Breast Cancer Now Forum

Hi Marion yep know betwys y coed, lovely. Was going to send OH and the boys for a campervan weekend at the bedgelert forest site so I could have some peace. But the Ludlow arts festival is on and hubby has always wanted to go and see Jools Holland who is playing at the castle on Sat, so I got him a ticket - I am too good to him. Jayne I am feeling a bit down today and bored but when a friend came to keep me company although it was nice to see her couldn't wait for her to go so I could just blob. Am in east European peasant mode today but very comfortable with constipated bloated stomach and steroid water retaining legs. ... View more

Hi Joan yes I think so though no one has written it down or spelled it out. My lump is grade 3 and now tucked behind nipple hence poison first and then the chop, followed by burning and more poison. They didn't do all this to witches did they. on the side effects front the Emend seems too have got the sickness, but still nausea and bad taste persists. Going red from steroids? And massive water/drug retention particularly in my legs, thank god for recliner chair - cannot recommend it enough. Back to poo - constipated again so heavy on the prunes etc. now got new embarrassing SE, got off my chair a little damp around the downstairs area thought maybe sweaty while asleep, but no of course not. Got vag discharge thank god clear on odourless but even so! Thank god had blanket under me and the chair is leather. Hope you out of hospital Chelle and lins what about a digital ear thermometer even an OH cant gate those wrong can they? NicJ xxx ... View more

Thanks Chelle, after chemo I am doing MX then rads and then herceptin so maybe I have a chance For the portacath. good wishes to all today especially those waiting for bar service ... View more

Fec,ked, cycle 2 day2 woke at 2.30 to the rhythm of our milkman running up the drive and upsetting the dog. So to try and send myself off to sleep started reading all the June blogs but instead go fascinated and finally passed out at 6 and only got to page 36! Realised there are so many little throw away lines about our lives that I misses first time round. Chemo brain means I have forgotten some - must have notebook next time, but ones that stood in my brain was Martha you have a toyboy! And Marion where do you live? Rural and a bit isolated? ok need advice. After yesterday and the cannula problems my arm looks like I've been beaten up and it aches badly. Am seeing my oncologist on wed so am after pros and cons of some sort of line. My veins have never been good and I had to keep slowing the nurse down when infusing cos got lots of pinprick feelings and she had to keep drawing blood back and slow down The rate of flow. So bearing in mind I am determined to go to Greece in August which would be more convenient! Which can you still swim in. Our villa has a private pool with little jacuzzi area which is kept spotless. fraid thought off banoffee is making me gag - right off most things with dairy, and thought of cream is making me sick- on route to the now nicjnow nicj ... View more

Jayne if you are lurking, say hi !!!! thought your daughter was lovely. ... View more

Weird instead of a Maxie profile pic I can see one of me on a Segway! ok so i started on all the antI sick meds yesterday to prep for today. then today before I was infused I told the onc nurse all my symptoms and a lot of them will have been caused by the anti sick, so she gave me some Emend before we started and thn gave me the pills to take home for now and next time to see how we get on. So far a bit nauseous and some retching but nothing like last time fingers crossed. But tummy very bloated back to constipation ? Back to the prunes and Movicol. hi pointy good luck for tomorrow. Nicj xx ... View more

Fec cycle 2 day 1 given Emend. Yeah! ... View more

Hate the continuous news scavengers outside Nelson Mandela hospital. ... View more

Hi deedee I regularly wake up between 3 and 4 in the morning. I think it can be a side effect of any anti sickness meds, and if it is of course I have it! There is some advice somewhere which I must look up, but it basically says dont fight it and only use the bed for sleeping so get up and do something until you feel sleepy again and then if you nap during day try and limit it to half an hour. However bed is a very cosy place for me to catch up on emails and stuff, tho today tempted to get out and plant some carrots. i have started to get a bit paranoid about germs and everything too. Went to see the live feed of The Audience ( if ever needed proof of ageing population in Ludlow here it was. My group ranged from 48 -51 and we were probably the youngest there) and was being coughed lon in a bronchial way (sorry if you are eating breakfast) and each time I found myself holding my breath. Was starting to wear short sleeves but am looking for summery long sleeves now, thank you Martha! Will ask today as being infused, excellent I am not very good at small talk so will have a conversation piece with the bartender as she serves that cocktail. Off to make a cup of tea and to see what Martha the cat has brought me for breakfast on the back door step. She is concerned about me and has recently increased her offerings of rat hind quarters and headless rabbits which is very thoughtful of her. (as long as it isn't black and called Dennis) NicJ. Xx ... View more

