Starting Chemo in December.2012

[Cybele]

Sounds like very good news, Wendy - bIG HUG xxxx
What's all this about a wedding? Have I missed something?
lolly - the mothwash had me in fits!
Cress - yeah, I gather Clarissa was ALL of those things and more in her hey day - and presumably also had the wonderful attitude and hilarious style of discourse which is why I imagine you as her, if you see what I mean. I'd love to see you pulverising an unruly oncologist...
I am feeling MASSIVELY more cheerful - I think it was PMT that floored me this week, a truly awful mix with chemo side effects.
The fact that I'm still getting PMT at my age is startling - I was so proud of not having had the menopause yet (Oh, I'm still just FULL of oestrogen) until it dawned on me, post dx and a little research, that all the s***ing oestrogen was probably a significant contributory factor to my getting breast cancer. Doh.

[Cressida]

Good news Wendy - now you will be able to plan surgery/wedding! x

[QueenDrama]

wendy - that sounds fab!!! x

[Wendy56]

Stop the bus I want to get off - or is the roller coaster !

Onc appointment today ready for 2nd tax on Monday yippee oh what joy. Only got to have 4 and will scan me after 3 to see about shrinkage but she thinks the lump is less than 4cm - 4.8 cm at start so hopefully that is good. She is going to refer me back breast surgeon in next 2-3 weeks to discuss mastectomy and immediate reconstruction after chemo so all in all happy bunny today just that sometimes things move so fast yet other times it drags.

Hope everybody is having a good day.

Wendy x x

[lolly123]

hi Cressida,
That made me laugh out loud, i even read it back before i posted it, funny how that sounds mothwash.

[Cressida]

Lolly - "mothwash" is a good description of trying to get rid of the furry stuff growing in mouth

[lolly123]

hi to one and all,
Just got back from my onc appointment, she is going to give me more anti sicknss tabs to try and stop the queasyness i have for the first 5 days also some med for the intergestion and mothwash for my mouth, as ifeels strange, and more injestion after Chemo to keep my white cells up, apart from that I will have my bloods done on Monday for my 2nd FEC on Tuesday, all going well.
Hope you are all coping well as you can, hope the snow doen,t stop anyone doing things thay have planned for the weekend
love lolly
x

[Cressida]

Morning Girls, got up early to take steriods and marmite (not that I was sleeping) but forgot and sat here watchng squirrel eat birdfood and next door's cat chase birds, whilst drinking tea. Chemo Brian. Should point out that I was drinking tea; not cat, birds or squirrel. Lost an hour and a half somewhere. Lost some of it on this website. Did I have something else important to do? Or anything at all? Apart fom take meds....

Alpal - you can practice your skiing today and see if Tatum stays on. I doubt that any chaps watching will be sexy or even ski instructors. They might laugh tho.

Lisalou - Hope you are feeling better. I am having my first booster jab today, so will be able to report next week whether it has raised my neut count in between chemo.

MZ/Karen - weekly Taxol? I felt sorry for myself having 2 every 3 weeks. You win.

Caroline - forgot you defected to JJ's. Hope you feel better.

Cybele - I will have to look up CDW when she was 23. I seem to remember she was sexy, thin, popular and rich. Will check, but it had better be true. Hope you make it to Yorks and I hope every rat in the area has not taken refuge in the loft.

Good luck to everyone being piosoned or coping with sfx. Keep on keeping on, xxx

[Cybele]

'A Public Apology To My Hair' :

today's post on http://chemonights.blogspot.co.uk/

[Cybele]

Karen - blimey - 5 chemo sessions in 5 weeks sounds tough. How is your hair holding up with the cold cap?

[Guest user]

Just sitting here in the cooling cap. Weekly taxol number 5 nearly done.
2nd time here. First BC and chemo wasin 2009.
Karen

[Caroline60]

Hi all, sorry I didnt get back. I was hospitalised for 2 days in the end. Im just out. I was kept in an extra day as I was having a echo - have opted into Persephone Trial and echo is part of the treatment.

I will be having Emend next FEC - yippee. Im also havinh a portacath put in as having herceptin.

