Tag Archives: relapse

Chaotic Cancer: A Family Member’s View: Prognosis

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

This is my view as a family member of someone who has been diagnosed with cancer, with particular relation to issues it causes to my longstanding mental illnesses.

Prognosis. What’s likely to happen? Are we looking at a time frame? Will treatment be a cure? Staging? Grading? All this suddenly comes up. Some of the things you don’t even realise until you’re in the middle of it. Like I didn’t realise there was a difference between the grading of a tumour and the stage of cancer. There is. (Grading looks at the speed and growth of the tumour, Staging looks at how much cancer there is and how much it has spread).

Prognosis was something that came into my mind straight away. I wanted to know if my mum would get better or did I have limited time with her. This was why there were many more tests required after diagnosis. We were pretty sure it had spread from a primary source to the liver and it was important to try and find the primary source. It was suspected to be in the stomach. The type of cancer my mum has (neuroendocrine) means the primary can be on one of many places and usually isn’t found until it has spread. As it was mum’s was an incidental finding during an operation.

To begin with we had a lot of confusion surrounding the prognosis. We were originally told it wasn’t curable but it was treatable. This sounded OK. Then we got the grading back and at first it was not the best outcome but a manageable one. Mum would have years. Within an hour we had another phonecall that changed that to it being more aggressive. Finally my mum asked for clarity on prognosis.

Eighteen months to two years life expectancy.

It was like a slap. We had never been led to believe this was the case at all. Mum just dissolved. Understandably. I just had to get out of the house (oh yes as it is covid times, her prognosis was given via a video appointment). I phoned my best friend and told her. Her response of “Shit” sums it up really. It was hard telling her. It was hard saying it out loud.

After a bit of tears, not many, I pulled it all in. I’ve buried it on the whole. I spoke briefly to the psychologist who did my last lot of therapy as I wasn’t sure about doing the group she wanted me to join. She told me to try and forget the time they had said and just go with it. After all it could be wrong. This I try to do but when you least expect it the words “eighteen months to two years” slap you in the face. I might not even get to 34 with my mum still here. My mum still has her mum at 63. It doesn’t feel fair. It’s unlikely she’ll see a grandchild.

I also feel a lot of guilt. We don’t always have the best relationship and I struggle with both ways of thinking.

The biggest thing that got me though was when I was stressing over all the chaos of cancer and someone said “it’ll get easier” and realising that it’ll only be easier, maybe, when she dies. Until then cancer will be there causing chaos. This has massively messed with my head. I’ve had nightmares. I’ve had panic attacks in the middle of the night. I cope by trying to just be practical and ignore it. But it gets to you in the end.

For more information and support about cancer check out Macmillan Cancer Support. You can keep up to date and share on my 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.

When Emotions Overwhelm

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

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.

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 2020: Session 16

Date of session: 16/12/2020

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

Today was my last session of 2020. It was also meant to be the last session of this course of therapy but that has changed and will be now continuing in the new year.

Yet again the anticipation of the session was overwhelming. In all honesty I’ve just felt incredibly tired since last week and no idea what else I have felt. I’ve not really had the time to investigate what I’ve been feeling either.

Today we looked again at the stopping of self harm. To do this we looked again at the motives behind it and how I feel when I try to stop. The huge anxiety it gives me. This made her more sure this was now an OCD behaviour. We looked at intrusive and obsessional thoughts and how they relate to my thought patterns. I did get a little frustrated that I wasn’t being understood.

Because of looking at this as an OCD behaviour it has meant we are going to look at a certain way of combating this. I think it was called habituation and changing the way I see it from a need to a want. We looked at what is classed as a need and what is classed as a want. It did leave me feeling guilty about my self harm. There will also involve a behaviour experiment about what might happen if I don’t act on the thoughts.

Part of the habituation means giving up the self harm and riding out the urge and the anxiety it causes. This feels scary and my anxiety started to creep up just talking about this. It was edging on panic. The thought of losing the self harm is scary. I’m terrified. I have to log everything about how I feel, what I think, what I do to distract/help myself and how long the anxiety lasts. Apparently anxiety shouldn’t last more than 40 minutes. This is not my experience but we shall see.