Temperature depends on how you are taking it at what your normal range is. But I was told a above 37.5 or below 36 to call onc helpline. Especially if you are feeling a bit off too ... View more

FEC x6. Cycles 1 day 21 Yeeah getiing FECKed tomorrow. So looking forward to it. what a lot to catch up on!!!!!! i used to live in York, so many memories many of them Dark but then you would have had to have met my mother in law to understand. what was left of my hair after head shave (£1,500 and counting, thanks for all good wishes) has almost gone - the only bit not gone yet are eyebrows and lashes but the are starting to itch so not much longer. Have been too knackered to come on here. Trying to keep the household running, together with increasing fraught negotiations over DS1 future and the sudden rampant growth of all of my veggies has been exhausting. Although i dont work regularly, because of the demands of the boys, I had done alot of voluntary work, you know the type of thing, school governor, trustee on a couple of local charities, community garden, school reader anything to stop me being an autism bore. i have given it all up with the exception of admin of a tiny local grant giving fund, the parish council have insisted I take leave of absence so that i can hold off 2 rivals for my seat (the joy of rural politics). But I do find it all completely exhausting and am having extended naps during the day. Fortunately, the pet Rats have put on weight and stopped escaping from their cage much to Martha the cats annoyance but Jess the labrador is relieved as Steve Rat kept jumping on her tail and biting it. i think I am worried that if I drop everything I will morph into a cancer bore - you know the type of person who if asked how they are will tell you. I am not too proud to ask friends and neighbours for help And they have been brill. They have helped with school runs, dog walks, planting and mucking out my wardrobe! The side effects are still rumbling on, my latest is excessive bruising after 2 accidental falls, the most irritating is the headache. OH returning from his trip to Houston today, am planning huge roast chicken with all the trimmings so that he can then fall asleep in front of catch up episodes of the Apprentice. Then hopefully he will be recovered enough in time for tomorrow s return to the bar, I am starting with a few canapés of anti sickness, and anti constipate washed down with an aperitif of gallons of water. Hopefully that we set me up for the main event. Although we are all having some wobbles it's good to see the humour is shining through. Nails are becoming brittle so am looking at the range of colours left. Haven't painted nails since days when worked in the City! I would have been in the market for a knicker hair net but no longer have that problem!! Jayne my time slot is 1.30 so you should be passing me in the waiting room. Stay calm you survived the first lot and are now ready to deal with the second, it won't be that bad and just keep your eyes closed but conscious, what you can't see can't hurt you. Since it is likely that we won't recognise each other unless you still have all your hair, I shall be in a fetching annabandanna number attached to my red ipad. See you all on the other side of cycle 2 Nic J xx ... View more

