Breast Cancer Now Forum

Hi, as you're so close to having your claim ended I would contact your MP. It's what I had to do to get my claim moved along. Explain your situation and the impact of not being assessed before the 52 weeks is up. Yes, you will have your claim ended even though you haven't been assessed yet. Emphasise you're still in treatment and you face having no income. Works even better if you have a Tory/LibDem Mp! It's a rubbish situation to be in and I wish people were more informed about what's going on. HTH and let us know how you get on x ... View more

Hi again 🙂 Just to clarify, if you're on contributions based ESA then its 16 hours and no more than £90ish pounds and you keep what you earn. If it's income based ESA then its still 16 hours but anything you earn over £20pw is deducted from your ESA. I agree though, it's difficult to find a flexible employer you are covered by the DDA at work. HTH x ... View more

If it's any help you can do part time work whilst in receipt of ESA. It's no more than 16 hours earning less than £90?.. you'd have to check the exact figure. This has helped me work out what I'm capable of right now and means it's not 'all or nothing' which has been very helpful. I can't work full time yet (maybe never!) but at least there's a bit of money coming in. HTH ... View more

Hi, I had 11 of 12 weekly pacletaxol and my BP did go up. In fact, it's remained high even though I've now finished my AC chemo and RT aswell. Partly I think it's the weight gain, partly the stress. I also read somewhere, but can't remember where, that the high BP is somehow connected to the nerve damage you can get with pacletaxol. Maybe that's something to look into. I'm left with periphiral neuropathy so that could make sense. I don't think there are any definitive answers as treatments and our reactions to them are just too individual and varied.... very frustrating at times I know. HTH 🙂 ... View more

Hello all you lovely Moonbeams... I have just spent a couple of hours catching up on all your progress. It's heartening to see you all making such good progress but of course dreadfully sad about Karen. I don't think I'm able to say anything that won't sound trite so I won't.   You may (or may not!) remember that I was a Moonbeam (one very long year ago). I was then scheduled for another chemo regime in October and was going to join their monthly thread. As it happens I just didn't and dropped off the site for a while. On reflection, I should've stayed and got the support I needed..... but we live and learn.   Anyway, I've been struggling physically and emotionally but reading how you're all getting on has helped. It's certainly put things in perspective and made me realise I'm being a bit impatient and a bit hard on myself! I had 11 sessions of paclitaxol starting in May then 4 sessions of AC chemo starting in October... (then 20 RT finishing end Feb)  no wonder I'm not back to 'normal' yet 🙂   I'm not back at work yet which I have found frustrating but I have taken on some part time studying to keep the brain going. Patience is what I need I think so I shall be popping back now and then to keep up with you all and remind myself that it WILL be me soon that has some sort of 'normality' back.   xx     ... View more

Afternoon all.... I haven't been on for a while and it's taken me a very long time to catch up with you all 🙂 Lot's of 'ups and downs' I see!   I'm going to be moving over to the October thread now. I had an op in May then 12 weekly sessions of chemo (starting in May :))then another op last month and now I'm waiting for more chemo. Doesn't seem to end!   It's very helpful to see how everyone does manage and get through this... I guess because we all want to come out the other side. I did have a bit of a meltdown last week at the GP's but apart from that I'm coping in my own way as you all are.   I will keep up with you all as you come to the end of your treatments and wish you all the very best... especially Karen who seems to have had everything thrown at her and more    Take care and cyber hugs to you  all xxx ... View more

Evening moonies.... gosh, things are moving on quickly for you all 🙂 I was due to have my 12/12 pacletaxol yesterday but it's been decided I shouldn't have it. One of the side affects is nerve damage which may or may not become permanent... the last couple of weeks the numbness in my fingers, toes, legs and feet has been getting worse and after tests it was decided that the risks of permanent damage outweighed the benefits of having the final dose. Over 11 weekly doses I've had more chemo than someone having one dose every 3 weeks for 4 cycles anyway... so trial or no trial, that's me done with this lot of chemo. Now I just need to spend some time recovering before my op which should be in 4 weeks. I'm exhausted (you all know how that feels) and desperate to get the feeling back in all the numb bits..... Also, I feel strangely adrift 😞 Thanks for the reassurance about the ESA form too, my Macmillan nurse completed it for me, I sent it back with the 'fitnote' from the surgeon and I finally have some money coming in. There are further hoops to jump through but it's ok for now. Will try and catch up with everyone... xx ... View more

