One Lucky Lady

Last post for 2010, does that mean I have to change the name of this blog? I did not think this title through!

This is just a short blog to let everyone know my progress over the last few weeks. I got the Hickman tube out of my chest a few weeks ago. It was a small tube tunnelled into one of the major veins near my heart so that they didn’t have to keep finding veins. It was used to take bloods every day, give me medication and fluids and to give me the glorious (!) marrow but as time goes by they don’t check my bloods as regularly (now once a week) and so it was time for it to go. I feel like something is missing, like I’ve forgotten my phone or gloves or something!

I also celebrated my 100 day post transplant day about a week ago. We had some non alcoholic bubbly and a good old celebration for both the 100 days and for the year mark of my mom’s diagnoses. As I said, what a year! My mom is still having treatment which most people forget but hopefully finishing soon enough.

I can’t really put in words what an odd year this has been, from starting off with my mom getting breast cancer and our worlds turning upside down and daily outings consisting of hospital visits as opposed to normal things, to getting a great job I love, and then becoming ill myself it has been a strange one. Some days I wake up and I don’t feel like getting up because of all the shit that I still have to face some of which is so overwhelming I can’t sleep at night with worry. 2011 will be a year of hospital visits again, in fact the next number of years are going to be like that and so the last week of 2010 will be no different to the first week in 2011 in many respects.

However I have to say while I will be delighted to see the back of 2010 I know I am very lucky. Very lucky to be here at all for one, thanks to Clare, very lucky to have spent Christmas at home and not in hospital, very lucky to be fighting this with all my strength, very lucky to have a great mom who is incredible in her strength for both her fight and mine, and very lucky to have such incredible family and friends.

See you all in 2011.
M
xx

A Bitter Pill to Swallow, Figuratively Speaking

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

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

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

The Birkitts Bubble and Being Home

Hi All,

It’s been a while since I’ve had a chance to even think about writing this, for lots of reasons. I had the transplant almost six weeks ago and was discharged from hospital on Friday so it’s been a mad time for all of us.

It was a lot tougher than I thought it was going to be if I’m honest. I guess you don’t really know what to expect but the level in which I was sick was just unbelievable both from the intensive chemo right before to the actually side effects of the transplant as well as emotionally realising what the hell is going on this year.

I don’t remember much of the first week or two and I’m glad about that because I can imagine it wasn’t too pretty to look at. I was sick pretty much every day for the time I was in there until about a week before they let me home and there were days where I couldn't even reacognise myself in the mirror. I know I mentioned before that during my other stays I was allowed to leave my room for walks in the ward but this time due to the fact that I had no bone marrow it was too dangerous so I was confined to the room for a lot of the 5 weeks. That has probably been the most traumatic thing. Not being able to leave somewhere, waking up and knowing you are stuck in the room all day is unimaginable and mentally very challenging on top of all the physical effects of the treatment.

My family have been the most incredible during the weeks in there. My mom was still going through radiotherapy herself so she was coming in to me in the morning, leaving for radio and then back later, she is one hell of a fighter! And Clare and Adam were in every day too, she really is incredible for giving me what seems to be the best bone marrow around. Stephen stayed with me pretty much every night until about 1am which was exhausting for him, I don’t know how he holds it together. I found the nights the worst because they wake you up every few hours to check on you and I found it hard to go back to sleep then so in the end I was on two sleeping tablets and two relaxers to even try sleep through the night. Since I’ve been home I haven’t used any because I like waking up and realising I’m at home in my own bed! I don’t know if Ill ever get over that feeling of being home, it is just a true feeling of peace to sleep in your own bed.

I know a lot of people want to know what’s next with regards the treatment. I am now being treated as an outpatient so I get to live at home but visit the day ward every day or every other day. They have to do blood tests that regularly to see what I need because my body can’t make a lot of the things it needs at the moment and to make sure the cancer is staying away. I need regular infusions of magnesium and fluid as I am on so many tablets a day (honestly the size of my pill box) and they need to check my immune system constantly as that is going to be severely compromised for the next year. I’m on a tablet for the next 6 months that will deliberately suppress my immune system so that Clare’s bone marrow will take over and cure the cancer completely. It means that I will probably pick up infections easily and they have told me I will be admitted again on at least one occasion to treat an infection. This is to prepare you mentally that this journey is by no means over; I’m just at the next stage.

I don’t really know what to make of it all. I literally just get up each day and see how I feel and take it from there. I am finding it hard some days adjusting to being at home because time is just so different out here than in there. I know that makes no sense to anyone who hasn’t gone through this but 8am on the outside world means something so different to in there and I can’t stop thinking about that. Being at home is absolutely fantastic though and I’m still in shock that I’m actually here. I guess it will take time to get into a routine and settle back in to home life.

