Recently diagnosed

Hello all, 

Thank you all for getting back to me regarding work - very reassuring. I'm really hoping I'm able to work a bit-I love my job!

Jakk, sounds like you got very full on job! But must be rewarding! 

 My work has been very supportive, and they are happy for me to work from home, but I would like to go in the office occasionally! 

Tom, the right person will appear in the least unexpected moment - I'm sure of it! And I agree with you Elena, being with a wrong person can be as bad as having a desese, that is difficult to get rid of....

Jakk, hope you feel well after your latest chemo, how many left until you are done? 

Take care all x

Great that your work are being supportive, I think that going into the office when you can is a great idea, I wish I could have gone in on my good weeks as it would have given me some normality. Just make sure you don't over do it. Tom seemed to strike a good balance.

i have 2 more chemos left 10 done. Do you know how many cycles you will have yet?

Elena do you start next Wednesday I can't find the info on this super long thread?

Oh Tom rubbish that rads are wiping you out, I think you have gone back to work very quickly though lovely, I will have a phased return and that doesn't start until September because of the summer holidays. Have a chat with your work if it gets too much, don't struggle through!

love to all xx

Jakki xx

Tom!;

I've been so lucky, with chemo; nausea I think was my greatest fear, and although I've sometimes felt a bit of what I guess must be nausea, its never like actulaly been bad, or caused to either really feel like I was going to, or actually be sick; I rarely had to touch any antinausea tablets, cetp the onsdansatron, they say I hadve to take, for two days after, one tablet twice a day (I'll finish them, for the final infusion, tomorrow), and I think soem of the premed tablets, they gave me, were anti-nausea, and actually one of them, was ondsanatron too; the one time they forgot to give me the pre meds, I did feel rougher, and more towards the  nausea end of things; the fatigue, chemo-brain (which may partly be the haemorridge I had, anyhow), plus fatigue, an constapation/other digestive stuff, was/is, my worse chemo side affects, plus the muscle and joint pain, and cramp etc... not exactly nice, but, well, copable really, and I  never got much bad taste/yuk mouth, or much accute feeling bad stuff, during the actual infusions. - heck, I've still got hair ; even if I'm convinced after my bath tonight, and brushing out such clods of it, that its all going to vanish, just after the final infusion, just.... because that is sods lore!

Be nice though; if you can get the dry mouth sorted, that can't be nice, as well as the nausea, and stomach bits, from the radiation;  yep; I've radiation to follow, between two and three weeks; more than I thought, or hoped I'd be in for; to compensate for my not making it to have 6 cycles of the ABVD;  largely because they don't like me getting these random infections during the chemo, and because, I've not had Vinblastinm, since it started giving me neuropathy, and I had to stop it, err, after my second cycle I think that was... - I follow their logic; more radiation, as they don't want to push me to full 6 cycles ABVD, partly worried about my reactions, given the infections, and partly worried it ain't haveing the affect, they might want, due to my missing out on the  vinblastin now...  

jakky;
not sure 'feel Ok' about the radiation is quite right; i've a lot of reservations, based on how it'll increase my risk of lung cancer, and possibly heart disease; luckily I'll miss the possibility of hypothyroidism, as i've not got anything to target in the neck; and, I think I'll not get major lung cancer risk, as i don't have any nodes in my lungs to target; though it'll end up hitting the side of my left lung, a bit, from what oncologist said, though they may now want to target the small ones, underneath my collar bone, same side as the armpit, not sure until i speak to radiology; i'll weigh up the risk, myself; but, basically, having heard their logic, and knowing their thinking and reasoning; i'm more happy about it;
I don't like ... not knowing and I do like logic and reason.... - at last they've decided to share a bit of their clinickal thinking about my case, with me.; it was because I had the decent doctor/consultant this time, she's.... so much better, and more competant than the other one.... - I'm following her advice, a lot as I trust her, clinically and, just as a person/doctor.
Also had to get consultant to look at what I thought might be a boil on my groin area, may be an ingrowing hair, didn't think much infection risk; just said I should wear looser fitting underwear!; and trousers... oops! and I've got to apply barrier cream   (vaserline to it, to stop abraision, and stop me wanting to itch it; which seems to be working fantastically, after only a day doing so, now).

