The Story of a true survivor

I am Hajira and I am a breast cancer survivor. I live in the city of Francistown, Botswana. My journey started in March 2011 when I work up one morning to my T Shirt soaking wet, I immediately realized my breast was leaking a clear liquid. At the back of my mind, I figured it could be Breast Cancer, but for some reason I did not freak out at all. Initially I did not share this with anyone, why I did this I’m not sure, however later in the year I told one of my sister’s and she insisted I should go for a mammogram. I subsequently told my husband and we eventually went to South Africa where I had my first mammogram in November 2011. My breast leaked so much during the procedure that there was fluid on my feet. My gynae reviewed the radiographers report and said I had a blocked duct, dispensed some medication and said I should be fine. I did find this rather odd as my youngest daughter was almost 3 and she barely breastfed. I took my meds as prescribed and carried on with my life. The leaking got progressively worse and on some days I even experienced some pain. I consulted with my local GP who sent for a breast scan locally and yet again they did not detect anything suspicious. I was put on a course of antibiotics and steroids and continued with my life.

My sister than took the initiative and made an appointment for me at another hospital to have a second mammogram. My husband was busy at work and said he could only take us to South Africa in January of 2013, not suspecting the worst I agreed. I remember having my mammogram and although my breast did not leak as much as my first mammogram I could see the look of concern on the radiographer’s face. She immediately took me through to her office and called a breast specialist Professor Carol Benn at Milpark and made an appointment to see her the same day. I eventually consulted with Professor Benn at 7pm that day, I thought to myself what a dedicated doctor she was, she has the most amazing manner and exudes kindness and empathy. After taking down my family history she advised that I could come back in April when both my girls were on holiday for a follow up biopsy.

My eldest daughter was in her final year of primary and it was a super busy time for me, I was assisting at the school with the play my daughter was taking part in and my youngest had started play group. Hubby and I discussed my situation and we agreed that we would go back to see Professor Benn when the girls were on half term break in February. I was fortunate to have the support of my family, my girls stayed with my mother and father and my sisters and brother were all around to help out with them too.

We arrived in Johannesburg on the Wednesday I saw Professor Benn the following day and had my first biopsy on the Friday. We were given an appointment for Monday to get the results. Hubby and I were feeling super positive and we were making dinner plans and the girls had asked for a few things which we were going to buy for them. Little did I know that my life was going to take a different path. I clearly recall Professor Benn’s words, I am so glad you came when you did…you have cancer, Hubby and I were both in shock and I couldn’t help but cry as I figured a cancer diagnosis meant that I was going to die and my kids were 3 going on 4 and my eldest 11 going on 12. I was 42 years when diagnosed. My life was shattered at that moment I did not know what was to come.

Professor Benn advised us that we could return to Botswana, and would have to return the following Sunday to see her as I had to have a lymph node biopsy on Monday. We returned to the hotel and packed up ready to leave the next day, hubby and I shared our feelings and cried together as we were facing an uncertain future. My family was equally shattered, my youngest didn’t understand much, but my eldest totally withdrew from me, even refusing to come home preferring to stay at my Mum’s, it was her way of coping but she did come around and was a great help and support to me. I was overwhelmed with visitors after the news spread in our town that I had cancer. Our door bell never stopped ringing with concerned friends coming to see me. My husband commented that why are so many people coming round and calling and I said to him we will never know whose prayers/duaas will take me through this. I remember I cried the whole first week as I was quite emotional, but I had to sort out my girls as well as myself before returning to Johannesburg for a little over 2 weeks or more. The first time I would be away from my girls for this length of time. My faith kept me strong and after that first week I decided I was going to be positive and “fight like a girl.” I needed to be an example for my girls, life certainly throws us curve balls and how we react determines if we come out stronger or weaker. Two verses from the Quran kept me grounded through my journey “Allah does not burden a soul beyond that it can bear’(2:286) and ‘So, Verily, with every difficulty, there is relief’” is the 5th verse from Surah-al-Inshirah, the 94thsurah in the Quran. This verse gives a message of hope and encouragement.

I had lived for 2 years with a leaking breast and when diagnosed I had Stage 1 cancer DCIS (ductal carcinoma in situ). My cancer was hormone driven and er, pr positive and her2 negative. The cancer was confined to my nipple as small as a wart and fortunately did not spread to my lymph nodes. After my lymph biopsy I was scheduled for a mastectomy of my left breast the following Monday, this was the course of treatment advised by my team of doctors. I was given the option of a mastectomy of my left breast only or a bilateral, I chose the latter simply to avoid further surgery. My doctors gave me the option of immediate reconstruction with a gel type prosthetic. I had the mastectomy on the 18th March 2013 and remained in hospital for 4 days thereafter. A lesson I learned during this experience is how much we take for granted. The simple task of lifting my arms to comb my hair was not possible after my surgery, putting a dress on over my head was another challenge, but Alhumdulillah with each day that passes you gain your strength and every milestone you reach is a victory. I was advised by a close friend to buy shirts that buttoned down the front for after surgery, I took their advice and this made my life so much easier. After being discharged from hospital, hubby and I stayed at a hotel for a week as I had to have my wound dressed at the hospital and I also had a drain. We missed our girls so much and got tired of eating takeout so with permission from the hospital I was allowed to travel back to Botswana and the nurses showed hubby how to clean and empty my drain. I was relieved to be home and surrounded by family and friends. After a week I returned to South Africa to have the drain removed, it was not an easy journey as we happened to travel back on the Easter weekend, we got stuck in bumper-to-bumper traffic and we were in the car for almost 10 hours with a drain attached to my body. After my drain was removed, I returned home, just in time to see my daughter’s performance in the school play. Alhumdulillah always.

