Starting Chemo in December.2012

Morning all,

Welcome Sheila - what can I say? - seems to be a few of us here doing it all again so we can all help each other.

Sue - what a nightmare. Hear, hear to TREATABLE.

Cybele - Chemo is def an Old Testament scale baddie. I too watched the G&S marathon last night, it didn’t exactly drive Maob’s sons to hell but it made me laugh. Due to chemo brain (I still have it from last time - bad news girls, it takes a while) I forgot to order new marmite, but fortunatly, from the days when I used to cook meals rather than heat them up, I had an old jar lurking to make stock. Managed to scrape enough out to have toast and steriods this morning. Now I just have to worry about old it was and what diseases might be lurking…

Maire - I meant to say I had a sore throat off and on all through FEC-T. I think it is a weak attempt to fight infection and also the general frying of your entire digestive system. If it is mild and you don’t have a temp then prob don’t panic. (Disclaimer - Cress is not a doctor).

Right - Kevin the door man cometh this morning so I had better get my scariest biggest dressing gown on.

xxx

Sheila - welcome. Everybody is lovely on here. I too had a gap of 14 years before wham take another dose of this bloody awful disease. I have a primary in the other side having chemo before surgery.
Sue - so so sorry to hear your new but as others have said hang to treatable I am sure it will be but obviously every bodies biggest dread. Assume they picked up on CT scan.

Cybele- lets hope you are on the up and you feel better for Christmas - or have you another one by then ?

Love to all

Wendy

Morning All, been a while since my first post. just caught up on all your news.
Sue - Its all treatable - u hang in there.
Cybele - Hope you have a bit better day today, I cant belive you have been feeling so crap, BC nurse told me 1st chemo would only be poorly for first 24 hrs!!! after reading your posts Im not so sure I believe her.
Im feel as though I turned a corner this week and I actually feel loads better now im 4 Weeks post op, I even have been able to look after my kids on my own for two days and enjoy a glass of wine at a christmas party yesterday. which makes the thought of having Chemo in 10 days even more daunting. What a rollercoaster, I wasnt too bothered when I felt poorly, as I just thought oh well cant feel much worse!! but now I am feeling more myself its upsetting to think Im going to be poisoned…
Read through the top chemo tips too very interesting, but had a little cry, ordered a digital ear thermometer thought best be prepared (I too feel paranoid about getting too ill and ending up in hospital- need to fill the house with hand gels !!) Kids are full of cold - hoping i dont catch it.
Got consent appointment tomorrow -
Hope everyone one has a good day

Hi Sheila,

Sorry to hear of your diagnosis, but I’m sure you’ll get lots of good, honest support from the many informed users of this site. If there’s anything you need to know, just ask away there’s always someone with knowledge or experience, plus our helpline team are just a free phone call away if you need them, 0808 800 6000 lines open Mon-Fri 9-5 & Sat 10-2

Take care,

Jo, Facilitator

Shawshank-Glad you’re back with us. Have been thinking about you and wondering where you’d gone. Rubbish news but as everyone says, the experts have told you it’s treatable (and they don’t sugar coat things). I’ve read so many stories of tumours shrinking and even disappearing with the right chemo combo. That’s what I’ll be picturing for you!
Cybele-So glad the nausea is subsiding. Get your hopes up I’m sure it’s onwards and upwards for you. I def noticed an improvement on day 6. As for the finger numbness. That happened to me too. My right pinkie went really numb esp when I was sitting at keyboard. I phoned the unit and they said it was unrelated. Don’t believe them! It has gone now though-the numbness, not my pinkie!
Cressida-thanks -for the reassurance about throat. I think you’re probably right. Throat a bit sore this morning but I am not unwell so will continue to ignore. I get bloods done on Wed and I will be giving them chapter and verse about s.e.s -I am secretly hoping they’ll delay Thursday’s chemo just this once because I would love to be symptom free for Christmas day.
Sheila welcome! Looking forward to your posts. Sad that you’re on this journey with us all. One thing’s for sure-it’s a companionable journey

Afternoon ladies have just driven to local Morrissons and HAD to get surgical masks! What is with this paranoia??
Cybele so sorry you are still feeling ropey but big plus you still talked to us all and we love you for it. I have also just read your chemo demonology link Thankyou. I too will have to be escorted I am sure scared scared scared feel I should ring BC nurses tomorrow as really not sure what’s going on next week, I know I have bloods taken on Tuesday but who can tell me if PICC line and first FEC treatment going ahead? Again silly question what is the marmite about and should I be eating it?
Sheila, as you can see above my PICC line also delayed due to infection as if we are not anxious enough already. So still sobbing my way through days and getting through plenty of antivirus tissues, better out than in apparently. So let’s see what next week brings for us both.
Sue how upsetting for you, I am sorry but the ladies in the know on this site are right, focus on TREATABLE, you can do this, no correction, we can all do this together.
Thinking of you all now had a diazepam (hurray), my mummy made me a hot water bottle and I have banished my 25 year old daughter to her room complete with surgical mask As she has a cold. And feels sick! I just want to cuddle and comfort her she must be so scared and I know my husband hates leaving me each day. He is a chauffeur so six days on and three off but needs must as I’m afraid we need his salary. I am on full pay for six months but usually do overtime which of course is out of the question . Oh we’ll let’s end on a positive … Love you all and it’s good to talk to you wonderful ladies .Might try a nap in a surgical mask!
big hugs to you all
Cathie xxx

