31 August 2011
29 August 2011
Last Monday I got the all clear from the surgeons who said I could leave that day. The only loose ends I needed to tie up were getting the Hickman line removed and getting a few week's worth of prescriptions to hold me over until I had a chance to get an appointment with a GP at my local surgery. Both went relatively smoothly, though removing the Hickman line was a bit interesting.
I was a bit nervous about having the Hickman Line removed for one reason or another. I mostly was worried it was going to feel really weird when it was moving out of the vein in my neck and under the skin on my chest. The first thing the lady did was feel around on my chest for where the cuff held the line in place. She needed to find this so she could inject some anaesthetic and make an incision to remove the line. Unfortunately, the anaesthetic stings like hell, and she didn't find the right place the first time. Not only that, but she didn't realise it was the wrong place until she had done a considerable amount of digging which I could feel against my sternum. It wasn't that it hurt, but it felt incredibly weird.
Eventually she found the cuff was actually located very closely to the exit site for the line, and once she numbed that area up, and made the incision, it was only a matter of seconds before the line was out. And because I had been injected with an incredible amount of anaesthetic, I didn't feel any part of it coming out--in fact, I hadn't realised it had been removed until she said all was over and showed me the line. She then proceeded to stitch me up, and told me to keep lying down for at least 30 minutes to minimise bleeding.
Once I got wheeled back to the bay, I noticed the dietitian had kindly dropped off a box of supplement drinks. I was a bit worried at first because the side of the box said strawberry, and I already have something like 72 bottles of strawberry flavoured Fortisip Compacts at home. Luckily, it was only that the box said strawberry on the side, and she had provided me with a variety of different Fortisip and Fortijuce flavours which I've been trying out over the past week. It turns out these drinks are much more palatable when I'm not feeling completely rubbish, and I've been managing three a day--an extra 900 calories total--quite easily.
Since I've been home, I've been keeping relatively busy. My dad has been here to help me carry things. Since I have an 8-inch incision running vertically down my abdomen, I am not really supposed to be lifting anything more than 10 pounds, or partaking in strenuous activities. This means that food shopping by myself is out, and I can't do too much housework. I have been managing to get out for walks around Richmond and the local area, and participating in "light" tourist activities such as a boat ride down the Thames from here to Hampton Court. I've also been cooking again, which has been really nice.
In the past week, we've enjoyed a number of delicious, home-cooked meals:
Tuesday - Spaghetti Pie and Garlic Cheese Bread
Wednesday - African Drumsticks (a Nigella recipe) and Long Grain Rice
Thursday - Yellow Curry Chicken and Jasmine Rice
Friday - Orange Glazed Pork Chops with Baked Sweet Potatoes
Saturday - Meat Loaf with Creamed Peas and Potatoes
Sunday - Meat Loaf sandwiches with Chips and Onion Rings
Not only that, but I've been able to enjoy meals out again, which has been really nice. Today, my boyfriend and I had what I'm going to call "America Day" where we went to an American deli for sandwiches followed by a trip to an American bakery. The deli--the Pickle and Rye in East Sheen--has a brilliant sandwich menu. I went for the BBQ pulled pork sandwich, and my partner opted for The Toronto. Both sandwiches were impressively large (how American of them!) and were served with a proper dill pickle spear on the side. I love dill pickles, and was quite pleased to finally have two proper dill spears (my boyfriend kindly gave me his--apparently he has not caught onto the brilliance of these things). The BBQ sandwich was also good--really good. The meat was incredibly tender, perfectly sauced and piled nicely on a soft roll with some lettuce and home made coleslaw. I was a bit sceptical about the coleslaw at first, but it offered a nice peppery flavour to the sandwich which paired well with the BBQ pork.
