Chapter 13 – In Isolation

To live is the rarest thing in the world. Most people exist, that is all. – Oscar Wilde

This is the continuation of my diary entries from when I was in hospital for my stem cell transplant. I have transcribed these exactly as they were written during those days.

Wednesday 11 July 2007 (Haemoglobin is 9 and falling. Creatinine is 169)

I am neutropenic from today which means I have no ability to fight any infection – even a cold. There are all sorts of precautions in place to protect me. No one with a cough, cold or sore throat is allowed in to me. Nurses and doctors have to wear gloves and aprons. Cleaning staff have to do the same and some of them have masks on when they come in. My door has to be kept closed and my window too.

I am glad it’s raining as it would be torture to be in here if the weather was any way nice.

Today marks my first week in hospital and I feel so very tired. I feel as though I have run a dozen marathons. I still can’t eat, can’t stand the meal trays even being in the room. Today I can’t watch any food programmes on telly and Bryan has been banned from talking about any food when he comes to see me.

I was moved from Room 33 to Room 22 today – I think they are moving me closer to the nurses station.

I saw my kidney consultant today and she is happy enough that my kidneys are holding their own. There is no talk of dialysis yet which is a huge relief.

For some reason I keep hearing a Bruce Springsteen song in my head today. It’s the one about If I Fall Behind……. I don’t want to be left behind ……..

[This is the song I was hearing: If I Should Fall Behind

We said we’d walk together baby come what may
That come the twilight should we lose our way
If as were walkin a hand should slip free
Ill wait for you
And should I fall behind
Wait for me

We swore wed travel darlin side by side
Wed help each other stay in stride
But each lovers steps fall so differently
But I’ll wait for you
And if I should fall behind
Wait for me

Now everyone dreams of a love lasting and true
But you and I know what this world can do
So lets make our steps clear that the other may see
And I’ll wait for you
If I should fall behind
Wait for me

Thursday 12 July 2007

Had a long chat with my haematological consultant today and she told me that she admires my spirit. It’s a bit of a comfort but I feel like I am in hell right now. All I want is the vomiting and nausea to stop. They are trying everything to make it stop but it just won’t.

Friday 13 July 2007 

Day 9 in the stem cell transplant house. Brenda woke and discovered that the foot fairy had been in during the night and had given her a manicure with Chanel Rouge Noir nail varnish. I feel like crap but I have the best looking toes in the hospital. My sister arrived in and gave me a pedicure the night before.

I think I was writing this in the voice of the Big Brother narrator:

8.45am brenda’s head is in a basin again, she is vomiting!

8.59 am The newest arrival in the stem cell transplant house is a nosebleed. Brenda is however, relieved as the bouts of explosive diarrhoe have stopped for the past two hours.

9.02am Most of Brenda is in bed! This week’s task is to stop vomiting and to keep tablets in. So far Brenda is failing the task and she will have to survive on a ration of sips of water for the next week.

10.10am Brenda is vomiting again

4.00pm Brenda is vomiting again and the explosive diarrhoea has returned.

12 midnight – Just when you thought it was safe to go back in the stem cell transplant house – Brenda is vomiting and has diarrhoea again.

JUST EXHAUSTED

Saturday 14 July 2007

Vomiting and diarrhoea at 7.20am. I can’t make it to bathroom as I have two lines attached to the line in my chest. I have an anti nausea drug pump in my arm and another in my stomach. I have no energy. I grab the basin that it permanently on my bed and grab the commode beside my bed which is my toilet. I don’t even know what I am vomiting as I have not swallowed a single thing since July 4th.

I have now started to wear an adult nappy as I am getting no warning of when the vomiting comes and once I start to vomit I lose control of everything else. It’s not exactly what I planned or expected but I have no choice but to go with the flow – literally!

I just tried to swallow a tablet as I want to try to make progress and it got stuck and came back up with blood! Very frightening. I am really raw now in the gut – the book said that would happen. This is the gut breaking down.