hi all just want to share some happy times i had yesterday, as you can see i have changed my profile picture, my friend in the photo has raised 1060.00 so far for Breast Cancer Research, for shaving her hair, we had a bit of a head shave party yesterday with a few of my close freinds, and i am so proud of her, what a star, i am worring about loosing mine, and she shaves hers to try to raise a bit of money for a great course, if you want to see the video i have posted it on you tube, just type in sharon hobson and you should find it.
hope everyone is feeling as best as they can, i am at a stand still at moment as nothing is happening until the 27th when my picc line goes in but i am still reading all your posts to see how you all are, take care and look after yourself big hugs to you all x o
lolly x

Cathie, this is probably entirely inappropriate, but I just HOWLED with laughter at the thought of you all in your surgical masks. Maybe I’ll get R to get some too, then we can play Doctors and Nurses, if nothing else…

And the Marmite is Cressida’s particular little food fetish - no relation to curing cancer, as far as I know. The other day she ran out, so we’ve all been v.concerned about the replenishment of her supplies.

My own bizarre practice is licking the salt off M&S Lightly Salted Tortilla Chips, which actually have plenty of salt on them, and it’s lovely. And helps with the nausea. Given that Marmite is so salty, too, maybe this is an emerging theme. Or maybe Cressida would like to stand up and tell us about her life-long addition to Marmite, entirely unrelated to chemotherapy, and how it has ruined her life. We’re here for you, Cressida…

So, anyway, you know I posted gaily this morning about how maybe the nausea was easing slightly, at last?

BIG MISTAKE.

No sooner had I posted that than it started to get worse, and continued to do so, to the extent that I started thinking that I needed to get some more antinausea meds, as the Ondansetron finished yesterday morning, and there was only Dom Peridon, and it no longer seemed to be working.

So, mindful of how many people had told me that ‘you don’t need o suffer’ and '‘if you’re a chemo patient, they will get you drugs 24/7, if necessary’ I called the Charing Cross Chemo 24 emergency number.

And it rang and it rang and it rang. And there was no voice mail. Thought I must have wrong the wrong number, so checked and tried again. Still no answer, after repeated calls. This is about 10.30 am this morning.

And my OH was out, briefly, so I was on my own, and at that point I just had a complete meltdown , and started crying my eyes out.

I’ve managed to hold it together all week since the chemo, pretty much, but this just sent me over the edge, even though it wasn’t really a huge emergency. I just felt so, so sick, and so,so helpless and the people who were meant to be there at the end of the phone, 24 hours a day, WEREN’T.

Poor R came back with the papers and found me howling out what was probably my entire accumulated angst since the diagnosis in September, having left me half an hour before being perfectly cheery. Not much fun for our partners, they never know what is going to happen next.

We tried the Chemo Line again, still no answer, and gave up. It didn’t rate an immediate A&E trip, so I gritted my teeth and kept self-medicating with the Diet Coke and salt. It also occurred to me this afternoon, rather belatedly, that since there are still quite a few of the Dom Peridone left, it might help to increase the dose, which for some reason I was regarding as sacrosanct. So now I’ve taken 3 instead of 2, and am going to have an extra dose tonight. It says on the info that in some cases te recommended dosage may be exceeded. At this stage in the game, though, I’m so ignorant I’m a bit nervous about messing about with dosages.

Anyway, now feeling a bit better - it generally seems to get better towards late afternoon/early evening, and can cope.

But will talk to the hospital tomorrow and ask for some kind of nausea meds consult.

(edit) Ooh, lovely pic, Lolly, and what a great friend!

‘Don’t leave me hanging on the telephone…’

Today’s post on [color=#290cd4]http://chemonights.blogspot.co.uk

Good evening to my lovely fellow sisters-in-arms - right, i’m now starting to crawl out of my denial cocoon (fab party last night) and have a meeting scheduled tomorrow at 2pm with my Oncologist - OH MY GOD - this is really freaking me out. I can just about get my head around Chemo and surgery but i’m terrified he might say ‘i’m sorry but the CT scan has thrown up some other serious horrors’. Got to tell my boys tomorrow too - teenagers hate this sort of thing, anything out of the ordinary disturbing the balance of their slightly self focused lives and an ill Mum with no hair frankly won’t fit in with their plans. Still, going to have to be spectacularly self-focused myself now and try and get myself treated and well again. Thank goodness for this website - otherwise i’d now have to be telling all this to Barney my Jack Russell who would feign interest but frankly couldn’t give a monkies…
Cybele your blog makes great, interesting and reassuring reading for us newbies - thanks for writing it…i’m hooked! And i’m so sorry you had such a horrid day feeling norz when you had no meds and your OH popped out. What a complete nightmare - big, big hugs of the hugest sympathy (i had chemo back in 1985 for Hodgkins Lymphoma so this is not unknown territory for me) and was as sick as a pig. I just hope to God the meds have improved considerably since then. x

