October 13th is Metastatic Breast Cancer Awareness Day. It is a day meant to bring understanding to the most serious form of the disease. Many people do not realise that breast cancer itself does not become deadly until it spreads outside of the breasts.
In honour of Metastatic Breast Cancer Awareness Day that was yesterday, today’s post focuses on the disease that killed the love of my life.
On Friday June 15, 2012 my mum was diagnosed with stage four breast cancer that had metastasised to her spine. Breast cancer stages are usually expressed as a number on a scale of 0 through IV, with stage 0 describing non-invasive cancers that remain within their original location and stage IV describing invasive cancers that have spread outside the breast to other parts of the body.
As per WebMD:
The stages are the number zero and the Roman numerals I, II, III, or IV (often followed by A, B, or C). In general, the higher the number, the more advanced the cancer. But there’s more to it than that.
Stage 0. The cancer has been diagnosed early. It started in the breast ducts or milk glands and has stayed there. You’re likely to hear or see the words in situ, meaning “in the original place.”
Stage I. Starting at this level, breast cancer is called invasive, meaning it has broken free to attack healthy tissue.
- IA means the cancer has spread into the fatty breast tissue. The tumor itself is no larger than a shelled peanut, or there may be no tumor.
- IB means some cancer cells, but just tiny amounts, have been found in a few lymph nodes.
Stage II. The cancer has grown, spread, or both.
- IIA means the tumor in the breast is still small, if there’s one at all. There may be no cancer in the lymph nodes, or it may have spread to as many as three.
- A stage IIB breast tumor is bigger — it may be the size of a walnut or as big as a lime. It may or may not be in any lymph nodes.
Stage III. The cancer has not spread to bones or organs, but it’s considered advanced, and it’s harder to fight.
- IIIA means the cancer has been found in up to nine of the lymph nodes that form a chain from your underarm to your collarbone. Or it has spread to or enlarged the lymph nodes deep in your breast. In some cases there is a large tumor in the breast, but other times there’s no tumor.
- IIIB means the tumor has grown into the chest wall or skin around your breast, even if it hasn’t spread to the lymph nodes.
- IIIC means cancer has been found in 10 or more lymph nodes, or has spread above or below your collarbone. It’s also IIIC if fewer lymph nodes outside the breast are affected but those inside it are enlarged or cancerous.
Stage IV. Breast cancer cells have spread far away from the breast and lymph nodes right around it. The most common sites are the bones, lungs, liver, and brain. This stage is described as “metastatic,” meaning it has spread beyond the region of the body where it was first found.
Before my mum was diagnosed with stage
four IV breast cancer, she had a lump in her right breast that she lived with for two years because the doctor she was seeing at the time told her she had no reason to worry about the lump. Can you imagine he told my mum the lump is like a bump in the road!? It was only when she began experiencing back pain in 2012 that she went to a different doctor for a check-up who then informed her she had stage IV breast cancer that had metastasised to her spine.
Every now and then I remember the two years my mum was misdiagnosed and I get all up in my feelings. I feel many things but most of all anger at the damn doctor for the damn misdiagnosis and at God for dealing my mum such a cruel hand because if her cancer was found earlier, maybe she would still be alive today. Instead she inadvertently wasted TWO YEARS believing she was fine because a doctor told her so, yet that was not the case. Which is why for the entirety of my mum’s five year battle with cancer she stressed the importance of seeking a second opinion because she relied on one doctor for two years and he fucked up. If she had gone to see another doctor about the lump, chances are the cancer would have been detected at an earlier stage meaning she would have had a higher chance of winning the battle with cancer.
There are many breast cancer treatments available, and according to WebMD, before your doctor recommends a treatment plan to you, they will consider:
- The type of breast cancer you have
- The size of your tumor and how far the cancer has spread in your body, called the stage of your disease
- If your tumor has things called “receptors” for HER2 protein, estrogen, and progesterone, or other specific features.
Your age, if you’ve gone through menopause, other health conditions you have, and your personal preferences also play a role in this decision-making process.
No matter which ones you choose, all breast cancer treatments have two main goals:
- To rid the body of as much of the cancer as possible
- To prevent the disease from coming back
Following her diagnosis, my mum’s oncologist recommended chemotherapy followed by a mastectomy then radiotherapy as her treatment plan. She was also on a hormone therapy treatment plan as for the entirety of her five year battle with cancer my mum was taking Tamoxifen, a drug used to prevent hormones, especially oestrogen, from fuelling the growth of breast cancer cells.
To undergo chemotherapy my mum had to be fitted with a chemo port. A chemo port is a small, implantable reservoir with a thin silicone tube that attaches to a vein. The main advantage of this vein-access device is that chemotherapy medications can be delivered directly into the port rather than a vein, eliminating the need for needle sticks. This procedure is done with the aid of a local anaesthetic which helps reduce the pain or discomfort of the procedure.