Jakky; I kinda cry, and feel the same, when I feel how I've ... sort of been so grumpy, and nasty to William, a few times; I did today... I so hate doing it, when I realise, after I have... -
I think a lot of it, for me, is I get like that with him, as I'm so tired, and then chemo brain stops me thinking properly, so I don't understand what he says, and some little bit, just... sort of makes me explode... over some really stupid silly thing; though sometimes, over something I do really think is important, but which he's not understood, like he doesn't quite 'get' my need to do hygine as I do, steralising etc, and will just do something, silly, ike today, he unpacked the baguette we'd bought, that I was about to eat; took it out of the packet, and put it on top for me to eat; and I know he'd not cleaned his hands, or put alcohol gel on, as I had, after we'd used the toilet not long before, and also, he tends to do any door opening etc, so had touched chair backs, doorhandles, or push buttons etc... then touched the baguette... I don't know why he doesn't seem to get it, he's not stupid, just not from a science background like me, adapting to severe hygine/steraline thinking wasn't a hardship or like taking any thinking for me to automatically do, I guess.... silly I know...


Tom;
 you'll find someone!; Cancer isn't a hinderance!; look how I pulled the night before my last chemo in the pub!;
heck... I practically used the chemo/cancer as a pulling technique!; if only I wasn't so tired.... and having to be up early for the chemo, yesterday, I'd may have taken advantage of ... what was on offer...
I think she'd only have been too happy for the pull to have involved both myself and William! -

heck; it is often out of the blue, it'll just... happen... a few years ago I'd been... celibut, for what seemed forever! then, randomly foud William, or he found me...
and... then... out of the blue, and, no, really not planned, or anything, last year, and, well, heck I'd never honestly thought of polyamourism.. and, suddenly, a good friend of a decade plus, and I... and suddenly, I'm in some crazy poly triad with William, here, to whom I'm engaged, and the fabulus Karin, sadly all the way over in Sweden... - well I say sadly far away, its a fabulus holiday feeling every time I visit her too...
- just sadly not been able to travel now, for ages, due to the chemo/cancer.... and she' s so busy with work, and now buying a second condo, the other end of the country, due to work, she's not even been able to visit, whilst I've been ill... Actually, the cancer thing, just worked out aweful timing for me, as I'd only just really became partnerd with Karin, as well as William, and, well, its now 9 months since I last saw her, and that... kinda really hurts a lot actually... - and, all this in my thirtys, your young! - yeh, I don't think my cheno day unit at Cambridge, has had anyone quite like me in it before... I think I'm possibly their first, maybe only ever, blind, poly, collared submissive, gay/bi/queer chemo patient... my antics seem to entertain them and make them laugh, which is no bad thing... - So going to have to send a invitation to William and I's wedding, I think to my consultant, and an open one, to the nurses too.. Karin is going to be my best man, or.... some such... so wrong an idea, it just has to be right... that'll take some timing to organise to try get us all over here at the same time...

yes, Tom... that 'clicking' with someone.... but can kinda make the effort of the ... not so clicking dating worth while...  not that in many ways I ever 'played th efield' very extensively... though having said which I met William through basically a dating site, and Karin, I knew first off the internet, from a sci fi website, from wehere we just came friends, before... after a decade plus friendship, realising, we... well, matched rather well. and she collared me...

=Tom your doing work, and radiation!; and, not long after chemo!; I can't imagine trying to do work during any of this! show off!



 OK.

Day after final chemo. oo. the drugs are definatly being more fighty!; doesn't help of course, I only slept for one hour last night. up early, to get ready, for hospital again; endochrinology then eye clinic.

going back to hospital, day after chemo felt weird!; I found myself, checking the position of my line, as I walked about!; of course, I didn't have one in!; and walking striaght past the cooridor to the chemo day ward!; very odd... we nearly turned down it by mistake!

wow!

Saw endochrinology professor again; now. there is a real scientist, and, he's so got the measure of me; no messing about, he knows my back ground in science, so we can get about a million things mor ementioned in a sentence, than when I'm having to digest and try figure what, more generalised terminolgy etc, actually means; sadly,  of course, it means William hasn't a clue what we're talking about, so I have to explain, to William, after, in more, general  terms.

Great news, and a heck of a boost to my mental processes!!!!

