Breast Cancer Now Forum

Hi everyone, I'm one of the February Valentines and 4 weeks into chemo. Not an awful lot of hair left (coming out in handfuls this week). Decided against a wig and have bought a few little caps online from AnnaBandana. Very well priced, soft cotton and excellent service. Maybe worth a look. All best wishes, Gill ... View more

FEC-T, FEC cycle 2, day 6 (Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals) Morning Valentines! Woke up to blizzard here in Kent and 4-6 inches of snow backed up against everything. Didn’t stop me getting out of the house to buy a newspaper (one of the few things that I still insist on doing daily in an attempt to pretend that nothing has changed) … but loads of neighbours have obviously opted to “work from home”. Three of them just left to go out to lunch together. Nice life! It’s all very pretty, but not really what I would wish for mid-March when the true joys of spring would be beneficial. Although the sun is just shining through now which is lovely. Once again loads of posts to catch up on. Apologies this time for totally impersonal replies. When I finished cycle 1 my onco said that I would now know what cycle 2 would be like. Well it’s actually quite a bit different (apart from the constipation – which is pretty much under control thanks to your suggestions and heartburn)…. and from what a few of you lovely Valentines are reporting, it also appears to be so for you. My sensations of taste have altered, but differently from cycle 1. My mouth is sore and I have had a couple of little ulcers (new). Still like Marmite though. The disruption to sleep however is the worst bit. No nightmares as yet (feel so sorry for those of you with this additional plague), but just unable to sleep for more than about an hour and a half at a go… I do usually fall asleep again at some point (to wake again after a short while) and am feeling quite shattered and frustrated. Going to bed during cycle one was almost the highlight of the day (could forget S-Es etc.) – now it’s beginning to be a right pain in the backside. Maybe it’s because I’m out and about even less than usual…. Hair has been falling out in handfuls since yesterday…. very cold around the neck and ears. I can see the sleep caps coming out before too long. The hoover is certainly earning its keep at the moment. Kath – loved the Sentinel poem. One thing I have noticed this winter here is the total lack of interest in bird food (all sorts) from all parties. Strange? All love to those having a really rough time, worrying waits and down days at the moment. Here’s hoping they pass quickly. Take care, stay well, Gill ... View more

FEC-T, FEC cycle 2, day 3 (Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals) Left it a couple of days before posting again and you have all been so busy! This site really is a boost! Apologies in advance if I miss anyone off. Angie: you’ll have left for your holiday by now, hope you are enjoying it. Cornwall is lovely. Louise and Jen: with you totally on the cats (on all counts). Funki: hope the injections work for you. I will hold my hand up and admit to no additional side-effects from them – and they appeared to work as I stayed infection free. Only advice I would give to anyone self-administering is not to dither. I was fine when I just “went for it” but as soon as I started thinking “where I shall I put this one?” I nearly failed. Start my next lot on Monday for 5 days, so will try to heed my own advice! Well done to Featherbird for escaping at last. Long may it continue. And to Caroline for getting on board. The waiting is a real pain – and I’m sure Chris, Kim, Lisa and Linda are feeling the frustration. They say that patience is a virtue, but in these circumstances, I think we’ve all got the best excuse not to be virtuous. Kath: you are a true poet. “Goats” made me smile. As did Mandy’s toilet / curtain tale. Just need to ask a question though. What is window cleaning? Alison: hope you’ve not had any more palpitations. The advice was not mine, but from my onco. We now seem to be on the same cycle days. I had a fair amount of tachycardia and the odd missed beat in the night following treatment 2 on Thursday, but nothing like the first time. So decided not to put myself through the emotional pain of a trip to A&E. Will see what treatment 3 brings – but that’ll be the last before switching to T… whatever that does! Treatment itself was much faster than the first – the nurse (a different one this time) really pushed it through. She also had trouble finding a suitable vein and kept jabbing at nerves (painful). The only really unpleasant bit was my arm felt like it was freezing up. The drugs hadn’t had time to warm up – having come straight from the fridge and there was no comforting chit-chat this time beforehand. I got the impression that they were rather keen to get off early! Have felt a little more fatigued, but definitely more prepared to face the side-effects than last time. Hair coming out – but not so much chunks, as far as I can see. More like thinning all over. Good luck to all persevering with the cold cap. Hopefully it’ll bring the results you want. Karen: can hardly believe you’re about to go for your 3 rd . So glad you started this thread. Gives us all additional support. To all of you mums: hope you have a lovely day tomorrow and that your children, younger and older bring you much joy at a time when you all need it. Take care, stay well, Gill ... View more

