Monthly Archives: October 2014

Money and Mental Health: October 2014

One thing about living far away, is that you can’t just catch a train or drive over. I hadn’t considered this before.

In July and August, I spent 7 weeks with mum, pottering about, clearing out the house a bit as I know I will be too broken to do that when she passes. September and October, I’ve been spending half the month with Mum, keeping her company, making her nice food, and half the month in Bilbao, resting.

I need my two week breaks. Sometimes I’ve been depressed, and I’ve lain on the sofa/in bed, unable to get up or do anything much. The irony of me being too depressed to talk while my mum stands in front of me, smiling while dying of cancer is not lost on me. I think: “You’re pathetic. You’re weak. Pull yourself the fuck together”.

My home town is full of familiar faces, but none of them are close friends, and it’s kind of odd to be like: “Hey! My mum’s dying. How’ve you been for the last… 8 years?”. It’s a gossipy place, and I don’t want people to know how badly I’m doing, and that I’m vulnerable.

I don’t know how people work while they have shit going on like this in their lives. At first I was living on savings while doing some casual work, but now my savings have come to an end I’m borrowing money. Who knew that death is so financially straining. Let alone the huge emotional toll.

Then I feel guilty. I’m worrying about money while my mum can’t really eat, and is getting weaker every day.

I’ve considered going to the GP to get some pills/CBT for depression and anxiety, but there are various barriers to this.

1. Making an appointment

Now I’m living in two places, making an appointment with a doctor can be tricky. Also not sure if it’s better to do it in English or Spanish. English is my native language so it’s easier in some ways, but sometimes talking in your second language can give you the freedom to express yourself.

2. Drugs don’t work, they just make you worse

The anxiety is the thing I want to work on, but depression related anxiety isn’t actually helped by anti-depressants, it’s more of a long term condition helped by CBT, as opposed to a chemical imbalance in the brain. And as for sessions with a psychologist, see point 1.

3. Waiting times/cost

I know from experience of friends that getting therapy on the national health for mental illnesses is extremely difficult, with a long wait time. I don’t mind paying but I have this image of the psychologist being like a car mechanic who opens the lid of the bonnet, sucks in air loudly through his teeth, shakes his head, and says: “pffffffffffff, this is going to cost you”.

4. My mum is dying…

…so I have a real reason to feel like throwing myself under a bus, or feeling a pain in my chest, or experiencing physical symptoms of stress. This is natural. Isn’t it?

I kept a note of how many black days I had had, and how many days there was a vice on my chest. Over 30 days I had had around 14 or so, so I decided to take extra special care of my mental health and wait it out before offering myself up for a chemical lobotomy voluntarily.

It’s not that I don’t believe in drugs. I love drugs. I just think that “modern” psychiatry is still in it’s early stages and I don’t want some over-paid paperwork monkey fiddling about with my brain.

Maybe this problem is exacerbated by my own recreational drug use back in the day. It’s hard to tell, and I don’t have a time machine to not have done that. What is done is done. But I’ve decided to not drink until I feel less stressed, like I want to rip the cigarette out of the mouth of every smoker I see and put it out on their face.

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Back in Bilbao: August 2014

I came back to Bilbao to spend time with my boyfriend. His parents had planned on spending a week with us, and I didn’t want to miss seeing them. They are fun, and very kind.

Unfortunately, my brain felt like someone had put it in a blender, which was quite inconvenient for speaking foreign languages, cracking a smile, or standing up and walking around like someone who wasn’t a depressed zombie. His parents understood, and I made a huge effort while they were staying with us. I didn’t cry all the time, lying in bed, thinking of chucking myself out the window. I think I managed to achieve about 40% normality.

Yoann wanted me to meet his best friend, a Basque guy who is living in London for a bit, but was back visiting. We went and met him and “the gang”, the tight knit group of school friends called a “cuadrilla” that the Basque Country is famous for.

They tried to make conversation with me and be friendly, and it was the first time I had spoken about Mum’s illness in Spanish. Instead of saying “I’m so sorry your mum is sick”, they kept on saying “How is your mum?”, which took me aback. I didn’t really have a socially appropriate response ready, and I felt like the question was twisting the knife. If this had been in English I would have said quietly “dying”, and changed the subject. I felt deeply uncomfortable mingling and making small talk while my mum struggled to eat.

I’ve felt like a puppet whose had it’s strings cut, off and on, for a while now. Keeping busy has kept me going for a time but now I can’t do much for Mum I feel like throwing myself out the window. This isn’t too bad when I’m in her house, as she lives alone in a bungalow, but in Bilbao we live on the fourth floor and I feel like people are looking at me and thinking “What is wrong with this güiri?”, and I want to reply and say “Everything”.

