Thursday 28th June
Bend over madam so you're at right angles with the floor and joogle" instructs the sargeant major like shop assistant. There's no messing here, I'm not even going to risk not doing as instructed, she's fearsome but I'm slightly hesitant and as I bend I glance around for a hidden camera, perhaps Jeremy Beadle is about to jump out (or John Barrowman for you younger readers).
"Really? Bend over and joogle?" I ask in a slightly perplexed manor.
"Yes madam, bend over and joogle ". I do as I'm told. I bend over and joogle and shimmy to the best of my ability. Having been caught out several times wearing some dodgy old undies during the past few hospital visits I have decided to invest in some nice new boulder holders. This is a big decision because I don't really like shopping for undies and since I'm not particularly relishing this shopping trip I've decided to make it as pleasurable as possible. Where does the queen go for her undies....Rigby & Pellar ofcourse, good enough for the queen, good enough for me. So here I am, topless in front of another stranger (common occurrence these days!), bending over and joogling. I bet the queen doesn't have to do this. It reminds me of one of those executive perpetual motion toys where there are lots of balls hanging down in a row, you lift one and let it go and it then makes the one at the other end move as it strikes the row. That's what I feel like right now. Before joogling commences I think I really should be shouting "fore" like they do on a golf course to warn people that there's very shortly going to be something coming at speed in their direction. Don't stand too close or you might end up with more than you bargained for! Anyway, the joogling was completed and mission accomplished. Sergeant major sent me marching home with a couple of well fitted acceptable new bras for my next hospital visit.
The purpose of this visit is to get my picc line put in. This is a small plastic tube put into one of the large veins in my arm, round about the bicep. It's one tube as it comes out of my arm, then it splits into two tubes with little valves and bungs on the end. These will be used for the various blood transfusions and platelet transfusions as well as to administer the ATG. The benefit of it is that once it's in no more nasty needles are required. Disadvantage,- I now have a hosepipe attached to my arm which I'm not suppose to get wet.
Moo is quite interested in this whole picc line thing and has been asking me questions about it. The last text from him asked me if I would get Andy to film the whole procedure and post it on you tube. He gets a loving sisterly reponse from me : "Never mind you tube, you are a tube!"
Ok, time to go to hospital. I don't think it takes long to put the picc line in. I've to be there at 10 so I should be back by lunch time. I've thought very carefully about what it might involve revealing underwear wise so my new undies are on, short sleeved top on, trousers on. I think that should all be ok. We arrive at hospital bang on time and a very lovely nurse called Pete is there waiting for us, he's got everything all set up and ready to go. Bonus, for the first time there's no need for me to reveal anything, I don't have to take any clothes off. Woohoo, get the party streemers out.
Pete explains what he's going to do, he's going to use the ultrasound to scan my arm, find the appropriate vein and guide a big needle into it. He's then going to thread the tube along the vein using a guide wire so it travels up my arm, along my chest and then turns down to travel down a bit further. "It's going in quite far then!" I exclaim. I can imagine Moo's response to this rediculous comment from me and a little voice in my head exclaims "No shit Sherlock." Pete has to get gowned up in a very fetching sterile blue gowny thing that looks like it's more of a circus tent than anything else. He explains to me that they buy them to fit the largest person in the team, all I can say is that she's obsiously VERY large.
The whole procudure took about half an hour, Andy watched the screen, I looked anywhere but at the screen. During the time I found out that Pete likes Wimbledon, is growing his own strawberries, is half Irish but from somewhere up north and doesn't like the sun or going on holiday.
It's done, the picc is in, can I go now? I should have known better.
"You need to have a chest xray and an ECG to check the line is in the right position". It's all ok, I know what these entail and I can cope with them, afterall I have decent clothes on today!
Andy and I toddle off in the direction of the X-ray suite. There are two other people waiting, one elderly gentleman and another man probably in his late 30's.
"Would Mr Monday, Wayne Sleep (I kid you not!) and Al.. al.. alisa Macallister follow me please". I know she means me, strangers never ever get my name right but I'm used to it, I respond to anything that contains an a,l and an s. The wrong surname is the norm aswell. We're shown through to some swimming pool like changing cubicles and one at a time handed a blue gown. Mr Monday is first. The nurse gives him his goonie, tells him to get undressed from the waist up then take a seat in the little waiting area. Now, Mr Monday is an elderly gentleman with a walking stick. He's wearing a poloshirt and has trousers that are held up by braces. As soon as he hears the words "undressed from the waist up" the stick has been dropped and one arm is already out of the braces. He's not even in the cubicle yet. In his haste as he takes his arm out of his braces, one bit has pinged off and has now hit the nurse. She lest out a minor yelp, hurridly picks up his stick and directs him into the cubicle before he could do any more damage.
Next up is Wayne Sleep. As soon as I hear the name Wayne Sleep I automatically think of the small springy dancer with curly hair from a few decades ago. This is most definately not him. This Wayne is over 6ft tall and has a shaved head. He's given his goonie and disappears into the cubicle. I'm handed mine and I toddle off. There's no shopping basket like last time to put your clothes in, this time we're allowed to leave everything in the cubicle, except valuables. These gowns are a bit different from the others, they go over your head, down to your knees but have no ties at the back. Note to self to be careful.
The nurse has told us when we're changed to wait in a small waiting area and it really is tiny. It's like sitting on a train where you're knees touch the person opposite you. My gown is on and I fling my handbag over my shoulder and head out. Wayne is already sitting waiting so I squeeze past his knees and plonk myself down. He's giving me a funny look. As I glance down I notice my handbag strap has caught my gown and I have more than a little side boob on show. With a sharp intake of breath a very quiet "oh shit" , I cover myself quickly and rummage around in my bag like I haven't noticed. Wayne has some decidedly dodgy tattoos, one arm has a massive black star on it, a name in curly wurly writing and a few chinese symbols. The other arm has roadrunner I think. As I look across I start to get a fit of the giggles seeing this great big man with a shaved head and dodgy tattoos wearing what is effectively a blue dress. This is really not the time to get the giggles. Thankfully the nurse appears and I'm called first.
The xray took yonks, it's usually really quick but after 10 minutes of holding my breath periodically and turning purple the nurse came to the conclusion that the machine wasn't working and we changed room.
Just as well they did the xray because the lovely little tube in my arm and chest had not followed the route it was suppose to and had to be "adjusted". Pete pulled it out a couple of centimeters and said that should do the trick. They said the blood flow would correct it and steer it in the right direction. I do hope so.
The ECG was fine, it was done by a nice female nurse called Nadine and was very similar to the previous one carried out by the lovey John, although I'm still not sure what the sticky bits on the ankles were all about this time? John didn't stick anything anywhere near my ankles!
I'm told I'm allowed to go home, I just need to pop back tomorrow to get the dressing changed. Treatment is confirmed to start on Monday. That leaves me Friday, Saturday and Sunday to get ready.
Most people would probably be thinking about all sorts of important and sensible things knowing that they are going to be in hospital for 2-3 weeks. What is concerning me.......what am I going to wear? Is it jammies for a fortnight, do you get dressed in the daytime, long sleeves or short sleeves, jammies or night shirt? Oooh, this is going to require alot of thought. I think another shopping trip may be in order.
Moo has taken a great interest in hearing about the picc line procedure and throughout the day has been texting me to see if I've had it done yet. I take a picture of my new appendage and text it to him. The text conversation goes like this once he has the photo:
Moo: Bloody hell!!! If you open the valve on the end will blood come shooting out like a water pistol!?!?
Me: I'm not allowed to touch the valves. I'm covering it up with a bandage.
Moo: Go on, are you not tempted to open a valve and see if anything comes shooting out?
Me: No I'm not
Moo: Really? Go on
Me: No. If air gets in I'm dead
Moo: Best leave well alone then.
Me: That's what I thought
Moo: Right, I'm off for lunch, think I'll have spaghetti!
Saturday, 30 June 2012
Wednesday, 27 June 2012
8. The yetti and the cakes
20th June
There are cakes everywhere. Chocolate cake, sponge cake, lemon drizzle cake, brownies and melting moments. I'm not in a shop, I'm standing in the middle of my kitchen admiring my handiwork. I've baked them all myself and I'm now wondering what to do with them so I don't eat them all? Anyone would be forgiven for thinking I was going into business supplying the local coffee shops however I'm not. I'm worrying about the treatment that is going to be starting in a few days and when I worry I bake.
The prof has told me all about the treatment. Basically they are going to give me two drugs (ATG and cyclosporine) to dampen down my immune system. This should stop the immune system attacking my bone marrow and give it a chance to start working again, in theory.
This is where it gets interesting, ATG is a horse serum. They are going to give me the horse serum via an intravenous drip for 4 days. On day one it will drip in very slowly over 18 hours and if I don't have an adverse reaction, on day two they'll speed it up to a dazzling warp speed so it only takes 12 hours to administer, then the same on days 3 & 4. I will take cyclosporine at the same time. I don't generally take pills for anything infact I struggle to think of the last time I did. The first thing that enters my mind are the side effects.
"You may find that you're hair grows alot" says Prof Marsh.
Hmm, that doesn't sound too bad, this may be a good opportunity to experiment with some new haircuts and if they're a disaster, so what, no problem, it will grow back superduper quickly, sounds good to me. I think I better just check I've understood this bit of info.
"My hair will grow quickly, sounds good to me." I smile at the professor.
Prof Marsh gives me a bit of a funny look, "All you hair will grow quite quickly and may become quite thick" she says slowly.
