Tag Archives: Shutting down

Chaotic Cancer: A Family Member’s View: First Chemo

Please be aware that some of the content may be triggering. Please take care 💚

This is my view of living with someone who has cancer as someone who has a mental illness. It is my personal experience of the chaotic cancer ride.

A milestone is the first chemotherapy session. It was something we had waited for, for quite a while after diagnosis, or so it seemed. We had a lot of cancellations and changes before the first session took place. Because if the chaotic nature of everything this has taken me some time to write.

Mum had to go to a specialist hospital in London for the first session. This was about an hour’s drive from where we live. It was tricky logistically with having to go up in the days before for blood tests and covid swabs. It was also tiring for my mum.

The stress of the first chemo was immense. It was all so sudden that it came together after all the cancellations and changes. The panic kicked in the night before mum had to go. I couldn’t sleep. I was scared. But I didn’t feel I could show it. I decided I needed to just push it all down. I couldn’t deal with the overwhelming feelings. I needed to just be practical. It was probably not the best idea but how I could cope.

Chemo for mum took a long time. They had trouble with her veins and other things. Plus having three different drugs meant it took all day. She was exhausted by the time she was done and home.

At first, after the chemo, mum didn’t feel too awful and then it hit. She wasn’t sick but felt it. She was very tired and this made her frustrated. Her mind often went blank. It was a difficult time to be at home. Life was just very stressful. I was struggling. I didn’t know how to describe my feelings or what was going on in my head. It was all extremely overwhelming. I didn’t talk to anyone really about how I felt as I didn’t have the words. I just said I was tired, which was true as well.

After the first chemo you think you understand what could happen from what you’ve been told but living it is so different. And if one more person tells us to think positive I think we’ll all scream.

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Chaotic Cancer: A Family Member’s View: Telling People

Please be aware that some of the content may be triggering. Please take care 💚.

Part of the whole cancer diagnosis and prognosis is the telling people all about it. It’s surprising some of the reactions that you get and the responses you feel as well. Some of the things that I’m going to write about are things that my mum has felt about telling people as well.

When it came to telling people about mum’s diagnosis, it was really hard. I didn’t want to cry on people. This meant I didn’t ring people with regard to the diagnosis. I rang one person when I told them about prognosis. I think with the diagnosis I blamed myself so much. I’d stopped self harming as part of the therapy I’d been having but for me, my thoughts made me feel I had to harm to stop people getting ill. Then mum got cancer. How could it not be my fault? I knew people would know I was evil.

Telling my best friend was the first person. She was amazing and the first thing she said before I’d even mentioned the above thoughts was “it’s not your fault”. She knows me very well and it was hard to see it. My belief in that statement wavers a lot still. My best friend has been an amazing support and checks in with me regularly. She’s not afraid to talk to me.

The reason I mentioned my best friend isn’t afraid to talk to me is that some people do seem to react after telling them by avoiding you or not asking the “how are you?” or “how is your mum?” questions. And I do understand this. Some people can’t deal with this. I get it. But that doesn’t mean its easy to deal with. Both me and mum struggled with this. Mum said she felt like she had something ccontagious that people needed to avoid. I felt the feeling of abandonment. The whole BPD abandonment. And it added to the whole “people know it’s my fault and hate me” thoughts. This was so hard to deal with and still is.

Another reaction is people tell you of their experiences as either a family member or a person who has had cancer. This can be useful but it can be scary too. It’s not something I’d want to change though.

Overall telling people is an exhausting experience. And sometimes even working out what order to tell people in is an issue too as you don’t know who will tell others before you get there. I thought it would be easier telling people about cancer than about my mental illnesses as its not so taboo but I’ve found that not to be the case at all. People are still scared to discuss cancer.

If you have any tips or thoughts on telling people, feel free to share in the comments or on Twitter, Facebook or Instagram.

“I’m Just Tired”: The Truth

Please be aware that some of the content may be triggering. Please take care 💚

I say to you I’m tired. And I am. I’m tired of life. I’m tired of my head. I’m tired of everything I cannot change. I’m tired of fighting.

I say I’m tired. And I am. But I’m hiding behind it. I’m not sure what I feel. I don’t have the capacity to know or understand my feelings so I’m tired will have to do as I’m too tired to work it out.

