Well, so much for antibiotics!
had a violent reaction to the first lot, vomitting, indigestion, mile-high fever and the shivers. Took me a week to get though that, then began taking new ones. Hospital 3 times in 8 days.
In the meantime, right neck lump still growing, seen by two more different docs, and yet another lump appeared on back of neck, just to left of spine. Had a lot of pain for a week when trying to sleep on that side and laso have pain in left side.
Got a call from the hospital this afternoon to say lump should be biopsied by a dermatologist/soft tissue specialist.
This being England, of course, I should 'have a letter within 2 weeks'--but no guarantees here of course as the country shuts down for 2 weeks over Christmas.
Next bloods and Zometa treatment Jan 2nd, next oncologist appointment Jan 9th---may easily both happen before the 'magic letter' ever arrives!
Just feel down as have pain like I haven't had since April!

Brenda

Bren
Can your GP help sort out the pain.
I know that is not the real issue but one thing at a time.
Can your GP sort things before England stops..
Going to be the harridan from hell to you here..
Have you got a macmillan nurse, don't expect you to need one, but for sorting pain no-one better.
Sh#t to long holidays, they seemed good when I was at work, now 3 weeks to get my results and 2 weeks minimum for you it sucks..
Sunshine.. love and hugs
Helen

Oh yes--I have a MacMillan nurse---guess what, another letter coming in January with appointment to see her!
And yes, I have spoken to the surgery--there's a 'liaison-worker' there for cancer patients who sees that my pain prescription is renewed when I need it.
I guess I try and keep as low a dose as possible, as infrequently as possible til the 'time comes when I shall need..........'

Actually, as I have a pre-paid certificate exemption, 'loading up' would halve the red wine bill!!

Bren....so sorry to hear of your ongoing suffering...Wish you weren't SO far away! Sending positive thoughts your way...hope you can feel the warm hugs....


Lois & Buzz

You've been in the hospital 3 times???????????????

Chill, Suey! Told you Friday night, I'm fine and the lumps will be biopsied soon!
Just had bad reaction to antibiotics and high temp!
Was out shopping yesterday and feel fine today--LOVE Ya!!!!

I am thinking it's much better to be receiving statements from Drs and Hospitals than being put on a shelf for 2 weeks. I wish you all the best and I hope somone in the medical proffession their pulls their head out of their a-- and sees you.

Hi Brenda,

I'm thinking about you and hoping that you are able to get in and get those lumps checked sooner rather than later.

Glad you are feeling better!

Merry Christmas!

Joy

Well,
Got a call from the hospital yesterday, then 2 letters today plus a text message to my mobile phone--I have an appointment with plastic surgeon on Monday morning!
Do you suppose someone bought me 'MAKEOVER' for Christmas????LOL!
Brenda

Congratulations!!

Getting an appointment is a giant step. One of the hardest things we face is uncertainty. May your appointment bring good news.

Best wishes from "across the pond",
Malka

Great!
Love,
D

Just frightened right now.
Will plastic surgeon (why plastic surgeon???) just say no point in biopsying lumps it's obvious what they are?
But on the other hand, haven't really had a 'proper' time span til now--might that come from this consult?
Really do feel rough right now

Brenda

Seems not much about Cancer is ever "obvious", so try not to put the cart before the horse here. At this point, we don't know what they are, and you will deal with it when you have to. Try not to let this disease and the fear that comes with it steal any more time from you. Try to push that aside and concentrate on something pleasurable now. Its really all any of us have!

Donna

Well, back from the hospital.
As the surgeon said, and we all know, the only way to be sure is to biopsy.
He thinks the next step may be some radiation to slow it down again.
So now I wait for the phone-call to go and have the excisional on the most painful lump which is the one on the back of my neck. He thinks that will be the easiest to do..
So once again I wait.........
Brenda

i'll wait with you sweetheart

love liz

None of us are good at waiting
But my twopenneth is that they are moving forward in the right way for you.
Hope it's not to long to wait, they have been good with you so far..
Sunshine.. love and hugs
Helen

So we wait. But we are here waiting with you if that helps! In the meantime, you continue to give so much to this board and others that I know you will put this time to good use.

Donna

OH I will be thinking of you so much. We can all wish for
the new year to be kinder to us. I am so glad that you
could at least see someone and are on your way to getting
some care!! Have a glass or 2 of champagne and we should
all say prayers for each other at midnight!
Debbie

Brenda: I wish you weren't so FAR away....sending warm hugs from the Southeast coast and POSITIVE thoughts your way....

Lois & Buzz

It's now 45 minutes into 2008---so I've passed another milestone!
I get today off, then back to hospital for Zometa and bloods on Wednesday.
HAPPY NEW YEAR EVERYONE!!!!!!!!
Brenda x

Happy New Year Brenda!

We still have 4 hours and 9 minutes to go here on the East Coast.

Happy New Year to you too Bren !! There are still 2 1/2 hours here till 2008 !!
Good to hear you get the day off

And I know as we all do waiting seems to be the hardest part,,,But you do not wait alone...I sit here in wonder with you !!

