Day 3 and I am pretty tired today (not got dressed yet!) but have eaten well - toast this morning and some cheese on toast just for lunch. Feel a bit jittery but I think that is with tireness even though I have had great sleep since the FEC on tue...is this normal? Just reading another thread about insomnia due to FEC.
Talking about holidays.....I had negative results from my first FNA and 6 biopsies and stupidly booked a holiday in Ibiza (19th Sept) for a week for me, hubby and son. Then lo and behold had more biopsies done which came back positive. I didn't take out any insurence when I paid for the FULL holiday (bank acct not visa so not covered with that insurance) and wondered what's my chance of going?
I will see my onc on 6th May so cannot ask her until then....just wondered if any one out there has been abroad.
I have 2 FEC and 3 TAX to go and my calculations (if all go at 3 wk cycles) should be finished by end July.
any ionfo will be much appreciated as need a holiday!!!
Just picked up this thread and notice some of you have been asking about me here too as well as other one, (I'm ok I was in Wales, at my caravan on hol I have managed that twice now in between FEC,) when this one was started so missed it all glad most/all of you are doing okish. We gain so much information from each other and so much support, I know some of the info we share is scarey to new people but if it helps you cope... But we must remember that we are all different and our bodies cope differently too.
Louisa you are Eeyore here I like it !!! Think I am POOH!
Someone mentioned heartburn my ONC prescribed Omperazole they were really good and GP prescribed NYSTAN for sore mouth it was brill, my advice is don't suffer get anything they offer you. I was a little silly on 1st and 2nd FEC as did not go to GP but on third have been twice!!! and it is better.
Also advice on tabs take all anti sickness they give you and steriods I do!!! they are there to help you I get the impression if you stop they can't kick back in again.
Good Luck to all
Hi to everyone!
So glad you all seem to be doing well. I am too. In fact, this morning I said to myself, out loud, I can't believe how well I feel! I'm on day 8 after my first FEC and my only real side effects have been heartburn ( a side effect from the steroid tablets I've been told, but that only lasted two days) and hot flushes, which I seem to get about three or four times a day now, but only last about 5 mins. Looking back, I had no side effects from the chemo itself,during the first week, except maybe tiredness.but I was feeling tired at time of dx anyway. I haven't got to chase around after anyone,or do much at all, so that's probably a great help! If I had to drive children to school, etc, it would be a different kettle of fish! I spent a lovely leisurely hour this morning doing my post-op exercises and have added a couple more to try to trim my flabby tummy!! I'm eating really healthily, loads of vegetables and bananas and lentils and beans. BUT I must admit I bought myself some chocolate, and enjoyed that too!! : )
Welcome to all the new ladies. You'll find it such an encouragement talking to each other on here. Of course, if you have any serious concerns or are very low at any time, do phone your breast care nurse or the helpline, they are there to help,too. I've found the onc nurses very supportive too, when I've rung them, for example about the heartburn. So never be afraid to pick up the phone!
Hazel, I had a CT scan and chest Xray, no bone scan. Having an MRI scan of other breast next week. Don't know if that's usual or because I expressed such concern over the other breast, as it has cysts in it, like the first one.Glad I'm going for that. If it shows anything then I've already decided I'd rather have a second mastectomy than shilly-shally about
Although I am aware that doesn't necesarily mean it's all gone. Grrr....horrible thing!
Well. OH is about to dish up another lovely meal, so goodbye for now,and hope everyone sleeps well tonight.
WE WILL SURVIVE! With a little help from these marvellous medicines we can have. Thank God!
Hugs to you all , Ann x
Thanks for your replies to my query about tests you have had in advance of chemo. It is interesting that there seems to be quite a variation in what people have had: bone scan, CT scan, ECG, MRI. As I haven't a history of heart problems, I have decided not to worry about not having had the Echocardiogram (thanks Sophie!). Well it's one less thing to worry about.....
Sorry Paula, Chemo brain ! Last post ? In fact I am ok mentally after 2bnd epi just v tired and drained. i was worse when I got my strength back and got all angry again ! I was hag from hell for a week or so .
Thanks for the info....was feeling strange not to have any side effects as yet (26 hours after administration) even took the dog for a 45 min walk today and still felt fine.
Still keeping up with the anti sickness drug as to be safe than sorry. I have eaten a little more today and just had a bag of sweet chilli crisps!
Speak to you soon
Hope you are all well and keeping up.
Sophie - so so glad you got the good news you were waiting for with your scan results, I hav'nt been offered any scans as yet?
Lynn - pleased to here you are coping well
Hazel - I had a heart scan (EEG) before starting my chemo, they said it was routine, so you may need to query that with your oncology dept.
Polly - I was lucky and didi'nt suffer from nausea or sickness, but still took the drugs just incase, I'd rather be safe than sorry!
Anita - well done you that's one down!! I found days 4 - 6 the worst ( day 1 being the day the drugs are administered)
Rachy - good to hear from you, thought you'd gone into hiding did you read my last post?
Hope all those I've missed are doing ok, take care
Love and hugs
Had a good nights sleep after 1st FEC - a couple of short 'awakenings' but soon got back over. Took my bucket up as wasn't sure about nanusea/sickness but haven't had to use it (and hopefully won't need it!).
Polly - yes I did take some of the additional anti sickness drugs yersterday as I had read somewhere it is better to take them to be safe than sorry. I took another 1 before bed.
I managed to have some dry toast this morning as I have to take 4 dexamethasone each morning with food for 3 days. I also took 2 of the anti sickness to be sure!. I am usually on omeprazole 1 a day for an existing tummy condition but haven't taken that yet as don't feel the need. Going to try and eat more today.
