Hello...it's me.
If you've been following my posts, you know my predicament with "Hodgkin's." I now am experiencing armpit pain---actually I got out of bed to type this. I thought I was tired...but, started feeling around my surgery incision, and started experiencing quite a bit of 'shooting-type' pains in the armpit.
I realize I had it months ago, but it's much worse. I'm assuming it's connected to the growing node my ENT left behind....there were 2. He only took one for the biopsy. I'm hoping with the start of chemo, it will shrink this one, as I believe it's the "primary" tumor (above the collarbone) & seems to be gaining "speed." Did any of you experience armpit pain? It's making it difficult to sleep. I think I went too long without a Tylenol tonight---over 6 hours and that's a record, since my surgery 2 weeks ago.
I thought I'd start a new thread, as the old one was getting long---
Stay with me, girls.....I need you. This is difficult.
Thanks. S.

Hi Singer

Sorry, don't remember having armpitpain? I'm rubbish aren't I? Have you maybe been having a good old fiddle?

Ails xx

Hi...
I suppose our symptoms were/are different, and maybe my node is pressing on a nerve---that's why the shouder pain, I guess.
I won't be "right" until I start treatment and realize what I'm up against.
This week will bring me more answers. You've told me earlier, every little pain and discomfort will make me panicky. I'm trying to hold it together---quite loosely, for the moment. I'm going back to bed & hopefully, have some nice dreams. That's my 'escape' for now....

Rubbish.....NEVER!

:)

Have a good sleep!

I know that I'm repeating myself but this part REALLY sucks. Once you know what's what you'll sleep like a babby

Ails xx

Ails!!

Have you had a good old fiddle, that sounds really rude!!! (you bad girl lol).

Hi Singer, I am soooo glad that we have started again, thanks hon!!

I suffer with armpit pain, and I did put out a post on it, not much feed-back though, mine feels as if someone is pushing me really hard, really painful, does that sound similar?

Regards to your question, yep I am in limbo :bouncing: around not getting any where, feeling totally helpless. My itching is still there mostly at night on my legs and feet, and I have been getting pain that's increasingly getting worse in my right hip region, and my groin area, what does this mean :confused: I start the bidding at ? If any one can guess correctly I'll give them a big wet kiss!!! Don't you think that's worth it girls?.

I remember now Ails Ross and Rachel singing Emma to sleep, I had forgotten that, my interpretation was much better though I felt!! (lol).

What do your nice dreams involve singer, hunky men?, I could do with some of those dreams!!

We'll stay with you girl, and you with us, as I am sure we all need the shoulder to lean on.

Much love and bestest wishes your friend Susie xx

:bouncing: HAPPY BIRTHDAY AILS :bouncing:

I hope that you have a great Bank holiday Monday off, even if the weather is naff!!

Did your mum have a great night last night? I really miss my mum particularly at the moment.

Have a wonderful time eat, drink and be merry!!!!

With lots of hugs on your birthday Susie xx.

Ps I hope your wish comes true!!

Hellooooo
You people are "losing me" talking about a fiddle?! Here in America, it's mostly used in bluegrass music. I'm assuming you're using it in reference to something else....:confused:

Yes. When these posts get long...time to start "fresh." ---(There's a lesson in there, too.) ;)

My pain was scaring me last night--it was rather sharp & stabbing---but, then again I think I overused it, by switching a whole rack of clothes to another rack ...and that's the most use of my right arm since surgery. I probably overdid it--but, I still think the ole nasty cancer cells :mad: are trying to get me. We'll fix them later!!!!! I'm getting more and more prepared, as I realize IF I don't take action.... well, there's no alternative. :nono: I wish there was!
Susie---Since you are having a multitude of problems, and have had no success with doctors---Here in America, we have "Doctors of Internal Medicine" which seem to put all-the-pieces together. Have you those doctors there, and have you tried specialists? I would just keep seeking. I lucked out with my first attempt at a successful team (I believe, so far)...and I have faith. I didn't even want to seek a second opinion, because I felt comfortable & convinced. I need to start action promptly.
My dreams are usually rather weird....and sometimes premonitions of what's to come. I had the strangest dream EVER right before my sister passed. Now, I know it was a premonition....it all makes sense. I've always been a little on the strange side :dizzy: ---seeing "aura's" and being able to "astral project" when I was small... Don't think I'm nuts---it's true. It's not as strong as it was when I was small...but, I can still see aura's around people--only occasionally...especially if they're spiritual. I SO believe in it all...and throughout life, it's actually been a blessing....somewhat.
Yes, ladies...please stay with me through this journey. I SO appreciate your feedback & can't seem to say it enough!
Thanks!
S.

