It's Just A Bit Aggressive

Last morning I woke up with a husky voice, today none at all.  I could make gruff noises, whisper quite coherently but not talk, at least not in human.  I think this gives an idea how aggressive this thing is.  No small change every few days.  The radiotherapy doc noticed that the tumour has increased significantly from the scan he saw barely a week ago, so have moved the radiotherapy forward to this Monday.  I'm quite happy with that as I want it zapped.  He is worried about the amount of radiation its going to take to have a chance to clear the left lung (I think it is the left one).  There isn't any choice really.  Unless the main mass shrinks, it'll have burst out my chest aliens style before there'd be any chance of being ready for the stem cell procedure.  My current set of doctors/consultants at Wexham just seem to want to keep me down.  I had to go in today and give blood.  I was hoping to see my normal consultant, who the consultant/doctor dude from Hammersmith, who we saw yesterday, would have got in touch with and brought up to speed and set on the task of coordinating donors.  Anyway, he wasn't there and I got to see another doctor, she was okay until she started talking about all the different things that could go wrong before even getting to the stem cell transplant and that it was very low chance statistical that I'd get there.  Bloody marvellous.  I think I'm only going to listen to the Hammersmith doc.  So far this week I've spoken to three doctors.  Two from Wexham (first of whom depressed me so much I broke down in tears in their office), the Hammersmith doc who filled me again with hope yet tempered by the possibilities, risks and dangers and a final Wexham one who pissed me off again.  Just tell me the path is fraught with potential issues and dangers and leave it at that.  I don't want "very low chance statistically".  One sounds hard but worthwhile, the other sounds like "give up, you're wasting your time".  Argh!  They make it so hard to remain positive and focused.

Hope Springs From Your Siblings Blood!

We had an appointment today with a doctor in Hammersmith hospital. I hassled my consultant that I'd like to see him, based on the fact that he suggest my last chemo when everyone else was out of ideas. My consultant contacted him with my details and I made an appointment for 10.30 today.
I was nervy all night in case my voice was going to disappear forever and slept elevated and anything else I could think of (it was when I was not elevated at all that it happened. So, clutching at straws, but you never know!). Strangely, I woke up feeling pretty good despite a 38.6 temperature.
Things were manic, just as they are most mornings in our house, what with kids to get ready and drop off at appropriate places. Time was ticking and it looked like we would be late and then Harry caught his foot and fell on the step as we were heading to the car (he was okay and more worried about the toy he dropped, I almost filled my pants when I saw him go). We dropped him off, then entrusted ourselves to the mighty SAT-NAV. According to the ETA, we would arrive bang on time for the appointment, so if parking was easy and we were right next to the clinic we'd be a couple of minutes late, so all good so far. We hit some traffic and my heart fell, but there wasn't much and my wifes majestic driving (eek!) got us ahead of schedule without triggering traffic cameras or getting traffic police on our tail, so all good. We got there and to reception bang on time, then were kept sat waiting for half an hour. Typical.
The doctor came out. He was smartly dressed, i.e. shirt and tie, but somehow managed to make it look a tad dishevelled, but hey, I was more interested in what he had to say and whether it was just the same of rubbish.
He went through my story so far and sympathised (I started to think he was going to say, nothing we can do). He then went through the various options normally used. He said because RCHOP, RICE and ESHAP chemo have failed, it is highly unlikely any other regimes would work, so chemo was not really a viable option. He said the radiotherapy was a good idea and that media stinal tumour usually respond very well (much more positive). He said the only other option was a stem cell transplant. This would involve high strength chemo, then adding back in stem cells to rebuild the now battered immune system. He then said that it was highly unlikely that would have an effect. I thought this was where he was going to offer to do it, but just for the sake of doing something and maybe, slim slim chance, might work a bit. I felt my heart start to dislodge it self and get ready to drop, but then there was a "but". I like "buts" in there situations. He then went on to say that in this situation, the option with the best, real chance of eradicating (I liked the use of this word) the tumour was to do stem cell transplant, but not use my cells. So, it go as before, but instead giving me back my immune system, I'd get someone elses (how romantic). The idea being that the new immune system sees the Lymphoma as foreign, something mine hasn't done, and lays into the bleeder. The chances of success are not amazingly high, I think 35% was guesstimated, but that's better than what was on offer (0%).
First step is to find a matching donor. The best and most compatible are siblings, with a 1 in 4 chance of matching (so sisters I'll be asking you soon if you fancy throwing any stem cells my way). If not then they will search for a match in the UK database and I am told it is usuaully easy to get one. The thing with a sibling donor is that there is less chance of nasty things happening at the beginning, which is slightly riskier with a non-sibling donor. So the risks for me are very real but not as bad as the 100% risk otherwise. So I'm excited. There is a new plan and it is progressing. The only danger is that the new little nodules will be left to there own devices, so the hope is they do not become troublesome!