Marie the beetroot juice is vile - but im a vege and need to rethink my diet. IE more greens reds and yellows in my diet. I do eat a lot of beetroot but dont feel like eating lots of food at the moment.

Anyways, I am feeling better and have booked myself into some complimentary therapies next week.

Onwards and upwards.

Thanks again ladies

Caroline - PS back to the January Jems.

[Jayne_m]

QueenDrama - your daughter sounds like mine, nail art v homework, no surprise for guessing which wins far too often! Not good when studying for GCSEs!

[QueenDrama]

Jayne - i agree your nails nare fab!!!! i might get my daughter to do the same to mine - Depends on how much homework she has!

Cress - love the pic and sooo glad that marmite isnt a cancer cure cos i blumin loathe it! I have frozen some lemons and grate them over every meal. I read somewhere that lemons are anti carginogenic. Ive no idea if thats true but my meals taste better. well actually my meals taste of somerthing!!!!
Lias - the thrush sounds yukky hope you get it sorted.
Its snowing in earnest here. I blame my daughter who was snowdancing last night cos she wants a day off. The company would be nice but shes doing GCSE's this year so really should be at school!
Love to all x

[QueenDrama]

Jayne - i agree your nails nare fab!!!! i might get my daughter to do the same to mine - Depends on how much homework she has!

Cress - love the pic and sooo glad that marmite isnt a cancer cure cos i blumin loathe it! I have frozen some lemons and grate them over every meal. I read somewhere that lemons are anti carginogenic. Ive no idea if thats true but my meals taste better. well actually my meals taste of somerthing!!!!
Lias - the thrush sounds yukky hope you get it sorted.
Its snowing in earnest here. I blame my daughter who was snowdancing last night cos she wants a day off. The company would be nice but shes doing GCSE's this year so really should be at school!
Love to all x

[Jayne_m]

Cybele - my 14 year old daughter painted them for me as an end of chemo celebration!

Jx

[Cybele]

Lisalouw - I just laughed and laughed and laughed after reading the sentence 'I was at the chemo unit trying ferret on' - it made my day. Hope you're feeling better now xxx
Maire - have only just seen what you wrote about the poor baby squirrels - did your friend take them to their mum?
Cress - love your new avatar. Although in my mind you are actually Clarissa Dickson-Wright, for some reason.. (when she was 23, obvs)
AlPal - I read up on Hodgkin's disease and breast cancer yesterday, and was outraged on your behalf.
Jayne - have been meaning to say - those nails are FABULOUS.

[Lisalouw]

Hello ladies, I'm finally feeling slightly better after my neutrophils dropped to 0.1, I didn't know this I just felt rammy and had chest pains , I was at the chemo unit trying ferret on and I mentioned it so it was lucky that the oncologist was there , I'm in Yorkshire too, Barnsley , I had an ECG which was normal , the chest pains were coming from thrush in my throat spreading all over , I had my bloods done there , so I've had a week of very strong antibiotics and keep a close eye on my temp , I'm now at my gps tom as my sinuses have started to burn but I think this is the very cold weather as I had it before all this , and very strange a stitch from my surgery has come to the surface which was supposed to be dissolvable checked , I'm hoping my bloods have come back up now I'm on day 15 and I'm going to ask for injections to boost my immunity for next session next thurs as I really don't want to go through all that again, it's made me a paranoid wreck who no longer has rational thoughts ahhhh! I hope your all well and Im going to read back your posts later when my son tucked up to catch up to see what you been upto , lv to you all xxxxx

[Cybele]

Thank you Jayne, that is much appreciated. And very wise words. xxx

[Jayne_m]

Caroline, you are nearly half way through - here is a couple of thoughts for you:

'Be mindful of how you approach time. Watching the clock is not the same as watching the sun rise. Keep your face to the sunshine, leave the shadows behind you.''

I hope you dont mind me sharing these thoughts but you sound understandably fed up today. I have got so much enjoyment from your blog, that I wanted to offer something back x

[Cressida]

QueenDrama - you have finally persuaded me to put a profile pic on. Was going to put a pic of some cress. But Marmite tastes better. It does not cure cancer but I can taste it. Wig woman deserves slap.

Cybele - get yourself to Yorkshire before it snows. They have proper snow there. Don't know what rats think of it....

