Not waving but drowning

Things aren’t easy right now. I mean, they’ve never really been ‘easy’, but lately it’s really felt like a huge struggle to keep going. I am increasingly turning inwards and shutting the world out. Life feels more about survival than living right now, and if I am completely honest, there are days where I am not all that bothered about the survival side of things.

If it wasn’t for my kids I am not sure I would be here…and that is sad because surely, by now, I did ought to feel like I have some self-worth and value. I should be able to look around me and see the love that surrounds me, the family I have created and the support network of friends who truly value me and think, ‘do you know what? I am still here. I survived some horrible things. But the past hasn’t broken me and cancer hasn’t beaten me. I need to live for now and appreciate what is here right in front of me. I am a good person. I am loved’.

But, and there’s always a ‘but’ isn’t there? When I am stuck in this dark place I really struggle to see what I have. When the little ones and the teen are present (which is pretty much all the time right now) they can’t see what’s right in front of them because they are not of the here and now. They can’t understand or trust the safety that I have built for all of us because they live in a constant state of fear and hypervigilance that is playing out on a loop from decades ago. They don’t need a wife and children they still need a mum. They feel unloved and unimportant. It is that wound that is festering and overriding my ability to feel like I matter. It is my job to fix that but I’m finding it really hard.

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So when it is crappy, like now, if someone says anything like, ‘you need to live for now. You’re not a child anymore. You have control. You don’t have to be hurt and upset about what happened when you were little. You are the adult and you are not a victim. You are healthy, you beat cancer….it’s time to move on, Let it go’. I literally want to smash them in the face and tell them to f*ck right off because they have no idea. I think maybe that’s the teen and her anger coming up? Or perhaps it is my adult who is just sick to death of being told how and what to feel.

Whilst I know it is true I just do not need these messages from other people. I have had my feelings invalidated my whole life by my family, and often by myself (I hate that Inner Critic) and sometimes I just want a bit of empathy. Sometimes I need to hear that it’s ok to feel sad, let down, abandoned and that it’s not possible to be strong and together all the time. Sometimes it’s ok to need someone else to help make things better. Sometimes it’s ok to not be self-sufficient. Having needs is normal.

I don’t really know where I am going with this. My head is a mess. I’ve been steadily losing faith in the idea that things can and will improve and that I am not destined just to be battered by every storm and wave that comes in. It gets to point sometimes where I am just so damn tired of battling with myself that I just think, ‘if this is how it is going to be then I am done with it’. I just don’t have the energy to keep putting on a brave face.

I have always struggled with my mental health and when I feel like I do right now it’s sometimes hard to recollect the good times. The times when there was fun… and LAUGHTER. Oh my god! I need to laugh again soon. I am naturally quite a serious person (or maybe I became serious because I had to be a grown up from a young age?) but I am also funny…when the mood takes me. But it’s been such a long time since I laughed, I honestly feel like I barely smile these days. Is that just depression? Or not having a decent social life? Or have I simply forgotten how to have fun?

When I was at university my best friends and I were fans of  Finding Nemo, or more specifically, the character of Dory. (Nothing like a bit of Disney and cold pizza to work out a killer hangover)I mean, her life story was pretty tragic, she’d lost her family and was all alone, but she had this blind optimism and a mantra to rival any motivational guru: ‘just keep swimming, swimming, swimming’ and not only that, she could speak whale! What’s not to love, right?

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I sometimes wonder if I should be trying to be more like Dory? Just keep going/swimming, try and make the best of a bad situation, and wait for something positive to happen. Maybe I am just not trying hard enough to be happy? That’s how I feel sometimes and it’s how people close to me sometimes make me feel too.

The thing is, Dory has one thing I don’t, and that’s memory loss. This is a big problem for me. My memory is crystal clear (ok, it’s all a bit of a blank before I was five years old… but then there’s a shit load of repressed memories in that blank space that are only now coming to the surface!).

I wish I could forget some of the things that have happened to me over the years. I wish I wasn’t haunted by my childhood and dysfunctional relationship with my mother. I wish I could simply block out some of the later trauma in the way that I blocked out the horrible stuff as a small child…but my brain doesn’t work like that. I have an almost photographic memory for events and conversations and so I can bring them to the front of my mind in an instant.

I might forget when I have a doctor’s appointment that I booked a few days ago, or what I’d agreed contribute to the PTA school Christmas party (yes, really, you’d be suicidal too!) but ask me about the time my mum woke me up and then instantly flew into a rage when she noticed I had put some laundry on the radiator in my bedroom to dry, and literally threw me out of the house wearing nothing but a nightdress/large t-shirt without underwear or shoes or when I was sixteen, then I can tell you word for word how that went down. I can tell you what it felt like walking half a mile to a friend’s house pulling my t-shirt down as low as I could, praying that I wouldn’t be seen, and that she’d be in.

