h2g2 The Hitchhiker's Guide to the Galaxy: Earth Edition

The perlipheral neuropathy, in my fingers, has vanished; or, at least almost entirely vanished.

I can feel my own skin, touch my face, feel my facial skin. touch my arms, feet, I can feel my own body again.

gosh.
gosh.
Oh. gosh.

poor bee, one of my teddy's, is now soaked, with tears. I'm so happy.

Oh, darling, such improvement!

Things ... seem a little more real in my close world, now, as I've got touch and hearing again, to sense the environment with. - I'd not realised just how much that was affecting my 'grip' on reality... which... lets face it, isn't exaclty very solid a grip at teh best of times

I've got a palpable body again. seriously. weird.

its made sucha differnce.

yes, I kept my hearing... that's kinda important for me... but losing my sense of touch... that... really 'closed down' a lot of stuff... in terms of sensory... or more accurately proper* sensory input; I still could sort of feel... but it was all rong and... now, its more* or less* 100% right again; not fully, perhaps, but, damn closer than its been in months and; that's only 5 weeks after the last evil vinblastine (the drug taht caused it) so... every sign it'll hopefully improve ven more, as time goes on.

So.... maybe I should find some other stuff to try feeling with myhands..... Hmmmm... I've an idea.... I might warn Sir before he turns up tomorrow

Ok... so its not 'over' o'ver yet... but... its feeling damn close, day by day at teh moment... - three more hair ribbons to go.... == three more chemos. then the radiation. and then.

some rebuilding and reconstruction of a broken, battered body, and mind, but.... TBH. after 'this' I can't see that as being much a problem sure... half a stone or so to shift... but... again...

Right. kitchen to clean. dinner to make. long hot bath of gorgeousness to take ,diva>

For some reason it's never really clicked with me until I read this journal how important the sense of touch must be for you

So glad it's back!

Deb

Oh; so much so!

I might not have gotten the perlipheral neuropathy quite as bad as I have, had the first consultant I spoke to about it, realised either; he was... a bit ... well, I told him and he basically ignored it...

This is gona sound a bit gender/sex-ist; but, the next time, I mentioned it, to the fabulus female consultant (the one who called me a drama queen), and as William said, after, her face just dropped.... - she'd started writing the vinblastine (guilty chemo drug), off my script before she'd even replied... =- she just 'got' how kinda important this was

Esxpecially, don't forget; whilst on chemo I've got to be careful from infections etc, whilst I've got a rubbish or non existant immune system; not having touch, I've found it major hard cleaning, sterilising etc; which I have to do constantly, washing my hands, steralising worktops, washing up, etc., etc., -
also, whilst I've had no or little sensation in my hands; this constant washing, cleaning etc; has utterly messed my hands up; I couldn't feel heat properly at all, so they're so messed up from washign them in/under wildly over hot water, plus burning them whilst cooking, and cutting them too, when using kitchen knifes etc; and not noticing

Baths have been fun too;

*runs bath.*

*Puts hand in bath.*

'mmM. nice and warm'.

*stands in bath*

'aggggggggghhhhhhhhhhhhhhh! my feet!'
-
I'm kidna lucky though I guess; the perlipheral neuropathy could have affected my feet, too, and didn't; and hasn't really affected my arms, or legs...

and.

Such pleasure; My hands are now in such pain!

which is so* good; perlipheral nerves re-growing, and feeling all the dammage I've done to them! - which is... of course good, as I can feel it!

Hmmm... maybe not up there with the bliss of a nice cane... or flogger... or whip... but... ahh.. sod it... yeh it is

see?; I really can't do proper* serious for long

fingers still... not quite right... but... so nearly there

and, feeling again, taking the bacon off the grill, this mornig; feeling just that its hot

bleh... felt bleh this mroning.....

Had to give myself a motivational pep talk to get me out of bed...

"Get out of bed, you fat idle, cancerous lazy slut"

well... it sort of worked... that, the thought of bacon, and the need to empty my bladder eventually made me roll over scream and get out of bed nearly 4 hours sleep last night

bacon eaten... antibiotic taken (it really doesn't like being in an empty stomach, unlike the other meds I take earlier as soon as I get up)

feeling chilli today... probably oughta dress in something... a bit warmer than I have thrown on
William over, this afternoon; emergency trip back to Lush, to replenish supplies and... guess I oughta be thinkinng about getting more food too... not sure what at teh moment.... bread and butter, i think, juice, and... not sure waht else... .lettuce.... and... maybe some eggs... and things

This is gona be such a strange, half-way house, I think... Or, rather, I think I'm discovering

OK... its .. kinda nice, to put it mildly, to have a "complete remission", from an intermediate PET after two cycles; having spent some time, reading a paper, to the medical council; last night, which turned out to be co-authoried, by my head consulstant, I kinda figure out, see the significence of this... even more

also, puts the treatment options, as he, and the other co-authors, plus literature survey, etc., into context; balance, in effect, between side-affects of 'more' treatment', vs 'risk' of relapse, if less treatments; and balance, overall between chemo VS RT (radiotherapy).

Some interesting statistics... I might be rubbish at mental sums, but I can do stats, oddly

So. the clear, PET after 2 cycles, is .... majorly good, as far as I can tell; better, than one would normally expect, were I a decade or so less...... experienced and so in the younger age group, and, kinda unheard of, for if i were older and in ancient oldies 'age grouping' of disease onset

I can also make sense of the balancing the chemo, and its side-affects, with RT, and its own set of side affects; the RT carrys increase likelyhood of my getting leukimia; especially so, I guess, in my case, due to familial tendancies, in that direction.

also, nicely ties the B0=-lymphocyte abnormality, in my lymphoma with the simular abnormalities, most likely giving rise to the random seemingly random, autoimmunity I'm getting

and, seems to even my maths, the increased leukemia risk, is outweighed by the statistical probability of the reduction in lymphoma relapse by having the Radiation

which... is nice and logic based... and he, my consultant, seems to be following his and his co-authors, advice, to the letter; as much as one can, when looking at an individual patient, with range of risks, genetics, age of onset, other secondary factors, genetic, etc., etc., all a little outweighed, any how, by my clear PET so early on, as far as I can tell..

anyhow....

that is all... like really quite good... to put it mildly

then..... trying to get my head round that.... - yet whilst still being on the chemo.... biochemistry not exactly 'normal' in one, right now, I guess....

after haivng woken.... done stuff, eaten bacon, drunk coffee.... first tidy and clean in kitchen.... I felt like I had some energy...

full clean in kitchen. steralise.
swept bedroom, dusted, swept upstairs, cleaned bathroom, sterlaised bathroom. cleaned top staircase.



OK... I'm well... 'recovered'... but... not well... and not recovered

*sits down has cup of jasmine tea*

*gets up and throws himself on bed with laptop and jar of moisturiser*

OK.

This is not compromise I'm ... just..... moisturising, in a virticle position

and. I am going out today to Lush... and the bank... and... the shops and the cafe... and... I am.... going to ... spend some time with W ...
No. compromise.... just some verticle moisturisation... for a few minutes

I'm so rubbish at being a patient... or ill... really