LOL Smutty Susie!!! :p

Singer - when I asked if you were having a fiddle I meant were you playing with any lumps in you armpits? This could be a reason that they're sore

Right - off for soak in the bath with birthday smellies (before anyone comes up with anything vaguely revolting - new bath bomb fizz - strawberry!!:rolleyes: ;) )

Ails x

Ails---NO>> I swear I don't "fiddle" with them...I do it very gingerly...
I'm just curious what my ole' body is doing from day to day. I know, I know....I'm fibbing a little....

I heard that "mineral baths" are good for your system. Actually, I'm heading out right now to look for some. I good soak is always great! My husband speaks of wanting to go to Alaska (?) or Japan (?)-- not sure. It's somewhere, where they soak in mineral springs, along-side with monkeys!
I swear....Anyway, it's supposed to be healing. I'm not sure if I'd want a monkey in the same 'bath' water as me! LOL! :eek:

Ails---are you having birthday cake?????
:)

I am able to see peoples auras too, only sometimes, and I have a really good six sense, my nan came to me in a dream, more like I was awake and the room went hazy and I sensed it was my dads mum, the night before my mum died, so I knew that her time was up.

I have witnessed strange things, moving as well, lucky me, I have been told by people that I have a gift and I am really interested in this sort of thing, and a bit scared.

I am under a physician, and he is supposed to be fitting all the pieces together for me, and not getting any where :confused:

May be I'll never find out, I just don't want to continue through life like this though.

How are ladies, you both sound great in yourselves.

I lost you on the monkey thing singer!!

Well have a good nights rest and i'll speak to you both tomorrow.

Bye :wave: bye xx

Hey there...
I first started seeing aura's, when I was little in church. The aura's "danced" over the choir, while they were singing. I think that's one reason why I became a singer---music has always been inspirational for me.
I, too, have had many signs of the supernatural....Especially anything that has to do with my mom. I think she's more "in tune" with it, than I am.

What exactly is your diagnosis, so far? Usually, when the doctors here can't seem to put the pieces together, they call it "fibromyalgia." Or "chronic fatigue." Looking back...I thought I had that---I wish I would've been persistant and asked for more detailed tests, but when all my blood work came back o.k., I would just take their word for it ---and continue taking my vitamins and exercise, and just assume I'd be o.k. (sigh)

I bought some Epsom Salts to soak in tonight---Ails is the one that reminded me that a good "soak" does the body good. I think the "monkey springs" are in Japan---it's supposed to be healing---Idunno....I forgot to ask my hubby. He's mentioned before, that he thought that would be a fun vacation.
I have one more day, before doctor's appt's & all that go along with it, starts again. I'm anxious, though, because I actually think my lymphoma will get the better of me, if we don't treat it aggressively---I have too much pain & strange things starting to happen.
I bought some hats today---3 to be exact. I already have some wigs. I'm trying to be "armed" in every way.
Hope everyone's day was good---it was a beautiful day here, weather-wise.
:) XO S.

