Search

The Girl with the Daffodil Tattoo

A Welsh girl let loose in a wild world

Tag

pancreatic cancer

Music, Death, Life, and Lindy

A few months before my Mum died, I put some music on Spotify, and my mum said: “Ah great, I love jazz”. She told me about how as a student in Belfast, she used to go to jazz events in a hotel in the city by herself because her friends weren’t into the music but she was. I’d known her my whole life, lived with her for 18 years, and I never knew that she liked that type of music. I suppose that she was a private person, and I was a difficult teenager (which she always refuted, but I know I was a complete twat), but still. I felt grateful then that she was dying of cancer, and that we still had a few precious moments left together when she was (relatively) well.

In the last few weeks of her life, when she was bed bound, we put on playlist after playlist of jazz music (she also loved Abba and the Bee Gees, but those didn’t really seem appropriate). “Which music shall we ruin now?” we joked, knowing that this music would be forever linked in our minds to watching our mother get weaker and weaker, eyes glassy with morphine, smiling when she heard our voices.

She’s been gone two months now, and I miss her like crazy. I’m incapable of going to weddings (I’ve declined 3 invitations thus far, and will probably not be going to another two) because I just can’t bear the thought of her not being there to watch me tie the knot, disapproving of everything  but also quietly, fiercely proud of the woman I’ve become.

My boyfriend and I enrolled in a Lindy Hop class in January. We dance to the swing music, which we both love, and I think about my mum. I feel close to her then, and I know that I’m doing something that she never did but would have enjoyed before she got sick. I don’t dance perfectly, but I dance for her.

The Funeral: Monday 1st December 2014

Shock: a blanket that protects you from what’s right in front of you that you can’t face.

I woke up early, at 8.am I made a pot of tea, then I put on the bacon. I toasted the bread. 5 people, 10 slices of bread, 1 whole pack of bacon, defrost the other in the microwave. Cook the whole thing; might as well. In for a penny, in for a pound.

We waited for the “limo”, which is what they call the hearse for the living that follows the dead. We got in, shrouded in a nightmare. I said “I wish I’d bought my sick bag”. My sister suggested I change seat. I said “It’s not from the motion”.

The hearse was supposed to stop at a local pub, where the other cars would join the convoy. Why is it going past? Hey, stop! The others need to join.

We drove in semi silence, crying intermittently.

We arrived. The funeral director advised us to stay in the car, as it would be easier to go straight from the car to follow the coffin. I saw my friends hanging around the car park. My uncle commented on my male friend’s luscious locks. My dad offered to carry Mum’s coffin. She was the most independent person I had ever known.

We got out. I avoided eye contact with my friends. We fell in line with the coffin. As we entered the crem, I felt like when you are on a roller coaster, at the zenith, looking down. A great big “Fuck!” escaped from my mouth, blasphemy trying to kill my pain.

Standing at the front, I was rocked in wave after wave of pain. There was my mum, in that wooden box. The vicar spoke beautifully, something about believers getting to live forever. Mum wasn’t big on Christianity but she would have been happy with something so formal. I wished I was religious so that I could believe in paradise and seeing her again.

We stood. People sang. We sat. He spoke. We stood. People sang. We sat. I couldn’t sing because it was taking all my energy to stand at the appropriate times. I followed the words in the order of service instead. I hummed a bit. They said the Lord’s prayer. I looked outside, at the trees, because for me God is in nature. Amen.

The service, beautiful, formal, without a hitch, every second a living torture, ended. We went to the front. I kissed my hand, and touched the side of the coffin. “Goodbye Mum”. It was too much, I left first.

All in a line, thanking the people for coming. Familiar faces, less familiar faces. My friends were at the end. “How are you?” they said. I just cried.

First Pangs of Loss: Friday 28th November

I was in Boots, picking up some waterproof mascara for the funeral on Monday, and I overheard a girl bickering with her mother.