Hi Gussie, I don't exactly live alone, but practically I do. My 16 year old sons are autistic, one quite severly and my husband works on oil rigs and is away for the whole of June into July, and then he is usually home for 16 days and home for 10. So you see I have to be very self sufficient. my boys would not be able to cope in a crises and, one night last week I was in pain from a reaction to one of the drugs and at 5 in the morning had to call the oncology helpline. I then had to arrange for a friend to pick up hardcore painkillers as soon as the pharmacy at 8. Also the helpline people arranged for one of my GPs to phone and I was given a priority appt. My boys were completely unaware that anything had happened. i have had to call the helpline twice, the first time was a couple of hours after chemo, but outside of surgrery hours I had taken all the anti this and that but then promptly threw them up and kept throwing up. I called the onc helpline and they arranged for a Dr to come and see me as I could not leave the house for all the vomiting. The chemo team when you meet them will give you lots of advice on what to expect and how to cope, they will give you all the emergency numbers. Do make sure that you are registered for free prescriptions, and have an arrangement with your local pharmacy about delivery. You should have someone with you to take you home after chemo and stay overnight with you, a friend if not your mother. If you join the June Jewels chemo group and read the old posts you will see that I have had pretty much all the side effects going and they started within a couple of hours. Others either got hit later or haven't had them hardly at all. my tips would be to have all the important contact numbers on speed dial but upfront the helpline or out of hours service that will be your first call.they should give you that when you go for chemo. If you have landline put in those as well. Have a bumbag always on and put your phone and a list of what drugs you are on in there, together with a thermometer. You can guarantee IF you have a reaction and are ill it will be when you have put your phone somewhere, And cant remember where your thermometer is. Also have your most supportive and reliable friend as your safety net. Give that person the same list of important contacts and drugs. Agree with that friend that if you are only able to make one very short phone call it is to them in an emergency and they will call whoever you need for you. In the unlikely event that you have a really severe reaction never hesitate to call an ambulance. I hope I haven't scared you, because chances are it won't get that bad for you. But my current mantra is "expect nothing and be prepared for anything" NicJ ... View more

FEC x 6 Cycle one Day15 Regarding Hair Loss I would thoroughly recommend just going for it and shaving it off. When the Hairdresser (and my son) started to remove my hair she told me that it was starting to go already and that it looked as tho it was going to be quite tender. How right she was. I now have little pin prickey feelings and wanting to itch. One thing that does help is soaking in a bath of eczema type oils but of course if you still have ordinary hair left it will look a bit greasy. I also felt in control so that it was my decision when the hair went and having a basic crew cut is preparing me for when I end up completely shiney!!!!! Its bad enough watching the lady forest shedding and floating away in the bath - my head hair would have felt far more depressing. I think I look like a serene Buddha - pretty apt when my maiden name is Budd! NicJ xxx ... View more

God I am a busy body today, so sit on the loo with your iPod have a country spring soft petals type air fresher to hand, close your eyes and you are there! For me tho no air freshner needed as next door farmer has just slurried one of his fields all I need to do is open the windows. as for the OH - see earlier post on that. Much love and understanding . nicJ xx ... View more

I HATE PREDICTIVE TEXT!!!!! Where is that rubbish bin. ... View more

Fiona re the ulcer - yes of course I have them one on the tip of my tongue. Bongela good but make sure it is foe adults !!! Unfortunately doesn't have vodka in it tho. Try ice pops as well, I founginger gear good for bad taste but crap for the ulcers. I have either lemon and lime calypso s are good and now have a go at making my own from fresh fruit (I've got a lime tree - how posh is that) . BTW Chelle and Jayne next time I am being FECked is 24 June AT&T 1.30. at least I know I am going to be FECked once every three weeks - or has someone already said that one? on nausea front are you on domperidine if yes are you up to 4 times daily and is it 10 mgs? i feel as though I am both 1st and third trimester pregnant, got the hangover from hell after a binge on the hard stuff and (look away Now if easily shocked) wacky baccky together with the feeling someone is of peeling off my skin. BUT it is all bearable and thank god for drugs And at the moment massive craving for a proper bacon sarnie, on thick white bread with brown sauce. But don't tell anyone here - Ludlow is supposed to be the foodies capital and they will evict me! NIcJ xx ... View more

