KHADIJA SHEARS’ POWERFUL SURVIVOR STORY

My name is Khadija Kargbo, daughter of the late Dr. Abu Bakarr Kargbo a consultant surgeon and Dr. Fatmata Boie Kamara a Pediatrician. I was born in Freetown, Sierra Leone. When I was 4 yrs old I moved to London, UK with my younger sister and mother. I often visited Freetown on holidays. At age 14, my mother decided it was time for her to return home to set up her own hospital, so we moved back to Freetown.

 It was on my return that I started attending The Annie Walsh Memorial School. I completed my GCE Levels there, before returning to the UK to complete my studies in Accounting and Finance.

I am now an Accountant with almost 20 yrs of experience working in various industries spanning across both the private and public sectors. I currently work as a Schools Finance officer for The London Borough of Croydon, UK. Unfortunately, I have never had the experience of working in Africa, an experience I would love to have.

I am working towards doing some voluntary work in Freetown over the summer this year not just to gain work experience, but to give back to my beloved Sierra Leone. I love children and would love very much to do some volunteer work with children or within the healthcare industry.

It is with pleasure that I share my knowledge and experience of cancer with the hope of raising awareness and encouraging younger women facing a breast cancer diagnosis.

 LET’S PEEP INTO MY WORLD

 My husband Dalton Shears and I have been married for 16 years this year and have been together for 20 years. We’re blessed with 3 beautiful daughters Zara aged 14 yrs, Yasmin 10 and Naomi 8. My family are, my everything! 

For years, I have had interest and a passion for Business but have never really pursued it. This is one goal I am working towards and one which I hope to achieve someday.

I love nature and the outdoors and I think this has been passed on to my family. I find rural settings very calming and therapeutic. As a family, we often enjoy walks in the countryside. I love travelling and learning about various cultures and having a young family has not stopped us doing so.

FLASHBACK – THE EXPLOSION

From early 2016, I noticed that I had shooting pains in my left breast. Nothing that bad; it was enough for me to take a pain killer. But it just was not normal. After about 2 months of this pain, I discovered what I thought was a lump. I decided to visit my General Practitioner (GP). I had never in the past self-examined my breasts nor had I carried out recommended monthly checks. 

I was 36 years old and did not think regular breast examinations really applied to me at such a young age. My GP was not convinced that the lump was anything sinister, however due to the ongoing pain, I was referred to a specialist breast clinic at The Royal Marsden Hospital and that is where my journey began.

 Within 2 weeks I was seen, and upon physical examination, the consultant saw ‘signs’ of inflamed lymph nodes under my armpit on my other side. Both breasts were scanned and biopsies taken. Two weeks later on 19^th April 2016 I was diagnosed with early stage Bi-lateral Invasive Ductal Carcinoma (breast cancer in both breasts). Each was a separate cancer unrelated to each other but both had the same characteristics. After a CT Scan, it was determined that I was stage 2 on the left and stage 3 on the right.

Shocked was an understatement.

The first thing that came to mind was that my Grandmother lived well into her 90s, my mother is 77 years old and going strong, no direct family history. Why me at 36yrs old? No previous medical history, I was hardly ever ill up until then. Words cannot describe how I felt but confused does come to mind. The only thing I knew to ask and the first thing I asked the surgeon was, ‘Has it spread?’. That was all I knew about cancer. I was assured at that point that from the ultrasound and mammogram, it was unlikely it had spread. But only 1 week later after my CT scan, it was discovered that it had spread to my local lymph nodes. Thankfully a lot of information and support was provided on diagnosis day.

 On diagnosis day, I left the hospital with hope. My cancers were early stage with no distant spread and they were hormone responsive which meant I was open to wider treatment options. I did not have the most aggressive forms of cancer, I was at one of the best hospitals possible in the UK for treatment  and above all else, I had faith in God. I was grateful I was here in the UK where treatment is readily available. Those were the thoughts which kept me going throughout my cancer journey.