A nose bleed started at the same time. I am finding it very very tough at the moment. It’s hard to smile. I have no energy so I am struggling to speak. It must be so hard for Bryan to see me like this. I am a monster. The chemo is completely brutal and I don’t know how much more of this I can take. I am trying to be brave but it’s hard!

Each day I hope will be the start of me feeling better! I miss the simple things. I miss drinking a glass of water, or a glass of ice cold coke. I miss the feel of fresh air of being outside feeling the wind and rain on my face and hair!

I miss Cathal so much – his little face and his arms around my neck. I miss his kisses and the smell of his hair. I even miss changing his nappy with his kicky little legs flailing everywhere. I miss sitting on my couch and I really miss sleeping in my own bed. I miss the sound of my cat Watchie purring on the end of the bed. I miss the security of Bryan in bed beside me, even if his snoring sometimes keeps me awake. I miss Emma and the noises from her bedroom, her jokes and just hearing how her day was.

Sunday 15 July 2007

I got 2 units of blood and 2 units of platelets

I  am sitting up in bed having just vomited and bled all over the place. My nose has been bleeding since yesterday and it just won’t stop. It’s a very constant drip drip drip and it’s wearing me out. I need platelets and a blood transfusion. My blood counts are zapped. Sara is on her way. She was early and brought me foot cream. She gave me a foot massage which literally sent me to sleep.

Bryan arrived with my special order of dilutable drinks – ice cold from the freezer at home. I still can’t swallow but I take a sip and taste it and then I have to spit it out. My stomach hasn’t tolerated anything since 4 July – not even water now.

 I am being fed by TPN food in a bag which is going in via one of my lines. It looks like a bag of milk and I feel so weird looking at myself being fed like someone in a coma.

My nose has been bleeding all day. Drip drip drip flood. I have destroyed the sheets and my PJs.

Monday 16 July 2007

2 units of blood and 2 more lots of platelets.

I am disappointed that I am still so sick all the time. It’s difficult. I didn’t sleep last night as my nose bleed all night. They tried ice and pinching it but it is a steady stream now all the time. I have destroyed my pajamas and the bed so many times I have lost count. It’s a constant flow.

At lunchtime I was taken to see an ear, nose and throat person in the clininc. I am still neutropenic so I was rushed through the waiting area behind a mask which filled with nose blood. There is nothing that can be done as I just have a general ooze from having a zero platelet count. Platelet transfusions should help. I was given a nasal spray which I tried and then I was rushed back to the room so as to avoid picking up any infection or being exposed any longer than I need to be. There is still no sign of my nose bleed to stop. It is a constant drip drip drip, like the ear nose and throat doctor said – it’s a general ooze. I have had more bood and platelets so hopefully things will kick in soon.

Monday 17 July 2007

Vomited at 8am

Vomited at 9.30am

Vomited at 12 noon

Vomited at 4.00pm

I got very distressed this morning early and was finding it hard to breathe. It’s the zero blood counts and the feeling of panic from the constant nose bleed. They put me on oxygen for a few hours.

I have this constant craving for juice and nice tasting drinks but now everything I taste stings my mouth as the lining is all ulcerated and crusted.  I still need to taste something and then spit it into the basin.

I decided today that I wanted some Club Source drink so I put out an sos. My brother Conor has been acting as my drinks courier supplying me with what I need and crave. My sister has been my other supplier. I can’t swallow any of what they bring but I can swish it around inside my mouth for the taste and the I spit it out. Each day brings a new craving. So far I have been through: 7up, coke, dilutable orange and blackcurrant, ribena, club orange, lilt (but that was stinging my mouth), Fanta. It’s  keeping my mind busy deciding what’s next.

I am feeling a bit of despair as I thought I would be past the vomiting by now. My consultant and registrars Dr Sean and Dr Larry keep reassuring me that there is no date by which I should be doing this or that. I will come right in my own time. It’s difficult to keep going.

