Updated: Apr 2
This week's blog comes from my friend Charles who I've come to know during lockdown. However, without asking questions or his openness to share, I would never have guessed what he has had to deal with for so many years. Charles was diagnosed with a pituitary adenoma in 2015. Today, he's sharing his life with us in this candid interview and describing what it's like for him, both physically and mentally, living with a tumour.
In his own words:
My name's Charles Holt, I'm a 28 year old game enthusiast from the UK. Currently doing my degree in English Literature. Proud owner of a pizza oven.
1) Hey Charles, how are you?
I'm not too bad, I've had a nice Christmas and the company I've had during lockdown hasn't been too bad. Things could definitely be worse.
2) How are you really?
In a general sense, pretty bad. I've taken a few really big hits in the last few years. One of which being the subject of this interview but I've also had to deal with a big death in the family from cancer. The other being of course the deterioration of my physical health over the last few years and especially since we went into lockdown.
3) How do you feel about talking about both your mental and physical health in this interview today?
I'm actually pretty open about my illness. There are some parts that I obviously don't share openly with any Tom, Dick or Harry. But, in general, I find it's better to openly broach the topic. Today I'll talk about every aspect of the illness and how it affects me both physically and mentally.
4) Do you think it’s important for people to educate themselves on physical and mental illnesses, even when they haven’t experienced them for themselves?
I think education is a wonderful tool. I think education on mental health is definitely something that should be more widely available, as the stigma blanketing it is still very much there, even in modern society. I think, however, that empathy is something that seems to be missing from a lot of people's emotional tool belts. You don't have to learn every single aspect of every illness in order to better understand me and anyone else suffering. Sometimes just understanding that something is wrong and acting in a respectable manner is all we need.
5) When were you diagnosed with a Pituitary Adenoma?
I was diagnosed in October of 2015. I remember exactly what happened. I was beginning a 14 hour shift at work and about 15 minutes in I got a phone call from my mom. She had just received a letter saying that the recent blood test had come back and the doctors believed I had a pituitary tumour. I was stunned for about 10 minutes and then continued my shift as if nothing had happened.
6) For anyone who doesn’t know, what is a Pituitary Adenoma?
It's better to describe it as a pituitary tumour. It's an abnormal growth of cells situated on a gland just behind your eyes. A lot of people are unaware of the pituitary gland so I sometimes describe it as a brain tumour. This just prevents me from explaining the role of the pituitary gland to everyone. The gland however is connected to your brain by a stalk. While it is technically a part of your brain, they do not medically diagnose the tumour as a brain tumour. There are multiple types of pituitary tumours, mine is specifically known as a prolactinoma. The tumour is made of cells that produce a hormone called prolactin. This is the drug that mothers produce when they begin to breastfeed and stimulates the production of milk. To answer a question that may come up, yes, I can produce breast milk.
7) What were the first signs for you that something wasn’t right?
So, I think the first thing I noticed was when I moved to university, I noticed a large decline in my sexual health. I had been quite active up until that point but I'd definitely started to notice that my "appetite" had begun to decrease. However, it was not until I was maybe 21 or 22 that it had begun to completely disappear. I was dating someone at the time and I had become completely unable to perform sexually. I would still have romantic thoughts about them and would actively want to have sex, however, the physical aspect had completely broken down. I knew something wasn't right but a young man in his twenties cannot admit he can't get it up. So I never told anyone about it. The next symptom was painful breast tissue, and eventually I began lactating and later bleeding from my left nipple. Other symptoms included damage to my peripheral vision, nerve pain in my feet and joint pain. It took about a year of tests and doctors appointments, almost two years after my loss of libido, to finally get a diagnosis.
8) Has the tumour diagnosis affected your mental health in any way?
The tumour itself causes depression, this is due to the hormonal imbalance taking over your body. So initially I believed I had a severe depression and began taking anti-depressants. However, outside of this I have issues with body image, masculinity and low confidence. Recently, my sister-in-law passed away from cancer, she had struggled for 2 years against an unrelenting adversary that from the start we knew she would lose against. I think when she died was when it finally dawned on me that I truly have an illness. I began having anxiety about my own mortality and how I have, in essence, had my twenties stolen away from me.
9) Other than mental health wise, what impact has the tumour diagnosis had on your life?
I struggle with my energy levels and motivation, this is due to my low thyroid. I used to feel so tired that I would not go out with friends or socialise regularly. I would go home and sleep or play video games. At times I felt very isolated coming to the realisation that I in fact had very few friends. It is only very recently that I feel I actually have a group of friends.
I've not had a relationship in six years, this is due to a multitude of things. I keep telling myself that I would be burdening someone else with my illness and health issues. But the reality of things is that I don't have the confidence anymore to actively look. It's a strange cycle of self-destruction. I have always eaten my feelings even as a kid, so I deal with my emotions through eating. This has led to weight gain and then further loss of confidence. Repeat for 6 years. This has now been exacerbated by the fact that my body no longer produces enough thyroxine, so weight gain becomes even easier.
10) What treatment do you have for the tumour?
