Monday, 30 June 2008

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!

Thursday, 26 June 2008

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!

Wednesday, 25 June 2008

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.

Sunday, 22 June 2008

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!

Saturday, 21 June 2008

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'

Thursday, 19 June 2008

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!

Tuesday, 17 June 2008

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.

Monday, 16 June 2008

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!

A scanner darkly...

If the title of this post has made you think this post is in anyway about the 1977, Philip K. Dick novel, then I must disappoint you. I was just looking for a title that featured the word scanner or scan and seemed cool. Sorry!

So, I've had the weekend to worry and ponder and it hasn't been too bad. It was father's day yesterday, so I was getting cards and presents and food etc, so that was cool. Today, there is a bloke in finishing off our fence (it was hidden behind an awful bush which we had removed). That's cool, as the fencer bloke is a good laugh and pretty laid back, but my next door neighbour is whinging and complaining about every aspect of it. It was because of her complainig about the fence (which we couldn't see) that we arranged to have it replaced. Now, she stands outside, watching the fencer every step of the way and then stops him and complains about some aspect of it and how e is doing it wrong or intruding on her property, etc, etc, etc, etc, etc, etc, etc, etc, etc, etc, etc, etc, etc, and then some more. I have to come out and calm him down as he was ready to pull her head off (he is a big bloke). So, there's that, which is nice and calming. Also, just had the nurse come in to give me my blood thinning injection (got to love those injections). She is lovely though.
There is also another bloke who is doing some tiling work in our bathroom. He is just doing his thing, but I can't help but wonder if the neighbour is going to find some way to complain about that. I guess she just needs to get creative.

I'm off for my CT scan in an hour. We got a new car the other day. We weren't going to. We were going to be sensible. But, the way the world seems to work, sensible can only be taken so far and then it's necessary to have a bit of silly. So, we went for it and got a new car (well, it's not new new, it is used, but it's new to us). We got an Audi TT, so I can whizz along to my scan and back, stereo on full, shouting as I go. So, however it goes, I'll be feeling pretty good!

Saturday, 14 June 2008

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.

Friday, 6 June 2008

Sat in the sun

Hi. It's a lovely day here. The sun is shining and I'm sitting outside (in the shade, as I burn like a petrol soaked rag right now). I thought rather than type a load of stuff, I'd post up a vid instead. I must admit when I played it back, I scared myself with my double chin. Where did that come from? I never had one of those before! I blame the steroids again (poor old steroids, get quite a rap from me).

Thursday, 5 June 2008

What a difference a day brings...

Blimey. It's amazing how different you can feel between two days. Yesterday I felt like a complete mindless zombie and today I felt so much better. Just a short post to say "Yay! I feel better today".

Wednesday, 4 June 2008

Worst day so far

Yeah, I really reckon today has had me feeling the worst since treatment started. Well, appart from when I had infections, I'd say that was the really suckiest of sucksville.
Anyway, my body decided to wake up at 4am and I was freezing cold and both my calves ached and kept cramping up. I tottered like an old man to the toilet, as my bladder, not wanting to be seen to be missing out decided to fill. I then couldn't get back to sleep, despite feeling exhausted. I lay there, rolling one way then the other, trying to get my legs comfortable and not cramp. My mouth kept going dry too, despite the fact that I was guzzling pint after pint of water or juice.
Again, I think this is steroid territory. I finished them yesterday, for this cycle and they don't like to not be invited to the party anymore.
Here's hoping tomorrow is better. Just need to be able to sleep all the way through tonight. We'll see. If not, then I foresee a whinging post tomorrow!

Monday, 2 June 2008

..and on the 3rd day, he got up

Well, after 3 days pretty much stuck in bed, I'm back and feeling more alive.
Looks like the effects of chemo are somewhat cumulative with me. Some people get away with it and some don't, then again, some are hit really hard, so I still think I'm pretty lucky.
I got chemo #6 on Friday and after getting the pre-meds for the Rituximab, I was dozing off and feeling a bit sicky. I'll tell you the worst thing. Around midday they bring out these snack boxes. Little cardboard packs with a sandwich, crisps, a drink, etc in. Nice idea. Sadly, I've developed an association to them and feeling sick (I'm not alone either, a few people I've talked to can't look at them without wanting to gag). So, beware. If you're getting chemo'ed, you can build a mental link to things. Urgh! Just thinking of the snack box now makes me want to hurl. Think of something else, think of something else... erm... Lost. Yeah, it was the end of the season finale last night. I hauled myself out of bed around 7pm, spent a bit of time around the kids and then watched Lost. I must admit, I liked it. A little saggy in parts but cool in others. Gradually things are being revealed, but enough is left submerged to keep me interested. Ooh, but I did like the end of episode cliff hanger. Ooh, yeah!
Anyway, back to the job at hand. Chemo 6 was a pain in the butt. So glad to only have 2 left. Can't wait to be done. Looking forward to being normal again! Assuming of course, the visitor that has been residing in my chest and round abouts has got the good sense to leave totally and never return. I'm working with the assumption that he realises he is not welcome and it's time to move on and judging by the response, that seems to be pretty reasonable. Still, waiting for the scan results after my last treatment cycle is going to feel like being one of the competitors on one of the reality shows awaiting their fate (winner or evictee) stood their during the extended pause after the host has said "and the winner is...".

A quick mention about CHOP-R (the chemo regimen I'm on). I have been asked if it is a one hit deal or whether you keep getting extras throughout the cycle. Well, a chemo cycle for CHOP, for me, goes a little something like this:
Day 1: You turn up, they plug you in and load you. Then release you back into the wild
Day 10: Go to hospital and give some blood
Day 19: Go to hospital and give more blood. Man, they like the blood
Day 21: Rinse, wash and repeat cycle.

So, there is only one day when you're dosed up, after that its recovery time. I know there are different regimes, where you go in as an in-patient or go and get loaded up for several hours and then get sent home with a chemo pump attached that continues loading you for upto 48 hours, but CHOP aint like that. I hope that helps.

Oh yeah, jumping around again. The last cycle I was given a set of 3 injections to boost my immune system. Basically they cause my bone marrow to get busy and start pumping out the good guys (white blood cells, Neutrophils specifically), to do honourable battle with any invading scum bacteria. In the words of king Leonidas of the Spartans, in the 300, "Neutrophils, prepare for glory!".
Anyway, it looks like this will now become a regular occurrence for me (At least for these last 3 cycles) as my poor wussy bone marrow keeps getting totally nuked by the chemo and taking too long to generate new fighters and needs a little help. Ah, poor chicken. The plus side is that this should mean that I will avoid getting any more nasty infections they lay me up feeling like doom and gloom and also that I get to meet more of the local district nurses who have really impressed me with their friendliness, caring and passion for their work. A great bunch.

Almost forgot to mention (blimey, this post is getting a bit big), that I saw the new Indiana Jones on Thursday night. Hmmm, what to say. It was Indy, so deserves some respect just for that, but, in my opinion, it wasn't a patch on the other films. A little too much trying to fill in back story and I reached the limit of suspension of disbelief way before the group fell off 3 massive waterfalls one after another, landing completely unaffected. Yes, I know it's fantasy and I know it's Indiana Jones, but I either need long enough gaps between impossible events to forget about them or a few less in order to keep my disbelief suspended. I think I preferred Iron man.