Starting Chemo in Nov 2011

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Oh well thats No 3 done I have had my top up of knights on white chargers and I am at the top of the hill and on the downward slope to the road to NED land.

Was a bit disappointed with my neuts only 2.0 this time so hoping they don’t get progressively worse for my first Tax on 12/1.

Feeling a bit nauseous not bad but it is there in the background but other than that I feel fine, will be taking some domperidone about 9.00pm so hopefully will get me through the night OK.

Hope everyone else who has had their knights topped up this week are doing OK.

Jean xxx

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Following on the religous theme, I am a christian although I don’t often attend church, I do pray and at times of sorrow and joy I find a lot of comfort just sitting in a church and often light candles for family no longer with us or people who are suffering in different ways.

It is because of this inner faith that I am so positive about fighting this disease and being so sure I will get through it from the day of the biopsy when I saw the lump in my breast and under my arm.

As has already been said I understand that not everyone has this kind of faith and I do try not to over emphasis this because I don’t want them to think this is a religous thread and leave, losing all this support.

Jean xxx

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domperidone - makes me think of champagne! lol :slight_smile:

Gill x

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Oh kym after endurin the cold cap I hope you manage to hang on to your hair.

Judes sorry your feeling a bit down… You are allowed to feel like that but so long as you dint stay down… If you are feeling like life is getting on top of you then why not go and speak to your gp or yiur BCN and they can maybe organise for you to see a counsellor or prescribe medication to help you feel better.

Gail it’s very unusual for a primary breast tumour to be described as inoperable as the breast as an appendage so even when there is swelling iv never come across this, even in inflammatory breast cancer but I can understand what they are saying about giving the Chemo first in order to shrink the tumour and it’s meant to have very positive outcomes in large tumours in young women… So hope it does lots of zapping!

Paula I’m sure we will all be here for plenty more Christmases… But I stopped doing Christmas cards a couple of years ago and make a donation to Maggies centre instead… Well done for going shopping a silly o’clock… BTW. Your brothers holiday villa sounds amazing… Good place for a meet??? lol

But seriously im really looking forward to meeting you all too… Will need to find out when everybody is finished treatment and where we should go… I organised a meet up last year for 20 of us 2009 girls… It was in a beautiful cottage in Whitby with hot tubs and jacuzzi. Loved it!

Gill hip is better, knee still a bit achy and now ribs on left are side are sore think I just keep over compensating as pains keep jumping from one side of my body to the other.

I am not very religious but I feel I am quite a spiritual person and I do believe in god I’m just not really a big church goer, but do go occasionally and I do say prayers.

Kym I have the same problem with the autocorrect on my iPad and iPhone… Sometimes the things it changes to are sooooo random… And thanks… Enjoy Christmas at your sisters… I’m looking forward to my family coming to mine for Christmas… Just making a big list as mum and I are going shopping for all the food and drinks tomorrow.

Strong woman your neuts are normal and your platelets are only a wee bit high and I dont think it would be enough to stop you getting Chemo… Mine were 423 for Chemo no 2… Just try to keep as active as you can and drink plenty… If your not mobilising much you can maybe get ted stockings to wear when your resting… If you get any sudden onset of pain in your leg or chest or breathlessness not caused by exertion or illness like asthma get in touch with your unit immediately… Think it only becomes serious when it’s over 700… So you should be fine.

Trudi Iv had to get swab done today of my Hickman line neck wound as it was red and oozing so now on a course of antibiotics for seven days, not concerned about it being a clot though… I would have thought if they were really worried yours was a clot you would have been sent to a and e tonight as it’s usually considered an emergency… It’s very rare to get clots in your arm and even rarer to get in your lower arm, but maybe it’s an infection if you ave any wee cuts on your hand or arm… I had an infection in my arm a few tears ago when I pricked my finger on a staple… Fingers crossed you just need some antibiotics,

Jean neuts of 2 is pretty good when your on Chemo… And they do tend to get a bit lower as you go through Chemo and on tax you usually get higher steroids to help boost your White cells… My neuts were 9.58 before last Chemo but I’d taken two lots of steroids by then so they do work! They were 1.97 before the previous Chemo and hadn’t had any steroids that time.

