mattp: (Default)
I seem not to have updated for a while (again). Oops.

I meant to post this yesterday as it marks the 4th anniversary of being given the all-clear from my health scare back in 2004.

I've accomplished so much since, and intend to achieve so much more.
mattp: (gataca)
Lightreaders of or newcomers to my journal might not be aware of my late 2004 health scare. (Summary: had a tumour, got given the all clear, was on TV about it). I just had a phonecall from a journal who wants to write a magazine article on Neurofibromatosis, and she'd been put in contact with me. I was looking forward to it because it's a differnt media and much easier to control the content. In the end we decided that I wasn't suitable for the style of article she was writing, but she might well have something suitable coming up.

ION I have much to write about, but shall wait until I have more time than just a lunch break to invest in writing a detailed post.

— — — 


Might as well, since everyone* else is doing it:
My Valentinr - matthewp
Get your own valentinr
mattp: (eye)
Got a text message from [livejournal.com profile] bethanthepurple earlier today who happened to be visiting London, so we met up wandered the streets for a bit, had a bite to eat and then headined into town.

En route we met [livejournal.com profile] alienfox so I prodded him for details of the then-forthcoming gathering chez lui.

In town I we wandered up to cybercandy going via
a junction called Seven Dials. I'd taken a few photos of it before over recent days, but it had been raining and the photos weren't as good as I'd like.

The junction istself is near Leicester Square and consists of 7 one way streets (4 in, 3 out) meeting at a mini roundabout with a tall monument in the centre. This monument has 7 sundials on it (one on each face), hence the name.



Later we wandered to south towards Westminster and wandered through St James Park. We found a guy hand feeding squirrels - it was fantastic - I got loads of photos and a few videos. One of a squirrel running up the guy's leg, taking a nut and scurrying off.


Shortly after 5 we went to head the quarter hour chimes but annoyingly a noisy bus and a police car went past and masked the sound. Such a small thing to do, and still I've not yet heard the bells up front in person. I shall have to stand next to the tower next time I'm in the area :-)

Then we went our separate ways and I headed up to Islington to have dinner with [livejournal.com profile] zapruder. Rar. We finally met up after 2 previous failed attempts. We ate at a place called La Porchetta and they served huge portions. So big, in fact, that even I with my huge appetite was unable to finish. Never mind - I took it home with me and finished it off the following day.

I had previously thought about writing up my tumour story in book form, but don't quite know how I'd pad it out into a reasonable length. Conversation over dinner gave me a few ideas, including adding some stories about how Nf affected me as a child, some stories from school and those medics to whom I've been a patient.
So, thanks for re-kindling my interest
I shall start looking for publishers at some stage.

All in all, it was an awesome and yet tiring day.
mattp: (Default)
The documentary about my tumour is now being shown on Monday 21st on C4 at 9pm, i.e. one week later that I was last told. I'm hoping to be in London for the screening party, and if so I'll be meeting up with the rest of the crew. I hope I'm working somewhere relatively nearby so that this can happen, as I've not seen them for ages.

Got a few other posts to write now; one serious, one less so. Might eat first and post later
mattp: (tax)
I got a call the other day (I've been away from LiveJournal, and I'll detail that shortly) telling me that the documentary for which I was a subject has been given an air date. It's Monday 14th february at 9pm on C4. It's part of a new series of Bodyshock and I'm in the third program rather comically called "Megatumour".

Paul (the producer) was apprehensive about my possible reaction in case I found it offensive. Quite the opposite, I burst out laughing when I heard it.

So, if you participated or just want to see me share far too much about myself on national TV, then be sure to watch it :-)

Hmm. I've just seen http://news.bbc.co.uk/1/hi/health/2266641.stm . I'd been reading that for some time. It makes me feel incredibly lucky to have pulled through so well. Hearing stories such as this sometimes makes me feel almost guilty about it, though I do try to rationalise that line of thought away.
mattp: (Default)
The last of the filming went ahead on Monday evening. It started off with Dave and I going out for a curry then me being filmed doing my daily routine. This was basically to show me mobility after the whole escapade and to show me settling back in to my life as it was before. (or some approximation thereof)

Then there was a final interview. I've left it a few days so forgot what we discussed, but the main point I remember was explaining that I've been given the all clear and save for a bit of foot paralysis, it's pretty much back to normal.

The guys are a great group of people, and at their insitence I've vowed to stay in touch. This surprises me, but pleasantly so. I would have thought that they'd meet so many people as part of their jobs, so I'm flattered. They even gave me a CD as a finishing present - an album by a band called Bent. They're a bit like Air and Zero 7 - very much as the mellow and lyricless (save for vocalisations) spectrum of music.

