Me and My Chicken Legs!

I'm out and discharged from hospital.  I feel really tired and lethargic and can hardly walk due to my wasted leg muscles.  I walk like a badly coordinated 96 year old.  That's not the worst bit, getting up to standing is a swine.  Don't even ask about the worry I had when I sat on the toilet (yes, I thought I was stuck and was going to need help to get up.  I just managed it though.  Not fun).  As soon as I was released I tried to start getting some walking done and to go up the stairs a few times (that's a killer).  Next morning the few scrawny muscles I did have were throbbing and I could hardly move my legs at all.  Standing wasn't only difficult it was bloody painful too.  So, as good as high dose steroids are for somethings, they are bastards when it comes to scoffing muscle tissue.  I now officially have chicken legs (or chicken bone legs to be more precise!)

On the plus side, I now have a stem cell harvest date and a scan date.  Fingers are crossed that the last chemo session (which I found really gruelling, more in another post) seemed to have worked (please, please).  Anyway, I now have to give myself 3 daily injections (yum, yum) in my soft white belly.  1 is called Fragmin and is an anti-coagulant, the other 2 are GCSF which is the drug that makes my poor tortured bone marrow release stem cells.  I have 2 of those because they don't do a single on in a big enough size.  Doh!  

TGI Friday?

It's Friday and it's nearly 4.30. I went to hospital for 9.30, joined the queue for blood letting. I then waited. Waited a bit more and finally did a bit of waiting. Was then invited in to be drained of the beautiful red life sustaining fluid known as blood. I sat in the chair (imagine an electric chair, but without the wiring. Oh and they don't strap you in. At least, I've not seen it happen) and they fastened on a little strap at the top of my arm and pulled it tight. Then they prod your arm, hunting down the most juicy looking veins. Recently, it has taken them a few goes to get all the blood they needed out of my dried up leather veins, that is, they have had to go prospecting, drilling in extra holes and looking for blood. Not fun. I mentioned this to my current vampire, I mean blood letter and she said, "yes, some of the nurses have difficulty finding good veins but we are too well trained for that. We wouldn't need to go in 3 times". She laughed, I guess amused at the nurse's lack of blood letting skills. This time I thought I was in luck, as the first blood container started to fill up, but then it sputtered to a stop. Oh no, I thought, not again. She withdrew the needle slightly, rooted around for the vein. Ow. She poked and rooted, then tried rooting and poking but to no avail. She look at bit sheepish and explained that she'd need to try again on the other arm. Well, at least two attempts is better than three. I'm happy to have one less hole poked in me. She moved the tourniquet to my other arm, poked some veins, found one that was a bit tender and jammed the spike in. I winced a little bit and she raised a professional eyebrow at the wussbag sat in the chair. The next container filled up, she unplugged it and plugged in the final one and....doh! the blood flow stopped. Stupid veins, I cursed. I didn't want a third spiking, but it was looking like one was in the mail and heading my way. She laughed awkwardly and went into root and poke mode again. Apparently, she hadn't learnt yet that when one of my veins says "no" it means "no". She did the poke and root routine a few times, to my discomfort, finally giving up, smiling unconvincingly and announcing/muttering that she had better find another vein. Whoopee! Third time better be a charm! She found another vein, with her supervisor looking over her shoulder, nodding and pointing and having the occasional vein prod too. "This looks like a good one", she stated and without so much as a "sharp scratch coming" announcement, she rammed home number three. Resulting blood flow: nada, zilch, nil. I started to giggle. I got a dark look. I carried on giggling. She rooted and prodded and thankfully, this time the root/prod method brough home the bacon. The last container filled up and I got a third bit of cotton wool and sticky tape slapped over the new hole. She quickly slipped away with the blood containers and I headed out.

