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To Treat or Not to Treat – My CLL

September 28, 2020
Image description: orange cartoon figure sat slumped on a box surrounded by question marks

The nature of Chronic Lymphocytic Leukaemia is that it is a build-up of varying symptoms which eventually lead to a form of treatment, whereafter ideally one’s bloods and symptoms return to close to normal and then the whole roller-coaster starts again.  The term remission is used for this period, but unlike other cancers, this remission will never lead to being cured.  All it does is start the “active monitoring” AKA Watch & Wait, Active Surveillance or Watchful Waiting) phase again. I have been told for 11 months that treatment was imminent.

I have been referred to another Specialist who is running the new trials for upcoming forms of treatment, who I had been informed would determine which form of treatment I would be put on.  After a year of “imminent” the surety was welcome and I was looking forward to the appointment.

After the meeting with the Specialist, having 12 test tubes of blood taken (I said they could have six extra to store in the tissue bank for medical testing/experimentation in order to help uncover future forms of treatment), and having sat around for two hours which did not do any favours for my chronic pain, I left the hospital.  I promptly burst into panicked and heaving tears in the car ride home.  My new Specialist, who was Registrar under my former Specialist, has now stated that he may not put me forward for treatment yet.  It’s all up in the air again. 

You may be reading this thinking, hang on a minute, she doesn’t need chemo straight away, what’s so bad about that? That is good news, surely?  I understand that reaction, it is what my employers said to me.  But that response doesn’t comprehend the mental preparation it takes to accept chemotherapy will be required and the fear of an uncertain future that cannot be planned when there is no firm course of treatment in place and the advice keeps changing from one hospital visit to the next.

Imagine you have been told that you will be needing chemotherapy, imminently, for 11 months.  Imagine a pandemic happened which put your chemotherapy treatment off, not because it wasn’t needed but because it was too dangerous to give during the pandemic.  Now imagine that after 11 months this advice is turned on its head and you are told that said treatment is required but that it will be delayed.  Not yet, the Specialist says.  Not yet, we must do more testing, you are young, and we don’t want you to start treatment if we can at all in any way delay it.  Imagine the confusion this causes.  Imagine never being able to plan more than the next appointment, four weeks, ahead.  Imagine being told this whilst the pandemic is again worsening and we head towards winter, with its increase in colds, influenza and other transmittable diseases.  Imagine knowing from experience how vulnerable you are to such things, and not knowing if you can get your usual vaccinations because you don’t know what or when chemotherapy may be advised.  Imagine feeling the only safe space is shielded in your house, potentially for years.  It’s been seven months already.

One of the side effects of my shifting situation and changing medical advice is that I am left feeling like everyone I have spoken to about my condition and the situation will see me as a liar.  I’ve been told in the past that I exaggerate, make things up, must be wrong about my own experience, am attention-seeking, it is not the way people understand cancer to be so it must be untrue.  I had the same thing happen when I talked about the side effects of medication I am on.  I generally only write the absolute truth in my blog and am very reluctant to open up in person.  People may think they know, but only m’Sooterkin™, parents and twin sister really do.  Not only do I not feel I will be believed but I also don’t want to burden them. My mental health is constantly in flux. The conflicting advice I have received is from two Specialists who are both highly regarded in the field.  One trained the other, and the other is a leading figure in research into the condition.  I left that appointment fearful.  I left knowing that I would be shielding until there is a vaccine for the coronavirus that has been taken up by most people in England, and until the pandemic is firmly under control.  I left understanding the only reason I would be given treatment would be if the risk of death from CLL was worse than the risk of death from exposure to the virus.

Most people diagnosed with CLL are over 60.

There are a limited number of treatments that can be used with CLL and if you have been treated with one once you cannot be treated with the same treatment again.  I was diagnosed at age 42.  There is a possibility that if I start treatment now, I will run out of forms of treatment, although it’s hard to know as who knows how long I would return to watch and wait for after the first, second, third or fourth treatment.  CLL is incurable, you can go into remission, but you will never be free of it.  The leukaemia will be present for the rest of however long my life turns out to be.

I need to keep my employer updated even though I am working at home on reduced hours.  I needed to adjust my thinking after this appointment, just to be able to cope with this constant state of unknowing and to try and convey that to those who are supporting me in this.  I stopped thinking about treatment being “put off” or “delayed” and am trying to think of it as “pushing back” day by day, week by week, as long as possible until the Specialist decides it cannot be pushed back further.  I am being monitored every four weeks.

When one has a chronic condition one is never cured, just maintained.  We are fed the line that medical conditions and treatments are linear and chronological.  We are diagnosed, we are assessed and treated, we are cured/in remission/dead.  In reality that is not the experience of a person with a chronic condition, and it is so difficult to get out of that mindset.  Even those of us living with chronic conditions find our minds stuck in that mentality.  The ideal of the model of an illness or condition is based on an acute experience, not chronic.  We do not learn about neither are we taught to understand a chronic condition, or dis-ability.

The experience of a chronic condition needs to be a fundamental part of our understanding of how the medical model may be applied to treating people.  Chronic conditions need to be understood in a holistic context, as they affect far more than merely the condition may suggest.  Mental health is tied directly into living with a chronic condition.  At present, the way in which society addresses chronic conditions is counterproductive.  I have lost friends who do not understand chronic and would rather label me a liar than try to understand or even give me the benefit of the doubt as someone who has lived with chronic conditions for 37 years and counting.  Thankfully, the vast majority are incredibly supportive, and even if they don’t understand they don’t judge or mistrust me.

I am left confused, hurt and triggered into my clinical depression again.  I understand why.  I know that needs to change.  In the meantime, all I can do is adjust my own way of thinking and hope others do the same.

From → Autobiography, health

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  1. Shielding-10 months inside | fromthemindoftinapj

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