Recently diagnosed

Ha ugh such a terrible night! The dacarbazine really, really tastes AWFUL to me.

I made a bacon and cheese sandwich at lunch to make myself feel better :) sunshine again here in Londres. 

Hope you're all good!

Phil, given you have got this far with out any serious sickness issues it would be unusual for them to kick in now, though as we all know anything is possible as we all react differently, I think it was the sausage saying it did not want the bacon. Hope the aprepitant sorted it for you.

after t shirts last week, we have snow forecast for tomorrow and its been chilly today upnorth 

john

There is a bit of a bacon theme going on here, is this a chemo thing? Perhaps I should get some in!

Just posting here to teenager-avoid, love my boys loads but homework is a nightmare in our house. My eldest hates us both, I asked him what he hated about us in particular apparently it's every time we speak to him, was hoping for more to go on than that lol.

Had a good weekend, bought two summer hats today to cover my baldy head, also had to buy a dress to go with them obviously-would be rude not to! Nath, I think the spending is rubbing off. My neuts were 4.7 so have eaten out a couple of times.

My bones still hurt from the GCSFs but did the last of 5 today so should be better by tomorrow evening.

Hope you are all recovering a little after chemo and beginning to enjoy food a little more.

Tom, is it this week coming you get your scan results?

Moomy, hope the ENT appointment goes well for your daughter on Tuesday.

Love to all

Jakki xx

Hello all.

Today I am 26. Today, sadly, I have also decided to postpone my birthday until summer. I'm so, so lethargic: the most tired I have felt on a Sunday after treatment (historically, always the day I am knackered but today I've just felt grumpy and tired all day!). I really tried to be energetic and birthday-y but it's just not happening. Yuckmouth also visited me in a bad way. Ugh.

Anyway, despite feeling a bit sad about it all, all in all I'm actually quite glad. I'm quite glad that this has been the only time this has happened so far; I'm so pleased that this has gotten to 75% of the way through without me feeling like this. I only, I hope, have 2 left (yes Jakki I'm hearing from the consultant next week - the 22nd), and the last one will be totally diluted by victory. So there's not far to go. Not far to go.

So... birthday postponed. But I'm strangely thankful for it.

I hope everyone had a nice weekend

Tom

Ah Tom, what a shame your birthday fell on chemo Sunday, good idea to postpone, make sure you do arrange a date and do it properly as you would usually do on your birthday. Let me know when your new birthday is so I can wish you a happy birthday. Xxxx

Hi Tom, you still deserve a Happy Birthday :-)  I'm not too bad at the moment, a bit tired and a bit of a yuck mouth.  Spent the weekend watching son playing in a couple of warm up cricket matches, Saturday wasn't too bad, sunny but cold wind but Sunday was horrible, overcast cold and very windy and the we had some sleet & hail to go with it.  Anyway I was a good boy and stayed in the clubhouse and thus hopefully avoiding any infection, watching any food I ate.  Hope everyone else had a good weekend.  Phil

Tom -

“Mark... Does this mean you're clear!?! Amazing if so.. Never heard of them putting off a chemo, I'd expect them to finish it eventually. Is the next step

to go in to see your consultant and find out they're going to adjust your plan? Either way, I'm pleased for you, I hope you enjoyed your celebratory tipple!”

yep!; that is what it sounded like to me!; but nurse obviously didn’t want to say as much, in so many words, until everything is official like, from the consultant;

my consultant (the top bloke), plus another ‘lymphoma expert’, and radiologist are meeting on Wednesday; I’m in on Thursday morning to meet with…. Err, a consultant I guess; can’t recall who the nurse said now.- assume they’ll like to do bloods again whilst I’m there, keep an eye on my biochemistry etc.

Leslie   

 - 

 Oo, thanks for that link; no I’d not seen tht, am sharing it with my fiancé too… - haven’t quite got brain capacity to read it properly, myself, right now!

I too was diagnosesd with 2b; one large palpable node unde my arm pit (how I presented to GP), plus five tiny nodes under my collar bone, same side). – likewise I got bad neuropathy from vinblastine; they stopped that for me, after 2A; I don’t seem to have any problems, touch wood, with bleosin (sp?); I told nurse in no uncertain terms, - I don’t think ABVD is something I’d recommend to a friend as a plesent pastime; but I am mor than willing to continue treatment, on it; but, she said I’ve just got to wait, until I see consultant Thursday, so hence didn’t have 3A, this Friday…

Phil; my enlarged lymph node; under my armpit, was big enough to stop my arm, going close up to my side; it had vanished to a pea sized lump, after the first infusion (1a), by the time I went to see consultant  immediately prior to 1B; I told him I could still palpate a small bit of it; he had a feel; and told me, nope, that wasn’t lymph node, or lymphoma I was feeling; I had a re-feel; he made me tense my pectoral; pop!; tendon slid out of the way; which was what I had felt, and assumed a tiny bit still left of the lymphoma… so basically that massive one I had, seemed to vanish after my first infusion!; I must have taken a bash from my first 1a; my neuts were down at 0.25, just before my 1B; they must consider me younger than my actual age; as they still went ahead!; neuts now at 3.4, were 1.6 back on 26 march…

Jakki- thanks! – and I’ve still got hair!; and still have a tiny tiny pony tail!; now adoring my pony tail, as there is sto little; large purple and large pink ribbon, tied as bows! Seriously!; I turn up each time, at the chemo ward, looking just a bit…. More weirder…. – Just to entertain the nurses… honest… - I set about half a dozen off in a fit of giggles, this week, with … a particularly…. Well-placed remark regarding the size of a tablet, and my not having any trubbles putting large things in my mouth….

