Hi All,
Having a really weird week this week. Not sure if it’s all the steroids I’m on or what but I have been nonstop teary for a lot of reasons. Went up to the hospital on Tuesday with Stephen and everything is going really well for me, my bloods are fine and my doctor is happy with how things are going. But as we were waiting to see her we heard someone getting bad news and it was horrible. The girl was just screaming crying and was ushered into a quiet room, a room I was taken to the day of my diagnosis. We just sat there in silence listening to this poor person crying her eyes out. It just brings you right back to when I found out and it’s just so unbelievable it’s hard to think about because I literally have no idea how I coped initially. I don’t even remember crying I just remember saying ok.
Stephen decided to bring me for lunch after the hospital because I’m doing really well and we have to celebrate that so we went for chicken wings. It was my first time in a restaurant and it was very exciting, I was wrecked after!
I woke up another day and as silly as this sounds I felt like crap. I couldn’t even recognise myself in the mirror. I think I look well some days and I do, for someone who has leukaemia, and that’s a bitter pill to swallow some days. I look well for someone with pretty much no hair, a tube in my chest and a fat face from all the medication. I ended up just going downstairs to my mom in floods of tears, who thought something serious was wrong and got a fright herself, and I just sobbed “I look like a boy”. I have a small amount of hair but it’s not the same as before and I look grand, but again it’s not the same as before I got sick. It’s just very hard not recognising yourself in the mirror, literally staring at yourself and not really seeing anything recognisable of the person you used to look like.
I don’t really know what I’m trying to say or get across. I’m not writing this looking for sympathy at all, I really don’t want that. I just wanted to write this down and explain what some days are genuinely like. I am really positive most days and I am so grateful for how things are going but some days are just tough.
Love,
Mairéad
xx
Saturday, November 27, 2010
Monday, November 22, 2010
Growing Up A Storm
Hi all,
It’s been another few weeks at home so I thought it was a good time to give an update. I’m doing really well particularly this week I think; I feel a lot less tired and have been able to visit Stephens parents which was brilliant. I had set myself places to get back to after the transplant like the church in Knocklyon and Stephens parents kitchen for a nice cup of tea so I was delighted to walk in the front door and to have a cuppa waiting for me! I also managed to get out of tracksuit bottoms and wear something a bit more me as well as make up. I know this is probably really boring but normality is under rated.
My consultant is very happy with my progress and my blood has been healthy and at the correct levels so she has reduced my visits to once a week for the moment. This really helps with my tiredness levels because it can be very tiresome going up to the hospital all the time. As well as that there are so many people there and I am meant to avoid crowds. Sometimes I don’t like going to the day ward because you just never know what’s going to happen. My temperature is meant to be between 36.6 and 37.4 and if it is up at all even at 37.5 they like to automatically admit you because it’s a sign of infection- so each time I go I am just praying I don’t have a temperature. It’s always really busy with people at different stages which can be both really interesting and really scary because you’re always wondering why so and so has that or doesn’t or why I’m in once a week and so and so is in twice, you can get very paranoid. But at least I’m only going once a week now and I can try and be “normal” for the other days although I think I am slowly realising normal may be a bit harder to obtain than I first imagined.
My hair has slowly started to grow a bit which is very very exciting. It will be interesting to see how it grows back because they say it can grow back any way; I’m just hoping it’s not curly! My eyelashes have also really grown back too in the last week which is mad- one day they were stumps of things and the next I really noticed how long they are- that’s really made a difference because it means I can wear mascara properly and girls know what a difference mascara makes. This hair thing has really given me a boost because it’s a sign of normality and (oddly enough!) growth and a sign that I’m further away from the transplant and hopefully into good health.
Mom and I have decided that for Christmas we are going to just drink champagne and have a merry old time after the year our family has had. I still don’t know how we are coping with it all or how we have gotten through the last few months. I know a lot of it has to do with all the support you guys has given us; it has been unbelievable, thank you all so much.
Will continue to keep you updated.
Lots and lots of love,
Mairéad
xx
It’s been another few weeks at home so I thought it was a good time to give an update. I’m doing really well particularly this week I think; I feel a lot less tired and have been able to visit Stephens parents which was brilliant. I had set myself places to get back to after the transplant like the church in Knocklyon and Stephens parents kitchen for a nice cup of tea so I was delighted to walk in the front door and to have a cuppa waiting for me! I also managed to get out of tracksuit bottoms and wear something a bit more me as well as make up. I know this is probably really boring but normality is under rated.
My consultant is very happy with my progress and my blood has been healthy and at the correct levels so she has reduced my visits to once a week for the moment. This really helps with my tiredness levels because it can be very tiresome going up to the hospital all the time. As well as that there are so many people there and I am meant to avoid crowds. Sometimes I don’t like going to the day ward because you just never know what’s going to happen. My temperature is meant to be between 36.6 and 37.4 and if it is up at all even at 37.5 they like to automatically admit you because it’s a sign of infection- so each time I go I am just praying I don’t have a temperature. It’s always really busy with people at different stages which can be both really interesting and really scary because you’re always wondering why so and so has that or doesn’t or why I’m in once a week and so and so is in twice, you can get very paranoid. But at least I’m only going once a week now and I can try and be “normal” for the other days although I think I am slowly realising normal may be a bit harder to obtain than I first imagined.