I was right, I diagnosed it correctly, within a months of having a brian hemmorridge, and whilst just having started chemo; I said it wasn't Addison's, it was secondary addison's, and that was confirmed today! (caused by damage to my pituitary gland, in 93, not as a result of autoimmunity).

Great news for several reasons; means I've not got autoimmunity, and hence, not prone to diseases including diabetes, systemic lupus erythematosus, celiac disease, etc, which one would be if I had Addison's disease, 'proper'.

also, bloods back on the other stuff; I don't as they thought, have penitious  anemia (some confusion, therefore, as to why I'm taking folic acid; we can't even figure out who scripted that for me! - may have been someone in oncology).

Additionally, despite being told in oncology, ages back, that I have hypothyroidism, I have no evidence of that; that was one of the antibodies/immunoglobulins they've measured for  now, so, quite  solid evidence, I've not got that.

Now, clearly my adrenals ain't 100% working, they're output isn't normal; now due to have proper 'stress check/test' on them; but they want to do that after I've done the radiation; so, plan is to do that about september; I'll keep up with hydrocortisone, during now, and the radiation, to help body cope with physical stress, then reduce my dose again, and they'll do the stress test; basically, see what the actual output of  cortisol is, by the adrenals, under 'normal' circumstances; taking the steroids now, both those for chemo, and the hydrocortisone, tend to send the adrenals to sleep; so they stop producing cortisol,; clearly they're weren't producing 100% of what they  should before, I started in to the medication versions of the same, steroids, so, they want to get a measure of what/how low/rubbish their background, normal level is, to determine, what I'll need, in terms of lifelong medication, for it... not much I guess;  then I can start eating normal again, and  reducing my calory intake, and loosing weight!!!

looking up!; chemo gone! complete rmission on the lymphoma/cancer, after 2 cycles, back in, err, march? and, no autoimmunity, or stuff!!!!

Looks like, basically,  since 1993, I've had somewhat lower than normal output from my adrenals, of cortisol and maybe the other couple less significent hormones, one misses with both types of Addison's,; just, until I got the lymphoa, I'd  never been stressed enough; physically or emotionally/mentally, to trigger, a  situatio, where being a bit, low, mattered; that happened, due to the lymphoma, night before my staging scan; evidence, if anyone wanted it; just how incredibably stressful this   lymphoma thing is!; a lot!

just feels a bit odd now; so much good news, so much... and... yet here I am feeling so damn terrible, due to the chemo!; yeh... I can think more logically, now, and I know its all going to pass, and everything, is going to be oK. no. everything is going to be amazing. I'll get better, fitter than I probably have been in years, and, William and I will be married, and Karin and I can continue on, where our new relationship began, so swiftly to be disrupted by this damn lymphoma hinderance. W and I may go ahead with our plans, and move, from Cambridge, and I guess we'll have Karin visiting a lot, or as much as she's able, and either I, or perhaps both I an William, may be taking a fair few holidays over in Sweden. and.... I can stop all this anoying sterlising stuff, eventually, and not be so retentive about damn best before dates on food!

The affect of the haemorridge, is wearing off big time; I think that happened last Sunday; I just suddenly started thinking so much clearer, quicker, and my confedence returned no end; guess I'm still getting some chemo  brain, and hopefully that can start to vanish now, as i've no more chemo, to top up the loverly cytotoxic agents, doing so much stirling work inside my somewhat beaten/bruised, and sore body... and hopefully that fatigue can pass; not looking forward to more fatigue with the radiation; do i expect to get the same kinda symptoms I've got from chemo; I,.E,, I'll likely miss sickness, as i did for chemo, but get fatigue, as I got that from the chemo... or are they such differnt beasts, its just gona be a complete random thing, of what i may, may not get... - not looking forward to the unknowns , really, starting the radiation, some time soon...