Hi Girls
Just a quickie as running late for work - couldn't get out of bed this morning - nothing to do with the birthday red wine :dizzy: It's gonna be a long day

Just wanted to say that LYMPHOMA WILL NOT BEAT YOU!! Stop thinking like that or l be taking a trip across the Atlantic and kicking your Butt ;) You are in control, you are in charge of your body and with little help from the docs will kick out the pesky little squatters - you are a strong strong lady

Consider yourself told off, Sweetie!!! You are stronger than you think, I can tell that just by what you've written. I know you're going to have wobbly moments but you'll know what's what soon

Take Care

Ails xx

OK>>> I'm sorry. I just have these 'moments'....and usually, it's when I'm around negative people (which I was yesterday)..
I think I need to keep my 'company' ultra-positive, right? Actually, my aging parents and their frailties, add to my state of mind, too... My mother did not look good yesterday, and my dad seemed to be in state of fog (dementia). It can all be rather hard. I can no longer help them out, like I previously had been doing, due to my current status. My sister is helping them out much more (she lives closer to them) and that's good. ---she tells me to "hand it over to God," when I start feeling that way. Following me through this dilemma thus far, Ails, you know I'm not prone to being negative---I'll try harder! :) I suppose it's still that ole' word---the "unknown" that is messing with my mind.
I actually needed that! Kick me in the proverbial butt again, if you see I'm slipping. :D My husband is a great cheerleader for me--but, he seemed to have a bad day yesterday, too.....very moody.
I will now return back to my bed (for round 2) and dream fabulous dreams !!!

How was the birthday? We have a "blue moon" shortly---I think it's full in a few days. Full moon's always have effects on all of us, you know....

Thanks. I'm better.
S.

"Life is a roller coaster, babe just gotta ride it!!"

Just as the song goes, we have Highs we have lows, and Ails is RIGHT!! you are a strong person, so stop feeling sorry for yourself and start smiling :D OK?

I have had blood tests that take a couple of weeks to come back, some of them were abnormal, and my biopsy's were abnormal.

my doctor and consultant know that I am really ill, they just can't work out what is causing it just yet, my consultant says it's something to do with my immune system not working properly.

I need to loose weight, because if I am really ill, and can't get out of bed, my worse fear is if I keep putting weight on I will have to be air-lifted from my bedroom!!! (lol) It's scary.

I think you need cheering up, so I think a Susie rhyme is in order:

Try to keep smiling when you are blue
or else across the Atlantic Alis will visit you!!
She'll kick your butt, with her foot,
Be scared enough to smile through,
and remember hon we love you!!

Fantastic, I certainly see potential, even if I do say so myself, I am available for weddings, birthdays etc (lol) Ok I know too Much!!

Have a nice Day,

hope you are both smiling xx

LOL! THANK YOU BOTH!
I guess there is a bit of "feeling sorry" in there---
These immune systems are moody little devils, aren't they? They seem to be so complex. My problems were coming for what seems to be years & years---and when I finally realized what it was --good or bad---it was a bit of a relief to know I wasn't a nut "case." Ails is right---once you know what you're "up against," ---then you can hit it head on! I'm still, a bit like you, as I don't know the "whole" picture quite yet. I should know relatively soon now.
I'm assuming the weight problem you're experiencing is due to your med's..am I correct? Or was it Ail's that took Prednisone-based med's? Almost everyone I know that has taken steroids, sooner or later gain weight. Can you exercise at all? ---as in light walks, low-impact anything? I know you have children, so that in itself has you running, I'm sure.

LOVE the rhymes! We used to say in our family, "You're a poet, And didn't know it!" :cool:

I will take both of your advice & try to lighten up.
Like I said, yesterday was a rough day with my parents & their outlook on me. My mom cried a bit---she's from the old school of "cancer"---I'm trying to change her beliefs---she HERSELF has beaten it (different type, though). I'm trying to enlighten her about this disease and it's cure-rate. I think that had a lot to do with my moodiness.

BUT AILS AND SUSIE TO THE RESCUE! What would I do without you 2?
:confused: :confused:

Love you both for being concerned,
S. XO

fairy-lights,
May I ask, (I reread your post) ...
What kind of biopsy came back abnormal?
I hope you get some answers soon. You're in my prayers...:angel:
S.

:wave: I'm glad that you laugh, it helps!!

I think it is harder for loved ones to stand around and feel helpless, as they can't make things better, I'm sorry that it's so upsetting for you and your mum, as you get upset seeing her upset, and it goes on!!

