Recently diagnosed

phil, at least you are in the right place and hopefully will get sorted quickly

must be something in the water as Iwona has been in hospital too, just been catching up on the lymphoma site, sure she will pop along and update everyone

Hi Everyone! 

Hi all

Scared today. As I've mentioned a few times, I had my nodes in my neck in the past. I was feeling my neck yesterday absent mindedly and its all messed up, but there's one spot in particular where it still feels a node is a tincy bit elevated in the tissue... I just can't tell if I'm worrying myself to death or not :( 

What should I do? Ahh

Yours

Very worried

Hi Tom,

If you are really worried then ask your chemo specialist nurse if you can go in and have them felt, maybe by one of the Lymphoma team. However, be aware that you can get scar tissue, especially if you had quite a largish node there. 

Jakki, so pleased you are improving. 

Iwona, good to hear from you, so sorry you had such a nasty reaction with that painkiller, i too don't do well with any codeine based drugs. 

Phil, really hope you are ok, do let us know when you can.

John, hope that shoulder gives you some pain free sleep and rest.

Everyone else (cos there are so many posting!) Hope you have a good day. 

Me? Off to supervise Bob the Builder! (yup, got a builder in repairing our frost damaged 6 foot wall)

hugs to you all xxx

Tom - Relax. yeh. easy for me to say! - recall those far off dizzy distant days of pre-cancer?: like when I found the massive lump under my armpit; immediate response, because it was pre-cancer days; ahh, its probably nothing; because, in all likelyhood, a lump discovered, is as likely as not nothing! - OK: so we've an increased risk thesedays of post-cancer of it being not*( just nothing... but... =- as moomy  says, best get it checked by someone in the know, to settle your mind, if nothing else... - heck, I keep feeling my neck and noticing some ... possible lumps - I didn't even have lymphoma in my neck to start with! - and, I've no idea what a smallish enlarged lump would feel like, TBH... - the one in  my armpit was... really rather noticible (a good 10 CM diameter lump by the time I was forced to go to the Doctors with it).

Phew. this heat is not serving me well; went up to bed last night at a useual time; circa 2 AM. Loverly dawn chorus started some time about 3.30 I think it was; still swearing and cursing that I wasn't asleep at gone 5 AM. Must have eventually fallen asleep I guess, as I did wake up, some time after 10 AM! - I even used my visualisation to try aid sleep last night, but, to be honest I think it was more a hinderance... - visualising nice happy places I've been, and remember, - just kinda highlighted to m y tired tired brain how I'll never get to see most of them again... damnit! - brains are such stupid things at times... - heat definately difn't help though.

Felt supprisingly OK on getting up though, and getting the first coffee from teh pot down me... - almost too good, nearly forgot to take the hydrocortisone... - feeling more rubbish of course, after having taken it; must go find food soon... =- just took delivery of a purple top hat! - nah, not for me.... - if I get one, I want a leather one, of course!  - this is for the receptionist in hematology/oncology... - she's got purple hair, and is quite as mad as W and I... - yeh, I've a serious purple 'thing' going on in my life the past year... - Karin is truely insane too, and periodically has purple hair, Karin's collar, which I wear, is also purple (suade leather), and because it doesn't take much to develop a theme, I've gone quite purple on the shirt front of late, especially with the silk shirts W bought me... - just need to find an insane pair of purple long leather boots and I'll be truely set for blending nicely into the background whereever I go; already have some nice purple suade leahter, ready to hand, as I need to make a new handle for my white cane; got a new one, but the handle isn't a big enough diameter/circumference to be comfy for my hands to hold...

OK. the hydrocortisone is bleh-ing my brain; this is a good an indication as any that I must go eat something... - a more substantive breakfast/lunch as I'm guessing it'll be even warmer later, tea/dinner time...

Don't think I'll even make half an attempt to do the curtain rail today, if its due to be warmer than yesterday; maybe overdid stuff yesterday, so today I think I'll just play about with this tune I was recording, and get the guitar and bass guitar out, for an airing... - plus sort out some clothes and a bag, ready to pack things in, for going away thursday! - so hoping it won't be overly hot whilst we're away; I can't really resort to drinking beer from dawn to dusk anymore, to cope with hot weather! - post-cancer me, is ment to be  more healthy, if nothing else, and I doubt my body is ready to handle that level of alcohol consumption.... yet....


jakki! huzzah! sounds like your into recovery, despite the chest infection, quicker than I've managed! - my head is still... all kinds of chemo-yuk... - getting the feeling my chemo brain won't be vanishing quickly, mores the pity... - fatigue lifting though I think; and judging by the way I ran down all the staircases to my front door, earlier, my joints/muscles must be easing up somewhat... - From what I've gathered across the internet, trying to  generalise over recovery times, etc., after ABVD, is about as useful as trying to generalise over what side-affects one might encounter, actually during the chemo; no use whatsoever! - two to three months seemed to be a vaguely common theme though, I saw repeated a few times, for sensation of majority of symptoms; with some people saying things like neuropathy and fatigue, were still improving, a year or more post treatment.... - no where near as quik as I'd like; I'm so impatient!

Hope everyone else is doing as well as possible, especially those with infections, or in recovery post-infusions... - chemo brain is my excuss for not recalling everyones names!

tom if you are really worried then you must get it checked for peace of mind, but do remember you are still recovering from rads, plus you say its small and you know nodes go up and come down so on this occasion maybe its nothing as it often turns out to be. sorry about the delay in posting as i have had a couple of calls and see moomy has given advice too.

i am off to see a shoulder specialist this afternoon, so we will see whats next, researching the issue has been fun as it turns out to be a bit like radiotherapy, to have an op or wait and see, as the failure rate is high. given its a grade 5 or 6 then cannot see how it will work without being put back together, we will see. pain free though which is good, different story with the hop along knee.

phil hope you are on the road to recovery

jakki good to read you are feeling chipper today

hope everyone else is as good as you can be going through treatment.

Ah Tom...sorry to hear worries over this....I'm constantly feeling my neck and convincing myself theres something there!

I would have thought way too soon for relapse tho? On reading several blogs/forums it seems loads of people are left with scarring or indeed the enlarged nodes never go back to normal size.....esp with Nodular Sclerosing subtype.....is this what you had? Could also be lymph nodes doing what they're supposed to and fighting off infection?

However. think it best to check with the people in the know....I'm sure they will see you and hopefully put your mind at rest.....

Let us know how you go.....Dxx

Tom, almost certainly nothing but why not get it checked anyway, it'll stop you worrying over it and it can't hurt.

Mark, my energy levels are not what they were but feel so positive today it helps. The last chemo is a big milestone but hard to feel happy when you feel sick, grumpy and have yuck mouth. I keep smiling today, can't stop. Had a sit outside this morning, well covered with cream I hasten to add, it is too warm now so stopping in for a bit. 

Xxxxxxx

Yeah thanks all.. I'm speaking to my lymphoma nurse later on so hopefully she can either get me in to be spoken to/seen or reassure. My heart dropped when I found it, it really did. I have just finished therapy, so maybe it's not even possible that it is something sinister. I had classical HL so yeah nod scler... I hope it's just scar tissue or something. It all scares me so much.

More later

T