Rubber Bands and Chewing Gum

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 32^nd 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.