Love and hugs Lulu xxxx

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Dear all
Just wanted to pop in to wish you all as decent a Christmas and New Year as is possible under the circumstances. Guessing some of us will mostly be sleeping… Can’t believe I only read the posts yesterday and now four more pages to read. There’s no way I can digest you all! I’m feeling v. tired, fed-up and apprehensive about tomorrow. We have to be up at 5.30am to get to hospital for 8-ish, taking the boys with us to drop at my sister’s beforehand. Hoping to have the PICC line fitted; well, not hoping but feeling I should to save my vein. Someone mentioned sore arm and clots! That’s worried me as my arm’s been sore for weeks and I just assumed it was the poor chemo vein hardening and bruised; hence asking for a PICC line. Never even thought of clots! I too have another heavy period. They seem to be every three weeks; also what looks to be small clots but no pain; just tired with it all. Sometimes reading things on here makes me more jittery than if I had remained ignorant…
Great news to hear quite a few of you have had your third feckin’ FEC. Hope you’ve all put a massive tick next to it on the page where the date and time is listed. I’m hoping my counts will have bobbed up enough for them to go ahead with everything tomorrow. Best get to bed to sleep as that may help. Who knows? All I know for sure is that I know absolutely nothing…
Oh, I know one thing – it’s gonna take me WEEKS to catch up with your posts when I’m finally able to get on-line again!
Best festive wishes x

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Hello All

Well what a lot of posts to read, you have all been busy, so much to take in.

Paula - for the constipation I have bran flakes and plums for breakfast. I did try prunes and apricots but they didn’t work. I have got a carton of prune juice in the cupboard but haven’t tried it yet wasn’t sure if I would like the taste. Perhaps I will try it when I have next chemo. I agree with you about alzheimers being a most horrific disease. My mother has had senile dementia for 8 years and has been in a care home for the last six years. She is more or less bed bound now. It is a terrible illness.

Judes - nice to see you posting again. We had missed you. Sorry that you have been feeling so low. It is so easy to let our darkest thoughts take over. At the moment I seem to get upset / burst into tears over the silliest of things, which I wouldn’t normally do. Re operation scars - I use E45 cream and I also use it on my chest and neck and I am hoping this will help keep my skin moisurised ready for the rads.

LL - pleased to hear that your scans were clear.

Gill - pleased for you that you still have your hair. I have lost all mine but I have noticed that I am starting to get some wisps of grey hair, it seems to be starting to grow back which I am suprised about, I didn’t think that happened yet.

Trudi - hope you get on ok at the hospital with your arm.

Jean - well done on no 3 FEC - halfway now.

Lulu - I sent my christmas cards as usual, but for the ones abroad I sent electronic christmas cards from the Macmillan website and made a donation to Macmillan. If anyone is interested you can also send other occasion cards this way eg. birthday cards. Sorry to hear you are having to take antibiotics, hope your wound clears up soon.

Pleasant 1 - good luck for tomorrow, will be thinking of you.

Hope everyone else is getting on ok. Eventhough I had my 3rd FEC on Monday last week, I am still feeling tired / exhausted at times. I am doing what jobs I can and then rest when I need to.

Well Christmas is nearly upon us. My family will start to arrive tomorrow. All the food is in - my hubby has done all the shopping.

Take care everyone, look after yourselves.

love
A x

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Hi nov chums

I’m writing this on my new iPad, which I’ve been staring at for two weeks not really knowing what to do with. Must try harder.

Thanks for all your well wishes. I’m not a believer as such but I have been getting more in touch with the bigger picture recently, whatever that may be. A friend gave me some Buddhist teachings and meditations to listen to and, after avoiding them for months, when things were getting a bit too bleak at 3am one morning last week, I listened to a talk by a woman called tara brach, called radical acceptance, that really calmed me down. So I have that next to my bed for emergencies. It’s no rocket science, stuff we all know, but somehow just having someone calmly go through it was really helpful.

Daysie I must say I’m vey impressed at 7am shop! Well done. My only contribution to Christmas meal this year will be homemade chocolate brazil nuts and crackers. I didn’t even need to play the cancer card, my friends just decreed it. Lovely people.

Lulu I’m very in favour of hot tubs and jacuzzis. It probably would be best to hire a cottage since we,ll be coming from all over and will want to spend at least one night, and can’t imagine anyone,s home will be big enough for us all! Will have to start proposing dates next year. Very exciting.