The American bakery--Outsider Tart in Chiswick--is a favourite place to visit on Bank Holiday Mondays. They offer a great variety of baked items one typically finds in America (whoopie pies, loads of cookies, certain kinds of cakes, etc.), and they make amazing coffee drinks. Seriously, trekking to Outsider Tart for the coffee alone is worth it. I've not had a latte with milk so smooth since I worked at Ancora Coffee Roasters my last year of university. But, if you're going to trek to Chiswick for coffee, you may as well enjoy some delicious American baked goods as well. Today we picked up two chocolate cupcakes with vanilla frosting, a lime curd bar (similar to a lemon bar but with lime) and some sort of apple crunch cake. Obviously my hunger is getting the better of me since I picked two items for myself, but we also got something for my dad, hence the four in total.
So my recovery is going remarkably well in all. I've not really used any pain relievers over the past week, and if I have it's only been paracetamol. I have a follow-up with the GP Friday to get my prescriptions sorted out, and another appointment the following Friday to have my staples removed. In the meantime I'm waiting for a follow-up with my gastro consultant and the dietitians in Kingston to see how I manage my disease going forward, and optimise my diet so I can get back to a healthy 50 kilos or so before too long.
Even though I have a load of appointments to follow-up on, at least it's been a nice change to be out of hospital and getting on with a semi-normal life.
21 August 2011
If you ask me, my recovery is going brilliantly. I didn't wake up in excruciating pain in the wee hours of the morning the past two days, and really didn't have any pain when I woke up this morning. In fact, I discovered I can now lie on my sides and get myself out of a flat bed. Win.
Yesterday, I treated myself to a proper shower--the first one I've had since the Hickman line was placed over six weeks ago. The good thing about being on a surgical ward is that they have all kinds of different wound dressings, and managed to hook me up with a waterproof one for my incision, so I figured I'd ask for one for my Hickman line as well. I have to say, that shower felt pretty awesome.
Yesterday was also the first day I started eating normally. I was still a bit feeling a bit apprehensive/cautious, and wasn't actually feeling all that hungry either. Regardless, I managed a bowl of Rice Krispies for breakfast, 1/2 a chicken mayo sandwich (which required 10 minutes of picking off sweet corn before I could eat), 3/4 of a Build-Up soup and a Fortisip for lunch, and a chicken breast, potatoes and a Fortijuce for dinner. So not necessarily a load of food, but more than I've eaten in a long while, and with the supplements, I still managed a fair number of calories too.
I'm happy to report that what I managed yesterday settled in my digestive system with little issue. Not only that but things seems to be functioning in a relatively normal way. I think it will take a week or two for my digestive tract to remember how to process normal amounts of food, but so far I can manage things. I'm just stoked that I managed to eat a bit of meat without hurling!
I think the best thing, however, is that I am getting my hunger back. The first few days after surgery, I think the pain from the surgery was overriding my hunger, but now that I'm mostly pain-free, the hunger is back. I just hope my digestive tract can keep up.
I'm not exactly sure when I'm going to be let out of hospital. The surgical team will probably be happy to let me go tomorrow, but I think the gastro team will want to keep me until at least Tuesday. The PN stopped Friday night, so at least we will have an idea whether I can manage on my own. At the very least, I should be able to get a few days of day-leave, which would be nice now that my dad is here for a few weeks to help me around my flat during the day.
I have to say, I was a bit skeptical that recovery could be so quick given my relatively frail state, but I am quite pleased with things so far, and I cannot wait to go home.
19 August 2011
I'm in my third day of recovery following my surgery Wednesday. Things are progressing quite nicely.
Yesterday was probably the toughest day so far, though I think the day after usually is the worst. Things were quite sore, and it was difficult to move around. Not only that, but it was difficult to catch a deep breath, or even breathe at all. It's not until you've had you abdomen ripped open that you realise how important some of those muscles are to things like breathing and just supporting yourself.
Other than the soreness, things were good. The surgeons stopped by in the morning and said the catheter could come out and that I should get out and start walking about. I had to have a nurse help me out of bed the first time. Obviously it was quite painful, but my blood pressure was quite low, so I was feeling a bit woosy. She was very kind and helpful. She got me to my chair and helped me get washed. I started feeling much better once I was sitting upright, and I managed to move about on my own during the day. The surgeons also said I could be on free fluids which meant I could drink whatever I wanted.
