Breast Cancer Now Forum

Hello Blissie 🙂 I agree, this is a lovely friendly place to be when you're going through this process!   I finally feel like I'm emerging back into the world again after my first trip down the chemo rabbit hole last Thursday! Have learnt a lot, and will do quite a few things differently next time. Have also spoken to my BC nurse at length and am going to meet with my oncologist re managing periods/treatment if we have another clash in the future - although we'd discussed it and checked that the different meds wouldn't affect how well the chemo would work, we should have thought more about the actual experience (I haemorrhage without meds, so not taking them wasn't an option). Currently being monitored for anaemia, and still feeling pretty wobbly at times.   That being said, I don't think I've been too bad... no sickness, any queasiness sorted quickly with meds. I've found the utter fatigue - going to rest and waking up unrested - very strange. I've felt pretty stuck in my own head, and a little panicky at times, especially as the process was all so new and I had no sense of when it might end - hopefully familiarity will help with this in the future.   I'm so sorry you're having a hard time Michelle... it's definitely not a reflection on you, as cancer and and chemo is a @#$%ing hard thing to deal with on any level. And I appreciate worrying about your partner... I do too, and our instinct is to help them but at this point we can't do very much more than try and express what we need. My BC nurse has been really helpful with this - she has been happy to have H with us for appointments and to spend time answering H's questions and concerns as much as mine (also laughing at H's terrible boob jokes, which she can only blame herself for) - do you have a nurse? Could they spend some time talking to your partner?   Through this whole cancer carnival, I've found the Breast Cancer Care line really helpful - for practical info for me, but my dad has also had some really good support  with general questions, understanding the process and some more emotional stuff I think (he says he "just had a natter" - not one for counselling or headdoctors!). I'd definitely recommend giving them a call 🙂     I have also been visiting my local Breast Cancer Haven (https://www.breastcancerhaven.org.uk), and am finding them a huge help and resource. They have recommended to me by my BCN, my oncologist and other patients, and offer complementary support. They're a little more airy-fairy than I'd normally choose, but they provide some really lovely, relaxing therapies and classes, plus info in an environment that's much softer and less clinical than a hospital. They provide a number of hours (12, I think) free support - so I've had a couple of massages and a nutritional session so far - but this includes up to 4 hours or support for a partner. Am currently persuading H it would be a good idea to use at least one, if only to check whether they are "too mung-beany" for her  If there is a Haven near you, it is definitely worth looking in to.   And last - in what I now realise has turned into an epic! - I second the suggestion for Suburban Turban! I have also found Pinterest really good for ideas on scarves, including from very simple guides for tying them to inspiration for some of the most stunning headwraps! I searched for "how to tie headscarf", but also "headwraps", "headscarves", "kerchiefs".  And the other day I found myself asking a lady on the bus who had a really stylish wrap on how she had done it... we were both a bit shy at first, but she was happy to explain 🙂   Now, sun's out, bloosom's blowing and I need to go and vote! ... View more

Now I'm texting my other half to get *me* some ice lollies too - the peer pressure on here is terrible 🙂     Michelle21, here's my latest hair:  I have my wig fitting on Monday - I think I'll start with my natural coulour (mousy chestnut) and perhaps go a bit mad on the shape/length! Not sure how much I'll use a wig, but thought it was a good idea to get one and have the option. ... View more

Morning all 🙂 Glad we all seem to be feeling better today! I'm still a bit groggy and flat but pottering and resting is working well - actually dozed off on the floor doing my post-op arm stretches. Worst thing is a very sweet taste in my mouth, and incredibly sore hips (often uncomfortable during my period, so just think chemo has amped it up).   Re sore mouth, I was advised to use chlorhexidine mouthwash, which I do anyway as I'm prone to upset gums and ulcers. I use Corsodyl - tastes like hell, but works - both mouthwash and toothpaste. Both my oncology nurse and dental hygienist recommended continuing using the toothpaste with a soft manual brush (normally I use electric) and gentle flossing, and only to use the mouthwash if my mouth's getting uncomfortable (Corsodyl has dilution instructions on the side). The wash can stain your teeth after a while, but it's easily sorted by the hygeinist.   I'm not cold-capping... I change my hair quite frequently anyway (I caused panic booking my wig fitting when I told them my hair colour's cyclamen and peacock blue - had last haircut and colour straight after my oncologist's appointment confirming I would lose it!) and I really can't bear being cold. Sounds silly put like that, but when it's painful and time-consuming and I'm happy enough to play around with scarves and hats, and interested to see how my hair will grow back, it made sense not to. ... View more