Shar

Just learned to use the calendar feature--yay!
But it's telling me I've not heard anything from the hospital this week ):
Total number of lumps now 3, the ltest one not too bad, but the other 2 are growing and hurting.
Went to my GP today for sick note for work, told her I was very anxious and frightened etc. as I'm such a wuss about needles even for anaesthetic.
She just smiled and said I'd feel better when it was over--so no anti-anxiety meds for me -- tho she did give me shed-loads of pain-killers and a repeat of anti-depressants.
My MacMillan nurse offered me the Fentanyl patch on Wednesday, but having heard the horror stories, decided to stick with the Solpadol and Ibuprofen.
I also have something called Lansoprazole to protect my stomach from the ibuprofen. When I looked it up on the net and read the leaflet, there's all sorts of stuff about it being also used to treat pancreatic tumours--as I have gastric/chest pain at the moment and a metastasis on adrenal gland, I guess it might do me some good!
Me, I'll try anything once!
Brenda

Hi you

you shouldnt listen to other peoples horror stories!!!Rob didnt have one side effect from fentanyl patches,they were his best friend for weeks,so think about trying them ,they will do a lot less damage to your stomach lining,and if they upset you just stop,and go back to what you were using.
The other drug you mentioned was given to Rob to heal the ulcer voltarol gave him,funnily enough Lynne had to take it recently for gastritis.

keep smiling love liz

Brenda,
The REAL horror story would have been life WITHOUT the Fentanyl patches!!!!

As I have stated before Fentanyl is perfectly safe and efficacious as long as it is used as directed (explicitly). There are always going to be a very few who have an adverse reaction to one drug or another. But if you DO use then do NOT just "stop". They require a careful phaseout with orders from a physician. I and many others I know would have found the pain intolerable without it. It IS the ultimate pain killer.

Brenda i apologise for not being more explicit about just stopping.As some one who has read most of my posts i am sure you know i have always(when asked)emphasised the horrors of unsupervised withdrawal of drugs,i didnt mean my words to be taken literally.SORRY PET

Oi You---chill Liz!
And never do sorry!
How thick do you think I am?????---LOL!
Keep enjoying your hols!! !
Bren x

Bren,
I am thinking of you. I wish you will hear soon.
I know how unsettling the waiting is!
Debbie

I'm still here Deb! And still waiting for the phone call about the biopsy.
Have got into a routine now of taking painkillers so am generally more comfortable except when lying down--my side/chest then bothers me.
If I've still not heard from the Plastic Surgery Dept by next week, will ring as my oncologist is expecting that it'll be done and he'll have the results by 30th!!

Brenda

Got the phone call today--excisional biopsy of back neck lump next week, 16th January, at hospital I hate for a number of reasons (not least of which is my mum died there, utterly neglected for even pain meds or commode, 5 weeks from diagnosis to death and 2 different versions of how the death happened!). Oh, and it currently has 6 wards closed for Novovirus--smashing!
Procedure should tke 30 minutes, to expect to 'be there' 90 minutes, can't drive or use public transport afterwards.
Am just plain terrified--local anaesthetic (during jaw biopsy, it wore off well before finish and had to be re-done, once they'd scraped me off the ceiling!).
Lump has also grown considerably and is more painful since initial referral, so needle for anaesthesia will hurt more, and have back/side pain in chest, so can I stay still for the 30 minutes?????
Told my GP on Friday how anxious I was and she just smiled and said 'you'll be okay'--had been really hoping for anti-anxiety stuff which seems to be 'normal' in US, but sure isn't for my doc!
Should I just 'double the Solpadol' to ease the pain and make me dopey enough to cope???
I just feel such a wuss when I know of the horrendous stuff others have gone through.

Brenda

What you are going through is HIGH ANXIETY type stuff and perhaps you either need to be candid with your general practitioner or you need a different G.P.!!! I would think some anti anxiety meds would benefit you greatly with what you have gone through. Wow. Over here in "the colonies", as well as in the U.S., prescription of anti-anxiety meds is pretty routine with cancer patients. Maybe you need to outright ASK.

Good luck.

Donna

Hi Brenda,
Are you certain they are doing this under a local? When I had my excisional biopsy, I was out cold. Took about 30 minutes and maybe an hour in recovery. True, you are very woozy, so no driving or walking around on your own. You'll go home and sleep it off. Doctor gave me the results in hospital about 2 hours after biopsy. I had no pain with the surgery but everyone and every surgery is different. Hopefully your procedure will be more like mine than your previous experience. Have you asked the doctor what type of anesthesia you are getting and do you have the option of not doing local? The info you have before the surgery, the less worrying you will do.

Take care,
Eileen

Hey Bren.while i am in the air ,you will no doubt be chewing your fingers to the bone!!!I arrive home on the 16th at 6.20 am so if you need someone to talk too my mobile will be on early.

Good luck and hope to see you soon.

love liz

Hi Brenda,

I hope you will be able to have some peaceful time between now and the 16th.

Hugs,

Joy

Hey,
Glad you finally have an answer but I know the waiting is horrible! I think I just stay anxious all the time. I have actually had doctors say that I am just an anxious person. Well, not until you told me I had cancer!! What is with them? I would just flat out ask the guy (what do they think we are drug addicts now)?? It will certainly help ease the anx's. I will
be thinking of you believe me. It will not be as bad as your jawbone, just from the location.
Debbie

Brenda, I wish I could be there to assist you thru this. You are a really good friend and I will be there mentally encouraging you. Just look up and think hard. If you see anything strange,, it's just ole Jim lookin out for ya.

Bren

I think you should tell the Gp that you NEED it , and that it is affecting your daily life, and if she can only give you enough to get through the procedure it would be helpful.

Bren, you and I have talked and you have been there for me ..for the cancer and other things. YOU are one of the STRONGEST people I have NEVER met . ( and even one of the strongest I have )
If anyone can get through this YOU can . Please know that we are all with you in heart and mind !!!

Shar

Brenda - You sure have the right to have something to ease the anxiety. Tell your GP exactly what your experience with that hospital has been and go into detail, yell, scream or cry a lot if that helps get your point across! I don't know about doubling on anything without checking with the doctor to see what the effects are. If you ask her about this maybe she will realize what you are going thru and give you something. I'll be thinking about you and sending positive vibes your way.