FEC-T, FEC cycle 1, day 21 (Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals) Well – I have got to the end of the first cycle and got the “OK” from my oncologist this afternoon to have cycle 2 tomorrow. However ….. if I get an irregular heartbeat again in the hours following treatment, I am to call 999 straight away so that I can get an ECG in A&E whilst it’s actually happening. Only posting this as someone else had palpitations during their first cycle. Kath, was it you? Sorry I can’t remember. Onco added that an irregular heartbeat was a known but very rare side effect of FEC and hoped that it was a one-off (which I do as well). Don’t fancy a trip to A&E at any time, let alone in an ambulance in the middle of the night (too many bad memories, I’m afraid). Thanks to Dyane and Alison for your encouragement re. friends. I will take this on board and gently remind them that I am still me, albeit a rather balding version of me! Elaine – sorry to hear you’re feeling wiped out and having a weepy day. Seems to have hit a few of us this week. I’d put it down to the weather if it weren’t for the chemo! Hope things improve soon for you and all others. Take care, stay well, Gill ... View more

FEC-T, FEC cycle 1, day 20 (Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals) The rollercoaster of chemo seems to continue for so many of us. Really sorry that the cold cap doesn’t seem to be performing well for anyone. I thought about it for a long time, then decided I’d rather spend less time on the unit. Losing hair of any length is going to be tricky, but I must admit that I have enjoyed the freedom that a short crop has brought over the last couple of weeks in terms of quicker washing and drying. However novelty has worn off: thinning definitely all over now, and dread the “fall-out” in the shower. Like Amanda, there’s a risk I’ll be tempted not to wash it, just to avoid the inevitable. Hummmm. May need to opt for a shave sooner rather than later. Lisa: sorry to hear that you’re not so comfortable. It took me a long time to find the right combination / position of pillows etc. after each of my ops. At least I was spared infection. Must be horrid for you. Hope it clears soon and that you can get some rest before chemo starts. Funki: so glad to hear you’re back with us. I hope your onco appointment went well today. He sounds lovely. Seeing mine tomorrow. She’s also very caring, but I can’t see her shaving her lovely thick dark locks in solidarity! Sandra: I hope cycle two went well for you and that you manage to avoid the dreaded N this time round. Featherbird: hope they release you soon. Incarceration must be awful. Alison: puppy is gorgeous (I’m a cat person – but couldn’t possibly skip over the post). I got myself two oversized rescue cats shortly after diagnosis (at the time I had been told that chemo would not be needed, ha ha). They keep me sane – well, relatively; get me out of bed and occasionally make me laugh. Wouldn’t do so well on a lead, I fear … that’s where puppies / dogs have an inherent advantage. Enjoy! On the flowers front: my elderly father (still in shock from the news) sent me a small cheque the other day with a note. “I can’t be of any practical help, so at least let me brighten your days with flowers”… So I am. Friends have held back on flowers, so I am much appreciative. Friends have actually held back on most things in fact. It seems as if they are coping less well than I thought they would. I spoke to one who lives abroad yesterday who said she was scared to email me with “trivia” – so hadn’t emailed at all. Trivia is exactly what I need! Just to know there is life beyond BC, no matter how trivial. Maybe I need to let the rest of them know how I’m feeling. I have found cycle one to be incredibly isolating. I don’t want cycles 2-6 to be the same. Apologies to all for ending on a “down note”. Take care, stay well, Gill ... View more