Good that you're seeing the consultant - hopefully they can make some changes to help you! Meant to say earlier re iced tea that you can usually make it by brewing up a strong batch (3-4 teabags in a litre of boiling water, but leave the bags in until the water starts to cool) and add some sweetening - honey works really well with most herb or fruit tisanes. Stick it in the fridge and enjoy 🙂 You need to make it considerably stronger and sweeter than you would drink it fresh, as the cold dulls the flavours and aromas that are normally enlivened by the heat. You might need to experiment a bit to get the perfect mix, but it's always fun trying! ... View more

But ugh... Worst Hangover Ever, and without the party first  First dose of EC yesterday, all went smoothly but felt really rotten in the evening. Been good and followed instructions with antisickness meds, slept reasonably overnight but then also been fast asleep all morning - not my usual mode at all! Think I'm being very sensitive to everything because it's my first time, and suspect that once I'm more familiar with the process I'll wonder what I was being such a sook about! Definitely feeling brighter now, and pottering about a bit.   Hope everyone's Friday goes better than expected 🙂 ... View more

Hope it's all gone well today Christine Rim! As you say, it's good to be able to keep crossing things off on the calendar and know that you're getting closer to the end of the process. And hooray on the good news re leukaemia meds and hereditary results 🙂 Information is so helpful and always makes me feel much better and more in control. ... View more

Thank you wildshell 🙂 At the mo I'm more worried about the mix of tabs I'm on for managing the blood loss and pain with the chemo drugs. MrsPadaeva has pointed out that actually the anti-sickness stuff with the chemo will very likely help with the period grottiness as well, so that has cheered me up 🙂 ... View more

*squeezes* Michelle21. I'm so sorry you're losing your hair when you so badly want to keep it, and it is fine and completely understandable to be upset about it *more squeezes*. You may still not lose it completely - the cold cap info I've seen says that you will lose some hair regardless, but you are quite likely to keep enough to not need to cover it - sending you lots of love and hairy thoughts. ... View more

oooh... that sounds *really* uncomfy MrsPardaeva! Glad the extra meds helped during chemo, and hope your back is on the mend! ... View more

That's what I'm thinking... 🙂 ... View more

Blerghh... woke up at 3 this morning to find that my period has arrived very early - not too unusual but really unfortunate. I have always had bad problems with them, and now take meds to control extremely heavy bleeding and very strong pain. I specifically checked at my pre-assessment yesterday whether I would be okay to keep taking these while on chemo, but didn't anticipate taking them at the same time as treatment. So I'm now facing going into my first cycle already sore, nauseated and headachy, and worried that these other meds will somehow delay or interfere with the chemo 😞       ... View more

Your post made me giggle, MrsPardaeva - it's my mother-in-law who tells everyone! It's very odd as she is not at all a gossip and is generally very Lancastrian about sharing things (i.e. doesn't). I've even had an email message from her hairdresser's daughter saying she's sorry I have cancer (I've never even met her hairdresser), and the sister of one of her old school friends has knitted me a hat!   ... View more

Pleeeease stop talking about cinnamon rolls or I will be making a dash to ASDA in my jimjams!    Thank you Gigi for the information about your work! I think I've been through a similar process - intially thought three weeks for op then a few weeks of half-days for radio would do it, but then 18 weeks of chemo threw in a real curve ball especially as I've not been able to go back in between. Headwise, I'd be very ready to go back tomorrow (my original return date) if I could, but my onc. recommended taking the full 3 weeks of the first cycle off to get the feel of it, so that we could make realistic plans for the remaining cycles, rather than just trying to wing it - this makes sense to me, and I'm hoping I'll be able to work for a good chunk of each cycle after that. It's helpful to hear others' experience as it gives me a realistic guide as to how I might be able to work it, and to be able to present an effective plan.     ... View more

