Tag Archives: Stigma

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

Please be aware that some of the content may be triggering. Please take care πŸ’š

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.

To keep up to date feel free to follow me on Twitter, Facebook or Instagram.

Chaotic Cancer: A Family Member’s View: Diagnosis

Please be aware that some of the content may be triggering. Please take care πŸ’š

I introduced this series of posts in this blog post ➑️ 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.

Chaotic Cancer: A Family Member’s View: Intro

Please be aware that some of the content may be triggering. Please take care πŸ’š

About six weeks ago (or longer, the days are all merging) my world was hit by the news that my mum has cancer. It’s something I’ve been dealing with on top of coping with my mental illness. Therefore I thought I’d use my blog as a way of recording how I cope (or not) with everything that comes from living with someone with cancer. And not just anyone living with someone with cancer but someone with a prior mental illness. I know bits will overlap with everyone who supports someone with cancer but there are bits that I think I’m finding harder due to my diagnosis. Maybe not… But this will be my way to explore it.

I’m planning to set this up on it’s own page of my blog so it will be together with other information or support as well. And it will all be in one place.

My plan is that I will be as honest as I can be. That I will look at the good, the bad and the ugly. This may mean there is triggering topics discussed so please be careful. As always I will put a trigger warning at the top.

So post one will hopefully be up shortly (once I’ve written it) but I don’t think I will keep these posts to a schedule as life is already chaotic. I also still want to write about other areas of mental health and illness too, this is just an add on.

As always if you want to share or ask questions feel free to use the comments or my Twitter, Facebook or Instagram accounts.

So It’s Been A Year…

Please be aware that some of the content may be triggering. Please take care πŸ’š

It’s been roughly a year since the UK went into a restricted state. We’ve been in and out of lockdown. Many things have never been back. Therefore I thought I’d reflect a little on the last year. Some things will be linked to mental health, others more general.

What I’ve Learnt

The whole situation has been a learning curve. I think everyone has learnt something about themselves and others as well as maybe other skills. Here are mine:

1. I need social contact

I’ve always found social contact difficult and overwhelming. I’ve always pushed myself to do things socially and I’m exhausted afterwards. But I’ve found I do need it. I have missed seeing people. Having the hugs. Being with my friends. Just hearing their voices (I struggle still with phone conversations). I can’t wait to meet them.

2. I need alone time

I’ve known this for a while but it has been confirmed with being stuck with the people I live with All! The! Time! I need quiet. I need to get away. It’s tiring being with other people. I think everyone needs alone time really, we all just differ on how much.

3. I can draw

Turns out I can draw. And actually practice does improve it.

4. Phone/video appointments aren’t a substitute for face to face

Obviously a lot of appointments changed to being either online or via phone. I’ve found these so hard. I feel like I can’t get things across as well as I do face to face (and I don’t feel I do that very well anyway). I feel people lose the ability to understand people as well when you take away the physicalness of being in the same room. Also technology has a habit of not working and making it all more stressful. (Although being able to have my cat with me during therapy was a positive).

5. You can’t make eye contact on Zoom

Someone pointed this out to me and its bugged me ever since because its true and no matter what I try I can’t change that. I hate eye contact most of the time but I also try really hard to make some as I know it’s expected. I should be happy therefore that I don’t have to make eye contact but instead it’s annoyed me. Yes, I’m a paradox.

What Scares Me

Along with learning many things, this whole situation has created many fears within me for the present and the future.

1. Fear people will get ill

I’ve always been scared of people in my life getting ill. It’s out of my control although I have gonw through many things that I believe have given me control. Logically it’s not true, mentally I feel to blame when people get sick. This was heightened once we really got into the reduction of social contact and lockdown (before that coronavirus didn’t bother me, odd I know). I was often in tears that something I had or hadn’t done was going to make those close to me ill. I was so strict with cleaning and washing hands, more than usual. I was terrified. I still am.

2. Going outside or into shops

I’ve always found being out and about anxiety inducing, especially on my own. I’m now able to walk the dog just me and him but otherwise I struggle. This has been heightened in these times even though I was forced to shop for my parents on my own. My anxiety was through the roof. Now the thought of going back in to shops without anyone or any restrictions in the future terrifies me.

3. The lack of restrictions

There will come a time when restrictions are gone. Yes it will be a positive in many ways but I don’t feel anywhere near ready for this to happen and I don’t think I will be for some time. Each time a restriction is eased I feel such a state of anxiety that I have panic attacks over it. The thought of things being “normal” is something I can’t comprehend yet.