Sophie - glad you got the good news re the scans. I haven't been offered any scans as yet so not sure if age/type of BC has any bearing??
I wish all the ladies on this site good look in their treatment and recovery and keep up the good news and positiveness - it sure does make this journey more manageable.
Love to you all
Glad to hear everyone is coping OK.
Anita - pleased to hear that your chemo went well today. Are you taking anti-sickness drugs? After taking the initial prescribed anti-sickness drugs I didn't take the extra anti-sickness tablets they gave me and got indigestion which put me off eating. I realised after that I should have taken the drugs to settle my stomach and then would have eaten more - a lesson for next time - it is all a learning curve!
Rachy - glad that all is well with you and wishing you all the best for the next few days - take things easy!
Lyn - you are managing so well! Pleased to hear that all is going OK.
Hazel - I didn't have an ECG but it was mentioned. I said I'd had one last summer and that was fine so the doctor didn't send me for one. I also haven't had any scans which the chemo nurse seemed surprised about - I think I will mention it next time I see the onc although he did say that the chemo was a precaution in case there were some microscopic cells floating about so perhaps he doesn't think it necessary.
Sophie - so pleased for you that your scans were clear - what a relief!
Hope everyone else is still OK. I've had a good day today - my thrush is clearing up at last and I've had lots more energy. I've even been for a walk around the block in the lovely sunshine. I'm now looking forward to the good days before the next chemo and hope to make the most of them!
Love to all and cyber hugs to anyone who is having a rough time.
Good evening ladies,
Saw my Onc today, and got some good news.MRI and CT scan all clear. I am sol relieved. I have had a big smile on my face all day.
I was also told that the first chemo is usually the start of a pattern. As I have been well, I have high hope that apart from tiredeness the rest of chemo will be fine.
The onc also told me that Tax can be harder than FEC, so I am less anxious about switching to FEC.
You get regular heart scans for Herceptin. A ECG, may be done before chemo if you have history of heart trouble. ( I think).
Anita, keep looking after yourself.
Still feeling ok up to now but as I have only had 2 slices of toast in approx 30 hours (hatch shut due to anxiety) I may be doing myself no favours by not eating...but feel that if I eat I could be sick....
I am definitely going for the portacath and welcome your comments on recommending it. I had to put my hand in a bucket of warm water today for the nurse to even find a vein!! and with only having one arm to go at was quite concerned about collapsing veins etc.
speak to you all soon as need a lie down
Hi Anita, glad your first FEC went ok - I had first Epi last Friday and the pink wee only lasted a few hours, drinking lots helps to flush it all through, and the chemo nurse said plenty of fluids help minimise the side effects too. I had a BardPort (portacath) inserted in my chest as my veins aren't great and I can't recommend it highly enough. Mine was done with local anaesthetic under 'conscious sedation', not a general anaesthetic but I was unaware of anything being done, and it certainly made administration of the chemo a breeze. I'm dotting about between hospitals too, though not quite such a wide radius - SLN biopsy at one BUPA hospital, surgery at the big hospital, chemo at a different BUPA unit and back to the big hosp for rads later on. Still we get to know a lot of receptionists! All the best to you. Lyn xx
Just had my 1st FEC administered today @ 2.00pm - so far so good, just got red wee!!
Making sure that I am drinking loads of fluids. Have been advised to get a port something or other inserted as my veins are not good. My onc is away in Berlin for a week so I may have to have 2nd one done without a port. Have to go to another hospital 10 miles away for that......chemo is done 15 miles away in Burnley and port and rads at Preston.......will be the most travelled cancer patient in the NW! We have a 'super' hospital 2 miles away from where I live in Blackburn but cannot offer me any treatment there???!!!
Anyhow will keep in touch and let you all know how I get on.
thanks for all the support
Hello ladies, Hope you are enjoying the sunshine. i am ! I am ok at the mo after my 2nd epi but only the second day so wil wait and see. Not working is certainly helping me mentally. Thanks polly for asking after me. And welcome to all the new ladies on the thread.
Thanks for the warm welcome. I live in Finland - Anglo-Australian - and for the first time in 20 years I've felt ashamed I've not mastered the language better. I'm having a total immersion course at present as a lot of scientists aren't multi-lingual, unlike almost everyone else here. And why should they be? I'm not. So the discussions in English have been a comfort and a godsend. What would I have done before the internet?
I've been following this thread and others and went into see my oncologist well-prepared with lists of questions. I got a little pat on the back of approval - silly the things that give one a bit of a lift. He says that most people are so floored to be told they will be having chemo that they go blank. I suggested that if they told us in advance it might be easier. No mention of chemo was made to me, but I could tell, from reading here, that it was almost certain. He seemed to feel that it was better for patients to only deal with one thing at a time - which I agree with, but not to the extent of complete absence of forewarning.
However, that's the only mild complaint I might make about attention and treatment in this marvellous country. The staff is wonderful, treatment is apparently cutting edge and they even pay for wigs and the use of one's own car to get to the hospital.
I'm the only person here who is starting chemo with 3 x tax then going onto 3 x fec. Anyone got any ideas why this might be? From what people have said, many find the tax harder than the fec, so in a way that is a comfort. Though everyone is different of course.