Somewhere I have lost a day as they put me on some really strong anti sickness meds which made me feel like I was floating and seeing people who were not actually in the room.I have been floating around the room, hearing and seeing things and saying a lot of very silly things.

Wednesday 18 July 2007

2 units of blood

2 pools of platelets

My sister Rachel is coming out to me tonight with drinks. I now have a small fridge in my room to try and cool down my drinks.

Sometime over the past while my eyes have filled with blood – it’s called an optical haemmorage. It looks pretty awful but they are not painful. I have the look of a celebrity sitting up in bed with my dark glasses on, as though I am recovering from secret cosmetic surgery.

I feel today that I am starting to do okay. The good news today is that my neutrophils are up (this means I am moving in the right direction and away from the need to be in isolation). My blood counts have started to recover – the stem cells are doing their job. I can have my window and doors open now for the first time in a couple of weeks. I have a slight temperature so a blood culture was taken to see what’s going on.

I put out an SOS for Club Source and I have had two deliveries from Nuala and Anne. They are marvellous and went out of their way to get it. It’s just doing the job. I still can’t swallow any of it but it tastes fantastic. I wish they sold it in the shop. I actually rang the company today to see if they stock it or would consider stocking it in the hospital shop. What am I like? The cravings are just terrible – fruits, fruits, fruit!!!

People are shocked by what they see when they come into the room. At the moment my visitors are restricted – just family and very close friends.

In the morning the nurses come in to me to change my bed and to see what help I need. I have been determined to manage my own shower every day as it seems to be the last barrier between me becoming a total invalid and the young woman I know I am.

The nurses give me a warning that they are coming in so as I can get myself ready. They always offer to help me but I say no. They detatch my central line and clean it. They can’t take out the pumps as they have to stay in my arm and my stomach. I tuck one into my knickers and the other into my bra while I walk. They are large and awkward.

I sit on the side of my bed and it takes me half an hour to will myself to stand and walk to the bathroom. My legs feel very jellyfish. It can take me quite a few minutes to get there – to the other side of my room.

The nurse hovers while I am in the bathroom and calls into me every few minutes as they make the bed.

It takes me ages to get out of my PJs – I always soak them in the sink so as the laundry will be easier for whoever has to wash them at home.

I sit for my shower and I can just wash and go as I have no hair to worry about. I have to be scrupuolous about hygience to keep bugs away. Sometimes I vomit during my shower and have to start all over again.

After that I have to have three mouth washes – one of which I have to try and swallow.

The whole process can take an hour and a half as I am so weak. I am determined to do it every day though as if to show the doctors and nurses how life filled and able I am.

Inside I feel like death.

I know by looking at myself that I have a long road ahead of me. I will take it in my stride. All I want to do is get outside and smell the air and feel the rain.

Thursday 19 July 2007

I am definitely starting to feel better but the tiredness – the exhaustion is like nothing I have even felt before in my life. I can’t sleep properly. I long for my own bed. My eyes are worse – I am black and blue and green and yellow. I don’t have dark circles under my eyes, I have these massive bruises. The bleeding has happened because of the low platelet count. I am also haemmoraging from my womb also because of the low blood counts.

My latest craving is for Appeltiser. It’s very hard to get but Caroline came through and brought me up several small bottles which are stored in my fridge. I fell asleep while talking to Caroline. When I woke up she was gone and the rest of the afternoon is a bit of a blur really.

I know that she is was visibly shocked by what she saw. [Below is a photo of me taken on 18 July when I was at peak effects from the chemo]

S/W Ver: 85.92.70R

Friday 20 July 2007

I had another relatively good night last night. I had a visit from Bryan and he brought Emma with him. Gosh it was so good to see Emma. I have never been away from her and Cathal for longer than a couple of days. She looked good, different to me, more grown up and I can only imagine how dreadful I looked to her. She had heard about my eyes and wanted a look. I was nervous about her seeing them as I didn’t want to frighten her.