Unfortunately, I didn't get a very good night's sleep last night. A new lady was brought into the bay last night and she snores incredibly loudly. She only seems to snore at night, or when she doesn't have an oxygen mask on. So, I managed about five or six hours of sleep. It doesn't help I wake up in a fair amount of pain at 05:30. I had requested some Tramadol for pain a bit earlier, but it is pretty useless for me. Paracetamol has actually been more effective, especially in IV form (though that early morning dose is the only one I get intravenously, the rest of the time I take it in a dissolveable tablet form.) One of the people on the surgical team prescribed another pain killer, so hopefully that will work well.
Surprisingly, I've been on oral drugs since I came out of surgery. It's true that most are in some liquid form or other, so they're easier to absorb in my current state. One is Metronidazole which is administered via an oral syringe and makes me feel like a little kid when I take it. It has a very interesting taste. Hopefully I won't be on it very long.
Today has gone pretty well so far. The surgeon stopped by and said I could work with the dietitian to reintroduce food. So when the dietitian stopped by, I had a chat with her to come up with a plan. For today, we are sticking to liquidy/soft stuff including jelly [jello], Build Up soups, Fortisip and Fortijuce. If I can keep these calories down without pain, then I can try normal food tomorrow. Additionally, I'll be getting my last bag of PN either tonight or tomorrow. Everyone agrees, that is, the dietitians I've talked to, the doctors and the surgeons, that the best way to gain weight is to eat normally.
So far everyone, including the surgeons, doctors, dietitians and myself are quite pleased with my recovery. They changed the dressing on my wound this morning, and it looks like I might have lost my belly button. The surgeon said they tidied up my previous scars, and I think this one will be much nicer. Though I have to say I'm not looking forward to having all the staples removed!
Hopefully if all goes well, I can leave the hospital Monday or Tuesday. Hell, I could be doing a lot worse like the snoring lady who had less-invasive intestinal surgery but I've unfortunately seen be sick twice. I guess she doesn't know how to take it easy! A
17 August 2011
I had my surgery this morning. Things went well and they only did the strictureplasties, no resecting. I spent a few hours in recovery before being moved to a surgical ward for the rest of my stay.
I'm not in too much pain at the moment, and I'm confident I will have a speedy recovery. Other good things include not having an NG tube and being able to sip water. This already puts me on a faster recovery trajectory than my previous surgeries. I suppose tomorrow they will try to get me out of bed, and we'll move on from there!
16 August 2011
Last week the various teams of doctors around here had conflicting opinions on how they wanted to treat me. I couldn't even tell who was actually in charge of my care. There was a gastro consultant who had come round who confirmed the point that I needed surgery, and there was a gastro registrar who seemed to be working more closely with the dietitians who wasn't necessarily convinced that surgery was the only option, and wanted to at least do some more testing, which involved another MRI. The MRI showed that nothing had changed since the last one in April.
Yesterday, when the gastro registrar made his ward round, he said he was ready to send me on my way. I was a bit confused by this as I have barely stabilised my weight since I've been at St. George's, let alone actually gained. Not only that, but I would have been reliant on maintaining my weight by oral intake alone because the home PN program takes six to eight weeks to set up, and I've only been here for a little under two weeks. Luckily(?), I was a bit sick over the weekend, and the registrar no longer thought it was a good idea to send me home.
That meant I got to be here for ward rounds today, which were very exciting. First, the gastro consultant and his team came round. They informed me that the surgeon was back from his holidays and would be around to see me this afternoon. They also informed me that I could be having surgery as soon as tomorrow. I was a bit overwhelmed by this news, but also a bit excited. The consultant said I should prepare all my questions for the visit with the surgeon in the afternoon.