I’m tired. I’m exhausted. My body and mind don’t want to work. My head is thumping. My limbs are aching. Sleep doesn’t help. I want to be in bed. I want to give up. I want to hide away.

I’m tired. Of being a burden. Of being a failure. Of being a no good human being. Of being the worst of everything. Of always being the one who doesn’t know how to be OK.

I’m tired and I want to go to bed. But I don’t want to ever wake up. I don’t want to face the world anymore. I don’t want to feel anymore. I don’t want to exist anymore.

So yes I’m tired but it’s so much more.

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Chaotic Cancer: A Family Member’s View: Diagnosis

Please be aware that some of the content may be triggering. Please take care 💚

I introduced this series of posts in this blog post ➡️ Chaotic Cancer: A Family Member’s View: Intro. This post is about my mum’s diagnosis of cancer and some information and thoughts surrounding that.

My mum’s cancer was an incidental finding. We had no suspicions that she may have cancer. There were no obvious signs (though looking back we have picked some out). It was far off the radar. I don’t know if this made it easier or harder to deal with. I have no prior experience of anyone I know getting cancer. But it was tough.

Mum went into hospital before Christmas with an inflamed gallbladder. She had antibiotics and came home. About six weeks later at the beginning of February 2021 she had a reoccurrence of the inflamed gallbladder and so they decided to remove it in an emergency surgery. It was then that they found something. On her liver were lesions. Tumours. They took biopsies. Then we had to wait for the confirmation of cancer. They knew it was. It couldn’t be anything else. But we didn’t. So I grasped that tiny bit of hope. Hung on to it tight.

Within a week she was back for the results. It was, surprise, surprise, cancer. A rare one. Slow growing. Treatable. Neuroendocrine cancer. That’s what they told us then. There was still hope. But I dissolved. That day I sobbed for an hour. Mum was meant to be isolating after exposure to covid while on the ward but screw that, I hugged her. Then the guilt set in.

To understand this guilt means explaining that in my therapy I’d been working to stop self harming. I had been using as an OCD type compulsion to stop people getting ill. I’d been told it had no effect on them not getting ill. Then this happened. I’d made my mum get cancer. I even told my dad it was my fault. The guilt overtook me. I had ended the therapy by then ahead of a new group but all I wanted was to email the psychologist and tell her she’d made me give my mum cancer. Yup, totally irrational. Or that’s what I’m told. I bounce back and forwards still.

With the diagnosis came a lot of emotions. Emotions I didn’t understand. Emotions that were set to overwhelm me along with other people’s. So I pushed mine down. From the day after the diagnosis I didn’t cry for a long while. I threw myself into the practical. I didn’t feel anything. I totally blotted out my feelings. I had enough to overwhelm me with other people’s emotions. Those had a name though as people could tell me them. My own I can’t name.

So diagnosis was stage one of the whole cancer chaos. The start of the chaotic world it brings. And beginning it all in the midst of a pandemic has brought challenges as well. Mum was on her own for the diagnosis as at our hospital appointments have to be attended alone. I think that has hurt her a lot. I don’t know though.

So from diagnosis comes many more tests and appointments. These I will discuss in another blog post. I think I thought diagnosis would be the hardest part. How wrong I’ve been.

If you want to share any experiences, thoughts or resources feel free to use the comments or my Twitter, Facebook or Instagram accounts linked to this blog.

When Emotions Overwhelm

Please be aware that some of the content may be triggering. Please take care 💚

Last week after a while of not feeling anything or pushing emotions down I was suddenly overwhelmed with them. It is an experience I know many people with a mental illness feel at times, especially those who have a diagnosis of Borderline Personality Disorder (BPD).

I don’t understand my emotions most of the time. Identifying them is an extremely difficult thing for me. When they overwhelm me this is harder to do and harder to deal with as well. People will ask what’s wrong or what you’re feeling and not being able to explain it is so hard to deal with and seems to add something into the emotions that makes it all the worse. I feel I just want to be a “normal” person for a while.

Those with a BPD diagnosis find emotions are heightened. They are often described as being emotionally like third degree burns victims without an emotional skin. It’s like touching wounds when we feel emotions. The pain of them is strong and this can be felt physically in the body. And by god is it painful at the extremes. When most people would have a small emotional response, ours tends to be more intense or bigger. Therefore when a person without the diagnosis has an event that causes them extreme emotional pain, well for those who have a diagnosis of BPD it is just unbearable.