Hmm, ths post is more contentless than I thought it would be. It serves as a good punctuation point in the story though.

Good news

Dec. 7th, 2004 03:27 pm
mattp: (tax)
Previous chapters linked from http://www.livejournal.com/users/matthewp/157130.html

I just took a call from my surgeon. He's got the results of the histology of the tumour. All tests proved clear, and no further treatment is necessary. This is as I suspected (having been told about how well-formed the excised tumour was), but it's great to know for sure. It's such a relief.

Next Monday I'm returning to the hospital for a physio session and also to have the dressing changed and staples removed. After then I should be a lot more mobile and think about starting to return to work.

What this means is that no follow-up treatment such as chemo or radio-therapy will be needed. The chances of a recurrence are as though this hadn't happened, i.e. quite low though still a point of caution as has always been the case with
Neurofibromatosis I.

*happybounce*

The main thing is that I need to be more disciplined in going to my GP to have regular checkups to help spot this sort of thing developing early.

clicky
mattp: (Default)
Previous chapters linked from: http://www.livejournal.com/users/matthewp/157130.html

I got discharged yesterday afternoon and the lovely [livejournal.com profile] mhw came to pick me up. Shortly afterwards my ex-housemate Helen arrived to and then we headed off for a bite to eat in the nearby Gemini cafe. We stayed there for a couple of hours and then headed back to mine and had mac cheese for dinner.

Anyway, the details you wanted. The op went well and I had slept off most of the anaesthetic by Wednesday evening / Thursday morning. I was still occasionally feeling drowsy, but in a different way, and have since discovered (due to the oracle that is [livejournal.com profile] mhw) that it would most likely have been the Tramadol that I've been prescribed as one of my painkillers. I think I'll be forgoing that, but I'll let my doc know when I go in for the clinic on Monday. The other meds I've been given are Ibuprofen (anti-inflammitory - instead of the Diclenofac that I was given after the biopsy which also made me drowsy), regular paracetamol and aspirin. On the subject of pain though, I've had next to none, which surprises me. The only discomfort I have is moving my leg from bent to straight and vice-versa but I think that's more due to the dressing tugging. Because I've had no pain I experimented by stopping taking the painkillers (and it hasn't come back) though I've continued to take the aspirin because this acts as an anti-clotting agent.

The wound itself details beneath hidden for the squeamish ) As a result of the nerve damage, I have a small insensate area on the top of my right foot and also what's called 'foot-droop' where I cannot raise my foot at the ankle. Due to the lenght of missing nerve section this is likely to be permanent, but it may regrow. (If it does it will take months rather than weeks.) I'm currently wearing a footsplint and have a few exercises to perform to maintain what limited mobility I have. I'm able to walk and climb/descend stairs, albeit slowly and haven't even thought about driving yet. I'll wait until the dressing is removed and my leg is less stiff before thinking about driving, but at least there is no pain. That's a welcome bonus.

For now, it's just a matter of waiting. I'm hoping to be back at work within a week.

Oh, FFS.

Nov. 29th, 2004 07:40 pm
mattp: (eye)
I got a call from the hospital today whilst at work, moving the op back to tomorrow. At least it means I'm more likely to recover in time for Christmas.

I should be home for the weekend - other than that there's not much more to add that I've not already written in the posts linked from http://www.livejournal.com/users/matthewp/157130.html

See you soon, and try not to miss me too much ;-)

Updated: 2004-11-30T0150:
The Doc said that the results indicated that the tumour was benign so they could go for a smaller op than they were originally planning. Instead the incision will be 12-15in and the tumour (still only 3x5in) can be excised with a relatively small (0.5in) surrounding envelope and there should be no need to remove a chunk of my sciatic nerve. This means that mobility will be impaired as little as possible and also indicates a much shorter recovery time.
mattp: (Default)
(Previous chapters at http://www.livejournal.com/users/matthewp/157130.html)

The scan was pretty uneventful, but I'll detail what happened here forcompleteness. I went in around 2pm.

I don't have the results yet, but that's understandable as there have only been 3 days since it happened. THe suprising thing is that it was a mid-section scan rather than of my leg. I've yet to find out why this is, and annoyingly the radiographer wasn't particularly talkative when I asked him.
The procedure itself only took 20 minutes, plus preparation time for a cannula/

During the scan I was injected with 100ml of an iodine solution (in the aforementioned cannula). It had a couple of unusual side-effects: the first wasthat it made me feel warm and the second it felt as though I was passing water. I'd been forewarned about this so it wasn't a complete surprise but was still a bit disconcerting.

