Recently diagnosed

FormerMember
FormerMember
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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

  • FormerMember
    FormerMember in reply to FormerMember

    jakki- I decided some time ago, long before the lymphoma popped up; and I'm still sticking with it  that, I'm eternally young!  

    - and... sometimes its not the most helpful attitude, though; hence my laying into the booze Friday night! - it just felt right; Thursday I couldn't celibrate, the good news, with a beer; horrible mouth taste!- Friday, yeh, I'd been poked about by docs and nurses, had bloods drawn, almost fell over when I got up; my BP had gone so low!- and, done that all day... then... in the evening...  - just chatting with my lodger.... taking the mic out of each other (largely he taking the mic about my cancer, me taking the mic of his lupus), etc!- just seemed right... - he was drinking dunno, whisky I guess; I'm not quite daft enough to risk anything that strong.... yet!- I stuck to my beer! was a good night though;

    then, perhaps a not so good decision; I decided, as it'd been 7 hours since I took the first antibiotics, I could speed up the process... and so took another dose, before bed!

    I do tend to run on a mixture of over-tired-energy, raw 'insanity', at the best of times... I'm not necessarily very good at restraining myself from continueing it, during treatment... it seems... - like now... yeh... i didn't sleep at all last night... but now I've woke up a bit... - if my mate calls.... I'll really struggle to be sensible and say 'no' to going to the pub tonight, despite... feeling so rough at the moment! - my own worse enimy for sure...

    Oh; and with the hair... - if/when its all gone (or goes enough that I give in and shave the remainder), then I'll go with that.... - some suitably  silly headgear will be gotten, or I can just stick to my leather trilby, or dig out some of my other hats... (think I've a bowler, and a strange hippy thing, with mirror glass and beads on it... that might do nicely)..

    Yes. think I'll definately try for this weekend away, if I /we can; I'm trying to see what they're going to say Thursday; given the meeting Wednesday is two lymphoma consultants, plus a radiologist, and from what the nurse said, I'm guessing we're going straight for the radiation therapy (guess I oughta start looking at researching that, I know nothing about it); and, depending how quick they can 'get me aplace' for it; I may be straight into that, next week; hence, this weekend, will probably be the best bet for a weekend away, for ... some time, I guess....

    but, of course I'll know that, from the consultant Thursday; and, still in the back of my head, I'm not daft enough to think I've predicted this, 100%- half of me is prepared... or at least aware that Thursday's outcome may be them telling me some news I don't want to hear, and finding out that the scan's shown something less than good, and treatment on ABVD stopped, because of that, and there's a spanner in the works, requiring an apprasal of, and change in treatment... Hopefully not, though, of course...

    well. tiredness of last night, I guess with chemo drugs still retained in my system (judging by I'm still getting hot flushes, and funny mouth tastes), so... I may have to surrender..... but never give in... and try for a nap... that would probably be sensible.... and, yet provide for the prospect of more likely misbehavior later, if I can work up the energy to go out to the pub, if my mates about tonight...

    Mark

  • FormerMember
    FormerMember in reply to FormerMember

    Hi all

    Feeling a bit better today. UGH I was so grumpy yesterday aha.I'm going to pretend I'm 25 until a time of my choosing wherein I decide it is actually my birthday. 

    Nath you're getting old mate ;) I'll be *almost* done chemo by your 26th. I'm going to celebrate my birthday when I can. I don't feel any nodes really now, no, just the odd bit in some areas. But we can't know anything yet!

    Good luck Mark - report back on the radiation therapy. I'll be taking it too before long, it sounds like.

    Jakki - I've bought so many things that I didn't need =/ cancer makes hideous impulse shoppers of us all!!

    Phil - thank you. I really hope that your yuckmouth has receded today. Mine has.

    Watching Star Trek Into Darkness now :D

    T

  • FormerMember
    FormerMember in reply to FormerMember

    I really am so useless at sleeping... that was a pitiful attempt at a  nap, even by my standards... truth be told, its a bit noisey outside, right now, with traffic... and... I oughta take a  1/2 steroid for the Addison's, soon, anyhow, and I could think about getting a shower... which would wake me up... and... damn these steroids make me hungry... dinner soon I guess!