I had two lymph nodes removed from the left side of my neck. They came back showing something like "reactive sinus hypensitosis" can't spell last word off hand. my ENT had never heard of it, and I still have not been told what the full meaning means.

I am sure that it is nothing to worry about, I just wish i had lots of energy.

I try to walk, somedays I don't even have the energy to get out of bed, that's how pathetic I have become, I try my best for the children and my husband though. xx

I put weight on because i had a health problem that caused weight gain, and now it is down to meds, picky eating, not eating enough etc.

Ails how's your head feeling today hon? My husband loves red wine, I can't drink the stuff at the moment, it seems to make me ache, or the pain feels worse?

What did you get, anything fantastic, or just the norm?

Bye girls speak to u later xx

Good Morning (here it's 10:30 a.m.)
Yes. Watching loved one's fall apart, when they hear what you have to go through, is not fun. My poor mom said she'd "rather go through it for me..." --at her age! I wish I could lessen her helplessness some...but, in reality, the worrying about them the past 2 or 3 years, has probably added to the stress that broke down my immune system. I don't know...but, I do think I had an overload of stress the last few years. My doctor said it certainly didn't "cause" it...but, it certainly didn't "help."
I've never heard of your diagnosis, either. There's so many odd, mutated things lately that even baffle doctors. But, technology is amazing, and they're learning so much the last decades. Just think of what's to come---I hope they find a cure for cancer soon!!!!!
Do you take a multi and extra supplements? Even my Oncologist said "green tea" is good for it's antioxidants. Also....red wine....(which you said you don't seem to be able to handle right now...maybe you will eventually.) I haven't had any "spirits" for a couple of months....I'm trying to flush any toxins from my body. I don't know if I can have red wine during chemo, or not--I'm writing a list of questions for my Oncologist. From what I understand, it plays havoc with your taste buds.
On with my day---my coffee is waiting.
:) S.

Singer, are you into Wednesday now? I am still on Tuesday (sounds stupid)

I am just trying to work out the time difference?

I hope that you have a lovely day today, mine was hectic, in a short while I will be sending my little ones all to bed!!

It's not just red wine I can't tolerate it's all alcohol, it doesn't matter, since having the children I don't really drink a lot anyway.

I can't stand green tea (yuck!!:rolleyes: )

Take it easy today, and remember just to enjoy things and relax.

Lots of love Susie xx

Ps Hi Ails, I hope that you have had a good day at work, and your hangover has worn off, if you had one that is!!

Have a good evening all of you bye:wave:

Hi Susie,
It is 1:45 p.m. as I type---
I think my husband told me, that England is 5 hours ahead.
I know....it's a strange thing.

I'm trying like crazy to get some things done. I was up in the attic, trying to sort things out---but, my body "told" me to quit, after about an hour. It's full of dust---I don't need anything else (symptomatic-wise) on top of what I've already got. I've got, probably 10 years of accumulation up there---I was "always" going to clean it out....now, I have the "time," but I don't have quite the "stamina." It's a trade-off, isn't it?
Have you tried green tea with honey? It's a little yummier that way.
I'm off...need to get some things accomplished---mind over matter.
I'll check with you ladies later...
:) S.

Hi Girlies

Hope you're well. Just checking in to say "Hi" Right, where's the alka selzer? :cool:

Ails xx

Ails,

Drink lots and lots of water. You need to rehydrate!

HAPPY B-DAY !!!! :jester:

Deb

Hi Deb

Thanks for that - just joking - only had a couple of glasses!

Ails xx

Hi ladies.
I was just wondering, looking at how many posts you ladies have...
Do we get a big prize if we hit "1000" posts?? Just thinkin' out loud. :rolleyes:

I'm so happy you wonderful "gals" are responding to me. You must all be good typists. I actually "broke" my high school record (that was years ago of course)...at 105 words per minute. I actually got a plaque!!! My sister (who lives out of state) gets very perturbed every time she sees me type...she's a "one finger" typist....yet, she's much better at lots of other things than me. We all have our strengths and weaknesses, no?
...Just got back from getting my hair cut short, in case it all falls out. I have a short "bob." He told me he's had lots of chemo patients, and to wear my hats & wigs with CONVICTION, if necessary!!! He was good for me to talk to. I haven't had my hair this short, since I was a wee little one. I like earrings, though---so, maybe now they'll be seen.
As bad as my day was yesterday--it's almost that "good" today, thanks to all of you kicking my butt. Woa, is me.....

