphysical way to overcome them. I was astounded and a complete new world opened up to me. I understood then what I needed to accomplish in order to treat gizmo from a mind and soul aspect. From this beautiful connection my spiritual path opened. Spirituality has been defined in numerous ways including a belief in a power operating in the universe that is greater than oneself. I knew then that there was a bigger picture and my story was just beginning.
My incredible husband, family and friends, my army carried me through the darkest days and became my strength when I had none. School friends, who I haven't seen in years since school days, gathered together in support for me with gifts, food parcels and love. Friends managed to source medical cannabis oil and I started on a daily dose on 12th February 2016. This magical plant medicine pulled me through the toughest side effects of chemotherapy and even started reducing the tumor size before I began any radical medical treatment. I am now getting involved with activists to legalize cannabis not only for the cancer reducing properties but for the enormous amount of health benefits. Chemotherapy broke me but Cannabis built me up! I now take this hugely beneficial cannabis oil every night and in my husbands words, " You will never ever get off this stuff!" My husband, my rock and twin flame agreed for us to have a tattoo together, "Just Live" with a heart beat. This motto tattooed on us was the start of us taking back control. The next step was to cut my beautiful long multi colored hair to a Chinese bob.
Radical treatment started with a horrific chemotherapy regime. A regime not conducted anywhere else in South Africa, only in Pretoria. Not only did I have the dreaded red devil chemo, my body had to endure 3 chemotherapy IV's every 3 weeks continuing for 6 rounds. After round one the red devil lived up to its name by inducing an allergic reaction. Thankfully Rose, Nicole and Eldre looked after me together with anti-histamines that I had stocked at home. This was one of the many red flags that I encountered from the cold oncology centre in Pretoria. No anti-histamine injection or tablets administered prior to chemotherapy. Upon Rose frantically calling the nurses at the oncology rooms (no direct number for the Oncologist!), it was mentioned that there can be an allergic reaction due to one of the chemotherapy drugs that came from the bark of a poisonous tree! My body was given poison? That is when I started losing faith in the medical industry and the urge started to help others and educate.
My side effects didn't cease there. Severe headaches and tinnitus after round one, the chemo led me to a cerebral (brain) MRI for a possible brain tumour?!? All this while I was explaining to the Oncologist that I knew these side effects were from the chemo. The shocking response from the Oncologist, "It is not a side effect of the Chemotherapy that you are on!" I wanted to reply that whether he agreed or not, I have these side effects and he needed to manage me! That's the role of any medical practitioner. I then knew that this Oncologist was not for me and that I needed to proceed with different doctor.
Exactly 2 weeks after the dreaded 1st round of chemotherapy my hair started to fall out. I secretly hoped that everyone was wrong and even though I had the red devil chemo my hair would not fall out. I shattered into a million little pieces as my family and friends eventually shaved my head one evening. I felt extremely silly, it's only hair! It will grow back. I contacted Wilma, an ex Miss SA who had reached out to me. Wilma is a breast cancer warrior and sent the following message, "Dearest Cathy - you are not silly at all - it is very traumatic to loose your hair and your breast! That is a part of your identity as a person and a woman - shave your hair and finish - as this falling out part is also terrible and such a reminder when you wake up with hair next to you on the pillow - so shave it off and finish." What was quite ludicrous is that all I wanted was my left breast off and the tumour out. I wanted the mastectomy more than ever now. "Have I gone mad? I am afraid so, you're bonkers! But I'll tell you a secret....all of the best people are".
For the next 3 rounds of chemo my family alternated between coming up to Johannesburg and Eldre and I flying directly after chemo administration to Umdloti Beach where a great deal of my healing took place by the ocean. We underestimate the intense healing properties of being by the sea with our feet in the sand. Another motivating factor was Umdloti's water restrictions! Everyday the water was turned off from 10am till 4pm - this hauled me out of bed every morning to shower before the water was turned off!
"FEAR has 2 meanings - Forget everything and run or Face everything and rise."