When the emotions overwhelmed me I just wanted to tear my skin off. I wanted to hurt myself to an extreme extent. I wanted to escape it all. Death felt like the best idea but I felt trapped as it wasn’t an option. This added to the distress. The hatred for myself is strong. It’s always strong but in that moment it was extreme. It was unbearable and I could not even work out what I was feeling.

This happens more often than people realise. A lot of the time I just hide away. My friends cope with a lot. I feel sorry for them. I hate what I do to them. They deserve better. I try my hardest to not inflict myself on them but in the moment it’s harder. This isn’t the healthiest way to cope.

I don’t have much advice for coping. Dialectical Behavioural Therapy (DBT) offers some skills for dealing with distress. These include the TIPP skills and STOP skills that are detailed in the images below. However it can be hard to remember to do this when the emotions are so high. It’s like they are blinding. It could be useful to let someone close to you know about the skills so they can remind you of them.

If you have any other tips for coping with overwhelming emotions then feel free to share in the comments or on Twitter, Facebook or Instagram.

Goodbye Time To Change

The mental health campaign Time To Change is closing at the end of March 2021. I’ve been involved with them at different times so this is my goodbye to them.

For those that don’t know, Time To Change is a mental health campaign started in the UK ten years ago. It’s a social movement, meaning it’s work is based on using those with lived experience to talk to others to raise awareness of mental health and mental illness. They have done this in many different ways, from holding events to helping people share their stories with those in power. It has also expanded globally in the last few years.

My first experience with Time To Change was asking them to look at a portrayal in a programme that made people with mental illness seem like attention seekers. They then asked me to write a blog post about this for them. It was one of the first pieces of writing about mental illness I had done. They gave me confidence to start my own blog up, sharing my experiences and thoughts.

In 2015 they sent emails out about a new event, Story Camp, that those with an interest in sharing their experiences about mental illness could sign up to, to learn about how to do it effectively. This included bloggers and media volunteers. I applied and never thought I’d be chosen to take part, but I was. So on 10th September 2015, I headed to London to take part in workshops and listen to others speak. The people I met were amazing. One is now one of my closest friends. Others inspire me greatly. I was too nervous to say hello to my biggest inspiration, Jonny Benjamin, but he was there talking to us all and I snuck a photo. I was in awe.

I carried on writing my blog and using their tips to improve. I signed up as an official Time To Change champion and this led to me becoming part of the local hub being set up in my home town. I did some training again with them, though becoming ill again meant I didn’t take part as much as I’d of liked.

So Time To Change has been at many different parts of me sharing my experiences. And for that I’m grateful. The training offered is high quality and the people I’ve met through them are amazing. I’ll miss having the opportunities they’ve offered and actually feeling valued by an organisation. They’ve validated me and many others.

While we are saying goodbye to Time To Change, we are not saying goodbye to the work they’ve done. It’s definitely made mental health less of a taboo. We still have much work to do with making people understand other mental illnesses as well as they seem to of accepted depression and anxiety. This will continue with those it has trained up and given confidence to.

So thank you Time To Change, and goodbye.

Found my notes from Story Camp 2015

Being Invalidated

Please be aware that some of the content may be triggering. Please take care 💚

“To invalidate means to cancel something or make it void, as if it never happened. In invalidate you see the word valid which means true or correct. When you invalidate something you are making it less true, less official, or less correct.” (vocabulary.com, March 2021).

The meaning above can be applied to things you experience. It can be caused by other people and events. It can make you question your thoughts, feelings, emotions, experiences and reactions. It can make you feel awful. And people sometimes don’t even realise they are doing this to you.

When you tell someone that what they feel isn’t justified or to just stop feeling that way, then you are invalidating the way they feel. You are telling them what they are feeling is not true and not correct. Yes, you may not have felt that way in that situation but everyone is different and that doesn’t mean that what that person is feeling is invalid.

It’s important we think before we speak. It’s what might feel like silly things that can have an effect on other people and cause them to feel invalidated and it can start when we are children. What we are saying may to us sound reassuring but it ccam invalidate the child. Saying to a child who is nervous about an exam that they shouldn’t be is invalidating. Instead saying you understand why they feel that way but you feel like they are well prepared so it should go well is acknowledging their feelings as valid while reassuring at the same time.

