Breast Cancer Now Forum

Jan those are amazing tips, thank you so much, it really, really helps to hear what you've done and I will definitely look into them, I find it's like I know what I should be doing but then I freeze and none of the sensible things come forward, I think I might need to keep a list of options on me at all time as a reminder.  I will work my way through. Thanks SO MUCH for taking the time to share x ... View more

Hey SecondarySister2 Thanks so much for responding, I think you're right, I'm just looking for someone to tell me everything is going to be alright, and nobody can really do that, we just need to find the best way of looking for the positive in every day and trying not to let the negative overwhelm us.  I think that's why I'm struggling as I used to be quite good at doing that and now it feels like it's out of my reach. Its the loss of control on so many levels. I know I can only control how I react to things but the problem is my reaction is bad at the moment 😂 Sending virtual hugs and love back xxxx  ... View more

Thanks Jan. Really appreciate you taking the time to respond and your advice. It's really interesting that it's made you so calm, I was like that initially, but now it's been going on for about 9 months I think it's all just gone out of the window. I don't know if I've read/followed too much social media and am reacting to people having negative experiences on there, there has been a slew of bad news from the people I follow and I don't think that helps. I just seem to go around in circles about - self care, what I should be doing, self advocacy etc. I'm really sorry to hear that you have panic disorder and GAD, I know it's really hard, I have a friend who suffers and we've spent a lot of time talking about it. When my panic rose badly a while ago, I got myself back into counselling, which has helped a bit as it helps me recognise that I'm dealing with a lot instead of just beating myself over the head over and over again for not doing enough/the right things. Do you have any techniques that have worked for you with your anxiety that you could share? No worries if not.  Re your advice:  I did speak to my GP (who I find quite patronising, and if I'm honest am still not happy with as part of the reason I'm so bad is that getting an appointment about my initial symptoms and then getting them checked out took so long) and he was happy with me trying trying therapy first.  Re the oncologist, when I came out of hospital the first time, I did ask my oncologist my prognosis, this was my initial oncologist who has since changed. She said she couldn't tell me a timescale as they just didn't know. I was in a place where I wanted to be positive and asked whether it could be a while and she said yes, everyone is different and it depends on how I responded to treatment. As I've really improved from where I was this made sense.  My new oncologist is more difficult to talk to, so when I ask things like "I'm walking so much better now, is that the bone injections or is it an indication of the treatment working?" he says things like "Ah that's because you're seeing me, hahah, and then waffles a bit about a combination. Maybe I'm just looking for someone to say, it's a good sign and not to worry. I keep seeing people saying things like "trust your body" "you know your body best" - but I feel so different since I've had bone mets I can't tell what is ok and what isn't - when I walk more it hurts more but I think its bound too, especially after being unable to for so long, so how to I work out if I feel its getting worse?  Anyway, that's another brain dump and I'm really sorry for that, very grateful for the forum to allow me the space to do it though.  xx ... View more

Hi Jill Thanks so much for replying I really, really appreciate it. I don't have a secondary breast care nurse, calling the forum sounds like a good idea. xx ... View more

Dear @blondie just a simple thank you - such an inspiring message, thank you so much for sharing and giving us all hope x ... View more

Hi Jo The same thing happened to me I was low for the first few sessions and then they lowered the dose, which I was really concerned about but the doctor said it's better to be regular with the treatment than have the higher dose. My first one with the lower dose was still low and delayed but then after that I've been ok and at 1.1 ish for my neutrophils. My oncologist said that the first month with the lower dose the body is still adjusting, so hopefully your next one will be fine like mine has been. I also found that when I adjusted to the lower dose I've been a lot less tired so will keep everything crossed for you x ... View more

Hi I just wanted to say that I'm on letrozole/palboccilib and I was the same, exhausted at first but tolerating it as so well now. Initially I was v tired, but then I've got bone mets and the time it took to a) get a diagnoses and then b) do all the tests to sort out treatment meant that I degenerated really badly before I started treatment, ended up in hospital with hypercalcemia just before I was due to start - then I was neutopenic every round, until they reduced the dose to 100 which then has meant the last couple of rounds have been good.  My bone mets are extensive but I haven't asked for complete details of where I just know its essentially all the way through the body, but during treatment which has been going on since November, I've gone from not being able to really lift my foot at all due to the pelvic mets, to being able to wobble around the house with no sticks which has just been really positive, so it's definitely worth sticking with.  I know there's a bone mets thread and I don't know if I should really be posting this there, but I saw below about the exercise and thought I'd ask what everyone else is doing? I've been trying to concentrate on walking as much as I can but now I'm thinking I need to do something else but I'm a bit nervous with all the cancer everywhere.  ... View more

Helloooo I just wanted to drop in and see how you are? Did you manage Tuscany camping without melting?  I hope you're ok anyway?  Just wanted to check in and say hi All is ok here, no real news, but fine Sending lots of love and thinking of you anyway xxx ... View more

