I realise I haven’t explained my treatment plan on this, thats mainly because I don’t know because it can change from day to day depending on whether I get infections etc. But I think I have some gist of it now so I’ll give it a whirl.
I have traits of the 2 types of Acute Leukaemia- ALL and AML. They had to start my chemo straight away because obviously Leukaemia is cancer in the blood. The type of chemo they give is one of the most extreme for the body to handle but the aim is to give it fast and a lot of it so that they push it in to remission as quickly as possible. So that is what has been happening for the last month and a bit.
My Chemo lasts 5 days and for round 1 it was 3 types of chemo a day so by day 5 I will have had 15 bags of chemo. Their aim is to push it into remission after the 1st cycle. It means I was hooked up to the tubes for most of the time that week but they free you so that you can have a shower and I always try to get dressed too.
My 2nd round of chemo which I just started on Wednesday is similar. They have dropped one of the chemos so I am only having 2 bags every day for 5 days. This is because the initial results of the bone marrow show that I am in remission!!
Because I have a combination of the 2 types of leukaemia it means that my whole bone marrow doesn’t work (the stuff that makes the blood!) This means my leukaemia would come back and I would need regular treatment for the rest of my life if I don’t have a bone marrow transplant. They told me early on that I would need one of these and they began to test my sister Clare to see if she is a match. There was a 1 in 4 chance that she was so we were told not to get out hopes up. If it turned out she wasn’t they said I would go on a transplant list. But beyond all belief we were told the other day that Clare is a match.
This means that she will have a small operation to remove some bone marrow and it will be given to me the same day. Its all very complicated and it is a long road ahead but we are delighted that we got some good news, in fact all of us had a bit of a cry because even a bit of good news like, I don’t have to wear a mask in the ward at the moment is great, so you can imagine when we heard that!
I will have to have more chemo and radiation before any of this happens and all I can really do is take one day at a time, otherwise things get so overwhelming. That’s another thing I loved about being home, taking one day at a time. Usually the days just role into each other when your out there working but when I was out I had to make use of every single day because I knew I was only out for such a short time. I hope that’s something I’m learning- not to waste time doing nothing for the sake of it.
Obviously we are all anxious about the procedure Clare has to have because we haven’t really heard much about it yet but as time goes on we will know all the in’s and out’s and all the staff here are so delighted she’s a match. They said often someone will have 6 or 7 siblings and not one is a match so it really is brilliant news. She will needed to be tested for a clean bill of health obviously before any final decisions are made but obviously if she can give me the transplant I will never be able to repay her, so I will just have to do the most incredible speech at the wedding, be the best chief bridesmaid I can be and generally be her slave forever, and that is more than ok with me, right Zumo?
So there may be a chance that all three of us will be in hospital at the one time because my mom is waiting on her date to start radiotherapy she wont have to stay but still you can get very tired from that treatment- it’ll be all down to the aunt’s and Adam and Stephen to visit us three! Can you believe it?
I also have to add that I forgot to mention my family did a big meaty BBQ for me one of the days I was home last week and Adam made his favourite chicken wings, they were his best ones so far, elephant and castle style, yum yum! And Stephen bought me a mountain of Capri Sonne which was well appreciated instead of sterilised water/orange mi wadi!
So hopefully that can give you guys some insight into my treatment plan. It is quite complicated and the plan changes from day to day but it’s all to help me kick this things ass.
Lots of love,
M
Saturday, July 24, 2010
Wednesday, July 21, 2010
Turns out the string was shorter than we thought
After all that in my last blog it turned out my immune system recovered pretty much overnight! They came in to me on the Friday and said my white blood cells etc had recovered after the chemo and I would be out for up to a week by Sunday. It is crazy how the body repairs itself. They let me out then for a few hours on Saturday and I went home for dinner. To say it was incredible to leave the hospital is an understatement.
They then discharged me on the Sunday under strict instructions to come back on Tuesday and Thursday for blood tests and a bone Marrow test, which is the test they do to see how much cancer I have in my blood. I was also told what I could and couldn’t do such as drink water that isn’t sterilised, salads and fruit as the water can all contaminate them. I also can’t have some cheeses and mayonnaise and take away obviously as God only knows what’s in that!
