Life isn’t measured by the number of breaths we take but by the moments that take our breath away.
I am continuing my diary entries from when I was in hospital for my stem cell transplant in July/August 2007. I am beginning to feel a bit better and the side effects are starting to subside. Anyway I will let you read on:
Monday 30 July 2007
I had probably the best night’s sleep last night that I have had since I came in to hospital on July 4th. I didn’t feel sick at all. I had breakfast but then I felt a bit sick so they gave me some anti-sickness meds. We are trying to get the balance right between weaning me off the anti-sickness meds and making sure I don’t feel sick or have to vomit.
I managed to take some of my tablets orally today for the first time in weeks. That and keeping my breakfast down are all steps closer to freedom for me.
I saw my consultant and she said that the thing worrying her at the moment are the spikes in temperature that I keep getting. It may be the line in my chest so she made a decision to take it out today. I am very nervous about it coming out as it had to be surgically inserted. How can they take it out here in the hospital room?
I will be glad to be free of it though.
The GOING HOME words were mentioned today for the first time. Halleluia! I am nearly there.
The doctors need to be sure that all the toxicity in my gut has settled so there is a little bit of a way to go yet. Boy has my gut been toxic!
I have vomited so much and had so many visits to the toilet! Eugh. I have been on four different mouth washes to prevent me picking up a bacterial infection, a fungal infection, thrush [which I have anyway] and something to protect my teeth. It has been fairly rancid!
Cathal was on the phone to me first thing this morning, telling me he is better and that he is coming to collect me very soon. I was crying as I listened to him. He went on to tell me how much he is missing me. Gosh I can’t wait to hold him in my arms, to hug him and to just see him. It has been very hard to be away from him for almost a month.
I have been lucky to see Emma a couple of times but I can’t wait to spend time with her too. She is at the dentist today. It’s hard not being there for her. She has overcrowding so will have to have some teeth out later in the week. Yikes! Another thing I won’t be able to be there for and that is very hard.
I saw the Counsellor this afternoon and we had a good chat. I was a little bit angry because I felt that I had not been prepared for the utter awfulness of the last few weeks. I would have liked to have spoken to someone who had already been through it, but I guess that wasn’t possible. There isn’t even a Myeloma website or organisation for Ireland. I will change that as soon as I am better.
My wonderful hubby Bryan came in – he has been a knight, amazing and supportive. The last few weeks have been a real test of the “in sickness and in health” part of our marriage vows. He passed with flying colours.
Home is on the horizon.
Tuesday 31 July 2007
I woke up coughing and spluttering. Because my stomach is so used to vomiting, it just all kicked off and I felt awful. One step forward, two steps back. The nurses gave me something to settle it. It is just all this horrid mucus which has been lying on my chest from being copped up and immobile for a month.
Dr Sean was in early and he was reviewing my results. I get blood taken every morning – every morning since I have been in here, the wonderful phlebotomist has been in and I am very fond of her. She is such a lady. Anyway Dr Sean was looking at the results and looking at me and we were chatting and I was hoping he would say the H word. Dr Sean and Dr Larry are my two registrars and even though I only met them for the first time on 4th July, we have a great rapport which is so important.
Dr Sean said I have a very practical attitude to all the setbacks and awfulness I am having. I guess I am of the view that there is no point in being hysterical.
The great news is that they are giving serious thought to letting me home for good at the weekend. But they may want me to try going home for a few hours first maybe tomorrow or the day after to see how I manage.
Nurse Eimear was back on days today – she has been gone for a week and she could not get over the improvement in me. She said it is just wonderful to see it. She has been my angel. Nurse Eimear O’Flaherty if you are ever reading this, THANK YOU.
I went outside the hospital today into the fresh air for the first time since 4th July. It was raining but the rain and the air just felt wonderful. I feel dry and parched from being cooped up and it’s just fabulous to be out again. I managed the whole trip from the ward to the front of the hospital without any help. Result!
On the way back to my hospital room I caught sight of my reflection in one of the windows and I got a shock. I seem to have shrunk. I look like a stick insect – like the character from A Bug’s Life. I guess not eating for a month will do that.
[Later on in the day]
Big News this afternoon. My central line into my chest was pulled out today at 12.40pm by Dr Larry. Woo hoo. It’s gone. The line was put in on 21 May to allow my stem cells to be harvested and then to give access for the transplant and all the supportive treatment. It took a huge yank/pull to get it to come out and I have a little hole where the plastic tube was. This will close over in time. It will heal naturally. It was a bit gross though and I was very nervous during the procedure.
