Recently diagnosed

Jakki!;

Think I’ll have to blame chemo-brain (yet again; wondering how many years I can just keep that as a catch-all excuse, even after chemo?) Seeing you write it again, I must have read your earlier reply; I recall your record setting, out by 12.30!

Its always the gap for me, between bloods, getting results, seeing consultant, and then, just getting a space come free, in the chemo day ward, that creates the problem.

Basically, they seem beyond capacity, at least sometimes, in the room where they deliver the infusions. Not just to fit people in, but, its so crowded!; dangerously so I think, really.

But. We got it done…. Eventually!; I think half my feeling really ill, from the waiting, was just my endochrinology stuff, ‘kicking off’, as, well, basically I just got more and more angry, annoyed and pissed off; not helped by the remaining paranoia and anxiety left from the horrible nasty zopiclone sleeping tablets, I took the few nights before.

Energy waining a little now, contemplating a shower to wake up (instead of bath), or just giving in and trying nap, or at very least have a doze/lay down with my teddy bears…

Hoping I can muster the energy and brain capacity later, plan to make a cheese sauce, and use up the last two already cooked decent bits of bacon from the butcher, to make cheese sauce to throw over some left over pasta, from a couple nights back, from a …moderately sized dinner, hopefully early enough, to then warrant my having a meal/supper later; again trying to space out my calories, to maintain a healthier blood sugar balance, whilst I’m still not getting anything sorted with my endochrinology; it’s a good month since some doctor, in passing mentioned I’ve got hypothyroidism; and then they did nothing about it. I’m guessing that can interact with my Addison’s thing, from my adrenals, and, still not had any come back either about my penitious anemia, and they mentioned that at least two months ago, and forgot about it. – not helped, as I didn’t even get to see an oncologist in clinic yesterday; the Dr I did see didn’t even introduce herself to me, so I’ve no idea what she was/is, in that respect. – then I just briefly saw an on-call Dr, who they rushed in to check my chest/lungs to make up for the Dr in clinics failure to do so, in the morning, so the nurses could give me the bleo….

Feeling a lot more relaxed aobut it all today…. And back to my useual flippant and silly-self, despite the stupid pharmisist selling me a useless thermometer earlier.

Onwards and upwards; to insanity and beyond.

Fiance and I earlier, contemplating the idea of just eloping this week, and getting married. However….. I think I got told, in no uncertain terms, by my Swedish partner, that if she isn’t there, to prepare me, and give me away….. I might be in serious trubble! – oh….. it was a nice fun idea to contemplate for a few hours… but, it might make sense to wait until chemo is over, I guess, and perhaps even invite a few friends and family along! As nice…. And silly as the idea of eloping and doing it, in semi-secret might be!

Hope everyone else is doing OK, and combating whatever nastyness via whatever means possible.

Mark

Phil; oo... your nearly inspiring me, with your DIY!; I've been meaning to get back to some craft stuff, for ages; was a bit worried with lack of finger-sensativity, I was getting from the neuropathy, but, now that's not so bad as it was.... considering doing a couple leatherwork projects that have been on hold now, for months.... maybe if I've energy, and time, over teh weekend, might start measuring and marking out, ready to cut the leather, and hunt about for the metalwork I'll need to have, for fastings etc.... certainly give a sense of achievement if I can bash out the bits there, I wanna make.... - both basically for giving as gifts too, which will be nice to do....

Mark

Blind fits, carpet laid in bedroom so son moved in hooray!!!  And a fish supper!!

Wow! way to go! more than I've achieved.... in weeks! - at least I  eventually got round to showering.... blimey, that feels better! even if I am probably showering, and bathing way too hot; it just so relieved the aching for a while at least.... - and all moisturised afterwards, of course....  just considering a light supper, maybe, and then perhaps, even, an early bed.... Feeling tired I think, and not just chemo-fatigue.... Quite supprised how well/good I'm feeling, after the chemo yesterday; just so exausted by that long day i think, perhaps moreso by that, than the actual chemo itself; though, at the time, last night, I was pretty much convinced it was the chemo hitting me a lot harder, hopefully I was wrong, and it was just the long day whiping me out... time will no doubt prove, one way or the other...