Libra lady I’m afraid I’ve also been trawling the bone mets threads etc. seems that quite a few people have recently been diagnosed with secondaries, cant help being aware of the possibility. My mother’s first spread was to her bones, which was really painful and awful. She died of BC 20 years ago. Maybe part of my misery is also all the memories of her death; it really came too early for us to become adult friends and get over all the teenage stuff. So many things I wish I’d done differently, maybe now is the time to really forgive myself.

Sorry folks, this getting a bit morose. Actually I’m feeling quite good. Just a bit contemplative.

My anaemia was back yesterday, hg 9.1, so if I get breathless etc as before I’ll be having another blood transfusion next week. Until then i’ll be eating spinach and liver. Lovely.

Hmm, think I will need some sleep fairies tonight, if anyone could direct my way. Just not vaguely sleepy.

Love to you all jxxx

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i know the sleep deprivation has got me…i woke up at 4am this morning and haven’t gone back to sleep although i was going to try earlier today - my eyes are really heavy but my brain just will not shut down.

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Judes, so sorry to read about your mum, it must be hard to lose a mum at teenage age. That’s the thing when someone close to us dies, there is a lot of unspoken things and sometimes guilt, which is hard to take. Cyber hugs (((Judes)))

I was always a very good sleeper, but I often wake up between 4 and 5 these days and can’t got back to sleep, need the toilet for a start (surprise surprise … not) and that’s me awake.

I got a letter for the bone scan (because of this lesion the CT picked up) for next thursday already, I’m nervous. Judes you’re right there is a lot about secondaries in the forum, but I remind myself that this is so concentrated here, people without secondaries do outnumber the ones with, but if they’re clear for years I guess a lot of people don’t post because they’re getting on with their lifes and don’t want to be reminded of the secondaries possibility.

I’m a bit worried about the bone scan, at the moment I’m in stage 3A as far as i can figure out, once in stage 4 I’m off the road to a possible recovery, this would be a big blow, a new dimension. But I shall see. I wasn’t so worried about the CT scan, but to have bone mets is not so unusual I guesss … anyway.

One more thing, had 2nd FEC yesterday and noticed my affected breast is very red this morning, phoned BCN and she said to keep an eye on it and if it doesn’t improve by tomorrow morning have to go to chemo unit for someone to have a look at it esp because of approaching weekend and holiday. She said it could be a reaction to the chemo or maybe an infection. Anyone else had this? I didn’t have it after the first FEC.

Thanks so much all have a good night and love from Christine xx

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Christi ne -I know Daysie (Paula) had a swollen and red breast recently but it was put down to tumour flare just after her last chemo.

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Hi Christine - with ref to red breast; yes that happened to me after my 1st FEC my breast became very red and swollen and I got occasional needle type stabbing pains. I phoned the bcc helpline and spoke to a nurse on the South Bank and she said it sounded like a tumour flare and wasn’t uncommon. I also went to my chemo unit and saw my oncologist and he examined my boob, he said it could be a number of things, probably just a reaction to the chemo. He suggested I had my doctor check it again a couple of days later to see if he thinks there is an infection. I did that and my doctor said he didn’t think it was an infection. My doctor had seen this happen before with his other patients after chemo and didn’t seem unduly worried, he thought it was the chemo fighting the tumour, in a good way. After about a week it settled down and my boob gradually, day by day, started to return to normal colour, although there is always a very slight tinge of pink there, I just put it down to the chemo doing its job. My boob is a lot softer now, feels like it used to feel before BC diagnosis, I can still feel some lumps, but nowhere near as bad as it was before I started chemo, so I am confident the chemo is doing it’s job. I was mega worried and paniced when it first happened, as it seemed stranged, I convinced myself the chemo wasn’t working, but now my boob feels almost normal - it seems a shame that it will be taken away from me in March probably, but after all the problems it has caused i guess it will be for the best. I would mention the redness to your teleclinic, if you have one, before your next chemo, as they may alter the dosage, although I got exactly the same dose on the 2nd FEC and didn’t experience the same redness, I guess my ‘alien’ reacted with shock and awe at the first charge of the white knights!!

Paula x

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Thanks Paula, the breast has slightly improved I think, but still reddish, so I’ll phone and see what they say. Good to know it can take up to a week for it to get better. This cancer teaches me a lot of patience, eh?