I say a prayer every night for every patient in birkitts because I know how lucky I am to be at home and getting some proper sleep. I’ll keep you all updated on how the day ward is going. It’s very tiring as you can be sitting waiting for hours to see anyone but as long as I can walk out of the hospital at the end of the day I really don’t mind.

Thanks to everyone who sent me in stuff during my stay- its overwhelming how thoughtful you guys are.

Lots of love
M

The Bone Marrow Speaks!

Well part of the deal of donating my bone marrow to Mairéad was that she would give me (Clare) a chance to write something on her blog so here goes. I also requested peanut m & m’s with the green ones taken out and only red and purple skittles. These were delivered to my bed the evening before my operation, Thanks Stephen :-). I know my writing is not going to be anyway as good as Mairéad’s but I’ll give it a shot.

Mairéad hasn’t managed to write her blog for a while as she’s spent the last few weeks preparing for her bone marrow transplant and then trying to cope with all that goes on after the transplant. In the weeks leading up to the transplant she was at home so it was great for her to be able to sleep in her own bed, to eat non hospital food, to be able to sit outside in the garden and generally just be herself! We even managed a trip to see Fame, the musical, Thanks Emma! She was very tired this time round when she was out but I think she enjoyed just being out of hospital. She also had an awful lot of day appointments in hospital which either Mam, Stephen or myself brought her to. There was a huge amount to prepare for in the run up to the transplant. The doctors had to make sure that Mairéad was ready physically and make sure she had no infections etc. She also had to go to the dentist to check her teeth as an infection in your mouth could be very serious when you have no bone marrow and your immune system is practically non-existent. As well as getting Mairéad prepared I had to undergo a number of tests to make sure I was healthy and I could go under general anaesthetic. I also met with my consultant who had to be a different consultant to Mairéad's as we couldn’t be seen by the same person.

On the 6th September, Mairéad went back into hospital to start her part of the transplant. She had two full days of very intensive chemotherapy on the Tuesday and the Wednesday. For these days she was very tired and had absolutely no energy. It was very hard to see her like this as only a few days earlier she had been at home with us. The worst part of these few days was leaving her at night in the hospital. I would have loved to have wrapped her up in a blanket and have smuggled her out of the ward and brought her home, it was just so hard to leave her.

My part of the transplant began on the Wednesday when I headed into hospital. I was put into a ward with three other women who were all lovely. I have to admit that even though I have never been in hospital before (Thank God!) I wasn’t at all nervous. I was more overwhelmed by the fact that the whole thing was actually happening and I was so honoured that I could do this for Mairéad. The following day (Thursday) I was up showered and ready to go by half seven. The porter came to collect me at eight and off I went to the operating theatre. With regards to my part of the transplant I don’t remember a thing! All I can remember is waking up in the recovery room with one of the surgeons telling me that they were happy with the bone marrow and they were off to get it ready for Mairéad. The next thing I was heading back to the ward where Adam was waiting for me. In the meantime Mairéad had been transferred to St. Luke’s hospital where she had to receive her radiation. This was also another very intensive therapy. The purpose of the radiation and the two days of chemotherapy are to destroy every bit of bone marrow that Mairéad has. That afternoon when Mairéad had returned in the ambulance from her radiation my bone marrow was given to her through a drip through the line that she has in her chest. During this time my mum, Adam, Stephen, my aunt Dee were busy doing shifts between Mairéad’s bed and mine! It was a bit like the scene in Mrs. Doubtfire where Robin Williams is changing characters as he’s going from one date to another in the restaurant. I half expected to see one of them arrive at my bed with their plastic aprons on!!

The actual transplant comes at the end of three very long days which had Mairéad completely wiped out. She was on an awful lot of medication by this stage and she had very, very little energy. Therefore she was asleep for the actual event itself. I was determined however to get myself down to Mairéad to see my bone marrow going into her. However all didn’t go to plan with that idea! Because of the fact that my blood levels were so low on a couple of trips to the bathroom I realised that I wasn’t as mobile as I had hoped and fainted both times! Adam however managed to catch me on both occasions :-). The doctors and nurses who were in charge of me decided that a trip to Mairéad was definitely not on the cards. Thanks to Stephen though who managed to send me a picture on my phone of my bone marrow!!!

The days following the transplant are a bit of a blur to me as I was either in seeing Mairéad or at home resting. I think everyone in the family has been the same as we’ve all been going from home to the hospital and back again. To all of you who have sent cards, called, sent texts etc we really really do appreciate each and every one of them. There’s no chance we can reply to them all as there are literally hundreds each day but definitely keep them coming.

