I have been meaning to write this blog for a while now, really since September and a year post transplant. Lots of people over Christmas asked if I was going to update it and I kept meaning to but you know life gets in the way (how lucky I am to say that!) Anyway the tipping decision was last week when we had to put the family cat down after 13 years. When we were in the room saying goodbye I thought back to when I was in the hospital.
Clare brought me in the laptop a few weeks after the transplant because I was so homesick and we looked up Google earth and found my house. The picture had my cat, Meg, sitting on the window sill and as soon as I saw it I cried my eyes out. Everything looked so normal. I ended up using that picture for the rest of my time hoping that I could see Meg on the window sill for real. It really helped me fight to get home.
Last year was another odd year for us- It’s the best way to describe it. It started off very weird and involved being on the cover of every tabloid...thanks Derek bloody Mooney! And of course Clare and Adam got hitched!
I realize now how sick I was when I look back to this time last year. I was still throwing up, had very little hair and generally every day was a challenge. It’s hard to think of myself in that way now because everything is getting back to “normal”. I’m down to one hospital visit every 3 months now which is great, it’s like a personal NCT test.
I’ve been in practically every machine in St James now and over the last few months have had my lungs, heart and bones scanned for any signs that the chemo and radiation affected them and all is as it should be for the most part. It’s hard trying to get back to normal life; every so often I remember what it was like to be in that ward. I was really looking forward to getting the bus again and gong to work and living a normal life, including the boring bits.
I was in the hospital earlier today and someone said to me that life is like a dart board with playing cards stuck to it. The cards are the major thing that happen in our lives like weddings, Christmas and even cancer, and the space in between is everyday life. When you add up the amount of space the cards take up on the overall dart board it’s only about 30% and the rest is everyday chores, bus trips, going to the bank and life in general. The boring stuff equates to 70% of your overall life. Leukaemia will hopefully, over time, be a small story in my life and I look forward to that supposed 70% of boring life. I’m lucky to have it.
Overall I’m doing really well. They didn’t even recognise me in the hospital earlier. One good thing is I get loads of complements when I meet people...keep up the good work and I’ll keep up mine!
Lots of Love,
Mairéad
Thursday, February 2, 2012
Thursday, March 3, 2011
No News is Good News
Hi All,
I haven’t written my blog in ages just because I have been trying to get back to as normal a life as possible and I don’t think you guys want to hear about my day to day activities! I get very excited about very little achievements so I dont want to bore you with it all!
I’m doing well and have gotten some amount of energy back. From November to February I was extremely tired. It’s hard to explain the type of tiredness, it’s not sleepy tired its sheer exhaustion where I can’t do anything but sit on the couch. Usually if I have a day like that I just accept it and by the next day I have a bit more energy again and others I just sit and cry about how the hell this happened at all.
My hospital visits are still very regular, I’m up here three times this week but usually it’s once or twice. They had changed me to once every two weeks but my doctor changed some of my medication recently and they need to keep a closer eye on me. Each tablet has about 70 possible side effects so it all depends on the bloods.
I’m trying my best to get on with things and get back to some sort of normal life so yesterday I drove myself up to my Doctors. I spent the rest of my day lying on the couch as I haven’t driven myself in nearly a year but I was delighted with myself. They have also relaxed some of my banned foods including salad and unpeeled fruit which is great news. Peeling a strawberry had its challenges (thanks Dee!). I am also allowed out a bit more now that flu season has peaked.
It’s very hard to write the blog now because I’m at this in-between stage where I can slowly do so called “everyday” things to you but that are my full day’s activity. My head is willing me to just be able to go into work and get back to normal but my body is lagging behind with tiredness. That can be very frustrating.
I am so excited about hopefully growing in strength and energy and am really looking forward to the summer (especially a BBQ in Stephens) as I spend all last summer in isolation. I am still so excited to hear airplanes and general outside noises, which I’m sure, is very irritating to hear me go on and on about the sky and birds! You’ll be glad to know Stephen and I still do date night most weeks, and we are trying to get back to some sort of normality little by little.
Struggling a bit with my appearance because I don’t really think I look like I used to look at all. My hair is dark brown and curly and obviously very short. I have had people walk by my or look at me as if they know me from somewhere but don’t really recognise me which is awkward but I am delighted to have hair and to just be keeping well physically and I need to just concentrate on that.
That’s it for now I guess.
Lots of love,
Mairéad xx
I haven’t written my blog in ages just because I have been trying to get back to as normal a life as possible and I don’t think you guys want to hear about my day to day activities! I get very excited about very little achievements so I dont want to bore you with it all!
I’m doing well and have gotten some amount of energy back. From November to February I was extremely tired. It’s hard to explain the type of tiredness, it’s not sleepy tired its sheer exhaustion where I can’t do anything but sit on the couch. Usually if I have a day like that I just accept it and by the next day I have a bit more energy again and others I just sit and cry about how the hell this happened at all.
My hospital visits are still very regular, I’m up here three times this week but usually it’s once or twice. They had changed me to once every two weeks but my doctor changed some of my medication recently and they need to keep a closer eye on me. Each tablet has about 70 possible side effects so it all depends on the bloods.
I’m trying my best to get on with things and get back to some sort of normal life so yesterday I drove myself up to my Doctors. I spent the rest of my day lying on the couch as I haven’t driven myself in nearly a year but I was delighted with myself. They have also relaxed some of my banned foods including salad and unpeeled fruit which is great news. Peeling a strawberry had its challenges (thanks Dee!). I am also allowed out a bit more now that flu season has peaked.
It’s very hard to write the blog now because I’m at this in-between stage where I can slowly do so called “everyday” things to you but that are my full day’s activity. My head is willing me to just be able to go into work and get back to normal but my body is lagging behind with tiredness. That can be very frustrating.
I am so excited about hopefully growing in strength and energy and am really looking forward to the summer (especially a BBQ in Stephens) as I spend all last summer in isolation. I am still so excited to hear airplanes and general outside noises, which I’m sure, is very irritating to hear me go on and on about the sky and birds! You’ll be glad to know Stephen and I still do date night most weeks, and we are trying to get back to some sort of normality little by little.
Struggling a bit with my appearance because I don’t really think I look like I used to look at all. My hair is dark brown and curly and obviously very short. I have had people walk by my or look at me as if they know me from somewhere but don’t really recognise me which is awkward but I am delighted to have hair and to just be keeping well physically and I need to just concentrate on that.
That’s it for now I guess.
Lots of love,
Mairéad xx
Friday, December 31, 2010
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
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
Saturday, November 27, 2010
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
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
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
Wednesday, October 20, 2010
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
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
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