Being home was the weirdest feeling. I had left my house 5 weeks before that with an overnight bag, not really sure what was going on and assuming I would be in there 2 nights max. It felt like I had been away for such a long time but then as the days passed I could feel the sense of normality come back, and that was the nicest part of it! Just having a cup of tea with mom and Clare in the kitchen was brilliant. I also got to see some friends and managed to see little Percy too which made me smile. Megan came up and looked at me funny because I was wearing a hat but Maggie explained that my medicine made my hair fall out and she seemed happy enough with that- She was intrigued by the wig! We went on to make rice crispie cakes even though I’m pretty sure she only wanted to lick the bowl.
The 1st night in my bed was great, it was so quiet. No sound of the air conditioning, which I never realised, is really loud in my ward. I wasn’t woken up at 6 for a blood test, weight check, blood and heart check and temperature check. Eating a fry was pretty great too as was all the home cooked meals- thanks mom/Dee/Maggie/Clare
The great thing about being home was hearing the noise of the world outside. That will probably never make sense to you guys and I hope it never does but I hadn’t heard an outdoor noise in nearly 5 weeks so to hear planes in the sky and cars and birds and to smell grass and flowers and to just feel air on my face was really re energising. Sometimes in hospital you can’t even remember what that feels like and for the last week I really was trying to remember what it’s like to feel all those normal, everyday things.
I felt really well at home too which was great. I realised how sick I was in those last few weeks before I was admitted. I literally don’t know how I was working and seeing friends and visiting my mom in hospital. I must have been on autopilot because this time when I was home I felt so much better. Stephen will tell anyone how tired I had been in the weeks before my diagnoses. I would literally go to bed at 9 o clock and not think anything odd about it. The pain in my head was so awful at that stage that being awake was tiring. But last week I was in Stephens I was still wide awake at 11.30, I don’t think he could believe it himself!
The best thing about being at home was seeing all my family in a natural surrounding not beside my bed. I hope they all got a break too because coming up here every day must be exhausting. I’m back in the ward now for my next course of treatment. I’ll keep you all updated on what that involves as it all rests on the results of the bone marrow they did last week.
Thanks for all your love and support by the way. It is actually incredible how supportive and loving everyone is. Each and every text, call, letter, magazine, present and card makes each day in here easier so thank you all so much.
Lots of love,
Mairéad
They then discharged me on the Sunday under strict instructions to come back on Tuesday and Thursday for blood tests and a bone Marrow test, which is the test they do to see how much cancer I have in my blood. I was also told what I could and couldn’t do such as drink water that isn’t sterilised, salads and fruit as the water can all contaminate them. I also can’t have some cheeses and mayonnaise and take away obviously as God only knows what’s in that!
Being home was the weirdest feeling. I had left my house 5 weeks before that with an overnight bag, not really sure what was going on and assuming I would be in there 2 nights max. It felt like I had been away for such a long time but then as the days passed I could feel the sense of normality come back, and that was the nicest part of it! Just having a cup of tea with mom and Clare in the kitchen was brilliant. I also got to see some friends and managed to see little Percy too which made me smile. Megan came up and looked at me funny because I was wearing a hat but Maggie explained that my medicine made my hair fall out and she seemed happy enough with that- She was intrigued by the wig! We went on to make rice crispie cakes even though I’m pretty sure she only wanted to lick the bowl.
The 1st night in my bed was great, it was so quiet. No sound of the air conditioning, which I never realised, is really loud in my ward. I wasn’t woken up at 6 for a blood test, weight check, blood and heart check and temperature check. Eating a fry was pretty great too as was all the home cooked meals- thanks mom/Dee/Maggie/Clare
The great thing about being home was hearing the noise of the world outside. That will probably never make sense to you guys and I hope it never does but I hadn’t heard an outdoor noise in nearly 5 weeks so to hear planes in the sky and cars and birds and to smell grass and flowers and to just feel air on my face was really re energising. Sometimes in hospital you can’t even remember what that feels like and for the last week I really was trying to remember what it’s like to feel all those normal, everyday things.
I felt really well at home too which was great. I realised how sick I was in those last few weeks before I was admitted. I literally don’t know how I was working and seeing friends and visiting my mom in hospital. I must have been on autopilot because this time when I was home I felt so much better. Stephen will tell anyone how tired I had been in the weeks before my diagnoses. I would literally go to bed at 9 o clock and not think anything odd about it. The pain in my head was so awful at that stage that being awake was tiring. But last week I was in Stephens I was still wide awake at 11.30, I don’t think he could believe it himself!