My hair has slowly started to grow a bit which is very very exciting. It will be interesting to see how it grows back because they say it can grow back any way; I’m just hoping it’s not curly! My eyelashes have also really grown back too in the last week which is mad- one day they were stumps of things and the next I really noticed how long they are- that’s really made a difference because it means I can wear mascara properly and girls know what a difference mascara makes. This hair thing has really given me a boost because it’s a sign of normality and (oddly enough!) growth and a sign that I’m further away from the transplant and hopefully into good health.
Mom and I have decided that for Christmas we are going to just drink champagne and have a merry old time after the year our family has had. I still don’t know how we are coping with it all or how we have gotten through the last few months. I know a lot of it has to do with all the support you guys has given us; it has been unbelievable, thank you all so much.
Will continue to keep you updated.
Lots and lots of love,
Mairéad
xx
Wednesday, November 10, 2010
A Few More Weeks Down the Line
Hi All,
I’m home a few weeks now so decided I would give a quick update. I’m still attending the hospital each second day really but have started to get weekends off which makes such a difference and they are now hoping in the next few weeks to have me in less and less.
I can’t get over how tired I feel all the time. I tend to be ok in the morning but for the last week I’ve slept from the late afternoon to night-time every day. The doctors said it’s to be expected especially after the full body radiation (TBI). I had that in St Lukes the morning of the transplant and it went everywhere on my body including my brain. I’m also coming off a huge amount of steroids so that can make you very tired. I just can’t believe how doing such little activity results in me having to sleep for ages after. And it’s not a normal sleepy tiredness it’s like my body physically can’t move because it has no energy whatsoever.
Being home is still a bit weird sometimes. This is the longest I’ve been at home now since I was diagnosed, I only got a few days between cycles. I’ve been petrified I’m going to have to go back in but I need to cop on a bit and just take each day as it comes because I was just upsetting myself thinking of everything. I don’t even know when things will begin to sink in. I think the whole family are in shock still. I sat down with my mom and we spoke about the day they told us and I’ve no Idea how I coped. All I remember is my Aunty Dee saying I could do it because I had to and there was no other choice and that’s something that stayed with me and make me stay strong for as long as I could. I should also mention Dee was in with me every second day throughout this whole thing and she was official room decorator including outside my window which she decorated with windmills!
I’m hoping my strength will continue to grow as the weeks go on and I’ll be able to do more but I can’t be around crowds so that leaves a lot out especially coming up to Christmas but even just visiting people or having people come to visit so long as they haven’t been ill would be great.
Well that’s about it other than I think about my hair a lot, I miss it so much and can’t wait for it to grow. It’s so difficult trying to look somewhat normal and I just don’t feel like myself.
Thanks again for all your support,
Love
Mairéad
I’m home a few weeks now so decided I would give a quick update. I’m still attending the hospital each second day really but have started to get weekends off which makes such a difference and they are now hoping in the next few weeks to have me in less and less.
I can’t get over how tired I feel all the time. I tend to be ok in the morning but for the last week I’ve slept from the late afternoon to night-time every day. The doctors said it’s to be expected especially after the full body radiation (TBI). I had that in St Lukes the morning of the transplant and it went everywhere on my body including my brain. I’m also coming off a huge amount of steroids so that can make you very tired. I just can’t believe how doing such little activity results in me having to sleep for ages after. And it’s not a normal sleepy tiredness it’s like my body physically can’t move because it has no energy whatsoever.
Being home is still a bit weird sometimes. This is the longest I’ve been at home now since I was diagnosed, I only got a few days between cycles. I’ve been petrified I’m going to have to go back in but I need to cop on a bit and just take each day as it comes because I was just upsetting myself thinking of everything. I don’t even know when things will begin to sink in. I think the whole family are in shock still. I sat down with my mom and we spoke about the day they told us and I’ve no Idea how I coped. All I remember is my Aunty Dee saying I could do it because I had to and there was no other choice and that’s something that stayed with me and make me stay strong for as long as I could. I should also mention Dee was in with me every second day throughout this whole thing and she was official room decorator including outside my window which she decorated with windmills!
I’m hoping my strength will continue to grow as the weeks go on and I’ll be able to do more but I can’t be around crowds so that leaves a lot out especially coming up to Christmas but even just visiting people or having people come to visit so long as they haven’t been ill would be great.
Well that’s about it other than I think about my hair a lot, I miss it so much and can’t wait for it to grow. It’s so difficult trying to look somewhat normal and I just don’t feel like myself.
Thanks again for all your support,
Love
Mairéad
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