That’s not a big thing event by any means, it’s just one of many odd things that happened, but has just come to mind as I am writing this in bed wearing similar. I can tell you how the regular, ‘I wish you’d never been born’ statements hit me deep and yet how over time I learned to stand there and take my mother’s onslaughts, unaffected, stony still. It used to drive her wild being unable to evoke a response in me. I guess that’s why I struggle so hard now to tap into my emotions, I learnt how not to show and not to feel emotion.

I remember so clearly the first time I deliberately threw up after eating and the satisfaction of how easy it was. The relief of an escape to the bathroom a few times each day to purge away some of the hurt and pain I was feeling. It doesn’t feel like 18 years ago that I was in the bath, razor blade in hand carving intricate criss-cross patterns down my forearm and watching the blood drip into the water and disperse. All these episodes are there in the archive just like it was yesterday.

What I am trying to say is that unlike Dory,  I remember how shit went down…every…tiny…detail of it. My brain has a video vault that plays periodically (sometimes when I sit in therapy) of episodes where I am terrified, neglected, uncared for as a younger child or flat out abused and victimised as a teen. I try not to think about it but sometimes it just comes up. It’s hard to escape it.

Sometimes when I am silent and blocked in session in one of my younger states my therapist asks me what I might need or needed back then – some form of holding usually…and asks me if there are any memories I can draw on to remember that feeling. I think she thinks I am being difficult when I say ‘no’ but it’s the truth. As I child I cannot recall even one occasion where my mother held me either when I was in pain or just through the sheer desire of wanting to hold me because I was her child and she loved me.

There has always been an invisible barrier between us. I’ve said before that my mum doesn’t touch me, even now. It’s not a new thing. And that’s partly why I am finding the ‘no touch’ boundary in therapy so hard. It really is just highlighting how sad I feel about not being held by mum. It really reinforces that sense I have of being untouchable and unlovable.

I keep hoping that things will change with my mum. I keep giving her opportunities to step in and step up but she doesn’t. When I text her the other day to tell her that my friend had died and how upset I was, she didn’t call me, she managed a text reply, ‘Sorry to hear about your friend. Work is really busy at the moment and I’m tired. Mum’ That was it. I was instantly hurt by the message. Why couldn’t she for once take herself out of the equation and just be there for me? Why is it always about her? I couldn’t care less if she’s tired right now….it’s not a competition, rather tired than dead eh mum?

My wife says I need to stop reaching out because I am always disappointed. I know I have talked about waiting for hope to die. But when I am sad, and my god I am devastated about my friend dying, the emotional part of me is so present and that part is young. That part hasn’t grown up yet. That part still wants mum, even if she is not the mum I want or need. It’s tough.

I know I am a grown up. I have survived. The wrinkles, grey hairs, and radiotherapy tattoos show me that I am not a child anymore. But my adult is struggling to keep afloat as I try to carry the weight of several younger parts, that can’t swim, on my back. I really want therapy to go well today. I want to be able to relax and just be how it is but I fear I’ll do one of two things: shut down and freeze through sheer overwhelm or pretend like everything is ok and put a front on. And that’s the danger, for so long I have done such a good job at waving that no one sees that I am actually, now, drowning.

 

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Cancer: the thief

*Trigger warning: cancer, cancer treatment, and death spoken about in no uncertain terms.

One of my closest friends is, as I type this, dying in hospital and it’s only a matter of time until the phone call comes to tell me that she is gone has died today.

When I started thinking about, and writing, this post this morning it was from the position of knowing that my dear friend was receiving end of life care in hospital and I wanted to express how sad, angry, and frustrated I feel about what has happened to her, and how unfair life seems sometimes.

It seems like an odd thing to be doing, carrying on with this piece of writing now, but I need to process this loss and writing is all I can manage right now. Every time I talk I burst into tears. I’ve cried and cried all day and now the tears have temporarily abated there’s a huge part of me that is grieving but another part that wants to tell everyone about this wonderful lady whilst I shake my fist and rage at cancer.

*

I feel like I am perpetually being robbed by this fucking hideous, persistent, crafty, bastard thief we know as cancer. I live in fear of it every day of my life, like so many of us. We (my family and friends) try to pretend like it doesn’t exist and that I am/we are unlikely to be burgled again, but I know the truth: it is only a matter of time before someone I love is taken from me or that I will be taken from my loved ones because cancer just won’t leave us alone. It can’t. It’s so deeply woven into the fabric of our existence these days. With 1 in 2 of us now being subject to some form of cancer diagnosis in our lifetime, there is a sad inevitability about it: you will be robbed blind, it just remains to be seen in which way, will it be your life or the life of someone you care about that is targeted…or both?

