A public apology

When discussing uncles and aunts and cousins I saw the other day, I somehow completely failed to mention my aunt Caroline and my cousin Alex, whom I also saw! And I did so after they'd come all the way from Australia! I apologise to them and can assure you they are lovely and it's great to have them here.

Nudity; tattoos; graffiti; lines...

Those of a nervous disposition, those who do not care to see my nude torso and those whose constitutions cannot handle the sight of a tube entering a chest might not enjoy this post so much. Having visited the Marsden in order to discuss my TBI (Total Body Irradiation), give my consent for it and take the first step in the planning of it, I decided the best way to give you some information would, of course, be to take my top off and show you where I'm at. The last picture I posted didn't really tell 1000 words, but these should be a bit more informative. Here, therefore, are a couple of annotated pictures:


Key

1. In the centre of these two crosses are tattooed dots - I'd never planned to have any tattoos, but life takes unexpected turns...
2. The crosses were used, with x-rays and lasers, to work out where my lungs are and measure the distances in preparation for the radiotherapy.
3. This is where my Hickman line enters my chest, and then bloodstream.
4. These two lumens provide easy access to my bloodstream, to take blood out and put things in (eg hydration, chemotherapy, blood products, antibiotics) through my Hickman line.
5. This is where I had my PICC (Peripherally Inserted Central Catheter) lines - hence the scars.
6. Love-handles.
7. My hair's growing back, though it doesn't seem very thick yet. The radiotherapy should make it all fall out again.

The planning today was to find the spots where they will measure me up to find out what doses of radiotherapy I will need. The lungs are the most sensitive to it, so the dosage is based on what can be done without damaging them. The crosses were just for measurements, so I'll now wash them off, but the tattoos are permanent, and will provide the starting points when I do get measured for dosage (on Friday 7th April).

If you're a fan of lines, as I am (getting a new one is always like getting a new toy, which is why I didn't really mind having four different lines within a few weeks at one point), you might like a better look at the Hickman, so here it is.

The scar just above the curled tube is where the line specialist (the lovely Michaela) first put the tube into the vein, before tunneling it back to where it comes out...I think. I was a bit confused about that bit, but anyway.

The dressing gets changed regularly and means that I can have showers without ruining it; it also of course keeps it protected from the scary outside world of bugs etc.

I can't remember whether I mentioned that photos of me having the Acute Central line I had (similar to the Hickman but not quite as serious, I think) put in might appear on a poster at some point... What fun!

In brief

So, Friday. London. St George's. Blood test. Quick. Ferrari's. Tomandalice and my fazher and Fred. Results fine. Haemoglobin 9.9. WBC 2.5. Platelets 191. Neutrophils 1.1. Bone marrow harvest=4th April. Into hospital 3rd April. Radiotherapy=6th or 12th. Will know tomorrow (Monday). To Marsden probably still Tuesday 28th. Then blood tests @ St G's again.

Saturday. London. Stamford Bridge. Two uncles (many thanks to Uncle Philip for football; also to Uncle James for travel); three cousins (Jess, Grace; Peter). Brief hellos to two aunts (Hilary; Ann) and three more cousins (Nina; Rachel, Hope) at various moments before match. Wonderful hat from Singapore - thank you! Chelsea 2 - 0 Man City. Good 1st half. Slower 2nd half. Long day but fun.

Today (Sunday). Mass @ Bosham. Commended on singing. Well, on volume of singing. Tired, stayed @ home. Father, brother, sister to Grandma and Granpa and Haslemere cousins. Slept afternoon. Finished 'Arthur and George' (Julian Barnes). Excellent. Lost capacity for sentences.

No room at the inn

We've filled up the house this evening, as Freddie's Laura is here, Tom and Alice have come for the night, and Sue then appeared too! Dinner was very entertaining, as everyone seemed to be on good form, and at least twice it all descended into those great moments when you simply cannot stop laughing...

We had some good singing, too. Hurrah! And some from Tom...

Tomorrow we're heading up to The London to check my bloods etc, maybe to plan my bone marrow harvest too... I'm not sure who's coming, but I think I'd better.