Useless, depressed, and I don’t even have cancer: August 2014

First my partner left, then my sister left, then my other sister and her boyfriend left. Now I’m alone with Mum and it is killing me. I cook for her twice a day. She’s not able to eat much and she’s convinced that certain foods are causing her to feel sick. Vegetables with the skin off. Lacto-free milk and cheese. Diabetic icecream. Nothing works and Mum continues to be in pain. I feel useless, unable to do anything to alleviate her symptoms.

I feel grateful that we are getting this time together, and that time has been running out for us to get to know each other before she passes. We’ve had some good chats, as adults. I’ve listened a lot, which is new… I liked to talk before, but now I’m more interested in what she has to say.

She likes to tell me how, although she loves us, she wouldn’t have children, if she could live her life again. Or if she did, she would only have two. Although I’m her third daughter, I don’t take offence to this. I find it funny as I have no plans on having children, although that may change. (Who knows, with all the medical advances, maybe my partner can carry our child and give birth to it, seahorse style. On second thoughts, Junior was a terrible film, so best just steer clear.) “You can be happily married without children” my mum says, sagely.

She’s refusing to start care on every possible grounds she can think of. She says she doesn’t have the money (even though it’s quite cheap in our area), then she says she would rather give me the money, which makes no financial sense as it would barely cover my rent on my flat, in Spain.

I’ve felt like I haven’t been able to take a long term job as I want to keep the freedom to come and spend time with Mum, but I definitely did not want to be left to cope with Mum alone, and to gradually start doing everything for her. She normally has prescriptions delivered, but when there has been a problem, I have gone to get them. Pharmacy, GP, pharmacy, home, don’t cry don’t cry don’t cry don’t cry. The doctor’s surgery Mum is registered at is a big, semi-impersonal practice, with a dickie fax and a problem with misplacing prescriptions. The thought of Mum being left without morphine makes muscles in my stomach contract as if a phantom has kicked me in the gut.

I decided to leave. I realised that my taking care of Mum had become enabling. I was only helping her to deny reality by not starting/accepting care, and as much as I had tried, I felt lonely, I felt depressed, and I missed home. I hadn’t lived in my home town for 8 years, and I didn’t want to start now, when I was feeling psychologically vulnerable.

I told Mum I had a job interview and was heading home to the Basque Country for a few weeks. Mum and I had a blazing row. I said some things that were true but unkind. She was very very angry. I think she was most angry that, for the first time in her life, she needed someone else; she is such a proud and independent person.

“I don’t want a carer. I don’t need one.” she said. “I don’t want them touching me and talking down to me. They speak to me as if I had lost it. I don’t want them touching me ever. I couldn’t bear it”.

I lay on the sofa, unable to get up, unable to watch TV. I was depressed and unable to stand or contemplate doing simple things like making food or even checking my phone.

Finally the day came to leave and I dragged myself out of my pit. Mum’s wrath had been appeased by Deborah’s arrival from London later in the day, so I kissed her goodbye, hoping it wouldn’t be for the last time.

Palliative Radiotherapy and Summer Christmas: July 2014

The oncologist has said that Mum’s prognosis is 6 months (to live). One can never be sure; it could be six weeks or six months. My sister (who is a GP) explained to me that people usually plateau, worsen gradually, and also very sudden things can happen.

Mum was scared going for the palliative radiotherapy. They told her that it wasn’t painful, and just like an x-ray. This was only partly true.

The radiotherapy, attacking the cancer in her spine, had caused the tumour to swell, causing agonising nerve pain. From my house in Bilbao, I did the best I could. I called a carer and paid her to be with Mum as an interim, before state care started.

Mum got worse and worse. We thought she was going to die. I was supposed to be working at my friend’s summer camp for the 4 weeks of July, so I told her I could work 2, and then just 1. I really thought that Mum might die.

My sister arrived a few days after me. She told me that I had arrived just in time, and that Mum had been dangerously dehydrated, and her kidneys could have shut down.

I had it in my head that Mum was going to die, so I went a bit mad “doing things”, e.g. keeping busy to not face my feelings. I got the house ready, clearing out the fridge and the cupboards, restocking them with food, trying to get rid of excess stuff (it was hard to get anything in the cupboards as there was so much stuff everywhere).

In a few days, Mum was feeling much better and  able to walk around and eat her child-sized portions again. My sister’s partner came, my partner came, my other sister came. With all of us being together, we joked it was like Christmas. We had a big roast dinner together, and mum seemed very happy, despite her pain from the cancer, and the nausea caused by the morphine.