Turns out I didn't really have that much time to prepare for the visit with the surgeon, but to be honest, I've had two small bowel resections, one with a right hemicolectomy (meaning the right side of my large intestine is gone), done in the past and I have a rough idea what to expect. It was kind of funny when the surgeon stopped by, I was on Skype over the phone with my dad, and he got to eavesdrop on the entire conversation. He's actually gotten to listen in on a few random conversations I've had with staff here because no one realises I'm on the phone when they stop by.
My main question for the surgeon was whether he thought I was fit enough for surgery. He said given my current health situation, I probably won't get much healthier, and could in fact lose ground if I decided to wait. Of course, there are risks associated with surgery, as there are with any surgery. These include bleeding, infection and the possibility of a reversible ileostomy (i.e. a poo bag that would be attached to my stomach), that would require further surgery to reverse. Knowing these risks, I'm still ready to have the surgery, and hopefully get back to a normal life soon, and since I'm having this done now, I may actually be well enough to go home for Thanksgiving! I can't tell you how disappointed I was at first when I thought I'd be stuck here for the holiday (as previous posts have pointed out, I love stuffing my face at every opportunity, and Thanksgiving really is the perfect holiday for this).
Otherwise, my stay at St. George's has been uneventful. There were a lot of discharges on the ward yesterday, and half the people in my bay are new. Two of them are also sufferers of IBDs, one with Crohn's the other colitis.
Yesterday I was served the most "interesting" pudding. It was supposed to be butterscotch rice pudding, but I think it looked more like sick. And it really didn't taste of anything. What do you think: pudding or sick?
Pudding or sick? You decide.
08 August 2011
Being in St. George's for the past few days has certainly been interesting, and one thing I'm quickly learning is that I need to enjoy my youth while it lasts. Of the six of us ladies in this bay, I am the youngest by at least 35 years, probably 40 (I am 28, by the way). This vast age difference has made me realise that old age isn't necessarily something to look forward to. Sure, you get to retire and do whatever you want, provided your pension is adequately funded for it, but there are also several downsides to growing old.
1. Old people are sick more frequently than young people. This has been proven by the ratio of old-to-young people I have seen in hospital in the past two months. Even when I was in Kingston, I only saw a handful of people under 40 as patients on the ward. I'm sick enough as a 20-something, I'm not looking forward to being sick more frequently in old age. I guess the advantage I have is that old age is still a long way in my future, so maybe there will be some incredible medical advances when time comes.
2. Old people are either lazy or unable to do much for themselves. Sure, it sounds nice to have someone else do a lot of stuff for you, things like cook your meals or clean your house, but I dunno if I could handle having someone wheel me to the toilet or change my adult nappy (diaper).
3. Some old people are just plan crazy. The lady in the bed next to me likes to stay up at night saying, "hello? Hello? Hello?" (she's even doing it as I type this post, and actually woke me out of a sound sleep last night). Then if you make the mistake of needing the toilet when she's doing this, you get stuck trying to explain why you don't want to chat and that it's bedtime. Eventually I gave up and called a nurse for her.
Another lady here also seems a bit crazy, but the more I overhear, the more I think her situation is just overwhelming for her. She's Sri Lankan and was apparently brought to the UK for medical treatment. I don't think she knows her next of kin here all that well, and is coping a little poorly with the situation. She seems nice enough though; I even had a 5 minute chat with her earlier about some of the craft stuff I was working on (which is the most English she's spoken at one time since I've been here).
I'd also say the French lady across from me is a bit crazy because she likes to snack at random hours of the night, but she is kind of entertaining. My knowledge of French is very limited, but I can pick up on a few things when she tries speaking to me, and she seems to have a good sense of humour.
Either some of the perceptions I had of old age were wrong, or being in hospital has scarred my image of old-age. I imagined that when I got older and retired, I spend my time travelling the world, spending time with family and engaging in more of my hobbies like baking and knitting, not lying in a hospital bed waiting for someone to change my nappy.
06 August 2011
I've had mixed feelings about the move so far. Tooting isn't the nicest neighbourhood, and I no longer have the privacy of my own room. On the other hand, I do think the nurses here are better at dealing with Hickman lines and administering TPN. St. George's also has the advantage of having specialist teams for pretty much everything.