Much relieved to hear that you are up and about Funki. Good luck at the clinic. Unfortunately I have learned the hard way that "if you don't ask, you don't get" where cancer is concerned. So ask, ask, ask.... Keep us posted if you can, Gill ... View more

FEC-T, FEC cycle 1, day 18 (Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals) Just a quick late weekend post from me…. so sorry even more of the Valentine clan have had to be admitted or are being treated at home. Hope you all improve loads soon. A friend who had BC a couple of years ago warned me that although the cancer hadn’t made me feel ill, the chemo might. I’ve been pretty lucky so far and really feel for those of you with bad SEs. Lots of posts since I last looked – too many to comment on individually (apologies). But well done to escapees, to Linda for your results, to BlueRose for donating hair (I did as well), and to those managing so well to keep families – young and old – as happy as possible at a really difficult time. Kath and Angie: I decided not to go for a wig for a number of reasons (eczema primarily, caused by man-made fibres) and as my hair has started to shed today, I will probably be wearing the little cotton caps and bandanas by the end of the week. Oh joy! Never liked anything on my head, but it’s too cold to do be impersonating Sinead O’Connor…. Take care, stay well, Gill ... View more

FEC-T, FEC cycle 1, day 15 (Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals) Well done Mandy for getting off the starting blocks. You obviously have a lovely BF. Mrs Tingley is a great gift, even if you’d rather not have had the occasion to go with it. And to those Valentines already on round two. It’s scary how the last weeks have flown past. Hope the SEs remain well in check and munchies well served (Kath)! Alison – Pleased to hear that they are letting you out and hope that any further night in is not too frustrating (if it proves necessary). Kim – are you still locked up? Funki – don’t like the sound of your pain. It’s inevitable that we will worry about unknown stuff (given the literature we have been encouraged to read) and as others have already said, don’t hesitate to go back to them if it returns. Better safe than sorry (I was told by the once nurse). I also heeded Alison’s words from yesterday and rang the onco unit this morning regarding my nosebleeds. They confirmed that as long as it’s only when I blow my nose, then it’s OK – and then advised against blowing of said nose! I will sniff my way through the runny nose period…. delightful… Welcome to new Valentines InShock and Penguin68. Sorry you have both had to join us. The Valentines are all very supportive and I find that reading alone, if not posting, is reassuring. Take care, stay well, Gill ... View more

Apologies, forgot to add that nose-bleeds stopped pretty much. But am very spotty... Reminds me of the worst teenage years - don't really want to go back there. Gill ... View more

FEC-T, FEC cycle 1, day 14 (Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals) Just thought I’d add my thoughts on injections etc. I used to work for the NHS – spending a lot of my time trying to save a few pence here or there, so any mention of cost vs. patient benefit makes me cross cross cross! Filgrastim is the drug that most of us (? some of us) seem to have been prescribed for the prevention of neutropenia. Nivestim is the most common brand name – and injections are (I believe) made up on a basis of 5 micrograms per kilo body weight. They were, no doubt, once upon a time, very expensive and will have led to the variations in prescribing policy from trust to trust that we are experiencing. I have tried to get hold of current wholesale costs, but have failed. Figures I could find for 2010 were around £58 per daily injection for a 60kg person. I had 5 of these in cycle one, costing a grand total of approx. £290. As far as I am aware this is excellent value for money compared to the potential cost of in-patient care, along with the associated (more expensive) drugs used to sort out neutropenia once it has occurred. I love the NHS, understand budgetary constraints etc. but some doctors should do their homework a little more carefully before using money as an excuse for not providing best possible care. Rant over! To Alison and Kim – So sorry you are still locked away. Hope your doctors / nurses etc. are treating you well and that an escape route is in sight. I hate overnight stays. I’m sure I’m one of the most impatient patients. Angie – not so sure about onesies myself but I admire your bravery and look forward to the photo. Take care, stay well, Gill ... View more