Now, fourteen days on, Mairéad’s blood levels are rock bottom again and she has practically no immune system again which means she can’t go outside her ward and she can only walk around with a mask on inside the ward. The next little while is a waiting game as we wait for her blood counts to recover and let the bone marrow settle into Mairéad’s system and finally begin to work. I know it will work as I’ve sent her my very best bone marrow and I’ve also sent all my love with it too. Xxx

Blood Recovery my ass

I know I gave an update yesterday but I wanted to do another one today and everyone is always telling me to do more!

My bloods have started to recover as of yesterday which meant I could walk around the ward with no mask and could leave the ward with a mask on which was really exciting. Usually once this happens it means you've one step out the door to a few days at home and in my case a bit longer as I prepare for transplant.

Then this morning they said I could get home for the day and as I was getting ready they got my blood test back back and said they had dropped again meaning it is too dangerous for me to go out. I am back to wearing a mask at all times outside my room. I know its for my own safety but I was so gutted. Had a good old cry with my mom and noticed that my eyelashes were all over my hands- so I have chalked this up as not a great day!

I'm grand now- just ordered my din dins- chicken curry and a cuppa tea and I know this is just a blip in the road to getting home. My eyelashes did take a beating though so only have a few left- damn it!

My mom starts radiotherapy this afternoon too so Clare is going with her, again I dont know how Clare is doing all this. Not only my donor but looking after me and mom too! She's just amazing.

Adam came in to keep me company one night last week, kept me up chatting until 1am. He is still working on my room but its almost done I think. They found something like 60 handbags under my bed so I can't wait to see what they are and which ones I had forgotten about...probably 58!

So thats all my news for today. Think I will go and knit a bit. For those of you who are wondering what I am knitting its a straight line so far so I'd imagine it will turn into a really skinny scarf for Dawns little man, Percy!

Lots of Love,
Mairéad

PS Thanks for listening to me being a moany bum xx

PPS Date night is still going strong and on Saturday we watched The Hangover, I got very giddy after! Forgot how funny it was.

Groundhog Day

I haven’t done a blog in a while because it’s like groundhog day in here and I have been really struggling with the isolation this time. It is horrible waking up each day knowing that nothing is going to happen and I am only going to leave the room twice maximum to go for a walk in my ward. I went for 5 walks yesterday.

I just can’t stand that the same thing happens each day. I get woken at 6 for blood tests and from then on I know people are going to be in and out, caterers, cleaners or doctors. I have also had some issues with the sound proofing in this room in that I can hear the man next door to me vomiting which has been the most unpleasant thing about my stay so far. He vomited every day for the 1st two weeks pretty much and he is what the nurses call an “aggressive vomitter”- it’s like something from family guy or south park- horrific. That usually happens from 6am too so the IPod shuffle has been a god send I just blast it in my ears to drown out the noise. Luckily he hasn’t done it for the last 4 days so I’m hoping he’s over the hump of it now because it really is awful.

Two of the girls from work came in to visit me last week which was brilliant and they brought lots of goodies for me which was amazing! It was great to talk about work and normal things- it was almost normal again. They explained how they were all told and I was really touched with how kind people were when they first found out, I’m sure lots of tea was made- I wish I could have been there!

I don’t know why but this week I have really missed my hair too. I can’t wait to get home to wear my wig; I have started to get the hang of accessorising it and making it look natural. I just wish I had my own and can’t imagine how excited I will be when it eventually starts to grow back, which won’t be for a long time. My mom’s is growing back now and it looks brilliant. She’s pretty excited about it too.

I don’t really feel like I settled in to being here this time. The last time I was able to just take it day but day but since I got in here I have been itching to get out and home. I have taken up knitting to try and pass the time and have so far knitted a straight line, which lucky nurse is going to get that!

I had problems with my lines too while here this time. I’m not sure if I’ve explained the lines properly but basically they put a tube into my arm or chest that means they can take blood from there and give me any medication. I had the one in my chest in originally (the hickman) but that got infected so I had one in my arm (the picc). It caused a blood clot in my arm so it had to be pulled half way through my chemo and I had to get one put in the other arm but that caused another clot so I had the hickman put back in last Friday so I’m delighted with that. Its easier and more stable for them to use so I am taking extra good care of it!

I feel like I’m being a big moan in this but I guess that’s what the blog is for.
Thanks again to everyone who has contacted me and sent stuff in to me and thanks to all the family for keeping me company in here, I know we’re all pretty much living in here now but the visits are what get me through the day.