    "cancer makes hideous impulse shoppers of us all"

    Nonsense! I absolutely needed to buy..... these chainmail bracelets cuffs... I wear to chemo... and the silver bell chainmail anklet... and... the vast amount of animal, pillow pet teddy's, that now fill my bedroom... and .. ahh. aand.... the twenty quid a week at lush! oops; guess I'll really notice the differnce in my bank account from not smoking, when the treatment is all finished!; as it is I still seem to be saving more than I was before, despite the impulse purchases, - damn, I probably spent way more than I ever realised on smoking!; thats a definate possitive that's come out of lymphoma....being a non smoker;

    felt so odd; I went to the shop nextdoor, a few nights back (when I bought the bottled Guinness export)'; before I was threw the door, the guy behind the counter, asked me 'twenty or forty' !-

    Without even consciously, thinking, or 'remembering', i just  said " No, I've quite smoking,", and he said 'well done'... - shocked me how quickly 'not smoking' has become the 'norm' I guess... - I seriously doubt I'll ever return to smoking, once this is all over... no way...

    So going to have to go on some kind of fitness thing, though, post chemo/radiation; I can just feel my  muscles are so much weaker than they used to be...

    -Oh, I'll definatly try report back on how the radiation is, in comparason to the ABVD; mind, I'm pretty sure I've missed out on the worse affects of ABVD; just my last, 2b session; the tiredness and emotional swings, that hit me, the few days after, were so much mor ethan before; I'm guessing I'd have gotten that build and build, were I to have gone on, into cycles 3 to 6... - assuming of course, I'll not end up getting those cycles, at some point anyhow... Thursday should clarify everything, one way or another....

    now... what for dinner tonight... pasta... salad... or... quiche salad... or... can i actually be bothered to cook tonight... again (well I did find the energy last night to make veggy, mushroom risotto for fiance and I)... ; somehow just for myself, not sure I can muster entheuiasm for doing overly much...

    Mark/2legs

  • FormerMember
    FormerMember in reply to FormerMember

    Ugh Mark :) you're not alone with the sleep fails. I feel like I want a big long sleep. But I'm a lucky man if I manage to stay in bed past 9am, as well as my now-obligatory 5:30am peepee :)

    Stay off the ciggies. I'm off it - I've gone 75 days alcohol and cigarette free haha.... hopefully I'll be able to be off the latter. 

    I'm being lazy and making pizza tonight!

    T

  • FormerMember
    FormerMember in reply to FormerMember

    the sleep thing, is the worse side  affect, for me, asides the fatigue, in general; they are kinda differnt I think... - now tried all day, with no success to get a nap, or just sleep... - brains too fizzy to turn off completely I think, plus I always think I should be 'doing something'; only, of course, with fatigue; I cna't motivate myself to do anything much, whilst not sleeping!

    Oh, I'm definatly off the cigs, and despite evidence to the contry; I'm relaly not dirnking much anymore... honest... which... yeh kinda implys I used to drink a serious shed full, from time to time anyhow; now I'll more or less settle for a few beers out, and that'll do me, well, Friday night was a bit of a blow out; certainly not had anything like that, until then, since... January, possibly December, actually... - gona have all kinds of fun, with the major 'reinventing' myself, post treatment; I've already started finding it tricky, remembering 'what I used to be'... so... I'm guessing I can sort of shape the future me to whatever seems good an idea... definatly a non-smoker, probably a light rahter than heavy drinker... etc... - almost certainly a lot weirder for it, in a reverse of how all my friend's will expect, for certain... - and seemingly with more chainmail... not sure where that one came from... oh well; it'll most certain be fun, I'm guessing... and full of the unexpected!

    so... so... tired... - unhealthily hot shower I think to wake up, then food... almost certainly soemthing out of the freezer, but with salad to make a wee bit healthy... looking...

    Mark/2legs

  • FormerMember
    FormerMember

    Ok, just done a 2.7km run and I was knackered at the end :-(, hoping that's due to a busy day today and not enough energy left, but fearing the chemo is dragging me down. Will try a morning run on Wednesday to test out the theory. I am not stopping running but am guessing, I am just going to get slower and slower!


    I sleep ok 7-8 hour a night but Hubby and I were chatting about it and he suggested I stay in bed til 8 instead of getting up at 7 with the family, might try that tomorrow, I feel a bit guilty slobbing in bed when they are all getting up for work and school but guess I might have more evening energy if I do.