She took a look and she just said: Ah man that’s cool!!!!!! They stayed a good while and they left before the worst of the Friday evening traffic.

I had another dose of the strong anti sickness and I was out of it for a good while. I kept thinking I heard Emma and Cathal in the room and I was talking to them. I had a small puke. My mouth is in a bad way – there is dead skin inside which I managed to lift off .

Saturday 21 July 2007

I am writing this in the early hours of the morning. Mam and Conor came in today. Maureen went off to Dublin to meet Eamon to go back to Cork. I am very lucky to have the Mum and the Mum in law that I have as they are keeping the show on the road for us at home. Conor has been a little treasure to me since I’ve been in here. He has come with drinks, he has come to talk and he has come just to sit with me when I have been unable to talk.

My mum in law Maureen did not recognise me. She thought that Bryan had sent her to the wrong room by mistake. That’s how bad I look now.

Bryan came up today again – he must be worn out with all the running around. We sat on the bed together and I just needed to be held. We sat for ages just holding on, not speaking. I think we are both too shocked and numb to talk.

I managed to walk to the hospital shop with Bryan – it was a major achievement. I have my sunglasses on as I don’t want to frighten small children. I got myself a can of Club Orange and I drank it all – it went down and it was like the nicest thing I have ever tasted in my whole life.

About a half an hour later it all came back up, it was just too much for my stomach to take.

Sunday 22 July 2007

I was awake very early this morning. I felt like having a glass of milk but I took two sips and wasn’t able to have anymore. I haven’t eaten a single bit of food since July 4. I can’t even imagine ever being able to eat again.

I am sore all over today – my arms, legs, back, chest and every muscle I have seems to be weighing me down. It must be because of the additional movement out of the bed that I had yesterday. I am definitely feeling better.

Sara arrived again and she walked me down to the bathroom as I was given permission to be out of my room long enough to have a bath. The bath felt amazing. The walk just a few yards though was very wearing.

I had a list of questions for Dr Larry and he went through everything with me. The going home words were mentioned for the first time today – wow. It must be in sight.

It was a good day today. I was able to chew and then spit out some fruits pieces. I have also had my first 24 hours free of any vomiting which is amazing.

Monday 23 July 2007

I had my first normal sleep last night. I also had another night without vomiting. I am hopingto be allowed down to the shop by myself today.

I am disappointed that I vomited late this evening. I thought I was done with the vomiting but I guess not. It’s hard not to feel downcast.

Monday 24 July 2007

I puked early this morning.

I have been put back on one of the anti sickness drugs as maybe I came off things too rapidly. Hopefully the anti sickness drug will help. I had an okay day without anymore vomiting. I haven’t eaten now for 20 days. They are looking after me with food through a drip and I am not wanting for any vitamins etc I am finally able to allow some liquid, some of the drinks into my tummy. Slowly, slowly.

My latest craving is Apple flavoured Capri Sun. I was trying to text Rachel what to get me when she was on the drinks aisle in Tescos but I kept drifing off. She arrived with a delivery of a few boxes of Capri sun. I could open a shop at this stage with the range of drinks that I have.

Bryan was up. I keep telling him not to come every day as it must be killing him. He is working and doing stuff at the house and the he is up and down from Newbridge to Tallaght.

I really miss Cathal. I haven’t seen him for 20 days. When Emma was here she made a little video on her phone of me saying hello to him. He keeps asking her to make Mammy talk to him on her phone.

I ate two teaspoons of natural youhurt.

Wednesday 25 July 2007

I am three weeks in hospital today. I am not feeling sick – I guess being back on the anti-sickness drug is helping me. I had a bath all by myself today. I feel I am turning a corner on the road to recovery and it is a truly wonderful feeling. I haven’t seen myself in a proper mirror for a long time so I have no idea what I look like. I have seen my eyes in my small cosmetic mirror. They are still pretty bad.