Stinky stupid stem cells

I return home today (NO TELEPHONING THE HOSPITAL!), as my stem cells haven't been produced in decent enough numbers to bother harvesting them, and I shall have to return to St George's some time later for a bone marrow harvest instead. With general anaesthetic. It shouldn't be too bad, but it's frustrating not to have got it done, and I hope that what they get from the bone marrow harvest is no worse than that from a stem cell harvest from the blood.

Incidentally, I was on telly last night. 'The Hole' was on Channel 4 - I'd have warned you sooner if I'd known, but I didn't so, erm, I didn't. My five seconds of glory as a drug dealer did not go unnoticed, though! I've been inundated with messages from people asking whether it was me. Actually, only one message, but still.

Fred's on his way up to pick me up in... the pick-up! My dad bought it very cheaply and it's a beaut. A beaut of a ute, as the Aussies might say.

Swing oh-so-low

Yesterday I continued to make the most of my freedom and went chez Gladwyn for lunch, followed by a lovely walk around Cannizaro Park - all lovely. Then I squeezed through the throngs in a pub in Clapham to find my ginger friend Charlie, who has decided he's Irish, at least for this Six Nations. Unfortunately most of the rest of the pub were pretty Irish too, so it wasn't the best place to be an Englishman as we got beaten and ended up 4th in the table. Oh dear. On the plus side, we can only really get better, and it was good to see Charlie and meet a few of his friends, who weren't ginger. Even better, Pompey beat West Ham 4-2, so we're on a roll and might even avoid relegation! Hurrah!

Today I missed Mass (thinking it was at 11, when it was at 10), explored Tooting High Street a little further, bought some socks and ate some lunch. Am planning to head out again soon, but I'm waiting on a phone call first...

All in all, it's a pleasant weekend, though it'll be nice to get this harvesting out of the way and hopefully get home asap - I'm not really looking forward to my 4-5 weeks in for the autograft but before then can't wait for the wedding.

Short of stem cells

Am still very tired from all the excitements of the past few days, but before going to bed I just thought I'd give a quick update: I had a stem cell harvest today, but it wasn't as productive as it could have been, so I'm having another one on Monday. If that still doesn't get enough, they might have to get cells from the bone marrow instead (shurely under anaesthetic?), but there we go. I am still in hospital after all, and in the same room (ext 2568), so you can ring me here!

I must go to bed... zzzzzzz

The Chairman has retired... Long live the Chairman!

Last night was wonderful: Adam "Spuds" Fudakowski was elected Chairman of the OMV (I had seconded his nomination and helped him a little bit with committee details etc), Jo "Djo" Dowbekin was elected as an Elected Member (I proposed her... no no, not TO her, I mean her nomination... oh nevermind) and lots of of my lovely beautiful wonderful amusing friends were there. Naturally everyone tumbled into the pub afterwards, where I enjoyed my first real evening out in about five months... It was just so good to see everyone and I wish the evening could have lasted longer.

Today the RMU is quite keen to requisition my bed for someone else's use, as I don't really need to be here and they're a bit desperate for beds, so I'm abandoning my room: DO NOT PHONE ME IN HOSPITAL! I'm staying at Will and Caroline's down the road, as I need to be back by 8:30 tomorrow morning to see how the bloods are and to hopefully get harvesting. If I'm not ready, I'll probably go home for the weekend and return on Monday...

More soon.

A quick update

They counted my stem cells today (1, 2, 3, 4... 7326, 7327... yawn) and they're not numerous enough yet to harvest, so it looks as though that won't be until Monday (I'll be here and expecting your visits until then). Meanwhile, I'm going to pop into London this evening for the OMV AGM! Cool. I promise I'll be careful and not over-exert myself.

A Call to Arms

Some of you might be confused, as I had been half- (well, three-quarters-) expecting to go home today, but I'm still at the Hotel St George (excellent facilities, easy transport connections, friendly staff, 2am alarm calls). I have, as previously mentioned, finished the chemo, so there's not too much going on, apart from the GCS-F, which I think is why the doctors want to keep me in: rather than send me home and have to get me back to check my stem cell count, send me home again, get me back again, etc, they're keeping me here until my stem cell harvest. I think it's actually because they'd miss me too much, but don't tell Dr Al-Jehani I said that. The sentimental old booby. Anyway, the mention of hotels is apt, as Samar has told me to treat this place like a hotel, since my neutrophils are fine and there's no reason to keep me locked up in my room, let alone in bed. So I've thrown the TV out of the window, left my towels on the floor and stolen the soap.