This week I had blood tests, bone scan and CT scan - these make me nervous because, of course, they involve more of the dreadful waiting, much worse than anything else IMO. The onc will call on 22nd & if there are no other established mets (fingers crossed), chemo starts 24th. The CT was horrid. I had an ominous little brown bottle I had to mix with water the night before - & it WOULD be anis-flavoured, which I find disgusting. As the husband and son were on a hockey cruise I was alone and as someone has said here - we develop a public sense of humour, which deserted me as I looked at this pint of pernod (without the jolly after effects). Black hole time, which filled up again as soon as I got the crap down. Then the CT itself is a bit frightening with the foul hot rush of the chemical they use to highlight the organs. Also quickly over. And then, Hazel, I too had an ECG - normal practice here apparently, & I'm a normally healthy 50-year old (oh yeah, right, if it wasn't for the damn cancer...)
Love and courage to all of you who are a bit further down the road. I applaud you all, and get courage myself from the way you deal with it - specially those with the young children. I take my hat off to you (while I still can & before it starts to hide a bald pate).
Many thanks for the welcome to the thread messages. Much appreciated.
I've got a question:
I was contacted by a bc researcher about taking part in a research trial. In the course of the conversation she expressed the opinion that it was usual for someone starting Chemo to have an echocardiogram test done before the first Chemo. My Oncologist hasn't suggested that for me and I start chemo today week. Has anyone else had/not had this test before starting chemo??
I'm 58 years old, generally quite healthy (if it wasn't for the damn cancer...).
Best wishes to all on the chemo track
Hi all, hope most of you had sunshine today and missed the hailstorm that battered us here! I managed to get the dog out between showers, luckily - he's a wimp about rain and wind, not a typical terrier!
I stretched out the steroids and ondansetron to take two each on Saturday, the day after Epi, then one each yesterday and today, just domperidone from now on. Seems ok and I've been perfectly awake, did the school run, no nausea and no bad taste - I've been lucky. Drinking lots of water, juice and smoothies, a bit of heartburn from so much fruit but Gaviscon does the trick, and Senokot got the sluggish bowels going. Making 'Go Cake' from the Top Tips thread tomorrow! Worst thing is getting up in the night for the loo as I'm guzzling so much water, but shouldn't complain - it's early days and I'm waiting to crash before long. Chemo nurse said drinking lots during the injection helps, and was right.
Love to you all, hope everyone has a good night. Lyn xx
Welcome Hazel, M-L and Anita! I know you would prefer not to be here but as you can see we are a lovely group of ladies who give lots of support to each other. We understand the rollercoaster of emotions and fears we all share and together we can get each other through the next few weeks of chemo. Good luck tomorrow Anita! I've had a rough few days after my first chemo (TAC) but I've got through it and I'm the biggest wimp there is! - somehow we all find hidden strength to get us through it.
Sukes - hope all is well with you and you are managing to cope with the fatigue.
Ann and Lyn - are you OK? no posts today I see. Lyn, did you sort out lifts for your daughter or were you well enough today to pick her up? Thinking of you both as you are slightly behind me so I know you are both probably still feeling rough. I am day 8 today and feeling better - still very tired - I can do things for about half an hour then I need to lie on the sofa again! Also got tablets for oral thrush - my mouth is sore but feeling a bit better this evening - I may be able to eat something other than mush tomorrow!!
Paula - hope you are feeling better from your sinus infection. Are you out and about again now? I've been as far as the washing line but haven't gone anywhere else because of the fatigue factor. Perhaps you younger ladies have more energy than us middle-aged 50 year olds!!
Rachy - we haven't heard from you for a while - hope you are OK?
Sophie - wishing you the very best for tomorrow for the scan results - will be thinking of you!
Naz, Louise and Sarah - hope you are all keeping well!
Goodnight ladies and sleep well!
Love to all
I will be in touch in the next few days to let you all know how I am doing.
great to get all these hugs!
Thank you Sophie
This site is definitely keeping me sane...........and knowing that there are people out there having done it and giving good advice and experiences makes it easier.
Like you I'm also triple negative, dx jan 2nd started chemo April 3rd (3 FEC 3 TAX), as you've probably read so far it is difficult and you do have bad days, but it is DOABLE, hold on for the good when the days are bad, it the lesser of the two evils is what I tell myself.
I'm 35 (34 when dx) and have two children who are almost 3 and 6 and a fab hubbie so that's my will to fit.
I'll be thinking about you, stay in touch
love Paula xx
Good luck Anita,
I will be thinking of you. You will find that it is not as bad as we all fear it is going to be.But just make sure you rest, drink plenty afterwards.
Keep us informed on how you are getting on when you feel up to it. My personal experience involved tiredness only and only for a couple of days, no nausea no vomitting.
You will get through it.
I am starting chemo tomorrow and am finding that the jitters have set in now. I will be on FEC then TAX as I have triple neg type. No hormone treatment for me.
I sure need some 'cyber hugs'............can anyone oblige???
I am back after four days with my mum. She kept my mind off BC. We went walking everyday between showers. It was brilliant. She brought scarves for my daughters and I (without even thinking I will be using them for my head rather than my neck). They are absolutely brilliant. It is a bit like large Honeycomb, the thread that makes the little square is elasticated, so it fits beautifully and tightly to the head. I will be stealing my daughter's
I have been doing really well during my second week. Tomorrow I have my appointment with the Onc and will get the results of my CT and MRI scan. I am dreading it. After that I will have my permanent prosthesis fitted, which will then mean a trip to the shops to get mastectomy bras.
Welcome to our little chat group. We are here to help each other in a way none of our families or friends can.
I am 44 diagnosed early January, after surgery to remove what I was told was a benign tumour. Scan and mammogram were clear. 3 week later I had a mastectomy.
They found a 10cm tumour. It is lobular 7/7 nodes involves HER+, which means I will go on having Herceptin after chemo. Chemo will be 3 FEC ( 1 down, 2 to go) and 3 tax. To top it up, I will also have radiotherapy.