Have a good day everyone and love from Christine xx

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morning

injections again today! i’d forgotten this particular joy. funny how fast we forget. one down, nine to go. it’s supposed to be done first thing so i’ve left it a bit late…

but you know, i’m feeling better today than i have for weeks. maybe it’s St Eroids and maybe there’ll be a crash but whatever, i’m going to enjoy it.

christine my mastectomy area definitely plays up after chemo, all the clinic were worried about was whether it’s an infection, everything else is quite normal i think. but definitely phone them. and thanks, hugs back to you xx

libralady i hope you got some sleep eventually. i did, woke up at about 4.30am but then put the radio on and managed to drift off quite nicely for a while. really enjoyed desert island discs with julian fellows (i’d always suspected he’d be really pompous, but he wasn’t overly so.)

hope everyone else is well today, doing last minute christmas things. i’ve got a bit of shopping but not much.

xxxx

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Hi been out of the system licking my wounds,
Things have been a bit crappy but thats lifr with BC I guess and then stupid actions cause other problems … that said time to move forwards.

I shall take this opportunity to wish you all a happy Christmas (if you can) I for who adores Christmas cannot wait for Christmas 2012! Sorry I’m so negative, that’s just how I feel at the moment.

On a positive note I had my 2nd Chemo on Wed (had trouble with the veins etc but they have given me a slower infusion and some immigrain tabs (spelt wrong) for the horrendous headaches)and I think this has helped, have a mild headache but not like before. Have lost 10lbs and been told to eat high calorie food…told you I would get to the positives!

Glad see you back Judes wish we lived closer I think you and I could have had a good cry together this week, along with many more in the queue…what a roller-coaster this BC lark is. Anyway having said all this all have a wonderful time if you can. I shall be back after Christmas once the family descend I shall not get near a computer! Hope I haven’t depressed you all as I know we are all in the same boat. Take care Shelle xxxxxxxxxxx

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Hello All

Everyone does seem quite down at the moment. I know it’s difficult to stay positive and that bc is always at the back of our minds. But I try to think that at least the cancer has been found and that we are being treated. The chemo I know is not very nice and that we are all suffering side effects but we know we have to go through it to get rid of this ghastly bc.

So as a group we all need to be strong, send positive vibes to each other, hold virtual hands and have lots of cyber hugs.

I won’t be posting again now until after the christmas festivities as the family will start ariving this afternoon but I will be thinking of each and everyone of you and wishing you well.

Be strong, we can beat this together.

Big Hugs being sent to you all.

Merry Xmas and a Happy / Healthy New Year

love
A xx

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aw shelley dear thinking of you, it would be so good to get together and have a proper sob with someone who knows it’s not going to break anything! all i can say is be nice to yourself and don’t feel like you ‘should’ be feeling different. that’s what i’m trying anyway. and today i feel better, tomorrow will have to look after itself.
love love xxx

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Hi Ladies

just popping in to wish you all season’s gretings. still haven’t started chemo yet due to another infection…and that’s before I start… hoping for beg of jan now…

Have a good one and may any se’s be tiny. M

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Hi All

I’ve been sitting in the corner listening to all the chatter, my don’t we chat a lot on here. I had a bit of a temperature on Tuesday and had to go get my bloods checked at the hospital but they were OK, they’ve given me antibiotics because I’ve got a bit of a cough. I’ve been into work the last couple of days which was really nice, now I’m off until the new year. Just thought I would pop in and wish everyone a very merry Christmas, I’m looking forward to TAC4 on Friday 30th so Christmas will be almost normal but I’m giving new year a miss this year!

I hope everyone has a great time and ((hugs)) to all those that are feeling a bit down. Seasons greatings and enjoy as much as you can.

Weme

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Oh Shelle I had my second FEC on wed too, so we’re in the same schedule then :slight_smile:

I phoned the chemo unit and told the nurse re the reddish breast, I have no temp and I think it has improved so she just told me to keep an eye on it and phone NHS 24 if it gets worse or whatever, I hope I don’t need to phone, otherwise I bet there will be some bloke coming round to have a look … what next honestly!

Love from Christine xx

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Hi all back to bad nausea after no 3 because of Xmas phoned chemo unit as unable to drink and eat with it given me another med nozinan tablets has anyone had these

Jean xxx