Hello
I was diagnosed on NYE with Hodgkins and will be having a biopsy tomorrow.
I'm obviously scared and frightened, alongside the heady concoction of denial (it doesn't feel like it's me), sadness, hope (it's really treatable and the success rate is high), attempts to distract myself and confusion. .
How did you guys find dealing with the bit before you find out the extent of everything? I mean, I don't know what stage it's at or anything so it's a bit of a daunting question if I look over it. What happens after the biopsy?
Sorry, so many questions... just thought it'd be nice to find people who also went through the same.
Thank you so much in advance
Tom
elmambo
- you got a general asasetic?!; they did mine under local! - err, as I can't actually recall it though, I'm guessing they may well have given me the option... - either that or I windged enough, that they did it under just a local; I've.... got a silly in some ways 'thing' with pain, and stuff like that. as I can just 'decide' not to feel it, I always figure I might as well not bother with any pain killers, heavy anasetics, etc, if I can avoid it; over the years I've had facial surgery to a strange left-over piece of wing mirror left embeded in my forehead; was kinda weird chatting to the surgin whilst he opperated!; also they did my origional Brain Haemorridge opperation under just a local, but I can't really reclal that, I think I was a little out of it at the time.... - I've done self-performed opperations on myself, to remove ingrowing toenails with no anasetic, just tons of surgical spirit for steralising etc (yeh, I know, and no I'd not contemplate such at the moment, given the chemo etc).
and-- as goes 'speed'!; gosh yes!; in some ways, this has been the quickest four months and a bit of my life; in others, the slowest.... - bits seem to run in slow m motion; then, one minute you are saying "that is 1B done, I'm X of the way through my cycles, and the next moment; "thats 4A done, one more to go!"; very weird...
Don't be too quick to assume you'll never fancy that icecream again!; Perhaps I'm not normal in my response, to the ABVD; but, I've had heightened taste, and scent, and asides soemtimes going off a certain food, or type of tea, drink, etc, for a while, I've never actually found I just can't eat X Y or Z; and, gosh, thanks to my steroids I've been eating basically twice what I would normally and hence have put on so much weight! (so unfair!), =- today; my final chemo; after clinic in the morning; Fish N chips from the shop near the hospital, for lunch (I had scrambled eggs on toast for breakfast), then, got home from chemo; ceaser salad, again, (quick, and easy), with ham, ementile cheese (however its spelt), ham, err, and some more bread; icecream and gataux for dessert!; was too tired to make it to the pub, for a victory beer!; just poured myself a pint and had that..... - yeh, gona have a second one, then head to bed; as I've got Endochrinology clinick at 11 AM, and eye clinic at 2 PM tomorro!; more damn hopsital! (no neither chemolymphoma related clinic visits, though the eye dryness and/or infection may be chemo related actually).
Jakki!; two to go! two to go!; it was about that point, I think I really felt 'There is an end to this!'; not only can you do it... you've damn well nearly done it! go Girl!
Tom.... - maybe you've still got some chemo side affects lurking: this shit can't just vanish from our systems overnight.... - I'm guessing three or four weeks from now, I'll have noticible chemo vanishing from my system, the two week gap between infusion, is afterall, just to make us 'fit' enough, to take the next bash, not exactly 'recover' as it were! Sorry to hear your getting the side affects; yeh, I know... its not easy, maybe try take it a bit easier?: bluddy hell... I can't imagine the idea of doing a workout!; a decent long, if not especially fast walk outside is really about it for me now; and housework; that is* my workout!; I'm like a 90 year old after doing just a bit of hoovering or sweeping... and... gosh, that is just so not me, energy or fitness wise (yeh I know I'm an old git compaired to you, but.... really I wasn't that* unfit bfore all this fun an games started....)
-- hair; I really don't know; mine is still there.... still very thin, but, apparently not looking like I@m going bald, though looks like I've a receding bit on the sides, which I think is chemo, and not just my increasing age!; thing and.... just less thick too; a week or so ago, it had started to actually thicken up; now, it seems a bit thinner again; place your bets what its gona do over the next couple weeks, now I've had my final infusion!; I'm still thinking its gona supprise me, at the last minute, and just vanish!; in some ways... maybe it'd be better if it did, a sort of 'clean start' to grow it back 'normal' maybe... although.... it'd sure feel weird not having any hair, for the first time ever in my life, but... really such a small price to pay, IMO....