Actually, it means I can come and go as I please, including going out into Tooting, and perhaps even further; I can go out for meals; I can even go out overnight. So friends, roamers, countrymen who have strayed into the city please come and see me if you're bored, or come with me to Ferrari's or somewhere similar, or whatever. I'm surprisingly energetic, but not at full speed, so bear that in mind. It's mainly Tuesday and Wednesday now probably, though if my stem cell count isn't up in time for Thursday, the harvest won't be until Monday, so then there'll be plenty of days to fill. I'm here! I'm here! I've even been wearing clothes...

Big love to all.

(19 days until we manage to ditch Tom!)

Why so good, huh?

In case you wondering, yesterday was great because:

• My methotrexate level was negligible and thus effectively out of my system
• My Intensification Phase was therefore finished
• My main chemo is now therefore finished (though there's serious chemo as part of the autograft, and quite possibly some chemo afterwards too, but let's not spoil the mood)
• I was therefore also unplugged from the hydration etc
• I was therefore free again
• I therefore no longer needed folinic acid
• I therefore no longer needed to be woken up quite so often during the night
  
• The pH of my urine no longer needed testing
• I no longer had a headache
• I no longer had diarrheoa
• I felt good
• I barely even felt the growth factor injection (unlike the first one)
  
• Jo visited me
• I had spaghetti carbonara (from Jo) for supper
• I spoke to some lovely people on the telephone
• Erm...
• That's probably it

I'm not normally the type to fling thumbs-up across the interweb willy-nilly, but I figured that my blog had been disarmingly unillustrated for a while, so this way I could capture the essence of the moment AND decorate the blog, even if it did leave out a few details. If you haven't read the comments attached thereto, then do. I'm still stuck on the cuticles.

Today in 1000 words

Well, it's not meant to be easy

Despite my claims that I would be posting my often from within hospital, it's now been a good three days since I last did so, but I do have an excuse or two...

Thursday was of course the jour de methotrexate, kicking off at a sprightly 4am with hydration, and also saw me wander the hospital corridors to visit the departments of Nuclear Scanning (I'm sure there's a joke in there) and, erm, Lungs (or something more professional-sounding). The scanning just involved some fluid being injected into my blood; samples were then taken two hours and four hours later to see how my kidneys were working. As usual, I'm at an utter loss as to how that shows what my kidneys are up to, but anyway. Sadly the methotrexate was flowing and couldn't be stopped, so the blood had to be given peripherally, but that was a minor inconvenience. As for the lung function test, the wait was too long, so I had to rush back in order to get started on my methotrexate (the timetable of which is very carefully planned) and didn't get it done.

Then along came Friday, and the methotrexate finished, with no discernible problems, though I was v tired after a couple of nights with less sleep than I'd have liked. The doctors did their ward round and took varying stances of taking-the-mickey and leaving-me-be ("it's not the army) for my desire to stay asleep and in my bed. Then, oh joy, the final asparaginase! Just to make sure I wouldn't forget it easily, this injection seemed to hurt even more than normal, so I hopped around clasping my buttocks for a while. Little did I think that the asparaginase had one last attack to deploy!

It seems that occasionally, asparaginase can cause a reaction: I had never had a reaction to it before, but about 10-15 minutes after the injections I got up from the loo to discover my face going very red as blood rushed to it. I also felt a bit wrong, so I went to have a lie-down, which didn't really help much, until just as a nurse happened to come in my stomach really started giving me some grief, so I dashed (as much as possible when you're plugged into a drip) to the loo, dropped to the floor to be near the toilet bowl, and fainted. Next thing I knew, there were several nurses and perhaps a doctor or two helping me into a wheelchair to take me back to my bed, whereupon I shook and sweated (I was soon drenched), felt rough and tried to work out how many different bits were hurting. I thought I needed the loo again (nasty diarrheoa made that perfectly plausible) so was given a bed pan, but realised I was actually going to be sick instead just in time for the nurse to bring sick bowls. So that was the end of my breakfast as far as my stomach was concerned, though fortunately it did bring a little relief. With a bit of time I started to settle and fortunately began to feel a bit better. As I recovered, various nurses and doctors either came in and checked up on me, or poked their heads around the door to say "you gave us a scare there!" or "what have you been up to?!", but I soon zonked out and went to sleep. For about 7 hours on and off.