What constitutes ‘good’ for neuts?: mine at 3.4 now, up from 1.6 end of March, so I assume my counts are decent enough for me to eat out, cautiously?

Happy Birthday Tom! – just save it all …. For a massive blow out party when the chemo et al is all over!

Well.

-         my good news! Hurrah; no chemo!; then the universe conspires, to balance out my carma!

Woke, Friday, (the day I should have had my chemo), feeling…. Worse than useual….

Checked; running a temp….

Checked in with my Fiance. Who… told me in no uncertain terms not to ignore it… (my kinda default first rsponse, to be honest).

Phoned hospital/chemo ward. Answered some questions…

Fiance got to mine as quick as he could; I packed a bag, expecting a stay over, and I.V. antibiotics.

Got bus to hospital… shown to bed…. Threw a line into my  port (by a big rugby playing nurse, who for once, really knew how to get a line into a port!).

Bloods… observations, BP, temp, etc., etc.,

Yeh… running a temp (lowered by the time I’d got in though), and had a small infection; my slowllen right eye; I’d put down to inflammation due to eyelashes dropping in, possibly the cause; my bloods were pretty decent though; so no need to stay in, for I.V. antibioitics; the doctor scripted me antibiotic tablets and eyedrops…

Had to wait ages, Fiance went to get drugs, but they were busy at pharmacy; eventually got them; then, suddenly, name of the antibiotic triggered a memory…. – double checked with nurse; yep,  penacilum based; I’m allergic…

Eventually got a different one scripted, and finaly made it home around 7 PM.

Oh.

This is more ill feeling than the chemo! Haa! – knew the good luck news, of   probable end of chemo, was way too good!

Mind, not being helped by other things; spent 10 hours in bed last night; was so tired… and I slept exactly zero of  those hours… - brain is barely functioning today…

Mind, I might not have helped matters… I … got a little bit drunk Friday night… well. OK.. a lot drunk; managed to source some bottled Guinness export, from shop nextdoor; that’s the 7.something percent version; MMM! Four of those, plus a few regular cans of Guinness, plus the  antibiotics, and going to bed at 4 AM, probably hasen’t helped me much TBH!

Just hopeing, as antibiotics finish Tuesday, that I might be feeling OK, come Friday/Saturday; esp after seeing consultant Thursday; if I am moving onto radiation, possibly quite soon; I figure, with last chemo then being three weeks plus behind me, that I might try wisk myfiance away, for  the weekend, whilst we have the chance ; no where wildly distant, as I don’t think I’ll enjoy the  travelling bit much; but, just for a ‘break’, for him, as much as me… try take ourselves away from ‘cancer’, for just a few days, before the radiation, or whatever it ends up being, gets going!

Well… that’s something close to a plan, so I expect it’ll all be ruined by something!

Hope everyone else, who got their chemo, is settling a bit now, after the weekend fun… - I think I’m getting a bit of dacarbazine ‘mouth’, mixed with something similar, coming through from the antibiotics! Jjust for fun, mind… - I think my night out with a mate this week, might hav to be postponed too… just so tired now… May even give in, and try nap this afternoon, to catch up a bit on missed sleep from last week; I don’t want another 80 plus hours non-sleep on top of everything else, from experience earlier on during chemo, things get uncomfortable if I go more than 80 hours without sleep….

Happy Birthday Tom - try and enjoy it a little bit :)

It's my 26th on the 3rd May - I won't have had my end scan by then so either way I'm just going to enjoy no treatment and have a good birthday. I've bloody earned it and so have you!

I can STILL feel little nodes in my neck. But they've all shrunk so that's something I guess. Not getting my hopes up :)

Most annoying thing is this pain in my leg. Seeing my consultant on Wednesday, looking forward to it weirdly.

Mark, a bit of a roller coaster week for you! Perhaps if you do lose your pony tail you could have one of those headbands with the flower on, you know the ones they put on bald babies? Neuts, think it's 1-8 for normal range, they have done chemo with mine at 0.27 and seem to suggest they pretty much crack on with ABVD if you are young (they also class me as young at 41!). I love that you got drunk, I really can't imagine doing that at the minute, will def have a bender when I finish chemo. My consultant said fine to go away beginning August so if mid point scan results look good we will book, hoping for a villa in Corsica-I have my eye on one which is still free at minute, keep your fingers crossed. You should def try to get away this weekend, would do you the world of good. Even having just one night away made me feel much better mentally.

Nath, your birthday falls a couple of weeks after your last chemo doesn't it? If so you should be feeling up to a good few bevvies hopefully. I have thought more about the cancer since I had my scan date (mid point scan), do you find yourself worrying more as your final treatment comes closer or not? Just wondered if it was normal.

Phil, ooh cricket season nearly here, how is your lad shaping up? My boys are on their break from Hockey for a few weeks, pre season training usually starts in June. Hope you start to feel more energetic and less yuck mouth soon.

I have just been shopping for more PICC line hiding shirts, accidentally bought two pairs of Sketchers too oops, your fault Nath, you started the spending thing

love to all

Jakki xxxxx