Thanks all for your support--I don't feel quite so 'wussy' now!
I think they do 'locals' here whenever possible as it's quicker and cheaper.
I do have a relaxation/visualisation CD which the main cancer hospital gave me and it has helped before--on the visualisation bit I think I'll add an image of Jim the tiger sitting on the end of that 'sunlounger by the pool' ready to bite the head off anyone who hurts me!
Doc's surgery does have a 'cancer liaison' worker who is lovely, so I may just ring her on Monday to twist doc's arm!!
Brenda

That's good to hear, Brenda - maybe you could print out a picture of Tiger Jim to help with the visualization and do get in touch with the liasion lady or anything else that helps. You can do this! Just "be cool".

Oh Brenda! Im so sorry to hear your news! BOOO! But i believe its true that when heres no bone chopping/sawing involved it wont hurt as much.
By the way, what is it with these docs and and the bloody Power Trips they seem to hold over us and our relief???...our ONLY relief for most of us...Drugs!
My God, WE HAVE CANCER FOR HEAVENS SAKE...AND IT HURTS LIKE NOTHING ON EARTH!! I wish I could find at least one Dr who had been through it, then maybe they'd understand.
I cant get enough pain relief and spend most days and nights in tears after only two weeks of Radiation. I am thinking seriously of stopping...could death be worse? Im so sorry for thinking like this but I have already had more than enough and I havent even started, have I?!
As far as my pain goes, I believe this is because for the past 20 years i have been on fairly heavy duty drugs combatting debilitating, herediatary, migraine. I was put into hospital and the result was, I got "cured"...no different to a diabetic is how I look at my treatment. I take tablets everyday to prevent attacks that disable me and prevent mefrom doing what I do.
I have also been on anti anxiety drugs too for the same amount of time. I dont LOOK like a junkie,nor do I act like one! So, as you can imagine giving me an shot of morphine that would put a horse to sleep is like me taking asprin for Cancer pain! To make matters worse my beloved and trusted Family Dr was 'old school' (and he DID cure my thrice-weekly-vomit-girl-from-Hell- migraines!!) But he has now just retired and all the young hot shots cant (wont) believe his treatment worked and are starting me all over again of "have you tried this..how about this?..this?" ho hum! I was on long term methodone...starting a long time ago on a high dose (12 tabs a day) and then reducing the dose myself to 2 tabs a day aby 10% a week! I was so happy!...Then I got diagnosed with Tongue Cancer and I was told not to lower my dose any more. Now...I wish they would think LOGICALLY about this for a second. iM 46 YEARS OLD. Ive done the rock scene, the Bars, the 5-stars and Casinos..In fact, I have been a (never unemployed) professional Musician all of my working career and have managed not only to stay fully employed but have been paid to play and sing all over the world. During this time I have also managed to have tried nothig more than the ole puff of grass! (which tasted like soap and did nothing for me haha)! I havent seen herion, been offered exctasy, not Ice, GBH (or whatever it is) or speed... nor any other of the drugs we all read about. I surely could have got hold of them if I wanted to..BUT I DIDNT WANT TO BE A JUNKIE, I WANTED TO ME A MUSO!! Not only that I DONT EVEN DRINK ALCOHOL...AT ALL! I DONT LIKE IT!
do these geniuses think I WISH to turn into a junkie at the age of 46 WHILE im not working, extremely sick and really in dire need of giving myself and my Husband, more emotinal and physical problems..not just for me but for my family!!!
So, Brenda, when you ask for anti anxiety drugs again...DEMAND THEM! After all as with a Musicians Agent... WE PAY THEM NOT THE OTHER WAY ROUND! GRRR. And you can tell you Doc that the serapax is the ONLY drug that seems to reduce the swelling in my tongue even just enough to eat a bit..it makes sense...the tongue is a muscle...and what do anti anxiety dryugs do? RELAX MUSCLES! Yeesh! Im not usually as grumpy as a sound tonite, Im just in a lot of pain right now. Maybe if i 'accidentally' aquire some kind of medical trauma that they can SEE rather than having to trust my word on my pain level..."So Lyn, whats your pain level out of ten today?" "Its 24...got any ideas?"

By the way my Prayers are with you Brenda, and all and thank you for giving me a place to vent and whine...you are great friends and i am honoured to be allowed to be here to ask your advice and talk to you all. I hope you all get to meet me when (and if) I dont have Cancer..Im really quite a nice person...im even fun to be around! haha Lots of Peace, Prayers and Love from Down Under! Lyn xxx

Wow, - Brenda needs someone like you where she's at to call her doctors and tell them how it REALLY is! Vent all you like, Lyn - maybe it will get around to the pain management people and make an impression. My son sure had a tough time with Rad, but from all I've heard, here there are people who have a relatively easy time of it. I sure hope you are one of those people!

Thanks Lynn--and am SO sorry you're having such a rough time--try and console yourself with the fact that you're doing what they call on here 'baby steps' and just try and get through each day as best you can--and you HAVE been given 'a future'---it will arrive, so don't even dream of stopping the rad at this stage--just turn into a total invalid, don't even attempt to push yourself and 'be brave', just grit your teeth and get thro it.
And keep on and on venting whenever you feel the need--keep looking at Anne Marie's gorgeous hanging kitty!
I guess the reason we're so submissive in the UK is that we have to beg for just about everything on the National Health Service--although we pay our contributions out of every month's salary and maybe never see a doc for years, when we do, it's considered free!
So we have to wait along with everyone else and just do as we're told!
The irony is that my doc actually HAS had breast cancer, but presumably she got through it differently!