 As time progressed, I felt I went through stages with feelings…. There was a point I believe I was in denial, scared, confused.

What worried me the most was how would Dalton cope with raising the girls? As amazing as he is, I know how hard a job it is being a mother. How will the girls cope without a mother? What did they do to deserve this? Questions no one could really answer. It was a roller-coaster of emotions and trying to determine how I was feeling alone in it self was stressful. I learnt it was okay to be unsure. My personality helped greatly. One of my weaknesses  is short-term thinking and although this can be disadvantageous, in this instance, it worked to my advantage because I was taking one day at a time. I always look for the good in bad situations and I am quick to reason things out. 

THE ROAD TO HEALING

I read widely and discovered alternative holistic treatments and remedies for side effects caused by conventional treatment. At first I felt trapped between the holistic  and the conventional world. The holistic view mostly is that the pharmaceuticals are in it just for the money being made from conventional treatments whilst the conventional believe in conventional treatment alone as that is what has been trialed and tested.

The book’ Herbal Medicine, Healing & Cancer’ by Donald R Yance has helped me immensely. My choice was to combine conventional with holistic treatments ensuring I kept the professionals informed, particularly my oncologist. It was my personal choice, one which only a patient alone can make and luckily those around me respected my choice. It is a very sensitive subject amongst cancer patients. I cannot emphasise enough, that cancer patients wishing to follow any form of herbal natural healing, must first consult a professional herbalist as every patient is different and cancers vary. There are various forms of breast cancers alone, and each treatment regime is unique.

I had an 8 hour long surgery in June 2016 (Lumpectomy in each breast and a full lymph node clearance on my right side. Just under 2 hours after the surgery, I developed a blood clot in my left breast and had to be rushed back into surgery for a further 3 hours. At this point, all the cancers had been removed. All treatments which followed were for precautionary reasons, to avoid re-occurrence of the cancers.

In July 2016, I started chemotherapy which I would have escaped had I not had the lymph node involvement. I believe the first time I really cried was when I was told that I would have to undergo chemotherapy. My main worry was not the hair loss, but the sickness associated with the treatment. My oncologist listened to me and gave me an extremely strong anti-sickness drug which I used to call the ‘magic’ pill. I didn’t suffer much with sickness.

It was tough but I successfully completed 8 rounds of chemotherapy (4 each of 2 types), each with their own side effect by December 2016. The first 4 were once every 3 weeks and nausea was the worst side effect although it was well managed with anti-sickness drugs and steroids. The second type was once every fortnight and the side effects from it were muscle pain (for which peppermint oil was my best friend ) and peripheral neuropathy. The later, I still suffer with as chemotherapy caused nerve damage.

I ate well with vegetable and fruit smoothies being my main source of food. My native Sierra Leone cuisine did wonders too….okra, bittas with potato leaves and green being a great source of iron. These, I ate with quinoa or red rice as advised by my nutritionist. I was amazed by the power of these foods as I saw how their goodness reflected in my blood test results. One of the good things that have come out from cancer diagnosis, is my ability to read and interpret blood test results! I had full blood tests before each chemotherapy session to make sure my body could handle another dose. I was determined to keep my energy levels up so I monitored my food intake and was amazed at how they reflected on the test results. I managed to work throughout chemotherapy with only days off at certain times on my chemotherapy cycle which was usually a week after treatment. Those days were my worst days, with side effects.

 After my 5^th cycle of chemotherapy, it was discovered that the chemotherapy had caused blood clots in my lungs (Pulmonary Embolism known as PE) which can be more deadly than the cancer itself. This had to be treated urgently so I then had to start 6 months to daily self-injecting a blood thinner to dissolve the clots whilst on chemotherapy. Having had a history of PE, I now always have to self-inject a blood thinner before a long haul flight as I am now classed as high risk for a blood clot.

After my 7^th cycle, I needed a blood transfusion and at that point learnt about my blood type and group.