[Jayne_m]

posted twice sorry

[Cybele]

Do you know what? I can't wait for my next dose of steroids - it's a pity they have t ocome with the poison, but they really do give you a boost...
Mandy, am really hoping that you are demanding a PICC line RIGHT NOW. Re BUPA, I'm sure I've read elsewhere on here about someone having difficult getting a pICC line fitted because BUPA didn't want to pay for it..because it costs about 800 quid.
I have been at my lowest for the last couple of days - a third of the way through is great, but it also means that there's still two thirds of it to go. This is meant t obe the good week, but I've been having a very hard time motivating myself to do anything at all.
Actually this may be hormonal , and not simply chemo-related....
Anyway, I suppose you're bound t oget really down at some point during the process. Thankfully, we are going up to Yorksihre to stay with my sister for the weekend, which should provide some light relief.
love and hugs to all, especially those having the poison this week xxx

[Cressida]

Hi Mandy - hope things go OK today.

I have seen other threads about private medical treatment and other ladies have said they were able to go to the NHS but get a cash payout from their insurance company for each NHS treatment they had instead of the private one. Of course you can transfer to the NHS - everyone can! Nice nurses may be all the private sector has sometimes. Don't forget they are getting cash from your insurance company to be nice to you. Sounds like you wouldn't even need to change consultants so it would be prettty seamless. Some of the NHS nurses are more grumpy though. Hope you don't feel we are shouting at you - would like to shout at whoever wants you to put FEC-T through your at risk arm. I am shocked by the stuff they dump on us when we are scared and vulnerable. Big hugs, xxx

As for me I received my poison yesterday so I am back to marmite and steriods this morning. Oh joy. Hope everyone else is bearing up, Caroline - where are you? Please pop in and let us know how you are.

xxx

[mandyp]

Hi all
I'm embarrassed to say it but i am a private patient at a BUPA hospital......as I have Private Health Cover through work.....I am being treated by the same consultants that I would have done if I had been NHS. I have asked both my surgeon and onc if i would receive better treatment on the NHS as we have a brand new oncology centre (I live in East Yorkshire and the nearest hosptal is Hull), as I wasnt particularly impressed with the ability of the nurses in the hospital at handling a neurotic, frightened woman of 46 with 3 young children having a life threatening sh*t f**k disease......
added to which it took 18 days for my Lymph node biopsy to come back - this was reported as a critical incident (although strangely i have heard nothing since...)
They both suggested that I would be fine where I am and to be fair, the chemotherapy nurses are lovely.........
.......Oh dear...what a bloody mess!!!! I am due in at 10am tomorrow and will have a rant and see if I can get transferred to the Queens Centre for a PICC line......
Thank you all so much for your support and concern - I am totally blown away by it.........
Hope FEC3 is uneventful for you Marie.

xxx

[Cybele]

'Everybody hurts...' :

today's post on http://chemonights.blogspot.co.uk/

[QueenDrama]

Mandy I hav a picc line - and wouldnt cope without it. There are other alternatives - portocath lines etc. If your hospital wont do it - demand to be sent to another one! This is the NHS !!!!!
Have a fab time skiing Alpal!
Good luck today Cress! x

[Alpal]

Thanks lovelies for the heads up on Fosapprepitant - i had horrible nausea last time for my first FEC and it's great to have a little insider knowledge, if a bit annoying for them, when i go back in on monday for round 2. The other thing that has come to light recently to me is the link between Hodgkins Disease and Breast Cancer (I had the former as an 18 year old) which has been known about for some time apparantly. I can't quite believe my GP's (i say plural being Armed Forces we move around a bit) hadn't made the connection earlier and suggested i go for annual Mammograms and perhaps i could have picked my what was obviously quite an envitable ticking timebomb tumour up at the grade 1 level. Another case of 'slipping through the net' i fear. Oh well..........
Now on to some good news - got my new wig, she's called Tatum (after O'Neil I assume) and she's rather foxy. Going sking at the beginning of Feb (chemo effects permitting) but i'm rather dreading losing too much hair and having to wear her and a ski helmet aswell and then removing said helmet and 'Tatum' coming off and all this happening right in front of a bunch of gorgeous French Ski Instructors called Xavier who have met for a drink in a bar in Meribel......oh yes, i've REALLY thought this through!
Hugs girls, keep the faith xxxxx