3 Kids and OH who have been brilliant.
Your comment on survival is so true. Everyone keep saying how courageous bla bla bla. I always answer that I have no choice. But your right it is our survival instict that kicks in.
I have decided to ignore all the threads on Tax until the week before I am due to start it. I have been fine so far, so I hope the next two FEC will be similar. I have plenty of time to worry about it nearer to the time.
Lots of love to everyone.
My onc gave me lansoprazole for heart burn one tab a day - -works wonders
yes I've bought some gaviscon today to see me through. I had it when pregnant, too. The pain is annoying, but seems to be improving now.
Welcome Hazel and Emmelle, so sorry you've had to join us on here, but as the others have said you will find heaps of help and support on here. It's good to communicate with others who are going through similar experiences.
I'm 35 (34 when dx on Jan 2nd), married with two children aged almost 3 and 6 (Joe and Kate). I discovered a lump on 15th Dec and a triple test dx 13mm invasive ductal carcinoma, no lymph node involvement or hormone or protein so I'm therefore known as triple negative. I had a lumpectomy and node clearance on Jan 10th and started chemo on 3rd April - I'm having 3 FEC 3 TAX.
My first session was quite scary but very do-able although I hav'nt been well since as I developed a sinus infection which floored me. I have good support from family and friends so I manage with my kids on my good days and shout for help on the bad ones!!
The whole journey so far for me has been an emotional rollercoaster. I'm also a district nurse so took this quite hard as I'd just lost a patient before christmas to BC!!
But as you will learn everyone is different and WE COME THROUGH THIS, its bloody tough but you can do it too.
Sukes - so sorry to hear you've been a bit flat, stick in chuck and keep ya chin up.
Ann - I think you can take Gaviscon for heart burn, I used it alot when I was pregnant as it works wonders, take care.
All my love everyone
Sorry to hear you've not been good since tax. Hopefully it will ease off as each day goes by. I've read on another thread that piriton can be prescribed to reduce the swollen tongue, so it might be worth asking tomorrow. I'm going to ask before i have tax later in year because I'm worried i might have a strong reaction to it.
Hope you sleep well tonight, and recover some of your energy,sweetheart. (((HUG)))
Hello,Hazel and Emmelle,
it's lovely to welcome you to the place all of us would rather not be, but we are here and we will help and support each other through this year. We'll all have" bad" days but, hopefully, the good will outweigh the bad.And maybe find somethings to laugh about! Please God! You do develop a sense of humour, in public anyway! Good thing.
I was diagnosed on 20th feb, two days after my 52nd birthday, and had a mastectomy two weeks later.(stage2,invasive lobular,4/13 nodes involved.) It's such a shock, isn't it? And from then on it's like being on a rollercoaster ride,with no opportunity to get off for a breather!!
Personally, I've found now it's best to focus only on each immediate stage.....because I have been allowing myself to worry about other things further down the line, and I must stop it! We need to be kind to ourselves.A day at a time!
I also found I was more relaxed immediately after having first chemo, ....i was still standing, and in fact FELT GOOD because the steroids give you a buzz for three days!! No sickness, just a headache and fuzzy brain. So, ladies i would say please don't worry about actually having the chemo. Just get as ready as you can at home for the second week when you may get hit with tiredness and annoying symptoms. Check out the thread Top Tips, for ideas to help.
I've started suffering with bad heartburn since yesterday, ( it would be the weekend!), so will need to speak to my onc nurse tomorrow and get something for it. Apparently peppermint tea is a good remedy.But i expect i'll need something stronger! Wonder what causes that?
I may be hibernating for a few days as i def feel more tired today than before. Perhaps I'll sleep better at night! That would be a bonus! I certainly slept well this afternoon for an hour and a half. I'm turning into a doormouse! lol
My two daughters and husband have been great,and i think in many respects this must be easier for us more mature women than the young women with little children. That must be so exhausting,trying to keep some semblence of normality going for them. Paula ,my heart goes out to you,as you know.Glad you are feeling better this week.
Hope to hear from everyone else soon.
Thinking of you everyday,
love , Ann x
sorry for the delay in not getting in touch. Had the tax tuesday and was totally floored by friday. The pain aches were OMG Horriffic to put the least. Have picked up today but energy levels feel really low. Haven't been sick but my tongue is well far to big for my mouth.
I would also like to appologie for my lack of personal responses it just hard with chemo and 3 little ones. i have told hubby I can't do school run tomorrow AM as I as still full of fatigue. I keep on counting the days till all this will be over. I'm so glad your okay polly and lyn and anyone and everyone else I've missed.
Take care and speak to you all soon.
Hello Hazel and Emmelle, welcome to the forums and I know you will find this a place of the most incredible support, kindness, information and a true lifeline as we go through this BC journey together. I wish you both the smoothest possible ride through your chemo - you're right, the surgery seems the easy part when you're waiting to deal with something so totally unimaginable. I'm 51, had mast/axillary clearance and immediate DIEP on 1 March, seems a blur since 1st mammo in Jan, the recall, biopsies, our puppy was killed on the road the week of my diagnosis and I've hardly even taken that in. Had 1st chemo, Epi-CMF, on Friday. Kids 21, 19 and 16 amazing and my ex, still my best friend, is a rock - this year is a write-off, roll on 2009! I hope, too, that 'attitude' helps - but a lifetime of sensible eating, not smoking or drinking, saving the planet and forgiving too quickly has clearly caught up with me! Possibly 30 years on the pill was an error of judgement, but my surgeon won't even confirm that, so I'm left wondering... still, onward and upward!