The 4th round was another turning point and a huge step was taken to change my entire medical team to Durban. Eldre and I headed to Umdloti directly after my chemo round. The airport's wheelchair assistance was an immense help to us whilst traveling between Durban and Johannesburg. What happened next made me lose the last bits of faith in the medical industry. My ear was ringing again but this time the tinnitus was louder than the TV! I think my parents and Eldre were ready to throw me into a mental asylum and I would have agreed. From trips to the GP, ENT and Auditory assessments, my ear tinnitus was being caused by moderate hearing loss due to toxicity from chemotherapy! What I had been saying and repeating over and over. Right then and there I wanted to throw in the towel, stop all treatment and be done, done with life, done with everything! In a panic Rose called Eldre who was in Malawi on business and then she called a 2nd oncologist in Durban - the next step. Little did I know, my change in oncologists would result changing to a 3rd oncologist the following year. I was searching for more than the "standard treatment" No one was going to stop me nor hinder me with their lack of ethical and knowledge. A series of breakdowns and breakthroughs as a close soul sister said to me. "Trying to push this problem up a hill. When it's just too heavy to hold . Think now's the time to let it slide." Lessons in detachment, thanking people for their part in my journey and letting go.
"You gotta look for the good in the bad, the happy in your sad, the gain in your pain, and whatever makes you grateful not hateful." The 2nd oncologist carried me through the next 2 chemo rounds and eventually surgery. Another support system arose with a whatsapp group called Soul Sisters. A group of 25 women, all either undergoing the dreaded gizmo or warriors of it. I am so grateful to Michelle, Sharon and Candice from Pink Phoenix Cancer Foundation for guiding me and others along our Journey. You have to have people in your army that have gone through gizmo. The support and advice that you give each other is immensely valuable. So the 1st box ticked off (chemotherapy) and light at the end of the tunnel. Another horrible box to tick - Surgery. Funny enough, I wanted the surgery as in yesterday because I wanted this gizmo tumour out of me. Chemotherapy was incredibly traumatic for me, my husband and my family.
It was at the end of chemotherapy where I completely surrendered. Now I have to start buying shampoo again! I was a broken little girl and my PTSD commenced. I found a description of my chemo period which was perfectly suited to my time with it, "An awful period of insanity!" I was stripped of my identity, no hair on my head , no eyebrows, no eyelashes, a whiter shade of pale and then the next stripping moment, surgery. Gratefully my Durban general surgeon is a conservative surgeon who eventually discouraged me from going through with a double mastectomy. The only reason I wanted a double was to prove to the Pretoria Oncologist that I am a fighter and no chronic rounds of chemotherapy were for me! In July 2016, Dr. Funnell performed a left single mastectomy with 11 lymph nodes removed from left axilla. Surgery was a success! I however received shocking nursing care and almost walked to the car the next morning to get away. Post mastectomy I was flung into full blown menopause. The following days, I suffered severely from night sweats and extreme hot flushes to the point that I slept on a towel. I held a towel and Eldre helped me to change into a 2nd set of pajamas every single night. Another spiral of hell had started and I needed to keep my fighting spirit alive as this 2nd blow after the chemo stripped me further. A soul sister termed this phase perfectly - I was a shell. Empty, broken and now physically horrendous looking. I came across this quote, "You have to find that place that brings out the human in you, the soul in you, the love in you." I intuitively knew that if I was to come out of this alive I needed to find that and I that is what I did!
"She made broken look beautiful and strong look invisible. She walked with the universe on her shoulders and made it look like a pair of wings." I could see the goal posts but just out of reach. 3rd box to be ticked - Radiation. 6 weeks of Radiation was squeezed into 5 weeks and in the last week I received radiation twice a day, 6 hours apart. This was all due to the fact that mid September we were going to Mauritius to celebrate this final closure of the terrible radical treatment. I was banking on 5 weeks but the 2nd oncologist added another field, supraclavicular to be radiated. Radiation was a breeze until mid way through, the extreme fatigue, weakness and shortness of breath sent me spiraling into despair again. Breathe. It's okay. You're going to be okay. Just breathe. But I couldn't! I could not even walk 10m without being completely breathless. Day by day Cathy, day by day.