Brenda

Lyn,

I hope you can get a handle on the pain but remember the pain only lasts about 7 weeks. I had to take myself off all pain meds towards the end because they all seemed to cause nausea or other side effects with me that were worse to me than the pain without them. I actually did better with the pain and without the nausea so it is doable if you can convince yourself to be mentally prepared for it. What works for some doesn't always work for others but I thought I would just mention my saga hoping it may help if all else fails.

trying again to post.. I wish I could mail Lyn and Brenda some pain meds, but with my luck we would all go to jail for trafficing in drugs. I take them just when the pain says, " hey Jim, it's that time" and if you don't take them I am going to make you miserable. I salute and say yes sir. LOL Lyn as for your venting, you are even humorous venting. I enjoy reading your posts. And Brenda,, I will be your protector at anytime,, me and that tiger .When he growls i'll punch.

Hi all and thanks Jim, I hope I helped Bren with her mean member of "The Keepers of the DRUGS" (ooooH) I realised yesterday that even though I have rather severe versions of ALL of the side effects that Radio causes eg 40698 painful scaly ulcers, agonising swollen and painful mouth and tongue, dry mouth and tongue, dry cracking skin and lips, problems with eating and drinking, problems with mucus and thick saliva, its getting too painful to clean my teeth even with a babies toothbrush, and/or even use mouthwash, TOPPED OFF WITH a chesty phlegmy cough,(Man, I NEVER win jackpots like this EVER!!!) PLUS im only TWO weeks into my six weeks of treatment so far, YET I have only seen my 'real' oncologist twice (rather the one I met on the scary first day who said "Hi Im Micheal and Im your Oncologist"...Maybe hes just hired cause hes got a nice face and makes people feel relaxed and hes not really even a Dr at all hahah....no, he must be as he wrote me a script for something...phew). The rest of the time I have copped young interns...or REALLY young docs...young enough that I could have easily been their Mummys ..and I should smack their bottoms for having no respect for their elders!..er...and then I'd get put in jail and fined for being so unpolitically correct and being the cause of YEARS of their therapy due to child abuse from that one smacked bottom! haha(its stupid these days) Can you imagine a confrontation between me and Brendas Doc? (ouch it hurts to laugh).. hahaha "WHACK..."NOW mister! Is that how I brought you up? NOW! Stop Brendas pain and SHARE your Drugs with her right this minute!"..."NO! On second thoughts, hand em over here, sonny, they are hereby confiscated!!" hahaha.
How many times have I heard "Now, these tablets [asprins with 30mg of codiene in them] are REALLY strong so i hope you arent driving are you? (said in a patronising teachers voice). Then...in a few days, I crawl in on all fours, whimpering that THE MEDS ARENT WORKING..I AM IN AGONY, CANT EAT, SLEEP, TALK AND I AM SERIOUSLY CONSIDERING NOT COMING HERE AGAIN" Her reply might be..."well, perhaps we will try an antidepressant as you seem a bit angry" GRRRRRRR! DAMN RIGHT!
While I am on the ol'e drugs topic, can anyone tell me when the best painkillers are to take for this agonising mouth pain?(narcotics I mean) The last ones i was given were oxycontin 80 mg slow release...they were supposed to work over 10 hours or so but mine only worked for about one hour (so, of course I ran out quick making the dr think i was probably selling them...after all, isnt that what musos do? grrr). Now i have been given mscontin 200 mg (two a day) and they work for about 5 hours. Do I have a really low pain threshold or what? Will they run out of painkillers to give me? Im really scared.
Anyway I hope if not all, then at least a few of you, are feeling better than me today. I promise i wont whine on here everyday, Im just having a really sooky weekend due to the pain im in. Lots of love from D.U (down under) Lyn xxx

Lyn--as long as you can keep that great sense of humour, you won't sink!!!
Hope you can get some answers to the drugs question.
I shall update tomorrow when I've rung the surgery--always supposing I'm not already high as a kite or dopey from drugs!
Bren

I take percocet and a hyrocodone liquid, called lortab, and xanax to ease my mind. They do work for a couple of hours but then right back to the pain. I had a prescription for oxycontin but trashed it for some unknow reason without trying it. I have constant pain in the right side of my throat, neck, right jaw, right ear, eye and head. Maybe it's time we wrote our own scripts and make sure we all get exactly what we need. It would probaly be like giving a young boy a pair of shoes that had never worn them. We would have to show him how to put them on. LOL.. I would settle for something that would stop the pain and burning in my mouth for at least an hour. It feels like there's a centipede in there walking with spikes on all his lil feet. Either a pain killer for him or someone remove his damn shoes!!!! LOL Have a great day all.

Lyn, thanks for making me laugh again. LOL i knew this post had to make my day much better. I love to laugh and you sure can make me. You have the humor we all need.. Have a good day..

Lyn
I can see we will have to get a collection going to fly you out to ever has most need of your services:-)
Brenda am glad you are contacting the surgery tomorrow, I think at least for this coming week you need to move away from OTC pain relief to some prescription only stuff,
Oh and tell them you want some anti-climbing the wall pills, strong ones...
Sunshine.. love and hugs
Helen

Well, bolstered by everyone's encouragement, I went to bed last night determined to do battle this morning!
What I hadn't bargained on was being unable to even lie down in bed beacuse of the pain and in spite of 2 AdvilPM!
So I spent the night on the sofa, alternately playing computer Majhong, dozing, reading a magazine and taking more co-codamol at 5a.m.
Was almost just gonna ring for ambulance and get taken into hospital (my ambititon is to NEVER spend a night in hospital!)
Tiredness and last lot of pain-killers kicken in tho around 5.30 and I lay down and got 4 solid hours sleep!