And I add my plea to Hazel's, as I start on the 24th with the same programme as she does, though I think the Tax comes first. I can see that women get a lot of support from their 'peer group' as they go through chemo and it would be great to be part of that. I'm 50 & was diagnosed on Valentine's Day - ironic - IDC operated as a lumpectomy on 24th Feb: 1.8 cm & oestrogen/progesterone receptive (that part's a bit blurred, too much info to process), lymph node involvement was 4 out of 18. First chemo on 24th and unfortunately the spouse has to go to Argentina to manage a film shoot for three weeks the next day. Never mind - it might be for the best as 16-year-old son is somehow more adult than his dad, and much more understanding. We'll work out a modus operandi that the OH can be slotted into second time round.
Like so many here, I've always been healthy, tough and full of beans. Friends tell me constantly that I 'have the right attitude to beat this' - and I want to say, 'yeah? then why did I get it in the first place?' Ah well, y'gotta laugh. I too go for the comedy therapy approach & welcome anything that makes me roar. One film that I've enjoyed in the past and watched again recently was 'Groundhog Day' - a bit soppy, but a very funny central thesis (and no having to visit someone else's bedroom at the wrong moment). I like the Marx brothers - but in smallish doses - OH has bought all the Fawlty Towers, Monty Python films and series, and things like Brideshead Revisited which I haven't seen for years. I'm trying not to start any of these until I start chemo - but it's hard.
I had to laugh about your husband with the telly, Hazel - honestly! I can so clearly see my own doing exactly the same thing - only with him it's ice hockey (Finland, you know).
Cheers all - strength and humour, M-L
I feel like I know some of you already as I have been browsing various threads for a while, especially this one and recognise some of you as having a lot in common with me. This is my first time posting though. I’m 58 and am about to start Chemotherapy on 22nd April. The plan is 3 FEC and 3 Tax. I’ll hopefully know more about what is in store after an Onc appointment on Monday. I would really appreciate being able to compare notes with you all as I go along so hope you will allow me to join in.
Breast cancer has dominated my 2008. I had a Wide Local Excision in early January, a further one in early Feb after which my diagnosis evolved from precancer to Invasive Lobular Cancer. At the end of March I had a mastectomy and node clearance with immediate reconstruction (DIEP flap). I’ve been recovering well but am quite apprehensive now about the chemo. I’d exoerienced surgery before but chemo is such an unknown. I’m prone to migraine which often leads me to feel nauseous. I had a lot of nausea too when I was pregnant.
I liked the idea of the comedy therapy and am planning to check out Gavin and Stacy. My OH bought a second TV a few days ago on the pretext that I could relax in the living room and have my own choice of programme while I’m more housebound than usual. Needless to say he is now watching the football on it while my 17 year old son is on the other TV upstairs!
Hoping to get to know you all better
I wonder about stretching the steroids out so instead of taking the last two at 8am and 8pm tomorrow, I take one at lunchtime and one on Monday morning, then I can get lifts for her the rest of the week. I have the stronger anti-sickness tabs, ondansetron, until tomorrow night too and can't remember if it's essential to take these together with the steroids - it would be a Sunday, wouldn't it, so ringing the chemo unit means getting someone to call me back? Lyn xx
Hope I've not scared you! Perhaps you won't get the side effects I've had as you are having a different chemo. Based on my experience I would say it would be best to arrange for your daughter to be picked up Monday and Tuesday and then see how you go. I would certainly not have been able to have done it days 3, 4 & 5 and am still very tired today so wouldn't have liked to have done it today either. What does everyone else think?
Sophie - so pleased to read about your plans for race for life, my sister and mum are taking part too. I might join them depending on how things go. I hope you've had agreat time with your mum and enjoyed somme valuable quality time.
Lyn - good to hear everything went well with your portacath and your first session on Epi has been ok so far. How's your son I do hope he is on the mend
Naz and Sarah - how are you not heard from you in a while, take care - sending hugs
Louise - I've been looking into reiki and massage, the district nurses that I work with have referred me to them, apparently it goes you good!! I'll try anything if it helps me through those bad days.
Ann - so so pleased your first chemo was'nt too bad and went all according to plan, just take it easy and try to rest when ever possible its the lack of sleep after steroids that I found frustrating.
Polly - good to hear your chemo went well too, and I'm so pleased things are going well with your daughter. I found pregnancy hard, similar symptoms to chemo, but a great reward at the end!!
Naz and Sarah - How r u?
Rachy - Hope your keeping better and your spirts have lifted, thinking about you.
Take care everyone, love and hugs - of to bath kids and then maybe attempt a glass of wine HIC!!
love Paula xx
Good to hear from you Polly, and what exciting news about your grandson to be! Something to focus on, you must all be so thrilled. Sorry to hear about the 'crash' when steroids finished, I'm dreading this. I'd asked for chemo to be on Fridays, so I had people around for the first couple of days, thinking they'd be the worst. I feel fine now though, finish steroids tomorrow night, and have the school run every afternoon this week, I can get my daughter taken in but I have to drive her home (13 mile round trip). Think I've planned this all wrong! Perhaps the answer is to go to bed at 11am and set the alarm for 2.15 so I can just get up, dress and go. Could you not have driven, was it too exhausting? I may need to book taxis but they take so long to get out of town to the villages the time isn't reliable. Sukes, was wondering about you... keep in touch... Lyn xx
Thank goodness! I'm back in the land of the living after a rough few days. Pleased to hear that you are both OK, Lyn and Ann, after your first chemos.