Some mental health professionals could also do with understanding the power of invalidation. Telling someone that what they are experiencing is minimal or not that bad can have lasting effects on everyone and especially those with a mental illness. It can cause them to deteriorate further. On my write ups from the psychiatrist appointments it would often say my self harm was superficial and it would make me try to cause myself more harm as I felt they weren’t taking me seriously. I’ve also heard of people with eating disorders who are told they are not thin enough being made sicker.

I know that although having a diagnosis can be a burden I felt it a validation for what I was/am experiencing. It made me feel that someone could see that something was wrong and I needed help. However this means professionals need to be careful about removing diagnoses from patients as it can add to invalidation. You are taking away the validation you gave them. There needs to be a conversation and careful explanation.

It is possible also to invalidate yourself as well. This is harder to stop doing, I know I do it a lot. It’s important for us to try and allow ourselves to experience our feelings and acknowledge them. This is easier said than done though.

So when speaking to anyone try to consider their feelings and not cancelling them out. We all need to think of how our words and actions impact on others.

The Return To Normal

In the UK we are starting to hear plans of how things are getting better and back to some kind of “normal”. This has brought up many feelings for myself and others. Here I thought I’d explore some of mine.

In all honesty the thought of going back to how things were before the pandemic and lockdown feels scary. I didn’t particularly like it then and I’ve become more of a home body now like I have done in the past. I don’t want to go out other than to walk the dog. I like being at home. I like being able to do the things I want to at home. I don’t want to go back in to shops that are crowded. I don’t want to have to go to places that I don’t know. I don’t want to socialise. I’ve become comfortable with this life.

I really want to keep the two metre rule in place. I feel its helped us to learn a little about personal space, something so many people weren’t good at before. I don’t want to feel people closing in around me. Part of this fear will also be because we’ve not been allowed to be near others so we’ve become hyper aware of avoiding people and it will be strange to go back to how it was before.

I also have quite liked the lack of expectations on me. I’ve not been expected to be sociable which I struggle with normally. I miss my friends massively, please don’t get me wrong, and I want to hug them but I’m terrified of the social interactions returning. I’m scared I’m not going to manage it at all. I’m scared I’m going to screw up all my friendships again, like I have in the past. I liked having a stress free birthday and Christmas.

Travelling is going to be hard as well. I struggled with public transport before the pandemic and I feel that any progress I was making has been torn away. I don’t feel I could use public transport for some time.

I’m also terrified of just the thought of people doing normal things. What if things aren’t as OK as it seems? What if people I love become ill still? I’m scared of losing people still. How do we know it’s OK?

So those are a few of my worries. I currently have to fight off the panic attacks linked to thoughts of things becoming “normal”. And will normal actually look the same as before? I’m not great with any change but this all feels so big. I’m scared and overwhelmed with it. I’m trying to just go by each reduction and not try to think too far ahead but it’s hard not to let things snowball in my mind.

I hope things will get easier for all of us. If you wish to share your thoughts on lockdown easing and any tips you think may be useful use the comments below or Twitter, Facebook or Instagram.

Breaking Up A Toxic Relationship

Please be aware that some of the content may be triggering. Please take care 💚

The fourteenth of February is a day everyone remembers and relates to their relationship with their partner. I’m no different except for me it marks the day I broke up my relationship with my ex, let’s call him J. It’s a bittersweet day and complicated in so many ways by the mix of thoughts in my mind.

My relationship with J was not a good one. We were introduced by a mutual friend. He was five years older, which doesn’t sound a lot but as I was seventeen and he was twenty two it did feel quite big. We had many laughs when we first met. To say there wasn’t a connection would be wrong, however much it now pains me. We quickly became an item and that’s when the issues started.

He very much wanted our relationship to become physical straight away. I didn’t due to some past issues. I tried explaining and he seemed understanding when we were talking via text. In person it was quite different. He made me many promises. Within a week they were broken and so was I.

I should of left him then. It sounds so easy so early on in a relationship. But I’d told him things I’d told noone else and boy did he know how to use that to get his way. And if that didn’t work then humiliation and force were his tools.

Now he wasn’t all bad. It sounds like I’m defending him but honestly there were things about him I liked and still do. He could be charming. He showed me a vulnerable side that liked to do cross-stitch which his nan had taught him. He loved his nephew. He could be funny. These things made me want to be with him. They made me feel lucky. Especially when he chose to open up about things to me. Maybe it was all manipulation but some at least felt genuine.