Lots of love,
M xx

Medical Jargon and a bit of good news

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

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

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

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

Hair Today, Gone tomorrow

My hair has started falling out in big pieces the last few days. It's a weird feeling, like when you really need to wash your hair or when it hasn't been rinced properly. It's a strange sensation just seeing it in your hands but my hair is just hair- it will grow back.

I'm "lucky" to have seen my mom go through the same experience a few months ago and she has explained the weird tingly sensation your scalp gets. Plus I don't fear baldness as much because I have seen her without hair for nearly 6 months now and she's still my mom, just like I will still be me!

The wig people are going to come in tomorrow to show me some wigs and once I pick one I'm happy to just shave it all off at this stage- it's more distressing seeing it everywhere now.

Clare got me some cool head scarves online so thats great to have. Most people don't wear anything in here because it's too hot but it will be handy for night when my head is bound to get cold and for at home, when I do get home.

The amount of people who have been emailing me prayers and good wishes is amazing, school friends, college friends and of course my closest friends and Family.

I worry about Stephen sometimes because I am getting all of this love and support and I can only imagine what it's like for him to go home and actually sit down and think that this is really happening. I know if it was the other way round I would be a mess but he is being so amazing- coming in every day. Sometimes I'm too tired to talk so he just sits there happily. He is really amazing. He brought in pictures of all our trips we're been on and I have them stuck up in the room. Aoife got us a beautiful framed picture from her wedding too and that really made my day.

Other than the hair falling out there is little happening. They are letting my blood hit rock bottom after my chemo, which I have finished round 1 of. They let it go to its lowest so that hopefully it's killing all the bad cells. Then they begin to try build it back up so that I can go home for a few days.

My appetite has returned- last week all I could handle was ice cubes and dry cream crackers but the last few days I've had lots to eat which they are happy about. It seems silly to have been worrying about your weight and food before all this! Who really cares as long as you're healthy!

Missing work a lot. They sent me in Abbey News Weekly which I LOVED! It gives me all the news and one of the nurses went to see Bookworms last week so had a chat with her about it. That was great because it's important to remember what you love doing and for me working in Development there was the best job.

Anyway thats all my news- I'm listening to an amazing CD Eoin made for me- it's bloody great, thanks Eoin xx

Lots and lots of love and hugs

M
xx

The ward itself

The ward here is a special ward for 21 people who have a similar thing to me, it's the only unit in Ireland I think. It's weird looking, each section has two doors that need to each open and close before another one opens-it's all meant to protect against infection. My room is the same, it has a small area before you go it to the room for people to wash their hands and wear an apron thing to protect me against bad fashion/germs!

Each room has it's own air conditioning system, I can't open the door or window and I can only leave the ward for tests. I have to wear a mask when leaving my room because the chemo has killed all my cells.

I had a tube put into my chest last week to help me get my treatment easier but unfortunately it started to get an infection so they had to take it out on Tuesday. I got a smaller one put into my arm yesterday.

I forgot to mention Wednesday was Stephens birthday. I wasn't feeling well at all- the chemo was kicking my butt but Adam came to the rescue and got a card for me to sign. I know his family had pizza and cake and his aunt took a picture of him blowing out the candles! All the nurses were lovely and wished him a happy Birthdy too.

I'm just watching Wife Swap- Its so crap- one family worship plants!Honest to God!

Anyway keep me in your thoughts and prayers
Mairéad

From the start I guess

I haven't been feeling to well for about 6 weeks now. I went to London the
week after my birthday and just got this awful headache that wouldnt go away. I
was really tired too so we just took it wasy in London because I just wanted
feeling myself.

When we came home I gave it another week and went to my GP who thought it
was a sinus infection but the pain was so constant and intense that I went for
an MRI and bloodtests myself. You know when you know that something just isnt
reight-thats why I really persued it. I just didnt feel myself.

Anyway to cut more doctors and tests out of the story my GP did more bloods
and phoned me saying something wasnt right with my blood Wednesday two weeks ago
and I went straight into hospital on the Friday morning. I was transferred to
James on the monday morning where they did a bone marrow but at that stage we
kind of knew they werent looking for anything else.

On Monday night the doctor confirmed I have accute Leukemia with both
traits of the AML and ALL classes.

The whole family is completely in shock as I'm sure some of you know my mom
has been battling breast cancer since December.

I have to stay in hospital which is both a good and bad thing, I hate
being stuck in a room all day long but I know it is to protect me from
infecction. Soome days I feel really really positive, in fact most days I do but
today I just feel really sad and angry that this is happening.

I have deciced to write a blog because I want to keep you all involved in
my progression and treatment and I am OVERWHELMED by the amount of support that
its too hard to text and phone you all, all the time!

I know I can do this its just going be hard but hopefully this blog can be
benificial to both me and you all.

Lots of love,

Mairéad