Tuesday 24 July 2007 and Tuesday 24 July 2012

Tuesday 24 July 2007 = THEN

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. It's hilarious really that I measure the success of my days by the number of vomiting I am doing! Not! 

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 

Breakthrough though - 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 sis to tell her 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. Will he even remember me? Emma recorded some video of me talking on her mobile phone and she took some pics when she was in. When she showed him the pics he said 'Make her Talk'. He comes on the phone to me and says: "Mammy do you not want to come home to me?" My heart is breaking. 

I ate two teaspoons of natural youhurt but they made me sick.

I am officially sick of being sick! 

Tuesday 24 July 2012 = NOW

Cathal has learned off my mobile number and he rings me now every few minutes. He is still asking me when I am coming home from work! LOL!

They are getting very self sufficient now. It's great to have had so many birthdays. Back then I was hoping to make it to his 3rd birthday......

I have a lot to be thankful for.......

I am a lucky girl........

B

Monday 23 July 2007 and Monday 23 July 2012

Monday 23 July 2007 = THEN 

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.

Maguire Ward is becoming a real second home for me. The staff are amazing here. Nurse Eimear is just incredible. 

I have a list of questions ready for my registrars when they come to see me:

At what point will you consider letting me home?

Do I have to be able to swallow tablets and eat before you will let me home?

What level do my blood counts have to be at before I can leave?

Can I do anything to expedite the process that will see me going home?

Lot of questions! 

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 23 July 2012 = NOW

Booked my annual leave off from work today - starting it on August 1. I can't wait. I can plan something and head off here, there and everywhere! Well within reason as we are having a staycation.

Raining.

I don't care. I will just enjoy being .....

B

Sunday 22 July 2007 and Sunday 22 July 2012

Sunday 22 July 2007 = THEN

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 to the shop and back.

I am definitely feeling better though. 

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. It was luxurious and delicious. The walk just a few yards though was very wearing and I needed to be helped the whole way there and back. Sara has been a saint - she is the greatest.

I had a list of questions for my doctor Larry and he went through everything with me. Wait for it - The GOING HOME words were mentioned for the first time today – wow. 

It must be in sight. Amazing feeling......

It was a good day today all in all. 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.

Sunday 22 July 2012 = NOW 

Up bright and early this morning for my radio show. Got a lot of reaction about the music - Attraversiamo from Eat, Pray, Love was one of the tracks. Attraversiamo means to cross over and I really have crossed over a huge milestone of five year's since my transplant. Five precious years.......

Reading back at the Then part is hard at times. I question myself 'was it really that bad?'. Yes it was! It was the worst. It was the most gruelling and challenging thing I have ever been through.......

B

x

Saturday 21 July 2007 and Saturday 21 July 2012

Saturday 21 July 2007 = THEN

I am writing this in the early hours of the morning. Mam and Conor came in today. My mum in law went home 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.

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.

HUGE NEWS: 

I managed to walk to the hospital shop with Bryan – it was a major achievement. I kept my sunglasses on as I didn'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. Cold and sweet and refreshing and just manna!

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

One step forward and two steps back.......so frustrating..........when will I be able to eat and drink normally again? I still haven't managed any food. The last bite to eat was on July 4th. 

Saturday 21 July 2012 = NOW

Busy day doing all the things I like. Good food cooked at home on the BBQ. Yes we had a BBQ. We seized the two to three hours of warmth and clear skies and stoked up the BBQ. There was a nice glass of fizz too....... 

B

xx

Friday 20 July 2007 and Friday 20 July 2012

Friday 20 July 2007 = THEN 

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. She looked good, different to me 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 loopy drug 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 - not good.....not good at all......when will the drama end? 

Friday 20 July 2012 = NOW 

Ah yes the effects of the high dose chemo were pretty dreadful at times. As well as what was actually happening there was the concerns about pneumonia, blood poisoning and basically and A - Z of other serious side-effects that could happen........

I think at the time I was relatively calm as I did not have the energy to be fretting and crying.....I can't really remember being in pain or crying. There were some painful things, like my mouth and gut which bled and burned all the time......... The acid burn and heartburn were horrendous and I could not take anything for it as it came straight back up.

I don't remember being in pain, but I was aware at the time of a dullness and an ache, which must be what suffering feels like......

B

xxx

Thursday 19 July 2007 and Thursday 19 July 2012

Thursday 19 July 2007 = THEN

       

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 the drink appeltiser. It’s very hard to get but C came through and brought me up several small bottles which are stored in my fridge. I fell asleep while talking to her. When I woke up she was gone and the rest of the afternoon is a bit of a blur really. It's that drug they have me on - I keep losing time and I wrote some very odd stuff earlier in my notebook - something about Harry Potter......... Nurse!!!!!!

Thursday 19 July 2012 = NOW 

Some of the entries I have read back on are so bizzarre, that they do not sound like me at all. I guess it was the drugs and medication they had me on - that is my excuse and I am sticking to it. 

