Ok, so this one is going to be a little different.
This one is for those people who might be going into hospital for some sort of treatment, or just to spend an inordinate amount of time there.
I'll give you a run down of everything you might need, as well as everything you might not. We'll also talk about what you need to prepare yourself for.
So, here goes...
As a side note, steps one and two are top priority. All the others are in no particular order.
Step one: Mentally prepare yourself. If you know you're going in, that is. I had an inkling, on the 28th of June this year that I might be admitted to hospital, but only because my immunologist had briefly mentioned it when my blood test showed low WBC. I was stupid enough to mentally prepare myself for a few nights on the inside, and not consider the fact that I might be in for much longer. I was putting too much faith in the fact that I'd been in before and that it would all get sorted much quicker, forgetting that the NHS is as slow as anything.
In my opinion, this one is way up there at the top of the list. Just be open minded to the fact that you're going to be there, because there's nothing you can do about it. The idea of a national health service is a wonderful thing, and so to have access to it is just as good, even if it does have its major downfalls.
Step two: If you haven't got a mini suitcase, get one. Hell, even if you don't think you'll ever spend a lot of time as an inpatient, get one!
I bought one several years back just so i could visit my friend, Hannah, at university. Never looked back. I recommend Samsonite.
Back in 2012 I didn't use a suitcase, and ended up with about ten different bags full of various items by the time I came home. This is because almost everyone who visits brings you something; fresh clothes, food, books, etc, and eventually you end up with a room's worth of stuff and fifteen plastic bags to bring it all home in. Not to mention the sack of pills the pharmacy will give you.
Stupidly, this year, when I went into Maidstone, I took a canvas Wholefoods bag, with a few pairs of underwear, pajamas, toiletries and some electronics. I didn't think I'd be in long. I ended up in the same predicament as five years ago; when I came home I had too many bags.
It wasn't until I was admitted to Hammersmith over two weeks later that I decided to use my suitcase and even then, I didn't have enough room for everything I wanted to take with me. Maybe I should have used a big suitcase... too late now.
Step three: Your phone!
Now, I know for 99% of people this goes without saying, but your phone is your lifeline!
There's absolutely no way you can just have what you want in hospital. Not without asking someone to bring it in for you. You need a phone to do this.
You also need a phone just to chat to people, send texts, scroll through facebook. It'll definitely help to entertain you during those long wait times! (All the time!)
Use the free wifi, because your data will run out, and if you don't have unlimited minutes then keep an eye on how much you call people! In 2012 my contract only allowed 300 minutes a month; I went way over that! I came out of hospital to a £300 phone bill, which I had to pay off in instalments. Don't let this happen to you.
Step four: Food.
Now, if you're like me and are going into hospital with little to no appetite, then this step probably isn't for you right now. But it could be, so just bear it in mind.
If you're in a ward you won't have your own fridge, but there is usually one somewhere behind the scenes that can be used. The nurses will have access to this, and it's their choice as to whether or not you can use it, so all you can do is ask them, but from everything I've seen, they're pretty accommodating. A lot of the women in my ward this year were keeping various yoghurts and things in the hidden fridge and just asked the nurses to get them sometimes.
I never used this elusive fridge purely because I have a bit of a phobia of germs (which I think is totally understandable) and didn't like the idea of my food sitting around where I couldn't see it. Besides, I think I'd have had to label it and eat it within a certain amount of time because they have to get rid of it after a while. I don't know the specifics as every hospital is different.
Most side rooms will have their own fridge. Pembury didn't, and neither did John Day Ward at Maidstone, but Hammersmith did and so did the side rooms in Lord North. When I was first given a side room in 2012 this was the part I was most excited about, regardless of the fact that I didn't actually want to eat. But it was a place to keep my drinks cold, and the summer was definitely heating up. Just don't forget to take everything with you when you leave.
In Hammersmith, in 2012, once my appetite had started to return and I was craving real food again, I kept ready meals in my fridge. And cheese.
Every ward I've been in has something called a "Day Room". I think it's supposed to be like a common room, as there are chairs and books. Also, if you're in a shared ward they like it if you take your phone calls in there, not that anyone actually does... anyway, at Hammersmith the "Day Room" had a microwave, so I used to wander down the corridor with my ready meal, heat it up and bring it back to my room. It was usually spaghetti carbonara or something, but it was ten times better than anything I could have got from the "menu".
I don't remember Maidstone having an obvious microwave, but I'm sure there was one. I think they did the jacket potatoes in one on the ward somewhere, so it was local, in a sense.
Most wards, especially oncology wards, will let you eat what you want. They'll be really good about it, because they will just be happy that you're eating something. One of the patients told me that the nurses will even arrange a cooked breakfast for you, if you want. I never tested this theory, but it's probably true.