I think about this and then it dawns on me, I splutter out "all my hair, you mean ALL my hair?"
At this point Andy decides to chip in to the conversation, he thinks this sounds great from a male point of view "so, if men take this drug does it cure baldness?" What are you talking about man, never mind finding the male population a cure for baldness, I'm far more concerned with the fact that I'm about to turn into a yetti of grand proportions.
Prof Marsh pipes up "Well, it doesn't cure male baldness unfortunately". She then looks at me "You wont grow hair anywhere you don't already have it, but anywhere you do have it, it may well grow quite alot, e.g. hair on your head, eyebrows, hair on your arms, or if you have any stray hairs on your chin you may want to tweezer them out". She stops and has obviously clocked the look of alarm on my face.
Hairy eyebrows, I'm going to have Dennis Healey hairy eyebrows. Hairy arms, I'm going to have mega hairy arms that are going to turn into small pets that need to go to the dog groomer for a weekly trim. Stray hairs on chin, has she seen something on my chin that I've never noticed before?? (note to self to do a very thorough chin check for hairs when I get home). I think I may have to invest in one of those god awful mirrors you get in hotels that make every little pore on your face look like a volcano. I quickly think what other parts of the body have hair then realise it's much easier to think what parts don't have hair and come up with the following:
palm of hands,
eyeballs
tongue
soles of feet (notice I don't say top of my feet, I have a stray hair on my toe, well that's going to turn into the giant bean stalk by all accounts, no more flipflops for me this summer! I have visions of small animals jumping onto my foot and scampering up this monstrosity to get to the clouds.
I'm going to be hairy. I'm going to make small children cry in the street when they look at me. It suddenly hits me like a thunder bolt, what if my legs get so hairy that passing dogs mistake them for a fellow canine and start doing unthinkable things against them. Horror! I have a plan, it's not a great plan but it's a plan, rather than take up a major stakeholder position with Bic razors I shall buy a new wardrobe that consists of Burkas. Yes, everything will be covered up and no-one will be any the wiser. I turn to Andy "you're just going to have to get use to having a yetti in the house". Dougal always wanted a pet, maybe I'll count as one shortly?!?
"How long will this hairy phase last?" I say. "Just as long as you're taking cyclosprine" is the answer. Well that's not so bad is it. "How long will I be taking it for?" I ask looking in hope at the prof. "For the minimum of a year, maybe quite a bit longer"she says. Oh good god, I shall just have to look on the bright side, bring on the skiing holidays, bring on a treck to the north pole, this yetti is going to have enough insulation to visit the coldest places on the planet.
So the first 4 days in hospital I'm going to be given ATG. The remaining time is to deal with serum sickness which is the reaction your body has to the horse serum. You can never tell how severe your reaction will be, but in anticipation the doctors always give you steroids to counteract the reaction. Steroids aren't great for you so they're given for as short a time as possible, I think I will have them for a maximum of 3 weeks (but don't quote me on that). When they mention steroids I'm thinking, oooh, maybe if I sneek in a wee dumbell or two I can do a bit of exercise and come out with nicely toned arms. The doc puts me right -
"You may find that these increase your appetite somewhat" she says.
I'm hungry all the time as it is, you're going to be making me even hungrier?
I'm going to be hairy and now I'm going to be fat too. I'm going to be a fat hairy yetti. That's it, a burka is the only answer. I wonder if they do them in any colour other than black? If not, this could be a niche in the market, this could be my entrapreneurial debut! It could make me millions.
Right, I'm going to stop listening to anymore side effects now, I've heard quite enough thankyou very much.
That was all last week, now it's Wednesday night and tomorrow I'm going to hospital to get my picc line put in. It's bound to be another adventure, I shall report back without fail. In the meantime I'm going to look in the mirror and admire my relatively hair free self :-)
There are cakes everywhere. Chocolate cake, sponge cake, lemon drizzle cake, brownies and melting moments. I'm not in a shop, I'm standing in the middle of my kitchen admiring my handiwork. I've baked them all myself and I'm now wondering what to do with them so I don't eat them all? Anyone would be forgiven for thinking I was going into business supplying the local coffee shops however I'm not. I'm worrying about the treatment that is going to be starting in a few days and when I worry I bake.
The prof has told me all about the treatment. Basically they are going to give me two drugs (ATG and cyclosporine) to dampen down my immune system. This should stop the immune system attacking my bone marrow and give it a chance to start working again, in theory.
This is where it gets interesting, ATG is a horse serum. They are going to give me the horse serum via an intravenous drip for 4 days. On day one it will drip in very slowly over 18 hours and if I don't have an adverse reaction, on day two they'll speed it up to a dazzling warp speed so it only takes 12 hours to administer, then the same on days 3 & 4. I will take cyclosporine at the same time. I don't generally take pills for anything infact I struggle to think of the last time I did. The first thing that enters my mind are the side effects.
"You may find that you're hair grows alot" says Prof Marsh.
Hmm, that doesn't sound too bad, this may be a good opportunity to experiment with some new haircuts and if they're a disaster, so what, no problem, it will grow back superduper quickly, sounds good to me. I think I better just check I've understood this bit of info.
"My hair will grow quickly, sounds good to me." I smile at the professor.
Prof Marsh gives me a bit of a funny look, "All you hair will grow quite quickly and may become quite thick" she says slowly.
I think about this and then it dawns on me, I splutter out "all my hair, you mean ALL my hair?"
At this point Andy decides to chip in to the conversation, he thinks this sounds great from a male point of view "so, if men take this drug does it cure baldness?" What are you talking about man, never mind finding the male population a cure for baldness, I'm far more concerned with the fact that I'm about to turn into a yetti of grand proportions.
Prof Marsh pipes up "Well, it doesn't cure male baldness unfortunately". She then looks at me "You wont grow hair anywhere you don't already have it, but anywhere you do have it, it may well grow quite alot, e.g. hair on your head, eyebrows, hair on your arms, or if you have any stray hairs on your chin you may want to tweezer them out". She stops and has obviously clocked the look of alarm on my face.
Hairy eyebrows, I'm going to have Dennis Healey hairy eyebrows. Hairy arms, I'm going to have mega hairy arms that are going to turn into small pets that need to go to the dog groomer for a weekly trim. Stray hairs on chin, has she seen something on my chin that I've never noticed before?? (note to self to do a very thorough chin check for hairs when I get home). I think I may have to invest in one of those god awful mirrors you get in hotels that make every little pore on your face look like a volcano. I quickly think what other parts of the body have hair then realise it's much easier to think what parts don't have hair and come up with the following:
palm of hands,
eyeballs
tongue
soles of feet (notice I don't say top of my feet, I have a stray hair on my toe, well that's going to turn into the giant bean stalk by all accounts, no more flipflops for me this summer! I have visions of small animals jumping onto my foot and scampering up this monstrosity to get to the clouds.
I'm going to be hairy. I'm going to make small children cry in the street when they look at me. It suddenly hits me like a thunder bolt, what if my legs get so hairy that passing dogs mistake them for a fellow canine and start doing unthinkable things against them. Horror! I have a plan, it's not a great plan but it's a plan, rather than take up a major stakeholder position with Bic razors I shall buy a new wardrobe that consists of Burkas. Yes, everything will be covered up and no-one will be any the wiser. I turn to Andy "you're just going to have to get use to having a yetti in the house". Dougal always wanted a pet, maybe I'll count as one shortly?!?
"How long will this hairy phase last?" I say. "Just as long as you're taking cyclosprine" is the answer. Well that's not so bad is it. "How long will I be taking it for?" I ask looking in hope at the prof. "For the minimum of a year, maybe quite a bit longer"she says. Oh good god, I shall just have to look on the bright side, bring on the skiing holidays, bring on a treck to the north pole, this yetti is going to have enough insulation to visit the coldest places on the planet.
So the first 4 days in hospital I'm going to be given ATG. The remaining time is to deal with serum sickness which is the reaction your body has to the horse serum. You can never tell how severe your reaction will be, but in anticipation the doctors always give you steroids to counteract the reaction. Steroids aren't great for you so they're given for as short a time as possible, I think I will have them for a maximum of 3 weeks (but don't quote me on that). When they mention steroids I'm thinking, oooh, maybe if I sneek in a wee dumbell or two I can do a bit of exercise and come out with nicely toned arms. The doc puts me right -
"You may find that these increase your appetite somewhat" she says.
I'm hungry all the time as it is, you're going to be making me even hungrier?
I'm going to be hairy and now I'm going to be fat too. I'm going to be a fat hairy yetti. That's it, a burka is the only answer. I wonder if they do them in any colour other than black? If not, this could be a niche in the market, this could be my entrapreneurial debut! It could make me millions.
Right, I'm going to stop listening to anymore side effects now, I've heard quite enough thankyou very much.
That was all last week, now it's Wednesday night and tomorrow I'm going to hospital to get my picc line put in. It's bound to be another adventure, I shall report back without fail. In the meantime I'm going to look in the mirror and admire my relatively hair free self :-)
Tuesday, 26 June 2012
7. Crayola and the boulder holder
30th May 2012
I'm going on a day trip to London. We're off to see the prof at Kings College Hospital. In the last couple of months I've had 5 blood transfusions & two bone marrow biopsies. Leukaemia has been ruled out, woohoo :-) but I've been sent to Kings to see the UK's God of Aplastica Anaemia, prof Judith Marsh (yes guys, it's confirmed, God is a woman!) to confirm that it is Aplastic Anaemia and not another similar thing called Mylodysplasia (MDS).