Do you ever feel like you're in season 5 of your life and the writers are doing outrageous things to keep it interesting? Well I still feel this way currently with my ongoing dealings with Discovery Health Medical aid. I had always disliked Discovery Medical Aid whilst practicing as a physiotherapist. Their shocking mistakes with claims and rates were beyond ridiculous and I avoided them like the plague. All to have to join Discovery through Medtronic when I moved from physio to spine surgical device sales. Everything was running smoothly until my oncology benefit was used up around August last year. Unexpectedly I received medical aid remittances to pay 20% of my radiotherapy! At roughly R10 000 a day, 5 days a week for 6 weeks that adds up. What infuriated me was the fact that cancer is a PMB (prescribed minimum benefit) condition which means according to the Council for Medical Schemes, " Prescribed Minimum Benefits (PMB) is a set of defined benefits to ensure that all medical scheme members have access to certain minimum health services, regardless of the benefit option they have selected." I have spent, wasted, countless hours on the phone repeating the same thing, "I am a health care professional and I know my patient rights. Cancer is a PMB condition and I am flagged for PMB on Discovery. I am on Tier 1 treatment and therefore all my consultations, diagnostic tests and Tier 1 treatments should be covered in full." Presently, I am still in conflict with Discovery Health with new issues popping up continuously.
To complete treating Gizmo from a Mind Body and Soul aspect, I stumbled upon a spiritual life coach. From being interested in a workshop that she was holding "Meditation, Stress and Relaxation" Sam's guidance came through in tenaciously contacting me to attend and eventually have one-on-one life coaching sessions with her. Connecting with spirit together with transformational life coaching techniques especially "Deeper Deeper" emotional releasing technique, became another instrumental game changer. I cannot describe my experiences during her sessions however I can say that I am truly transformed. "Transformation is often more about unlearning than learning." It was there at the sanctuary where I opened up my new eyes to the world leaving behind the negativity, releasing the negative emotions and I now see the world through beautiful bright, and shining eyes. I connected with my past and finally acknowledged the real me. My passion and hunger for life rolled through again. I was taught to "Just Live" with an open heart again and zest for life! These techniques and daily practice assist me daily in navigating life and having a truly loving human experience.
"One day, she finally grasped that unexpected things were always going to happen in life. And with that she realized the only control she had was how she chose to handle them. So, she made the decision to survive using courage, humour and grace. She was the Queen of her own life and the choice was hers". Radical treatment finally came to a halt - Chemotherapy, Mastectomy, Radiotherapy and finally Reconstruction. Where to from here? I will have ongoing treatment consisting of anti-estrogen treatment of daily tablets and monthly hormone injections, bone strengthening drips monthly and oncology check ups with blood tests every month. I am currently onto my 3rd oncologist who is working with me holistically. Through this transition, I finally was guided to a gynaecologist where another part of this journey occurred - the fear of dreaded gizmo returning this time in my ovaries and uterus. An unexpected surgery occurred with ovarian cysts and part ovary removal together with a uterus scope and scrapping. This experience led me spiraling downwards due to the ICD10 diagnostic code used Ovarian Cancer! I was pushed from pillar to post and forced down on my knees to go back to basics Mind Body and Soul work. Through this experience I gained further insight to myself and life purpose.
My Journey continues with the healing of myself, Mind, Body and Soul - in peeling back the onion layers. My work on myself is not over and is a daily practice that I have instilled in myself. And as for my future, I am giving back through education, transformational life coaching and eventually working towards opening up cancer holistic centres around South Africa. This is my life purpose, a healer through the Divine. When you're able to view painful lessons as blessings in other words. A blessing is what happens when you see the blessing in the lesson that your challenge taught you. There are only 2 energies in life - Fear and Love and I will choose Love every time and thank the universe for teaching me this.