Couple of outstanding, things to talk to GP about;
going to sort GP appointment Monday;
I've a major problem with my blood pressure (been fine all my life); now its gone really really low; and low in particular when I bend over (positional low blood pressure); I feel better when I'm doing stuff, as it rises, even though with fatigue, I don't often feel like doing much; but, today, walking to hospital, and yesterday, walking back, felt so good (about an hours walk to or from hospital)  

neither oncology or endochrinology think its 'there baby', - so goign to get GP on that case;
plus, still wat to follow up, big time, on my haemorridge, way back now, at end of january, when i had the grand mal seizure, that put me in hospital, just before I started chemo, and which whiped out my memory back to September 1St, last year.
Also, can add into that the petit mal fit, I had, err, a week ago Wednesday I think it was... - so hoping to get back into neurology clinic, to get things there moving; i say hope... I'd really like to have less to do with the hospital, not more;
but, need to get it sorted, make myself well, and fit again, for Karin and William, they're the most important things/people in my life. - Still not  convinced I'd have bothered getting lump under my arm pit checked out at all, were it not for them, and even less convinced I'd have even bothered starting chemo/treatment, had I done that, if I didn't have them. - self distruction would probably have just ensued... crap I know... but...

so. all in all... things looking up. Endochrinology; i thought I was really in for something more... time consuming, and possibly treatment wise, a lot longer, and messier, than the cancer stuff, wtih that, so, wow,. that is a big weight off the future, I hope/think.

looks like I'll be ongoing until at least September; but by then should be really feeling clear of chemo, and hopefully also of the radiation, and returning to some sembalance of 'normal' physically; already started increased walking; I plan on walking to and from hospital every day, with William, when we have to go their for my radiotherapy; that must help get the fatigue, under contorl, and sorted, plus increase strength, and fitness. Still may enquire with GP, about getting some more strenerous  exercise too, just to move things up a notch, and along faster;  already improving my diet, now I've concentration back, and thinking better, and more confedent, as I used to be, about cooking;

did a chicken breast stuffed with cheese, and wrapped with  streaky, bacon, for  dinner, with salad... damn gorgeous!

hae all the ingredients too, after the visit to the butchers today, for a full fry up tomorrow!; well... kinda healthy, not like it happens every day!

bashing fluids  big time, to hep with the final infusion; and at least one litre of which is decent, not from concentrate, proper fruit juice, having a mixture, some orange, peach, apple, etc, to try get a mix.

Still mainlineing herbal teas!; hope I can retain some of the new found increased senses of taste, and suchlike, and scent, i've seemed to develop (chemo side affect?); though, some normality in taste, night be good too, some things, just... don't taste quite as they used too... all very odd, though, nothing exactly tasting horrible, just ... differnt....


hoe everyone else has had a good day, and evening; was busy as william was here all day, and we spent most the day at hospital; he went home after that, but is back sunday; want to get stuff done in house tomorrow, so we can have as much time as possible together, whilst he's here Sunday...

must think about bed soon. had about four hours, the last two nights, and only one hour was last night... plus the busy day at hospital, and walking back...  - oh, eye clinic said no sign of infection in eye, just dry, lots more drops they gae me, and also said same as oncology; so off to get funky pair of sunglasses, Sunday, plus the useual visit to lush, to stock up! and, want to find new pair of looser trousers... something different from jeans, just to please my oncologist, Tracy... Think I'll go for something weird.... maybe velvet... - I think I'll invade the second-hand shops, and flip through some racks of female trousers... just... because... its the kind of thing I do... though I'll have a general see what is about... I'm so much more a jeans person... but... anything to please and somewhat ... have a change.... might as well do something utterly differnt... so long as it won't clash with all the ribbons now; added the final chemo white surrender ribbon, during the chemo, yesterday!; not sure I could fit many more on! 21 foot of ribbons, in total, now, 7 differnt colours, each three foot/1meter long, 1 inch wide, all differnt colours! sometimes I tie them in bows, sometimes, they just hand loose, sometimes its a mixture, depends how they stay in, or get messed about over the day... Perhaps I should get coloured sunglases, never owned a pair before; they're to help keep the eyes less dry, stop wind etc, and dust/dirt getting in, I think, less for actual sun protectio given I'm blind, that really isn't an issue....


OK... must think about a final cup of tea and bed! hope everyone else is safely tucked away, in bed and not suffering, from side affects, or worring about things too much.... - looking up for me, I hope the same is true of all of you soon, or before long... its certainly a long, feeling, at times path... but, i think we'll all ind the ending, soon, and find it so amazing.... we're all coping in our own ways... however odd they may even seem to us, indeed, once we're truely through it all... - I wonder how one decides it really has reached the end... i've a feeling it often ends up a bit broken, as we near the end; no single, 'end point' as it were, in some regards....

mark

Hi Mark

One suggestion about the folic acid: was it in response to the developing peripheral neuropathy? Just wondering...