[lolly123]

hi Mandy,
i have a Picc Line and my local hospital didnt do them either so i was sent to the Hospital that did, so if i where you i would ask the question of where you can have it done, i agree with Cybele dont let them touch your good arm, they must have somewher they can send you.
Hope you get sorted soon.
Lolly
x

[Cybele]

No, don't be daft, of course i didn't think you were having a dig, Cress 🙂
It would never even have occurred to me...
Anyway, I didn't even see your post between writing my first post and my second post! i merely paused for breath after writing the first one, and the nstarted the second..
I've been thinking a lot about the whole business of veins and PICC lines, and standards of care, in the last week, and was planning to write about it on the blog, soon, so this whole issue is right at the forefront of my my mind.
I was just gob-smacked when I saw what Mandy had written, and how her 'hospital' - it doesn't sound like much of one - was treating her. Am still FUMING.
Anyway, good luck wth your chemo today, Cress - let's hope they do a bit better than the last inglorious attempt... xxxx

[Cressida]

Cybele - I would never suggest you stop ranting - I love it that you are passionately sticking up for your chemo buddies (and I include me). I am sure you don't think I am having a dig - but chemo paranoia makes me want to make sure you don't think that. xxx

[Cybele]

I actually came on here this morning to whine about how fed up I am with the whole chemo thing, but reading about what Mandy's 'hospital' were proposing to do to her just made me see red.

Everything I have read about lymphoedema - and I've read quite a lot, because I had the choice beteen having all my lymph nodes taken out OR chemo, because i just had one micrometastasis in my sentinel lymph node - tells me that even if you've justhad one lymph node taken out , you need to be very, very careful with that arm for the rest of your life - because there is still risk of lymphoedema, but if you've had all the lymph nodes taken out then the risk is very high, and you must be uber-vigilant, but in either case, YOU MUST NEVER LET ANYONE DO ANY KIND OF MEDICAL PROCEDURE TO YOUR 'BAD' ARM, OR ANYTHING WHICH INVOLVES PUNCTURING THE SKIN.

So to me it is beyond belief they are suggesting putting chemo drugs into Mandy's bad arm, having already ruined the veins on her good arm.
Of course, I'm an amateur, not a doctor, but it seems like a clear case of medical negligence even to suggest it. Maybe there's someone on here who can tell us different, but if it were me I would refuse point blank, and insist on having a PiCC line put in my 'good' arm - the PICC line goes in the upper arm, so it won't affect the veins that have already been ruined. Putting in a PICC line takes half an hour. It costs the NHS something, but it is a STANDARD procedure, not some exotic extra.

And if they refused I would demand a second opinion, or a medical ombudsman, or whatever authority you can appeal to.

An awful lot of really bad things happen to people as patients because medical staff are trying to save money, or just can't be bothered to think about the potential bad effects on patients.

And I would say this to anyone on here who is uncertain about what's being done t othem, and tempted not to make a fuss, and just go along with it: DON'T LET THEM DO ANYTHING TO YOU IF YOU HAVE DOUBTS ABOUT IT.

YOU are the person who has to live with the consequences, perhaps permanently, if they inadvertently do you any damage.

You only have one body, and one life. And a bad case of lymphoedema can considerably reduce someone's quality of life.

Sorry, I am ranting, but I feel really, really strongly about this.

[Cressida]

I knew Cybele would be along to stick up for PICC lines. Go girl

[Cybele]

Mandy, have only just noticed what you wrote about PICC lines - and having woken up rather cross this morning, that has moved me right up to enraged.
It is your RIGHT to have a PICC line - and there is no way you should let them near your 'bad' arm, the risks are too great.
They've already fried the veins in your good arm with the poison- don't let them start damaging your other arm, in which you have a life time risk of lymphoedema, which is a HORRIBLE condition, and very hard to get rid of, onceyou've got it, by all accounts.
You are not even meant to have blood taken, or bllod pressure done, on your 'bad' arm - WHAT ARE THEY THINKING, to suggest they start injecting chemo drugs into it. I hate to sound prescriptive, because it's your decision, but I REALLY don't think you should let them anywhere near your bad arm.
If they can't do a PICC line, at your local small hospital, then demand that they send to the nearest place where they do them.
IT'S A NUISANCE FOR THEM, BUT THEY ARE NOT THE ONES WHOSE BODY IS BEING DAMAGED, OR WHO WILL HAVE TO LIVE WITH THE DAMAGE BECAUSE THEY CAN'T BE A***D TO CARE FOR YOU PROPERLY.