Pacletaxol 10/12 Day 3/7 Evening Moonies.... not been around for a while but I see things are progressing for you all. Not nice to be in hospital but glad things have turned out well for you. Holidays???? Plans???? Forgotten what those are 🙂 As I'm coming to the end of this part of my treatment I've been having 'meetings'. Looks like the tumor has shrunk enough for them to be talking about WLE rather than MX which is very good news. So now there's a plan... it's not one I like and I'm not looking forward to it atall but it's gotta be done. Finish pacletaxol Aug 6 Redo CT, MRI scans, ultrasounds and any other tests Surgery week of Sept 8 Recovery??? Then FEC 3/4 sessions starting October? Looks like I won't be 'done' till just before Christmas 😞 Just trying to get my head around it all really. Thought I'd be back at work for November but looks like end of January at the earliest. Does anyone else claim ESA? Just wondering cos I'm self employed and claim contributions based but my Macmillan nurse didn't seem to have a clue about filling in the supporting information on the form for me. She thought it was a private insurance form! Wonder if anyone else has had any issues with claiming anything? I do keep up with you all, just I don't always feel like posting. It's good knowing you're all here though and we all know what each other are going through xx ... View more

Afternoon moonbeams.... Pacletaxol 8/12 day 5/7 Have been awol as struggling a bit still. Think the heat's getting to me! Also, in some silly way I'd almost convinced myself that after this 12 weeks of chemo and an op the most I'd be facing is a bit of radiotherapy then everything would be hunky dory. Think I was also on the way to thinking radiotherapy wouldn't be necessary either 🙂 Silly mare.. just cos I don't want it doesn't mean it won't be needed. Anyway, have now had it well and truly hammered home that it's this 12 weeks, then an op then a further chemo regime. Probably FEC for up to 6 sessions which I'm having trouble coming to terms with. I sooooo want to be 'normal' again, like all of us I guess. I'm stir crazy allready, missing work and my old life... especially missing my financial independence 😞 I know at least I've more chance of having 'life' after this even if it isn't my old life but sometimes it all just feels a bit overwhelming.... I'm sure you all know what I mean 🙂 What do you all do to keep busy? I read, watch crap telly, crochet, knit, see friends sometimes but they're mostly at work..... what I really miss though is just being able to go out for a loooong walk, just take myself out and know I can go as far as I want and get home again! Pft, clearly still feeling a bit sorry for meself ... View more

Morning moonbeams 🙂 Pacletaxol 7/12 day 6/7 Feeling a bit daft today cos I took my steroids for an extra day mistaking saturday for friday 😞 honestly, I'm just not really with it at the moment In fact, I've been feeling really, really flat all week.... I think that's the best way to describe it. I'm just worried it'll spiral into something else given my history of depression but I guess the good thing is that I can recognise the change so keep an eye on it. Maybe asking for a bit of counselling would help? Not sure Apart from that the SE's seem to be kicking in for me.. my skin's really crap, very dry and sore.. especially on my feet and hands. Any my nails are painful with the cuticles getting really hard and sore despite using lots of creams etc since diagnosis. Guess I'll just have to do the best I can for now. Funny thing is, the doctor said my skin and asthma would improve with treatment because of the steroids!!! Pft Teresa, I realise I forgot to answer your question about the trial I'm on for TNBC, I'll pm you later Hope everyone else is managing in the sunshine. It's lovely to have some warm air finally but a bit of a shame I can't go out in it. Still, sunshine makes everything better. Anyway, my afternoon's sorted, I'm off to watch the tennis 🙂 ... View more

