Tag Archives: Reflecting

Chaotic Cancer: A Family Member’s View: Prognosis

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

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.

A Letter To My Best Friend

This is a personal piece. Please be aware some content may be triggering.

Dear M,

You have stuck by me for a very long time. 13 years we have known each other and in my mind we just seemed to click straight away. You made joining a new university in my second year, when everyone has already made good friends, less daunting. You didn’t mind me sitting with you. You were awesome.

I feel our friendship cemented itself quickly and more so when we worked together on the project away from uni. You made me laugh a lot. We seem to have a very similar style of humour. Working together seemed easy. It was definitely the best paired work I’ve done and the most enjoyable.

When you left uni soon after, I missed you a lot. I was determined to keep this friendship. It meant, and still does, a lot to me. I loved that we messaged each other nearly everyday. It was/is so easy to talk to you and I always look forward to seeing you.

You were the main person to encourage me to get help for my mental health. You were so supportive and made yourself available at all times even when you weren’t doing the best yourself. I’m forever grateful for this. You even stuck by me after the suicide attempt. You’ve dealt with so many of my attempts to end my life.

You’ve also been my biggest cheerleader. Helping me push through to finish my degree, helping me do something special for my 21st, and celebrating me graduating. There’s been many milestones since as well and you are always the first person I want to, and normally do, tell. You push me to do what you know I’m good at. You can see my potential.

I’ve loved being a part of your milestones too. Going to your hen party was a high. Seeing you get married was special. And meeting your children has been one of my favourite things. Plus graduating on top of working and being a mum. It may not of been my right but I felt so proud of you, as I still do.

You are an amazing person. You are kind, caring and supportive. You make yourself available to me even with everything in your life. Your family has been amazing to me too and that must be to do with you. I feel comfortable with you, something that doesn’t come easy to me with people. You are special. You always know just what to say and that includes you saying you don’t know what to say. You’re honest with me. I trust you.

So the main point of this is to say thank you. Thank you for being part of my life and allowing me to be part of yours. Thank you for being there and supporting me. The last time I was in A&E you text me the whole time even though you must of been busy and that meant so much to me. I know I’m not the easiest person to be friends with and I’ve worried you repeatedly (I’m so sorry for this) but you’ve stuck by me again and again.

You were the person I wanted with all the news of mum’s cancer. Lockdown has made me miss you like crazy but you’ve shown me our friendship can last through time and distance. I hope you feel the same.

I know I may not be your best friend but you are certainly mine. I would not be here without you. Thank you for being you.

Love Jo x

Chaotic Cancer: A Family Member’s View: Tests

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

I explained this new little series in an earlier post ➡️ 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 💚

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.

Chaotic Cancer: A Family Member’s View: Intro

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

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.

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

So It’s Been A Year…

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

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.

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.

Therapy 2021: Session 4

Date of session: 26/01/2021

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

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.