Waltzing on the Ambassador's Lawn

I'm still incarcerated in the Wexham Hospital of correction without being charged.

Remember Zebedee from the Magic Roundabout, many years ago?  He was like a spring with a head on and used to boing around everywhere?  Well, my temperature has decided to become just like him.  One minute nice and low, the next it flies up to the highest heights (accompanied by the sound of Kenny Rogers and that woman whose name I can't remember singing some song about something being lifted up where it belongs.  If that makes any sense to you, you're doing better than me).  Now, Mr. Holmes, where it gets even weirder, is that sometimes, when the temp is high I feel ragged and just want to sleep and maybe grunt occasionally and other times I feel footloose and fancy free, desiring nothing less than to waltz, Viennese style (is there such a thing?) across the ambassadors lawn (okay, slight exaggeration, I feel okay and am content sitting up, reading, typing on the laptop and not just wanting to doze.)

Not a lot happening otherwise.  I either lie here, wanting to go home or lie here wanting to go to sleep. 

Almost forgot.  I received a couple of units of blood in a transfusion (sorry if that loses me any Jehovah's witness readers, of which I am guessing there are a fairly vast number).  No one had warning me and when I saw the nurse approaching with a bag of blood I was strangely freaked out.  Apparently, my red blood count had been slowly dipping and they wanted to raise it up.  It seemed to help and made me reconsider my move to not join that marauding vampire gang back in '96.

Well, I think that was one of my most bizarre posts to date.  Not sure what is going on with my brain today, but thought I'd share its outbursts with you, gentle reader.

Until next time...

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!

Blood clots actually suck

Now the relief of the Lymphoma not regrowing has subsided a tad, the realisation of having a stupid blood clot has dawned. I went to see the anti-coagulation team at Wexham Park hospital yesterday and they explained the treatment plan. It kind of sucks.
I am currently receiving daily injections of Fragmin, which is a drug which slows down the rate at which my blood clots. The treatment for the blood clot is either: a) daily injections for 6 months (yes, 6 months!) with accompanying monthly blood tests OR b) daily Warfarin tablets (yes, that's rat poison, but it also slows blood clotting) for 6 months with weekly blood tests.
There won't be any further scans or checks to see if the clot has gone, just keep on going for 6 months. Seemed a bit crazy to me. I'll be having some scans anyway as part of the cancer treatment. Surely, if they show the clot has gone, what is the benefit of continuing the treatment? Or at least, why keep going so long. I'll be talking to my consultant about it on Friday.

I must admin, part of the reason is that when on Warfarin/Fragmin you are warned to stay away from alcohol. If I am given the cancer all clear, I don't want anything in the way when it comes to celebration time!

Blood clots rock!

I've got a blood clot in my neck and tonight I celebrate!
No, I'm not completely insane (I have a certificate that says so). If you've been following the blog, it will make sense, if not, then recently I was told that one of two things had happened. Either: My Lymphoma had stopped responding to treatment (bad, very bad) or I have a blood clot (not great, but better than option one). I had a CT scan today. I got to the hospital in Ascot and couldn't find anywhere to park. I was driving round for 30 minutes trying to park and then had to take a chance and wedge my car on some double yellows and hope I got lucky as my scan appointment was getting real close. I ran/hobbled/wobbled to the reception area, filled out a form (you always have to fill out a form of some kind) and within minutes was called in. I got to wear one of the backwards hospital gowns, but only needed to take my top off. I went in, laid down on the magical sliding table, got a needle stuck in my hand (they always have to stick a needle in at some point in hospital). I was pulled in and out of the machine a couple of times and then released back into the wild. Then I got to play the waiting game. Luckily my car was unclamped, which I took as a positive portent of good news (hey, I was clinging onto anything positive looking). I got home, my fence was nearly done and I shot off to get a late late late lunch. Part way through I got a call from my consultant buddy (he's now my buddy, as he gave me good news. I'm pretty fickle).
He said, "...the scan showed two things..."
At this point I held my breath and my mind completed his sentence for him with "1. the Lymphoma has grown and 2. you're a goner!", (not really helping brain!)
He continued, "Firstly, the Lymphoma has reduced in size to 7cm by 2.7cm and secondly, a blood clot is visible in your neck". Okay, so he didn't say it exactly like that. Once I had the first point, I dived in to ask how his alotment was going. Hey, blood clot news can wait!
Anyway, I am a happy boy. Yes, I have a blood clot, but the alternative was not even slightly welcome. Perhaps that is standard hospital policy, when there is some bad news, e.g. a blood clot, perhaps they scare you with a possible worse alternative first, so you're happy with the news! A concept from NLP known as reframing in fact. Even though I know the concept, it still works!