The fact remains, if you’ve been burgled once you’re likely to be the victim again. Just like my beautiful, darling friend. She had breast cancer fifteen years ago and then got diagnosed with Myeloma (bone marrow cancer) in 2015… and now she is dying. I guess some people might say that she was lucky to survive the breast cancer and get more precious years with her family and friends but it’s hard to see it that way right now when for the last two years I’ve watched the bravest woman I know try every line of treatment available only to watch it fail. We all hoped desperately for success and yet one by one saw each treatment was unsuccessful – now there is nothing left to be done, in her own words to a mutual friend, ‘we’re scraping the bottom of the barrel now’.

I have known this woman for a decade now and feel utterly blessed to have had her in my life. She was an English teacher, like me, and when I took up my first teaching job she promptly took me under her wing and supported me in any way she could. At the end of the first year of teaching my dad died suddenly and she was the one who delivered flowers to my doorstep and planned my cover lessons. She was there for me all through my subsequent mental breakdown. She has always been there. She has two children around my age and she became a great friend but also a mother figure. She never dodged the difficult questions with me. She noticed when I was sinking into anorexia or depression and would always say something caring but not intrusive. She always made me feel normal and cared for and SAFE. Later she supported me in my return to work and then through my pregnancy when I was teaching. Since then she’s been there through it all with me, another baby, my own cancer diagnosis and treatment, and now, sadly, I have also seen her through hers.

I have watched a beautiful, loving, kind, and vibrant soul have her life stolen from her bit by bit by the cancer thief. I was devastated to find out she had been diagnosed with Myeloma just around the time I was confirmed in remission with Hodgkin’s Lymphoma. I had more chemo and radiation to go but I knew that my treatment was effective and it spurred me on. The relief I felt to have been successful in my own cancer battle was short-lived because I knew now what lay ahead for my friend. I couldn’t take it away for her and I knew that her odds and stats were not in her favour. My cancer was curable, hers only treatable.

So whilst at the beginning we thought she might get 5 years or more with her and were ready to cheerlead her through her treatment, we are now less than two years in and she is at the end of her life, there are possibly days left but more likely hours remaining. There have been no good spells for her because she has not responded successfully to any of her treatment. She has been fighting a losing battle but hell has she put up a huge fight.

This warrior woman is a rock and an example to us all on how to live life and how to cope when facing death. Now barely sixty years old she has faced her diagnosis with a grit and determination that I know I would have struggled to muster. I know, in all likelihood, somewhere along the line I will either relapse in my Hodgkin’s or get another cancer diagnosis as a side-effect of the ‘kill or cure’ treatment I’ve already had. I am terrified of that happening but my lovely friend has shown me it is possible to smile and live through hell. I just don’t want to. I am scared.

I’m not going to dress this up and if it’s too much for you then stop reading. Cancer treatment for Myeloma is hideous. The treatment regime has been gruelling. I have felt so powerless as I have witnessed her go through bone marrow biopsies (this is the worst pain I have ever experienced) chemo after horrid failed chemo, blood transfusions, infusions, injections, poison after poison in pill after pill, and none of it has been effective. She’s suffered hair loss/thinning (the least of her worries), severe jaundice, crippling exhaustion, desperate anaemia, neutropenia, nausea, vomiting, diarrhoea, constipation, aching, balance issues, weight loss, bloating, insomnia, physical weakness and pain….and so much more. To watch someone keep going in the face of total agony is harrowing. She has always put a brave face on and yet I’ve known how hard it’s been. There’s a look in her eye: fear, I think, that she doesn’t show to many people but because I have been through cancer treatment she knows I get it, she doesn’t need to hide from me.

Less than a month ago I sent her a message to see how she was as she’d just started on another (last chance) line of treatment and got this in reply:

‘You know the score more than anyone: bad taste in mouth, tired as hell, and a belly like a poisoned pup. Lots of fluid retention with this one so looking pregnant! Hey ho, what a week! At least I got through the five days of treatment. Three weeks to recover now’

Despite the horror of it, and believe me this treatment is horrific she was still chirpy. I have messaged several times over the last few weeks and then two weeks ago my friends and I got a blanket text:

‘Unfortunately I’m in hospital. I’ve been here since Friday and I’m not sure when I’m going home. You know how I feel about that! Hope all well with you x’

I was in hospital on Wednesday 18th in the haematology centre having my regular consultant follow up. Fortunately I am still in remission (phew). I knew my friend was on the ward literally through the door, but that she was too ill for visitors. Since then I have been texting and getting no replies, like everyone else.

On Thursday when I was house hunting in Cornwall I received a call from my friend’s husband saying that she was now too ill even to reply to messages and that he would keep us informed. In my head I couldn’t process what he was saying at all. I couldn’t read between the lines. Maybe I didn’t want to.