“Just say what you want then” she said, in an exasperated tone. Her mother mumbled something back and she said “Ok then. It’s not difficult. JEsus CHrist!”

Then it hit me. I was never going to argue with my mum ever again. I was never going to call her up to tell her my news, pre-empting it with “I know you’re not going to like this but…”.

My mum had deeply traditional views. She was educated by nuns in Northern Ireland, and although she had tried to escape their judgemental attitudes and threats of hellfire, brimstone, and general damnation, she still wasn’t a big fan of fornicating or homosexuality. Her dream for me was to marry some moderately rich, capable guy, who had a steady job and was good at filing tax rebates, like an accountant or a dentist. Financial stability was her obsession, and she would love for me to be with Mr. Collins as opposed to gambling on Mr. Darcy.

I believe that old JC (or Jesus Christ, as he’s known to the general public) was a socialist, leftie, egalitarian cool dude, who just wanted people to be nice to each other. I don’t think “homosexual” is synonymous with paedophile, and I 100% support gay rights, including adoption and marriage. I don’t believe in marriage and I don’t see a house and kids in my future. If I do have children, I want my partner to cut his hours and do his half of the child rearing. For me, marriage, with its inherent “forever” concept, was invented when women died in childbirth. I intend to live a long and healthy life, and to enjoy every moment.

So you can imagine our conflicts, our eventual stalemate. Towards the end, my mum mellowed considerably. Here’s a good example:

“So, I have something to tell you and you’re probably not going to like it but I don’t want to deceive you” I blurted, my heart pounding. I felt like I was jumping off a cliff. “After my six month trip, I’m going to Bilbao, and I’m moving in with Yoann”.

There was a prolonged pause.

“Oh.” she said. “Is that it? I thought you were already living together and just hadn’t told me”.

Oh Mother. You were always one step ahead.

Medium TV Programmes: Thursday 13th Novembr 2014

Mum likes to have the TV on while she’s in bed. She’s grown quite fond of the “ghosty programmes”, as she likes to call them, like Most Haunted, and ones where mediums pass over messages to audience members.

This morning there was a medium programme on in the background while I was giving Mum her morning tea. The presenter was talking to two women about their mother, and he said “she says to tell you that she wants to thank you for everything you did for her in those last three weeks”.

>It’s true you know.

>What’s true, Mum?

>Everything you’re doing for me.

I’ve been a bit watery recently, but Mum’s eyes are usually closed so I’d been getting away with letting some tears roll down my face while I was holding Mum’s hand and feeding her ice. She heard my loud breathing/sob and turned her face to me.

>Are you crying?

>Hmm.

I know she doesn’t like to see me cry. She’s only seen me cry twice about her health. Once when I came to visit in May 2014 and she was much thinner; it took me by surprise and I just burst. Another time when I was staying with her in the summer, and she was saying that I could give one of my children her first name as a middle name, a practice that she had always been virulently against before she was sick. When I cried, she would say softly “Noooo, nooo, don’t you cry. It will make me cry, and then if I start to cry, it will all be over”.

>There’s nowhere else I would rather be Mum.

>Thank you.

>I love you.

>I love you too.

Hideous Normality: Tuesday 11th November

Some nurses came to transfer Mum to a hospital bed. It’s inflatable with a control to alter head and leg incline. Apparently it’s much more comfortable.

The nurses were chatting to each other, and to Mum, as if this were a normal day and a normal situation. One commented how she hadn’t seen Mum in about 2 years. Mum confirmed it. “Yes, when all this started” she said. The other started chatting to me, asking me questions to see if we had met. Her face seemed so familiar. She asked me if I was the daughter who lived in Spain. I struggled to form a coherent sentence.

Sheets for the new bed? I’ll get them. These lilac ones are nice… Ah, but they’re worn and bobbly. Which one’s are the best? Which ones would Mum like to die on?