Now here's a thing, I didn't know anything about blood transfusions before all this started and when I talk to people about it a funny thing happens; men always always always ask the same question first........."how does it work? Do you have one tube going in one arm and another tube going out?"
I can categorically confirm the answer to this is no. You have one tube going in your arm and that's it. There's no tube going out, this is a one way ticket in. Your body has the capacity to receive an extra few pints of blood, it goes in and it stays in. The result is that when you leave hospital you do feel like you've been on a 26 hour flight to Australia, your fingers feel very puffy, everything just feels a bit swollen in general.
Today's plan is as follows:
10 a.m. See Prof Marsh
10.45 Have blood taken for tests
11a.m. Home in plenty of time of school pick up.
My actual hospital trip ended up as follows:
See Prof Marsh
Chest Xray
E.C.G.
Have bloods done
Bone Marrow Biopsy (Where the blooming heck did that come from?? If I'd know about it I'd have put my lucky pants on!)
Home at 5.30pm 2 hrs late for school pick up.
We met the prof, she asked me a hundred questions, answered a hundred of ours and gave us a huge amount of her time for which we were very grateful. The night before I had googled Prof. Marsh to see if I could find a photo of her, I wanted to know if the she God was going to be scarey. I couldn't have been more wrong. A very lovely lady indeed.
Next up was the chest xray - pretty uneventful. Go in a changing room, put your clothes in a shopping basket (the local tesco must be wandering where all their baskets have gone, I wonder if they'll give me a reward for info which leads to their safe return?)Bung on a goonie, (that's a scottish word of a hospital gown), you know, one of those things that covers everything from the front and nothing from the back. Carry said shopping basket into xray room, stand where your told, click, job done. Go and get dressed.
ECG. VERY EVENTFUL
Now, are you sitting comfortably. I wasn't, I wasn't even lying comfortably. If I thought the CT scan debarcle that I'd gone through a few months earlier was embarrassing I was about to get a shock. I'm not altogether sure why they do an ECG but they do. I was sitting in the waiting area patiently when a nurse called my name and another ladies name. We followed her through to the scanning room where there were two areas separated by hospital curtains. "This is John, he'll be doing your ECG Miss McMaster, I'll do yours Mrs Jones" the nurse said, pointing to someone that had walked in the room behind me. I sighed and turned round to see John. John was 6ft tall, very muscly, a little bit gorgeous and looked about 23.
"Hi, I'm going to do your ECG today, just get undressed from the waist up behind the curtain and call when your ready" instructed John, very nonplussed about the whole thing. I, on the other hand, wanted the ground to swallow me up. Shit, I've got to get undressed, what underwear have I put on? Panic, it's not even nice underwear. Wait a minute, do I have to take my underwear off,?What did he say, what clothes do I have to take off? Did he say to take my clothes off? Panic, I can't even remember what he said I'm so flustered now. I look like a total spoon, stick my head out from the curtain and ask John what he just said. I make sure I listen this time.
"You just need to get undressed from the waist up Miss McMaster" John instructs once more.
Oh man, I did hear him correctly. Get undressed from the waist up. "What, everything off from the waist up?" I question. "Yes" is the reply. Well, the one and only saving grace about this is the fact that no one needs to see the very dull and boring bra I've put on today. This nanosecond of relief is short lived as the realisation hits me that I'm going to be topless. Oh my gosh (or words to that effect, mum's probably reading this so best not swear).
When you've had children there's certain things that you just don't do. Taking your boulder holder off infront of strangers is most definitely one of them. Pre children boobs defy gravity, it's a fact. Post children, boobs and gravity are in cohoots, their best buddies and gravity leads many things astray, boobs being one of them, big time. If your boobs are of the variety that can pass the pencil test, gravity will be there waiting. Never mind the pencil test, how about boobs that could cope with the full 24 colour crayola set? We're talking serious stuff here. (if you're a male reading this, I'm not going to explain what the pencil test is, just ask any female, if you're really lucky she might even demonstrate!)
This could be worse, I could have put a dress on, in which case that would have to come off too. Ohhhh, that doesn't even bare thinking about. I tell myself to take a big breath, I have trousers on, everything is going to be ok. Breathing in and standing with my arms across my chest (holding my boobs up behind my crossed arms which strategically puts them in the position they would have been 20 years ago) I tell John I'm ready.
"Please lie down on the bed Miss McMaster and put your arms at your side" John instructs as he heads over to switch the ECG machine on. Oh shit, this can't get any worse. Standing up is one thing, lying down takes us into another realm altogether when it comes to unsupported boobs. At least when you're standing up, they only head south. When you lie down they head North, South, East and West. The best I can do is to lie down with my arms very tightly to my side and like a wooden toy soldier. I think I'm doing ok, until John says "your arms need to be completely flat on the bed". Breathing in I slowly put my arms down and the inevitable happens, everything else follows. I just need to get this over and done with now. "How long is this going to take?" I ask.
"20 seconds if you're relaxed, a few minutes if you're not" John replies, still fiddling about with the ECG machine. He's going to get such a shock when he turns round and sees this apparition on the bed.
I tell myself to take big breaths and be done with it. It can't get any worse. How wrong I was.
"I'm just going to put these 12 sticky patches on your chest area" (yes 12, that's not a typo)John tells me and with that starts to put little sticky things all over me. Some of the sticky things need to go underneath the bits that my boobs have now spread over. He may as well have had a big pancake scoop in his hand to lift them up and slap the sticky things on underneath.
Twenty seconds later we're done and everything that happened above now happens in reverse; unstick the 12 sticky things etc etc etc.
All done. John hands me my ECG printout and leaves me to get dressed. I've never been so glad to get dressed in all my life. Normality is restored once again.
After the ECG anything would seem like a breeze. I had 18 viles of blood taken, it was just as well I'd had a transfusion a couple of days before. I then had the pleasure of a surprise bone marrow biopsy. I have to admit my heart sank slightly as it was the third one in three months and it was done with just a local anaesthetic this time.
Three weeks later and I have the results, it's definitely Aplastic Anemia and we have a way forward with treatment that involves a few weeks in hospital, dampening down my immune system and horse serum.....
I'm going on a day trip to London. We're off to see the prof at Kings College Hospital. In the last couple of months I've had 5 blood transfusions & two bone marrow biopsies. Leukaemia has been ruled out, woohoo :-) but I've been sent to Kings to see the UK's God of Aplastica Anaemia, prof Judith Marsh (yes guys, it's confirmed, God is a woman!) to confirm that it is Aplastic Anaemia and not another similar thing called Mylodysplasia (MDS).
Now here's a thing, I didn't know anything about blood transfusions before all this started and when I talk to people about it a funny thing happens; men always always always ask the same question first........."how does it work? Do you have one tube going in one arm and another tube going out?"
I can categorically confirm the answer to this is no. You have one tube going in your arm and that's it. There's no tube going out, this is a one way ticket in. Your body has the capacity to receive an extra few pints of blood, it goes in and it stays in. The result is that when you leave hospital you do feel like you've been on a 26 hour flight to Australia, your fingers feel very puffy, everything just feels a bit swollen in general.
Today's plan is as follows:
10 a.m. See Prof Marsh
10.45 Have blood taken for tests
11a.m. Home in plenty of time of school pick up.
My actual hospital trip ended up as follows:
See Prof Marsh
Chest Xray
E.C.G.
Have bloods done
Bone Marrow Biopsy (Where the blooming heck did that come from?? If I'd know about it I'd have put my lucky pants on!)
Home at 5.30pm 2 hrs late for school pick up.
We met the prof, she asked me a hundred questions, answered a hundred of ours and gave us a huge amount of her time for which we were very grateful. The night before I had googled Prof. Marsh to see if I could find a photo of her, I wanted to know if the she God was going to be scarey. I couldn't have been more wrong. A very lovely lady indeed.
Next up was the chest xray - pretty uneventful. Go in a changing room, put your clothes in a shopping basket (the local tesco must be wandering where all their baskets have gone, I wonder if they'll give me a reward for info which leads to their safe return?)Bung on a goonie, (that's a scottish word of a hospital gown), you know, one of those things that covers everything from the front and nothing from the back. Carry said shopping basket into xray room, stand where your told, click, job done. Go and get dressed.
ECG. VERY EVENTFUL
Now, are you sitting comfortably. I wasn't, I wasn't even lying comfortably. If I thought the CT scan debarcle that I'd gone through a few months earlier was embarrassing I was about to get a shock. I'm not altogether sure why they do an ECG but they do. I was sitting in the waiting area patiently when a nurse called my name and another ladies name. We followed her through to the scanning room where there were two areas separated by hospital curtains. "This is John, he'll be doing your ECG Miss McMaster, I'll do yours Mrs Jones" the nurse said, pointing to someone that had walked in the room behind me. I sighed and turned round to see John. John was 6ft tall, very muscly, a little bit gorgeous and looked about 23.
"Hi, I'm going to do your ECG today, just get undressed from the waist up behind the curtain and call when your ready" instructed John, very nonplussed about the whole thing. I, on the other hand, wanted the ground to swallow me up. Shit, I've got to get undressed, what underwear have I put on? Panic, it's not even nice underwear. Wait a minute, do I have to take my underwear off,?What did he say, what clothes do I have to take off? Did he say to take my clothes off? Panic, I can't even remember what he said I'm so flustered now. I look like a total spoon, stick my head out from the curtain and ask John what he just said. I make sure I listen this time.
"You just need to get undressed from the waist up Miss McMaster" John instructs once more.