Next, I had to wait around until the blood tests were completed. This takes about an hour. Not sure if it really takes that long or if the blood test people are in cahoots with the car parking people and get a cut of the extra hours car park fee. Maybe I'm being paranoid, but those blood testers all drive Jags and wear hefty Rolexes, so who knows.
When hanging around, waiting in hospital, there are loads of fun things to do. You can see how many people there are that look worse that you do. That can be fun. You can see if you can find the oldest edition of Home and Garden magazine in the pile available to read or just simply sit and make random grunts and squeals and see how many people you can get to move away.
After an hour or grunting and squealing, a nurse ambled by and whispered a list of mispronounced names. Thankfully, mine is quite hard to mispronounced (although she did try, bless her). I followed her, to another queue and was shortly invited in. There I was given some more tablet, but thankfully told that I don't need to keep injecting myself with Fragmin. Yay!

I forgot to mention that I was in hospital on Wednesday too. Tuesday night I was feeling unwell (again) and my temperature was high (38). I theory I should have gone in to A&E that night but being a belligerent git and having not long escaped from hospital and feeling not too bad, I decided I'd go in the morning, unless I got worse. Typically, my wife was away on a course and my little one decided to try and fall out of bed in the night and to wake up later after having a nightmare and be a bit freaked out and crazy. Basically, I didn't sleep too well. Anyhoo, my temp wasn't too bad and I was alriht dropping the kids off to school and child minder. I then zoomed over to the ma-in-laws and she dropped me at hospital. There, I, guess what, that's right, had a blood test (which took two people and three attempts) and then got to loiter and wait around for an hour, see a doctor, get a prescription for some GCSF (as my neutrophil count was below 1) pre-filled injections (so I can do it myself), wait 40 minutes at pharmacy whilst they took the box out of the fridge (or whatever they do) and then got home in the afternoon.

Anyway, Wednesday aside, back to today. As I had been coughing (and still am) they sent me for a chest xray (all clear, no problems), saw my bone marrow was lobbing out lots of immature neutophils, so my counts should be going up and was allowed to stop those injections too. Hooray, no injections for a week or so. I've also noticed that my blood clot symptoms have almost gone. My arm is no longer swollen, my hand doesn't look like a boxing glove and the veins on my chest and neck have subsided a fair bit (although they are still a bit prominent). All good signs.

So, on to next week. I'm back in work on monday, although I have to go via the hospital and give them some blood. Hopefully they get it first go. Wednesday is another blood test and then Friday is chemo number 8, the last one! Oh, preceeded by a blood test, of course.
So, once chemo 8 is out the way, I then get to wait until I feel improved and there will be a scan. This is where the anxiety or scanxiety will kick in. These are the scans that will show that either a) I can rejoin the ranks of the healthy, once again free to mock the afflicted and laugh in the face of danger or b) nope, sorry buddy, primary treatment hasn't killed the critter dead, so it's on to the harsher stuff. Brace yourself Mildred, this may sting a little. So, even though it's a good few weeks away, I can feel the vague hintings of scanxiety a tap, tap, tapping at my door.

A less whingy post next time, I promise!

Today, the weekend and bits of thread

Hello again!

Well, the weekend was pretty good. My wife and I got away for the day, to belatedly celebrate our anniversary. The kids were taken by their aunty to see Kung Fu Panda and then stayed the night with the grandparents. So it was cool, we got to go out, lounge around, eat and be merry (didn't mention drink, as I have been told not to have more than 2 units a day, due to the evil clot. Boo!).

I was still a bit vague on Saturday but so much better than Thursday and Friday when I was in my drink/pee repeat cycle of fun.

Friday I had to attend the jolly anti-coagulation clinic. This involved: going to hospital (late, because trying to get kids ready and them not complying, also we had no working shower as it had been ripped out to fit new one), trying to park at hospital, being unsuccessful trying to park for ages, finally parking, joining the queue to have blood taken (big queue but anti-coag clinic people get priority, but there were a fair few of them anyway. Glad I wasn't a normal blood letting punter, they must've queued for ages), get called in and have a needle stuck in and rummaged about a bit to find a working vein that isn't made of leather, go away and wait for 40 minutes while the blood is tested (sit down and eat cake. Yay!), hang around main reception until a quietly spoken nurse mumbles your name which you just catch before she wanders off, follow mumbling nurse, join clinic queue, wait, get called into an office, get told your blood is not behaving and you need more daily injections, get told to come in again Monday for more blood testing, go home. So not too bad.