Where am I at?

So overall I’m struggling mentally with everything. There is a lot of change currently and it’s left me unsettled. Large parts of lockdown have been a struggle but other parts have played into my comfort zones of hiding away from people. I’m very much a home body. People keep talking about holidays and that’s the last thing I want to do. Not going on holiday was a plus for me and now I have no excuse to stay home. I both want things to come back but others I want to stay as they are.

What are your thoughts on your current situation, wherever you are? Feel free to share in the comments or on Twitter, Facebook or Instagram.

Being Invalidated

Please be aware that some of the content may be triggering. Please take care πŸ’š

“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.

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 luckΒ  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.

Therapy 2021: Session 5

Date of session: 02/02/2021

Please be aware that some of the content may be triggering. Please take care πŸ’š

Today was my last session of individual therapy. This will be more of a thoughts on things post as there was not much content to the session to be shared. The main part of the therapy today was to do a screening for joining a trauma information group in March.

With the end suddenly happening (it was only mentioned last session, last week) I feel abandoned. I feel I have no support. I feel alone. They say phone the duty worker or crisis team. These are options I can’t do due to my home situation and the anxiety that means I don’t feel able to talk easily to staff I don’t know. Also I know that someone who mans the duty phone is someone I put in a complaint about and so I was removed from her care. She has since blatantly ignored me when I offered a hello when I saw her in the building of my community mental health team and turned her head away from me. She has also said some things for which the complaint was made. I’m terrified it would be her that answers. I have lost so much support in the last year.

I know I’m lucky to move onto this group but it’s a stop gap. I’m apparently not safe to do online trauma therapy so this is a trauma information group. This will just give us eight weeks of generic information about skills. For this I have to be low risk and stable. So that is what has been said while I’m not safe to do the one to one. I find this confusing.

I’ve not self harmed for seven weeks. I hate myself for this. The anxiety is high. But I’m expected to just be OK. That’s how it feels at least. I just want to harm again. I feel it wouldn’t matter anymore. No one would check on it. And so what if I go to far. It wouldn’t matter.

I know I sound pathetic and I probably am. But I’m angry and upset. Maybe I should of left this post for another day but I needed these thoughts out before I explode at someone. Especially as I’ve been told by someone else something that has annoyed me and left me feeling even more left out and alone. It’s left me with suicidal thoughts (I’m safe and won’t act on them). I’m tired of being made to fight so hard.

I apologise for being self pitying. We shall see how the trauma information group goes when it starts in March. I’m unsure if I will record this or not. For now this is the end of therapy.

Therapy 2021: Session 4

Date of session: 26/01/2021

Please be aware that some of the content may be triggering. Please take care πŸ’š

Before this session I had homework to do. I left it until the last minute due to feeling ill and tired most of the time. I also knew it would be hard as it involved identifying emotions at some level. This is an area I find hard and frustrating. I also had to build a new safe place to use to do this. This I resented. I did it the night before.

At the start of the session, as always, I was asked how I’d been over the last week. I said about the pain and tiredness. She asked how I’d been doing with the self harm and I replied I still hadn’t self harmed since before Christmas. She was pleased with this. I am less so at this time. She also asked how my dissociation had been which I always find hard to answer as I’m not always aware when I’m dissociating. I explained a couple of things and she said it sounded more like acting mindlessly rather than dissociating. I’ll agree to disagree here but hey ho.

We then moved on to look at the new safe place I had created and went through all its sections and the different senses that related to it. I won’t discuss my safe place at this time as I’m not sure it is a wise thing right now. She was happy with the place I’d created and the use of senses. She then asked about emotions and feelings in the body. This is where I had difficulty and this made me feel uncomfortable and annoyed (anger and annoyance I can identify, though not always accurately in others). She now wants me to keep going through the safe place when I’m not stressed to see how it reduces feelings and calms me. Then move on to practicing it when I think of a mildly irritating scenario. At the moment I’m in a constant state of anxiety so we will see how we go.

After this she wanted to discuss next steps. She had, had her supervision meeting and discussed about doing further trauma work with me now I wasn’t self harming (a prerequisite I had been given). It was now decided it was still to unsafe to do the trauma work online due to my high score on the DES (Dissociative Experience Scale) as she wasn’t in the same room as me. I understand this to an extent but it feels like I have to somehow get better so I’m the right level of ill. I can’t be too ill, but I can’t be too well.