I wasn’t able for any food today. I am drinking a bit more and keeping it in so they have taken me off the drip as I am starting to retain fluid. I have told Bryan he has to have a day free of the hospital. He has finally agreed and is taking tomorrow night off. I am drifing in and out all the time during the day. I start watching an episode of something on t he TV and fall asleep. I have missed loads of episodes of Murder She Wrote so I have no idea who has done it!!!!!!!

Thursday 26 July 2007 BEST DAY SO FAR

I had a good night last night. I slept the best since I have come into hospital. I am off all drips and antibiotics since last night. My eyes are slowly beginning to clear of blood and bruising. I slept a lot today – sleep is a great healer for the body.

My consultant came into see me and she said something that made my heart almost lift to the sky ‘Brenda’, she said, ‘You are finally off my list of people to be worried about!’. I was thrilled. She went on to tell me that I have been one of the sickest people she has taken through the transplant and that I have posed a huge challenge to the team.

I drank loads today and it all stayed down thank God. I am still not able to eat and Dr Enright said I wasn’t to worry, just to take it easy.

Emma has been away at pony camp and she won a trophy. She is over the moon. I have visitors and texts all the time and it’s weird that life is going on around me but without me. It’s great to hear news from people and to know that the world is waiting for me to re-join it. It’s great too that so many friends and family are rallying around to keep the kids entertained. Most other families are planning holidays whilst we are stuck planning visits to hospital and minders etc

There is talk today about me being let out for a few hours over the weekend. Wow. I am amazed. I am just on a few intravenous drugs at the moment – all the drips and permanent attachments are gone so I am freer.

I feel that I am slowly coming back to myself – I am taking babay steps but they feel so good.

Friday 27 July 2007

Conor and my Dad arrived to see me today. My Dad doesn’t do hospitals so this is his first visit to me in hospital. I think he got a shock when he saw me. In fact, I know he got a shock when he saw me. Bald, bruised and a shadow of the person I was when he last saw me. He said I looked like Sinead O’Connor. We talked about home where I come from and he was telling me about all the people who were asking for me and wishing me well.

I asked Bryan to take a break from visiting me. I felt very tired. Visitors are so welcome but I just get so tired. I felt a bit of nausea so they gave me something which did the trick.

Saturday 28 July 2007

BREAKFAST REQUESTED BY ME FOR THE FIRST TIME

I was awake very early and I asked for breakfast for the first time since being admitted on the 4 July. I had some rice crispies and some juice. It stayed down all day. My stomach is very swollen, it looks almost distended.

Bryan came up and he thought that I looked so much better. I am improving slowly each day. I didn’t get to go home today for a few hours as I developed a temperature so they held onto me. I was disappointed at not being able to see Cathal. I haven’t seen him for weeks and I miss him. I feel jealous of the people who are getting to spend time with him!

I got sick again this evening. It’s deflating when it happens. Just when I think I am past it, it happens again. It was probably the orange juice which is way too harsh for my tummy. I should have known better.

Sunday 29 July 2007

I spoke to Cathal on the phone this morning. He sounds so grown up. I am desperate to see him. I doubt I will get out today for a few hours. I just want to hug him and to kiss him and to feel his warm little wriggly body in my arms.

It has been so tough for him. Bryan took a pic of me on his mobile and he showed it to Cathal and Cathal said ‘make her talk to me’. It’s heart wrenching really when he asks me ‘Do you not want to come home to me Mammy?’ How do you answer a question like that from a two and a half year old.

Bryan and Emma came up to see me. It was great to see her again.

I am feeling like I have a chance now to go back to my life and to be well.

[I am signing off the diary entries for now as it seems like the right time for a break. This is such a difficult read back for me. xx]

Footnote 13 April 2015: A few people contacted me about my note above. I should have been clearer about what I was saying. I will have more chapters this week. What I meant is that I am just making a chapter break above as it seems like a good point to do so. Sorry for making people think I was going off on a break!

Brenda xx

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