Ian

Hey Mark, you are sounding really positive, great news on the Addisons, you nailed it! I don't really get all the science (I have a BA not sc!) but the secondary sounds much less scary.

Well chemo over and lots of plans for the future, we do need to see a picture of these ribbons, get William to take one on Sunday. Hmmm folic acid, you're not pregnant are you?

I plan to move a little more today than yesterday, a 40 minute walk in the Eve was as much as I moved! Need to get up and about a bit more today as I know it lifts my mood. 

Tom, you get the weekends off radio right? If so enjoy a bit of a break, perhaps try a nice cold cider or beer for that throat or perhaps you could have a cheeky G and T for me.

Ian, is it Monday that you start your radio? Good luck with that and let us know how you get on.

Phil, you ok my chemo buddy, we are still trucking, guessing you will be having a cricket fest this weekend. I wonder how Moomy is getting on, looks like a slightly better day today.

take care all Jakki xxxx

Hi everyone

mark... Well what can I say? You are one amazing being! You all are! 

I am aching and aching from the portacath but never mind, start chemo on Tuesday. Is it weird that I am looking forward to it? Just emailed work to let them know, so strange writing to tell people about what has happened. I work in a school so it's been half term for me but not quite the half term I normally have!

Tom, I didn't do the dating thing as I was always in. Long term relationships, but the dates in between always made for hilarious memories and stories with friends at the pub so all is good!  Plus you won't know the right person until you have the misfortune of  testing out some others, and by testing I just mean dates no more! But all is good whatever you do. One life  and all that 

Think I am coming down with a cold caught from my babe I so hope this doesn't put chemo on hold!! Eating lots of blueberries! 

enjoy your weekends xx 

Jakki;

Basically, as its secondary addison's, its not autoimmune; therefore I shouldn't be at any  heightened risk of virtually every other autoimmune disease going; which is good!; also, it means I had this, lurking in  my body, since 1993 or perhaps very early 1994; my body was capible of coping with the level of disease I had, for, like over twenty years, until the night before my staging scan for the lymphoma!; now I must have had some stress in my life before this point; exams? friends dieing, lovers dieing, breakups, etc., etc., - but, seemingly all of that I was able to cope with, without the level of disease, kicking in sufficiently to  cause the grand mal fit (or, as far as I know petit mal fits);

Basically; that is how stressful lymphoma is!; so, none of y ou can feel any sense of  failure at feeling stressed out with this beast of a disease! its that* damn stressful to the body!--

All of which means, hopefully, once I'm fully over the lymphoma, through the radiation, into/through some level of regaining fitness in geneal, etc, then, quite possibly I won't need daily medication even, for the  secondary Addisons; just have a handy supply of hydrocortisone ready, to hand (maybe even the injectible version too, or instead), - then, should I find myself under great stress; either physical, or perhaps also mental/emotional; I can pop a tablet, shot myself up with it, and avoid certainly a grand mal (E,G., if I run an infection, as I did a back on Sunday 10th, when I had to stay in hospital; I doubled my hydrocortisone intake, to let the body have enough to cope with the 'stress' physically, of fighting the infection; which is clearly more than the stress from such would be normally, as my bloods are low, due to the chemo).

Anyhow; that is how I read it thus far!; sadly, at the moment, my natural background level of functioing for producing the adrenal hormones, is way way down,; basically the organs decided to stop making any, as I'm artifically sticking teh substitute hormone, hydrocortisone in, via the tablets; which I need to do for now, to ensure my body can cope with the stresses of the treatment for lymphoma, etc; once that nears an endm I'll gradually reduce the tablet dose, down, until the adrenals kick back into their level of production again; and we can measure t what that is, and see/guess/find out, if it is a sufficient level so that I don't need to take a daily dose of hydrocortisone (guessing, then, if I do, I'll be on some microscopic dose, probably just one tablet, even 1/4 tablet, per day, just to 'top my levels up').


Oh. my Positivity is through the roof again!; despite feeling pretty .... utterly knackered again today!; chemo-fatigue, bein worn out by two consecutive days in hospital one of which was for infusions!; plus, - think I've totted up 8 hours sleep now; over three nights!; that is so not enough, especially when this is over my  infusion period!