Panic and Raffles

I've not written a post for a while again, I know, I'm a very bad person.  I'm finding it hard to get motivated to do things, pretty much anything, including getting out of bed.  I just feel tired, tired and then a bit tired.  It hasn't helped that I've had a cold on the go too, which has left me with that annoying ear thing, where whenever you speak it sounds really loud in your head.  I keep saying, "what?" or "pardon?" to anything said to me, as I can't hear a sausage!

I've also been worrying like some custom built worrying machine.  Has the tumour shrunk at all?  It's had a cycle of the new chemo and I'm in cycle 2, with a scan next Monday.  I keep thinking I'm noticing small symptoms that I had before, which I then use to conclude that the treatment has failed and then panic that I'm out of proper options.  Not a good place to be.  Luckily, I don't stay there too long, but the slightest thing seems to get my mind back there.  I know the chances aren't that high that it will work, but come on, I've never won hardly anything on the lottery and whenever there are raffles, I never get a sniff in.  When I was little I used to go with my ma and pa to the British Legion club, where they would go dancing and have a few drinks and I'd sit and be well behaved drinking coke.  There was always a raffle.  I think in all the years we went, we won twice!  Although, there was a family who seemed to win every other week.  Hmmm, sounds like a fix.  Legion raffle had some pretty good prizes, you know!  Anyway, I reckon I should have earned a bundle of "luck karma" and should now be able to spend it!  I just need to know who manages such things and how to get in touch with them.

Wheelchairs and Scanxiety

Stupid temperature!  After 24 hours of it behaving, it decided to ping up again, but its back down now and I'm feeling pretty decent appart from the stomach twisting fear of scanxiety.  I've mentioned scanxiety before (sadly, not my own term, but if no one comes along in the next 30 days with proof of original invention of it, then I'll claim it as my own, damn it, and fight till the death to defend it, hurrah!).

Anyway, why am I feeling scanxiety?  Duh!  Cus, I've just been scanned (some people are so slow, really!).  I was woken up at 6, as per usual.  Blood pressure and temperature were taken by one nurse, who then disappeared to be replaced by another who made sure blood was taken, magic liquids from the hospital apothecary were infused into my line and the normal hospital approved dark rituals were performed, the usual sort of thing.  Then I was left alone for a bit.  I dozed off for about 30 minutes and was awoken by the breakfast trolley.  Not literally by the trolley but by the nurse in charge, who was trying to determine if I was awake (and so should be quizzed about breakfast preferences) or alseep (so she could sneak away, one less ingrate to deal with).  I said "hello" and after a short negotiation was handed two weetabix and left to eat them.  Blimey, it's all excitement so far!  I'll try and calm it down a bit.  

To cut a long and not very exciting story short, I fell asleep again (something I'm getting pretty good at) and was awoken by a rather sturdy looking dude hollowing in through my door.

"Can you walk mate", he asked.

"Not amazingly well, but I can", I replied, wondering what I was getting myself in for.

"I've come to take you for a CT scan.  They said to bring the bed, but if you can walk a bit, then we can get a wheel chair", he replied.

I was a bit confused.  Why would I need to walk so we could get a wheel chair, but apparently wheel chairs are like gold dust and some of the other porters have hidden stashes of them for their patients.  So basically, we'd have to walk the route, hunting for wheel chairs.  Now, unknown to most people, the wheelchair is not a social animal and prefers to spend its time alone, roaming the corridors.  They are however, well versed in urban camoflague and can be aggressive if approached head on.  So, we set off.  After walking down the first corridor we had a sighting.  I could feel the excitement of the hunt.  There it was, in its natural environment.  Beautiful and unfettered.  Graceful even.  My porter approached, keeping to the corridor walls, trying not to spook it.  His obvious experience in such matters coming to the fore as said wheelchair was quickly captured and loaded (with me).  We then headed to the CT scan department.  Unusually there was no queue of faintly miserable people, just me (the wheelchair) and a bloke in a bed who was asleep and very very pale.  I was whisped in very quickly.  Normally they have wanted to put contrast into my vein to show up blood vessels etc, but not this time, just bang on the table, in and out of the machine and bosch, thank you very much.  I felt a little used.  Anyway, a porter was rapidly on the scene and I was quickly back in my room.

Now is the scary bit.  The CT scan will show whether Mr. Tumour-face has shrunk or not.  If he has then things will continue on plan.  On friday will be the final RICE (thank the lord!).  If it has not shrunk, then it will show the little sh*t is immune to chemo, which will be bad bad news, as that is the main weapon they have.  Kind of like saying the enemy are immune the bullets and explosives, Mr President.  That gives the president a bad day.  So, I'm hoping hoping hoping the bast*rd has shrunk, otherwise it goes a bit Pete Tong.  A time for experimenting with mercury and infusions of sycamore root.  Eek!

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!