FEC-T, FEC cycle 1, day 13 (Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals) Well done Jo and Jackie for being discharged! Gives us all hope. Inspired by the bravery of all of you who have been updating your photos (and you all have beautiful heads, by the way), I have added mine. This is after 12 inches lopped off, 10 days ago. Having a couple of emotionally wobbly days at the moment, I was caught out by a well-meaning lady on the tills in the local supermarket this morning who complimented me on my new hair-cut. I should have left it at that, but felt the need to explain why (donation to charity / chemo etc.) and that I will probably look a little different this time next week. She (and the lady behind me in the queue) were so generous in their well-wishing that I had to make a rather quick exit. Apart from that, I’m doing OK, although had a few minor nose-bleeds (platelets low) when blowing my nose. Best course of action: not to blow nose! Somewhat tricky when nose has started dripping a lot (first sign of hair loss, I guess?). If the bleeds get bad, I will check with the chemo team, but am choosing to go with the flow at the moment (apologies for the pun). I’m so glad that I’m not the only one who has felt the need to acquire some PJs. The only pair I had before was for camping (cold nights on Scottish mountains)! They are weirdly comforting at the moment – as some of you have also commented. Any further suggestions for instant comfort-fixes most welcome… Take care, stay well, Gill ... View more

FEC-T, FEC cycle 1, day 12 (Kent Oncology Centre - treatment at both Maidstone and Tunbridge Wells hospitals) Another eventful day in Valentine world! Jo, Jackie, Honey: so sorry you’re still stuck in not-so-splendid-isolation. Keep working on those numbers. They will come up again. Dyane, Alison: you both seem to have been having a rotten time as well. Hope things improve soon as well. Funki: I developed cording after my first op and then numbness and more cording after the ANC in January. I have noticed that the tightness, numbness etc. is generally worse if I fail to adhere exactly to the exercise regime that I have been given. I’m not saying you don’t do yours, but there were a couple of days last week when I let things slip badly and was also a bit slapdash over this last weekend. To be honest, I am a little fed up with 11 exercises, 10 times each, 3 times a day, now in 10 th week with no end in sight! Onco-Physio – who has a waiting list longer than anyone would like – implied that it would probably be months of hard work! I have only seen her once and not due to go again for several weeks. Demand is very high, resources very low. Another thing that I find makes a difference is comfort / fit of underwear. A little pressure point can feel like a big poke! Maybe something to try and change? Good luck. If you find a different solution, let us know! On the grapefruit front: the research appears a little inconclusive and I have found no specific reference to interaction with FEC-T. However, two sound reasons to avoid: definite possible over-reaction with certain meds (including some cancer drugs) – as per Alison’s kind link above, as well as the obvious conflict with soreness from mouth ulcers etc. Shame. Day 12 has generally been a better one for me. More energy, less lethargy. I even bought and washed some “hospital pyjamas” …. just in case! Very best wishes to all and hopes for a less eventful day tomorrow, Gill ... View more

FEC-T, FEC cycle 1, day 11 Dear Valentines, It's been a couple of days and it's taken me a good while to get through all the new posts. You have been busy! And this will need to be a quick one - sorry. So sorry to hear Jo and Jackie that you are in hospital. Fingers crossed for better news tomorrow. And for all others who have had set-backs over the last few days. On the food front - I was given absolutely no info on what to avoid and after my lovely plate of kedgeree last night (home made) I'm a little concerned about the rice..... A friend also told me this afternoon that she had been advised that grapefruit was a complete no-no... I'm not too sure about this and will do some more research. As soon as she said it I decided I wanted some! Woke up three nights ago with a craving for beetroot. So my appetite has returned, but in the weirdest way. Can't complain otherwise, although had a weepy day yesterday, sleep is erratic and am feeling the cold. Very best wishes to all, keep warm, Gill (in Kent – treatment at both Maidstone and Tunbridge Wells hospitals) ... View more