Just had the most gorgeous, full fry up.... I'll not go into details in case anyone is feeling less than un-naulsea-like.... sorry! I'm so happy to have missed out on ... if not all, then certainly 99% of that particular gambit of the ABVD.

I do have a picture of the ribbons, but not with all of them (isn't m y profile pic on here now, one of me in front of a bus, with ribbons?: that was a couple days before the general election!)

I'll get William to take a pic Sunday, hopfully the sun is out.

Pregnant. everyone keeps telling me I must be pregnant!; all my weird food cravings; eating for two, plus I certainly know my hormones are all over the place; and then; yesterday; I posted a tweet, from clinic, saying, simply;

"sitting in clinic, dilating"

yes. the first resonse on twitter asked if I was giving birth!; it was my right eye dilating, as they'd put a dilating drop into it, so the doc could have as good a look as possible, at my scratched cornea, and very dry eye -

these new drops are even better than the last; more viscous, so they last longer, to keep it moisturised, which makes em a bit tricker to get in, especially as I can't see, but, I've got the more watery ones too, so I can chop and mix. - gona have fun Sunday, picking out some suitable sunglasses, to help protect the eyes from drying out, when outside in wind, and sun, etc- half tempted to go for something truely rediculus (so long as they're full coverage to protect the eyes), or try find ... I don't know; I've never worn sunglasses in my life, I have no idea about differnt styles etc... will just see what they have in town.... that looks vaguely affordible...


Being outside, walking (even ultra slow, with probably no actual exercise benifit,), is just... it picks the soul up, if not the body/physically too; I've always loved, and had to walk, our family never owned a car when I was a kid, so we walked everywhere, plus walking for 'fun', hiking etc. hence I'm going to use walking as one of my major get myself back to fitness things... - even when I've had to 'force' myself to go outside, because I was feeling so low, rotten, tired, I've always, felt better for it, even if I've hit a dizzy/faint feeling spot, half way through (that is probably just my blood pressure thing, whatever the heck is causing that....)

Hope everyone else is having  a relaxing, productive, start to the weekend,,, (delete as desired!) and as symptom/side-affect free as possible!

I was planning on some major tidying; shigting a huge massive pile of junk, including furnature from the spare room, with an idea of utterly rearranging my bedroom, and potentially moving stuff from my room into spare room; then sneakily going out some time this week, and getting a new bed/matress and replacing the horrible thin curtains in my bedroom - something nice and new, for the bed, and hopefully more conducive to sleep with light protection from teh street, on the curtain front (yes, the light from the street probably still affects my sleep, despite my being blind!; damnit, why doesn't one always get the advantages that certain disease/conditions should bring!).

mainly, so, basically, when the radiation starts, and William may as well just stay here the entire duration; perhaps just pop back to his, to check on it, each weekend, make sure the building is still standing....

well.... not sure I've really got the energy or strength for doing it... but... if I wake up soon, I'll probably go do it anyhow... oughta be exercise if nothing else, just so long as I do keep an eye for how faint I'm feeling from my stupid low blood pressure... - see, if I still smoked, bet my blood pressure would be  fine! haa! nah, only kidding, no chance I'll ever return to being a smoker... - just the smell of it, on other people now, walking down the street! ugh! yuk! that used to be me! so not gona smoke again. ever. - gona feel very weird when I next go back to my Dad's, though, he's a heavy smoker, as is my step mom, and, well, I can't think of  many people who ever visit the house, who don't smoke, truth be told!; its probably only the dog who doesn't, and she's probably got secondary smoking diseases! damnit! - OK, I only really want to go back to se the family dog, trluth be told!

ahh. stop it... I always write far too much... sorry... err, can I blame chemo-brain for that? Hmmm. I guess at some point, I'll ahve to stop using that as an excuss, for just about everything!

"but, I need to stop in teh street, and eat a hot dog... its my chemo-fatigue"; etc., etc., hmm, maybe I can  drag that out for nearly a year.... maybe not!


elmambo
 - no!; not you* all are; we all  are, you are too!; already, think waht you've done, - OK, what we/you have had to do, but, you've done it none the less; your gona come up against stuff, and think 'no way', and 'I can't do this', but you will!