    Now this is going to sound very old and mumsy boys but here goes; do you have a good bedtime routine? Turn off that screen half an hour before bed, have a hot chocolate or milk and read in bed to wind down. Lol bet neither of you fancy that but go on, humour me and try it once xxx


    sending Magic sleepy dust


    Jakki

  • FormerMember
    FormerMember in reply to FormerMember

    Haha my bedtime routine usually involves just... one... more... turn... so yeah, maybe I should take that into account :)

    My cardio has gone downhill now :( some bike work but mostly I'm just waiting for the end of this before I make myself into the Halfie Adonis I want to be ;:d

    T

  • FormerMember
    FormerMember in reply to FormerMember
    Pretty tired today and keep nodding off to sleep, over the years I've found that you only need a set amount of sleep so the later you get active in the morning the later you go to sleep. When I used to be home on leave from the merchant navy I used to find that I would eventually get to a point where I would sleep to lunchtime but lay awake until around 4 or 5 in the morning, so beware. Had lung function test this afternoon and the oxygen bit is down , which aparently is not surprising being on chemo, so right decision to ditch bleo. Yuck mouth still around but overall I think I'm beginning to notice that the more you get into this the more you react to it, maybe it's just me!! Chin's up everyone, another session soon. Phil
  • FormerMember
    FormerMember in reply to FormerMember

    Phil; my last chemo, err, 2b, or was i t 3A, I  can't honstly remember anymore. definatly hit the most!; tiredness/fatigue, so much more, and the way i kept snapping at my fiance.... so unlike me; my emotions just ... went even more bouncy... and, for the first time, I started knowing what you all ment by the yuk mouth!; I'd not got any of that before, until a week or so after the last chemo, and I'm still getting it now, even though I got a get out of jail free card, for my last chemo, Thursday, and then a second reprease, from the re-alloted chemo day, on Fri....

    jakki!; running? whilst taking aBVD?: you sure your on the same ABVD as me! - I'm getting slaughted, energy wise just walking!

    bedtime routeens? Hmmm.... turn off computer, turn off phone, turn off laptop, put phone and laptop on charge,  put bluetooth keyboard on charge... have some water, and pop a couple senna if I'm so minded!

    and, reading? seriously? I've not had the concentration to read anything of any substance, more than a web page, or tweet, since... January/start of Febuary; another reasons I find my 23 hour long days so long; can't concentrate on anything for more than half an hour; even listening to music is a bit tricky, for anything with substance, or like trying to hear an entire album, most of the time...

    talking of senna... and... 'that'. turns out my theory was correct. The guinness worked even better. and not needed any help in that direction since Friday's night ... drinking bindge, and the ... following morning...! - wonder if I can get Guinness scripted by the oncology consultant...

    actually. given it looks like I've done for ABVD  how long do the aching, joints, muscles, tiredness, etc, and yucky mouth continue after the last infussion?! - still here now; though I think partly I'm getting some taste affects from the .... err... chlorofloxacin (I think it is) antibiotics I'm on, for this little infection I've picked up...

    may actually try reading again, I think my concentration may have improved; although, I may still have after affects, in terms of cognition, memory, concentration etc, from the brain hemorridge I had, end of january (yeh, I relaly must chase that up; neurology just kicked me out, and I've not even got a neurology consultant; wouldn't mind a follow up scan, make sure I'm not developing a nice hematoma to come along and supprise everyone one day soon...).

    well, a bowl of pasta, salad, and a tin of tuna sufficied for dinner tonight, with grated cheese; and enough pasta left for tomorrow night, safely in a container in the fridge...  Wondering also how long I'll need keep the ultra-sterile handwashing all the time, etc up; hopefully they'll still want to monitor my bloods, and I can base it inpart on the WBC and neuts, and when they return to something close to normal, I don't think the radiation should take out my bone marrow, like the chemo does, well, I think not...

    Contemplating a couple* cans guinness, later.... - preferable I think to popping more senna tablets... well, that'll be my exuss... ; well, if the mouth taste/feel returns to normal, before bedtime...

    Mark/2legs

  • Glad all is doing ok, Tom, really sorry to have missed your birthday, but then today is your Un-Birthday (Winnie the Pooh) so have a good one!

    Phil, really glad they dropped the Bleomycin if your lung function is down! 

    Jakki, you are sailing through this incredibly fit-ly if there is such a word, and fully deserve that extra half hour in bed ( besides, the house is nice and quiet when you get up!)

    Mark, hope you are at the end of all this, and that the infection is settling (antibiotics plus drink, not too good a mix!)

    Nath, you really will be looking forward to your birthday, it will be a good one!

    Just popped in with a bit of good news, daughter was seen in ENT this morning and discharged! The Doxycycline had worked fully! 

    Hugs to all on this long long thread xxx

    Moomy