I spent some of my therapy session talking about my friend and how I felt about what was happening. I said how I am not ready to lose her yet and that I always thought having time to say goodbye to someone would make it in some way easier when the time finally came. I can tell you now – it doesn’t. I can safely say that watching a person suffer and deteriorate before your eyes is no easier than losing someone unexpectedly. Unfortunately, I now have experience of both types of loss. What I do know is that losing someone you deeply love generates a pain and grief that is inconceivable until it happens.

After my session on Friday I went to Tesco. I was ambling round the shop in a post-therapy daze when another ex work friend/mum replacement (I try and collect these mothering older women!) text me to say that our friend had further deteriorated and is now on end of life/palliative care. As I read the message I felt my world start to crumble. Things suddenly became real in a way that they hadn’t until now. I left my trolley and walked out the store and sat in my car crying. Despite knowing that treatment isn’t going well and that she is desperately ill in hospital, I am not ready to say goodbye to a woman who has seen me through the best and worst times in my life. I can’t lose another person whom I love.

In the early hours of this morning I had a dream about my friend. I was visiting her in the hospital and she was unresponsive in her bed, as she is now. I sat there holding her hand when another version of my friend walked in the door and sat with me. She was as I have known her before her illness, full of life, vibrant, exuding warmth and love. She came in and sat beside me and said:

‘This body in the bed isn’t me, darling. It’s just my shell. It’s what’s left of my earthly body. I am here with you now in the way I always have been. I’ve had a good life. I’ve been so happy. I want you to tell people about me. I was a good teacher, wasn’t I? We had a laugh didn’t we?’

and I replied:

‘We absolutely did! You were the best teacher but you are so much more than that. You are an unbelievable wife and mother. I am proud and blessed to call you my friend. You are without doubt the kindest soul I have ever met and my life is all the richer for having had you in it. I love you so much.’

she replied:

‘I love you too. I’ve got to go now but I’ll see you soon’.

I woke up sobbing my heart out and couldn’t stop crying for a couple of hours.

*

I found out that my friend died early this morning.

So today is a bad day. It’s right up there among the very worst days of my life. I am beyond devastated and I miss my friend so very much. I will always miss her but I will always carry her in my heart.

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Why does physical illness always go hand in hand with a mental health crash?

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Look, I apologise in advance for this. It’s basically an, ‘I’m really poorly, am feeling sorry for myself, and I really miss my therapist’ ramble written from under the duvet, on a Friday night, whilst my wife is out at a gig that I am too ill to go to.

My immune system is beyond crap. My blood levels have never fully recovered despite it being nearly two years since I completed my last round of chemo. As a result of depleted lymphocytes, my infection fighting capacity is pretty non-existent. The doctors had hoped that things would’ve improved by now, but unfortunately my body is stubborn and has decided it would rather pick up and fight every bug that is going! I’ve been ill for almost two weeks now with the exhausting cold, cough, chest infection, no voice thing that’s doing the rounds. I’m so so bored of it. I just don’t have capacity in my life to be ill and still.

I thought I was getting better at the start of the week, hence the fact that I managed to drag myself to therapy on Monday albeit sounding pretty husky. By Tuesday, though, the dry, croupy sounding cough headed south and turned one of my lungs into some kind of gurgling swamp and I suddenly felt like I’d had all my energy burgled from my body during the night.

I finally made it to the doctors on Wednesday. By which time both my lungs sounded like crackling Autumn leaves being trodden on every time I tried to breathe. I’d spent the whole night trying to sleep propped on the sofa in between coughing fits but it was all a disaster. I know that I need to get better at seeking help before I am completely on my knees but I always worry about people thinking I’m some kind of malingerer or hypochondriac….which is I guess a hangover from all the doctor visits when I was misdiagnosed with my cancer where I was repeatedly sent away (fobbed off!).

I didn’t see my GP (apparently she’s retired) instead I saw a stony-faced misery guts with GP qualifications. I was really only there about the chest infection so it didn’t really matter that she had the bedside manner of a cadaver. The annoying thing is, though, that I could’ve been there about anything: my mental health, or illness, depending on which way you look at it has been pretty bad for the last six months or so.

Realistically after the huge anxiety attack I had a few weeks ago, coupled with the negative feelings I’ve been having about my body and the urge to self-harm it would have been good to air some of those concerns and discuss the possibility of medication for the times when things get out of control. Of course I didn’t say anything, I just took my prescription for antibiotics and went home. I didn’t feel comfortable telling her anything about my emotional state. I wonder how many people feel like this about their doctors?

By the time it got to yesterday I couldn’t even get out of bed. I was absolutely knackered and felt like my body was made of lead. My wife had to take the day off work to look after our son as I just couldn’t move or function in any meaningful way.

I’m not really here to moan about how ill I feel, what I wanted to talk about is how I’ve noticed that when I am poorly my ability to function effectively in a mental/emotional sense is seriously compromised. I wondered if any else has noticed this in themselves?