Dear Simmoo, So sorry to hear that your recent treatment was unsuccessful … all fingers crossed for the next round. I write, not only as a BC patient (diagnosed in November, just started chemo), but as a fairly recent widow. My husband died earlier last year, just 12 days after being diagnosed with stage 4 gastric cancer at the age of 57. In a state of devastation and shock, I found myself having to second guess his wishes with regard to his funeral. I too “wanted to get it right”. I did my best and aimed for a quiet celebration of his life, rather than a day of gloom. He was a very modest man – never wanting to be the centre of attention (tricky on this occasion) and I knew that he wouldn’t have wanted a great fuss to be made. So it was a small, personal, non-religious affair for closest family and friends. This approach led, unfortunately to some unpleasant repercussions with his brother (who had showed very little genuine interest in him / us over the years) and criticism from old friends from his home town (where there is a strong expectation that certain religious rituals should be followed). My (in my opinion, justified,) unwillingness to let the brother dictate what happens to the ashes has also caused a regretful rift. I have learned the hard way that I now need to protect myself and my loved ones – particularly as I have rather strong views on funerals, their purpose and cost. Prior to my first BC surgery in December I made sure that I left a clear note for my own brother in which I have asked for some very simple things to be respected when planning my funeral. This would hopefully spare them the additional turmoil that I went through last year, and give them some feeling that they “got it right”. I didn’t feel it appropriate to raise the subject in person at the time. Dropping the BC diagnosis bombshell was bad enough so soon after my husband’s death! Leaving my wishes in a letter seemed right. It is also something I can change at any time as things progress. Wishing you all the best with your deliberations and further treatment, Gill ... View more

FEC-T, FEC cycle 1, day 7 Hello Valentines, Mandy – so sorry to hear the latest news from you. Hope you are feeling a little less raw today. Swearing helps and you should NEVER apologise to any of us here. I found a call to the nurses on the BCC helpline reassuring and helpful during the times when I was trying to get my head around what was happening to me (and had no-one to share it with) and the options I was facing. I read your profile that you are trying hard not to upset friends and family. I did this for the first 3 months, until one of the local BCNs suggested I stop thinking of others and look after myself for a change. Psychologically it seemed to help. Otherwise, I can only offer virtual hugs and thoughts. I was going to share some snippets today in case they are of use to others. Will keep these brief. Heartburn – helped by one of the anti-sickness meds I was given (but had stopped using) … I re-read the leaflet inside! Bunged up – my naturally high fibre diet was not enough to cope. Prune juice seems to be helping… (much cheaper in Tesco than health food shops). Alternatives to alcohol – M&S sell a grape juice and elderflower sparkling water. Wouldn’t have touched it in “the good old days”, but is actually very refreshing (and felt like a little treat). Sleep caps etc. – have had my first order delivered from AnnaBandana. Good quality, soft cotton, very reasonably priced. Very best wishes to all, Gill (in Kent – treatment at both Maidstone and Tunbridge Wells hospitals) ... View more

FEC-T, FEC cycle 1, day 5 (great idea, by the way). Good morning Valentines. Pleased to read all the weekend posts. I have had a couple of quiet days after bravely cutting off the hair to donate (a bit of a shock after nearly 20 years long). A friend kindly trimmed the resulting mop to something less scarecrow-like yesterday. I'll need further cuts over the coming weeks, I'm sure - but this way the hair to donate was at least not damaged. A little cold round the neck / ears though! Self injected first shot this morning. As so often - anticipation far worse than the event itself. I have 5 days of these to do. Like some others, I have developed heartburn ... perhaps as a result of a small glass of red wine last night. This also tasted a bit metallic, which is a crying shame. So stocked up on Gaviscon this morning. I look forward to following all your ideas for alternatives to the wine as I won't manage the 6 months without dulling the nerves occasionally. Good luck to all starting this week. At least the sun is shining today. Gill (in Kent, treatment at both Maidstone and Tunbridge Wells) <== thought it might be of interest to see where we all are? ... View more