After I arrived, a junior doctor sat with me for a bit to get my history. They had my notes from Kingston, but he wanted to get a bit more information for himself, and who am I to deny a Q&A session with a student if they stand to learn something (unless, of course, they are trying to stick cannulas in my arm)? Surprisingly, someone from the dietitic team also came by to introduce herself and let me know the entire team would be round Tuesday to get me on my way. I still need to figure out whether St. George's will also be taking on my surgical case, or whether I will be back at Kingston for that, but I imagine I have a few months before I have to worry about that.
The worst part of my stay so far is that I am in a bay with five other women. The lack of privacy doesn't bother me as much as they amount of noise some of them make. One likes to listen to her TV without the provided headphones. Not only that, but she likes to listen to it very loudly. Another woman makes groaning noises through the night as though she is in some in incredible amount of pain. Oddly, she does not make any of these noises during the day, when she seems to do most of her sleeping (and she wonders why she had a rubbish night's sleep). She also has a habit of closing the windows in the room even though it's roasting in here. I have a bed right by the window, am wearing shorts and a t-shirt and am just comfortable, and the nurses agreed with me that it is warm in here. Lastly, there is a crazy lady who just randomly came over to my bed last night for no reason. I think she tried talking to me, but she doesn't speak English, so I had no idea what she was on about. She also made a mess on the floor after lunch. Luckily I missed most of that event.
I really hope the home parental nutrition treatment sorted out quickly, and I can get back to a semi-normal life in Richmond soon. I don't think I can retain my sanity for much more than a week in this place.
03 August 2011
I guess the hot spell wouldn't seem so bad if I was in a hospital that had air conditioning. I guess the people building the hospital also didn't think the temperatures here would exceed 30°C too often, and did not see air conditioning as a necessity. I'm happy I have some experience dealing with this, as it doesn't seem that many of the natives are coping as well as me. And I can only imagine what the nurses are going through with all the running around they have to do.
At least this isn't Geneva, Switzerland. I spent a few weeks there last summer when my boyfriend lived there, and there was quite a heatwave the second week I was there. There is virtually no air conditioning anywhere in that city (not even the mall was air conditioned!). The best bets for relief were the trams, some buses and McDonald's. Luckily, McDonald's had the Cornetto McFlurry at the time, which is probably the best McFlurry ever, aside from maybe the Oreo McFlurry they have during the "Tastes of America" campaign in the UK. The worse I've had was in Amsterdam, some horrible Dole fruit cocktail McFlurry (or so it seemed, I think it was branded as Chiquita, which I thought meant banana and chocolate). Sadly, McFlurries in the US pale in comparison to those offered in Europe, as do the speciality burgers. Anyway, I digress, the McFlurries in Geneva and the special "snack" burgers (they had one with mozzarella, basil and roasted tomato) gave us plenty of excuses to escape the heat.
At least Britain is finally getting a taste of summer. Before we know it, tomorrow probably, it will be gone again.
01 August 2011
I'm still looking rather thin, but I am starting to fill out a bit. I'm hoping in the next week or two that the jeans I'm wearing in the photo will actually fit. At this point, I can't really walk more than a few feet before they start sliding down. Too bad the jeans-around-the-ankles look isn't in fashion.
The IV I'm hooked up to in the photo isn't actually my TPN, but the last dose of antibiotics used to treat the infection in my Hickman line. As you can see, the beauty of my line is that it is fairly unobtrusive, and isn't too noticeable under my clothing (unless, of course, I'm actually hooked up to an IV at the time).
I survived eating the piece of roast chicken breast at lunch yesterday. I did feel a bit uncomfortable in the evening, but I think it is more a matter of my digestive system getting used to an increased volume of food. It's a bit of a struggle to eat much after you've not eaten normally for more than three months! The important thing is that everything seemed to settle fine in the end, and I really enjoyed that piece of chicken.