Jakki "tears at the finish line" - I did that today! haa! slightly less energy expended by my just sitting in the chemo chair for a few hours though! well done to your husband! - and, no doubt, doing this, in addition to helping and supporting you; I know I'd be lost without my partner
, especially William, being with me through it all,- he's taken a bashing as I have, from the chemo, albeit differntly; so gonana...... pamper him, once I'm back in a fit state to do so,!
Well. today; my final infusion. 4 B.
Was a good day, especially clinick in the morning; finally got to speak to my sensible doctor (or is she a consultant, I don't know anymore who's who).
anyhow. she's brillient. so clinically competant, and as she's often also talking to me about my Addisons stuff, sh'es a serious proper scientist, who, I can talk to level, just in science, and know she understand me, and she knows I understand her, so doesn't baby talk back to me, but just uses science talk, so I can understand her.
bloods were fun;
you know I mentioned some can just 'get it', with putting the line in to the portacath: well, I had her today; Sue; and, it took her five shots to get it in right! haa!; didn't feel the first four; which, turns out was probably because they'd missed; apparently there is some metal round the port, and the first four hit that, so didn't relaly 'go in', as it were; five one went striaght home; and I sort of felt it a bit, though it doesn't hurt (but I'e this weird thing with pain....).
after bloods, sat to wait for clinic, so I s listened to some music on the Ipod, to zen out, whilst W read on his Kindle for a while.
Doctor in clinic really explained clearly to me, about the logic behind why I need the radtiation, which was good; really, they want me to have 6 cycles; but because I can't have the vinblastin, and because I'm now getting the weird random infections, they're not wanting to put me for the extra two cycles, beyond what I had today; so looks like the radiation is needed, and desired, which is fine with me. - now its actually explained. for the first time. - might be getting more radiation than I thought, though I'll know fmore on that when I get to speak to the radiology people; probably two or three weeks of it, I think.- that's gona be knackering just with the each day bus rides to and back from hospital, waiting about... etc., etc., - hoping I'm feeling OK; my plan is; tie that in with walking myself fit; sod the bus- its summer I'll invenst in some sunscrean..... as I'm ment to do (first time today a nurse or doctor even said about the sunscreen thing to me; afgter I asked the consultant/doctor, for advice on it); factor 30 or more she said.
Then chemo at 2, after the clinick (and after the fish N chips ; haddock again, gorgeous).
Bleo and A, in with the injection into the port, nice and quick (about ten minutes for both, really)m, after having had my premeds, and the saline drip whilst we watied an hour for the chemo drugs to be sent up....
Then the Dacarbazine; I told them I ghoutht it too quick last time; they put it on slower, so it took 45 minutes, not 30; and I didn't get any scent/smell from it, through my skin, and coudln't taste it. =- still can't, which is good; but I could feel it, all over my body, as it went into my circulation; explained it to nurse as best I could... but, didn't think it was nasty side affect, or bad... just I could... sense/feel it... very weird, kinda like a 'warmth' - never got hat from any of the chemo drugs in earlier infusions; its definatly got more fightier as the infusions went on.
said a farewell, and promised to pop in for a visit when I'm in the area, to the nurse/staff, esp our dear Andria on the chek-in desk! = what the hell is wrong with me?: she was flirting even more wildly than useual today... err. actually I think I was even more flirty than useual today... I managed to shock the bloods nurse in the morning too I think.... just a silly random thro-away comment I made I think!
so... chemo all done... nothing special... just 'another day', only it was the last... (hopefully).
felt fine. so took a slow walk home, with W, in the loverly late afternoon/early evening sun...
gosh. feeling a bit more.... whiped out now though; its nearly 1 Am, time for an early bed!; I had to walk past the pub, on the way home.... so so tempted... but... I just wanted to crash onto the sofa, grab a bottle of fresh juice, and neck that, and ... curl up for a while with W.... more than a few tears.... on the walk home... nothing.... sort of obious, just... relief I think really. - a not particularly plesent chapeter in my life, finished with; yeh, radiation to come, PET scans to come... and... - who knows what else... - but... one part of it finished, even if there ends up having to be more chemo, at a later stage... then... well, then there is, I'll just out-weird it like I did this time, or perhaps take a differnt approach; hopefully one not involving a stroke/haemorridge a week or so before it commences, that turns out to have been a pretty daft idea on my part, - not that it was intential of course!