But yeah, the point is, take food with you. Take snacks, and cereal, and ready meals, and drinks; squash is a must, as more often than not the water is slightly too warm, so the squash flavour will help to hide this.
Just stock up!
Step five: Entertainment.
Do not even consider going in without a book or two. Or in my case, a kindle, which I bought when I went into hospital in 2012. Well, I paid for it, dad picked it up. Thanks, pops. I spent most of my time reading, which was actually quite nice this year because I hadn't done for a while.
Also, if you have one, an iPad/ tablet is good, but the wifi won't be strong enough to buffer any videos, so Netflix isn't really an option. I didn't really use my iPad, unless I was facetiming someone.
This year, I had my laptop. I never had access to one in 2012, but I'm glad I did this time. The only reason I asked my sister to bring it in, is because John Day didn't have a TV, and I was bored doing nothing. So, my sister gathered together some DVDs for me, with the laptop, and brought them in. I rewatched seasons 1 and 2 of Breaking Bad, which was nice.
Step six: Clothes.
The clothes you need in hospital are vastly different from anything you might wear on a normal day.
Basically, take clothes for comfort. Pyjamas, leggings, big tops.
It's also just easier if you don't wear anything metal, because most scans don't like it. If you're anything like I am, you won't bother with a bra for the time you're in there.
Socks were a biggy for me. You don't know who has been walking around your floor in bare feet, or what has been dropped onto it, so it's majorly important to cover up! Slippers would work just as well.
Step seven: Pain.
Just accept it. You're going to be put through pain in that place. Whether that's a simple blood test, or a tube being shoved into your neck, there will be pain.
With the more insignificant pain, like the blood tests, it gets done quicker if you don't react. If the phlebotomist, or doctor, can just take your blood without you flinching, they'll be done before you know it. Until the next day. And the next. And the next.
Step eight: You will be bored.
No matter how much you take in to entertain yourself, you will still feel like there is nothing to do. And you're right, there isn't.
When you're Neutropenic, most doctors won't like it if you leave your room. They're terrified that you'll leave and come back with some horrible disease or something; this is fair enough in a sense, because if you can't fight that illness off, everything will just get a hell of a lot more complicated, but it is annoying. Some doctors will be more lenient, and let you out for "walks", but f you're in my position, for the most part you'll be kept to your room/ bed, all the time.
Step nine: Muscle loss.
No matter how much you walk around, you'll lose muscle. You aren't exerting yourself enough, not really, and so your muscles disappear. In 2012 my muscles in my legs wasted away so much that I almost collapsed when I jumped over a puddle at St Mary's. That worried me.
A doctor had previously said that there was an exercise bike on the ward I could use, but I never saw it, so I don't know how true that was... I feel like hospitals should have gyms.
When you're let out, don't over do it. Again, in 2012, when I was released, I was back at work within a month and on my feet constantly. I felt better than ever, but I developed shin splints and was in pain for a couple months while that healed. Take it easy!
Step ten: Expect nurses and doctors who have absolutely no idea what is going on.
Keep an eye on your pill levels, because sometimes you'll be given the wrong amount.
As part of this step, just know that you won't be forewarned about having scans. Oh, your doctors will say they want to do a scan, but you won't be told when it's going to happen. The porters will come round with their wheelchairs, and you'll be expected to be ready to go.
Step eleven:
You will barely sleep. I've covered it all before in previous blog entries, but this one is a biggy.
Depending on what's wrong with you, quite often depends how often they check your blood pressure, but most likely it will be done around the clock. And after 7am, all bets are off! That's when the hospital comes to life. Your water, blood pressure, phlebotomist, , breakfast, food orders, etc, will all be done around this time.
Then the doctors will start coming round too, and you're expected to be alert for them! At Hammersmith, on the ward information, it actually said, "be present and alert when the doctors do their rounds", or something to that effect. I mean, what if you're too ill to be present and alert? What if you have dementia, or cognitive issues and you genuinely can't be completely there for the doctors' rounds? It doesn't make any sense to me.
Cannulas make it difficult to sleep too; ok, well, actually they make it difficult to do anything. Countless times, I accidentally pulled mine when I was attached to my IV stand, or knocked it when I rolled over in bed. Just expect it to be irritating.
That's about all I can think of at this moment, but if you have any questions or comments, please feel free to leave them. I'd be interested to read about anyone else's experiences.
As an end note, I had a follow up appointment with my haematologist last Monday and my blood levels are going back up again. This means the steroids and sirolimus are doing their job!
The table above shows the most recent results. I was 95 for haemoglobin and 0.5 on my neutrophils, so these are significant improvements! And most recently i've been told that my haemaglobins are over 130, so everything is looking pretty good!