After a few hours I still had a really bad headache, but otherwise seemed much better - Samar had already told me that the effects could last several hours. Daphne (the ward sister) said she hadn't seen that happen for a very long time, and it was explained to me that just because I hadn't reacted to it before didn't make me immune from doing so this time. Fortunately, of course, it was the last dose of asparaginase - I don't know whether they would have had to rethink otherwise; either way thank goodness there's no more of that to come! It's also now nothing to worry about, as it was just a reaction at the time and there's nothing long-term affected: as soon as it finished it became a closed issue.

It was pretty scary, to be honest, having no idea what was going on or why it was happening. I was lucky that the nurse had happened to come in just before I had the main reaction, and I did feel much more secure as soon as I was back in bed with doctors and nurses looking after me. There's always a slight worry when there are lots of them, though... But when they're calm, it calms the patient down enormously, and they were never anything but calm. The truth of the matter is that I just fancied a bit of attention, of course, so thought I'd stage a bit of drama. All fun!

Last night I slept well enough when I wasn't being observed or given folinic acid, but unfortunately that wasn't very often, with things happening at 1, 2, 4, 6, 7, 8... I had a bit more of a lie-in today and it's been relatively quiet, though the first growth factor injection in my belly was more painful than I'd expected.

I have a bit more knowledge of dates, but will write about them elsewhen.

(Curse the Asparaginase!)

Toot toot... hang on, what's that needle for?!

So here I am, back in room 9 (phone: 2568) of the RMU at St George's. I had a brief sojourn in room 2, but the kindly nurses moved me when somebody moved out of here, knowing I was rather fond of having the interweb at my fingertips (the wireless signal doesn't reach room 2). So that was close, but now I'm back online: hurrah!

We lunched at Ferrari's: yum yum etc. Interestingly, I've been there four times, have always been with my father and one other (Tom, Alice, Harriet, Sue), and have always sat in the same seat at the same table. A creature of habit, perhaps? It still comes much recommended, though I had the painful dilemma today of whether to go for the Insalata Caprese (I think they called it something different, in fact, but anyway), which of course had buffalo mozzarella, but was only a starter. Wanting to make sure I had a decent-sized meal before returning to the joys of hospital food, but being a little pressed for time (shurely not my fault for not getting up early enough?) and yet not hungry enough for a starter and something else, I had to let it go... Sniff sniff. Maybe next time.

Talking about pain (it was a painful dilemma, remember?), I got to the hospital, waited in room 2 and soon the doctor appeared, declaring that he was going to do a bone marrow test pronto. Agh! Bone marrow tests, in case anybody has forgotten, huuuuuuuurt. So he went and got the enormous needles etc that he needed, and questioned upon his return, "So they didn't tell you about the bone marrow today?" I think that was best though, as otherwise I would have been dreading it: instead I only had about ten minutes to remember and fear how much it hurts. Since the anticipation is often the worst part of pain, that was good news. What's more, I didn't even pose the question of whether or not I could have sedation, because I figured that would be more hassle for Samar (the doctor) and I knew it would be over soon enough. I was even - bizarrely - quite interested in just how much it did hurt, since the last unsedated one I had was ages ago.

The test reminded me that it does really hurt very very much. But perhaps not quite as much as the first time (they didn't need to chop off bone this time, which makes a difference), or at least as much as I remembered. Perhaps it's because the first one grew even more painful in my memory, or perhaps I'm getting a bit more used to pain. Certainly I felt remarkably blasé considering it might be my least favourite thing in the world. Let's not get carried away, though: it still might be my least favourite thing in the world.

Actually, forget that. Hospital food wins hands down. I was hoping I might be ready to eat some of it again this time, but I couldn't even smell it without losing all desire to eat and gaining a great desire to throw up instead. Yeugh. Though I suppose if somehow a bone marrow aspirate magically could fulfil my nutritional needs (or at least, as many of them as hospital food does, so perhaps not many), it would be a close call as to which I'd go for. Probably the food, as my pelvis is still sore and I only didn't die of pain because I knew I wouldn't need one in the too near future. I hope. Food still wins, though, perhaps because it's so constant.

