Just joined

Hi and a very warm welcome to the online community

I'm so sorry to hear that you have only recently been diagnosed with breast cancer and that you've also learnt that it has spread to your lymph nodes and spine.

The community is divided up into cancer specific groups so could I recommend a few groups for you to join so you can ask questions, share experiences and get support from others who will understand what you're going through. 

The first is the breast cancer group and then I'd also suggest joining the secondary bone cancer group and the secondary lymph node group.

To join any or all of these groups just click on the links I've created and then choose 'join this group' on the pages that open. You can then introduce yourself and post questions after selecting 'start a discussion' and join in with existing conversations by clicking on 'reply'.

Thank you very much for taking the time to complete your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself and you can amend it at any time.

I noticed that you have said in your profile that your cancer is incurable so you might want to join the living with incurable cancer group, although I'd understand if you feel that's a step too far at the moment. The group is unique in that it is only for people with incurable cancer so you can discuss your feelings openly amongst others who are also incurable. 

Please don't be put off by the title of the group as they discuss all sorts of things including gardening and baking and don't just talk about cancer.

If you need any help finding your way around the site just reply to my post.

Sending a big (((((hug))))) your way.

Thank you not sure what I'm looking for or feeling/thinking at the moment I've just been refered to the site

You don't need to post anything until you're ready

When I first joined I spent a few weeks reading what other people posted before I felt ready to post myself. There's no rush, but hopefully you'll find lots of welcoming people who will answer your questions and share their experiences with you.

Feeling as you do is perfectly normal when dealing with cancer and you might want to have a look at this section on cancer and your emotions.

If you feel that talking to someone would help then I can recommend giving the Support Line a call on 0808 808 0000. It's free to call and is available every day of the week from 8am to 8pm.

I'm off to bed now but will be around again tomorrow. If you can't sleep there's nearly always someone around on the awake thread in the breast cancer group to chat to.

Night x

Hi

I just thought I'd check in and see how you were doing this morning.

I can see that you've joined the secondary bone cancer group and already had a lovely reply. 

I must apologise for missing off the most obvious group for you to join when I spoke to you last night and that's the secondary breast cancer group. They have a great thread running called 'positive secondary breast cancer stories' which you might like to take a look at.

x

Morning didn't have a good night sometimes the pain doesn't  allow sleep managed to drop off about 9 this morning.... Thank you will have a look at that one...

Sorry to hear that you didn't get a good night's sleep due to the pain you're in. 

Have you spoken to your team about this as I'm sure they'd want to get on top of it and wouldn't want you to be in pain? They could also refer you to the pain management team if necessary.

x

I had a phone consultation with oncologist not my usual one on the 28th April & was told to just take more morphine & they will call back in 6 weeks 

I've not been in your position regarding pain but the response you had during your phone consultation doesn't sound the most helpful.

Could you give your CNS a call as they generally have more time, and sometime more empathy, than consultants and might be able to sort something out for you? Alternatively, could you speak to your GP?

You could also start a new post in the secondary breast cancer groups asking people there make sure they get the right pain relief.

x

I've introduced myself on a couple of sites no response just yet but I will ask..... Getting hold of anyone to talk to at the minute is hard..... I'm usually quite active go to the gym usually even thou I suffer badly afterwards I don't know if all my extra pains, aches & pins & needles in arms & legs worse at night is because of tumours pressing down or lack of excercise... When I last saw oncologist in March he asked if i was gett ing points & needles & I wasn't then 

Hi

You have had a couple of replies to your first post in the secondary bone cancer group. Clicking here will take you to them.

I agree that trying to get hold of someone to talk to can be tricky but if I leave a message for my CNS she does reply within 24 hours. As they're currently not seeing patients face-to-face they should, in theory, have more time to speak to you. That's assuming they haven't been posted to the front line of course!

x