Sounds like it's been intense - it's horrible when something happens like that and you feel it's the end of everything. Maybe it all just needed to blow up to calm down - sounds like things are a bit calmer now? I guess it will just be something you have to take day by day for a bit. Sounds tough. Sending you a big hug.    On the hot flushes front, I do recommend accuncture if you can find someone but I guess it probably depends on the practitioner too, (I love mine, and it's definitely like getting counselling too!) - what else have you tried for the hot flushes? There are some diet things you can do like diet, avoiding caffiene etc...   Re dog - yes he knows, he just doesn't know what to do. I'm not sure whether that is good enough, but at the same time I feel a bit stuck as well. we shall see xx ... View more

Oh gosh that's a lot going on. It doesn't sound like you're getting too much time for yourself and self care. Promise me you'll do something nice for yourself, even if it's just setting some time to have a bath or read or whatever chills you out. I'm ok thanks. Bumbling along. No periods again and just fat and frumpy and hormone -y really. Have a two friends who are having a few mental health issues and one who's mum's had bc. She had a lumpectomy and lymph out but is skipping chemo and is having radio and hormone treatment so now they know what they are dealing with. I'm going to tak3 her some aloe Vera gel on Saturday as it really helped me. Other than that all has been fine apart from this morning where the dog had wedged the ball on the other side of the kitchen door i tried to stick my foot around to move it so he went for my foot. Which makes me hystetically cry. It hadnt happend for months and i thought it was over and I don't know what to do. My husband says he just does that with balls!! It's making me question everything again. I suppose I'm still I shock.im not hurt as I had my shoe on. ... View more

That does sound weird 're your mum but if she is ok in herself, that's good and you can keep an eye on her. What are the shenanigans? You ok? Xx ... View more

Yes at least we have the sunshine. Hope his grump stops soon. Mine is intermittently grumpy too but mostly just tried and a bit broken. We've seen quite a few people this week and I think instead he could have done with just relaxing. I have a heavy week next week in work so haven't managed muxh in the house this week just haven't felt like it. I am rubbish. Ah well. Now I can just blame it on the bag of hormones x ... View more

When will you hear re  the tests? Hopefully it is a turning point for her and she's on the way back up - it's good that she's being positive regardless eh? I expect you're still worrying though, but there's nothing you can do until you know if there's anything you have to deal with. How's your eldest? Is he any better?  Sounds like you've still got lots going on.  I'm ok, had a real downwood spiral that went a bit weirdly introspective the last few weeks (questioning all my choices, and how I behave and what I do) so that was fun lol - but I think it's the hormone shifts as I had one period in Feb and then nothing since then 😞 anyway, feeling ok now and the sun is shining for once which always makes a difference. I hope that you got some rest and that today goes ok. xxxx ... View more

I'm so sorry to hear that she's so poorly. Keeping everything crossed for you - really hope she turns a corner. Sounds like you're pulling yourself in every direction. I can't believe your new boss has been off sick! It sounds like it's all just piling on. It doesn't help if your body is all over the place - it means you don't sleep which gives you more time to worry about your mum and your son and everything else in between.  Maybe after wednesday things will start to get better and you can take a breath. You're probably so tired all the time because the night sweats wake you up, you've got a heap load of responsibility at work you weren't expecting and you're busy worrying about eveyone else.  Try not to worry about that  on top of eveything else. I was with my friend who's also had BC this weekend (I finished treatment in 2012 and she finished treatment in 2014 so we're well ahead of you and even now we still get tired - it's a lot better but every now and then it all piles up. You've got a particularly large amount on your plate at the moment so it's probably just taking its toll.  Sending a big hug and let me know how you get on on Wednesday xxxx ... View more

Hey just wanted to check in and see how you're doing? All is ok here. I have had one period but now waiting (it's been six weeks) I'm really fat and my body is all over the place but I am generally good. How are things with you? Xx ... View more

Bless your mum hope shes better soon. I'm so glad you're enjoying the job that's fabulous. I'm not sure what's happening here. Need to sort myself out but I've got a weekend seeing family coming up and can't wait. Thst should help a bit. Sending a big hug. Thanks for the advice xx ... View more

How funny I was literally just thinking about you. February has judt flown by hadn't it? Sorry to hear you've had flu. That's rotten. Especially with the new job too. How are you now? Is your heating fixed? I'm ok. Had a rubbish week. It was my dad's anniversary last week and I've been really feeling it foursome reason. Work has also been awful and the two things collided with me ending up in tears which I hate. Not sure what to do really. Also my periods haven't come back but I feel all hormonal so that's odd. Have my info apt shortly so will have a chat with her then. How's your mum? Is she better now? Hope so. Sending lots of love x ... View more

Oh no that sounds rotten bless her. Hopefully she's on the mend now. Must be hard with both her being ill and worrying about your eldest. I'm ok I met a friend from my old job yesterday and we talked about lots of stuff including babies and dogs. I always feel a bit guilty after talking about what's in my head like it's too much if you know what I mean? Or maybe thst I should keep it in. I don't know. Anyway it's Friday hurrah! So glad your job is going well xx ... View more

Working in occupational health shouldn't you be able to ask for a fan? Glad my bobble had made you smile. I often wear my wellies too. My OH says I'm embarrassing (makes me realise how like my mother I am) speaking of which how is your now? X ... View more