FEC x6 cycle 1 day 14 had a bit of a wobble after all the brashness and high of the shave party, my main asd boy keeps touching my head and asking when is it growing back, so sat down with a year planner and wrote down all hospital visits and tried to guess when we might see some regrowth - anyone any idea? A friend offered to take the other one to scouts for me and I nearly said yes not cos I felt poorly but because of going out the front door with my new look! I did take my boy to scouts everyone was very kind and said I looked good etc but I know I really look like one of the Sontarans from Dr Who. Came home and kicked the rubbish bin around the kitchen a few times. Elizabeth, if you don't like annabandanna there are liots of others and it is worth looking at the American sites too as some have very different things, also there are some that do hats etc with hair which I am quite tempted by, The headstrong thing sounds reaaly good, not sure where my nearest one would be in deepest darkest shropshire, any idea Cassie? Don't rule out buying some soft hats or scarves completely until youve experienced the hair loss. My scalp is very itchy and sore so my wig is really uncomfortable at the moment even with a soft cap thing underneath. As you may have read if there is an SE I will get it, so hopefully you may not lots don't. but just be prepared. The bandanas etc look very different when the hair has gone, but my real gripe is that I already have a chunky body and the lack of hair seems to exaggerate that. The American headware sites talk about padded and pattern scarves etc to try and draw attention away from body size !!!! Might give it ago. chelle just looked properly at your picture, perfect! On the lecturing front and tell me if I am coming across as a bossy know it all, dont be too hard on yourselves - its ok to feel down about all of this, sometimes you just have to let yourself have a bad day. After 14 years of living with Autism I am getting used to the well meaning but a bit dim things some people can say. I get overwhelmed by the why me feelings and sometimes get really angry or just have a really good cry aided by my favourite feel bad songs such as Coldplays Fix You. I don't think I have done anything so bad in my life to deserve all this. One phrase I get a lot from people worried about their child's development is "course it is not as bad for me as it is for you". Comparing isn't really helpful, whatever concerns, problems, side effects you have are valid and are hurting you just as much as my problems are hurting me. It is what you are having to cope with at the time and how far off your current lifestyle, expectations and aspirations you get thrown that hurts and why wouldn't it. Years ago someone said that her attitude was "why not me?" and for years I didn't get what she meant I do now. My mother is 82, has very recently lost my dad after 61 years of marriage, has a son with one leg, a daughter with breast cancer, is undergoing bladder cancer treatment and she feels guilty about having weepy days cos she thinks I've got it worse than she has!!!! It is ok to feel bad so times you have to and have a good rant or cry to relieve the pressure otherwise we might explode. Also if we didn't have bad days how would we know when we are happy, or as I used to be told many times when I lived in North Yorkshire No Peaks Without Valleys. my main way of picking myself up again is also through music either the cliched anthems like I Will Survive, or stuff like One Day - Elbow. Favourite feel good song at the moment - 'Come up and See Me, Make me Smile' Cockney Rebel. Thank you for all your hair removing songs suggest, we used many of them while the kids were piling into set the scene. my friend chose I'll be there for you (friends theme) oops upside your head lets get it started - black eyed peas Wihile having my head shaved the music was shiney happy people - REM here comes the sun - Steve Harley Poison - Alice Cooper (play it and I think you'll understand why) then when they we all leaving we had 'Always Look On the Bright Side Of Life'- Monty Python. i will shut up now and go and let the hens out. Love n Hugs to all and hope everyone has a good day today NicJ xx ... View more

FEC x 6 cycle 1 day 13 Although knackered feeling not bad today so I totally get you Ann when you say you don't want to make yourself ill again. I am thinking of going to the hospital pretending that i am really holding the hand of Robert Downey Jnr and am about to jump off the Grand Canyon on some sort of bungee . Only he or maybe a young James Mason could persuade me to do that (as long as RD didn't open his mouth cos he can be a bit of a twit) . in the picture Tim is the one with headphones off to cut down the sound and the other one oils a lovely lady hairdresser who was very understanding about my boys, very gently with the clippers and whispered in to my ear that it was probably as well I was cutting the hair off as it was starting to go already And was looking as though my skin might be getting sensitive. How right she was my scalp feels like a pin cushion so am about to have a long soak in a bath of eczema oils to see if that works. Am expecting the "lady forest" to float away while I am in there! Thank you to those who said they might donate. I will pass the link on if you PM me. We are at just over £1,000 so far. NicJ xx ... View more