I’ve said before that I struggle to maintain the connection with my therapist between sessions and that I hate midweek especially. It’s so tough. It’s essentially when the little parts of me are most active and start to overwhelm me. It’s the time when I most feel like I need to check in with Em, to ask whether she’s still there, that things are still ok, and that something hasn’t happened that has changed the relationship.

It’s a really tricky position to be in because that tiny, screaming, terrified bit of me that is totally uncontained is desperate to reach out to her and seek reassurance but the thing is, when I do that, she doesn’t respond and so that desperate little girl feels completely abandoned and then can’t trust her when we go to therapy.

So this week has been hideous. Because I have been so poorly it’s felt as though my adult has jumped ship or died. I haven’t had the physical or emotional strength to hold it all together and my little ones have had free run of my mind. I’ve felt like I am completely emotionally unanchored. I feel like I need grounding and holding tightly. I have been so ill that I’ve stayed in bed and hugged pillows to try and settle and soothe those little parts, but it hasn’t helped and I just feel lost. This small inner child is desperate to be held close and I don’t know how to do that for myself so it’s become overwhelming. I really could use a transitional object – not that I’ve said this before!

I always miss my therapist between sessions but this week it all feels unmanageable, like a life and death situation. I feel like my filter is down and I desperately want to tell her how I feel and how much I miss her. I want to tell her how scared and vulnerable I feel. I basically want some kind of reassurance from her that things are safe still. Rationally I know that everything is fine and that we can work through some of this stuff on Monday but the child parts don’t get any of it. They just want to be cuddled…by her…NOW!

It’s tragic really and I know it’s basically my wonderful friend ‘maternal transference’ doing the rounds. I know that this desire to be taken care of and nurtured back to health comes from my childhood where I was never cared for or fussed over when I was sick. More often than not I was packed off to school because my parents were busy, or sent down to a relative because, ha, my parents were busy. Always too busy.

When I was a bit older and my parents had split up I was left at home in bed when I felt unwell. My day would be spent drinking Lucozade, making toast, and watching Supermarket Sweep and the lunchtime episode of Neighbours….and then watching the repeat again at 5:40pm. There was no one there to take my temperature, hold me close, bring me treats etc. There was never anyone there.

I think so much of how I feel when I am ill (or well for that matter) stems from this feeling of my not being important or worthy of care and affection. I always felt like an inconvenience, something to be managed (when ill) and so now, it’s little wonder that when I feel like there is someone who maybe does demonstrate some care and compassion (Em) I want to latch onto it and hold it greedily against my chest, or place it inside myself. I want that person to be there when I am sick.

I feel like a whiny kid writing this, but actually that’s exactly what it is, I currently have a bunch of whiny kids loose inside that want to be held and contained and my adult who is really just a crap babysitter isn’t even available to try and do the job.

I hope I am well enough to go to session next on Monday – pray to the antiobiotic gods! – as I don’t think I can cope with a missed session right now. As the title of my blog suggests, I’m ‘holding it together with rubber bands and chewing gum’ – it’s fairly precarious.

The one positive from being this poorly is that I haven’t got the energy to think about physical self-harm and I am not eating much because I feel rough and so that in itself is enough to take care of the anorexic voice for now. It’s a sad day when you feel lucky that you’re only dealing with illness and attachment issues!

I literally just want to be held. I know it can’t happen. I want to cry.

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I wrote this poem over the Easter break and gave it to my therapist (must’ve been having a brave day!).  It still feels really relevant today:

Not here

I am not in your presence

but, oh

how painfully aware of your absence I have become.

 

Time and distance

stretch

out

endlessly

between us…

 

You are so far away.

 

The holding place in my mind

struggles hard to keep you whole

 

Are you merely a figment of my imagination?

A hologram, perhaps?

 

*

 

Even when within my reach

you always feel so very far away

 

I can see you,

feel you, but

I cannot touch you.

 

That small space

opens up like a vast ocean

I stand on one shore

you on the other

 

You beckon for me to join you

promise to be my guide

and to witness the lessons of the Self

that only I can teach

myself.

 

For the longest time I have waited

warily watching

assessing the dangers that might lurk hidden

in the deep.

 

I believe I will reach you –

eventually

(is it misplaced confidence or simply wishful thinking?)

and so I begin the swim.

 

My muscles relax into a familiar rhythm.

The hardest, aching parts of me begin to soften

as the distance between us lessens.

 

It’s farther than I thought, though, and

sometimes cold

sometimes silent

sometimes strange –

The horizon keeps shifting.

 

I tread water a while

rest and catch my breath.

I look up and discover that

I can no longer see you.

 

Panic.

