There are all these people here I don’t know by sight or by name. And we pass alongside each other and don’t have any connection. And they don’t know me and I don’t know them. And now I’m leaving town and there are all these people I will never know. – Carson McCullers
If you have ever spent time in hospital you will know how the day stretches out in front of you …… it feels endless….
There is a saying ‘She’s up before her breakfast’ meaning a person is an early riser and has all the news before anyone else. Well it’s a bit like that in hospital. I was up hours before my breakfast each morning.
When you have been awake from 6am, had bloods taken, a new delivery of a water jug, a brief chat with the nurse or orderly, the room goes quite again and so your breakfast is one of the highlights of the morning. Now I couldn’t tolerate any food trays at all so I didn’t even have the meals to break the long long looooooong days!
I was also in an isolation room by myself. My window looked out on another building, a concrete jungle. I had to keep the door and the window closed so I was shut away from the sounds of a normal day in Dublin.
For almost the entire month of July 2007 it rained, so I was mostly looking out at rain drizzling down the window. Any time I turned on the radio they seemed to be playing Umbrella by Rhianna.
When I was packing for hospital I had the following to keep me busy/amused/diverted (as one says in the costume dramas):
- books (as I am a big reader)
- iPod and docking station so as I had ambient music
- a mini DVD player which we had for long car journeys for the kids
- my PSP console with two games
- a journal for writing
I also had a TV which I had to hire from an external company providing this service to the hospital.
The hospital room itself is very simple. There was a bed, a built-in wardrobe, a table across the bed (adjustable in height), a small side-locker, two chairs for visitors, a sink, and, an ensuite with a toilet and shower. There was a window sill around a recessed window and I was able to store books on that.
I wasn’t allowed any flowers. Any gifts being brought into me had to be de-bugged/de-germed at the nursing station (alcohol wiped) because I was at such a high risk of getting life-threatening infections.
On my bed was a pile of tissues and a plastic basin. The plastic basin was a permanent fixture for vomiting bouts which struck several times a day.
Existing inside this space was a huge challenge for me. Ordinarily in life I am someone who never sits still. I like to be out and about, going here and there, seeing this and watching that, meeting people, seeing friends and family. Being locked inside a room for almost an entire month was not something I had ever planned to do. At times it was the cooped up feeling which was the biggest challenge for me.
There were days when I slept a lot and where I wasn’t really able for any of the entertainment I had taken in to the hospital room. Mostly I wrote in my journal and listened to music. Liam Lawton, Jackson Browne, Brian Kennedy, Sarah Mac Lachlan, Ingrid Michaelson and Paul Simon were some of the voices who soothed me on days when all I could do was lie there. Reading texts from people and opening letters which came in the post also kept my spirits up.
There were days when the TV was on just for company in the background. I couldn’t watch anything to do with food. I couldn’t even watch the adverts if they were about food so I would flick or close my eyes. I used to watch Murder She Wrote, and Grey’s Anatomy re runs. It did feel a little bit absurd to be in a hospital room whilst watching a hospital drama. But Doctor McDreamy did help to break up the monotony of the room.
Visitors were always so welcome. I was determined for the family situation to stay as normal as possible and therefore I didn’t want Bryan taking weeks off work for me. I also wanted him at home with the kids when he wasn’t at work and I got tired easily so it was hard on me to have someone beside me all day. But I did love the company and my younger brother Conor used to come out and just sit with me for hours at a time. I know that the things going on with me were very difficult for him to watch. My Mum told me months later that there was one particular day in the middle of July when Conor was with me and I had a very bad episode of vomiting. He stayed with me but later when he had said goodbye he called our Mum and said “Brenda’s very bad today”. There was another day he came to see me and he wasn’t allowed in because he had a sniffle. When he reported to the nurses station they took one listen to him and said he wouldn’t be allowed to see me. That was tough to know he was just outside the door, but that he couldn’t come in! It’s hard on the visitors too after they make the effort but the best interests of the patient has to come first.
I didn’t have Facebook or Twitter at the time. It is probably just as well as I am not sure how many followers/friends I would have left, if I had shared all that was happening to me in real time.
Hospitals are so busy nowadays that nurses just don’t have the time they would like to have to sit and chat with patients. That’s a huge shame because those chats and interactions are part of the healing process.
I still received so much care and attention from the wonderful staff of Maguire Ward. There were nurses and doctors in and out of my room all day. They were always concerned about how I was feeling and were always trying to figure out what more they could do for me to help with the side-effects of the chemo. During the day when I rang my emergency button, it could be any one of a number of staff who would attend. I got to know some wonderful nurses during the four weeks I was in there. My doctors were constants in my care all the way through the stem cell transplant.
But, it was during the night time, even though there were fewer staff, that there seemed to be more time to chat and to just be with them. Anytime someone came to attach or remove something from my line in my chest, they had to use a special kit which would involve cleaning, putting on gloves, and not touching my line with their bare hands or anything non-sterile. It was quite a task to sort out my meds and my food and they had to go through this several times a day.
I wished at the time that there might have been some sort of art and craft to distract me from the awfulness of my situation. But then again I was so sick for most of that transplant month that I am not sure I would have been able for it. I was thrilled to find out recently that they are in fact looking more at art therapy in hospitals and that they have an arrangement now in Maguire Ward for patients to take art. I would love to see more of that. It would have been lovely too to have had someone to read to me during the day, when I was too weak to hold my book up.
So if you know someone who is in hospital please consider visiting them, writing to them (in the real mail) or emailing them, texting them, or gifting them a song (just not Umbrella by Rhianna). It’s the little things that can make all the difference during the long lost days and weekends in hospital.
I need to offer a few words of thanks here to my friends and colleagues who helped to save me from the isolation and the lost days:
- To Bryan – for everything
- To Sara – for visits, for foot massages, for helping me with my first trip out of my room and for all the lovely notebooks.
- To Anne and Nuala – for the Drench drink.
- To Anne and Father Martin – for being there while I cried.
- To Rachel – for the foot spa and the rouge noir nails and for being my drinks supplier.
- To Emma – for pictures and for good night texts.
- To everyone who sent me letters and cards.
- To Sharon and Sheila – for the balloons on an especially bad day.
- To Auntie Jo – for the magic powder from some sacred which is supposed to help women who are having issues conceiving a child!
- To Marian Keyes, Pauline McLynn and Peter Kay for making me laugh with their writing.
- To Mum – for the ice cold drink sent frozen from the freezer on a day I was feeling low low low.
- To Doctor McDreamy and Jessica Fletcher.
- To Father Kevin for the holy water from Lourdes.
- To everyone who texted me…..
- To everyone who prayed for me……
There are no words to adequately say what your small acts of kindness meant to me…. I will repay you all…..