Oh man, I did hear him correctly. Get undressed from the waist up. "What, everything off from the waist up?" I question. "Yes" is the reply. Well, the one and only saving grace about this is the fact that no one needs to see the very dull and boring bra I've put on today. This nanosecond of relief is short lived as the realisation hits me that I'm going to be topless. Oh my gosh (or words to that effect, mum's probably reading this so best not swear).
When you've had children there's certain things that you just don't do. Taking your boulder holder off infront of strangers is most definitely one of them. Pre children boobs defy gravity, it's a fact. Post children, boobs and gravity are in cohoots, their best buddies and gravity leads many things astray, boobs being one of them, big time. If your boobs are of the variety that can pass the pencil test, gravity will be there waiting. Never mind the pencil test, how about boobs that could cope with the full 24 colour crayola set? We're talking serious stuff here. (if you're a male reading this, I'm not going to explain what the pencil test is, just ask any female, if you're really lucky she might even demonstrate!)
This could be worse, I could have put a dress on, in which case that would have to come off too. Ohhhh, that doesn't even bare thinking about. I tell myself to take a big breath, I have trousers on, everything is going to be ok. Breathing in and standing with my arms across my chest (holding my boobs up behind my crossed arms which strategically puts them in the position they would have been 20 years ago) I tell John I'm ready.
"Please lie down on the bed Miss McMaster and put your arms at your side" John instructs as he heads over to switch the ECG machine on. Oh shit, this can't get any worse. Standing up is one thing, lying down takes us into another realm altogether when it comes to unsupported boobs. At least when you're standing up, they only head south. When you lie down they head North, South, East and West. The best I can do is to lie down with my arms very tightly to my side and like a wooden toy soldier. I think I'm doing ok, until John says "your arms need to be completely flat on the bed". Breathing in I slowly put my arms down and the inevitable happens, everything else follows. I just need to get this over and done with now. "How long is this going to take?" I ask.
"20 seconds if you're relaxed, a few minutes if you're not" John replies, still fiddling about with the ECG machine. He's going to get such a shock when he turns round and sees this apparition on the bed.
I tell myself to take big breaths and be done with it. It can't get any worse. How wrong I was.
"I'm just going to put these 12 sticky patches on your chest area" (yes 12, that's not a typo)John tells me and with that starts to put little sticky things all over me. Some of the sticky things need to go underneath the bits that my boobs have now spread over. He may as well have had a big pancake scoop in his hand to lift them up and slap the sticky things on underneath.
Twenty seconds later we're done and everything that happened above now happens in reverse; unstick the 12 sticky things etc etc etc.
All done. John hands me my ECG printout and leaves me to get dressed. I've never been so glad to get dressed in all my life. Normality is restored once again.
After the ECG anything would seem like a breeze. I had 18 viles of blood taken, it was just as well I'd had a transfusion a couple of days before. I then had the pleasure of a surprise bone marrow biopsy. I have to admit my heart sank slightly as it was the third one in three months and it was done with just a local anaesthetic this time.
Three weeks later and I have the results, it's definitely Aplastic Anemia and we have a way forward with treatment that involves a few weeks in hospital, dampening down my immune system and horse serum.....
Sunday, 24 June 2012
6. Tutti frutti & the giant polo
My brother is staying with us just now. I love it when Moo comes to stay. Yes, we call him Moo, needless to say that's not his proper name, my parents weren't that cruel, although they did think about calling one of my other brothers Bently Earl. Luckily mum managed to talk dad out of that one and he ended up as a very ordinary Andrew instead. Moo (aka Ewan) is called Moo because when Dougal was very young he moood at him and Dougal thought it was very funny. He continued mooooing at Dougal to make him laugh and the rest is history. Ewan finds everything funny and when he's laughing you can't help but laugh at silly things too. Quite often it's at my expense, in fact, come to think of it, it's usually at my expense but hey, it's good to be able to laugh at yourself.
Last thing on Tuesday afternoon the phone rang and it was the hospital to tell me that my consultant had booked me in for a CT scan at 8am on Thursday morning. Ok, that's exciting, I've never had one of those before. Three weeks ago I'd never even been in hospital before. The consultant has also mentioned that it's worth getting my brothers tested to see if they will be a bone marrow match. If this does turn out to be aplastic anaemia, a sibling bone marrow transplant may be the preferred treatment. They each have a 1 in 4 chance of being a match. Ewan is going to come to my scan with me and he can get tested at the same time.
The hospital told me that my actual scan was at 9am but I needed to be there an hour before, they didn't tell me why. While I was donning my very fetching blue hospital scrubs in preparation for the scan I heard the familiar sound of Moo's belly laugh in the waiting area. I came to see what the hilarity was, only to be presented with half a litre of barium solution and a plastic cup. "Don't worry, it's tutti frutti flavoured" the nurse said. I poured the gloopy stuff into the cup (by looks it really could have been our school PVA glue had I not know better). A sip later - "tutti frutti flavoured, my arse" I spluttered at Moo. "I don't know what kind of tutti frutti that nurse has tasted before, but I'm telling you this is most definitely NOT tutti frutti in my book". I've got half an hour to down the lot, whilst Moo sits in hysterics. I'll get my own back shortly when he's got to go and give blood.
The CT scanner is like a giant polo mint. Once you have an IV line put in your arm you're pretty much ready to go and get scanned. I go into the CT room and there are two very nice nurses there explaining what's going to happen. They explain the bed will move backwards and forwards several times through the scanner. A voice will tell me when to hold my breath and when to breath again. Oh lord, this is not good, I can't even hold my breath for 10 seconds (I know this because Dougal and I had a competition the other day to see who could hold it the longest, I lost), I'll just have to do my best. Uh oh, I'm also desperate for a wee, like cross your legs desperate but they wont let me go before the scan. Holding your breath and really needing the loo are not a good combination. At this point the nurse then explains that they are going to attach my IV line to a machine which will at some point inject warm dye into me. What!!! You're going to put more fluids into me, this nurse has obviously never had children and does not realise the capabilities of a woman's bladder that has gone through the trauma of childbirth! (sorry to the men who are reading this, but it's a fact!). She then proceeds to tell me not to worry if I feel a warm sensation in the crotch region, it's quite a common sensation when they inject the dye. OMG, you've got to be kidding.
"Would you like to lie down now Miss McMaster" the nurse says directing me to the giant polo's bed.
"No I bloody well would not, I want to go the loo before I pee my pants" is what I want to say but is not what comes out my mouth. "Sure" is all I can muster.
The nurses leaves the room and I lie there, waiting. Sure enough the bed zips backwards and forwards, I hold my breath as instructed, turn purple and breath. Phew, just long enough. A couple of minutes later and a voice tells me the dye is on it's way, cue the hot crotch sensations. I'm mortified, OMG I'm 39 and I've peed my pants...I think. Please let this be over. A few minutes later and we're done. The nurse comes in and unhooks my IV line so I can move again. "You can stand up now Miss McMaster, you're all done". I don't move, I'm too scared to look. I very carefully shuffle to the edge of the bed (taking with me the big blue bit of paper you lie on) and very tentatively stand up, looking behind me to see if there's a puddle.......no puddle, result!! The nurse gives me a very odd look. I tell her I was sure I'd had an accident...she smiles and reassures me that everyone thinks that. "Can you tell me where the loo is please, " I shout back at her as I rush out the door before I really do have an accident.
Last thing on Tuesday afternoon the phone rang and it was the hospital to tell me that my consultant had booked me in for a CT scan at 8am on Thursday morning. Ok, that's exciting, I've never had one of those before. Three weeks ago I'd never even been in hospital before. The consultant has also mentioned that it's worth getting my brothers tested to see if they will be a bone marrow match. If this does turn out to be aplastic anaemia, a sibling bone marrow transplant may be the preferred treatment. They each have a 1 in 4 chance of being a match. Ewan is going to come to my scan with me and he can get tested at the same time.
The hospital told me that my actual scan was at 9am but I needed to be there an hour before, they didn't tell me why. While I was donning my very fetching blue hospital scrubs in preparation for the scan I heard the familiar sound of Moo's belly laugh in the waiting area. I came to see what the hilarity was, only to be presented with half a litre of barium solution and a plastic cup. "Don't worry, it's tutti frutti flavoured" the nurse said. I poured the gloopy stuff into the cup (by looks it really could have been our school PVA glue had I not know better). A sip later - "tutti frutti flavoured, my arse" I spluttered at Moo. "I don't know what kind of tutti frutti that nurse has tasted before, but I'm telling you this is most definitely NOT tutti frutti in my book". I've got half an hour to down the lot, whilst Moo sits in hysterics. I'll get my own back shortly when he's got to go and give blood.
The CT scanner is like a giant polo mint. Once you have an IV line put in your arm you're pretty much ready to go and get scanned. I go into the CT room and there are two very nice nurses there explaining what's going to happen. They explain the bed will move backwards and forwards several times through the scanner. A voice will tell me when to hold my breath and when to breath again. Oh lord, this is not good, I can't even hold my breath for 10 seconds (I know this because Dougal and I had a competition the other day to see who could hold it the longest, I lost), I'll just have to do my best. Uh oh, I'm also desperate for a wee, like cross your legs desperate but they wont let me go before the scan. Holding your breath and really needing the loo are not a good combination. At this point the nurse then explains that they are going to attach my IV line to a machine which will at some point inject warm dye into me. What!!! You're going to put more fluids into me, this nurse has obviously never had children and does not realise the capabilities of a woman's bladder that has gone through the trauma of childbirth! (sorry to the men who are reading this, but it's a fact!). She then proceeds to tell me not to worry if I feel a warm sensation in the crotch region, it's quite a common sensation when they inject the dye. OMG, you've got to be kidding.