This time of year is hards for me. Part of me wants to say this isn’t the right time to stop but is it just another excuse? I’m dreading later on when I don’t do it. Will I just be a failure either way?

I have two weeks to see how I go. Two weeks until another session. I hope not to be a burden to others. I’m hoping I don’t compensate with other behaviours I use to ease anxiety. We shall see.

My Mental Health Survival Kit

We all have things that impact our mental health, whether these be good or bad. I’ve been thinking about all the things that help me get through when my mental health isn’t great or just day to day and I thought I’d share them in case there was something you may like to try, to add to your own mental health survival kit. I have not included pets and people in this list but it goes without saying they are definitely something that helps me.

Music

Music is a big part of my life. It’s great for all kinds of situations and I find great meaning in the lyrics. It also allows me to block out the voice I hear at times. I can also use it when I’m feeling anxious in a public place, especially if it’s noisy. Some of my favourites are Simple Plan, Linkin Park, George Ezra, Panic! At The Disco and Busted.

Earphones

Leading on from music is earphones. Obviously I use them to listen to music but I’ve also been known to put them in to block the outside world out with no music playing. They also can make people not talk to you so when I am feeling overwhelmed they are useful.

Reading/Books

Reading is my escape. I love it. I read a huge variety of books, both fiction and non-fiction. I enjoy learning new things as well which reading helps with. I particularly love books as they just feel good to hold. I have a kindle but haven’t used it in a while, though its useful to reread Harry Potter. It isn’t always easy to concentrate though which frustrates me.

Harry Potter

Harry Potter is a big part of my life. I love the books and the films. I’m a proud Hufflepuff. The world is an escape to me. I know it so well that it is comforting. It was also there for me as I grew up and made me feel less isolated. Its something I can talk to people about and makes me feel connected to them.

American Sitcoms

These are my go to when I feel bad but can’t concentrate for long. I say American sitcoms as I just find them better than others. My favourites are The Big Bang Theory, Friends, Speechless, How I Met Your Mother and Young Sheldon. They also tend to only be about 20 minutes which is perfect concentration time. Also I tend to watch them over and over so I know most of what to expect so I don’t have to concentrate too hard. Another reason I like rewatching them is that programmes obviously make us feel emotions. When I see programmes I feel the emotions incredibly intensely and I can’t bear the feelings they create. With sitcoms this is reduced as its normally positive emotions, plus if I’ve seen them already I don’t tend to get the extreme reaction.

Stand Up Comedy

Another coping strategy is to watch stand up comedy. It’s generally light and doesn’t cause the extreme emotions. I tend to be able to enjoy it, not all the time but mostly. I have a love for British comedians with Jon Richardson, Josh Widdecombe, Joe Lycett, Adam Hills and Nina Conti being my favourites.

Fidget Toys

I have a couple of fidget toys that I use out and about when I am anxious. I’ve always needed to fidget since I was small. I used to use bits of blu tac a lot to fidget with, making little animals out of it. I’ve also used lego minifigures in the past. Now I’ve invested in a couple of fidget toys. Not only is it good to move the pieces, I also find comfort in feeling the smooth textures. I’m quite a tactile person in this sense. They are well worth the investment.

Writing

Writing is my outlet. If I can do it then it helps me get things out of my head. It’s not always easy though and I do have to judge whether I’m in the right place to do it. I was always told I was no good at writing when I was younger. My ideas were said to be good but my construction of sentences was classed as poor as I tended to miss words out because my brain worked faster than my hand. I’ve kind of conquered this though and, while I still have doubts, I feel good that I can write and prove people wrong.

My Phone

Yes I know its modern and people will say its sad that I feel I need it but I would be lost without it. It allows me to stay connected even when I physically can’t connect. It is my camera for another hobby I enjoy, photography. It has my photo album so I can reflect on good times. I write my blog on it. It also has a game on it that helps me distract when things are bad. It has all these functions that help me. Obviously there are times when it is not great being so connected but the good outweighs this for me.