Morning all Pacletaxol 6/12 day 7 Been absent for a while, no particular reason just finding everything hard going really 😞 Glad to see everyone managing and some nearly at the end! Thanks for the book recommendation Teresa, I'll be getting that I think. Another book I've found really helpful is the one by Dr David Servan-Schreiber, Anti cancer, a new way of life. It's about making your body/mind as strong and as resilient as they can be for treatment and to give yourself the best chance of not having the cancer return. It makes me feel as though I have some sort of control back. Whether it works or not, who knows? Anyway, tomorrow is number 7 of my weekly sessions. They're going ok, manageable... I've just started steroid moonface though which isn't nice. My cuticles are hard and dry despite working stuff into them several times a day. Mostly things are ok though. My gp gave me a prescription for everything I asked for which was good so I've stocked up on diprobase, corsodyl, dry mouth stuff, indigestion liquid etc withouth breaking the bank. Free prescriptions for 5 years feels like a bit of a bonus prize 🙂 I don't know yet if I'll be having mx or not, if the tumour shrinks enough I'll be able to have a lumpectomy but I do have very small boobs .... I also don't know if I'll be having more chemo after the op or just RT. It's the uncertainty that's getting to me I think. Also, when they found the tumour, they also found another lump in the other breast which they say is a fibrowatsit. Now I'm fretting that they could be wrong, or the fibro could be hiding something and the fact they're leaving it alone could be a bad thing. Am I being paranoid? I think with triple negative anything's possible.... worry, worry, fret, fret... aaargggh xxx ... View more

Afternoon moonies....Teresa, I don't feel so lonely now, I didn't realise you're TN too. Not that its' something to be pleased about of course but I do fret sometimes knowing this treatment is 'it' so to speak. I'm in Sussex so being treated at the Sussex County in Brighton.... weekly paclitaxol for 12 weeks 😞 (on a trial) Anyway, congrats Ann for the new arrival.. yes, we need a name (moonbeam has a ring to it). Glad you're feeling better Karen. Hopefully things will go better from now on now they know your reactions to the treatment. Hope everyone's managing and enjoying the sunshine if you have any. I'm optimistically waiting for a delivery of sun hats 🙂 xx ... View more

Evening moonies Paclitaxol - 2/12 day 7 Coping ok with the side effects... still have my hair 🙂 But struggling a bit with the whole weekly thing. Probably because its another dose in the morning? I don't know, it's good that the doses are lower but weekly seems like a lot right now. Guess I'm very tired. Taken multi vitamins this week but I think they'll take a while to kick in (if they make any difference atall). I've put on weight and just feeling a bit bleurghhhh tbh 😞 Sometimes the whole triple negative thing gets to me, seems a bit isolating in some ways.. Anyway, hope you're feeling better Anne and you're not missing the sun too much whilst confined Karen.... Will be back tomorrow after dose number 3 xx ... View more

Morning everyone 🙂 Pacletaxol - 2/12 - day 4 Getting used to the way the cycle flows and managing to get stuff done. Last week I seemed to be just waiting for SE's, this week I'm just going with the flow. Steriods keep me awake a lot but none tomorrow so there'll be a crash but I know it's doable. Seem to have developed a lovely blotchy rash across my chest this week but apparantly that's a known SE..... as there could be some sun this weekend it'll look like a bit of sunburn! Hair still intact but expecting something to happen when the steroids are finished this time. If not this week then next week for sure. Well done Anne.... the first is the worst in many ways, at least you know what you're dealing with now and you've done it!!! Glad I'm not the only one putting on weight... I was hoping to lose some. I think it's more the inactivity rather than the steroids. I usually do a physical job and walk miles every day. I still go for a walk but an hour a day just isn't enough to keep the blubber off! I guess there's worse things than being a few extra pounds tho eh? My mission for today is to clean the bathroom before the afternoon crash.. wish me luck xx ... View more