Whilst debating whether to ring hospital to speak to Julie, my cancer nurse there, or Diane the cancer liaison person at surgery, phone rang and it was Julie to ask how I was doing!
I promptly burst into tears and told her! Upshot was, she's put me in to the 'full MacMillan system' whereby a nurse will visit at home for full pain management. She also said to demand to get to see GP today about anti-anxiety meds, and if I got no joy, to ring her back, she would put pressure on.

Blew my nose several times and calmed sobs, rang Diane at surgery--explained--she said McMillan stuff may not happen immediately as there are only 2 specialised nurses for whole city, but said she would have a word with the new doc who has joined the team. She was trying to be professional but managed to give me the impression that he might be more thorough and sympathetic!

Surprise, surprise! 60 minutes later the DOC rang me--unheard of in my practice, summarised/verified the situation, said he would split the Co-codamol into separate Paracetomol and Codeine, so I can 'mix and match' to include ibuprofen to get maximum benefit for pain, gave me instructions on 'experimenting' and said this is the 'bottom rung' of the pain ladder and to report back to him if I decide to go on the patch/need more relief.
He said any medication should not just be 'taking the edge off', I should have NO pain.
When I gathered my breath and asked about anti-anxiety medication, he said no probs and the new prescription would be ready in 15 minutes---WOW!!!!

So I now have all the ingredients for pain-relief and hopefully, some good sleep to see me through Wednesday (10 whole tablets of 2mg. Diazepam!!!!!)

I'll let you know how it goes!

Brenda

Hi Jim! You made my choke on my coffee this morning...you know I think my Centipede TAPDANCES! NO! There is a troupe of them and they are rehearsing for that musical 'STOMP'...or maybe 'RIVERDANCE!' HAHAHA You really made me giggle with the thought of your little centipede lacing up his golf spikes thinking quietly to himself "man there has to be an easier gig than this?!" hahaha...You should name him!!! Lets see now..."Presenting!! LIVE IN JIMS MOUTH NIGHTLY!! King Kancerpede with his 1000 little tappity shoes PLUS the Kancettes (his little back up centrepededs!) ouch....hurts to laugh...but its GOOD to I think! hahahaha! I hope he has sore feet todayand decides to have the day...no...YEAR off! have a good one everyone Love from D.U Lyn xxxx

Bren
Proud of you lady
This new Doc sounds better, he is quite right the aim is zero pain. Shit to rest of them are they thick or what.
Will I see you floating past on Wednesday?
Take Care
Sunshine.. love and hugs
Helen

Good for you Brenda!! I hope you get some nice rest and relaxing done with your little pills of joy! Its such a pity we are on different time zones as Im usually pacing around looking for relief of some sory in the darkest part of the night. We need CAPES so we could at leat look the part!
Im going in today for another session of "well your pain level really should be under control we just dont understand it" Meanwhile I will try an open my mouth to say something profound like "OW" and I guess I will be sent home with a few more tabs to try. NOT happy. All I need..and Im sure this is how you feel Bren, is just ONE day of being TOTALLY zonked out to the point where people actually THINK Im off my tree...and then to stumble off to bed to Sleeeeeep withOUT pain ...ooooohhhh just ONE night! You know Id pay more for that than a Pink Floyd Concert supported by the three remaining Beatles with John being replaced for the one night by Eric Clapton (you get the drift) hahaha just ONE!

So, keep your [sore] chin up Bren. I believe you will beat this stupid thing and we are here cheering you along...you know my fav quote about "a log goes out trying to stay alight on its own, you need lots of logs to make a great big warm fire"...consider us your logs! Love from D.U. Lyn xxx have a greay day/night all!

Hoping to be 'warm and fuzzy' enough to apy a visit to the island!
No wine bottles to land on my stitches!
Lyn---you just SO have to write a book! Can you incorporate the 'little men with knives which inhabit mine and Donnarose's mom's mouths???
Hey, you're a muso--I feel a best-selling musical coming on---could be SO dark and funny!!!!!!! You and the hubby get cracking--new direction for career!

Brenda

Thanks Bren, I just hope i can bring a few laughs ...even just smiles on the inside of the members of our club in the most horrible pain...a spark of fun and mischeif to an otherwise SHITTY place to be ...not the forum...this is the BEST place to be...I mean where our roads have bought us on this part of our journey....We are all in this together and thats a good feeling....no needs to feel alone. AND there is ONE thing thats for sure...there is ALWAYS ALWAYS someone worse off...that why even though I hurt too, someone hurts more, so its my job to give them a lift if I can. thats all!

I sen peace and love to you all from tha warm and crazy land of 'CRIKEY' (we did love Steve but truly noone ever says that over here! haha) Lyn

I knew when I saw Lyn on that post I was in for a laugh. LOL I sure wasn't disappointed. That lil centipede has compnay today.. They are having a drunken family reunion in my mouth and throwing beer bottles. If they keep it up, the oral surgeon won't have many teeth to pull. I rinsed with insect killer and those little shits drank it. LOL

I knew when I saw Lyn on that post I was in for a laugh. LOL I sure wasn't disappointed. That lil centipede has compnay today.. They are having a drunken family reunion in my mouth and throwing beer bottles. If they keep it up, the oral surgeon won't have many teeth to pull. I rinsed with insect killer and those little shits drank it. LOL

Brenda, the best news today is that you finally got some meds to relieve some of your pain. I agree with Lyn that you will beat this crap and live another 20 or more years. Will keep up the prayers for you .You are one tough lady. So is our comedian Lyn. LOL luv ya both

Brenda,
What a great response from your medical team. I am so happy for you thaqt you have found relief from ther pain and anxiety. At least your sense of humor seems to be working so you can't be too fuzzy from the meds. Rest up and know that we are all praying to hear that you are on the island relaxing and enjoying a beautiful day of blue skies and cool breezes. Just stay in the shade - you know too much sun isn't good for the complexion!!

