‘My (entirely hypothetical, obvs) funeral arrangements’ -
today’s post on chemonights.blogspot.co.uk/
Morning Crackers
2nd FEC yesterday and felt shocking all the way through and all of yesterday - what was that all about??? didnt get any sickness last time, just headache and tiredness.
my back pain is bothering me and i am getting very worked up about it…so they have agreed to do a full body scan…
what are the chances of it being in my bones? I was grade 3 26mm totally removed with mx and of 3 nodes checked all clear (why didnt they take more nodes???)
Is this just tension, am i torturing myself…i am not making the back pain up? cna tension really do this to you???
xxx
Mandy, sorry to hear you’re feeling rough. Ride the storm-we’re all rooting for you. I’d have been rough if I’d had my 2nd fec when due as I didn’t have the Nirvana week as promised!
Think you are quite right to have a scan. I’m going to ask-nay demand one-at the end of all this. Though I had no lymph node involvement I have a niggle in my collar bone which was dismissed as probably due to radiotheraoy last time. Not good enough for my tortured mind!
Update on TC: so far so good. No nausea but have gained 2 lbs overnight. Feel a bit jittery and had 2 hours wakefullness overnight followed by delicious sleep till 11.30am. Chemo brain is back and spelling is very difficult. Not sure I’m fit to drive.
Marie - thank for your reply - yes tortured mind indeed… i wish I could find it in me to say fingers up to it all and bring it on…but I cant!
when is your next treatment and what number are you on?
Hello everyone sorry been off air for a couple of days struggled with the whole Christmas thing but we did get through it. So Cybele well done you and Cress and in fact all of you who seemed to just get on with it. Cybele I am also trying to cut right back on diazepam as also highly addictive bit I think wwe need to recognise wheN We need one and that’s Not always so easy. My husband so just thinks I have gone completely bonkers I think. I to am in no fit state to drive.
Teal I have cried and cried and cried . Can’t control it sometimes. I am on day 9 after first FEC and now getting myself worked up about next one. Will I be we’ll enough, on the one hand I want it over ASAP but delays always panic me but then you read some of the other ladies comments and a delay sometimes helps, how confusing this all is. My next ONC and blood checks on 8 Jan and then second FEC booked in on 10 Jan. Like you I have 6 in total . Ask for really really strong anti sickness tablets and the other ladies are right take them regardless. And yes you are right it will be two down and four to go.
Lolly glad all went well with PICC line. Call the they yey really reall ca help I seemed to have phoned and asked the most ridiculous questions but they are always so helpful as is this site. Then I used to feel guilty about calling them but any worry you have you must ring and ask, it really won’t help if you keep the worry/ies to yourself . And don’t feel a wimp about cold cap I couldn’t face the thought of it either we are all different.
Mandy so sorry your second FEC was so much worse . Why would thus be can anyone answer us as I am now getting into a dither not mst about second FEC but why horrid spots appearing on my face and one where yiu just would not believe! WHY?? Mandy sorry if its something you have already tried but I still consider myself a newby to all of this so all advice, comments etc are very helpful to me but have you tried the lorazepam or diazepam? Chemo brain kick,I g in think I might have posted some of my post a little early but all I have left to say is good luck to us all and I send you all my love.
Cathie xx
Hi all,
Hope most are having a happy Christmas, in spite of everything.
I haven’t looked through the whole of this thread, as it’s massive!
I’m a 35 year old woman, and was diagnosed with BC in November. I started chemo yesterday. Doing FEC-T backwards (started with the T), because I’m doing the Artemis trial. I’m doing chemo before surgery, because there’s something in the lymph nodes too, which they want to stop in its tracks before surgery. Had a spectacular anaphalactic reaction to the drug, and ended up laid out on the chemo suite floor with antihistamines being pumped into me!
But I’ve been feeling not-too-bad today. Just a bit tired and slightly achy. It seems from some of the comments that the FEC is worse…
BTW, is anyone going to the younger women’s forum in Bristol in Jan?
Hugs,
Elee
hi all been in to have my dressing changed on my picc line, that went well took bloods from it and had it flushed thorough, all preaty straight forward, found out i have to go in at 11.30 for my first chemo, then let the fun begin,only three more sleeps to go, that if my body lets me i cant sleep at the moment, keep waking up around 2am then toss and turn for the rest of the night. going to have a few bacardi’s tonight, gona be brave tomorrow as new hair cut again, going even shorter, maybe a number one, watch this space lol x
take care everyone speak to you real soon hugs to you all xxoo
Hi all
Thanks Cathie - went to doctors this aft and they think I’m better of talking to people rather than offering me anymore drugs!!! I think they think I’m neurotic! never mind! I am taking quite strong sleeping tablets and now on anti infammatorys for back amongst other potions! I’m to see a herbalist st the Haven in Leeds. The guy who did my massage mentioned holy basil for stress! Anyone heard of that?