Knocked sideways

In a strange place at the moment. All was going well. I had 2 treatments to go, the scans all looked to be progressing well and then this.
It was something I nearly didn't mention. I noticed that my left arm felt a bit tender, around the forearm. It felt tight and kind of "pumped up" (like just after working out at the gym). It felt a bit bigger than my right arm and hurt a bit if I squeezed or prodded it (yes, easy answer, don't squeeze or prod it!).
Anyway, I mentioned it to my nurse when she came round to give me an injection and she said to ring into the unit and get their advice. They said to either come in or nip to see my GP. As it's usually impossible to park there, I opted to see my GP. He agreed that it was swollen compared to the other arm and saw that the veins around the shoulder looked dilated. He told me to go in to the unit and get their opinion. So, yesterday I did.
My usual consultant is away on gardening leave. Quite literally. He has just got an alotment and is sorting it out. I saw another consultant, who reminded me a bit of Mr. Sulu from the original Star Trek series, in terms of voice and mannerisms. He was actually very cool and I liked him. I managed to avoid talking about Star Trek in case that triggered any bad reactions!
Anyway, after examining me, he said that there were two possibilities. One, I have a blood clot, which is restricting blood flow and causing the symptoms I'm seeing or, and this is what knocked me sideways, the Lymphoma has been regrowing. When I heard that, even though I knew it could be an option, as the swollen arm reminded me of some of my initial symptoms (swollen neck and face aka Mr Inflata-head) and my neck on the left has some swelling too. It looked like it could be caused by Superior vena cava syndrome (the superior vena cava is the major vein taking blood from the head, neck and upper body and arms. It flows through the chest and can easily be squashed up by tumours in that area), as it kind of matched symptomwise (and as I mentioned earlier, SVC syndrome was one of my early Lymphoma symptoms).
Even though it wasn't definite, I was still feeling gutted and shocked. My mind raced with thoughts of having nearly reached the finish line and then being sent back to the start again, with the prospect of hasher treatment to look forward to, with lowered chances of success. I then started to go really negative, scared that it might actually kill me after all and I'd never see my son grow up. It's horrible when your mind goes off on one! The cheeky blighter has been reined in again now, but for a good half hour or so, I was feeling quite distressed.
So, on Monday I am scheduled to have a CT scan. This will determine what the situation is with Mr Lymphoma. If the gods are with me, then the news could be great, in that the tumour has shrunk even more and is still on track. On the other hand, in the 6 weeks or so, since my last good scan and 2 cycles of chemo, it could have become resistant and started to regrow, meaning that my treatment plan would change. If the scan shows no regrowth, then I have an ultra sound scan booked in for wednesday, where they will check out my arm and neck, looking for any signs of blood clotting. So, basically, I'm hoping I have got a blood clot! Never thought I'd want one of those before.
My normal consultant is back on Monday too, so it will be good to see him and he knows my history better, so that may help.
Oh yeah, almost forgot. Until it can be show otherwise, I have to be treated as if I do have a blood clot (go on, have one), which means I have to have a daily injection of a blood thinning agent. Yay! A new injection.
I think they were a bit disappointed when I wasn't keen to inject it myself, so the district nurse is coming round to do that for me.

Anyway, so morbid moaning stuff aside, one thing I'm also interested in is film making. Although, since getting ill, I've not done much, my friend Paul recently reminded me of a little short film that my friend Rob and I made in January, so I thought I'd post it up for your viewing pleasure/pain.
The idea was that we gave ourselves 3 hours to come up with an idea, film it, edit it and have it done. The result is a bit rough around the edges in parts but was fun to do.