Well done, Phil! Phil-D-I-Y-er! Shall be your new name! 

Mark, glad you are managing to separate out chemo tiredness from tiredness, I'm just tired lots, think it's time of the year( oh and we lost that hour when we changed the clocks, maybe it's that?) 

have a good weekend, folks, 

hugs xxx

Hi everyone :)

Hope you're doing well today!  Went to work. Knackered now but I'm glad I went in!! 

Had a bit of a worry last night because my legs got itchy I'm always so worried when that happens because pruritis was one of the first signs of HL for me. I was so worried. But the chemo hotline were so good and reassuring... Like it was v v unlikely given the good PET that it was anything but a random reaction unrelated to HL. Phew.

Watching a film now . 

Mark - it gets worse for sure, like super cumulative! Don't put too much pressure on yourself okay? Just do what you can, and continue being surprised by what you can do :)

Phil - good work, sir!

Off to Bristol for the weeekend to see my nan. Got dentist pre radiotherapy appt set for next tues, so no work til Wednesday...

T

Moomy; I find it so hard knowing what my body's saying about  anything, at the moment!; seperating what is chemo side affect.... what is just because I'm 'ordinary tired', or 'ordinary hungry', then, I guess, for me too, the added fun of whatever the heck is going on with my endochrinology, right now, seemingly entirely seperate from the lymphoma/chemo; Though, its certainly all crossing over and mixing in variously odd ways in my biochemistry!

Of course, some maybe very good news today; Fiance had someone come round to look at his house; a more serious buyer than the last few who showed interest; and that may mean, we're moving even closer to living together... which... well... I just can't wait for us to be living together; just being with him is better than any drug to deal with chemo side affects... and... well, a whole lot more besides!

We were, I think quite seriously, thinking about, of all things, the last few days; basically eloping, and just getting married this week. - which, I have to say was a very appealing idea; although, the more we ... thought about it, the  longer the list of people we'd annoy by doing it like that, became.... - as apealing as it may be, I think we'll have to wait, and actually plan something, and invite very close friends or family, or we'll make some people really rather cross.... and, perhaps waiting until after chemo, is a better idea, in some respects! for once... I think I'll.... we'll have to be sensible.... damnit!

Not sure I'll be up my useual late night  self, tonight, and maybe I could sink into a few days or even more, of something approching normal sleep, which would certainly be an enormous help for me right now, with energy, fatigue, and all kinds of things....

hope everyone else is OK this evening.

Hugs

oops; sorry, Tom; just saw your reply!;

well, I've been, as far as I'm concerned, so supper lucky, so far; if it is starting to really notch up; and accumulate; I'm again lucky, as its left it right near the end for me, to do so; only one cycle left, two more infusions!; and...... 'try not to put too much pressure on myself'.... nah... really not sure I can do that!; but, with one month left to go.... reckon i've enough bluddy-mindedness, and reserves of energy left, to entirely force myself through whatever it wants to throw at me... -yes. in what will almost certainly be a very stupid way; and leave myself a total wreck by the end!; but... pah... i'm just built that way, I doubt i could stop myself doing  it wrong at this late stage in procedings!; though, even I have to admit, the likelyhood of me making it to the pub, before the end... now.... or just drinking any more booze, until its all over, seems pretty remote... perhaps I've got a bit of sensibleness left in me afterall!

Mark

Good morning all,

Phil, well done with the blind hope the fish supper tasted delicious (ew got yuck mouth just thinking about fish and chips just then!) does anyone else get that after chemo where even the thought of some foods sends their mouth horrid?

Tom, well done for still getting into work mate, I am not sure I would manage a full day with the pickles at my work at the minute. I have spoken to my head and he is being amazing, basically said whatever works for me they will accommodate, phased return is fine. I will probably start officially in September but want to spend some time in July getting back into it. I have so missed work, can't wait to get back!

Mark, what would be your dream wedding?

Well, very little planned for today feeling a bit pants, think a walk and then a sofa day may be on the cards. Perhaps a geeky board game.

take care all

Jakki xx