Have to get out. Have to get out. Shoes, shoes. Where are my shoes? Avoid everyone else. Don’t let them see you’re upset. Don’t be weak. Everyone feels sad but no one else is crying. Don’t be a burden on them. Phone, phone, where’s my phone. Got to get out of this place. Can’t breathe.

I left the house without my phone. The pressure in my chest was too great. I walked for about 10 minutes, to a gate in a hedge. I’d often stopped there on my walks, admiring the view of the Cheshire plains.

I leant on the gate and let go, letting the tears run down my face, leaning in to the sobs . Trying to keep it in is like trying to stop a tsunami sometimes. I’ve found that letting it out, getting it over and done with in controlled bursts, makes carrying on doing daily tasks easier.

I came back to the house, feeling tired but refreshed. It turned out that one of the nurses used to go to Guides, that’s why I recognised her. I must have seen her when I was small, watching my sisters with the older girls. And now, 20 years later, she’s helping my mum into her last bed.

Mum looked a lot more comfortable in the hospital bed. She slept peacefully until the next carer came.

DNR form: Tuesday 11th November

The overnight Marie Curie nurse came for the first time last night. She spent a long time going through Mum’s paperwork, asking me about what had happened over the past week.

>Did your sisters resuscitate your mum 3 times last week?

>Yes. She was managing her own meds at that point, and took a double dose by accident. She kept on nodding off and stopping breathing so my sisters had to wake her up.

Then she asked me about the blank “Do Not Resuscitate” form. “The district nurse must fill this in”, she said. I wholeheartedly agreed; Mum is in a lot of pain, and prolonging her suffering doesn’t seem right.

Euthanasia is something I am generally for. Allowing people to die with dignity (if that is what they have chosen) seems like the kindest thing, and I like to think that if I had a terminal illness, I would be brave enough to take that as an option. But then, maybe if I was in that situation, I would just want one more week, then one more hour, then one more minute. It must be incredibly hard for people to decide the “when”; I have no idea how people choose when to go.

I asked my sister in the morning about the DNR form. She said that Mum had been asked about it, and said that she “didn’t want to make that decision”.

All through this process, Mum’s denial of the situation has been iron strong. For the past few months, she has swung from saying things like “You see this bowl? I want the neighbour to have this bowl”, to being afraid of running out of money within two years and planning on moving house to free up some cash, all within the same breath. She even renewed her yearly phone contract a few months ago. Maybe that was her way of keeping herself going.

I can’t bear the thought of Mum stopping breathing and then some paramedic jumping up and down on her chest just because of a stupid piece of paper. She’s so, so unwell. I don’t want her life to end, but watching her confused and in pain is pushing me to my limit. I’m lucky my sisters are here, as they are both doctors; they know all the terminology, they can speak this medical language. I feel like I’ve been run over by a steam roller.

Beep: Monday 10th November 2014

I woke up early, at about 7:30. “Don’t check on Mum” a small voice inside me said. “She might be dead and you don’t want to find her”.

Unfortunately, there was a strange beeping coming from Mum’s room, so I had to go in to make sure she was OK. Her eyes were open, and she said the beeping had been going on for about an hour. It was the syringe driver, that little box with the tube coming out of it that was a shield between Mum and the pain.

I woke my sister up. Not only had she been there for the past week so she was familiar with Mum’s meds, she had just qualified as a doctor so she has generally more of a clue about this stuff than I do. (Prancing about “teaching English” for the past 4 years hasn’t really prepared me that well for my mum becoming a palliative care patient)

Beep. Beep. Beep.

The screen said “occlusion”, which apparently meant that the tube was blocked (by a twist or something) and the morphine and anti-sickness wasn’t being pumped in to Mum’s arm.

>Are you in pain?

>Yes.

My sister gently checked the tube, then pressed “yes” on the box. The beeping stopped.

Now it was time for me to watch my sister call various people, and listen to them all try to pass the buck to someone else. Typically, 8am is when people change shift in the hospitals, so no one wanted to drive out to help us.

