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

"another day, another barrel of eels, on the cliff of weirdness"

As my Grandmother would say.

Well, after yesterdays RT was canceled, it was on for today. hurrah.

Today like yesterday was two appointments (though of course, yesterday was only one, as the RT appointment was canceled).

First of was appointment for 'review' basically just a clinic appointment with a radiotherapy DR. I had things we wanted to mention to him.

First off I mentioned the ache in the arm, and it being sore already, plus the skin having changed slightly. - He said I can't have any aching or skin changes yet, from the RT.
Then he said they expect me to have no side-affects of the radiotherapy; basically, therefore just told me to shut up, and that they don't want me to tell them if I have any side affects.

Basically at that point, he kinda made noises like we oughta just leave... Luckily William stepped in, and mentioned some of the things we wanted to mention; basically leftover chemo side-affects.

Of course first thing he says is that he's not a haematologist, or oncologist. yeh. we know that; that is why I'm still mystified I never had a follow-up clinic appointment with oncology/haemotology, after the final chemo infusion.

We mention my hot flushes though. and how they've gotten worse even though its now further from the end of chemo.

and. wait. for it.
tomorrow, I'm having a blood test to confirm that I'm undergoing the menapause.
yes. the female menapause.

honestly. this could only happen to me

I was kinda toying with this as an explination myself; basically, if the results from bloods come back to confirm hormonal balance typic of female menapause, then, it basically expalins, on its own, every symptom I have had, from chemotherapy. yeh. a tad annoying, as otterwise that would tend to imply I've missed basically every damn symptom of chemo entirely, and instead, just been suffering with extreme menapause symptoms; even if the menapause itself was of course caused by the chemo;

Err. basically. some time ago I noticed. physiological changes to my ... testicles, tthat I did mention to my haemotologist. who told me, she wasn't interested, well, to use her exact phrase;

"Mark, I'm not interested in your testicles, unless they're swollen" yeh... that phrase has kinda ... remained in one's memory

anyhow. of course the chemo drugs, in killing rapidly dividing cells, I assume have whiped out the actual endochrine tissue, therein, which would normally produce testoserone.

Assuming my pituitary is working as normal; if not, indeed actually producing higher htan normal amounts; it'll have continued pumping out FSH (folicle stimulating hormone) and LH (leutenising hormone) and so, basically changed the balance of hormones in my blood, until they've more closely approximated those of a female err... there were a few other things I've noticed, that was leading me to think something was ... amiss with my gender/sexual hormones as it were err... Actually I think William noticed first... my chest... err... gotten ... changed... somewhat in shape, as well as size... hmm. but TBH I didn't necessarily think of that as a negative side affect TBH. oo. which reminds me, must remeasure myself soon... see what cup size I take thesedays


Well, assuming the tests come back positive... I guess they'll wanna treat it... and... I guess with testosterone Hmmm... unless of course... HRT is an option pah. I've been sort of male for .... quite a while... maybe transitioning would just be fun... nice to have a change every now and then, afterall.
 


Radiotherapy itself was relatively uneventful; quicker, I'm getting the hang of 'wriggling' myself under/in the mask to a position in which I can breathe and which feels somewhat more comfortable; think I oughta really have it nailed, by the time its tomorrows RT.


Scan then the pause... then the radiation.

Wen they came in to remove the mask I was a bit disorientated! - Yeh. I'd been zenning out real good. - groggy, just about asleep! - quite why I can't sleep in a bed, at night when I'm exausted and tired, but can, in a noisey CT scanner, and then RT machine, whilst in a restrictive awkward, mask, is beyond me!


Oh. Also mentioned to Dr, in consultation about sleep; have new funky tablets to try... less sleeping tablets, more... sort of pre-med thinggies... I'll see if they work. apparently they work better with booze, so might have to pop to the pub again soon.

Ate far too much Chinese takeaway for dinner; I was just so hungry today!

Tried to walk to hospital; got tired about half way there; it was too warm; got bus the rest of teh way; but did walk all the way home ; about 1 hours 40 minutes walking in total


you know that more weird I said was left to discover?; I think the menapause certainly counts as far as I'm concerned as more weird

If your Grandmother really said that, I'll eat my hat!*

*I don't have a hat. Will a bag of salt and vinegar crisps do?

Of course she didn't say it! she was... just a normal regular grandmother... and never said anythign particularly remarkible.... that I can recall... but I like to eroniously attritube strange sayings to her!; useually involvoing bukets and eels... err... eels and buckets... yeh. bucket sof eels... soft ells in a elf bucket of rubberised footprint yeilding swallger reminants; brushed liberally with butter salt and several times enthrawled to the side of a yello duster, called Fred. If I recall. roccretly.... rocket yeh, I recall rocket; rocket Ron... wonder what happened to him, when George went down... Bet he's still somewhere.... hmm. actually he may have died; I think it was the barmaid what did it. or. actually. no. that was a differnt universe I think.

hmm. keeping it weird, keeping is surreal, think of it all, in a big buvket of eel

That comment about the swollen testicles would remain in my memory too, I must admit.