 

a sudden shiver

a lightning bolt

 

Both sea and sky shift rapidly

calm blues now rage-filled greys

Angry, turbulent clouds roll heavily in

raining hot tears down like shiny silvery bullets.

My fear rises alongside the storm-whipped waves

 

I am exposed

I am scared

 

Is there still safety on your shore?

I can’t be sure.

But it’s swim or drown

and so I keep moving.

 

There’s no going back.

I must have faith in what I feel

And trust in what cannot be seen.

 

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C is for…

Cancer.

Well, I guess I should’ve seen that coming on Friday. Another session where I didn’t even allude to the break or mention anything to do with the therapeutic relationship. It still felt like I was trying to work out whether she (my therapist) can still be trusted with the vulnerable child parts and until that happens I won’t be able to talk about any of their concerns and fears.

It wasn’t a completely wasted session by any means. I didn’t revert into the super-guarded, silent Gatekeeper which sometimes happens and The Teenager didn’t show up, either. She’s got no reason to be angry right now because the little ones haven’t come to session yet. In fact, the last two sessions have seen me remain firmly in my adult. I have talked plenty and got a lot off my chest. It has been helpful. I am aware, though, that if I don’t start talking soon about the child parts and those feelings then there will be a nightmare internal storm to deal with. I need to avoid that as I don’t have the energy to cope right now.

Anyway, I very rarely bring ‘cancer’ to session (sometimes if I have a consultant appointment but not always) and yet it’s something that completely saturates my life and is part of the reason I found myself back in the therapy chair in the first place. Since being diagnosed with Hodgkin’s Lymphoma in March 2015 my life, my body, and especially my head, have been sent into a bit of a tailspin.

As I’ve mentioned previously, I was misdiagnosed for at least two years before finally getting the correct diagnosis and treatment. My repeated trips to the GP never resulted in a blood test (which would have shown the markers….it’s a frigging blood cancer ffs!). Unfortunately, I think when you’ve had mental health issues and it’s on your record, sometimes doctors then see you through a different lens and treat you slightly differently than they otherwise would. It shouldn’t happen but it does. I think younger people (I literally had just had my 32nd birthday when I was diagnosed) also get overlooked when presenting with classic cancer symptoms. I was just too young… even though it is a ‘young person’s cancer’!

Everything I went and presented to the GP with was fired back at me with a logical explanation. I was complaining of unbelievable fatigue: ‘you have a young child and are pregnant with another, it’s bound to be more exhausting than the first time round and it’s little wonder you feel low’; drenching night sweats: ‘you’ve been breastfeeding and are pregnant now, it’s your hormones’; an itchy rash that actually covered my massive mediastinal tumour site (15x8x6cm) ‘it’s eczema’; a funny whistling noise when I breathed (stridor) ‘your chest sounds clear’ (yes! That’s because it’s not in my lungs, it’s the pressure of the tumour pressing on my windpipe and stopping proper airflow) and it was like this for pretty much two years.

I stopped going to the doctor in the end and just assumed that feeling like I was dying,  and being so tired I was crying everyday by the time my wife came home was part and parcel of having a toddler and a newborn baby. I ended up thinking that maybe it was post-natal depression…nope, it wasn’t.

It wasn’t until a lump/swelling came up just above my breast through my ribcage at the same time as a pea-sized lump above my clavicle that I was finally taken seriously. I got an emergency appointment and saw a locum doctor who basically felt my lymph nodes and said, ‘well, it’s one of two things, you’ve either got TB or Lymphoma. I’ll take blood now’. Err what? You know it’s not good when the doctor starts taking blood rather than sending you to wait for a nurse appointment. I knew TB wasn’t ideal and the treatment was nasty but it was unlikely given I had had the BCG when they still gave it in schools. I had no idea what Lymphoma even was. Never heard of it, like most people. Must be treatable with antibiotics right? I kind of went into denial at that point and went home.

A day later I was called into surgery to see my GP (should have set alarm bells ringing, fast track results and an immediate appointment!). We were en route to a family day out at a theme park and so I said ‘we’ll just pop in quickly and then carry on.’ WHAT THE FUCK?! Again, it just didn’t occur to me that something serious was going on. It couldn’t possibly be something bad. So me, my wife, and my two children (my daughter just three, and son 6 months) bundled in in the way that young families do: changing bags, toys, snacks, general chaos and sat down.

I could tell immediately that things weren’t right because the doctor was doing her best ‘serious and concerned’ face and put on the ‘caring and gentle’ voice. Shit. This is not going to be good. I can’t really remember what she said now. I think from that point everything became a blur. But she essentially told me my blood tests indicated I had malignant blood cancer and that I needed to go to the hospital immediately to get a chest x-ray.