Thanks for reading,
Rachel.
This one is for those people who might be going into hospital for some sort of treatment, or just to spend an inordinate amount of time there.
I'll give you a run down of everything you might need, as well as everything you might not. We'll also talk about what you need to prepare yourself for.
So, here goes...
As a side note, steps one and two are top priority. All the others are in no particular order.
Step one: Mentally prepare yourself. If you know you're going in, that is. I had an inkling, on the 28th of June this year that I might be admitted to hospital, but only because my immunologist had briefly mentioned it when my blood test showed low WBC. I was stupid enough to mentally prepare myself for a few nights on the inside, and not consider the fact that I might be in for much longer. I was putting too much faith in the fact that I'd been in before and that it would all get sorted much quicker, forgetting that the NHS is as slow as anything.
In my opinion, this one is way up there at the top of the list. Just be open minded to the fact that you're going to be there, because there's nothing you can do about it. The idea of a national health service is a wonderful thing, and so to have access to it is just as good, even if it does have its major downfalls.
Step two: If you haven't got a mini suitcase, get one. Hell, even if you don't think you'll ever spend a lot of time as an inpatient, get one!
I bought one several years back just so i could visit my friend, Hannah, at university. Never looked back. I recommend Samsonite.
Back in 2012 I didn't use a suitcase, and ended up with about ten different bags full of various items by the time I came home. This is because almost everyone who visits brings you something; fresh clothes, food, books, etc, and eventually you end up with a room's worth of stuff and fifteen plastic bags to bring it all home in. Not to mention the sack of pills the pharmacy will give you.
Stupidly, this year, when I went into Maidstone, I took a canvas Wholefoods bag, with a few pairs of underwear, pajamas, toiletries and some electronics. I didn't think I'd be in long. I ended up in the same predicament as five years ago; when I came home I had too many bags.
It wasn't until I was admitted to Hammersmith over two weeks later that I decided to use my suitcase and even then, I didn't have enough room for everything I wanted to take with me. Maybe I should have used a big suitcase... too late now.
Step three: Your phone!
Now, I know for 99% of people this goes without saying, but your phone is your lifeline!
There's absolutely no way you can just have what you want in hospital. Not without asking someone to bring it in for you. You need a phone to do this.
You also need a phone just to chat to people, send texts, scroll through facebook. It'll definitely help to entertain you during those long wait times! (All the time!)
Use the free wifi, because your data will run out, and if you don't have unlimited minutes then keep an eye on how much you call people! In 2012 my contract only allowed 300 minutes a month; I went way over that! I came out of hospital to a £300 phone bill, which I had to pay off in instalments. Don't let this happen to you.
Step four: Food.
Now, if you're like me and are going into hospital with little to no appetite, then this step probably isn't for you right now. But it could be, so just bear it in mind.
If you're in a ward you won't have your own fridge, but there is usually one somewhere behind the scenes that can be used. The nurses will have access to this, and it's their choice as to whether or not you can use it, so all you can do is ask them, but from everything I've seen, they're pretty accommodating. A lot of the women in my ward this year were keeping various yoghurts and things in the hidden fridge and just asked the nurses to get them sometimes.
I never used this elusive fridge purely because I have a bit of a phobia of germs (which I think is totally understandable) and didn't like the idea of my food sitting around where I couldn't see it. Besides, I think I'd have had to label it and eat it within a certain amount of time because they have to get rid of it after a while. I don't know the specifics as every hospital is different.
Most side rooms will have their own fridge. Pembury didn't, and neither did John Day Ward at Maidstone, but Hammersmith did and so did the side rooms in Lord North. When I was first given a side room in 2012 this was the part I was most excited about, regardless of the fact that I didn't actually want to eat. But it was a place to keep my drinks cold, and the summer was definitely heating up. Just don't forget to take everything with you when you leave.
In Hammersmith, in 2012, once my appetite had started to return and I was craving real food again, I kept ready meals in my fridge. And cheese.
Every ward I've been in has something called a "Day Room". I think it's supposed to be like a common room, as there are chairs and books. Also, if you're in a shared ward they like it if you take your phone calls in there, not that anyone actually does... anyway, at Hammersmith the "Day Room" had a microwave, so I used to wander down the corridor with my ready meal, heat it up and bring it back to my room. It was usually spaghetti carbonara or something, but it was ten times better than anything I could have got from the "menu".
I don't remember Maidstone having an obvious microwave, but I'm sure there was one. I think they did the jacket potatoes in one on the ward somewhere, so it was local, in a sense.
Most wards, especially oncology wards, will let you eat what you want. They'll be really good about it, because they will just be happy that you're eating something. One of the patients told me that the nurses will even arrange a cooked breakfast for you, if you want. I never tested this theory, but it's probably true.