Saturday, we needed to go out, but the nurse had not arrived to give me my injection, so I got brave. I had been shown how to self-inject but wasn't especially enamoured by the idea. But, we needed to get moving or we'd be late, so I got the Fragmin syringe (called a pen for some reason. Nasty spiker would be a better name. Pen sounds so innocuous, perhaps that's the idea), stared at it for a while and then with shaking cowardly hands stuck it in. I did a double take as I looked at it sat there buried in me. Strangely it didn't hurt and was quite straight forward to do. So, I pressed the plunger and grinned at myself for not being such a chicken.

Sunday, the nurse came over to give me my other injection (GCSF). I can do this myself too, but it's a bit more involved and needs mixing and messing about with but the nurse is going to teach me how to do it, then I don't need to wait around for them to call.

Oh yeah, I almost forgot. When the nurse gave me an injection the other day, something bizarre happened. The needle went in, the plunger was pressed, but when she tried to take it out, it was stuck. She had to pull and tug on it, looking bemused and somewhat unnerved. Finally it came out. It looked like it was stuck on a hair, but on closer examination, it looked more like a piece of thread. I pulled it out later and it was some sort of thread, about an inch long. How it got under my skin, I have no idea. Kind of worrying. Perhaps the tumour has set up a sweat shop in there, knocking out cheap T-shirts and stuff. Anyway, it freaked me out somewhat!

Inject me good

On Saturday morning I was still a bit zombie-esque but livened up by the afternoon. My wife, the kids and I went to Bridgnorth in Shropshire to visit my wife's best friend. We got there, had a bit of a chill out and then went to find something to eat. We ended up in a pub, not far from her house. The food was okay but the bar staff seemed to be having a sponsored sulk. I expect they made a fortune on that. Unfortunately, Harry, my 3 year old, decided that now wat the time to test his boundaries and investigate his parent's ability to maintain discipline, whilst in a public place. Basically he started acting like a little swine. Generally being naughty and screaming. Perfect. Sam, my wife, was trying to calm him down and finally cracked, taking him outside and returning magically in less than a minute with a calm boy. Not sure how she did it, but it probably involved shouting and pointing! Later on I went to bed and the ladies went out on the town (I was a tad envious, as I've not been properly (i.e. drunkenly) been out for ages). They stumbled back in around 1ish, with Sam's friend the worse for wear, complete with some burger (from the compulsary burger/chips purchase on the way home) stuck to her cheek. I didn't mention it, as I thought it would be a nice discovery in the morning.
Next morning, for some bizarre reason, Harry decided to wake up at 6. Normally, he is difficult to coax out of his bed in the morning. Must be due to the new scenary and that there was a new cat to chase around. Sam's friend was up and active (much to my disbelief) and took the kids for a walk whilst we got up in a more leisurely manner (yay!).
We took Harry to see the steam trains at Bridgnorth station as he is currently obsessed with Thomas the Tank Engine and friends (I can sadly admit that I can now name the vast majority of the trains, due to over exposure). He loved it and got really excited.
We got home around 8pm and that about summed up the weekend. Oh, we watched Lost, which is about the only show we both like. She likes Sex and the City, which I can't stand and I like Battlestar Galactica, which she hates. Ho hum. By the way, the start of this series of Lost, I reckon was a bit pants but now, since the break, it's getting pretty good again (although not a touch on Galactica, that has got to be the best TV at the moment).

Monday was blood test day and there was a big old queue this time, with it taking over an hour to get seen and puntured. I went for some lunch then but after started to get the familiar feelings of coming down with something (headache, sinus like pain and generally unwell feeling, with a rumbly tum). My temperature was up to 37 but no higher. Tuesday I still felt under the weather a bit but felt improved. I got a call from the hospital to say my white blood count was low and they wanted to start me on a course of injections to kick start the bone marrow into producing more. The stuff they inject is called a granocyte colony stimulating factor. Sounds good to me (appart from the injecting bit).
Last night Harry was poorly, which is kind of ironic, as the hospital told me to be extra vigilant about keeping away from ill people, but not a lot you can do there. Today, Harry has perked up, but still seems a bit under the weather. I feel pretty decent and have just had the lovely district nurse, a lady called Claire, pop round to give me my first of 3 injections. It wasn't bad, she was pretty good at injecting it slowly, so it didn't hurt (unlike the last time I had one, where it felt like they were having a good root around inside! Perhaps I'm just a wuss.)