"Would you like to lie down now Miss McMaster" the nurse says directing me to the giant polo's bed.
"No I bloody well would not, I want to go the loo before I pee my pants" is what I want to say but is not what comes out my mouth. "Sure" is all I can muster.
The nurses leaves the room and I lie there, waiting. Sure enough the bed zips backwards and forwards, I hold my breath as instructed, turn purple and breath. Phew, just long enough. A couple of minutes later and a voice tells me the dye is on it's way, cue the hot crotch sensations. I'm mortified, OMG I'm 39 and I've peed my pants...I think. Please let this be over. A few minutes later and we're done. The nurse comes in and unhooks my IV line so I can move again. "You can stand up now Miss McMaster, you're all done". I don't move, I'm too scared to look. I very carefully shuffle to the edge of the bed (taking with me the big blue bit of paper you lie on) and very tentatively stand up, looking behind me to see if there's a puddle.......no puddle, result!! The nurse gives me a very odd look. I tell her I was sure I'd had an accident...she smiles and reassures me that everyone thinks that. "Can you tell me where the loo is please, " I shout back at her as I rush out the door before I really do have an accident.
5. The lucky red bag
12th March
Monday
Two weeks can be a very short amount of time. If you've only two weeks to study for exams that's not long. If you need to lose a few inches to fit in your fav. jeans two weeks isn't long enough. If you're on a mega holiday two weeks whizzes by at warp speed. When you're waiting for test results to find out what's wrong with your wonky bonemarrow two weeks is an eternity.
I spent those two weeks doing, let me think, to be honest I really can't remember. I was in a state of disbelief for most of it, sure they'd made a mistake and as far as I was concerned when I went back they were going to tell me just as much. I moped around, forgetting everything anyone said to me and generally being a zombie.
One thing I did get to do which was a novelty for me was the school run. I wasn't allowed to work because my white cell count was low and I was susceptible to infections. This was a very bizarre situation as usually I was the teacher the children were being delivered to each day. Instead of donning my smart clothes for the classroom ( I always wore a dress or skirt to work) for some unknown reason I felt the need to revert to becoming a slummy mummy in my tracky bums ( not any tracky bums, Nike fluids I'll have you know) and a hoodie. I can't explain the need to wear these other than the fact that I couldn't summon up the energy to pick something else out the wardrobe and they were comfy, they didn't rub on my lower back where they'd taken the bone marrow sample from.
I also seemed to be getting a bit superstitious. So far, each time I'd visited the hospital I'd taken the red overnight bag with me (containing the toothpaste and shampoo I'd bought on the car crash trip) so I was prepared to stay if necessary. Each time I'd taken the bag, they'd let me come home again. That's it, by my reasoning the thing that's keeping me out of hospital is the red overnight bag. As long as it's packed and I take it with me on each visit I wont have to stay. So far so good. There's a females logic for you.
Two weeks eventually was up and Andy was coming to the hospital with me. It was time for blood transfusion number 2 and the biopsy results, woohoo.
Two bags of blood, 5 hours later, a chat with the doc and we were still none the wiser. Yes, you read that correctly, we still didn't know what was wrong. It sounds like I'm stringing you along, I'm not and there's nobody more disappointed, cross or upset than me.
The marrow results weren't what they were expecting to see. What they were expecting was either to see cancer cells, or empty bone marrow. They didn't see cancer cells, but they also didn't see empty bone marrow which would have indicated aplastic anaemia. The doctor explained that although there were no cancer cells there yet, they could appear and it could happen quickly. She also said it was unusual to have one part of the bone marrow completely empty, but have another part with some healthy cells in it. She suggested the best way forward was to wait a fortnight, do another bone marrow biopsy then look at the results of that. Can I just point out that it takes two weeks to process the biopsy so it would be another month to actually find out anything. If I thought the last two weeks was along time, try doubling it.
Right, enough moping around. There's nothing I can do about it so time to get off my bahookie and make use of all this free time I have. I need to find a project to keep my busy and Andy...please can I have a craft room?
Monday
Two weeks can be a very short amount of time. If you've only two weeks to study for exams that's not long. If you need to lose a few inches to fit in your fav. jeans two weeks isn't long enough. If you're on a mega holiday two weeks whizzes by at warp speed. When you're waiting for test results to find out what's wrong with your wonky bonemarrow two weeks is an eternity.
I spent those two weeks doing, let me think, to be honest I really can't remember. I was in a state of disbelief for most of it, sure they'd made a mistake and as far as I was concerned when I went back they were going to tell me just as much. I moped around, forgetting everything anyone said to me and generally being a zombie.
One thing I did get to do which was a novelty for me was the school run. I wasn't allowed to work because my white cell count was low and I was susceptible to infections. This was a very bizarre situation as usually I was the teacher the children were being delivered to each day. Instead of donning my smart clothes for the classroom ( I always wore a dress or skirt to work) for some unknown reason I felt the need to revert to becoming a slummy mummy in my tracky bums ( not any tracky bums, Nike fluids I'll have you know) and a hoodie. I can't explain the need to wear these other than the fact that I couldn't summon up the energy to pick something else out the wardrobe and they were comfy, they didn't rub on my lower back where they'd taken the bone marrow sample from.
I also seemed to be getting a bit superstitious. So far, each time I'd visited the hospital I'd taken the red overnight bag with me (containing the toothpaste and shampoo I'd bought on the car crash trip) so I was prepared to stay if necessary. Each time I'd taken the bag, they'd let me come home again. That's it, by my reasoning the thing that's keeping me out of hospital is the red overnight bag. As long as it's packed and I take it with me on each visit I wont have to stay. So far so good. There's a females logic for you.
Two weeks eventually was up and Andy was coming to the hospital with me. It was time for blood transfusion number 2 and the biopsy results, woohoo.
Two bags of blood, 5 hours later, a chat with the doc and we were still none the wiser. Yes, you read that correctly, we still didn't know what was wrong. It sounds like I'm stringing you along, I'm not and there's nobody more disappointed, cross or upset than me.
The marrow results weren't what they were expecting to see. What they were expecting was either to see cancer cells, or empty bone marrow. They didn't see cancer cells, but they also didn't see empty bone marrow which would have indicated aplastic anaemia. The doctor explained that although there were no cancer cells there yet, they could appear and it could happen quickly. She also said it was unusual to have one part of the bone marrow completely empty, but have another part with some healthy cells in it. She suggested the best way forward was to wait a fortnight, do another bone marrow biopsy then look at the results of that. Can I just point out that it takes two weeks to process the biopsy so it would be another month to actually find out anything. If I thought the last two weeks was along time, try doubling it.
Right, enough moping around. There's nothing I can do about it so time to get off my bahookie and make use of all this free time I have. I need to find a project to keep my busy and Andy...please can I have a craft room?
Saturday, 23 June 2012
4. We've struck oil
27 February
Monday
It's now one week since my first visit to the GP. This morning Uncle Charles has been my knight in shining armour and come to take me to hospital for my bone marrow biopsy as Andy has a sick bug. I'm not sure what to expect, with a bit of luck they'll knock me out and I'll know nothing about it. My first dilemma of the day is what to wear? I know they are going to be shoving a bloody great hollow needle in my back somewhere low down and it's going to hurt afterwards. Trousers I think are a no no, the waistband might rub after so maybe a skirt perhaps? Not sure, maybe the waist on that will rub? Safe option - stretchy dress and of course my lucky pants.
The whole thing wasn't actually too bad. I had to lie down on the bed and hug my knees. The nurse put a line in my arm and slowly injected a little bit of sedative. I did notice that she only put half the vile of sedative in. I was aware of a bit of pressure on my back, but was asleep for most of it, or so I thought. The actual part they take the bone marrow from is a boney ridge on the back of your pelvis. You wouldn't know it's there, to you and me it's the top of your buttock. I woke up, job done. A bit sore but not too bad.
Later on the nurse told me a funny thing. When the doctor had put the needle in my back, quite a lot of liquid squirted out, at this point the doctor said "we've struck oil". I obviously wasn't quite as asleep as they thought and piped up "what, I've got a boil?". I don't remember this but was glad I had been able to amuse them, even in a state of semi consciousness.
I was very nervous, I knew the consultant was going to have a quick look at the marrow through the microscope before it was sent off for two weeks of processing. Any minute now she might tell me I had leukemia or aplastic anaemia. My consultant appeared and I held my breath. Uncle Charles's timing was impeccable and he appeared just in time to hear the consultants findings.
This is it, this is it.........no it's not. The quick look had been inconclusive. Although she could see no cancer cells (which was good), she couldn't rule anything out so we would have to wait two weeks for the marrow to be processed. Oh man, two more weeks of not knowing.
Monday
It's now one week since my first visit to the GP. This morning Uncle Charles has been my knight in shining armour and come to take me to hospital for my bone marrow biopsy as Andy has a sick bug. I'm not sure what to expect, with a bit of luck they'll knock me out and I'll know nothing about it. My first dilemma of the day is what to wear? I know they are going to be shoving a bloody great hollow needle in my back somewhere low down and it's going to hurt afterwards. Trousers I think are a no no, the waistband might rub after so maybe a skirt perhaps? Not sure, maybe the waist on that will rub? Safe option - stretchy dress and of course my lucky pants.