Malka

Hi Bren
good on you girl,but really co codamol isnt much of a pain killer for your pain levels,and splitting them up to take plain codeine may not be a brilliant idea as codeine causes a multitude of problems on its own ,including constipation,dry mouth and drowsiness.I still beleive you should be going for a long acting patch,which may cause minor problems for the first day or so,but if it works is so worth it.

As for macmillan..you know how great i think they are so ;isten to what they say.


good luck for tomorrow

love liz

It's now 4.40 a.m Liz and am LONGING for a patch!
But how would Ray know if I was 'loopy' from the patch and just normally loopy??????
Get packing!
Bren x

Thank God Bren...I hated to think of you being there without the correct prescriptions when they are so readily available! Take as directed and make sure you are "assertive" about getting renewals when you are getting low. Well Done. Donna

More action today! My son was in his usual slot--'ring mum from car whilst commuting' and we were chatting when call came through on landline--McMillan nurse to ask about pain, what I'm taking, how to take it, maximum dosages etc.
She said I'm really on seriously 'low' stuff and we agreed that after excisional tomorrow, on seriously painful lump, am likely to be in even more pain there when anaesthetic wears off, as well as the 'side pain' which stops me lying down comfortably.
So I'm gonna start from now getting up to today's 'maximum' dose, and take 2 diazepam tonight (that adds uo to a whole 4mg!).
She said sleepiness may be a problem----oh YES, PLEASE!
Want to sleep like a log, if only for one night and drift happily and dozily into the hospital tomorrow (which has just closed 2 more wards because of Norovirus).
Am hoping to be able to 'fly-up' and hitch a ride on Liz's plane whilst they're cutting into me!!!
Brenda

Brenda,, the best of the best to you for tomorrow and may God be guiding the Drs in the right direction to make you beat this garbage. Love and prayers. The old guy.

Hi Brenda, it is about 2.45 at home and I am hoping you are having a well deserved sleep..... I hope all goes well tomorrow and it is pain free for you. My thoughts and prayers are with you.

H Brenda
Hope you had a better night last night?
Send good thoughts to you..
Sunshine.. love and hugs
Helen

Thanks Helen,
No was another lousy night in spite of more medication.
Just had a bath and found yet another swollen node under my arm--is it worth bothering with this biopsy, I ask myself, when it's so obvious what's going on???
Shaking so much can hardly type, but just loaded up 4 mg. diazepam and 2 co-codamol, then will don my MP3 with relaxation and head for the hills!
Brenda

Hi Brenda,
By now, the biopsy should be over. I am hoping they 'knocked you out' with something when they did it. Is it possible the biopsy will relieve some of the pain you are having. Are the new meds helping at all? I hope you can finally get some sleep.

Take care,
Eileen

Well--yup--biopsy is over!
6 needles rammed in for local anaesthetic, really sorry about the nurse's fingers being broken!--LOL!--then I cried and shook--first time in 6 months!
Fortunately didn't feel a thing once I was numb, so now stitched up, very sore now 'local' has worn off--and adhesive dressing has trapped some hair--OUCH!
Biopsy marked 'urgent' so should get--via plastic surgeon-- to Oncologist for my next appt on jan 30th.
Don't think it will make too much difference pain-wise, so many other sites of pain--found 2 new lumps today as well--one more in front neck and large painful one in armpit--don't think there's a node in my body not involved--or won't be in the next few weeks!
MacMillan nurse coming Friday morning to evaluate pain and suggest options/dosing/changing to patch--am in enough of a state to be open to anything!
Thanks everyone for your concern!

Brenda

See Lady of course you could do it..
So now make a list of the questions to ask Friday, I want to hear that you have sorted the pain thing..
Sunshine.. love and hugs
Helen

Brenda, I wish I could do something to comfort you. You have had so many things done to you. I don't know if I would be tough enough for it. You are sure one tough gal. I do have you in my prayers and thought about you all day, even when talking to the Chemo Oncologist. I'm glad my daughter left work fo 2 hrs to hear what he said. Get those toofys out tomorrow at 1 but I will be looking for a post from you and how you feel when I get home.. Use those pain things big time.

Brenda,

Your humor and wisdom seem to be faring well.
I am praying anxiously and waiting to hear that your pain is completly under control.

Malka

Hey Bren,
So glad you have that part behind you now. Anticipation is worse than the actual part sometimes. I will hope that you can get the
pain so you can handle that. I do hope you can find out about the biopsy as soon as possbile. I have been checking every day on you. Please know that we all are thinking of you.
take care
debbie

Oh boy--am I ever a moaner these days!
In spite of discomfort from stitches and all other usual pain sites, got a good few hours sleep.
Then what do I find this morning in the bath???? Oh goody, yet another lump--left breast this time.
So this now brings the total to 7--or 6 if you discount the one removed (at least partially) yesterday!
How many more will appear before I go back on Jan 30th I wonder??
They seem to be 'popping-up' faster than a teenager's acne!!
Will cry on MacMillan nurse tomorrow and beg for something to totally blot out all reality for a while.

Brenda

Hi Brenda,

I'm keeping you close in my thoughts these days. Moan all you want - you certainly have reason!