final, white ribbon tied into my hair band; eight ribbons, eight differnt colours, eight infusions. - I may as yet add more, for the radiation, not sure what I'll do to meark each one of them!; I'm running out of space for ribbons though, unless my pony tail rapidly gets thicker and stronger to take the weight of them all!- still considering beads or something, for the radiation, but no idea how ... to affix them into the ribbons/hair band.... and, worry I'll get hit in the head by flying glass beads, if the wind catches it! (its not exactly a hardship when a ribbon flips round and whips me, when the wind catches it!).
so. didn't make it to a beer in the pub, after to ..... not sure celibrate is the right word!;
so I've opened a bottle instead. which, sadly now looks empty.
sod it. another can of guinness, no more bottled beer in teh fridge, I think, then bed, up at 8.15 I think, so I've time to get myself together, eat an take meds, before heading to the bus, and hospital once more, for the endochrinology and eye clinic this time; my oncology consultant thinks my low blood pressure may be addison's related; I'd forgotten about the, damn chemo brain; can't recall the name; there is another couple of very miner hormones, asides cortisol, one is missing, with Addison's,; most people don't need to take them; but sometimes, one in particular is needed; and this one has an affect on blood pressure; so, sounds like that might be a promising explination; even though, sadly, it means yet another drug, I'll likely have to take, like the hydrocortisone, for life.... damnit! I've joined the club of the daily medication takers for life...
Still looking increasingly Like I've utterly broken with my family's tradition of dieing from cancer... though... which is a serious bonus... =- and yes, I'm all set for the surviver guilt to set in, some time just before Christmas I think... not just family, but friends, and partners too, everyone I've been close too who's had cancer, died.... cept me... - no. that isn't me sinking into depression... - I've really not got either the time or energy for that... yet... - maybe later, and ... like everythign else, to be addressed as and when it appears,
had to strip for my consultant/doctor!
yeh. it was like only but a matter of time.... - adviced to use barrier cream (vaserline basically), to stop the area in my groin getting more inflamed, she didn't think there was any sign of infection/sport/boil etc, but maybe there had been, or its an ingroing hair or something, - then she told me off for wearing too tight knickers, and trousers... oops...
Also adviced me to go get a pair of sunglasses; to avoid the eyes getting even dryer; thinks that doesn't look infection either, just dryness; probably chemo related, so the glasses make sense I guess... - gona raid the shops Sunday, on my way too/back from Lush!; I think I'll need tlhe cash machine Sunday! - I've never owned sunglasses in my life... but... gona try find soething that doesn't feel wildly uncomfortable, or make me look too stupid... - maybe se if they've some utterly stupid coloured ones, that might be ... amusing... just so long as they're not too 'designer' and over-priced... and hopefully I'l not just break them or lose tlhem the first time I hae a proper session in the pub... - next week I recon at this rate... I need a proper drink!
right. maybe open that can of Guinness now. because... its probably not a good idea. then I must try sleep for the bonus hospital non-chemo trip tomorrow!; so musten't have fish N chips again though; I've got so much weight to lose now! thanks to the steroids. =- from here on in, its rebuild, and repair this body, back to , better than it was before this all began..., well, if I've got to do it anyhow, might as well aim for 'even better' than I started with, afterall, now I've quit smoking for four months, I oughta be like some super-human level of fitness, surely... haa!
hope everyone else is having a nice relaxing, not too ... side-affecty time of tonight, and, well, looking at the time, probaly already safetly in bed, if you've any sense... or, at least more than I have...
if this is the other side.... its definatly feeling and looking a lot better than the side i just arrived to it from; een if the drugs are being extra fighty right now... that stuff... pah.... I can just shout at it.... if needs be... and bludgen through with a goodly dose of weirdness and insanity.
back tomorrow for another late post I guess, after the fun and games back at hospital tomorrow , all day long again!=- hoping for another walk back, that was so nice, and can't do anything but good, for fitness, fatigue, and, actually, just being outside, fresh air, sun, wind, a huge mental health boost....
night all!