 15 sessions of radiotherapy followed which I completed in January 2017. Shea butter (Dunnie) and Aloe vera were God sent! Applying 2 to 3 times a day meant I completed treatment without any burns. Although the treatment itself is painless, if not properly moisturized, patients can end up with severe burns and peeling of the skin.

The next plan was to reduce my hormone levels as my cancers were highly hormone fueled. The plan was to temporarily shut down my ovaries (leaving me with the choice of having more children if I wanted to) by taking monthly injections. When that was successfully done, I was to started an aromatase inhibitor which I would be on for the next 10 years. Usually after 2 to 3 injections, the ovaries would be suppressed, but not mine. After 5 injections, my very strong stubborn ovaries were still active. As this was a vital part of the treatment plan to avoid a re-occurrence of the cancers, it had to be rectified. 

My team and I decided on an oophorectomy (removal of the ovaries surgically). Another surgery – courtesy of cancer. Although we never planned on having any more children, the choice had been taken away and I was still upset by it. But then it meant saving my life and being here for me children, so eventually I got over it. Overnight I became fully menopausal and that came with yet more changes. The hot flushes were the worst! I still suffer with them now however acupuncture has helped.

I am 19 months into taking the aromatase inhibitor Letrozole (1 tablet a day). It is an extremely powerful drug but the side effects can be impossible to live with so not every patient can tolerate it. I have been fortunate to just about handle it but the side effects are horrendous. Aching joints, sore feet when standing after sitting even for a short period and peripheral tingling and numbness. With time, side effects have definitely improved. I have to take alongside Vitamin D and Calcium as the drug can thin my bones further (chemo had started this). It has also caused me to have high eye pressure and sight issues. High eye pressure especially in Black African/ Caribbean decent can lead to glaucoma. Last year I had to have laser treatment to my eyes to fix the high pressure. This was successfully and will be monitored regularly for the unforeseeable future.

 OH BUT FOR THE JOY OF FAMILY AND FRIENDS

 My husband was brilliant and still is. Without him, I would not be here today as I would not have been able to cope physically or mentally. It is unbelievable how cancer can put strain on a marriage due to the changes both physical and mental which patients themselves cannot handle, let alone spouses. Changes include excessive mood swings, changes to sex life and depending on the surgery/ treatment, body changes.

 The children were very understanding. Zara my eldest just aged 10 at the time with challenges herself as she was transitioning into High School, helped immensely with her sisters. On my bad days, she would try hard to keep them away from me when she saw that maybe I was tired or ill. 

 Friends and family all helped with school runs, hospital runs, cooking, entertaining the children & with babysitting so Dalton could also rest. My friend Laura was my main Chemo buddy as Dalton found it hard at times to watch me undergo treatment. Laura would drive me to and fro as I could not drive myself and we would have so much fun chatting, taking pictures and laughing…..yes laughing during chemo. She knows how much I love nature and even found a short cut through the woods where we would walk from the car to the hospital. All of the nurses knew her and the one time she couldn’t make treatment, they asked for her! She made hospital trips which should have been a scare, fun!

 The girls’ school helped often by keeping them after school or driving them home when needed and also taking care of their emotional well-being whilst they were at school.

 My employer was amazing by being supportive all throughout my treatment and still are. They ensured adjustments were made if needed and allowed me all the time off needed throughout treatment and for all of my numerous hospital appointments.

 My Aunt hired a cleaner to help us with housework so that was not a worry for us. I was so overwhelmed, at times, I cried often because of the love shown by all. One thing I learnt from my cancer journey was that I was very much loved.

‘EVEN THOUGH I WALK THROUGH THE VALLEY OF THE SHADOWS OF DEATH’

 Cancer brought me closer to God. Over the past 3 years, I have grown stronger in faith. One of my best purchases was ‘Trusting God day by day’ a book by Joyce Meyer.

 My fear of death has decreased tremendously over the years. Seeing my children grow older and becoming more independent has helped. Although I am currently at a good place, I am still preparing for death, as I feel cancer has put a ‘cap’ on my life.

Counselling help me tremendously to have a positive outlook and not to worry about what cannot be controlled. I now understand more than ever, that there is a limit to what I can control.