[Cressida]

Caroline - how are you today?

Mandy - I feel a bit concerned that they "don't do PICC lines" so they think you don't need one. Do you live on a small island? Maybe you need to ask them to go over this decision and the risks again. I don't know the stats, but I think if you "just" had a mastectomy with no sentinel lymph node biopsy or lymph node clearance then the risk of lymphedema is less, but I don't think it is the same as a woman who did not have Mx. I remember when I had my Hickman line I was allergic to all the dressings except one; one day that dressing fell off the list of NHS prescriptions, and, all of a sudden, I didn't "need" it any more. It seems we only "need" things that are available. If you are happy with the risk then I will shut up, but make sure they have not bullied you when you are vulnerable. You can go to another hospital if you want to. Sorry you have to put up with this rubbish - hope it resolves in the way you want. xx

Today is the day I try to catch up on chemo - appointment at 11.30. Corsodyl and Movicol at the ready.....

Good luck to all having chemo this week and all living with the effects, xxx

[Cybele]

Caroline - you qualify for emend - they should give you the intravenous version, Fosapprepitant, because you won't be able t o keep p the oral version down. the hospital should give it to you, if you are near enough.
I went into A & E and got IV anti-emetics - if you're throwing up, it's ESSENTIAL.

In other news:
'Intermezzo: A Positively Unromantic Interlude'
:today's post on http://chemonights.blogspot.co.uk/

[mandyp]

Marie's right Caroline - get your GP to come out. Remember we should all get preferential treatment....
Hope everyone else ok....
i'm just preparing myself for 3rd FEC on Thursday......!!!! ARGHHHHH!!!!!!
They cant use my right arm anymore as struggling with veins....so have agreed to use left even though they originally said they would never use my left as on mx side....????? oh well and they dont want to do a PICC line (actually the little hosptial that I'm at dont do PICC lines!)
lots of love xxxx




xxxxxxxxx

[Mindy63]

Caroline-I think you should get in touch with NHS 24. If you are throwing up you won't be able to keep anti sickness pills down. Your doc should come out and give you an anti sickness injection. Fingers crossed for you.

[Cressida]

I think being sick on the same day you have the FECin stuff certainly means you should be asking. I put up with being sick on Tax cos I thought it was inevitable, but it isn't and I would not put up with it now. If you have just been sick once, then contact your helpline, but if you keep doing it then consider A&E. Don't be heroic. Ask for help. Hope you feel better soon, xxx

[Caroline60]

Hi ladies, I need some advice. I had my first FEC today. I have taken my inti sickness meds (the cheaper version). But I have been violently sick. How sick do you have to be to ask for Emend?

[Cressida]

I phoned the unit and made them check bloods. I have passed and will be back to getting poisoned along with the rest of you tomorrow. Don't know whether to celebrate or cry.

[Cressida]

Queendrama - I found Tax worse than FEC but a lot of people say the opposite. It made me sick, but most people say FEC was worse for sickyness. It really is true that it just depends and everyone is different. This is very frustrating cos we all want to know what to expect but chemo really is like a sh*t box of chocolates.

The vision thing - who said that? Chemo Brian has struck half way through writing this - I sometimes had the sensation of being stuck in The Matrix, with all sorts scrolling past my eyeballs. Luckily that tended to be short lived and most of the time I am just blurred and short sighted.

Today I have been and had my blood taken. If my neuts hit the (unknown) magic number I will be getting GemCarbo number 3 (or 2(a), depending how you count) tomorrow. Will be phoning later and demanding results. Not waiting until the morning. Also Kevin the door man is actually here, actually fittng the door. Looks quite nice.

xxxx

[Cybele]

hello, my Sisters In Chemo.