I am having Tax with AC and the crash came on Weds (day 3) after I finished the steroids. I obviously finished my anti-sickness tablets too soon as I have had stomach problems but have only been sick once - back on the anti-sickness now and feeling much brighter - a lesson learnt for next time!! Today (day 6) is the first day I've spent any time away from the settee apart from to the kitchen, bathroom and to my bed for all the necessaries and I had the first good night's sleep last night for a couple of weeks! It is interesting to see what different chemos we're having and also what different drugs we are given afterwards. I am having daily Granocyte injections for 7 days (starting day 4) to boost my immune system and also started 10 days of antibiotics yesterday (days 5-14).
Yes, I too am getting ready for the hair loss. I have been given a bag of scarves by someone who recently finished their chemo (and was glad to be rid of them!!) There was a buff among them and it is so comfy - I went on the website and I also bought a pink one, Lyn - will think of you when I am wearing it! My wig is ready - I got my son to buy a wig brush and some other bits for it and when I went to pay him for them, he said, "have them in lieu of flowers Mum" ( well at least they are practical!!).
As well as feeling better I have had another boost today. My daughter went for a scan at lunch time and rang to tell me that all was well with the baby and that in 3 months time ( due 24th July) I will have a grandson!! I can start looking at all those lovely little boys clothes now – it is soooooo exciting!!
Ladies, hope you are all keeping as well as possible. Sukes, I haven't heard from you for a while - hope you are on the up after your tax on Tuesday - you are a day behind me so hope you aren't feeling too rough and are starting to feel better. I think everyone else, apart from Lyn and Ann, are on their second week so hopefully feeling more normal again - thinking of you all!
Love and hugs!
I love manuka honey and have it every morning on toast, as well as cereal or porridge. The exercises aren't going well, saw the physio about cording the day before I had the portacath inserted, see her again in a couple of weeks and must knuckle down again. One of the most irritating things is not being able to reach forward and across to pull the passenger door shut, nor to throw crusts out of the back door! Well, I can do it, but it pulls in the armpit. Massaging lots of E45 into the arm and armpit before exercising helps. Ann, the problem with posts is that my computer won't send more than about 100 characters, it just 'dies'. I think our broadband is too slow as we're so far from the exchange, we only have a 512kb connection and most providers think 1Mb or 2Mb are prehistorically slow nowadays! That's what we get for rural bliss!
My hubby was a great Pink Floyd fan in his youth,and my youngest daughter quite likes them.
glad you were able to go out and enjoy yourself! Wonderful!
My husband has come back from shopping with an armful of dvd's from a charity shop. Red Dwarf, Mr Bean,couple of others. Videos are really cheap now.
I did think I'd be going for a siesta, but I've stayed on here reading through some threads, especially an extremely long one on Taxotere which has both reassured me and frightened me at the same time!! I'll just have to pray hard that I don't get an infection at any point. A bit easier maybe without young children in the house? I may ask for Piriton just in case i get that funny swollen tongue. I do tend to react to things,that's why i'm worried about it.Better talk to onc first I think.
By the way,when you reach the bottom of the coment box, Lyn,just carry on hitting the return key and you'll find you can continue typing even though side bar shows you've reached the bottom. hope that helps! maybe that's not the problem?
I've been forgetting to take my manuka honey, and it's quite hard to remember to do your exercises, I've found.
Hope you continue to keep "well". Hope all the other ladies ar fairing well?
My post crossed with yours! I was told Epi-CMF, or I could have chosen FEC-Taxotere, but I was so worried about being floored by side effects during my daughter's GCSEs they recommended the former as it is supposed to have less severe effects. We'll see, so far so good. The wig and scarves sound great, well done. I've ordered a Â£25 wig from eBay and if I think I can face wearing one, I'll go for a decent one at the salon in town. My 16 year old did a great job of layering my hair into a shoulder length style, and will take a bit more off next week. I'm rather hairdresser-phobic!
BTW Ann, my legs and hips are the only bits unchanged since my teens so when it warms up I'll be back in shorts, not the dungaree ones though! Shame about my middle, which bears no resemblance to the teenage me. Looking forward to seeing the new Stones film next week, if not felled by chemo fatigue. I saw the brilliant tribute band Australian Pink Floyd earlier this week, in an audience largely in their 50s and 60s, though a fair few youngsters knew all the words too!
Hi Ann, I wish my computer could send long posts. How are you now? Polly and Paula, how are you too? I had Epi yesterday into the BardPort (portacath) in my chest, brilliant, didn't feel a thing. Tried cold cap, neoprene type, not a plug-in helmet, and despite my girls cutting my hair to shoulder length it's still too thick because it barely felt cold, so it can't have chilled the scalp. Wigs to be explored. Appt 11.30, got out about 3pm. I feel TOTALLY normal, except bowels haven't woken up today... not too worried but will take Senokot later. I have anti sickness Ondansetron for 2 days, and suppositories if needed, plus Domperidone 4 times daily until Tues, then reducing. Steroids Dexamethasone for 2 days, antibiotics and antifungal tabs to take from day 8, pre-meds and Emla to use before next time, bloods the day before - haemoglobin 11.9 this time, whites 5.9, platelets 2.2, neutrophils 3.2. Love and hugs to you all, keep in touch. Lyn xxx
Hope you are all doing ok.
glad to hear your first epi session went well. Lyn. (saw your post on the other thread ). Aren't the nurses just great! yes, Lyn I would use some Senokot tonight. I had a bit of a struggle going to the loo yesterday,so was glad to take some last night. drink plenty, too.
I wonder what the criteria are for choosing which drugs they give you? A few ladies only have Epi rather than the cocktail of three. must be the type of ca. I suppose. Any idea?