 ASK AND IT SHALL BE GIVEN’

The Facebook group The Younger Breast Cancer Network UK (YBCN) has been a life line. It is a safe place for younger women under the age of 40 yrs who have had or who are going through a breast cancer diagnosis. It does not matter how much a loved one cares for you or is there for you to talk to. It is not the same as talking to someone who has gone or who is going through the same experience.

 Younger women face additional challenges as many have younger children, some are yet to start a family but told that treatment will make them sterile and younger women are generally more sexually active. We are more conscious about our image and are at the start or peak of our careers. Having to deal with cancer with these additional challenges can be very traumatic.

 There are many types of breast cancers and pretty much every patient’s case is unique, yet there are a lot of similarities. The group is a safe and private place to talk about our challenges, worries and generally share ideas and tips. We’ll laugh, make fun of our symptoms, cry and suffer the anxiety of waiting for results together. I learnt that you can grow to love and care for people without actually meeting them in person. What I found most difficult was the announcement of a passing of a group member and I would want to know their history to compare their diagnosis and treatment to mine. This of course does not make my prognosis any better, neither are two bodies exactly the same but this I did out of fear. There were two ladies who were diagnosed the same time as myself with high lymph node involvement being a similarity we share. This is a factor which puts me at high risk of re-occurrence. Both these ladies are now stage 4 meaning that they cannot be cured. This scares me. Every case is unique. Cancer to some extent is a matter of luck. It is the uncertainty that I find the hardest to deal with.

 When treatment was done, I moved on to The Younger Breast Cancer Network UK (YBCN)– Moving on Together Group. There, we face the challenges together after having gone through treatment. The aftermath of conventional treatment and the dealing with side effects from the ongoing medications and difficulties faced as everyone thinks you’re ’fine’ after treatment has ended.

 I now suffer from Lymphedema in my arms due to having my lymph nodes removed. I should be wearing a compression sleeve always but find this terribly uncomfortable. To help with my lymphedema, I dry brush and complete specific exercises to help with my lymph flow. I find the herb supplement ‘Devil’s claw’ really helps.

I AM A SURVIVOR!

To keep sailing, this is what I do:

·         I complete Mindfulness exercises daily using the App ‘Headspace’ which is great for controlling anxiety and stress.

·         I try as much as possible to avoid negative people and situations.

·         Getting my priorities right in life which is peace, spending more time with my family and loving those around me above anything else.

·         I encourage my family to eat healthy and teach them the importance of doing this; it is a big challenge especially with the children. I have come to believe that diet alone is the most natural medicine and it can help avoid numerous health problems. We try to eat organic when possible.

·         Reduction of toxins intake- change of all detergents around my home, change of toiletries and cosmetics.

THESE THREE THINGS- WHAT I WOULD TELL A PERSON WHO HAS BEEN DIAGNOSED WITH CANCER.

1.    Whatever your religion or belief, trust in God and have faith that you will be healed. Cancer is no longer a death sentence. Our minds are a powerful tool. Stay positive whatever stage you are diagnosed at. Miracles can and do happen. Learn to control stress through meditation, relaxation, diet and general well-being. Do not be hard on yourself or blame yourself for causing your cancer.

2.    There have been several advances in treatment over the past years and through constant research, newer targeted drugs are being introduced. If finances are a problem, try natural protocols. There is absolutely no harm in trying. Explore options and find the strength to communicate and ask for help. Many choose to stay private which is perfectly fine but sometimes opportunities do not come your way if people do not know that you need their help and knowledge. Mexico is well known for its Holistic cancer treatments centers with numerous success stories of reversing various stage cancers.

3.   There is so much help and support online if needed. Even if in Africa, there are numerous Facebook support groups from which you will meet others and learn. This helps relieve stress. Try to learn more about your cancer. Try to make changes for the good and look out for the good which cancer brings. The new people in your life, lessons on gratitude, the feeling knowing that you are loved, even by strangers.