30 minutes later I'd been released and was home.

Fuck it

Nov. 25th, 2004 01:42 pm
mattp: (yellow lisa)
They've put the op back another week, pending further tests. But I have been called in for a CAT scan tomorrow.

I'm beginning to get annoyed by this, as it'sdifficult to plan anything. That and the pain (though managable) is pissing me off.

Moved back to November 30th

(List of chapters of this story at http://www.livejournal.com/users/matthewp/157130.html)
mattp: (me by wall)
Full story at http://www.livejournal.com/users/matthewp/157130.html in case you missed it.

They've put the op back one week. This is because the histology was inconclusive and they want to get a third opinion and do a couple more tests. This will be done at the tail end of this week and I'm going in next Tuesday. SO you're lumped ;-) with me for another 6 days or so.

The main annoyace (aside from the difficulty walking, which I'm sure will be temporarily worse) is that my recovery time will lapse closer to Christmas making travel around that time awkward. Mind you, the way how this country deals with anything slightly out of the ordinary w.r.t. transport (leaves, snow, rain, let alone volume of people) means that it's probably no bad thing.

Just chatting with a couple of people online and also drinking copious amounts of water but still feeling thirsty. What's up with my body? *shrug* Just a bit more spodding, then off to bed.
mattp: (yellow lisa)
I don't really know where this entry is taking me. It'll just be another ramble

Shortly after the biopsy, when I came around, I had a lot of pain on the top surface of my foot and immediately around the area where the biopsy took place.

That soon subsided and I was walking again, though limping a bit. Over the next few days the pain moved to my shin but was more of an itch.

And over the past two days the pain has been localised to my knee and it's quite a dull ache, though there are also occasionaly twinges of sharp pain. I'm also freuqenly getting a pins'n'needles sensation on the back of my leg. My limp is ore pronounced, and I've found that if I exaggerate it then this serves to limit the pain quite well. I also can't lift more than about 10kg in my right hand, as that puts too much pressure on my leg.

I'm not making this post to ask for sympathy but I know if I withhold comments then that'll just worry you even more. This is more for my own reference though I'll probably leave this friends-locked rather than private.

Ah. I've got a reason to leave this non-private. Once I have contact details I'll let people know and have a comment left with so that you're kept up-to-date.


On that note, as I mentioned at the tail end of last week, I'm going to hospital tomorrow and will be out at the weekend. I don't know more than that, but we shall see.
mattp: (Default)
A different phonecall this tim, from a nurse acting on behalf of my surgeon. They've got the results back of the histology and are operating this coming Tuesday. (I'm to go in at1pm on the Monday before, which means that my drinks with Cath have to be cancelled... grrrr). I'll be kept in for 5 days and then home for the weekend assuming no complications. Op put back one week. See http://www.livejournal.com/users/matthewp/166451.html

(History of this whole escapade at http://www.livejournal.com/users/matthewp/157130.html)

Thank you so much, everyone, for your wonderful support. I do appreciate it, even if it doesn't always seem that way.

Biopsy

Nov. 18th, 2004 04:25 pm
mattp: (Default)
Full story here: http://www.livejournal.com/users/matthewp/157130.html

The biopsy went well. My mum arrived to pick me up around 0630am and we were at the hospital for 7am. Whilst being prep'd I was watching the monitoring systems and noticed that my blood pressure had shot up to 130/80 rather than the 110/68 which it was earlier in the day. I was quite nervous and they picked up on this. My main concern was not the biopsy itself, but the general anaesthetic. I was really fearful of losing consciousness consciously.

I was still inquistive at this point - it's my geeky nature showing again. I worked out that the green figure was my heart rate (and the trace) and that red was the BP. I asked about the blue figure (99) and as told that this was the oxygen absorbtion. I guessed that this explained the clip on my finger which shone a red light. Does anyone know what that means though? Google finds me matches but they aren't relevant enough

I looked closely and saw spikes in the ECG trace and asked what was causing the tachycardia; amusingly they explained it was a faulty connection which they were in the process of replacing as I asked.

Then came the injection - all I remember is that it gave me a huge amount of tinnitus and then I heard them chatting amongst themselves and then I lost consciousness.

I don't remember what time I woke up but I dosed on and off until 5pm or so, having not kept much food down. I was walking unaided which is a definite bonus but still in a bit of pain. Most of this is what's called referred pain, in that it was not at the site of the operation, but instead related to where the affected nerves were. I've been prescribed diclofenac and kapake and they are great; they alleviate pretty much all of the pain and don't make me drowsy, depsite contraindictions on the packaging. Diclofenac does make me a bit nauseous though.