I've been for my wig fitting on friday. Chose a lovely short style called Rosie, which makes me look 10 years younger,and quite pretty. I was well pleased and came back with a smile! I've had my hair cut shorter today, going to do it in two or three stages depending on how quickly it starts to fall out. I also ordered a scarf which is denim with long ties and long hair attached at back! I feel like I'm 25 again with it on, and it will be cooler in the summer if I want to wear some hair when out shopping, or whatever. I didn't expect to buy something like that, but it's only once in a life time and my daughters may get some fun out of it later!! ( or OH, he's a bit of a comedian at times! )
Maybe catch up with you later this evening?
Hope I can get some sleep,feel wide awake just now. Thinking of you Lyn. It's such a relief to get first one done,be kind to yourself that first evening, You'll feel a bit strange but it's not too bad.Paracetamol helped me to sleep.Eat light diet.
How are you all sleeping? I've semi-moved into my daughter's bedroom for now,as she is at uni and when I'm awake in the night i can put the light on and read for however long it takes to feel sleepy again. My OH doesn't seem to mind, as he doesn't sleep very well himself at the best of times! ( and he snores! )
I don't know about my idea of putting fake tan on my face - I think it's making me look jaundiced!!! Not the effect I had in mind,lol.
Managed quite a good plate of food at teatime, the fish tasted fine, but the potatoes and broccolli did not have their usual flavour. Had to smother them in sauce! I think it's sweet things that are beginning to taste funny. I'll persevere with the things i know are good for me, though. I'm taking ImmuneACE supplement to help. How are you all coping food-wise?
My mum said to me she thinks I am so brave. But I said, well there's no choice really, you have an inbuilt instinct to survive and you weigh up the pros and cons and get on with it, one day at a time. I can think of far worse situations to be in, with no hope for the future. Many poor folk in the world have to watch their children die of disease or starvation.How awful must that be? I can hardly bear to think about it. So, we are very blessed and must remember that. It helps me to keep my eyes on the bigger picture,rather than my own little world. Do you agree? There is much good we can do in the world with our time and energy! When we've got it back after this!! I would like to be able to join in the race for life next year,too. I can walk quite quickly - don't know about running!
My thoughts and prayers are with you all. There's a proverb that says "a cheerful heart is good medicine". So let's make time to do those things we really enjoy and not feel guilty. And,no, I don't mean drinking a whole bottle of red wine! Enjoy the spring flowers,the sunshine,the birdsong. It's all free! And dance to your favourite music,when no-one is looking! I'm learning to loosen up on that score! Thinking back to my teenage years when we used to go to a disco on a friday evening and dance to tracks like Brown Sugar by the Rolling Stones! Good times! Very short skirts and hot pants!
He he! Couldn't wear them now,lol. Not even for a dare. Sorry, I'm rabbiting again. But,do you any happy memories of teenage years,ladies? Or, funny tales to tell of the fashions we used to wear? Paula, you'll be amazed at how some of them are back in fashion! I get a feeling they store them away in a huge warehouse somehere then bring them out again 20 years later! ( I'll let you in on a secret...my hotpants were bright orange!! hehe.I only wore them once! )
Love and hugs to you all. You are all special.
Ann ( still not feeling sleepy ) xxxxxxx
Sorry, everyone, I know you have asked after me - and others - lately - and that I should really have replied but I'm only just returning from wherever it is that I have been. I do hope that everyone who has started is managing and that those who are about to start are not getting too agitated about it. I've been on the forum on and off all day today - and added one or two posts periodically - but I've just written a lengthy post on one of the other threads ("Starting chemo in coventry" - sounds a little exclusive - but do join in - the more the better!) - although I didn't really say very much - so I won't go on now.
Just want you all to know that I've not forgotten you - and that I'm wishing you all the very best.
I'll write again when I feel I've got something worthwhile to say - might take some time!
Lots of love, Naz
My Mum has been over today, it is a long trip involving bus, train and taxi. Bless her, it was lovely to see her. I quite fancy a night on the tiles but my husband is still suffering from the after effects of a yukky virus so I will wait till Friday night and emotionally blackmail him by reminding him it's the weekend lol. Going out to lunch with a dear friend tomorrow as well. The good days in a cycle are REALLY good!
Glad you have come through the worst, Paula. You will probably be OK for the rest of the cycle now. Write down what happened on a day to day basis and you will be prepared for next time-though in general I have to day my first one was the worst and numbers 2 and 3 not so bad. My really worst time was days 4-7 when I just felt so depressed and hopeless. I have decided to get some creative projects to do for the next time ie to take my mind off myself. Also I had an awful smell in my nose, so I am getting some strong aromatherapy oils.
Ann Well done on number one and I hope you are continuing not too bad, take good care. The day after you finish the steroids might be harder for you so take it easy.
Lyn Good luck for tomorrow, Ann is right, they do it at you pace and please remember we are all here rooting for you (and we are all proof that it is do-able)
Polly how have things been today? Know it is Day 3 for you, hope you are coping Ok honey.
Sukes my heart goes out to you on Taxotere. One done means one less to do!!!! ((HUG))
Rachy Hope you’re feeling a bit brighter. Sophie have a great time with your Mum. How you doing Naz and Sarah?
Love to all
Paula SO glad you are back in land of the living. Poor you, you've had a very rough time indeed. Things can only get better from now on! Get some rest if you can, I suppose it's difficult. Hope that doesn't happen again.
Hope everyone is bearing up, all things considered, and not looking too far ahead. The sunshine is great!