I see my "port" doctor tomorrow. Should I ask him anything special for those of you that have "been there?"

Thanks..
:) :) :) S.

Can't think of anything in particular apart from general does and don'ts. Try to get some guaze tape from him as taping the sod out of the way definately helps (or if you have big boobies like me you can just tuck it down your bra) !! I don't mean to laugh but when I first had it done I remember looking in the mirror and thinking that I resembled the illegitimate child of a human and a drip stand?? Yup - I have a VERY warped sense of humour!!

Glad you had a good chat with your hairdresser - it definately helps. There's a telecom ad over here and the catchphrase is "it's good to talk" so true!! He's right about the hats and wigs - experiment - it is so much fun

We are 5 hours ahead if memory serves - at least our cleveland office is!! You are in Ohio, right?

Ails xx

Hellooo
My husband says he remembers them saying I "might" get my first chemo treatment, when they put in the port. I suppose I'll find out tomorrow.
Did that happen to you? --having your chemo on the day of port surgery??
I haven't been able to wear a bra since my surgery---my incision is right exactly where your strap goes---about three inches wide & still sensitive. So, I've been wearing camisoles (sp?) and doubling up on tee shirts... Since I'm small, it doesn't matter. The seatbelt in the car even hurts.
Do you remember how long your port was left in? I think I leave mine in, through next year---just in case. I may be misinformed.
I just read someone's post---about their friend dying of Hodgkin's when they were only 23.....of course, now that's sticking BIG time in my head. I have to think rationally, and keep thinking about that 85 percental rate of being cured! I also am freaking out about another post I read... & what our insurance company "will" pay and "not" pay....I wasn't aware that insurance companies balk at PET scans. Oh my goodness....it's all so overwhelming.....
Yes...I'm in Ohio... May I ask what line of work you do, that you have a Cleveland office? I don't know if we're "allowed" to ask these things...as, I hear about "lurkers." ---It will get bleeped, if not allowed, no doubt.
:) S.

Hiya Hun

I didn't have a port from the start and would have had chemo straight away once fitted but I was on my week off (timed to co-incide with my hen party trip to Prague, Czech Republic - whole other story as I was still partaking in a little alcohol but was the only one who remembered the weekend therefore I have the power!!! LOL). I had it for approx 4 months but got an infection and it had to be removed - moral of the story? Don't "fiddle" with the port! :rolleyes: Can't help on insurance as we have the NHS(national health service) which is paid through taxes

Don't freak out - I didn't say no-one has ever died whilst having hodgkins. Please calm down and think logically - I know it is soooo tough at the moment, Babes, but please try. No-one has ever died crossing the road? No-one has ever died in an RTA? No-one has ever died having liposuction? Do you see where I'm going with this?

I work in the airfreight industry and we have offices all over the world

Ails xx

Ails,
I actually read your email to my husband, who realized I needed to hear what you posted. I see exactly "where you were going"....and I don't know what I'd do without you. This is better than any psychologist---and then--on top of it all ...I'd be paying !!!!!!!!!!!!! :eek:

Airfreight?---My husband was just talking about a "2nd" job and thinking of "expediting" with his truck for extra $$$$. We're still settling in to our new lifestyle of "getting well." He's in this with me....Thank God for him. He's been having a rough time, too....but, he's my tower of strength right now...of course, my faith, too....

:) thanx a million times xxxxxxxxxxx

Ails....Forgot to mention...
My sister was with the Peace Corps in Prague for a couple of years---
She loved it there....really didn't want to come home..
Fell in love with a professor....said she drank a LOT of vodka...everyone apparently did....
She's an English teacher now, on the other side of the States...
I miss her.
S.