We've since come up with a nic name for our... OK, my haemotology Dr (she's a registra), which... I can't write here - you just know one day we're gona let that nic name slip in her presence, or when nearby another Dr or nurse - the nic is... basied on the Drs's prefernce for large testicles hence her disinterest in mine - mind, this is the dam same Dr who told me I should wear looser fitting knickers; I swear.... she's a large lady; she was just .... envious of my size 14 panties... far more femanin than anything she'd get away with wearing

Something I'd not picke dup on today; the Dr in radiology, W thinks he's a wee bit... uncomfortable that I'm gay... maybe... - just an idea W got, - I don't getn to pick up on such things really I've been very good of late... though... as I have to half strip to be irradiated I've been.. basically 100% dressed gender appropiately.... and, not even wearing my chainmail due to having to go in the scanner etc, and not wearing the collar etc., due to the hot flushes I'm still nonnormal underneath though

Well... just took the new magic make me sleep tablet, after taking m normal melatonin reset my sleep clock tablet an hour or two agao.... guess I oughta go try sleep ... W's dragging me to bed

Your grandmother would appreciate some of the things my Old Uncle Olaf used to say.


Like,"A chicken's eyes are only this --||-- far apart and even it knows when to get out of the rain."*


That idea of getting your various health care providers to communicate is a good one. Are there things like Advocates in the NHS? While I was at MD Anderson Cancer Center, I was informed I had access to an advocate who was independent from the hospital who would act on my behalf for any concerns I might have. I never needed it but I was glad they were there.





*I have no uncle Olaf. This was said by some crusty old fart I worked with one Summer 30 years ago.

Advocats... no idea... not that I've been told; its difficult enough to get the seperate bits of my cancer gropu to communicate; lymphoma is a oslid cancer, hence oncology; but its also a blood cancer, hence haematology; I was involved with the chemotherapy division of course, now with radiology; no follow up coming from chemo-division; tried to talk to radiologist about chemo side affects; he say no his thing; but doesn't say who I go speak too.

I just don't care anymore. about anyhitn.g - just winging it TBH. too zen to get wildly annoyed with their incompetant communication, or lack thereof. - Dr yesterday didn't check any aspects of the new drug he prescribed; so I did that on getting home.... Bit on the 'edge' of whether I shoudl or should not take it, given counterindications, but I winged it and risked it. - no idea if I'm ment to take it in combimation with my circadin/melatonin or not.. - I did...

so so groggy today. horribly so. not sure I can take this sleeping drug thing either, just too groggy post taking it, the next day; and I don't feel like I've slept.

I may go for a herbal alternative. hashish or booze. TBH, I think they're safer, just for this short term period

just ate. must shower; trying to figur eout if I can stand up and coordinate myself sufciently to shower, as I'm still so groggy from the sleeping stuff... - must shower, off to hopsital soon, for bloods to see if I'm male or female and if I'm menapausal, then being irradiatied later this will be... forrth RT I think now. - have a forth ribbon with me, in my handbag; a spotty one!; in honer of my favoriate, haemotology Dr, Big balls T... which is her nick name (obviously not giving her full forename there, instead just the initital )

yeh; W and I have written a wong, song, called 'Big Balls T', which we sing as we near the hospital =- it features our special Elizibethian dead mouse drone. - I do the drone.

right. cup of tea, then I must shower and beautify myself for the staff in RT who seem to adore oogling over my body so much gona buy me some new clothes I think, online later. some nice light blouses and ... dunno... a girl can't have too many clothes afterall... need to remeasure though I think, no idea my chest size now it ... may... have gone up I know my cup size has

Talking to my FAther last night, he agreed, with me, it might be a nice change for me, to undergo transition and be a female... My Dad's more bonkers than I am

I hope you are not that bonkers that you change into a woman just before menopause

other way round!; I'm having menapause... then I'll change into a woman! It could... only happen to me - well did bloods today, interesting to see, hopefully next week, what theysay... I've a feeling my 'normal' balance, hormonally, was never vastly towards either the male or female side, anyhow, more inbetween... - so , any testosterone to replace blaance, and missing hormone, I wanna make sure doesn't go too high, and push me too much towards the male side... - its loverly in t the middle... the waters so clear and warm... and... gives one the oppertunity to be.... on either side of the middle ground, as one sees fit on any given occasion

Yes, but the best of two worlds might be accompanied by the worst of two worlds

have no idea where that came from

I blame you, Søren Kierkegaard, Albert Camus and this Chilean

To be honest, I am guessing my 'normal' homronal state, was ... fairly balanced, with a slight .... bent towards the male end of the hormones hmm. and before anyone picks it up. yes. bent being the optamin word
I'm guessing, the reduced err... amount of endochrine tissue shall we say, producing testosterone means the balance just switched over sufficient enough to then drop me into menapausal symptoms, as the female hormones; FSH and LH were proportionally higher in my bloods

all speculation of course, partly will know when the bloods come back; but won't be able to say for certain, of course, as I never had my FSH and LH and testosterone measured back before chemo started. just goes to show... there is always more wierd left to discover.