Hello Valentines, Glad to hear you are all managing to keep your spirits up, one way or another - although at times it must be incredibly difficult for us all. Pleased for Mandy and hope all others waiting for results get good news soon. I found the waiting the worst. And having finally got to C-Day yesterday, just thought I'd drop a line. Nausea well controlled so far, but had wretched palpitations in the night accompanied by severe oedema (mainly hands and face) - looked like a puffer fish this morning. Have been advised to get an ECG at the GP surgery - just in case. I'm sure it's all due to the chemical overload yesterday as things have calmed down today. A decent night's sleep would be good though! First hair cut tomorrow. It's long enough to be of use to charity - so it'll go to The Little Princess Trust (http://www.littleprincesses.org.uk/) who have wigs made for children undergoing chemo. I haven't been to a hairdresser in 15 years (my husband used to trim it for me) so this will be a DIY job. They are very clear on how they want it cut to get an even length etc. and I think I can cope with that. Whether I ask someone to "tidy up" afterwards (second cut) depends on the resulting mess! If it falls out quickly it shouldn't really matter. But maybe I should find a sympathetic local cutter as Angie did? Wishing all a calm and care-fee weekend, Gill ... View more

Sorry to hear some of you are having a bit of a rough time with it all at the moment - one way or another. They say we all respond differently, so it's at least encouraging to know that that much is predictable! Hope things improve for all soon. I broke the news to my father yesterday. Devastated, but grateful that I was able to do it in person, rather than by phone. Tried to get him to focus on positives etc. but I think he was still reeling from the shock to be able to do that. I've had three months to get used to the idea, so I need to give him some time. He wants to be updated far more often than I had intended (i.e. daily rather than a couple of times a week) so I will need to address his expectations again. If there's one thing I've learned over the last weeks it's that I need to feel that I am in control of this - not that others (whether clinicians, family or friends) are taking over my life for me. I'm still able to make informed decisions / enjoy bits and pieces / do most "normal" stuff etc. and am determined to carry on this way. Chemo may make me feel grotty, but I am not going to let it get the better of me. Saying that now, may think differently after Thursday! Sorry pat.masp - can't help with eCMF. Am having 3x FEC and 3x Docetaxal. Take care all, Gill ... View more

Many thanks to Angie and Jen for sharing your experiences re. breaking the news to your fathers and to Linda for your words of encouragement. I am about to leave and have prepared some notes so I cover everything I think he needs to hear (and none of the scarier stuff). I will focus on the positives and try to get him to do the same. I'm also going to give him the BCC Helpline number so that he can call them with any concerns he has without feeling he's going to worry me. It's great that the service is open to family and friends as well as "us lot"! Take care all, Gill ... View more

Thanks for welcoming me into the fold! I have my pre-chemo "chat" on Tuesday, which doesn't leave a lot of time to get stuff ready for Thursday (if I need to). I seem to have procrastinated a little too much over the last few weeks! Have decided against a wig as am allergic to almost all man-made fibres and a wig would probably just give me itchy spots. So caps / scarves / beanies need to be bought too. Main worry at the moment is the fact that I've reached a point where I can no longer keep this from my elderly, needy father. Have managed to avoid the subject for the last three months. Hair loss, however, (have had long hair just about all my life) is harder to hide - as is the fact that I may not be feeling up to travelling to see him for a few months. I am going there tomorrow to break the news. He will be devastated. My husband died last year, 12 days after cancer diagnosis, so my father is already more than aware of the fragility of life and although I'm 52, and my prognosis is very different, I'm still his "little girl". If you've got any tips on how best to do this, I'd be really grateful. Take care all, Gill ... View more