Maths

Sounds strange I know but there is something about the logical reasoning of maths that is comforting. I love immersing myself in maths problems. It’s been a major coping strategy for me since I was small. My grandad used to set me maths problems for fun and I loved it. At one point I did my 3 times table as far as I possibly could in an exercise book when I felt overwhelmed. More recently I’ve moved on to the Fibonacci sequence. I love algebra the most.

Memes

I love memes. They make me smile. They are relateable. They are fun. I can get lost looking through memes. For this Tumblr is great. Also Facebook can be good too. I see more memes on my Facebook news feed than I do what my friends are doing. And actually that’s OK.

Talc

This may be an odd one but I love the smell of talc (not so keen on the feel). It’s a smell I find really comforting. If I’m really stressed smelling talc calms me down. It can also help me sleep better when I’m upset.

Art

This is a fairly new addition and is something I feel has become part of my every day routine. I’m trying hard to work on not being a perfectionist but it is difficult and there are times it frustrates me. But it has also led to praise and I’m finding this something I am starting to allow myself to be praised for. (If you’d like to see more of my art you can find it on Facebook or Instagram).

So those are just a few things in my mental health survival kit. You may have your own things that work for you. Feel free to share in the comments or on Twitter, Facebook or Instagram.

Lockdown 2.0

Here in England we are heading into our second lockdown across the country. While the first was not great, I’m finding the thought of this second one much harder to cope with. I’m sure I’m not the only one.

For the first lockdown I had lots of projects I set myself. I had a routine that suited me well. I even enjoyed my lockdown birthday. This time I feel so empty about it. The idea of finding projects to do feels overwhelming. This time I’m not in charge of my routine. This time I can’t keep everyone safe as those that I live with who were shielding no longer need to this time.

The thing is I’d been hoping for a second lockdown as I didn’t feel safe in the world as it was becoming. People were hugely selfish and disregarding the rules. In shops it was like people thought their mask made them invincible. I’m convinced many had stopped washing their hands. And noone could count to six.

So now the second lockdown is here I’m anxious. I’m living with someone who is terrified of being trapped in the house again and who’s mental health has suffered a lot. This has impacted on my own mental health detrimentally. I feel trapped with them. I feel I’m not strong enough to support them through it all again. The first time took its toll as it was.

It also doesn’t help that my own mental health is probably in a poor state anyway. I’m going through therapy and it’s hard. I’m cut off still from those I just want to hug. And have been for months. I’ve seen so many people deteriorate over this time period that I’m worried what it will do to them further. But I don’t feel strong enough to support them and feel guilty about this.

Overall I’m full of anxiety and doing my best to stick my head in the sand. I don’t want to read the news or the endless speculations. I don’t want to see the selfish people who are hoarding already or hear the complaints about what is being done to save lives. It’s overwhelming me with feelings I can’t identify but make me feel sick.

This lockdown is necessary. But it’s scary. I wish I could say we’re all in this together but some have shown us otherwise. I’d like to say I’m here for you all but that would be stretching myself too far. All I can say is there are numbers in the crisis contacts part of the blog (look in the menu). If you feel bad, talk. You are not alone. Big hugs to you all. Be kind πŸ’š

Therapy 2020: Session 8

Date of session: 21/10/2020

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

Another difficult session. Each week I dread this 50 minute period of time. And it’s taking longer and longer each week to sort myself out. I know that this week, again, will take me time to deal with. Writing it out is the start of the process.

We started by discussing how I’d been the last week. I was honest and said I had been low in mood. I didn’t get far enough to mention the suicidal thoughts and melt down I had during the week. She asked if I knew why I felt low and we discussed some of what we had last week and challenging the thoughts.

We also looked at what other feelings I had been having and came up with guilt and anger. We worked through whether these matched the facts and whether they could be acted on. In some cases this wasn’t the case so the need was to act opposite. (Apparently when they ask what the opposite to acting by repairing for guilt, they do not want the answer destruction.).