Hello Alpal
My heart goes out to you telling your boys tomorrow, and I will be thinking of you. I was diagnosed with breast cancer in September and have just had a mastectomy and now awaiting the news of which treatment I will need. Telling my boys (aged 25 and 28) and my mother of 82, was the worst thing I have ever had to do in my life, but once they had been told, I immediately had the love and support from close family. The waiting to tell them was the worst.
However you plan to tell them, it probably won’t happen like that either! My thoughts are with you at this difficult time.
xxx

Well you have all been very busy and my poor brain can’t answer you individually.

Breaking news - marmite does not cure cancer - if it did I would be fine. I just like it.

I had a bit of a wobbly yesterday as slime has started to grow in my mouth and I could see all my Xmas goodies (and my marmite) becoming tastless so we had Xmas dinner yesterday. Sprouts and crackers and everything. I even wore my paper hat.

Hang in there ladies,

xxxx

Hi everyone
Oh Cybele you poor thing feeling so sick, you would think you would have been able to get hold of someone which when they give you the chemo card with all the numbers they of course assure you you can, clearly not! So glad my surgical masks managed to give you a little laugh. I think when I finally get my date, and I have just rung BC nurses to see if they can give me any further info, I am going to ask for every anti sickness drug going, plus anything else (maybe not the marmite then, Cressida explain yourself!) and we’ll done you Cressida for eating your sprouts, can’t stand them myself as my husband working Christmas Day think we are just having nice cottage pie and veg and will do whole Christmas thing in the summer of 2013 as I really can’t cope with it all so hats off (paper or not) to you all.
Alapl my heart goes out to you but our children continue to surprise us and step up when needs must.
Lolly what an amazing friend, you both look great and what a fantastic sum raised. Like you playing waiting game which is quite horrid but reading all your lovely messages really helps. It is such a massive issue to come to terms with,mentally, emotionally and physically and very frustrating whe things don’t happen when they are supposed to like infections etc.
We will get there together all of us.
Ps Cybele you now know I will have to go and corner market in m and s slightly salted crisps just in case, I have never behaved so abnormally in my life. Think my family have a little respite when I have diazepam as it usually sends me off into a nap, so more of those as well I think, probably not from m and s though!!
Hope you all have a better day and as always Thankyou for sharing.
Cathie C

Cathie, I think if M&S were to start selling Diazepam it would be very, very successful.

I for one would be sure always to pop a packet into my shopping basket…

What do you think is on those crisps you keep licking?..

Oops

Hi Crackers,
I’m on day 19 now. Still got most of my hair but it is coming out in drifts and is looking pretty matted. I can’t and wont comb it so am dreading washing it later this week. I get my wiggy cut tomorrow so will wash hair afterwards. Then it’s bloods on Wed and next Chemo on Thursday. Dreading it! But once it’s done that’ll be me 1/3 of the way through.
Sore throat continues to appear sporadically so am gargling away with the occasional gag moment if it some salt water escapes down throat.
Have very hot eyes too so will ask for drops.
Must admit when I look in the mirror I think I look really old. Just purchased some eye cream to help with wrinkles. Seems to work when looking in mirror in dim light and with stocking over face!
Finally on the subject of sprouts-very good at allieviating constipation-a little too good perhaps. Now what about trying those with marmite!

Mmmmm. Marmite sprouts - anyone got a recipe?

Hi i am starting chemo on 27th Dec , seen oncologist this morning. Taxol and Avastin (weekly Taxol for 12 weeks. I think it was fortnightly Avastin, cannot remember now)
Discussed the cold cap anyone tried this on this regime ?? does it work? also have aletter for a wig. This is my second trip down this road, had BC in Jan 2008 had 6 x FEC WLE and rads. Got mastectomy to look forward to at the end of this , unfortunately i also have a small lung nodule too. So hopefully chemo will blast that too.
Any tips of advice welcome. At least i can enjoy my xmas lunch , hubby glad he will not have to do the cooking!!!

Sarah66

Sarah

you are very similar to me I am also on second time round after 14 years. Waiting on scan results chemo to start 31st then surgery after.

Wishing you well for 27th not sure it is easier second time round as we know what is coming !

Keep in touch would be nice to know how you are doing and hopefully your chemo wll blast it

Wendy