Chapter 30 – Getting through a hospital day

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.

jessica-fletcher-face4mcdreamy

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…..

Musings – The latest check-up

Nothing will sustain you more potently than the power to recognise in your humdrum routine, the true poetry of life – the poetry of the commonplace, of the ordinary person, of the plain, toilworn, with their loves and their joys, their sorrows and griefs. – Sir William Osler

I had a call a couple of weeks ago from the haematology department of Tallaght Hospital. The person on the other end of the phone said “I have bad news for you”. Right says I, go on, but I could feel my heart racing. Then he calmly said “we have to change your appointment to October instead of next week”. Well I could have killed him. You don’t say something like that to someone like me, who is always expecting the news to be serious.  But it gave me two more week’s off the hook so every cloud and all that.

But then last Thursday it was time to head off again to get bloods done, and to have a chat with my consultant. It’s the same routine I have been keeping since about 2009 when I was allowed back to a reasonable length of time between hospital appointments.

I saw Emma off to college early in the morning and then Cathal went off on the bus to school. It was just me then so I sorted the cats and headed off. I was listening to RTE Radio One on the way to hospital in the car and I can honestly not tell you even one story that was on the air that day. Then it was time for Tubridy and again, I can’t tell you what was being talked about. There is only ever one thing on my mind on these days – will today be the day?

I was feeling okay apart from some tiredness. Could that be to do with the bloods not being good which might be to do with the myeloma being on the march again?

Each time I go I get the results of the current bloods which are taken on the day I am visiting the hospital. But, there is one result which takes time to come back so each time I get that result it is two month’s out of date. That’s the result that tells me what the myeloma is doing. It’s the one all about the free light chains, the para proteins.

So I had the bloods taken after sitting in the urgent queue – it’s for special customers only, those who have an oncology or haematology or some other appointment to go on to that same morning. The secretary remarked that she hadn’t seen me for a while – you see there is a big difference between eight and ten weeks!

After bloods it was off for my usual treat of some OJ and a banana and walnut muffin. Then it was upstairs to register for the rapid access clinic. On the way up in the lift a man started humming Any Dream Will Do which just seemed so out of place but as I left the lift on level 3 I found myself humming it too. I was delighted to have been infected by music and hoped it would be the only infectious thing I picked up while in the hospital.

Check-in was taken care off and I sat down to wait. I seem to bump into a lot of the same characters all the time and I have taken to naming them for myself. On this particular day there was Grumpy Guy, Old-Fashioned Lady who sat down beside me and blurted out for everyone to hear “What a gay day”. Then there was anxious hubby who was fussing over his wife and so on.

Usually I don’t bat much of an eyelid on the other patients. It’s not exactly a place where conversation is flowing as we are all carrying our own particular nerves within, almost too afraid to verbalise them.

But then a young man arrived up with his mother and I was so taken aback that I wanted to go over and hug him. He was whiter that the whitest white you can imagine. He looked gravely ill. The nurses took one look at him and pronounced him to be only fit for one of the beds in the day ward. He couldn’t have been more than 19 or 20 and was probably a recent transfer from the children’s section. I haven’t been able to get him out of my mind since I saw him. I remarked about him on my Facebook page and a friend of mine said that he remembers feeling the exact same thing when he saw me about a fortnight after my transplant. I too was whiter than the whitest white you can imagine and he worried for me and whether I was going to make it. I am hoping that young man has the same luck as I have been having and that he will be sitting in my seat someday….. But if you are the praying type, please pray for him.

Anyway back to my results which arrived after a two-hour wait. I wish there was something to do in the hospital while you are waiting – like a table tennis table, a craft table or something to take your mind off the results – like a relaxation zone. Adults need things like this too. If you could be paged in the relaxation zone to come just at the moment the consultant arrives, then that would be amazing.

So I get called from my seat by my consultant and he tells me immediately that everything is okay and that the bloods are all fine and that the free light chains are grand. Then he apologises that he doesn’t have more to say to me. I assure him that these short and sweet conversations are all I need. He muses over whether he will allow me slightly longer between each visit and then decides that he won’t as his gut feeling is to continue to see me every eight weeks. That’s fine by me. I assure him that it is a small price to have to pay for peace of mind. We shake hands and I am off the hook, again for another eight weeks.

I really wanted good news this time. Well I want good news every time but this time in particular I wanted it more as it means I can say that the eight year remission is holding steady.

It was onwards with life and back to work – for another eight weeks.

B 🙂