However there were areas where we clashed. Areas where he forced his will on me. Where he took away my choices. He told me I made him do this. I forced him to force me. Do I believe it? Yes, it still feels like I’m to blame a lot of the time. There may be small doubts but they are often erased.

During our time together my self confidence, what little I had as I was already mentally unwell at the time, was eroded. Any form of self respect was gone. He terrified me but I needed him. When he tried to persuade my friends to sleep with him I knew it was my fault. I’d pushed him to it. They showed me his messages. I still thought it was ok.

Eventually nine months in I had a sudden burst of feeling I couldn’t do this relationship anymore and when it came out he’d been successful in one of his conquests with another woman I saw it as an excuse to end the relationship. So on the fourteenth of February I ended it. I couldn’t do it face to face through fear. But I did it. I got all sorts of threats from him. I knew I would and I had my doubts over what I’d done. Noone else would ever love me, right?

I wish I could say he was out of my life after then. He wasn’t. He reappeared a number of times in different ways. He treated me in different ways from deep caring to painful incidents. He humiliated me many times and forced me to put myself in his control to avoid a friend getting hurt. It would be my fault if they did. He has periodically turned up over the last eleven years. I have very mixed thoughts about him.

So why have I written this piece? Because I know deep down this was not a good relationship. It hurt me a lot whether that was my fault or his remains to be seen though many say it was him. But I did end it. Somehow I found the words to say it was over. But it wasn’t a simple break up. And I think with many toxic relationships that is the same. The idea people can just walk away from these relationships is wrong. So much is tied up in them. Many thoughts go through your head. So if a relationship isn’t looking right please don’t think it’s simple for one person to leave the other. There is much more to it and sometimes one partner won’t let it go and can be threatening and manipulative. Please understand this.

For help and support with similar issues then you can check out Refuge in the UK. I’m sure there are similar charities around the world too.

N.B. Some people have called my relationship abusive. As you may have noticed I chose the term toxic. Maybe it was abusive. At times I say that. But my head hasn’t got around this relationship entirely. I know I’d call it abusive if anyone else experienced what I had.

I Don’t Have The Words

Finding words is difficult at a lot of different times and especially when struggling mentally. This is something at the moment that I’m finding is the case so we’ll see how this post goes. Good luck  to all reading.

Words come from many parts of ourselves. All our senses feed together into the brain and expect it to spit out the words that we need but sometimes it feels like it’s letting us down when we need it most; to tell others how we are feeling. This is definitely something I feel happens. I want to express how I’m feeling but no words come, especially if it’s an emotion. It’s frustrating as people say I’m clever and good at writing but I just don’t have the words for this part of me.

I know I’m not alone in struggling to find words for emotions and it is particularly something that can be associated with Borderline Personality Disorder (BPD) and part of the therapy for this (Dialectical Behaviour Therapy (DBT)) involves a section on identifying emotions. However this can still be difficult as it requires us to be able to find words for the sensations in our bodies and the events leading up to them. This isn’t always easy and I often can only use the words good or bad to describe the sensations.

Not being able to find my words leads to many difficult situations. I don’t feel I can ask for help when I don’t know how to describe what is wrong. I’m terrified of being misunderstood and it happens frequently when I do try to find my words. However it is difficult to sort these misunderstandings as I don’t have the correct words to make people understand how I’ve been misinterpreted. It makes for many difficult times. Often I will just allow myself to be misunderstood or I won’t try to explain in the first place.

Writing can sometimes be easier than actually talking. It often gives me a little more time to compose my thoughts and feelings into words. It’s often why I find phonecalls stressful and avoid them at all costs. This hasn’t been helped by many things during the pandemic being moved to phone appointments. Even face to face is easier as the other person has my body language to help them understand me.

Having a difficulty with finding words has effected my confidence in social and professional situations. I’m constantly in fear of being taken the wrong way or accidentally offending someone. It makes everything more stressful and I’d rather avoid situations than try and explain to someone my difficulties.

I’m still looking to find ways to combat my difficulty with finding words and would love to hear if you have found any. Feel free to share any ideas or your thoughts on the subject in the comments or on Twitter, Facebook or Instagram.