Nothing much to report here, just the nausea...
Sand, I'll be having FEC3 next Wednesday, January 23rd, so we are pretty much exactly in sync.

QueenDrama, I haven't had Tax, but from what I've read on here, it generally sounds considerably nastier than FEC - although FEC of course, comes with Extra Added Weapons-Grade Nausea - it has for me, anyway.

If you are generally liable to nausea, it's worth doing what I did, which is to demand intravenous Fosapprepitant upfront. It's the gold Stanard of anti-emesis, but expensive, so they generally use it as a second line treatment, not a first line treatment, but if you have a known pre-existing problem with nausea, it is possible to get it from the beginning (I'm talking NHS, obviously)

[Mindy63]

Queendrama I had some chest pains with Fec. I found that when I was dropping off to sleep I kept having those 'falling off a cliff' moments where you wake up gasping. The onc thought that was heart spasms and didn't want to risk it. I now wonder if I was being overly dramatic. Other than that fec just made me nauseous for 5-6 days then a bit under the weather, oh and I had loads of nosebleeds.
I've had chest pains with TC too so maybe that's just me. Tc was awful for first week to ten days but I have had great days since. I would say with TC you get a much more immediate dip (a double dip even-maybe the 2 drugs kick in at different times) but when you recover it's more rapid. That's been my experience so far. One major plus is that I had absolutely no nausea and I think that's the norm. The eye thing sounds horrible.
Cybele-Enjoying the rat adventure-no chance it could be a squirrel? One of my neighbours had a squirrel in her loft and manage to trap it. She then travelled miles, right across Glasgow to rehome it (not legal, I know). A few days later she discovered baby squirrels in her loft!!!

[QueenDrama]

Greetings from snowy birmingham. My husband went to get me a wig liner this morning (wonderful invention!) and couldnt get into the car for a while because it was frozen! He had to use 2 hot water bottles before he could get to the key hole!
Hi Maire in what ways did fec affect you? I've got one more tax then 3 x fec and I was told that tax was worse so was hoping that fec would be a breeze.
The ony way I can describe my left eye this morning is pixellated! Has anyone else felt that? x

[Cybele]

The North Yorkshire Rat Apocalypse Revisited :

today's post on http://chemonights.blogspot.co.uk/

[Cressida]

More snow in Bedfordshire than Scotland? Now I know the universe has it in for me. We cancelled our meet up, but we will do it again - so - anyone near enough to join us in a few weeks? I have already kidnapped someone from the January thread so 3 of us so far... Sorry if it is a bit exclusive. When we are chemo free we can go further afeild and more of us can meet. Don't forget the summer Christmas party, xxxx

[Mindy63]

Queendrama-I know what you mean about 'couldn't settle to anything'. I literally couldn't sit down. I either shuffled about the place or had to lie down. Sitting made me feel too agitated. On the plus side days 10+ have been really good and I haven't felt as though I was on chemo, unlike FEC which made me feel below par the whole way through.

[QueenDrama]

Afternoon ladies! Well the tax truck is parked on my drive (thats how it feels - that I've been knocked down by the darn thing!) I feel totally stoned and today I couldnt stop shaking. I couldnt settle to anything but feel a bit calmer now. My left eye feels like a glitter ball - v odd sensation.
Cressida - Thanks for the corsodyl tip - its really helping
Cybele-got on to your blog Very entertaining!

Here's hoping that tomorrow will be better and thanks that Iam a thiord of the way through this rubbish!!!!

[Mindy63]

Morning Crackers,
Only a dusting of snow up here in Scotland (central belt). Gorgeous clear skies and some icy puddles. If we get more snow, I hope it's just a further sprinkle because next chemo is looming and my legs were shaky enough with the last lot without slippy surfaces to contend with.
I am so dreading Thursday. Getting my loading dose of Herceptin as well as TC. Yikes!
Cybele-I enjoyed your last blog post. This really is a great forum and I have also been dipping into the other chemo threads to get a heads up on SE's further down the line. You learn so much and it's good to find reasons for some of the feelings we're experiencing.
Good luck with the snow and chemo this week crackers and hope neither knock you off your feet!