Hi Elki - sounds like you had an eventful day and you still sound so upbeat which is just amazing. The trial sounds interesting. I’d heard that the T can be worse but I think everyone different!
Xx
Hi Elki what is the Younger Women’s forum in Bristol?
x
Hi I’m a newbie to posting but have been lurking for some time - but as a bit of an oldie (56) am very slow at typing - stil only use 1 finger ! (or occassionally 2!) Had a mammogram end of October had arecall & bioposy & then got the diagnosis.- no not diagnosis the bombshell. Lump about 3 cms & spread to the lymph - but had some better news last week had CT scan & full body scan & only showed one nodule on the lung which could be benign. Having chemo, followed by surgery then radiotherapy. Had first FEC chemo on 7 dec & 2nd FEC today. Didn’t do cold cap as suffer from migraines - my hair was very thick managed to do without headscarves or wig until yesterday - but really gives you a downer when it kept coming out in great clumps & still find it depressing looking in a mirror at virtually bald head with just a few wisps. Felt nauseousb ut was not actually sick for first few days after 1st chemo & thought I was doing well & would be able to cope but day & got caught out by terrible heartburn, aches, feeling totally groggy and hallucinations at night. (which I was told could be a rare side effect to the steroids even though by then I had finished taking them!) But after anothrer few days felt really good most days - which was just as well or i might not have turned up for another dose today! Husband is trying to be supportive but unfortunately had to have a major operation op his foot (he had polio as a child) on 23 Nov & couldn’t walk on it for the first 2 weeks and is still completely housebound & should not walk on it using the special shoe he has been given on it unless he has to-so I have been nursemaid -not a role I’m good at it at any time! Daughter (24) still lives at home but she was on teaching pravctice until last week so is working really hard & her boyfriend has just come home from uni. She took me for appointments every dayt last week & took me to chemo today. I got a lift last time & went by myself & both son & daughter were annoyed when they realised they could have come with me! Son doesn’t live too far way & has also taken me for blood tests & scan when he can. Anyway won’t bore you anymore! Keeping fingers crossed for no side effects at all this time - watch those pigs flying! Doesn’t bode well thastr was given Enmed before the treatment & then had to take another antisickness tablet during the treatment!
‘An act of senseless violence against an entirely defenceless domestic appliance’:
Today’s post on [color=#290cd4]http://chemonights.blogspot.co.uk/
Hi Elee, I’m Alex - your situation sounds very similar to mine (although i start chemo on monday and will hopefully not be allergic to their drug of choice). You poor thing, that must have been dreadful. I too was diagnosed in Nov and have some lymph node involvement and will be having surgery after some hopeful chemo-induced tumour shrinkage. I’m not Bristol based but live in Bath and a distinctly young 46!! Are you having the cold cap? Are you impressed with Bristol? RUH Bath seems OK but is sadly pretty grotty externally and the corridors can make you wince - but hey, as long as they are spending the funds on treatments and care…and recruiting delish docs!
Keep me posted on how you are getting along x
hi
not been on for a while hope everyone had a good christmas
had second chemo on 21st although its now been changed cos of the spread instead of 2 more fec im straight on to t not sure how many im havin now though got third chemo on jan 11 wen il b havin t and herceptin then should b havin more scans in feb to c if its shrinkin im also using cold cap but hair has started to cum out loads gettin verry thin but gonna stick with it second one was alotmore painfulthan the first but think this is cos my scalp was alot more sensative so next will prob hurt even more as hair so thin now havin good n bad days still gettin my head round it spreadin n think im slowly startin to getmy fight back just need to get poaitive again hope everyone else is doin well
lastly just want to wish everyone a healthy pain free sidefect free great new year lets all make 2013 the year we kick its butt 4 good best wishes everyone x
sue x
Morning Crackers,
First of all welcome to Elkie to the club no-one wants to be in. I went to the younger women’s forum in Brighton and it was really good. Loads of info and the chance to meet other people in a similar situation. I felt nervous about going on my own cos cancer has ruined my confidence but it was fab and very supportive. Even when I had a mini breakdown whilst attempting to discuss my premature menopause and ended up crying in the bar for about 2 hours. I actually enjoyed myself (apart from those 2 hours - and to be honest I needed that) for the first time in months. Go for it. Also, I was allergic to Taxotere too, but you might be glad to know that it was fine every other time as they give you anti-hist and extra steriods before the tax next time and I didn’t react again.