The treatment of the tumour is mostly through medication that shrinks the tumour and prevents its growth. One of which is the regular consumption of a medication called Cabergoline. This is a dopamine receptor inhibitor, I am not going to pretend I know what that is, but this attribute works against the growth of the tumour. Another more recent addition is Lanreotide, which I get through monthly injections into one of the large muscles in my buttock. This is perhaps my least favourite. I also have to regularly take Levothyroxine, this is because the tumour inhibits my thyroid function. Finally, my last medication is testosterone gel, which I apply to my thigh once per day. Similarly to the Levothyroxine, this is because the tumour inhibits testosterone production.
11) Have you had to cope with any side effects due to the medication?
So they have me on a medication called Cabergoline to chemically shrink the tumour. I don't think I can describe any specific side effects other than a general overwhelming feeling of shitness. I usually get some kind of headache radiating from my sinuses, like they have been filled with expanding concrete. There's also the mental fog, sometimes I have to wade my way through this kind of mild confusion to try and find out what I want to do, or what I was trying to think. Sometimes this presents itself as completely forgetting past conversations or suddenly arriving somewhere forgetting how I got there. A recent addition is a monthly injection I now get in my buttock called Lanreotide. This one was a bit of a shock, causing stomach cramps and gastro-intestinal distress. I'd say it felt like the physical representation of the Xenomorph from "Alien" tearing out of my abdomen. I have also been prescribed testosterone gel and Levothyroxine. These two do not give me any kind of side effect but it would be better to describe them as drugs that bring me as close to a normal existence as possible. Without them my physicality really suffers. I have been unable to bring myself to leave the house as I feel so physically drained.
12) If you’re having a difficult time due to the pituitary tumour or the medication, is there anything anyone else can do to help you through that time?
Get me some painkillers and a really cold drink. When I get the headaches they can be mind-bendingly awful. I remember very early on, waking up at 4am with a migraine that made me want to claw out my eyes. The only thing that I can really do during one of these is just try and pass out.
13) For anyone who has never experienced depression, how would you describe it?
I think it varies from person to person and in severity. For me, it was a feeling of hopelessness, like nothing mattered, not me, not my family nor friends. I felt like what I imagine a zombie to be like. I wandered around aimlessly, without a purpose, eating and sleeping, going day to day without joy or passion. I'm also what my mother would describe as a 'smiling depression'. I will smile and joke, tell you I'm okay, but then I would go in my room, sit in squalor and rot away without anyone knowing.
14) How has depression impacted your life?
Weirdly, I would say it has made me more empathetic. I'd like to think I also came out the other side a more accepting and better person. I think when you experience something and gain an understanding of it, you appreciate how shit it is for someone else. I still have bouts of it, however they are definitely fewer and luckily I can shake it off after a day or two. But that sullen feeling still hangs over me from day to day. Although, I ask myself whether today is going to be a bad day a lot less recently. I still have a habit of not looking after myself properly.
15) Do you have any particular coping mechanisms to help yourself through a difficult mental health day?
I try to keep busy or distracted. If I leave myself with my thoughts they tend to become intrusive. I think the last bad bout I had was Christmas last year, just after my sister-in-law died. I was doing something around 75 hours a week at work just to stop myself from thinking. Though I am nowhere near as bad as that now, I have a tendency to watch any old crap on YouTube to keep myself distracted.
16) What is your hope for the future with regards to the tumour?
I am hoping that the pandemic dies down with the introduction of a vaccine to have it excised once and for all. I had a consultation with a surgeon, just before COVID arrived in the UK, about having the tumour removed. However, it has not been brought up since which is understandable, considering how under pressure the NHS is right now. So, I aim to stay the fuck indoors so I can have part of my brain cut out.
17) What is your biggest personal goal mental health wise?
I want to start taking care of myself more. I tend to just allow myself to live in filth or not shower. I think this is because, at the moment, my self-worth is pretty low. I don't want this to be misconstrued and I don't want to offend the body positivity movement. But for me I want to lose weight, I want to feel comfortable in myself again. I already suffer from physical issues and the excess weight only exacerbates some of them. So, for my self and my health, I would like to tackle my compulsive eating.
18) Without referring to your diagnosis, how would you describe yourself?
Chill as fuck... though sometimes confusing chill for being a lazy bastard.
19) If someone is reading this today and is struggling with their mental health but has not yet reached out for help, what would you like to say to them?
To everyone, I want to say that there is no shame in being ill. I felt shame and still do at certain aspects of my illness, despite the fact that none of it is my fault. However, do not mistake this for a weakness of character. It is very much the same as any other disease, it is insidious and cruel. Without the proper help from a professional it will cause a steep decline in your quality of life and may even end up in your death. So, how does that make it different from any other illness?
I also want you to know that things indeed do get better and given time they will.
20) How do you feel after answering so many personal questions?
Not too bad. I think talking openly is a very emotionally healthy thing to do. As a guy you get taught most of your life to bottle things up. That whole 'boys don't cry' mentality. It's healthy to talk about your feelings, it is not a sign of weakness nor something inherently gendered. So, to any young guys out there struggling alone, it's okay to tell someone how you feel.
Thank you so much Charles for doing this interview and being so candid. I hope that cycle of self-destruction and low confidence can break soon because I've only known you a few months and dude, you are an incredible human being. Look after you, you're important.
If you're reading this today and you're struggling with your mental health in any way, please REACH OUT. See a doctor, speak to someone you trust, or you can go to the 'support' page on this website where you'll find some useful contacts. There is help out there for you and you are worth helping.