Scan time

This week I've felt a bit rubbish. I got a chest infection and my temperature shot up. I went to the docs and got some anti-biotics, which started to do the trick. The plan is for us to nip away this weekend and I don't want another bank holiday spent in hospital, so I checked in with the clinic and they told me to come in for a blood test. Anyway, wind back a bit, it's been a bit of a busy day, involving visiting 2 hospitals, getting a scan, a blood test and a shot.
I had a scan scheduled for today. The idea was that I'd then have the results in for my next chemo appointment (a week on friday). The hospital rang me on monday to say they detected elevated blood levels that indicated a possible infection. I had just been to the doctors and got some antibiotics, so I knew what they were talking about. During the week, I'd still felt rough and my temperature had jumped around a bit, so the plan was that I'd give a blood sample at the hospital I was getting the scan at, prior to having the scan and then go to my usual hospital after the scan and get the results, to see if I would be okay for the weekend.
I got to the hospital in good time (thanks to Mr. SatNav), gave a blood sample. The blood was taken by one of the nurses who usually takes it at my local hospital, which was a bit strange, but apparently they go around all the hospitals doing their blood thang.
I got to the scan appointment early, but they were running late. I got brought a big old jug full of a frothy looking clear liquid, which I had to drink over an hour. I had had a scan previously, during diagnosis, so knew what to expect. The main difference was that the drink I got at the hospital during diagnosis (private appointment, thanks to medical insurance) was mixed with squash and tasted good, whereas the NHS version tasted like aniseed and was foul. It took the hour to get through the foul stuff this time. Yack. Not nice. Next time, I'll take my own squash along!
Anway, after an hour they came and took me through to get changed. You get to wear one of those "open at the arse" backward fitting hospital gown efforts. I'm pretty sure they are only for comedy value, to keep the spirits of the nurses up. With my "outfit" on, I was led through to the scanner. It looks like a big, humming doughnut, with a flat bed at the end, that passes through the hole. I layed on the bed and someone came to stick another needle in my arm. They didn't do too great a job of it and sprayed my gown with a touch of the old claret. Anyway, you lie down and they leg it out the room and the doughnut tells you to "breath in and hold your breath". You're then fed through the hole slowly, getting told you can breathe normally, just before you have to anyway. Then they feed in some contrasting dye stuff through the needle in your arm and its time to go through the 'nut again. Finally, they get you to hold your arms above your head and its repeat the drill. Then, that's it. Needle is taken out and you're out of there.
I drove over to the clinic and after waiting a few minutes got to see my consultant, which was cool, as I'd not seen him for a while. He went through my bloods and told me that the infection markers had come down but that I was neutrapenic, which means that the neutraphils in my blood were below 0.2 (where normal is about 3). The neutraphils are the little dudes that make up the majority of your white blood cells and are responsible for fighting infection. So, obviously, when there arn't many around, you're pretty open to infection and more worryingly that can lead to sepsis, which can be fatal. Whilst I was there he was able to show me the scan results. He said they're not officially released but hey, I was happy to see. He showed me the original one, with the chest monster sat there. There were parts that measured 13cm across! It still freaks me out to think about it. Then, he showed the current scan and there was not much left of that big mutha. There are still abnormal cells but no big mass! I was well chuffed. He was very pleased and said I was showing an excellent response and was on track. All good. He was then able to check my lungs and sinuses for infection, which was a bonus. There was a very small amount remaining in the lung but not a lot and the sinuses looked clear now too, which was cool. So, with the antibiotics, he thought I'd be okay to go away, but just to make sure, I was given an injection of GCSF (this stuff stimulates the bone marrow to make white blood cells).
So, all is good. I feel much better today and my blood count should be building up. I just need to check my temperature regularly.