This reminds me I have to research why my chemo (Methotrexate) interacts badly with alcohol. I have been warned that my liver is in danger if I drink more than 5 glasses of per week. But is there any data to back up this claim, do you know?

your on chemo?! I didn't know that! (Methotrexate) ? I'vce had that... as a tablet? - sure it was one of the two or three tablets, I'd have to take, for the few days post-chemo infusion when I was recieving the chemo

So far it hasn't given me any problems, but the thought of bad interaction(s) with alcohol worries me

I must have missed one of your journals or something or my stupid not working barin jut forgot - most advice I saw, during my chemo, was to limit alcohol; on basis that the liver is stressed out enough, ahving to deal with the high workload, of processing the chemo drugs, and breaking them down, without the extra stress of pushing alchol through it for processing too... moderation is probably not a bad idea mind.. - To be honest after a while, once into my chemo, I didn' t feel much like drinking anyhow, as I was just too tired for going out , so if I did drink it was like only a couple of pints of beer at a time really... with a few notable.... and rememberable exceptoins

Think I'll lay off the booze for awhile just to be on the safe side.

I'm taking Methotrexate for a skin condition (psoriasis) and it's no big deal. Nothing to do with my cancer which seems to be a closed chapter (touch wood)

I found this thread to be very soothing. I take 12.5 mg Methotrexate every Tuesday and have never had any of the side effects mentioned in the thread below (hair loss, nausea) and my liver numbers have never been alarmingly high so I think that I am on the safe side. Really relieved after doing this research

http://patient.info/forums/discuss/methotrexate-and-alcohol-73101

The one thing I can certainly say, from both first-hand experience, and of extensive talking to others, undergoing all kinds of chemotherapy; is that you can't generalise.

The one thing; for CERTAIN my consultant told me, before chemo;

"You WILL lose your hair" - nearly two months post-chemo; and I've still got hair.... true, its a lot thiner than it was; but I never had a single proper bald patch, or indeed lost it entirely!; everyone else I've come across, underoing my ABVD chemo; including dozens of chemo friends, online; all lost their hair!; I didn't.

Simularly; very very rare for anyone on my chemo to excape really bad nausea, and vmotting; I never vomitted, and hardly ever felt the slightest twindge of nausea! - they interact so differntly with everyones body; depending on the patient's differnt genetics, state of healthy, other factors etc... - play it safe, is my best advice; but don't remove yourself from 'life' to be ver cautious; just try guage what your body syas!; OK; I did the experiment; going out sinking 7 pints, then 6 cans guinness, like in my olde days... nah, that wasn't a good idea whilst on chemo!; but, a couple pints... fine; and now, during radiotherapy, post-chemo, I can go up to four or five pints, so long as its not rediculusly strong stuff, and I'm fine. - I'm not always so sensible moderating my physical activity though; the fatigue thing, and lack of stamina is really peeing me off - must get on; doing DIY today! now on a tea break damnit! (yeh, bit peed off I got that light headed, so quickly into taking down the old curtain rails and curtains.... gona bash on with the new rail soon though...)

Too right

First time I was on Methotrexate I didn't touch alcohol for 6 weeks straight, but then drank like I used to (i.e. as a ) for months to check what might happen.

The answer: Nothing happened. Even when drinking on the same night I would take the meds I felt not a trace of nausea. And I kept all my hair. So why worry about my liver?

After some time my warned me that my liver numbers had risen, but that would probably have happened even without the Methotrexate. I really drank a lot.

But after lowering my intake considerably my liver numbers went back to normal and I think I've got everything under control now. I try not to drink alcohol from Monday through Thursday and take my meds Tuesday and that seems to work well for me.

I may have mentioned before, that I found out grapefruit juice interacts weirdly with some of my meds, so I stopped drinking grapefruit juice and that helped lower my liver numbers also.

Yeh... grapfruit juice is a wierd thing; interacts with a lot of heart drugs, especially ones for BP I seem to recall; my not quite a sleeping tablet, tranquiliser thinggy tablet, also interacts with it Mind, it also said it intereacts with alcohol... as does my melatonint... - last week I never too the melatonin unless with alcohol, as I took my meds for the evening in the pub each night didn't seem to make much/any differnce.... with the tranquiliser thinggy, alcohol is just ment to make it work better, which seems to be a good thing to me - mind, I'm still looking at teh tranquiliser rhinggies, and thinking I might just decide to double my dose... I'm really bad at just self medicating - but I have read up on it, and know at even my current dose, doubled, is still half the recomended amount of it, for an adult so I know I'm in safe limits there... - what I can't find is if there's any interaction between it, and the melatonin/circadin.... - wasn't until after I was scripted the new tranquiliser, I realised the Dr at hospital, woudln't know about the melatonint, I think, as its GP scripted I hate being on medication err.... and now I can't recall if... yeh... yeh I did take some hydrocortisone at like 6 I think stupid damn memory...