It's "battle" and "fiight" for me! I think it's growing up and living in a fervently pacifist environment that makes some of the militaristic language you hear around cancer really upsetting to me. When I was diagnosed I actually rehearsed what I would say to anyone (friends and medics) about the terms I preferred to use (cure, heal, recover etc.), but haven't actually had to say it!   I don't mind "stay positive" or "stay strong" as I hear it as a recognition that I already am those things... although it's possible that I am *too* chirpy and cheerful for some folk's liking as the comment that's actually taken my breath away (and I've had this twice!) is "I wish you'd take this more seriously.."!    On a brighter note, my pre-assessment for chemo went well today. It felt rather like starting at a new school, being shown round as the New Girl, and sizing up the other kids in the waiting room (but at least these days I already know that *I'm* the odd kid with the wrong school bag!). Bloods taken okay, Han (my other half) didn't faint and we scored a new cookbook 🙂 All systems go for the main event tomorrow afternoon. ... View more

Sorry Dorabel, I must have been writing my last post when you wrote this! Glad it's gone well 🙂 I'm having EC too, starting on Thursday, so will be following you with bated breath! ... View more

Hooray! News just in: clear margins achieved - no more surgery for the moment 🙂 Very, very pleased as next stage would have been full mastectomy (which I would have done if needed... am just so glad it is isn't).   My initial lesion was just behind my nipple and the first surgeon I saw cheerfully announced that might want to consider a full mx (for a 20mm lesion) as the nipple would need to go. On the advice of my cancer care nurse, Sarah, we spoke to a different oncoplastic surgeon who said that it should be possible to save the nipple, and by Jove, I think he's done it! It's taken two attempts to get the slippery little bastard, but the initial cancer's gone.   In other exciting news, I've also managed to score a pair of golden Converse high tops from TK Maxx - the only pair, and in my size, thank you very much - so this is going down as a Rather Good Day for me. I hope you all have lovely evenings and gentle mornings and I will see you all on the other side of my chemo pre-assessment tomorrow.  ... View more

So pleased to hear you're feeling sparklier, Christine 🙂 Hope your week continues well. ... View more

Arrgh... that's maddening, Christine! So sorry you're having to try and sort that out but hope today has started out a bit brighter for you.   I'm still enjoying the lovely feeling of my first shower after surgery 🙂 I quite like baths, but never feel completely rinsed and clean after them and this first shower is a joy! No appointments today, but plenty to sort around the house, and should be getting a called from my cancer care nurse this afternoon after the regular multidisplinary team meeting - hopefully with the path results from my re-excision, fingers crossed for clear margins.   As well as being jealous of your garden seat, Gygi, I'm interested that you're working at the moment - how have you found it? Have you had to change your hours or work patterns very much? I'm off at the moment (3 weeks for surgery became 6 weeks for two lots of surgery, and now is running into chemo, for which my oncologist strongly recommended taking the first cycle off to see how it went), and if I wasn't starting chemo this week I'd be heading back in tomorrow and quite looking forward to it (I have started talking about the people on Netflix shows as though they're my friends...aaaargh).  ... View more

Oh Christine, that sounds really hard *squeezes* We are here to listen and to help where we can, so please keep sharing if it helps. And don't worry about being upset... you are in a very upsetting situation and it is a natural reaction - let the tears flow if you need.   Do you know if your two treatment teams are talking to/working with each other? It definitely sounds as though information isn't flowing as it should, especially if it's not making it to you... can you ask both your oncologists to speak to each other? I know it takes energy and it isn't really something you should have to sort out yourself, but you do need to let someone know that something isn't working.    I'm glad your secound round of tax has been a bit better than the first, and hope it continues to improve! Am sending more *squeezes* and some friendly thoughts 🙂   ... View more

Hooray! Got my dressing off today, all is present and correct - nipple is still there albeit a little crispy and a bit wall-eyed. More importantly, healing has gone well and we're full steam ahead for chemo to start on Thursday. Have a call from the oncology nurse tomorrow and my pre-assessment on Wednesday morning, then in for my first dose of EC on Thurs afternoon.   I've also got an appointment at The Haven (I think there's a few around the country?) on Wednesday afternoon, and looking forward to see what they have to offer (lots of lovely relaxation, I hope).   Hope everyone else is having a good start to the week 🙂   ... View more