Tag Archives: Guilt

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.

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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: Tests

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

I explained this new little series in an earlier post ➑️ Chaotic Cancer: A Family Member’s View: Intro

So with diagnosis you think the next step is treatment but oh no there is an endless round of tests and appointments to deal with. And it’s stressful for all involved.

A lot of these appointments and tests happen at the last minute so it is extremely hard to plan things around them. Things get changed at the last minute and the term chaotic is very apt.

For someone who needs routine and control this has been extremely hard for me to deal with. It’s not easy for anyone but this has added to the stressfulness of the situation. I can feel the anxiety in me about a change in routine. It’s selfish I know. Or that’s what I’m telling myself. What’s my anxiety to my mum’s cancer?

Having a lack of control over the situation and life in general leads me back to my reliable coping mechanisms. Not good ones. Self harm is back. And honestly I have no shame about it. I know I need better ways to cope. But currently don’t have the time.

For anyone going through this, how did you cope with the appointments? My phone calendar has never looked so full and I think that is the only thing giving me any sense of control, having all the dates in there.

Feel free to share your thoughts, tips or ideas in the comments or 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.

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.

Breaking Up A Toxic Relationship

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

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.

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 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.

What I’ve Learnt In 2020

2020 has been a hellish year for pretty much everyone. A global pandemic seems to make life difficult, who knew? But I’ve learnt a few things in 2020 and I thought I’d reflect on them.

1. I have amazing friends

OK, I’ve known this a while but it’s become even clearer this year how amazing they are. We’ve supported each other so much and I’ve known they are always there for me. I love them dearly.

2. Random acts of kindness are special

I’ve tried to do some random acts of kindness this year to cheer people up. I’ve also received some too. They have made me feel so special. They’ve brightened some of the darkest days.

3. Lockdown birthdays suit me

I loved having my birthday during lockdown. The lack of pressure to do anything was awesome. It’s the most relaxed and perfect birthday I’ve had. I want that every year please.

4. Validation is so important

Having someone agree about something I am experiencing has happened a couple of times this year, especially linked to my mental health. I had a psychiatrist who agreed with me about my depression getting worse and a psychologist who could see OCD behaviours and thoughts. The validation made me feel like I wasn’t just looking for the bad but that what I was feeling was real.

5. A smile can make your day

Here I’m not talking about just receiving a smile from someone but actually starting off the smiling. On my walks with my dog I have taken to smiling at the strangers I pass and have mostly been rewarded with smiles back. It brightens my day just a little and creates a little human contact that I can cope with.

6. You can’t make eye contact on zoom

This was something pointed out to me by my DBT peer support group’s facilitator. It is impossible to make eye contact as you are always looking at the wrong bit of the screen. Even if you both stare straight ahead it won’t work as you then can’t see the other person’s eyes. This is information I have imparted to many people since. They’ve all had their minds blown. So thanks Sally for that info.

7. I do actually need physical contact

I’ve never thought of myself as someone who needs physical contact before but hugs from friends are something I’ve really missed. Being in their presence, even, is something I miss greatly. Just to be with those people is so important to me. I also missed hugging my nan for all the months I couldn’t. Having that back is so special. I appreciate those hugs.

8. Pets are amazing

Again I knew this already but this year they’ve really stepped up. My dog has kept me going out and in some kind of routine. My cats are just loving and have entertained a few people on zoom (especially when they scare the life out of me, try to eat the laptop cable or knock a pile of stuff to the floor). Also having cat cuddles during and straight after therapy has been awesome. I now do not want to do therapy without a cat. When it becomes face to face again the cat is coming with me. That would make them look I’m sure.

9. I can draw

I’ve always tried to draw and never felt any good at it. Then just before lockdown I did some art things with a group I’m part of and it started to make me wonder if maybe I could draw. During lockdown I decided I’d try it out and began drawing every day. To begin with I’d draw animals and cartoon characters for friends, family and their children. Most was simple. I then developed it further and I feel like I’m getting a lot better. I’ve even shared some of it on Instagram and Facebook.

10. People are mental health aware but…

This is probably going to be the most negative one. With lockdown there has been a lot of talking about helping people’s mental health during these times. People are showing they are aware of needing to look after their’s and others’ mental health. But it has become clearer that we need to make people mental ILLNESS aware now. People may understand mental health, they don’t all understand mental illnesses and what it’s like to live with one day to day. There is a long way to go with. This means that instead of a mental health awareness week/day we really need a mental illness awareness week/day. We need people to see the difference between mental health and mental illness. I plan to write more on this in 2021.

So 2020 has definitely been a year of learning about others and myself. I’ve deliberately tried to keep the negative out of this list (believe me there are many things I’ve seen this year from people that have shocked me in a bad way). I’d love to hear what you’ve learnt so feel free to share in the comments or on Twitter, Facebook or Instagram. I’m aiming to be busier on all these platforms.

Lastly I just want to say a huge thank you to everyone who has read, shared, commented or supported me in any way. I really do appreciate it and wish you the best for the years to come. You’re awesome. Be kind πŸ’š

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