Hugs,

Joy

Brenda its time to let the Yorkshire defences down and just be a blubbering mess.GET A PATCH get two or three ,get anything you need girl because no one needs to be in this amount of pain.Dont hold back with Macmillan,let them have the real low down with both barrels.
Please Brenda you dont need to keep on doing this tough!!

love liz

Oh boy,
One blubbering helpless mess here right now! Taking advantage of the fact I'm not expecting phone calls and Ray's sleeping peacefully after his night-shift. It's midday, but cold wet and miserable and dark outside, so have shut the curtains and put the light on. It feels like such a relief to just sit and cry!
Denise, McMillan nurse came round and was absolutely lovely.
We did all the 'pain-assessment' stuff/situation so far/treatments/personal/work/social life etc., so all the boxes got filled in.
I told her I'd finally decided to go with the Fentanyl patch--you lot are SUCH bullies! And asked her for more anti-anxiety stuff-she thought that was a totally reasonable request!
She did gently ask me if I knew I was dying---hmmmmmm, having it put into words like that aint too good, told her I was pretty sure that palliative radiation is probably not on the cards now, and she agreed--oh heck--and so we talked about 'end-of-life' issues--I told her, home or Dove House Hospice--anything but hospital! And I'm 'ready to be told days/weeks' on 30th, but of course, aren't really!
My knowledge, prior thinking, discussions with Ray and kids and friends, diary entries--all rational and calmly discussed--but Hell, when it comes to it--whole different ball-game!
She agreed it's gonna be difficult for ME to come to terms with it, then there's the issue of how to tell my beloved children,friends,siblings????--Oh boy, am I ever gonna need those happy pills!
Have done--or tried to do--everything for the last year in a calm, controlled, planned, humorous-but-factual way---have slapped on 'happy face' and 'happy voice', kept everyone up-to-date, done all the practical stuff like wills etc.

But right now--death 'soon' just seems so near--and I'm not sure I'm ready! The irony is, after the last 10 days of bloody awful pain, everywhere, today I'm only on a scale of 3!

PeteyB wrote all kinds of inspirational stuff in the last weeks/months--I feel so dull and uninsightful by comparison.

But hey---maybe the drugs WILL work and I can float and get poetic for a while before I go!

Just a note to all you Caregivers facing this with parents/spouses/friends--we all deal with it differently, this is the first time I've actually felt 'alone to sob and to just feel what I feel' instead of 'pretending' and trying to be all 'positive and fighting'.

Ye gods Liz, what a can of worms you opened for me there!!
Feel better for a cyber-ramble and now eagerly awaiting the phone-call to say I can become an official drug-addict!!
SORRY everyone for that,

A watery-smiley Brenda

Brenda,

Anything you have to say is worthwhile reading to me. Hope you do become a happy smiley person real soon.

Bren,

You were one of the first ones to respond to my post "Good News" regarding Bill's first scans and post treatment assessment. I thought to myself..."How can you even read these positive posts when you have death staring you in the face?" I don't think I could!

So consider yourself relieved of being on the cheering squad and let us just be there for you, good and bad, pain or not, crying, whining, aware of your fate, ignoring your fate...whatever..we will listen and support you.

I think we all feel powerless to know what to say other than, I am here.

Deb

Well,
Just had phone call from Denise--my new GP is much better, she feels, and very 'on the ball'--but does NOT want to go down the 'patch' route for me yet--or give me regular anti-anxiety stuff.
So I can beg for the happy pills if I've a 'potentially stressful' appointment/situation coming up and can have them--well, a few, anyway, lowest dose).
Am being put on Sevredol--gonna look it up in a minute--have to keep notes over weekend, ring surgery on Monday, he'll 'recalculate' how much I've needed and convert it to twice a day MST????
Just gonna look all that up on the net right now!
D'ya think I might get pain patch and tranquilisers on last day of my life???
Oh boy--that great British 'stiff upper lip' stuff--must do it to stop bottom one quivering!!
Bren

If my memory serves me correctly severedol is slow release morphine tablets,although i may be off beam there Bren.

I just re read your previous post and spotted you said you were a 3.The thing is bren YOU REGULATE YOUR PAIN SCALE!!!When they ask you what the pain score is on a 1-10 say its a 9 and see what happens then.You may have a high pain threshold but you are not superhuman,so tell the truth and shame the devil(joke).

You know where i am sweetheart.

love always liz

Okay, Brenda...you've got ME blubbering now....please stop feeling around for more 'lumps'...
Just know that we all love you and wish you weren't ALL THE FREAKIN' WAY across the Atlantic Ocean....

Lois

This is silly...as a family doc, I would gladly give you a patch for your pain and some anti-anxiety meds. You should not have to suffer. Maybe it helps that I had to have an excision myself, and I was happy for my pain meds. I agree that you need to let your doc know that what you have is not enough...don't belittle your pain.

Brenda,

I get so frustrated when I read your posts. Just what about your current situation does your medical team thinks isn't stressful???

I don't understand why they won't provide you with anti anxiety meds and really strong pain meds...like the patch. Is this typical in the UK, or is this specific to your team? Do you have something like ambien to help sleep at night?

Do you have to make a fuss and jump up and down to get what you need? Fortunately, we didn't have the problems you are dealing with in regards to meds. I only had to jump up and down once when they put an IV in wrong and blew through a vein...causing his arm to blow up. But, everything else went pretty smoothly.

It makes me sad that you have any discomfort.

Brenda:

I will keep you in my prayers. Im hope you will be getting the medication to make you feel calmer and less pain.

You are a true inspiration to everyone. What you are going thru and dealing with it with such grace is absolutely amazing.