So, I'm online, I've watched The Apprentice and I've even had my first guest! It's been a fairly busy and interesting day, all in all. Tonight I'll get hydration (perhaps with bits in: I forget) from 4am, and tomorrow I have the methodrexate, an anti-PSP (type of pneumonia) inhalation, as well as a few bits and bobs to check my heart, kidneys and lungs in preparation for the transplant.

Gosh, I'm actually a terribly busy man. Guests and calls still most welcome, though not the former without the latter first please.

St George's here I come... again

It's a bit late and I ought to either be sleeping or packing, so I'll keep this brief. Tomorrow (Wednesday) I shall return to St George's to finish off the Intensification Therapy. I went up on Monday and Laura (the transplant nurse) ran around like a mad thing ringing up to book me in for tests and sending me hither and thither to have all sorts of things checked, including my blood, teeth, heart and chest... More tests to come when I'm back in, and they'll be worked in around my final dose of methotrexate on Thursday, final dose of aspariganase on Friday, and of course the folinic acid etc while I am being attacked by the methotrexate.

On Saturday I'll start having growth factors (G-CSF), which I will have to give myself (or get my Dad too, but I'd rather enjoy the challenge myself - more about that later) when I'm let out after the methotrexate has gone from my system... That'll probably be around Tuesday 14th March.

Hopefully I'll have a room the wireless signal reaches - I'll post asap if I do! Failing that, I'll at least get someone else to post to let you know my new phone number. I really do hope I'll be online myself, though, particularly as I have a lot more to say when I'm in hospital; or at least, I'm more motivated to say things. Home -> rest -> lethargy -> not much blogging...

Now we're getting there

The trip to the Marsden on Tuesday wasn't really much use, to be honest, as they hadn't managed to receive all the information they needed, and as I hadn't seen Dr Dalley at that point I didn't know anything about what dates he was planning for my autograft... I'll be having radiotherapy at the Marsden as part of the autograft (that and high dose chemotherapy will knock out my bone marrow completely), so a doctor took the opportunity to tell me all about it and let me know the potential side effects. In the short term the effects are much the same as for chemo (nausea, diarrhoea, hair loss etc), though in the long term there are some novel things that can go wrong.

If I were ever to sit down and list (or even think about) everything that could have gone wrong or could go wrong, I would just be overwhelmed... So once again I'll just take it as it comes, and get through each bit at a time.

Yesterday I saw Dr Dalley (the transplant consultant at St George's) and now know a lot more about the autograft. He was brilliant: calm, pragmatic, clear in his explanations and friendly. In short, this is the plan from now:

• Monday 6th March: Blood tests so that Laura (the transplant nurse at St G's) can do virology tests. Also probably a chest x-ray and ECG (cardiogram to check my heart's ok)
• Friday 10th (?): Final dose of methotrexate, and all that jazz.
• 10th-20th: Growth hormones (GCSF?) to encourage my stem cells to grow more than normal.
• 20th or 21st: Stem cell harvest (line in each arm, or perhaps elsewhere; blood comes out, gets spun in a machine, which takes out the stem cells; blood gets returned to me - thank you very much Mr machine). Then home?
  
• A few weeks later (?): To St George's, then to Marsden for radiotherapy (either one load, or fractionated into 8 loads spread over 4 days), back to St G's for chemotherapy. Dangerous time as I have no bone marrow at all and am at serious risk of infection and bleeding.
  
• 2/3 days after chemotherapy: Stem cells dripped back into my bloodstream.
• 2 weeks later: Stem cells reach bone marrow and my immune system will hopefully start being able to fight infections etc again.
• Another 2/3 weeks later: Home, as long as all has gone smoothly...
• Possibly a bit more chemotherapy.
  
• Another few months later: Back to something like full strength.

Dr Dalley explained everything, so if I've forgotten something or you wondered how part of it works, do ask me and if I don't know I'll try to find out. Everything has to be done at its precise time (though as you see I don't know exactly when some of those precise times are), but it's looking as though there's a good chance I'll be out for Tomandalice's April Fool's wedding; unfortunately Easter and Graduation are looking much less likely.

Anyway, must go - Harriet and I have started the first season of '24' - we've only reached midday so far and it's far too addictive. We started the day before yesterday... who ever claimed I never do anything useful?