Sorry your portacath is hurting; I was still kinda way out of it, just after having mine fitted, so really can't recall what pain/discomfort I might hae been in!; an advantage to the brain haemorridge.... perhaps! (hmm, nah, not even sure I can swing a positive onto that little episode!)

right, definatly enough whittering from me,

mark

Aww poor you Elena, I hope you're alright!! Yeah just play it safe; we'd hope it doesn't hold up the chemo.

Mark -  you sound like you're doing better! Ugh I'm definitely NOT one of those people who can pull in the pub, though. I'm hideously shy, even when I have some alcohol.

Jakki I was asleep until about 11am today!! OH DEAR. I was so exhausted last night, was so wiped!! Feel better today though - am going to see my friend later on and I will have a beer or two, but I definitely need a water next to me too. 

I hope I haven't gone back to work too early; I got the impression that my main issue was that I had had to go back to work full time (ish) eventually, BUT on top of that I had radiotherapy so I was quite knackered. However, whenever I went back I guess I'd have felt knackered, so damned if I do damned if I don't :). Hopefully next week will be alright. I have 3 days off at the end (17th, 18th, 19th plus the weekend) so I HOPE I'll be fine :D

Hope you are all well today.

Tom

Tom!; believ it or not,  I'm one of those terribly shy people too!; especially when witih people I just don't know/newly introduced too! - She pulled me (and William I think) - actually that is a rather cool pub... its all sort of craft beer now, which I think is the new hip thing, but, actually their customers are .... just the more excentric  end, of what is an excentrick end of town I live in; so.... kinda my  ideal place really; heck I almost fit in... anyone would fit in, its that kind of place.... - and she was most definatly pulling me, not the other way round! - not sure I've ever actually done the pulling thing myself, really, not purposefully or like me starting it anyhow!. well... maybe once or twice, but... that defiantly takes a lot of  booze first, I only had two pints in the pub on Wed night (well, it was the night before chemo!)

As  regards your back to work... yes;  whatever choice you'd taken, woudl be the wrong one!; go back; its too early, not go back... you'll end up languishing at home! not good!; just.... I dunno, try rest as much when  your not at work, and eventually, it might settle into some sort of more sensible equalibrium? - I'm terrible, always trying to do oo much, according to my docs... they keep telling me 'to rest', and I tell them I don't know how. I'm not kidding them, I really don't know how... heck  this is why I get one or two hours sleep a night, despite being so utterly knackered and exausted....
 Enjoy the beer!; I may have to invest in a few more cans of beer, for at home soon; pubs can be hit and miss, sometimes I go and just hate being there, too busy, loud... - damnit, no I refuse to accept that is an age thing!; sure the chemo, as well as playing about with my sense of taste, and smell, has done weird things to my hearing, or hearing perception perhaps I should say; can't stand multiple loud noises at same time (car alarm, near enough, plus radio  on; then someone trys to talk to me, my head explodes!)



Ian; oo, thanks for that, didn't know it might be related to that... its possible; I'll keep taking it, anyhow, and maybe ask the consultant or doctor about it, when I'm in Wednesday clinic;

Just got  letter through today; that  feels a bit like 'moving on'; new referial in essence; moving from Thursday; chemo clinick, to the Wednesday post  chemo clinic  (err, not sure what they actually call it, still oncology/haemotology of course, but more the 'following up' after, than booking in for more, as it was!; looks like they want me 60 minutes beforehand, so I'm guessing they'll be monitoring bloods, which is good; shall give the port a rest, as I won't be having chemo, and just go for my wrist/arm this time; next appointment, I'll get them to use the port, as it needs to be flushed/used once a month, I seem to recall, to keep it working/open, whilst its still in position, and obviously, now, not being used fortnightly for the chemo)

Elena, hope that port settles soon, my PICC took about 5 days to be comfortable, I don't really notice it now and definitely have no pain, not sure whether the portacath is the same? I don't think the cold will delay chemo they pretty much crack on whatever! Make sure you go out and have a lovely meal before you start the chemo. Also, def not weird to kinda look forward to it, it's the beginning of getting better and certainly beats the waiting.

Mark yep just looked at your profile and can see the ribbons, they are fab.

Tom, have a beer for me please!

Had a lovely long walk with hubby today, now just watching tennis for a bit until I can summon enough energy to prepare a chillie. Hubby doing a brick session (bike then run) as it's only two weeks to the triathlon now!

take care all 

love Jakki xx