I am hopefully getting home for a few hours tomorrow. My brother is collecting me as Bryan is taking Emma to have some teeth out in the dental hospital. I am too weak to go and the team here said no, that it is not a good idea for me to be in a dental hospital.
One of my friends called in this evening and she said that another friend of ours who called in a couple of weeks ago was visibly traumatised by the way I looked then. It must have been horrific for people to have to watch me. Perhaps I should have warned people.
Fingers crossed. Downhill from here!
Wednesday 1 August 2007
I am a calendar month in hospital today. But hurray, I am being allowed home for a few hours to see how I manage. I am nervous but really looking forward to being in my own home again.
I can’t wait to see Cathal and I am hoping I get to see Emma. She is having teeth out today and I reckon it will be tough on her.
[written after I was back in the hospital later that night]
My brother collected me and we got home. It was so lovely to be around familiar things. I gave Watchie [my cat] a huge hug but she felt too heavy so I had to put her down. I have no strength at all. I am an eight stone weakling. I looked in the mirror in my bedroom and it was the first proper look since 4 July. I am officially a stick insect. I am so thin and so bald. I have no clothes to fit me. I have gone from being a size 20 to God knows what size.
Cathal came home with his minder and at first he was hesitant as though it could not possibly be me standing in the hallway. We didn’t tell him I was coming home, just in case something went wrong. A two year old would not understand.
He hesitated and then he threw himself into my arms and I think everyone watching cried a few tears – well I certainly did. It was just the best feeling ever to be able to hug him and drink in his scent. A stand out moment for me. It made all the awfulness of the treatment worth it.
I had to have a lie down as I felt weak and Watchie came up and curled up on my feet. I guess she missed me too.
Emma came home with Bryan and she was in bits. They took out four teeth. She had a terrible time waking up. I sat with her in my arms on the couch and tried to take away her discomfort. She was weak and groggy and I felt so bad about not being there for her. We sent her off to bed to sleep it off.
The few hours at home passed too quickly for me and Emma was still sleeping when it was time for me to leave to go back to the hospital. Cathal cried. He was so upset to see me going again. How can a two year old process all that is happening? For all he knew I was going and might never be back. We reassured him that I was just going back to tidy up my room and to get all my things and that I would be home as soon as I could.
His face was pressed up to the window and his little hand waving to me as we left. Another little piece of my heart broke seeing him like that.
I was so tired when I go back to the hospital. I changed into PJs and the nurses came in and sorted my meds. I reckon I was asleep before my head hit the pillow.
A great day.
Thursday 2 August 2007 [HOMEWARD BOUND]
I had a great night’s sleep last night. When I woke up I had an upset tummy. It was minor in comparison to what I have had all month.
So the big news today is that I am finally going home.
I am going home.
I have done it.
Thanks to the miracles of medicine and the talent and care of my team here, as well as the love and support of my family – I have done it.
I am emotional. I am scared. I won’t have my call button beside my bed, so I am anxious. I am sure I will be fine in a day or two and I have an on call emergency number if I need anything, but I am scared and elated all at the same time.
God is good. Thank God for my faith and for all the prayers and Masses which were said for me and which willed me back to health.
I am going home.
I am going home.
Cathal will be delighted. Apparently when Bryan got back home last night, Cathal met him at the front door and said: “Where did you take my Mammy to?” Bless him.
All morning at home he has been saying to my sister Dots: “You are going to collect my Mammy to bring her home to me, aren’t you?”
I am off to pack up this hospital room and this chapter of my treatment.
I AM GOING HOME……. humming this tune
This next piece was written at home:
I got all my prescriptions and my instructions from the team. I got a great send off. The nurses, doctors and support staff sent me off with hugs, cheers and applause. There were tears on my part but I felt like a million dollars walking down that corridor with my sister Dots– it was wonderful.
It must have been great for the team to see someone like me who was so seriously ill, walking out of the ward by myself.
On the way home we collected Cathal from his minder and he was over the moon to see me and to glimpse some of his routine coming back.
All evening he kept coming up to me and saying ‘You came home to me Mammy”. God bless him.
Let’s hope I get to stay home now for a good while.
HOME is where the heart is. Home is where all the people I love most in the world are. I am so happy.
Night Night from my own bed…..