From there on out it got really really bad, I had a huge tumour and needed immediate treatment as the tumour was so fast growing and I was struggling to swallow and breathe. So, then it was straight into the IV 12 chemo doses (a session every two weeks – ugh!) that made me feel like I was dying (and wanted to die) followed by 15 sessions of radiotherapy. I lost my hair, my eye brows, and my already fragile sense of self-esteem. I wouldn’t wish it on my worst enemy.

IT WAS HELL.

So, flash forward to 2017 nearly two years since last chemo and yeah, I am still here (whoop!) but essentially traumatised by the whole experience. Sadly, lots of people seem to think that when you are out the other side of treatment and have survived, that suddenly everything is fine again and will magically go back to normal. It just doesn’t work like that. I wish it did. I wish I could wake up and it had never happened or was just a nightmare but it’s not, everything has changed. I’m not a completely different person but my experience has shaped me in a way that I will never be as I was again….and in fairness it wasn’t great before. It’s just I have even more to carry now.

This change in me is frustrating for loved ones who have been cheerleading me through treatment and can’t understand why now that it’s all over and I have beaten the cancer that I am so overcome with sadness, depression, anxiety, fear etc etc. I ‘should be happy to be alive’ which of course I am but I am also devastated by all that’s happened. During treatment there is no time to take in what is going on, it’s all about survival but when it’s over the reality of the situation hits and that’s when everyone else has moved on from it.

Imagine how terrifying it is to think you could leave your babies behind and they would be too young to even remember you? It’s hard to be happy when you know that there’s a good chance that this cancer will relapse or if it’s not this cancer that kills you, then it’ll be another one because the effects of chemo and radiotherapy damage the system so much. I’ve been bought time, which I am unbelievably grateful for, particularly as two of my very best friends are currently battling terminal diagnoses but it’s still shit, really shit.

I had a kind of hospital phobia before my treatment. I hate the smell of hospitals – I want to puke every time I walk in the door. Part of it stems from when my aunt was involved in a huge RTA when I was six years old and she ended up in ITU. The wisdom of my parents was amazing (idiots!) and they took me to see her almost immediately following the accident and all the surgery she had had to have to piece her back together. I have never been able to get that image out of my mind. I was utterly terrified as I sat in the chair trying not to look at her.

So yeah, since having chemo that hospital phobia is now a million times worse and I have to go back to the unit every three months for follow ups. Every time I go I feel as though I am right back in the thick of it all. It’s awful. It’s like having PTSD and then deliberately sending yourself back to the trauma site over and over. The NHS needs to wake up to this.

No one really understands what it’s like or wants to hear about it…..but my therapist does, and she said absolutely all the right things on Friday morning in session. She made me feel validated and accepted and a little bit less frightened. And that, my friends, is why I love her, and why I will probably be able to go into session on Monday and talk about the break.

 

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Back to the therapy room

Tuesday evening marked the end of the 22 day therapy break – hooray! As first sessions after a lengthy disruption go, it wasn’t a complete disaster, but it wasn’t quite what I had hoped for, either. Damn it, there was no hot chocolate, nurturing hug, and a blanket to wrap around me! Seriously, though, I think it’s particularly difficult after a significant break to just launch back into the ‘deep’ stuff and pick up where we left off. I’m working on it, but I am just not there yet.

I wish I was one of those people that could just do life properly and not even need therapy, or at least be someone who can say ‘ah well, a three week break, it’s not a bother’ and not even notice the time passing. But I just can’t. Therapy is important to me. I’m now in that really crappy bit where I have finally allowed myself to attach and become dependent on my therapist and I have started to really unpick things, but it feels ridiculously scary and exposing.

I feel so vulnerable when I really open up and it feels as though it could all blow up in my face at any given moment. I’m sure it’s only a matter of time before I am told I am ‘too much’ and she terminates me. Despite caring deeply about my therapist and having an element of trust in her and the relationship, there are definitely parts of me that haven’t quite managed to latch on to a feeling of safety and don’t feel that there is the secure base that they need. It all feels so high risk for them. My adult knows she’s safe but my child parts are uncertain about it all. They love her but they are also fearful of her and the relationship. It feels like she has the power to totally annihilate them and, therefore, me. It’s hard.

Like an unsettled small child I’m really sensitive to any kind of change or disruption to my (therapy) routine. I think developmental trauma and cumulative traumatic events does this to people. I also recently found out that I fit comfortably on the spectrum for being a ‘highly sensitive person’ or HSP. (It’s not as bad as it sounds – Google it and do the online test.) I’ve become so hypervigilant, even more so since going through cancer treatment, that the smallest thing such as a time or day change can send me off balance.

Right now a three week long break is not just an unfortunately placed puddle that I need to skip over, the break feels more like a vast choppy ocean and I’ve got to swim to the other shore, fully clothed and wearing lead boots in order to reconnect with my therapist, and to an extent, myself. Terrible metaphor, I know!

