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!

Zombie day again

It seems to be pretty standard now. A day or so after I've finished the steroid part of the cycle (first 5 days) my body goes a bit doolally. Throughout the day I get a really dry mouth and then after drinking something I need to pee urgently and on it repeats. This isn't too bad except at night time, when I keep waking up with a bladder set to erupt and a matching dry mouth. So I empty the bladder and have a drink but know its only a matter of time before the bladder will reannounce its presence. Tends to mean I get pretty bad sleep. Anyway, that's probably more than enough about my water department management - post steroids.
Today, I just felt like Dr Tired, that evil, but slightly slow moving and yawny arch super crimal. We are having some work done on our bathroom, so I had to get up and lounge around until they were done. About lunch time I hit the sack again and finally emerged about 7!

Released into the wild

I got released from hospital last night.
I went in on sunday, to A&E, with a temperature of 39c. I was taken in and a lovely doctor checked me out and put in the usual needle. Blood was taken and I was given IV anti-biotics.
After a few hours, my blood results came back and I was not neutropenic, but I had an infection and they were going to keep me in. After some more loitering, I was taken for a chest x-ray, which came back clean and I then got allocated a bed.
Didn't sleep too well first night and still had a temp the next morning, when woken up at 6 to have blood taken!
Time there pretty much involved: several hospital meals (which actually weren't bad), lots of IV fluids and trips to the bathroom - dragging a top heavy squeaking drip stand which wanted to fall over (had to more or less waltz with it to keep it upright) and taking of more blood.
Finally, after tracking down a doctor, I asked when I could leave (if I hadn't I think I could have just stayed as long as I wanted). They said that they did not know where my infection had come from and probably wouldn't let me go until they did. After a bit of negotiation and several more hours they said I could go but would need to come straight back if I felt unwell again.
I forgot to mention, while I was in hospital my left hand swelled up. Most likely due to the blood clot but it looked like the false hand of that bloke in the comedy bowling movie Kingpin. It looked fake and kind of freaked me out when I saw it out of the corner of my eye!
Anyway, I'm back home now. Just had the nurse over to give me my latest fragmin anti-coagulant injection (ooh, sweet). The one good thing about being in hospital this week was the constant fluid from the drip meant that I havn't had the steroid dry mouth/dying to pee thing going on...oh, until now. Back in a mo.... There, that's better. Need another drink now though.

off to a and e

posting from phone. felt poorly today. clot arm has been hurting and legs a bit crampy. temp up a bit earlier but now its 39 which means hospital. Yay!

chemo 7 - the penultimate one

just a quick post as i'm writing it from my phone.
chemo 7 yesterday. It went ok but left me really tired and i came home and slept several hours. The staff there were all pleased about my scan results. Turns out there were a few of them checking the results when they arrived and a sense of relief when it showed no regrowth. Bless them all. Many thanks to everyone who sent me supportive messages. As Tesco (or is it Sainsbury) say 'every little bit counts'

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!

New Word

I've just discovered a new word, which I kind of like and which is especially relevant after the last few days: Scanxiety
I think it sums it up perfectly!

Anyway, just a short post. I'm waiting for the nurse to arrive to inject me and then I've got to go to hospital to restock on the lovely pre-filled syringes, for my continued de-clotification.