JS Kicking Cancer’s Ass Theme 1 of 13: The Paralysis

Catch-22

Would you rather?

a) have stage four breast cancer that will kill you in five years? It has metastasised to your spine but you keep your ability to walk

or

b) be cancer free but become paralysed from the waist down. And as a result of a botched cancer treatment you will live with debilitating pain for five years

A catch-22 is defined as a paradoxical situation in which there is no good solution possible because of the way in which the factors of the solution relate to each other. The term was coined by Joseph Heller, who used it in his 1961 novel Catch-22.

Choosing between having stage four breast cancer that has metastasised to your spine but keeping the ability to walk or being cancer free but paralysed from the waist down is a catch-22 if ever I heard one.

When my mum was diagnosed with stage four breast cancer on Friday June 15, 2012, her oncologist recommended chemotherapy followed by a mastectomy then radiotherapy as her treatment plan. After eight rounds of chemotherapy my mum had a mastectomy in December 2012. The surgery took over seven hours yet we had been initially 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 originally 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.

After the chemotherapy and mastectomy, my mum then had radiotherapy to target the cancer that had metastasised to her spine.

So here’s the thing about breast cancer:

October 13 is Metastatic Breast Cancer Awareness Day. It is a day meant to bring understanding to the most serious form of the disease. Many people don’t realize that breast cancer itself does not become deadly until it metastasizes — or spreads outside of the breasts. Metastatic breast cancer (also called stage IV or advanced breast cancer) is not a specific type of breast cancer, but rather the most advanced stage.

I do not know why but for some reason whenever someone beats late-stage breast cancer, when it comes out of remission it always kills them. It happened to my mum and it happened to the mums of my friends Adelle and Mumo. I do not know whether late-stage breast cancer coming back as a killer is a medical fact, but it is what I believe. You can read Adelle and Mumo’s The Mother Of All Losses posts in the links highlighted under their names.

So after 25 radiotherapy sessions in January 2013, the scans showed that my mum was cancer free. We were so damn excited. We thought we were finally over the hill. We thought my mum would live a beautiful, cancer free life.

How wrong we were.

A year or so after the radiotherapy my mum started limping as she walked. We did not think much about it at first, but it did not improve as the days went by and with time she opted to go to India for a PET scan. She was worried about a number of things, one of them being that the steadily worsening limp meant that the cancer was still in her spine, even though the tests were saying otherwise. She went to India in May 2014 with her sister and the tests done there confirmed that she was indeed cancer free. Meaning she did not get any answers as to why the limping was getting worse as the days went by. She came back home later that month, accepting that she will just have to walk with a limp for the rest of her life.

Things did not get better and with time my mum needed a crutch to help her move around because the limp was becoming more and more of a challenge. My mum drove a manual car with no power steering, and for a while she was still able to drive it after she got back from India. But when she moved from needing one crutch to needing two crutches driving became impossible. This must have been incredibly difficult for my mum because she had been driving since she got her first car in 1989 and she was an excellent driver. She made eight hour drives all by her damn self to our upcountry home look like it was nothing. Plus my mum was a social butterfly if ever I saw one. She was always up and about seeing people and doing shit, so for her to not be able to get in her car and go wherever she damn well pleases was an incredible loss to cancer for her.

With time my mum went from using two crutches on her own to needing assistance with the two crutches.

One day in 2014 my mum went to Kijabe Hospital to see a specialist about her legs. For as long as I live I will never forget the broken, defeated look on my mum’s face when she came back home from the hospital. My mum survived a very violent marriage and doing so made her a lot tougher than she was to begin with. She did not break easily so before that day I had rarely seen my mum cry (outside of being beaten by her husband), but when she came through the front door I could tell she had been crying hard and was trying even harder to stay not-crying. My immediate, panicked thought was that she had been told that the cancer is back. I remember asking her a few times what the problem was but she did not answer me. She just resolutely stared to the side, not looking at me as she took several deep breaths in and out. Eventually she said that she was told she is heading towards paralysis and there is nothing that can be done to stop it.