The whole thing wasn't actually too bad. I had to lie down on the bed and hug my knees. The nurse put a line in my arm and slowly injected a little bit of sedative. I did notice that she only put half the vile of sedative in. I was aware of a bit of pressure on my back, but was asleep for most of it, or so I thought. The actual part they take the bone marrow from is a boney ridge on the back of your pelvis. You wouldn't know it's there, to you and me it's the top of your buttock. I woke up, job done. A bit sore but not too bad.
Later on the nurse told me a funny thing. When the doctor had put the needle in my back, quite a lot of liquid squirted out, at this point the doctor said "we've struck oil". I obviously wasn't quite as asleep as they thought and piped up "what, I've got a boil?". I don't remember this but was glad I had been able to amuse them, even in a state of semi consciousness.
I was very nervous, I knew the consultant was going to have a quick look at the marrow through the microscope before it was sent off for two weeks of processing. Any minute now she might tell me I had leukemia or aplastic anaemia. My consultant appeared and I held my breath. Uncle Charles's timing was impeccable and he appeared just in time to hear the consultants findings.
This is it, this is it.........no it's not. The quick look had been inconclusive. Although she could see no cancer cells (which was good), she couldn't rule anything out so we would have to wait two weeks for the marrow to be processed. Oh man, two more weeks of not knowing.
3. To google or not to google
25 & 26 February
Saturday & Sunday
"Don't look on the internet". Andy's wise words. I decide they are probably worth considering on this occassion. On one hand, I want to know what the internet has to say about leukemia and aplastic anemia, on the other hand, if I read both of them that's two things to worry about instead of one. The problem is that I don't know which one of them is more likely. The doc said leukemia is more likely than Aplastic anemia, but without a bone marrow biopsy we wont know for sure which one it is. The very little knowledge I have of leukemia is enough to know that it's a very scarey illness. Aplastic anemia I have never heard of. Decision made, if I'm going to google something it's going to be aplastic anemia, but I'm not suppose to be looking on the internet. My mission is to steer clear of the computer then I don't have to look anything up.
The computer sits in our breakfast room, on the table. I spend alot of time in the breakfast room. It has the comfiest chair in the house, a telly and opens out into the kitchen. It's going to be difficult to avoid the computer but I'm going to try my very best. The thing is that today, the computer seems to be beckoning me over, enticing me with little whispers. This is not altogether unusual, it's just that it's usually the sweetie cupboard that has the ability to do that, come to think of it the biscuit box does it too.
I lasted all of about 2 hours, then spent the rest of the day on the internet finding out everything I could about both illnesses. Willpower isn't one of my strong points. Was this wise, probably not but atleast I felt a little more informed, and now alot more scared. But that's ok because I only had to wait one more day til the bone marrow biopsy and my consultant said that she would be able to look at it quickly and may be able to get an initial idea what's wrong.
It's Sunday evening, only 12 hours to go until the next hospital visit for the bone marrow biopsy. I'm going to be given light sedation for the biospy so I'm not allowed to drive myself there, Andy is going to take me. Well, Andy was going to take me, until he decided to get a vomiting bug. Lucky for me Uncle Charles came to my rescue.
Saturday & Sunday
"Don't look on the internet". Andy's wise words. I decide they are probably worth considering on this occassion. On one hand, I want to know what the internet has to say about leukemia and aplastic anemia, on the other hand, if I read both of them that's two things to worry about instead of one. The problem is that I don't know which one of them is more likely. The doc said leukemia is more likely than Aplastic anemia, but without a bone marrow biopsy we wont know for sure which one it is. The very little knowledge I have of leukemia is enough to know that it's a very scarey illness. Aplastic anemia I have never heard of. Decision made, if I'm going to google something it's going to be aplastic anemia, but I'm not suppose to be looking on the internet. My mission is to steer clear of the computer then I don't have to look anything up.
The computer sits in our breakfast room, on the table. I spend alot of time in the breakfast room. It has the comfiest chair in the house, a telly and opens out into the kitchen. It's going to be difficult to avoid the computer but I'm going to try my very best. The thing is that today, the computer seems to be beckoning me over, enticing me with little whispers. This is not altogether unusual, it's just that it's usually the sweetie cupboard that has the ability to do that, come to think of it the biscuit box does it too.
I lasted all of about 2 hours, then spent the rest of the day on the internet finding out everything I could about both illnesses. Willpower isn't one of my strong points. Was this wise, probably not but atleast I felt a little more informed, and now alot more scared. But that's ok because I only had to wait one more day til the bone marrow biopsy and my consultant said that she would be able to look at it quickly and may be able to get an initial idea what's wrong.
It's Sunday evening, only 12 hours to go until the next hospital visit for the bone marrow biopsy. I'm going to be given light sedation for the biospy so I'm not allowed to drive myself there, Andy is going to take me. Well, Andy was going to take me, until he decided to get a vomiting bug. Lucky for me Uncle Charles came to my rescue.
2. The morning after the day before
24 February
Friday Morning
I wake up, look across the room to see the red hospital bag sitting by the door where I left it last night and I sigh, it wasn't all just a bad dream, well that's just pants! I pull the covers over my head and in my little duvet bubble I contemplate life. How many things are there that I still want to do & what have I done so far? Whilst occasionally coming up for air so as not to suffocate (that would be ironic) I come to the following conclusion:
I think I'm the luckiest person in the world.
Everything I have wanted to do in life so far I have done. In no particular order the list goes something like this:
Get eyelashes for my fiat 500 Ridiculous I know, but they make me smile alot
Travel to Australia My favourite place in the world, second only to the west coast of Scotland and Aberdeen
Go to uni I've done that 3 times now, BS, MSc, PGCE. Andy just told me I'm known as Diana Ross offshore. Why? Because she was in the 3 degrees, hahaha, that's funny.
Come to think of it the very fact I've got a BSc and an MSc is pretty lucky too, infact it's really a miracle considering I managed to fail my O Grade Chemistry, and didn't do any
science highers or A levels.
Have leather trousers Cringe, it was a very very very long time ago.
Drive a convertible How lucky am I, Andy even went and bought one.
Have a family I have the best family in the whole wide world.
Do a parachute jump I did indeed & loved every minute of it, except landing in the big pile of sheep poo. Steering was a problem.
Drive a rally car I spent a year rally driving and navigating. Even took part in the Scottish rally championships. I was mainly the navigator but was rewarded with a wee trophy from Stonehaven Rally Club for my skills. The fact that there were only 4 people in the Novice Navigator class doesn't count, a trophy's a trophy!!
Learn to bake I love baking, I love eating my baking!
Be a size 12 With breathing in, wearing Bridget Jones holdy-innie cast iron underwear I think I managed this for a few weeks.
Be an offshore engineer As I said earlier, bit of a miracle really but I did it :-)
Be a teacher I always wanted to be a teacher and have at long last done it.
Be really good at something Erm, let me think, .....eating chocolate. Tick
Be fit Tricky one, I was, now I'm not, but will be again. I'd better make a huge effort when my bonemarrow is fixed, I've just convinced Andy to join the golf club so I can go to the spa!
Pass motorbike test Mission accomplished first time round.
Have a motorbike I don't have one now as I crashed it, but that's super lucky, how many people right-off a bike and walk away unhurt. Worst thing about that was that I managed to freeze my ankle solid by putting an ice pack directly on it, oops. Sarah, sorry for ramming you up the bottom that time with my SV650. Happily you were relatively unscathed too.(No, that's not something rude for all you smutty readers out there!!! SV650 was my bike.)
Whilst I'm speaking about accidents, there's another reason I'm super duper lucky, I've been knocked down by cars twice. Not when I was a child, both times when I was grown up, at Uni and suppose to know how to cross a road! Once I ran across a bus lane and didn't see a car zipping down it so I did a superman across the bonnet. I wasn't really hurt and more importantly my hair remained fully intact as I had just been at the hairdressers and was on my way to a ball :-) Second time was the summer I left school, I saw a friend across the road - Mr Gault (it was Queen Street in Glasgow) and I just ran out to see them. A blooming golf was coming down the street, it hit me, it rained shopping bags everywhere and I went splat. Again, I was very lucky and didn't really gut hurt. Don't get me wrong, it does hurt when a large lump of metal with wheels hits you, but nothing was broken, except the wing mirror of the golf. The driver got out his car, picked up his wing mirror and the bugger drove off. A very nice lady from the shoe shop came out, helped me up and gave me a glass of water. Now most people wouldn't think this sounds like a very unlucky run of events, to me it's nothing short of a miracle, how on earth I've reached 39 and never broken a bone is beyond me. I'm a very lucky girl.
There's loads of other things, but those were the ones that came to mind.
So what's left to do? The most important thing any mum can do, be there for their children. That's it, quite simply. Whatever is wrong, I want to see Dougal grow up & I want to grow old with Andy.
Time to get up, the question is will I manage to stay away from google today? Should I look up things the doc mentioned? Google can be your best friend, it can also be your worst enemy.
Friday Morning
I wake up, look across the room to see the red hospital bag sitting by the door where I left it last night and I sigh, it wasn't all just a bad dream, well that's just pants! I pull the covers over my head and in my little duvet bubble I contemplate life. How many things are there that I still want to do & what have I done so far? Whilst occasionally coming up for air so as not to suffocate (that would be ironic) I come to the following conclusion:
I think I'm the luckiest person in the world.
Everything I have wanted to do in life so far I have done. In no particular order the list goes something like this:
Get eyelashes for my fiat 500 Ridiculous I know, but they make me smile alot
Travel to Australia My favourite place in the world, second only to the west coast of Scotland and Aberdeen
Go to uni I've done that 3 times now, BS, MSc, PGCE. Andy just told me I'm known as Diana Ross offshore. Why? Because she was in the 3 degrees, hahaha, that's funny.