My mum started chemotherapy immediately after her diagnosis. Two weeks after the diagnosis I had my university graduation on June 29th and my mum went out of her way to make it absolutely special despite having just started chemo.
The day after my graduation my mum undid her weave as she wanted to go to the salon. She had installed it before her diagnosis and wanted a change now that the graduation ceremony was over. Her hair fell off with each cornrow she undid. She was so shocked that she called me to her room to witness. We were all taken aback by the immediacy because it had just been one chemo session. She had this look of amazed distress on her face, like she was about to laugh and cry at the same time.
My mum hated chemo. HATED HATED HATED!!! And from what I saw with my mum and have heard from others, chemo is likely the toughest part of one’s battle with cancer. My mum was the strongest person I know but chemo really took its toll on her. She would go to the hospital in the morning for chemotherapy and come back home later in the day. The day of the chemo session never gave her any trouble. It was two to three days later that the chemo demons would show their ugly face. My mum would spend days in bed with a bucket next to her as she was constantly throwing up, yet she had nothing really to throw up as she was unable to eat on those days with the chemo demons.
Typically my mum could not stop talking. She was my favourite chatterbox. During her treatment she was always on the phone with her support system. But on those days with the chemo demons there was absolute silence in her room. A cousin of mine remarked that is how she knew my mum was unwell as she was not on the phone. Chemo is difficult, painful, exhausting, isolating and ugly. When my mum’s cancer came back in 2017 she was highly reluctant to do chemo as she could not imagine going through that difficult, painful, exhausting, isolating, ugly treatment while paralysed.
Eight chemo sessions later, my mum had a mastectomy in December. The surgery took over seven hours when we had been informed it would take much less. That was my first experience with a loved one being in surgery. I did not know that more often than not the wait time is longer than initially specified. It was a harrowing experience, especially for someone like me who is a naturally anxious person. I kept thinking that she had died and the doctors were unsure of how to give us the news. But my mum was a warrior queen and pulled through.
I do not remember much about the radiotherapy so I have little to say on that front. What I do know is that the doctors in charge of the procedure fucked things up and ended up paralysing my mum from the waist down. The botched radiotherapy damaged the nerves in my mum’s spinal cord resulting in a Spinal Cord Injury (SCI) which led to my mum’s paralysis as well as the chronic pain she grappled with for years. The paralysis may have devastated my mum, but it was the chronic pain that made her want to give up the battle with cancer and die.
Cancer cells tend to grow fast, and chemo drugs kill fast-growing cells. But because these drugs travel throughout the body, they can affect normal, healthy cells that are fast-growing, too. Damage to healthy cells causes side effects, and according to the American Cancer Society common side effects of chemotherapy are:
- Hair loss
- Easy bruising and bleeding
- Anemia (low red blood cell counts)
- Nausea and vomiting
- Appetite changes
- Mouth, tongue, and throat problems such as sores and pain with swallowing
- Peripheral neuropathy or other nerve problems, such as numbness, tingling, and pain
- Skin and nail changes such as dry skin and color change
- Urine and bladder changes and kidney problems
- Weight changes
- Chemo brain, which can affect concentration and focus
- Mood changes
- Changes in libido and sexual function
- Fertility problems
One of the first side effects my mum encountered was hair loss and unfortunately for my mum her hair never grew back. She lived for four years after she finished chemotherapy but her hair just never grew back in those four years. My mum encountered almost all of these side effect, but not all of them were as a result of chemotherapy. Some, like nerve problems and bladder changes, were as a result of the botched radiotherapy.
When doing research for this post I came across the term ‘5-year survival rate’. I always wondered why my mum’s oncologist guesstimated that my mum would have five years to live, but turns out it is a thing. According to WebMD, the 5-year survival rate shows how many people live for at least 5 years after being diagnosed with breast cancer. It’s based on the stage at the time of diagnosis. This rate is only an estimate, and some people will live much longer. The lower the stage, the better the chances of living longer.
- Stage 0: 100%
- Stage I: 100%
- Stage II: 93%
- Stage III: 72%
- Stage IV: 22%
My mum had a 22% chance of living for at least five years. 22!! Wow!! I have always known that my mum was a warrior queen, but knowing that she lived for 5 ½ years after her diagnosis and there was only a 22% chance of doing so … just call her Princess Diana of Themyscira. I have said many times that my mum was the strongest person I know and during her penultimate stay in hospital I asked her where she draws her strength from. She replied that she can never give up on her children. It endeared me how she pronounced children. Shoodren, in full Kikuyu glory. Lol.
My mum was a warrior queen who fought like hell and lived for 5 ½ years after her diagnosis despite there only being a 22% chance she would do so. Sadly she lost her battle with cancer on December 13, 2017 at 1:10 a.m. but even the battles lost are still worth telling.