Not too long after that heartbreaking day a friend of mine came to pick me up for a jay-ride. When I got home I opened the door to see my mum on the floor being dragged with a bed sheet from the sitting room to her bedroom. I do not know if it helped or hindered that I was high at the time, but I do know that I did not immediately understand what was happening. Back then I used to smoke cigarettes and I had finished a couple just before I walked into the house, confident that she was still in the sitting room watching TV. So when I saw her right in front of the main door my biggest worry at that moment was that my mum would smell the smoke on me and confront my ass. But now when I think about it, cigarette smoke must have been the furthest thing from her mind. She was probably puzzling over how she had taken herself to the sitting room to watch TV a few hours before only for her legs to fail to take her out of the sitting room a few hours later.

I was not there for this, but my aunt told me that when my mum was ready to go to bed she tried to lift herself from the couch but was unable to do so. She tried again and again and again, failing each time. She then changed tact and slid herself off the couch before attempting to crawl from the sitting room to the bedroom. Our sitting room had two stairs that you needed to climb to reach the dining room. My mum only made it to the base of those two stairs before she no longer had the strength to crawl any further. Those two little stairs were her undoing. It was then that my aunt came up with the idea to use a bed sheet to move my mum across the house. Together with my mum’s husband, they positioned my mum on the sheet and proceeded to drag her to the bedroom. Once they were in the bedroom I joined in to help heave her onto the bed.

That was the last day my mum ever had any use of her legs. I am deliberately not saying that was the last day she ever walked because by then she was not really walking. It is more accurate to say she was hobbling about on crutches.

I am usually pretty good when it comes to days and dates, but I remember neither the day my mum went to Kijabe Hospital nor the last day she ever had any use of her legs. All I know is that both days were in September 2014. The Kijabe Hospital visit was in the middle of the month and the last day she ever had any use of her legs was towards the end of the month. I am no therapist, but my theory is that those two days were incredibly traumatic for me and my brain was unable to process the trauma so it blocked out/did not register the dates.

Sometime after the diagnosis at Kijabe Hospital my mum went to see her oncologist. I only know of this visit because I had a conversation with her oncologist about it the following year. She revealed that my mum being told she was heading towards paralysis and there was nothing that could be done to stop it devastated her. That was the exact word her doctor used: devastated. Five years later and that word still haunts me.

I am a logophile so to me synonyms are not always interchangeable as no two words are weighted the same. When my mum learnt that it was not long before she would be paralysed from the waist down, she was devastated. To me that is a very weighty word and the only other word that feels like an equivalent synonym is destroyed.

Do you know what it means to be devastated? Have you ever been devastated?

Imagine needing to wear adult diapers for the rest of your life. Imagine needing someone to clean you up after taking a shit in your adult diapers for the rest of your life. Imagine needing to ask someone to check if you have shit your adult diapers because you can smell that you have even though you cannot feel that you have. Imagine grappling with UTIs for the rest of your life because the bacteria that lives in the faeces in your adult diapers easily travel up your urinary tract. Imagine grappling with urine burns for the rest of your life because day in, day out you piss yourself in your adult diapers. Imagine needing to use a catheter for the rest of your life. Imagine needing to always hide the catheter by taping it to your body under your clothes whenever you have company or need to leave the house because it is embarrassing.

Now imagine not being able to get out of bed unless someone helps you do so. Imagine not being able to turn in your bed as you sleep at night unless someone helps you do so. Imagine not being able to shower unless someone helps you do so. Imagine not being able to get dressed unless someone helps you do so. Imagine not being able to move from point A to point B unless someone helps you do so. Whatever fucking thing you can think of, imagine not being able to do it unless someone helps you do so.

Now imagine that your last born child, your only son, is leaving home to study abroad but you cannot see him off at the airport. Imagine that your second born child is moving out of home for the first time in her life but you cannot help with the move. Imagine that your firstborn child wins a trip to Dubai for two but you cannot go with her because you are wheelchair bound and the logistics of travel are impossible. Imagine that your beloved mum dies suddenly upcountry and you cannot just get up and go home like the rest of your siblings can.