Brenda

Thanks all--I AM feeling much calmer today!
The sevredol is morphine sulphate, 10mg., every 4 hours.
Waited til the last moment to take the first one last night expecting an instant 'pass-out'--an hour later I was still awake and in pain and took a co-codamol!
Slept then til 5.30a.m., took the next one and did actually go back to sleep fairly quickly until 8.30,got up, then took the next one at 9a.m.
Felt very sleepy and lay down--instant side pain again, so sat up and took an Ibuprofen at 10a.m.
Got onto the net to look it all up--found an excellent Scottish site which gave brilliant explanations of how it all works--apparently it takes up to 22 hours to reach maximum effect, which is then maintained with the 4-hourly doses.
Tablet number 4 at 1p.m. did start to work much more quickly!
Apparently when I report back to the doc, he takes the total 24-hour dosage that's been effective, splits in 2 and I then get 2, slow-release MST per day. I shall make sure I give him the numbers starting from tonight, and include any additional meds I have to take.
The patch seems to be, in some cases, only given if patients can't take oral medication because of swallowing or nausea issues, although Denise the MacMillan nurse says this isn't the case, it's just that I have to go through every step of the 'pain ladder' starting at the bottom when it comes to Stage 3--opiates.
However, as I say--'Always look on the bright side.....' etc and I have become more comfortable and calm as the day has worn on.
I also think it did me good to bawl for most of the day yesterday--got it out of my system!
My sister, who's been a brick, rang and she got upset as she realised that I was, and that things were beginning to look more hopeless.

However, with new descent of calmness late this afternoon, have emailed the twins and told them that any problems they've had/have now/may have in the future can now be blamed on their mother being an official drug addict!!--LOL!

Also, don't have to use 'chemo-brain' anymore as excuse for typos/forgetting things--brain now buggered from hard drugs!
Hope you're all having a good weekend!

Brenda

brain now buggered from hard drugs!
------------------------------------
Last night you had me crying...today I laugh out loud as your post and my recent 'English' lessons immediately brought to mind OUR Southern slang comment...she's f**** up!
Sorry, moderators....I just couldn't help myself!

Lois

Oh Bren, I am so glad the pain is getting less. My kids teased me
about drugs because I had to be very well medicated when I went to radiation with the mask. I could not take it. One morning, after treatment, my husband dropped me off and I told him to please go on back to work, I was fine. 5 hours later, I woke up in the living room chair with my coat still buttoned, my hat still on and the fireplace going. I was sweating. My son got up and dressed for work and kept passing me. THe next day, he commented on my new drug habit. It was amusing in a way, I was scared he was serious, but just pulling my leg. We all just do what we can.
My heart goes out to you. Keep taking notes and keep us laughing with your humor!
Debbie

Debbie,, you sure had a serious time that day LOL.. but I'm glad the drugs helped you and eased the pain like they did.

Brenda has been my hero here since I joined. She is always encouraging others and showing her feelings about what we shoukd be doing to ease our pain and lessen our worries. I have a feeling we cover our , Brenda and I by trying to be helpful and make others get a laugh or a smile.. as for that stiff lip,, take a hammer next time you go and rearrange it into a smile for them. It just might make them start thinking just how bad your pain is. You are my idol Brenda,

I hope you don't get upset when I post the wrong name like i did 2 posts up. LOL Sometime I get kinda DUH like and don't think.. And before you say anything David,, my thinking doesn't violate the child labor law either. LOL

Hi Brenda, happy to hear the pain is under control and I wish you all the best.
Love,
Minnie

Well, it's 72 hours since I started my new 'pain regime'
I seem to have run the whole gamut of emotions since the biopsy last Wednesday, through pain, anger, despair, fright and elation.
Today I feel calmer generally.
Saturday, the morphine kicked in big-style and I felt relaxed and totally pain-free, even the excision site didn't feel so sore.
I slept realy well until about 5a.m., then woke up with searing pain in my side again. It subsided a little when I sat up, as it always does, but certainly needed another pill! And had 2 supplement during the day with Ibuprofen.

Wasn't anything like so comfortable during Sunday, and felt more sleepy. But was also seriously worried about my original lump which continues to grow and hurt.
Looked it up on the net.....hmmmm....certainly, if it isn't yet, it has all the potential to very soon BECOME a gross fungating skin tumour--and you all know what those are like--Yeewwww!
So with that of course came the fears that I won't be able to go away next month etc., etc. and is it leaving it too late to wait til next doc's appointment on 30th? All that kind of negative stuff that slides under your guard occasionally.

But woke up this morning feeling more positive (mainly I suppose because the pain wasn't so bad)so went out and bought a book on Cyprus anyway!

I also spoke to the doc on the phone this morning, I now have the
MST 12-hour release tablets, plus the shorter acting ones which I can take for Breakthrough Pain.
And the 'whole thing' should be in my system within the next 24 hours, so should be functioning better from now on.

Still worried though about 'catching' the top of the neck lump with a brush or comb and opening up some revolting can of worms!

Thank you everyone for your support and suggestions, I really don't know what I would do without you all

Brenda x

Brenda
Thanks for the update..
Am pleased that finally it seems the pain is under some sort of control..
Of course you can go to Cyprus.. its not far and they have Docs. Do they operate like the EU with free emergency health care for us brits?
Hope you have a good night kid..
Sunshine.. love and hugs
Helen

Finally some positive steps in the right direction.

Thanks so much for keeping us up to date. I think of you so much.
You'll make that trip yet!
Debbie

Brenda , that is the best news I've read today. Finally , you can get some much needed sleep and ease the pain before it gets too bad. Pulling for you to make that trip.

Well, the back of neck lump has been excised, stitches out, seems to have healed well and is no onger 'pulling' on all the tissues/nerves etc. around it.
But the original one on the left, which started growing late November, is now the size of a small plum--and beginning to look the same colour!
Some net research tells me it could be 'fungating tumour' which hsn't yet stabroken through the skin to start 'fungating'.
I think both Liz's Robin and Joan's Wally had this condition at the end.
Does anyone know if this is likely to be the case and if so, can anything stop it/slow it to getting to the 'fungating' stage?
I have about 6 others growing, at varying stages and various places but this one is SO visible and just seems to fit the descriptions.

Brenda