I was given an appointment for 2 weeks later where I was to meet my oncologist, the plastic surgeon (who did my reconstruction) as well as Professor Benn.

My recovery and healing post- op went smoothly I followed all my doctors’ orders, the hardest been not being able to have a shower for a month as they wanted to keep the wounds dry. Alhumdulillah I healed well. At this stage the doctors were unsure if I should have radiation or chemotherapy, in order to determine this, they did a test called a genetic oncotype. This test gave a cancer occurrence rate of 16 and my doctors agreed that I would not require either chemo or radiation. I was however prescribed tamoxifen for a period of five years and contraceptive injections every 6 months as the doctors felt it would be best if I did not have my periods during this time. The lab results of my mastectomy also revealed that my margins were not clear, so 4 months after my mastectomy I had further surgery to clear my margins. I spent 1 night in hospital and the lab results were clear thereafter.

Within 3 days of taking the tamoxifen I was affected with the most severe joint pain in my knees with it being progressively worse in my right knee. I did develop arthritis after the birth of my second daughter and this was severely exasperated by the tamoxifen. I also struggled with severe hot flushes, hair thinning, mood swings as well as short term memory loss. In short the treatment throws you into early menopause. I persevered through all this and lived my life to the fullest doing my best to fulfil the needs of my family and myself. I took on a job in 2014, fortunately I could work from home and became actively involved in the PTA at my girls’ school. I would often have days when I did not feel well and had to fly to South Africa to consult with my doctors to get the medical attention I needed. I had to learn to travel and go to all my appointments on my own as it wasn’t always possible to uproot the girls and hubby each time. Fortunately, we had direct flights to Johannesburg so I would fly in and the hotel I stayed in would arrange transport to and from my hospital appointments. At one time I developed cellulitis which was extremely painful and to make things worse it happened the week before I hosted my niece’s bridal shower. But Alhundulillah that too passed. While I was on tamoxifen, since I did not have a regular period for the 5 years, I had to ensure that I had regular gynae visits. My uterus lining would thicken during this time and I had at least 3 D&C’s while on tamoxifen. I also developed type 2 diabetes and I am now diabetic.

Over the years the joint pain continued to get worse that the simple task of putting one foot in front of the other was the hardest thing I could do. The doctors tried all kinds of treatments including steroid injections in my knees as well as PRP treatment. This was extremely painful and I ultimately never got any relief. I literally walked around in a state of pain 24 hours a day. I was referred to a rheumatologist who tried to manage my condition.

When I reached the 5-year mark, my Oncologist reviewed my case as ideally tamoxifen is given for a period of 10 years. At this stage I had a very bad quality of life, and the joint pain was just getting worse. He advised that my chance pf getting cancer would never be 0% but since I had stage 1, I could stop the Tamoxifen as well as the contraceptive injections.

I cannot have a mammogram as I had a mastectomy, but I do have a breast scan and blood tests and consult with my oncologist and breast specialist annually as the possibility of recurrence will never be zero.

By the end of 2019 the arthritis in both knees reached its peak and I was at the stage that if I did not have a knee replacement I would have no option but to resort to a wheel chair. I certainly did not want this. I was scheduled for my knee replacement surgery in January of 2020, but in December of 2019 I got a period after 7 years of no bleeding. I consulted my gynae and he advised that I would have to come through to South Africa, after consultation I had to have a D&C, the bleeding finally stopped after a month. After all this I was not feeling well at all and had very pronounced pain in my right breast, I had to travel back to South Africa where I had to undergo a bone scan and blood tests to rule out that the cancer had not returned. Alhmdulillah all my tests were clear and I was given the go ahead to have my knee replacement surgery.

I had a knee replacement on my right knee in February of 2020, it was a very painful surgery and I opted to stay in hospital for 10 days as it would be easier for me than staying in a hotel. Alhundulillah I recovered well and was able to complete my physio at home. I was fortunate to have had my surgery and return home safely before the start of the pandemic. My left knee has severely deteriorated and I need to have a knee replacement in the near future In Shaa Allah Aameen.

My advice to all you ladies, “early detection does save lives” so do your self exams, have your mammograms when you are due and consult your nearest health care professional if the need arises. Cancer is a daunting diagnosis and can affect out mental health in more ways than you can imagine, its ok to put your own needs above your family’s and its also ok to not always be strong because believe me you do have your down days. By nature, I am a very positive person and look on the bright side of life, my faith keeps me grounded and despite facing this cancer diagnosis I never once felt “why me” The Almighty planned everything for a reason. We have no history of breast cancer in my immediate family neither in my maternal family. You will feel overwhelmed and you may lose your well being but take it at your own pace, your mindset does play a huge part in this journey, it certainly did for me, I persevered and I am here telling my story. I missed some important milestones in my girls lives like being in hospital when my youngest turned 4 and several other important events in their school life, but it was the price I had to pay to get through this battle. My hubby, my girls, my siblings and my late parents were my strongest supporters and that made all the difference.

You are welcome to DM if you have any questions regarding my journey. By sharing my story, I hope I have given hope to all those traveling a similar journey.

May the Almighty protect you all and bless you with an abundance of Aafiyaa In Shaa Allah Aameen.

Love and duaas always

Hajira @hrns_cuisine