Though we never had a conversation with my mum about this, I am confident that the paralysis was the second most difficult aspect of the cancer. I can put money on the table that it was second only to the pain.

In the conversation with my mum’s oncologist she revealed that my mum realising the impending paralysis would make her incontinent devastated her. Coming to that realisation destroyed her.

So I ask again, do you know what it means to be devastated? Have you ever been devastated?

Let me categorically state that I am not trying to dismiss anyone’s struggles by asking that. What I am saying is that my mum lost her hair, then a breast – both widely acknowledged as symbols of womanhood – and then her ability to walk. Just think about that for a minute. How many of you would not only have had the courage to go on, but to go on with laughter, grace and beauty? Not me.

My mum is/was the most spirited person I know so becoming paralysed from the waist down is one of the most heartbreaking things that happened to her. Needing someone to clean her up after she involuntarily defecated herself was especially difficult to make peace with. She told me time and time again that it made her lose her dignity. It got better with time but 2014 and 2015 were incredibly painful years and till this day I still get triggered by seeing adult diapers and wheelchairs.

Unsurprisingly, life changed for the rest of us as well. Remember those two little stairs that my mum could not crawl up on the last day she ever had any use of her legs? Well we had to get a carpenter to build a ramp so that we could wheel her up and down the sitting room with ease. If we were going out to eat as a family we could only go to establishments with wheelchair friendly facilities. When my sister and I were moving out we could only consider houses on the ground or first floor because anything higher than that would make it difficult for my mum to visit us.

On June 1, 2015 my mum was admitted to Aga Khan Hospital because of the pain. I remember the exact date because it was the day I got my Monroe piercing. I called my mum when I got home and she sounded sadder than I had heard in a long time. In fact the last time I heard her sound that sad was when she was told she was heading towards paralysis and there was nothing that could be done to stop it. The doctor she was seeing at Aga Khan for pain management confirmed to her that the doctors at Nairobi Hospital fucked up her radiotherapy because:

1. 1. They did not tell her there was a high chance that the radiation would leave her paralysed.
   2. The dosage of the radiation was too high that it practically charred her spine.
   3. The dosage of the steroids they gave her was not high enough.

Getting that confirmation of something she had long suspected was one of the saddest days of my mum’s life. When I called her the pain in her voice was so acute and I felt it so deeply that I could not go to work the next day. I called in sick and stayed at home feeling bad for myself and mad about the whole situation for a few hours before going to visit my mum at the hospital.

Sometime after the confirmation from the doctor in Aga Khan I called her oncologist to ask why they would fuck up my mum like that. For the life of me I could not understand why they would subject her to a treatment that could potentially paralyse her without letting her know that. She said that my mum suffered a spinal disk fracture (or something like that, I really do not remember) when she gave birth to my sister, and that the fracture was unable to withstand the radiation. During that conversation is when she revealed that my mum being told she was heading towards paralysis and there was nothing that could be done to stop it devastated her. Whether or not the fracture was really the cause for the paralysis is immaterial to me because at the end of the day my mum was not told that there was a chance the radiation could paralyse her.

We had a conversation about it later on:

Me: If you could do it all over again, would you still do the radiotherapy?

My mum: No

Me: But mum that means you would still have cancer in your spine … what if you ended up dying before the five years the doctor guesstimated were over because the cancer continued to spread?

My mum: I know the radiation made me cancer free giving me more time with my children, but look at what it took from me. Look at the quality of my life. I have lost my dignity Lwile

So I ask again, would you rather?

a) have stage four breast cancer that will kill you in five years? It has metastasised to your spine but you keep your ability to walk

or

b) be cancer free but become paralysed from the waist down. And as a result of a botched cancer treatment you will live with debilitating pain for five years

I do not know about you, but I would rather have even 1 year with cancer before I die from it versus having 10 years without cancer but I am paralysed from the waist down.