I didn’t take any photos because Mum always hated photos (for as long as I had known her, anyway) and I didn’t want to see a scared look in her eye as she shied away from the camera.

We all had a wonderful time together, laughing and joking. Mum was smiling from ear to ear, asking her perspective son-in-laws questions and laughing along with the banter.

The cancer came back: May 9th 2014

On May 9th, 2014, my mum told me that her blood tests had come back positive for her cancer having returned. I’m not great at remembering numbers, so dates usually escape me, but I know that that was the date because it was my 26th birthday. I hadn’t called my mum as I’d been travelling (I’d had an amazing opportunity to go to New York), and I called her on my birthday. She told me immediately partly because she was in shock and had forgotten what day it was, and partly because I had made her promise at the start of this that she wouldn’t bullshit me, nor hide how ill she was, not even because I am “the baby” of the family. I thought I was strong enough to take it.

When she told me the cancer had come back, I felt like a cartoon character who’s had a giant rock fall on them. Tears were rolling down my face while I struggled to keep my voice even, and I told her I loved her. I asked if there was anything I could do for her, and she asked me to call more often. From then on, I called at least once a day most days for a chat, just to keep her company.

Mum said she had to go because she was very tired, so we said goodbye. I lay on the sofa, and I cried, and cried, and cried.

Telling Friends and Acquaintances

>So, there’s one more role left. Anyone able to take it? Sarah, I’m looking at you.

>Erm, I can’t at the minute.

>Come on! Why?

>Errrr. My mum has been diagnosed with pancreatic cancer. I don’t know how long I’ll be in this city for.

<Silence>

<Responses involving survivors>

>Heeeeeey. You’re back at home! How come? Shit round here innit. I’d escape again if I were you.

>My mum’s cancer came back. I’m here off and on until… the situation is resolved.

<Silence>

<launches into story about someone who survived>

I hate awkward silences, which is why I’m not big on sharing my emotional pain in public. People often ask why I’m back around my home town, and I’ve learnt not to go in to too much detail, and just use neutral code words like how the “situation” will be “resolved”, and not the thing I think that makes me well up with tears, like “when my mum is dead”.

If your friend/acquaintance tells you that their loved one has a really aggressive form of cancer, don’t start to tell them about people who survived. I really don’t find this helpful. Here’s why.

Hearing about people who “fought” cancer and “won” is misuse of language from a privileged perspective. What you actual mean is that you know someone who had a type of cancer that was treatable by modern medical developments. It’s sort of like saying to someone in a wheelchair: “Well, I can walk. So you can too”. And then doing a wee dance.

Pancreatic cancer is one of the most aggressive cancers and it has a 5% survival rate. This means that 5 years after it is first diagnosed, 95% of people are dead. So… fuck you and your fucking treatable cancer. Go do a run and wear a specific colour and make yourself feel like you’re “fighting” it, while other, presumably lazier or just generally less worthy people, don’t “fight as hard as you” and die.

I’m grateful that no one has ever told me to “stay positive” about the situation. I probably would have lost my rag, ranting on about how much pain my mum is in and how awful it is for her to be losing strength and mobility every day. “Take your positivity and shove it…” would probably by how I would finish.

And how am I? If I’m really honest, I feel like a bath.

My life is a bath, and her illness has taken the plug out. I’m a social person, but now, I don’t really want to talk, especially not to new people, those who don’t know the situation, who ask me normal questions like “What’s your job?” and I say “It’s kind of complicated at the moment”.

It’s nothing personal, but I can’t be around people just now. My body feels full of black dust and I don’t want to get you dirty. I don’t want to laugh, and dance, while she lies in bed, her face twisted with pain.

A cup of tea with Mum: June 2013

It was the first time I’d seen Mum since her operation and the chemo.

She was rake thin and walking with crutches. The house had been adapted for a disabled person, with bars and stuff put on the wall, chairs on mini stilts, something on the toilet to make it higher.

The nurse came to change the dressing. Mum lifted up her shirt to reveal her thin, thin body. She had never been fat, but now she was like a skeleton, like a leaf that could be blown in the wind. Her hair was long and grey, even though she liked it short, as she hadn’t been able to go to the hairdressers. She was missing a tooth at the front, from the stress of the treatment. She said it had just fallen out of it’s own accord.

Seeing Mum again had affected me more than I knew. The next week I was working at a learning English residential camp, sharing a room with someone else, working long days and feeling under a lot of stress. I started to sleep walk and sleep talk, and I felt close to the edge of tears most of the time. I felt so awful, I should have left. But kept quiet and didn’t.