>I finish in 20 minutes. Call the GP.

>I am a GP. GPs can only prescribe, they can’t do anything with a syringe driver.

>Do you have the key?

(the box is in a lockable case, to stop people fiddling with the dose. Kind of reminds me of expensive items at the supermarket that are in the anti-theft cases, like Venus razor blades and Jack Daniels)

>No. Do you?

>I don’t know where the house is. Can you come and pick me up?

>…..?!

>Ok. Someone can bring me to you now.

Surreal conversations. In general, the health care professionals have been really good, but it’s quite obvious (to my sister, who has worked in different regions of the UK) that the palliative care resources in our area are stretched thin, hence why getting anyone to do anything is quite difficult, and also why there is no bed free at the hospice for Mum and she is being looked after at home.

It turned out that my sister had done the right thing, but that my mum’s dose needed to be increased. The district nurse came and he made it all happen. He was competent and he was kind.

Mum settled down again and seemed much more comfortable.

Arrival: Sunday 9th November 2014

I let myself in with my key, and gave my sister a big hug.

>Thanks for coming.

>Sorry I didn’t come sooner.

>I didn’t realise. I thought she would get better.

>Thank you for everything you’ve done.

I walked in to my mum’s room. I can’t really describe what I found there, mainly because she is one of the proudest, most independent people I know, and she wouldn’t want me telling anyone how she looked or how we helped her to do things. But I can write this blog post because she was always quietly ELATED that I had a blog, and dreamed of me becoming as famous as Terry Wogan. I’m writing it for her in a way, even though she will never read it.

She was calm, and she wasn’t in pain. They had installed the syringe driver a few hours before, which meant that she had a tube coming out of her dressing gown and a box on the bed about the size of four packs of cigarettes.

This was it. This was the moment Mum had been dreading. When she wouldn’t be able to get out of bed, when she would need help doing everyday things. The worst had finally happened.

It was midnight. As I sat on her bed, I had a sudden temptation to laugh, hysterically. Not because it was funny, because it definitely wasn’t, but more in a “FUUUUUUUUUUUUUUUUUUUUUUUUCKING HELL” way.

My sister chattered to me about visits, about what had been happening. She must have been so lonely here  by herself, with only the phone ringing every hour for company. With kindly, but unknown, professional strangers coming in and out, calling on the phone to check up on what was happening, what had already been done, or get directions to our house that no GPS on earth could locate.

It was OK. I was there now.

Bilbao-Manchester: Sunday November 9th

The flight was at 21:30, so I decided to stay the night with a friend in Manchester and get the train the next day. Just as I had bought my train ticket, my sister whatsapped me.

>Get a taxi from the airport. I’ll pay.

I called her. She told me that they were putting in the syringe driver that evening (which is like a battery powered morphine drip). She had already told me that that was the final stage in a palliative care patient’s life, when someone can’t swallow all their meds anymore and needs them intravenously.

Throughout the whole trip, all I could think was really stupid things, like why the word “funeral” starts with “fun”. I didn’t want to talk to anyone, or make eye contact, or smile.

I hadn’t paid extra to choose a seat, so I was right at the front, which was annoying because it was cold while the airplane door was open, and being an emergency exit meant I would have to put on my coat and put all my bags up. I don’t really like to put my handbag in the overhead lockers, so I took out my passport and put it in my pocket, just in case. I listened to the stewards chatting quietly to one another calmly, gossiping and sharing jokes, as if it were just a normal evening flight.

As we landed, I realised that being right at the front meant that I could get my bag and be off the plane without waiting for everyone else to finish faffing in the aisles. My belt was undone before everyone else’s, and I was off that plane like a rocket. I saw curious glances from my fellow passengers. All I could think about was the taxi waiting for me, and giving my mum a kiss when I got to her house.

Blog at WordPress.com.

Up ↑