Come to think of it the very fact I've got a BSc and an MSc is pretty lucky too, infact it's really a miracle considering I managed to fail my O Grade Chemistry, and didn't do any
science highers or A levels.
Have leather trousers Cringe, it was a very very very long time ago.
Drive a convertible How lucky am I, Andy even went and bought one.
Have a family I have the best family in the whole wide world.
Do a parachute jump I did indeed & loved every minute of it, except landing in the big pile of sheep poo. Steering was a problem.
Drive a rally car I spent a year rally driving and navigating. Even took part in the Scottish rally championships. I was mainly the navigator but was rewarded with a wee trophy from Stonehaven Rally Club for my skills. The fact that there were only 4 people in the Novice Navigator class doesn't count, a trophy's a trophy!!
Learn to bake I love baking, I love eating my baking!
Be a size 12 With breathing in, wearing Bridget Jones holdy-innie cast iron underwear I think I managed this for a few weeks.
Be an offshore engineer As I said earlier, bit of a miracle really but I did it :-)
Be a teacher I always wanted to be a teacher and have at long last done it.
Be really good at something Erm, let me think, .....eating chocolate. Tick
Be fit Tricky one, I was, now I'm not, but will be again. I'd better make a huge effort when my bonemarrow is fixed, I've just convinced Andy to join the golf club so I can go to the spa!
Pass motorbike test Mission accomplished first time round.
Have a motorbike I don't have one now as I crashed it, but that's super lucky, how many people right-off a bike and walk away unhurt. Worst thing about that was that I managed to freeze my ankle solid by putting an ice pack directly on it, oops. Sarah, sorry for ramming you up the bottom that time with my SV650. Happily you were relatively unscathed too.(No, that's not something rude for all you smutty readers out there!!! SV650 was my bike.)
Whilst I'm speaking about accidents, there's another reason I'm super duper lucky, I've been knocked down by cars twice. Not when I was a child, both times when I was grown up, at Uni and suppose to know how to cross a road! Once I ran across a bus lane and didn't see a car zipping down it so I did a superman across the bonnet. I wasn't really hurt and more importantly my hair remained fully intact as I had just been at the hairdressers and was on my way to a ball :-) Second time was the summer I left school, I saw a friend across the road - Mr Gault (it was Queen Street in Glasgow) and I just ran out to see them. A blooming golf was coming down the street, it hit me, it rained shopping bags everywhere and I went splat. Again, I was very lucky and didn't really gut hurt. Don't get me wrong, it does hurt when a large lump of metal with wheels hits you, but nothing was broken, except the wing mirror of the golf. The driver got out his car, picked up his wing mirror and the bugger drove off. A very nice lady from the shoe shop came out, helped me up and gave me a glass of water. Now most people wouldn't think this sounds like a very unlucky run of events, to me it's nothing short of a miracle, how on earth I've reached 39 and never broken a bone is beyond me. I'm a very lucky girl.
There's loads of other things, but those were the ones that came to mind.
So what's left to do? The most important thing any mum can do, be there for their children. That's it, quite simply. Whatever is wrong, I want to see Dougal grow up & I want to grow old with Andy.
Time to get up, the question is will I manage to stay away from google today? Should I look up things the doc mentioned? Google can be your best friend, it can also be your worst enemy.
Friday, 22 June 2012
1. Topsy Turvey
Hi, I'm writing a blog about me and my wonky bonemarrow. I know there are lots of typos in this, please excuse them, the grammar isn't the best either but I'm just trying to get this together quickly before I go into hospital, and give you an idea what I've been up to.
Who'd have thought that little old me would be sitting here writing about such things. I use the term "old" loosely, I'm not that old really, I'm 39. When you're 10 years old that's absolutely ancient but when you actually reach 39 yourself it's not even middle-aged as far as I'm concerned! Anyway, rewind 4 months and that's when my world got turned upside down.
February 2012
I work full time and I'm a mum so I thought nothing about feeling a bit tired. I can be pretty clumsy too so didn't think too much about the bruises that seemed to be appearing on my legs and arms. The first thing that really made me think something was wrong was when I was at my circuit training class in the park one evening. Things that I'd been able to do easily a few weeks before, suddenly became very difficult. Running, push ups, skipping and boxing made my heart feel like it was going to jump out my chest, I just couldn't do them but I didn't understand why when I'd been able to with ease a couple of weeks earlier. My lower back had been aching for a couple of months, I put that down to sitting on the small chairs at school (I teach 5 year olds and spend alot of time bending down) so I had a trip to the osteopath. I'd been to the osteo before, but within a couple of hours of my visit my whole lower back had bruised, and not just a little bruise, every bit he had manipulated and massaged had turned into a big black bruise. I got a big fright and alarm bells really started to ring. My gums had also become very sore and were covered in tiny little cuts all over. The final straw was when I cut myself and it just didn't stop bleeding. Enough was enough and it was time to make a doctors appointment.
To cut a long story short I went and saw my GP on a Monday evening. He asked my symptoms:
I'm tired.
I have bruises.
I'm out of puff.
My back hurts.
My gums hurt.
I can't get a teeny weeny cut to stop bleeding.
I felt like a real moaning minnie, I mean individually, none of these are really a big deal but put them all together, little did I know. I went back on Tuesday morning to have some blood samples taken and the GP's nurse said I'd probably hear from them in a week or so as there was a big back log at the hospital so I trotted off to work and thought nothing more about it. When I got home that evening Andy and I passed in the doorway - he works offshore and was flying back to work that evening. I fleetingly said goodbye to him, mentioned that I didn't feel great and was going to go straight to bed once I'd fed Dougal. I really didn't feel well, I couldn't stop shaking and assumed I was getting flu. An hour later the phone rang, it was the out of hours doctor who told me that the hospital had been in touch and that there was something very wrong with my blood. " Erm, ok. What do you mean? I'm not suppose to hear from them for a week ?" I said. The doctor just kept telling me that I was very ill and I would need to go to hospital. I just didn't get it. Eventually he explained about the blood test results and told me my white cell count, neutrophil count, & haemoglobin levels were all very low. He was on the phone for about 20 minutes and by the end of the call had told me to pack my bag and prepare for being in hospital "for quite some time". When I put the phone down I was distraught, until Dougal brought me back down to earth with a thump and a "mummy, I'm really hungry, please can I have something else to eat". I dried my eyes and summoned the energy to go downstairs, bung a hot dog in the microwave, then go back to bed to try and warm up and stop shivering.
All I wanted to do was to speak to Andy before he got on the plane but he'd switched his phone off just before he boarded, so I then had an hour and a half to wait to speak to him again. I just lay in bed and cried, I phoned my mum and my brother, and left desperate messages for Andy to call me as soon as he switched his phone on again. Two hours later he called and was (as ever) a total rock, calm, reassuring, and ready to drop everything to come straight home. The only problem was that he had now missed the last flight back down to London so I'd have to wait until the morning til he could get home again.That was the longest night ever. I had no incling about what could be wrong, and the doctors words of "you're seriously ill and you're going to be in hospital for quite some time" kept ringing in my head.
The next morning Andy was home by 9am and took control of everything while I fell apart. My doctor phoned to say we were to go to St Richards hospital at 10am to see a consultant and that it would be in the Fernhurst Centre. Andy left me to pack my bag while he took Dougal to school. I flung things in willy-nilly, not really able to think about what I would need. I did manage to convince myself that I would need some new toothpaste and shampoo so with the supermarket being two minutes round the corner I jumped in my car. A few minutes later, mission accomplished, toothpaste in hand I got in the car to come home. There's one set of traffic lights to negotiate on the two minute journey. Why did I have to get stuck behind the only person in the world who slams their brakes on at a green traffic light? I drove straight into the back of them. It wasn't even 8am yet and already the day was a nightmare. I swapped details and headed home in floods of tears again. Andy came home from the school run to find me sitting sobbing in a heap on the floor, muttering something about crashing the car. He scooped me up, gave me a hug and as always, told me not to worry.
We grabbed the bags and headed for the hospital. When we got there I sat down and looked around, trying to understand why on earth they had sent me here. We were surrounded my Macmillan cancer care posters and leaflets, there was a person sitting in the special cancer counselling centre and several ill, hairless looking people. I kept wondering why I was in this part of the hospital? We were called very quickly and sat down with the doctor. She was very to the point and said my blood counts were low and my bone marrow wasn't working. She explained that your bone marrow makes your blood and there was something wrong with mine which would be one of two things - either leukaemia or something pretty rare called aplastic anaemia. At this point I went into a daze and stopped taking in any information what so ever. Thank goodness Andy was there and was his level headed self and able to ask a million and one questions. We spent the whole day at the hospital. A specialist nurse spoke to us once we had absorbed what the doctor had said. I just sat again, in shock and Andy listened and questioned. If a had a pound for every time I said to Andy "what did she say" I'd be able to by myself an ipad! I just couldn't take in any information, I was sure they had made a mistake.