There were times back then, when things were so absurd, that if I didn't laugh, I would have spent my time crying. So I laughed....... Some days what went on in the room was like an episode of Little Britain........ you do not need any more details !!!!

Thank God I am here at this stage now.

Thank God I am well..........

No smart comments please LOL

B xxx

Wednesday 18 July 2007 and Wednesday 18 July 2012

Wednesday 18 July 2007 = THEN 

I got 2 units of blood and 2 pools of platelets as counts still not good. 

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

On the symptoms and physical reaction chart there is a new feature. 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 since the start of the month, so it feels less like a prison. 

I have a slight temperature so a blood culture was taken to see what’s going on. It could be the line in my chest, but I can't lose that yet as it is doing so much work for me and there is so much medication and drugs going in through it. 

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.

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

Did I mention that it has rained every day since I have been in here? Another great Irish Summer.

Wednesday 18 July 2012 = NOW

It's funny reading about the rain. It has rained pretty much every day this month in 2012. Another great Irish Summer indeed. It even rained when I was in Germany.

I had a day off today and we went looking at cars. I have spotted my next dream car - a VW cabriolet - fabulous and slightly edges the Beetle out of the way. 

B xx

Tuesday 17 July 2007 and Tuesday 17 July 2012

Tuesday 17 July 2007 = THEN

Vomited at 8am

Vomited at 9.30am

Vomited at 12 noon

Vomited at 4.00pm

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 then 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, lucozade, capri-sun, giner ale etc

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 very strong medicine and I have been floating around the room, hearing and seeing things and saying a lot of very silly things.......


It's scary what the chemo and medication are doing to me ......


Tuesday 17 July 2012 = NOW


So I was contacted by a lady in Caragh Parish and we have a plan for next year. We are putting together a choir called The Big C -hoir. The choir will be made up of amateur singers who have one thing in common - they have all survived with and/or are living with cancer. We are doing a special concert next year at the end of April in Caragh Church to raise money for cancer research.


There is currently no cure for my type of cancer - Myeloma. It would be amazing to get a cure for this and so many other cancers, so cancer research is where the money is going. 


We had our first meeting this week and it is very exciting to be picking the songs and putting the call out for singers. 


Hopefully we will have more news soon. 


B

Monday 16 July 2007 and Monday 16 July 2012

Monday 16 July 2007 = THEN 

2 units of blood and 2 more lots of platelets

I am disappointed that I am still so sick and nausaeus 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. I got very stressed this morning from no sleep and loss of blood and I could not breathe so I had to be put on oxygen through my nose. The little nose pieces keep filling up with blood - it is pretty awful. 

At lunchtime I was taken to see an ear, nose and throat person in the clininc. I am still neutropenic so I am still in isolation. I was rushed through the waiting area and into the clinic. I was protected behind a mask which filled with nose blood and there were quite a few people staring as I passed. I look hideous. 

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 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. My nose has been bleeding now since Friday. I have officially become a scene from a cancer movie! 

Monday 16 July 2012 = NOW

Busy day today back at work after my Germany trip. Lots to catch up on. 

I didn't think I would ever be back at work when I was going through my transplant back in 2007. I didn't think I would ever be able to do much again.

Thanks be to God though that so many people had faith in me, when I was too weak to have any faith in myself. I would need a whole blog roll to thank all the people who willed me to be well again.

You know who you all are.

THANK YOU

B xx

Sunday 15 July 2007 = THEN 

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 got 2 units of blood and 2 lots of platelets.

Sunday 15 July 2012 = NOW

I did my show on KFM Radio this morning at 8am. I have always wanted to do a radio show and the funny thing is, surviving cancer has given me so much drive and courage to grasp the things I have always wanted to do. Do give a listen to me some Sunday on www.kfmradio.com - it's a religion, reflection and social issues show, but I am not preachy. I am chatty and ordinary and I think you will like the music. 

I have packed a lot into the last five years and I have enjoyed almost every minute [there have been a few setbacks], but it's all been pretty good.

B

x

Saturday 14 July 2007 and Saturday 14 July 2012

Saturday 14 July 2007 = THEN 

This next piece is maybe not for the squeamish

Vomiting and diarrhoea at 7.20am

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 make progress and it got stuck and came back up with blood! Very frightening. I am really raw now in the gut – the transplant information book said that would happen. 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.....




Saturday 14 July 2012 = NOW


It's upsetting for me to read this. Cathal, my son was almost three and Emma was nine. It was just so unfair for them to have to be without me for so long..........It was all so horribly brutal and really there was very little of my dignity left at that stage of the treatment....I was hanging on my my fingernails.


This day five year's later in July 2012 I am in Germany, but homeward bound. I got home in the later afternoon and Cathal, who is now 7, almost knocked me off my feet, he jumped into my arms with such force. Emma, a more reserved teenager now, was very happy too.


We had a lovely evening and I was so glad to sink into my own bed and room, despite the fact that I do not have remote control black out blinds for the window. I wonder is there a company in Ireland which does them........


B