I slept most of yesterday but was up and about late evening and even managed to watch South Park the movie without falling asleep. Today I was feeling well enough to cook lunch (Fish in a lime and corriander sauce) but still haven't left the house.

I'm aiming to go to work tomorrow and have arranged a lift in with someone who lives nearby. This will be good - I'm getting so bored stuck at home and seeing a different building will be a pleasant change. I've called my employer w.r.t. hand controls for the car and am waiting to hear back. I got the impression that they might even end up paying which is excellent; I had budgeted to pay for that myself.

Oh, the important part: I get the results within a week and then the op is likely to be on the 30th. I'll spend 5 days in hospital afterwards and be home for the weekend when the lovely [livejournal.com profile] mhw comes to stay.
mattp: (Default)
Full story at http://www.livejournal.com/users/matthewp/157130.html , in case you missed it.

The biopsy is tomorrow, but asit's an early appt. I'm going in this evening.. at 0730. It'll be under a general anaesthetic so I'll be sleeping lots an out of communication for a couple of days. Email/SMS/LJ are the best ways to contact me, rather than by phone. Contact details linked from my userinfo page in case you don't have them.

THe op itself will be either Tuesday 23rd or Tuesday 30th; the surgeon only operates on that day of the week, apparantly.

I'm doing doingfine mentally, though a bit exhausted from a lovely weekend in Birmingham. I shall write about that some time soon.

Be well.
mattp: (webcam)
Main thread here: http://www.livejournal.com/users/matthewp/157130.html

The biopsy is on next tuesday; I've known this since the last meeting. Today I was given two possible dates for the surgery itself: 23rd and 30th of November. Both are Tuesdays as that's the main day the surgeon operates. It might be the following week, but I was told that would be unlikely. I'll update here once I know which of the two it is.

Off out now for food then pubbage with [livejournal.com profile] softfruit et al.
mattp: (me by wall)
Summary of this story (where you can read previous updates) at: http://www.livejournal.com/users/matthewp/157130.html

I thought the biopsy was today (well, yesterday as I write this), but it wasn't. Instead it was a prebiopsy consultation with the surgeon. They had pictures of the MRI scans which were interesting but scary too - moreso than the PET scans. I've asked for a copy of the MRI scans and hopefully they'll be sent to me. (Unfortunately the geek from before wasn't there so I can't be certain)

Next monday I'll be told when the biopsy itself will be; this will be under a general anaethetic as the area is too difficult to anaesthetise locally. That'll be sent off for analysis so that the know what type of tissue it is and about 2 weeks later I'll have the operation to remove the tumour itself. After that I'll spend about 5 days to 1 week in hospital and then be able to go home. I'll be weak for about 3 weeks and then i'lb e mobile again - whether this means in a wheelchair or on crutches I don't know.

Whilst I knew some of the posibilities, I didn't know all the details nor the likelihoods.
survival rates. They're not what I expected. )

My mum was with me and also asked a few pertinent questions. Contrary to my previous angst I don't object to her being there. It was difficult at first but this has (as I suspected) helped to bring us closer. And at the end of the day I came out to her and even told her about BiCon and [livejournal.com profile] mhw. She's happy for me to stay in Manchester around my friends but natually wants the opportunity to look after me on occasion too. I'll not object to that, but she was in agreement of the tension between us in recent times and living together 24-7 would put a lot of strain on that.

Oh, what I didn't mention is that once again the film crew were with me. Several people have asked about this, and whether I mind. I don't. In some ways I welcome it because Paul (the director) during the interviews afterwards asks some quite personal questions and talking about things helps me to think about them and analyse them rather than just shelving them away and forgetting about them, only for them to explode uncontrollably later on. So the crew were there filming me being briefly examined by the surgeon and the discussion that ensued along with my options. Then we came back to my house and Paul interviewed the two of us just to get a bit more insight.