The rest of the day consisted of being told I needed a blood transfusion and a platelet transfusion. I didn't have a clue what that would involve but the hospital were great at explaining everything. I don't think I'd ever seen a bag of blood before and I'd definitely never seen a bag of platelets. The transfusions took ages, 2 hours per bag and I think I had 3 bags. They have to drip it in slowly so your heart doesn't go into shock, the platelets were much quicker, only about 15 mins per bag. The platelets had to get couriered all the way from London which is a couple of hours away. I remember asking the nurse if a bag of platelets looked like a bag of blood. The nurse smiled, "oh, no, they look nothing like that" but she wouldn't elaborate. I guessed it was going to look like a bag of clearish liquid, the nurse just smiled and told me that she would let me make my own conclusions. Hmm, it was the first time I'd smiled all day. When the platelets arrived I could see why she hadn't said anything, the only way to describe it was that it looked like a bag of wee, and the kind of wee that you produce when you really haven't been drinking enough water - yuck!! Andy left mid afternoon to get Dougal from school and explained to Dougal what was happening. I was hoping the transfusion would be finished by the time they got back to the hospital, but there was still about another 15 mins to go. Dougal came in the room, looked at the bag dripping into my arm and was very unsure about the whole thing, he really didn't like it. I noticed a wheelchair out in the corridor so sent him and Andy out to whizz about in it while the dripping finished. That was much more fun and it was nice to hear giggles for a change that day instead of sobs.
Anyway, it all helped me feel a bit better and by 8.30pm I was allowed to go home, on the proviso that I wouldn't do much and had been given a lecture about being neutropenic. If your neutropenic it means that your immune system is very low which makes you more susceptible to bugs. They gave me a special card to carry that told me what symptoms to watch out for and it had emergency phone numbers to contact should I get any symptoms. I got my purse out to fit the card in and thought you've got to be kidding, there's no way I can fit another card in this purse, something is going to have to make way for it. After much deliberation the monsoon card got demoted and made way for my neutropenic card.
Well that was day 1. The doctor had mentioned something about a bone marrow biopsy, I hadn't a scooby doo what that was, but knew that she said there wasn't much point doing it on a Thursday or Friday as it would just sit around over the weekend, I may as well wait until Monday for that pleasure. I then had 4 days to wait for hospital visit number 2, and to google the words leukaemia and aplastic anaemia.....
Who'd have thought that little old me would be sitting here writing about such things. I use the term "old" loosely, I'm not that old really, I'm 39. When you're 10 years old that's absolutely ancient but when you actually reach 39 yourself it's not even middle-aged as far as I'm concerned! Anyway, rewind 4 months and that's when my world got turned upside down.
February 2012
I work full time and I'm a mum so I thought nothing about feeling a bit tired. I can be pretty clumsy too so didn't think too much about the bruises that seemed to be appearing on my legs and arms. The first thing that really made me think something was wrong was when I was at my circuit training class in the park one evening. Things that I'd been able to do easily a few weeks before, suddenly became very difficult. Running, push ups, skipping and boxing made my heart feel like it was going to jump out my chest, I just couldn't do them but I didn't understand why when I'd been able to with ease a couple of weeks earlier. My lower back had been aching for a couple of months, I put that down to sitting on the small chairs at school (I teach 5 year olds and spend alot of time bending down) so I had a trip to the osteopath. I'd been to the osteo before, but within a couple of hours of my visit my whole lower back had bruised, and not just a little bruise, every bit he had manipulated and massaged had turned into a big black bruise. I got a big fright and alarm bells really started to ring. My gums had also become very sore and were covered in tiny little cuts all over. The final straw was when I cut myself and it just didn't stop bleeding. Enough was enough and it was time to make a doctors appointment.
To cut a long story short I went and saw my GP on a Monday evening. He asked my symptoms:
I'm tired.
I have bruises.
I'm out of puff.
My back hurts.
My gums hurt.
I can't get a teeny weeny cut to stop bleeding.
I felt like a real moaning minnie, I mean individually, none of these are really a big deal but put them all together, little did I know. I went back on Tuesday morning to have some blood samples taken and the GP's nurse said I'd probably hear from them in a week or so as there was a big back log at the hospital so I trotted off to work and thought nothing more about it. When I got home that evening Andy and I passed in the doorway - he works offshore and was flying back to work that evening. I fleetingly said goodbye to him, mentioned that I didn't feel great and was going to go straight to bed once I'd fed Dougal. I really didn't feel well, I couldn't stop shaking and assumed I was getting flu. An hour later the phone rang, it was the out of hours doctor who told me that the hospital had been in touch and that there was something very wrong with my blood. " Erm, ok. What do you mean? I'm not suppose to hear from them for a week ?" I said. The doctor just kept telling me that I was very ill and I would need to go to hospital. I just didn't get it. Eventually he explained about the blood test results and told me my white cell count, neutrophil count, & haemoglobin levels were all very low. He was on the phone for about 20 minutes and by the end of the call had told me to pack my bag and prepare for being in hospital "for quite some time". When I put the phone down I was distraught, until Dougal brought me back down to earth with a thump and a "mummy, I'm really hungry, please can I have something else to eat". I dried my eyes and summoned the energy to go downstairs, bung a hot dog in the microwave, then go back to bed to try and warm up and stop shivering.
All I wanted to do was to speak to Andy before he got on the plane but he'd switched his phone off just before he boarded, so I then had an hour and a half to wait to speak to him again. I just lay in bed and cried, I phoned my mum and my brother, and left desperate messages for Andy to call me as soon as he switched his phone on again. Two hours later he called and was (as ever) a total rock, calm, reassuring, and ready to drop everything to come straight home. The only problem was that he had now missed the last flight back down to London so I'd have to wait until the morning til he could get home again.That was the longest night ever. I had no incling about what could be wrong, and the doctors words of "you're seriously ill and you're going to be in hospital for quite some time" kept ringing in my head.
The next morning Andy was home by 9am and took control of everything while I fell apart. My doctor phoned to say we were to go to St Richards hospital at 10am to see a consultant and that it would be in the Fernhurst Centre. Andy left me to pack my bag while he took Dougal to school. I flung things in willy-nilly, not really able to think about what I would need. I did manage to convince myself that I would need some new toothpaste and shampoo so with the supermarket being two minutes round the corner I jumped in my car. A few minutes later, mission accomplished, toothpaste in hand I got in the car to come home. There's one set of traffic lights to negotiate on the two minute journey. Why did I have to get stuck behind the only person in the world who slams their brakes on at a green traffic light? I drove straight into the back of them. It wasn't even 8am yet and already the day was a nightmare. I swapped details and headed home in floods of tears again. Andy came home from the school run to find me sitting sobbing in a heap on the floor, muttering something about crashing the car. He scooped me up, gave me a hug and as always, told me not to worry.
We grabbed the bags and headed for the hospital. When we got there I sat down and looked around, trying to understand why on earth they had sent me here. We were surrounded my Macmillan cancer care posters and leaflets, there was a person sitting in the special cancer counselling centre and several ill, hairless looking people. I kept wondering why I was in this part of the hospital? We were called very quickly and sat down with the doctor. She was very to the point and said my blood counts were low and my bone marrow wasn't working. She explained that your bone marrow makes your blood and there was something wrong with mine which would be one of two things - either leukaemia or something pretty rare called aplastic anaemia. At this point I went into a daze and stopped taking in any information what so ever. Thank goodness Andy was there and was his level headed self and able to ask a million and one questions. We spent the whole day at the hospital. A specialist nurse spoke to us once we had absorbed what the doctor had said. I just sat again, in shock and Andy listened and questioned. If a had a pound for every time I said to Andy "what did she say" I'd be able to by myself an ipad! I just couldn't take in any information, I was sure they had made a mistake.
The rest of the day consisted of being told I needed a blood transfusion and a platelet transfusion. I didn't have a clue what that would involve but the hospital were great at explaining everything. I don't think I'd ever seen a bag of blood before and I'd definitely never seen a bag of platelets. The transfusions took ages, 2 hours per bag and I think I had 3 bags. They have to drip it in slowly so your heart doesn't go into shock, the platelets were much quicker, only about 15 mins per bag. The platelets had to get couriered all the way from London which is a couple of hours away. I remember asking the nurse if a bag of platelets looked like a bag of blood. The nurse smiled, "oh, no, they look nothing like that" but she wouldn't elaborate. I guessed it was going to look like a bag of clearish liquid, the nurse just smiled and told me that she would let me make my own conclusions. Hmm, it was the first time I'd smiled all day. When the platelets arrived I could see why she hadn't said anything, the only way to describe it was that it looked like a bag of wee, and the kind of wee that you produce when you really haven't been drinking enough water - yuck!! Andy left mid afternoon to get Dougal from school and explained to Dougal what was happening. I was hoping the transfusion would be finished by the time they got back to the hospital, but there was still about another 15 mins to go. Dougal came in the room, looked at the bag dripping into my arm and was very unsure about the whole thing, he really didn't like it. I noticed a wheelchair out in the corridor so sent him and Andy out to whizz about in it while the dripping finished. That was much more fun and it was nice to hear giggles for a change that day instead of sobs.
Anyway, it all helped me feel a bit better and by 8.30pm I was allowed to go home, on the proviso that I wouldn't do much and had been given a lecture about being neutropenic. If your neutropenic it means that your immune system is very low which makes you more susceptible to bugs. They gave me a special card to carry that told me what symptoms to watch out for and it had emergency phone numbers to contact should I get any symptoms. I got my purse out to fit the card in and thought you've got to be kidding, there's no way I can fit another card in this purse, something is going to have to make way for it. After much deliberation the monsoon card got demoted and made way for my neutropenic card.
Well that was day 1. The doctor had mentioned something about a bone marrow biopsy, I hadn't a scooby doo what that was, but knew that she said there wasn't much point doing it on a Thursday or Friday as it would just sit around over the weekend, I may as well wait until Monday for that pleasure. I then had 4 days to wait for hospital visit number 2, and to google the words leukaemia and aplastic anaemia.....
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