But yeah, the point is, take food with you. Take snacks, and cereal, and ready meals, and drinks; squash is a must, as more often than not the water is slightly too warm, so the squash flavour will help to hide this.
Just stock up!
Step five: Entertainment.
Do not even consider going in without a book or two. Or in my case, a kindle, which I bought when I went into hospital in 2012. Well, I paid for it, dad picked it up. Thanks, pops. I spent most of my time reading, which was actually quite nice this year because I hadn't done for a while.
Also, if you have one, an iPad/ tablet is good, but the wifi won't be strong enough to buffer any videos, so Netflix isn't really an option. I didn't really use my iPad, unless I was facetiming someone.
This year, I had my laptop. I never had access to one in 2012, but I'm glad I did this time. The only reason I asked my sister to bring it in, is because John Day didn't have a TV, and I was bored doing nothing. So, my sister gathered together some DVDs for me, with the laptop, and brought them in. I rewatched seasons 1 and 2 of Breaking Bad, which was nice.
Step six: Clothes.
The clothes you need in hospital are vastly different from anything you might wear on a normal day.
Basically, take clothes for comfort. Pyjamas, leggings, big tops.
It's also just easier if you don't wear anything metal, because most scans don't like it. If you're anything like I am, you won't bother with a bra for the time you're in there.
Socks were a biggy for me. You don't know who has been walking around your floor in bare feet, or what has been dropped onto it, so it's majorly important to cover up! Slippers would work just as well.
Step seven: Pain.
Just accept it. You're going to be put through pain in that place. Whether that's a simple blood test, or a tube being shoved into your neck, there will be pain.
With the more insignificant pain, like the blood tests, it gets done quicker if you don't react. If the phlebotomist, or doctor, can just take your blood without you flinching, they'll be done before you know it. Until the next day. And the next. And the next.
Step eight: You will be bored.
No matter how much you take in to entertain yourself, you will still feel like there is nothing to do. And you're right, there isn't.
When you're Neutropenic, most doctors won't like it if you leave your room. They're terrified that you'll leave and come back with some horrible disease or something; this is fair enough in a sense, because if you can't fight that illness off, everything will just get a hell of a lot more complicated, but it is annoying. Some doctors will be more lenient, and let you out for "walks", but f you're in my position, for the most part you'll be kept to your room/ bed, all the time.
Step nine: Muscle loss.
No matter how much you walk around, you'll lose muscle. You aren't exerting yourself enough, not really, and so your muscles disappear. In 2012 my muscles in my legs wasted away so much that I almost collapsed when I jumped over a puddle at St Mary's. That worried me.
A doctor had previously said that there was an exercise bike on the ward I could use, but I never saw it, so I don't know how true that was... I feel like hospitals should have gyms.
When you're let out, don't over do it. Again, in 2012, when I was released, I was back at work within a month and on my feet constantly. I felt better than ever, but I developed shin splints and was in pain for a couple months while that healed. Take it easy!
Step ten: Expect nurses and doctors who have absolutely no idea what is going on.
Keep an eye on your pill levels, because sometimes you'll be given the wrong amount.
As part of this step, just know that you won't be forewarned about having scans. Oh, your doctors will say they want to do a scan, but you won't be told when it's going to happen. The porters will come round with their wheelchairs, and you'll be expected to be ready to go.
Step eleven:
You will barely sleep. I've covered it all before in previous blog entries, but this one is a biggy.
Depending on what's wrong with you, quite often depends how often they check your blood pressure, but most likely it will be done around the clock. And after 7am, all bets are off! That's when the hospital comes to life. Your water, blood pressure, phlebotomist, , breakfast, food orders, etc, will all be done around this time.
Then the doctors will start coming round too, and you're expected to be alert for them! At Hammersmith, on the ward information, it actually said, "be present and alert when the doctors do their rounds", or something to that effect. I mean, what if you're too ill to be present and alert? What if you have dementia, or cognitive issues and you genuinely can't be completely there for the doctors' rounds? It doesn't make any sense to me.
Cannulas make it difficult to sleep too; ok, well, actually they make it difficult to do anything. Countless times, I accidentally pulled mine when I was attached to my IV stand, or knocked it when I rolled over in bed. Just expect it to be irritating.
That's about all I can think of at this moment, but if you have any questions or comments, please feel free to leave them. I'd be interested to read about anyone else's experiences.
As an end note, I had a follow up appointment with my haematologist last Monday and my blood levels are going back up again. This means the steroids and sirolimus are doing their job!
The table above shows the most recent results. I was 95 for haemoglobin and 0.5 on my neutrophils, so these are significant improvements! And most recently i've been told that my haemaglobins are over 130, so everything is looking pretty good!
Thanks for reading,
Rachel.
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