The above led me to having to make a decision. We could do another couple of sessions winding down and then leave it until face to face was an option or I can join a trauma information group in March for eight weeks and next weeks session would be my last individual session. I explained I would have to consider the timing of the session and how it would impact on my family as its a two hour course. I had some less than pleasant comments in response that left me incredibly upset, including “the group will go ahead with or without you” and “you’re lucky to be offered this so soon”. I don’t dispute how lucky I am, I just needed to consult others as I’m not the only person it will effect. She knows of the difficulties at home. I was told to just be assertive.

After the session I was in tears. I felt some of the comments were unfair. I had not turned it down flat, just explained that I wasn’t sure I could do it due to the issues in my family. But then I was an awful person. I feel now something that may be paranoia but also may not be, which is that this has all been to leave me without support and the world knowing how awful I am. I’m still not feeling great in regard to this. I have considered emailing the psychologist but I’m also scared too. It has triggered a lot of feelings of fear of abandonment.

I have managed to arrange that I will be able to attend the group of the offer is still open. We will see what happens next week.

Therapy 2021: Session 3

Date of session: 19/01/2021

Please be aware that some of the content may be triggering. Please take care πŸ’š

Since my last session I have felt incredibly unwell mentally. My anxiety has been through the roof, especially with regard to the homework she set, and I’ve had many flashbacks. I’ve not slept particularly well and felt very sick. This is where we started the session.

My homework had been to wish for my psychologist to get ill everyday. This made me feel particularly ill. It was to prove to me that I have no control over people getting ill. And I understand that and rationally know its true but I’m not there on an emotional level yet. The psychologist had not been ill, or at least she told me she hadn’t, and tried to reassure me. It had also brought up ideas that maybe this had been to prove how evil I am as well. The psychologist started to think maybe this had been a step too far too soon. We may go back to this at a later date.

The main point of today’s session was to create a safe place for me to go to mentally in my mind. This didn’t go particularly well and I think the psychologist saw this. I do feel I should have been guided better with my choice as its far from appropriate now I look back at it and at the end of the session it was suggested I might try somewhere else that is calmer. I feel because I was being asked to use emotions to find the safe place I misread it all. I find emotions so hard to place. I was totally lost with it.

I’m trying so hard in these sessions. I’m continuing not to self harm. I know it’s going to be more difficult before it gets better but at the moment I’m struggling. I feel so alone. I feel noone can understand this. Feeling constantly on the edge of panic is exhausting. I’m so tired right now.

Therapy 2021: Session 2

Date of session: 12/01/2021

Please be aware that some of the content may be triggering. Please take care πŸ’š

This session was an incredibly difficult one. I still feel very unwell from the session even after over 24 hours after the session. Many things were covered.

We started the session by looking at how I am doing with not self harming. At the time of the session I was on day twenty eight since I’d last sef harmed. I explained it was still causing me extreme anxiety that people will become ill. I explained I’m trying to keep going over the rational side of things but it is hard, especially before sleep. We talked again about the rational side and things I can do to make my bedtime easier. She then set me the hardest thing I could think of doing at this time. She wanted me to wish for her to become ill each day.

As soon as she said this to me I felt physically sick. The thought of saying that I want anyone to become ill is just so against what I think and feel and do. I’m still finding it hard to comprehend and my first day of trying it has left me feeling even more physically unwell. I understand the point is to show me I don’t have the power to make people ill but I’m still scared.

We also looked back aty results from the Dissociative Experience Scale (DES) that I completed in the last session. It came out pretty high at 85% out of 100% which says I’m dissociating a lot of the time in different ways. We looked at specific questions I scored highly in more detail so she could get a bit of a more in depth understanding about my dissociation. Problem with this though is that when you dissociate quite often not aware of things so it was tricky.

We also completed the IESR questionnaire which looks at the effect of trauma on my life. This consisted of twenty two questions related to how much certain things, linked to trauma, effected me in the last week. I scored fifty three which is apparently quite high and suggests PTSD (Post Traumatic Stress Disorder) which is stressing me to the point it impacts on my immune system. So it’s nice to know I score highly somewhere… πŸ˜• Above thirty seven identifies PTSD. Apparently it was not surprising I scored highly. It was a difficult questionnaire to do.

All the things I’m doing now are working towards starting proper trauma therapy. I’m feeling really apprehensive about it all at the moment. Life is feeling extremely difficult and I’m working on finding new ways to cope. We shall see how things go.