Mandy, hun, I really hope your back pain is nothing to worry about. Stress can make us very tense and clench up muscles unconciously so that we end up sore. Definitly demand a scan though. Now is the time to get your money’s worth out of the NHS. As for lymph nodes - I was really anxious cos they only took one, but now I realise that they only take the ones that “light up” with the stuff they inject you with - these are the ones that the lymph from around the tumour area are draining through - so everyone will have different numbers taken. I think 3 is actually about average. The fewer the better in terms of future lymphoedema risk. They only need the ones that the tumour has drained through to check for spread. Hang in there.
Cathie - we are all doing the best we can - you can do this - keep it up, x
Lolly - good luck for chemo on Monday
Sue - so sorry to hear about the spread - sending you good vibes for the scans and shrinking. Cold cap - each time I used it was different, sometimes it hurt more than others, sometimes more hair came out than others. All depended on how well it was fitted to the head I think. If you can peservere, you may be glad to know that my hair came back much quicker/thicker at the end of treatment than those who let it all fall out.
As for me - not much to report actually - feeling quite a bit better this week, woohoo. Despite all the Howard Hughes precautions hubby has cold and is banished to the spare room. Very festive. Visited the aged parents yesterday and ate more sprouts. Won’t need the Movicol this week. Am starting to think that this GemCarbo stuff is not proper chemo as I only feel like sh*t for the first one and half weeks and then just knackered. Hope it is working. They did warn me it will have a cumulative effect so I had better enjoy myself now. Anyone for a virtual new year party?
Keep on keeping on, xxx
So many posts - chemo brain can’t keep up. Hello again to Supachick and any other lurkers. And Sarah66 - are you leaving us? We don’t really care if you have the actual chemo in Jan you can still talk to us. Why would you want to go and join those Jan girls? We are much more fun. Maire - well done on chemo 2. And hello H144. Battery nearly flat and need another cup of tea, bye, xx
Hi Ladies and hello to all the newbies.
I am on day 11 today, i have just finished a course of those injections yesterday and omg my back hurt so much and the musles in my thighs, i must admit i did get a little worried. I am continueing to take paracetamol today, my legs still feel achey.
Mu husband has get a cold and a cough of all the weeks he gets it this week when my white cells are down. God i hope i don’t don’t catch it and end up in hospital…it would be just my luck. We don’t have a spare room either for him to sleep in.
MAIRE your wig looks great.
2nd fec on the 9th i don’t whether to do cold cap again.
Enjoy your day and good luck to anyone withs chemo and appointments soon Xx
Sharon Xx
Hi eveveryone had good news yesterday rang hospital as still hadn’t heard about Rosenberg results. They are clear so happy.
Sharon what injections are they ?
Well first chemo Monday it is the dreaded Tax but a least it appears I will only have 4 now nodes clear and providing I shrinks tumour so fingers crossed yet again
Wishing everyone a better 2013
Wendy x x
Hi Alex (Alpal),
I live in Leicester, but my sister is in Bristol, so I’m going to travel over there for the forum, as I’d like to make face-to-face contact with people in similar situations. I live in Leicester, but there apparently isn’t a younger women’s support group here, in spite of the fact that it’s actually quite a large city!
For anyone who doesn’t know, the Younger Women’s Forums are two day conferences, including free accommodation and food, where women under 45 can meet and attend sessions about living with breast cancer. I’ve been to a few work-related conferences before, so feel ok about going on my own. I’m probably more worried about germs on the train!
My reaction to docetaxol was, I think, more dramatic for everyone else around me than it was for me - I just lay on the floor while they stuck things to me! I was so out of it I hardly noticed, and came round quite quickly once they started on the antihistimines. Fortunately a nurse had been sitting next to me just as the reaction started. It’s good to know that it usually only happens once.
I’m not bothering at all with cold caps or anything like that. If the hair’s gonna go, then it’s gonna go. It’ll be back eventually, and I kind of feel that it’s the least of my worries right now.
Reading through other people’s comments, I just want to also say how amazing my partner is being. I don’t think he could be more supportive if he tried!
Stay positive! Hugs x
Hi Wendy
the injections are lenograstim i had a five day course, its to boast your white cells.
so glad to hear your results were clear. Good luck Wendy with your chemo, i have got to do T after my 4 fec.
Love Sharon Xx
Shaz - the sofa works if the spare room does not exist! It’s an emergency and only temporary. You don’t want to breathe that in all night. Now is not the time to be heroic and self-sacrificing. If you have that urge then remember - you are having chemo so you are already heroic.
Wendy - 3 cheers (and posts) for good results.
Hubbie is fixing things today so all the power had to be switched off and my battery went flat. He’s a genius at fixing stuff, must get him to study oncology. He’s currently insulating the porch, which just requires hilarious safety goggles, and has a very low risk of electrocution so the power is back. Has declared intent to get very drunk once he has finished. If only I could join in…