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!

It be harvest festival time!

Last week on Monday evening, I got a call from Hammersmith hospital saying they had a slot free on the magical mechanical stem cell machine and could I get there for 9.00am Tuesday.  I checked with Ma-in-law who would be driving me and she said yes, but we'd have to leave at 7 (2 hours, not bad for a  14 mile journey.  We love you traffic).

So, I get there.  Unfortunately dropped off at the wrong end of the hospital but my hobbling is improving and I hobbled it ok.  I meet the docs and nurses, all seem a nice bunch and then see the machine.  It was definitely circa 1985, lots of spinny bits and relays.  Very retro!

They entered my details and it recommended me being attached for 5 hours!  The nurse operating it looked a bit bemused and said it didn't normally ask for that long (I just knew it was part of the conspiracy to make everything take ages in hospitals).  So, they hooked me up from my Hickman line to the machines output, but needed to put a canula in on my arm for the machine to take blood.  Okay, fair enough.  At least until I saw the needle they were going to use.  The nurse walked up holding what looked like a knitting needles older and bigger brother.  I looked at it and wondered what was he going to do with then, when STAB!  It was in me.  I yelped like a guide dog that has misjudged the traffic and just bounced off a bus.  It was huge but thankfully it had found a good vein.

So, 5 slow hours pass, each of which the nurse had to remain with me, checking me and the machine.  I leave, with the warning that if the stem cells collected are not enough or of a high enough standard I may have to come back the next day.  I started to deflate, but crossed my fingers instead and left.  

I got home and began to slip, slide and hobble out the car when my phone rang.  It was the doc from the hospital.  He said all was good, in fact I had produced 4 times more than needed.  Hurrah!  Go stem cells!

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!  

Oh Crap! Bad News!

Well, I went in to see the consultant today. I was pretty anxious, as I've been noticing dodgy little symptoms, similar to what I had at first diagnosis. Shortly after going in he told me that the news wasn't good and that the scan showed that the tumour had been growing again. The bastard! Why can't it just die!
Anyway, this means it's plan B (sadly there are no plans C or D, so plan B better work!). This involves going into hospital (where I'm heading shortly), where I'll get a line put in (a tube in a vein) (which I'd been hoping to avoid). Then there will be a 3 day chemo infusion. This regimen is called RICE. My last one was CHOP-R. Then it's 3 weeks off, then back for another RICEing, then 3 weeks off. Then there is a scan. If the tumour has shrunk, it is on to step 2. If it hasn't then...oops, sorry, we're out of ideas. Bye. Don't like the sound of that much, so lets assume it works. Next is a loads of injects to get the body producing extra stem cells which can then be collected. In to hospital then for 4 days of hardcore chemo. This one will blast away my poor immune system and bone marrow that would regenerate it. Hopefully it will also nuke any remaining tumour. Then the previously collected cells are returned and they magically recreate a brand new shiny immune system. Hoorah. Apparently the success rate isn't amazing but it's not rubbish either, but I need to talk to the big man total specialist dude to get those details. So, the boring journey continues. Not sure when I can post again, as hospital beckons.