Lyn, thinking of you for tomorrow. What time is your appointment? Is someone going with you? I was there 2 hours total, beacause they ran it in slowly to protect my vein.Took a bottle of water and mints. Had a sandwich and cup of tea afterwards and felt fine, just slightly drunk! I had buzz from the steroids for while when i got home, then it wore off and i felt drowsy, so went to bed rest of day and kept really warm ( too warm?) in bed. I tend to get the shivers when not feeling well, so that helped me stay relaxed. had a wheatbag and a hotwater bottle, but my forehead still felt cold! And i looked like death warmed up! No bad taste so far.Had a little trouble with fluid retention,but nurse said should settle.
Hope it goes aswell for you! The nurse is sat at your side the whole time, as she put the "medicines" in carefully, and ask you if you're ok every 5 mins.If you feel a little dizzy they stop. I slept quite well, no nausea, just a headache,but not too bad.Managed to eat crackers, yogurt, then toast and jam at 11pm. Hope I continue to feel this good!!
I'm goin for my wig fitting tomorrow,if I feel well enough, and a friend is coming to cut my hair shorter on Saturday, then again when it starts to fall out.I didn't use the cold cap. I've heard it gives you a headache, and a lady has said your hair grows back thicker without it. So, I decided not to bother! And yes Lyn, it is certainly do-able, don't worry. Especially having the "medicines",as I prefer to call them ( doesn't sound scary!). Although I am a bit worried about the Taxotere.
Enjoy your day, may come back on here later. Off to have a little home-made soup,courtesy of my lovely hubbie!
Well done Ann, I'm glad you were able to update us so soon! The scarves sound lovely, are they squares that you can tie as you wish? I got my Buffs from eBay shops, there are so many different patterns and they're really versatile, there's a video on their website of ways to wear them. Still haven't cut my hair, must do tomorrow or no point trying the cold cap, did you use one? Hope you get a decent sleep despite the steroids. Does everyone get the same kind to start?
I'm quite alarmed that you all sound so BUSY, for goodness' sake take things easy!! Mind you, I am incredibly impressed, you're so inspiring. I have an urge to run screaming as far as I can from the hospital so when Friday comes NOBODY knows where to find me... but knowing you are all coping gives me confidence that it really is do-able. Lyn xxx
I am feeling a bit like an hermit. I haven't been out since my chemo 10 days ago. Everytime I step out, I ran in because I am too cold. Well tomorrow I will be going in the office for a couple of hours. I need to see something different. I just can't wait to be able to do a bit of gardening or read on my deck chair...
Did you start you steroid the night before your chemo. I was told to start on the morning and then not to take my second dose after 4PM. Just to be sure, I set my cloc at 2 PM everyday and took it then. I did not have fantastic nights, but at least I slept most of them. This being said, I am a very heavy sleeper.
You sound really upbeat, this is great. Hang on and don't think about that bucket in the spare room. Take it easy, drink plenty and rest.
Paula, Hang on darling, you will get through it like the rest of us.
Dear, My daughter just walked in asked "What's for dinner"; I was about to say it will be ready in 10 minutes, when I realised that I had switched the oven on, and did not put to food in.... Dinner delayed for 45 minutes...(Chemo brain).
I better get this sorted.
I won't be around for the next few days as my mum will be over for a long week end. So if I don't have time to check on you. Wrap up, keep warm and look after yourselves.
Hello - I'm back in the land of living!!!
Thank you so much all my friends out there, you really keep me going!!. So sorry not been in touch but I've had a couple of s***y days and had to visit hospital to see onc yesterday as was so low I was about to pack this whole thing in (chemo). I was prepared to feel rough/roper - but as goes with most of luck so far I development a severe head that just got worse, it felt like my skull was in a vice that kept being kracked up every 5 mins, until the point of no return on Monday night when I could'nt bear light, my hubbie rang for cuedoc ( out of hours dr) who prescribled codeine which did'nt even help. Onc gave me anti's yest as he thought I must have a sinus infect as chemo does'nt give such bad heads as a side effect and to tell the truth apart from feeling a little tired and wobbly I think I've turned the corner!! That's enough about me, How are you all doing?
Lyn, I'm sending you my very best wishes for Thursday, be strong and look at it as one step nearer, you can do it.
Sukes, hope all went well with your tax and that your not suffering too much, thinking about you.
Ann hope all goes well for you too! I've got recieved some buffs in the post today I ordered online and I'm really impresssed with them, I've also got some trendy bandanas from a shop in Carlisle, which will look quite nice when the weather warms up - looking forward to seeing some sunshine, my hair is still intack at mo, so no need for ratty (wig) to surface yet!!
Rachy, so so sorry to hear your not been to good mentally, if it's any help I've been on and off antidepressents for the past 15 years, I lost my brother tragically when I was 19 and things in life that become a challenge are always so much more difficult to deal with nowadays, your not alone, and until someone has suffered depression themselves its a tough one to describe a bit like breast cancer. I don't know how I'd I've got this far since Jan if I had'nt have increased my dose as my GP told me too. I suffered Postnatal Dep really badly after having my two children, worst after having Kate (youngest) to the point where I could'nt drive or write my name!! - YOU WILL BE FINE, you've done the right thing and addressed the situation and it can only get better.
Sophie, Louise, Lyn, Sarah, and Naz (my sis is called Naomi too), hope you are all well and keeping ok, avoiding any infections taht are lurking around. Hopefully we should see some warmer weather soon which would help us all a great deal.
Take care everyone, must go the dog needs fed, the kids need bathed and poor old hubbie (bless) will be home soon, so the next few hours will be like a whirl wind - I'll sleep tonight
Love and Hugs xxxxxxxxx
P.s anyone watching desperate housewives??