I have really missed therapy. I have really missed my therapist. I have missed being able to dedicate a block of proper time to myself each week (albeit only 50 minutes!), time that focuses on me and my needs which outside the therapy session take a backseat – which I guess is part and parcel of having two small children. Without my sessions it’s felt like things have steadily been getting on top of me. I haven’t really been able to exercise any decent self-care strategies and what my therapist and I tried to put in place before the break (an internalising visualisation) just didn’t work at all. More on that another time once I’ve talked it through with her.

The longer the break went on the worse the feeling of being ‘spread too thin’ got, but then things in my day-to-day have become quite hectic over the summer holiday which probably hasn’t helped. It’s just unfortunate timing, really. It’s felt as though I am spinning too many plates and it’s only a matter time of until there’s a thunderous crash of crockery on the floor.

It’s really important, then, now that I am back in therapy that I find a way of quickly rebuilding the sense of trust in my therapist, find the connection, and also the confidence to address the things about the relationship that are really hurting me at the minute. She says we need to find a way of getting over my sense of shame and embarrassment around my feelings about her. It’s not easy, though!

Yes, of course I know all these painful feelings are being transferred into the here and now from past relationships, but my littlest parts aren’t able differentiate where the pain is coming from. They see her as the attachment figure now, and so her distance and lack of availability feels abandoning and rejecting somehow. It’s replaying how my mother was and that is just hideous. I can’t help but feel distressed and angry about the situation.

My adult knows she’s actually just being a therapist, a professional, and I need her to be those things BUT the little ones don’t want a professional, they need a mother! I haven’t yet worked out how to hold those parts for myself and be the adult, parent, nurturing figure that I needed back then and can’t give those parts the care I know they need now. There are so many overwhelmingly wounded young parts of me that just ache to be held and soothed by her- and she can’t hold me or make up for what I missed out on as a child. Ouch. That is so painful. No amount of rationalising the situation makes it any better. It just fucking hurts like hell.

So, as much as I wanted to be able to go into the session, sit down, and talk freely and openly, and continue to build on what we’d spoken about in the last session it wasn’t ever truly on the cards. I need to be realistic about these situations. I need to learn to take it as a win if I get to session and don’t completely shut down and hide from her. If I manage to at least talk about something that is useful it should be seen as a positive because in reality I know everything goes to utter shit in my head with regards to trust and connection in the therapeutic relationship when I’m on a therapy break.

I know it can take a while to feel secure in the room with her again. I just so deeply wish that just for once I could walk into the therapy room and immediately feel properly safe with her rather than being on edge and then having to spend time working out how things are ‘today’. I honestly think that something must have gone wrong between sessions and despite leaving most sessions feeling connected and heard I am sure that a shit storm is about to erupt each week when I arrive. Disorganised attachment really is the pits!

So on Tuesday I sat down and the first thing I said was, ‘I’m alright, I think, just about’. She picked up on the ‘just about’ inviting me to think about it, but it felt far too exposing to say how the break really was. I couldn’t tell her how much I struggled with missing her or how there had been times when all I felt capable of was hiding under the duvet and crying (but not being able to cry). I couldn’t explain how there had been times when I felt like the break would never end and I’d felt sick, anxious, lost and so so little that I literally felt my two year old self crying, wondering ‘where’s mummy? Why has she gone?’

I couldn’t find the words to tell her how the sessions leading into the break were difficult and had left me feeling precarious before the break had even begun. I couldn’t tell her that I couldn’t picture her in the internalising visualisation she’d sent me via text and that the message she’d sent left me feeling cold. It was too formal (BEST WISHES! -argh!) and made me feel like she didn’t really care. I couldn’t tell her anything like that and I certainly couldn’t get back to talking about the huge letter I had given her in our last session outlining all the problems I was having in the therapeutic relationship and why I had essentially shut down for the 6 weeks leading into the break.

We had spoken about the content a but there hadn’t been much time left once she’d actually read it and then the break began. It’s not ideal timing by any means dropping the honesty bomb right before the break, but I had to get it out my system and I guess on some level I knew doing it before a break would give me time to recover from it!

So despite managing to talk a great deal about my dad and the grief I was feeling and about that as well as some of the issues that had cropped up during the break in my everyday life, I didn’t talk about the stuff that’s been really bothering me and I guess that’s why I left feeling like things weren’t great. That’s what happens when you don’t say what’s really on your mind and talk about other (still) important things.

I know that in today’s session I need to try and tackle what the break felt like for me and how I was affected by it, but I know by now that it’s much easier said than done. I can have so much swirling in my head to say and yet, sometimes, I arrive and it just won’t come out. I so desperately want to talk but there’s that niggling doubt that holds me back, the voice inside my head that says ‘if you tell her really how you feel she’ll see what a needy loser you really are and then she’ll be gone’. She says that won’t happen, but how can I be sure?

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