The best thing about being at home was seeing all my family in a natural surrounding not beside my bed. I hope they all got a break too because coming up here every day must be exhausting. I’m back in the ward now for my next course of treatment. I’ll keep you all updated on what that involves as it all rests on the results of the bone marrow they did last week.
Thanks for all your love and support by the way. It is actually incredible how supportive and loving everyone is. Each and every text, call, letter, magazine, present and card makes each day in here easier so thank you all so much.
Lots of love,
Mairéad
Thursday, July 8, 2010
Boredom City
I'm on week number 4 in this room now with no real sign of being let out soon. Every day the doctors say the same thing, they are waiting for my immune system to start to recover before they can let me out for a few days. As to how long that takes they say "how long is a piece of string" Nice!
Had a bit of an eventful night last night in that I took a reaction to a new antibiotic they were giving me. Literally within 5 minutes I had swelled up and I needed an oxygen mask. Once I calmed down I got the shakes, I've had that a few times here where my whole body just starts to shake so the nurses gave me a type of opiate and after that I was as high as a kite!
Other than that I dont have much going on here. Home seems to be mad- they are painting and cleaning my room for when I'm home. Clare seems to be project manager for the whole family! I cant wait to see the finished product!
I was talking to my nurse about Clare because I was saying how hard we were all finding things with my mom's cancer in that we were constantly worried about her getting an infection etc. and now for me to have this- I think if it was the other way around and Clare was sick I would be having a nervous breakdown, I really do. I really struggled since Christmas with everything I can't imagine how they are all coping at home, particularly Clare. AND she has a wedding to organise too. Oh lordy!
I get some bits of post in here- mainly from Lisa who sends me in DVD's- thanks Liser! I am still getting Abbey News Weekly too which I still love!
Anyway Home and Away is on- I better dash- it's the highlight of my day :)
Lots of love
Mairéad
Had a bit of an eventful night last night in that I took a reaction to a new antibiotic they were giving me. Literally within 5 minutes I had swelled up and I needed an oxygen mask. Once I calmed down I got the shakes, I've had that a few times here where my whole body just starts to shake so the nurses gave me a type of opiate and after that I was as high as a kite!
Other than that I dont have much going on here. Home seems to be mad- they are painting and cleaning my room for when I'm home. Clare seems to be project manager for the whole family! I cant wait to see the finished product!
I was talking to my nurse about Clare because I was saying how hard we were all finding things with my mom's cancer in that we were constantly worried about her getting an infection etc. and now for me to have this- I think if it was the other way around and Clare was sick I would be having a nervous breakdown, I really do. I really struggled since Christmas with everything I can't imagine how they are all coping at home, particularly Clare. AND she has a wedding to organise too. Oh lordy!
I get some bits of post in here- mainly from Lisa who sends me in DVD's- thanks Liser! I am still getting Abbey News Weekly too which I still love!
Anyway Home and Away is on- I better dash- it's the highlight of my day :)
Lots of love
Mairéad
Saturday, July 3, 2010
Date Night
So the hair is gone and it's great to have it off. The horror of seeing it come off in huge clumps was too much so now I have a nice neat hedgehog looking hair style. The rest will fall out soon enough I imagine! One thing I'm not looking forward to is my eyebrows and eye lashes falling out. Hair you can fake but the other two really show that someone has cancer I think.
You'll be all glad to know I haven't watched Wife Swap since my last post but I am dipping in to Big Brother- I know, I know!
Tonight is date night with Stephen, for the last 3 Saturdays we have been watching DVD's in the hospital room. He even pulls the curtains and turns off the lights and we eat goodies (welll I eat what the hospital give me!) Beats Coppers anyway!
Lots of love
Mairéad
xx
You'll be all glad to know I haven't watched Wife Swap since my last post but I am dipping in to Big Brother- I know, I know!
Tonight is date night with Stephen, for the last 3 Saturdays we have been watching DVD's in the hospital room. He even pulls the curtains and turns off the lights and we eat goodies (welll I eat what the hospital give me!) Beats Coppers anyway!
Lots of love
Mairéad
xx
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