We then explored the anger about aa certain situation in more detail and tried to separate my anger at the other person and my anger at myself. This was difficult to work through and some things that were said have upset me quite a lot and have me doubting myself more than ever. A friend who I discussed it with doesn’t agree with what was said about the situation and this has left me in utter confusion.

I’m hoping that I can get through all this. At the moment my head feels full to the point I can’t think about anything as nothing can move. There are people I desperately want to talk it through with but feel unable to do so. I feel more and more like a burden. I almost feel at this point that this therapy could kill me. We are halfway through the allocated number of sessions and I have no idea if in 8 weeks I’m going to be able to cope any better.

Why I Hate The Term “Mental Resilliance”

“Mental resilliance” is a phrase that keeps cropping up. But it is a phrase I have come to hate with a passion, especially with the way it is being used. It’s connotations make me uncomfortable and I cannot accept it.

First of all I think we need a definition of the word resilience. I’ve found a definition of it in psychology:
“The ability to adapt well to adversity, trauma, tragedy, threats, and even significant sources of stress.” Better Help, 2019

This doesn’t sound too bad. It suggests that we can learn how to get over issues more quickly. However this has led to people taking the phrase and believing that people with a mental illness should be more able to get over a mental illness quicker if they are resilient or even not suffer in the first place. This has been shown by comments made by prominent people in the media.

The problem with these comments is that they imply that if you get ill mentally you are not resilient enough. It gives a sense of failure and that you are not a strong person. This couldn’t be further from the truth. Quite often people with mental illnesses are strong and resilient for too long. They don’t seek help straight away as they feel they should be able to deal with it. This talk of resilience reinforces it.

So what should we be doing?

I’m not saying there is no place for teaching skills to help with mental resilience as it is useful to deal with stressful situations in the short term. However we need to make the narrative clear that mental resilience is not a concrete prevention against mental illness. It is still possible to become unwell even if you are resilient. It does not mean you are weak if you become unwell. Mental illnesses are often caused by things outside our control and for that we need treatment.

Instead, as well as teaching true mental resilience, we need to be saying that it’s OK to talk about our feelings in times of distress. It does not make us a “whiny snowflake”. It is a strong thing to do and will help with our resilience in the future. We need to be helping each other. Just because your younger and suffering does not mean you are less resilient than someone older. All it shows is that I’m the past people couldn’t speak about mental illness and now they can. That is resilience but in a different way.

I think what we need to do is reclaim the term mental resilience and educate people on what it means. We need to take on these people who seek a generational divide about living with a mental illness. We need to change the language we use.

So my question today is what do you think we should be teaching in terms of mental resilience? Feel free to share in the comments or on Twitter, Facebook or Instagram.

Therapy 2020: Session 6

Date of session: 07/10/2020

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

Today’s therapy session was hard. I mean really hard. I felt sick less than halfway in. My head has been thumping since and felt so full that it feels like nothing can move in it.

After last week’s statement that I made that I was worthless, it was decided to look at my core beliefs and challenging them using a form which had a name I cannot remember. It has a number of sections to work through.

The first section to consider was early experiences that could have created the core beliefs. This was where I found things the hardest. In particular hearing the word victim used for me. I’ve never associated that word with myself and I don’t think I want to anymore.

We then moved on to look at my core beliefs about me, other people, the future and the world. I had to think of three adjectives for my view of each. As seen below.

It was noted that most of my views were negative apart from those of other people. This was seen as a little odd considering the early experiences I’d been through. We discussed this slightly and it seemed to be the case as I say its my fault. This is something we plan to look at more. I’m not using logic it seems.

I’m also finding the technology for the sessions frustrating as we keep getting cut off in the middle of conversations, sometimes mid sentence, and although she calls me it stops me a little.

After the session I was a mess. I’ve struggled most of the afternoon and have had to work hard to get through it. Hopefully things will improve.