I'm not quite sure how this is affecting me. I'm still calm and collected; I've not cried or felt resentful of fate or been angry. (This is both on and off camera) Yes, I understand that those are normal reactions and are quite likely in terminally ill patients. (OK, so it's not definitely terminal but IHYKWIM)

I wouldn't say that I feel numb - I'm happy to talk about things whether on a medical, practical, technical or personal level. Perhaps it's talking to people and writing in this journal which helps keeps me sane. That and the extensive research I've been doing at most stages. Gareth (the consultant I saw last time) and Dr Paul (who I saw today - my surgeon) have both commented that I'm the atypical patient in this respect and that I'm asking complex and in-depth questions. I was speaking to Paul the director about this earlier today and asked about how much they'll need to write for the narrator to put in as background information, because a lot of the basic information I already know, but the TV masses might not necessarily, and this would therefore need explaining.
The point I was making above is that I'm a little surpised at myself that I've not yet had a 'strong' reaction. *shrug*

One of the questions that I was asked is what will I do with the rest of my life. (It wasn't phrased so flatly, but it's late and words are failing me - I'll end this post soon enough so I don't spout drivel) Anyway, assuming 2-5 years, I'd like to carry on with my current job for a few months and then move to Germany to teach English there. A couple of years ago I started saving in an ISA so have quite a bit put away. Inheritance tax is a stupid amount and I don't have any dependants anyway so it would be feasible for me to spend supplementing the pittance that (AIUI) ESL teaching pays. Other ambitions are to do a parachute jump and to visit Japan.

All that said, I don't know for certain it will be fatal. If I survive it would perhaps be unwise to have spent all my savings. Or would it? Many people cope without savings (living of wages as they come in) and that said I've been coping whilst adding to those savings. It's something I'll need to think about, certainly.

Lots of practical things to think about too - such as a will and possible housemove (to somewhere more suitable, such as a ground floor flat, low counter tops etc) and how this affects my current employment, assuming I don't leave and do ESL teaching.

In summary, bleaker than I expected but I'm still doing OK.

Random thought of the moment before I think about bed. Should I turn this story into a book?
mattp: (cartoon)
OK, so it's taken me the best part of a week to make this.
Story summary here: http://www.livejournal.com/users/matthewp/157130.html

Tuesday evening went well; we met up at Taurus and had drinks and food. Paid for my the production company :-) Yay for free food. Thanks to [livejournal.com profile] softfruit, [livejournal.com profile] dagonet, [livejournal.com profile] angeoverherefor coming along. They were filming this bit so conversation was remarkably controlled ;-)

Then we went back to mine, Helen arrived and I had the interview. They asked some awkwardquestions and tried to evoke a reaction from me. I think I surprised myself bybeing remarkably calm throughoutit all. I wouldn't say I don'tcare about it, but I had no problems answering anything, didn't need to take breaks due to crying or to re-compose myself. *shrug*

Then theyfilmed me doing my daily routine such as showering etc which was fine until the hot water ran out. Bah to cold showers.

The morning after:
Got a taxi to the hospital and Helen accompanied me. I'm so grateful for that. The angst was building up, but I think I was more concerned about the results than the tumour itself, if you can see the distinction.

The scan itself was a two-pass scan, seperated by 90 minutes. They started by giving me an injection which made me radioactive. This was so that they can track the flow of sugar around my body; glucose is more prevalent in cells which are multiplying, so a radiaction level higher than they expect is indicative of replication faster than they expect. The first scan took 90 minutes and I was very relaxed during it all. So much so that I fell asleep and woke up about 20 minutes before the end.

Then I had lunch and had the second scan. The consultant was on site so able to interpet the results straight away, and I did this under camera (without having heard the results before-hand). It was as they expected still growing rapidly. As they had done a full body scan, they had more information available. It showed that the cancerous cells had not spread to my lymph nodes (the core of the immune system), so further spread had not taken place aeither. That much at least was a relief.

Despite this, I'm going for a biopsy within a week or so and for surgery to have it removed faily soon after - *handwave* - withina month, say.

Then I had a closing interview, away from the doctor but all the questions blur into one so I forget the details of what I said.


Geeky bit:
I asked to see the scan pictures (having still not even seen the MRI scan from a few months ago). I recognised it as a Unix-basedsystem and pointed this out. They technician confirmed that it was and we mutually identified ourselves as geeks. The scanner takes several lateral slices for each of the pictures - 270-odd in total for me. It then converts that to a 3Dmodel. He had written an extention to make that model rotatable and zoomable. Yay for geekery.

The scan pictures were greyscale, with darkness showing high levels of radiation. It turns out that the area on my leg was as dark as my kidneys and heart. I don't know what the units are, but the fact that the rates were of a similar magnitude were slightly concerning. I've asked for this to be emailed to me, but I haven't got it yet. I'll be sure to post it when it arrives.

Images downloadable from http://mat.tp/2004/10/27/tumour.html

Next update soon.
mattp: (me by wall)
Summary here: http://www.livejournal.com/users/matthewp/157130.html

I was filmed, and it went OK and the crew were largely unobtrusive.
The results were not excellent, as I suspected would be the case, but not at all catastrophic. I'll make a more detailed post later.
LJ being slow so no patience to catch up with posts/commenting now.

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