Afternoon moonies 🙂 Lovely to catch up with everyone, seems we're all managing ok which is good. It's so helpful when worries or niggles surface and we can come on here to ask opinions from those in the know! Anne, glad you've found some sort of resolution.. I know it's not your preferred option but it sounds like you're coming to terms with it and I'm sure you'll find you can cope with much more than you think. Glad you're feeling better Karen and Marie, that's a look I'll be rocking next week 🙂 I'm having 2/12 tomorrow which has come round very quickly 😞 I'm still blerdy constipated from last week so I'll have to ask nicely for something to help. I also know the effects are cummulative but have been pleasantly surprised as how manageable the week has been. I've been nauseaus but had tables, absolutely exhausted so have done things in short bursts, wide awake at all hours thanks to the steroids and dealt with a bit of a crash. The other thing I think this chemo does is affect your nerve transmissions so some very odd feelings there! Anyway, like all of you I'm making the most of the sunshine... hope you all have a lovely day 🙂 x ... View more

Thanks for the info about the yoghurt ladies.... I guess I'll have to not have my beloved soya yoghurt for at least 3 months 😞 Yep Penny, there's a crash after the steroids. I have to take them when I get chest infections because I'm asthmatic, usually for a 4-5 day boost with antibiotics. They're great when you have them but a nightmare when you stop them. You especially need to be aware if you're prone to depression cos you can end up in that black hole PDQ! Anne, I'm really sorry to hear of your predicament... must be an absolute nightmare. I don't think any of us would choose to be on our own at this time, no-one knows how you'll react till you start your treatment. Have you thought about ringing the helpline or do you have a macmillan nurse you can talk it through with? Would they really deny you treatment if you absolutely had to postpone? I would've thought that ultimately the decision about what action to take or not would be yours. After all, your emotional health is just as important especially now. Big hugs x ... View more

Hi, just wanted to reassure you that the 2 weeks timescale is standard practice, in England at least. And as everyone else says, things do get moving pretty quickly once you're in the system. Yes, the waiting game is the worst part but once you know what you're dealing with (or even better that there's nothing to deal with) it helps. Good luck, you'll get plenty of support on here cos we've all been there 🙂 ... View more

Morning moonies.... second day in a row I've been up at 4am then been unable to get back to sleep 😞 Glad to see things are moving on for everyone. When I'm having a bit of a rough time I just keep telling myself 'everything passes' like some sort of meditation mantra! Seems to help a bit anyway. Can I ask, does anyone know why we can't have 'live' yoghurt? I make my own from soya milk and cos DS is vegan we eat it a lot. I can understand why we shouldn't have soft cheese etc but I thought live yoghurt was good for your gut. ... View more

Morning Moonies... aw Karen, hope you're feeling better this morning. I had a banging headache all day yesterday following my first session. In the end I took paracetamol extra and 2 ibuprofen which is my preferred migraine cure and this morning it's much better. Not usually advised but it was that or keel over 🙂 Dodo, can I reassure you? The portacath was amazing. I'm still very bruised despite having it put in 3 weeks ago but there were no problems. They cleaned the site then sprayed it with a local anasthetic, put in the fittings and we were away. No pain, no hunting for veins.. just bloods taken, flushing, pre-meds, chemo and flushing and done. I still don't like being able to see it under my skin but I'm gradually making friends with it! Congratulations Marie.. I must admit to being a bit envious. Despite having 4 kids there's no sign of any grandchildren yet! I've waited long enough, the eldest is 34... but nada, zilch, nothing. What am I supposed to do when I retire (if that day ever comes) if I can't be a granny? Anyway, feeling much happier this morning now my first session is over. It seems that because my regime is 1 chemo session per week for 12 weeks the effects aren't so instant, more cummulative. I'll definitely lose my hair by about week 3 so that's expected and although I still have to be careful about infections my blood counts shouldn't drop so dramatically as if I were having the higher dose over a 2 or 3 week cycle. Still taking anti sickness meds and steroids though. It's been a great help having others who are going through the same thing, so thanks to all 🙂 Hope everyone else is managing but if not, you know where we are. Take care all xx ... View more