Thank you for posting.
It sounds like you are having a really difficult time with secondary breast cancer. It can be hard to know where to turn to for support.
Everyone diagnosed with breast cancer should have access to a specialist breast care nurse who’s there to provide information and support. Some people will have a secondary breast cancer nurse specialist.
The specialist nurse or your GP can usually refer you to other professionals and who may be able to help in providing you with more effective pain relief which aims to manage your cancer- related pain and improve your quality of life.
If your pain is not under control and affects your sleep you may benefit from the advice of palliative care experts, they specialise in pain and symptom control. You can be referred to the palliative care team through your oncologist specialist nurse or GP. Many people find that once their pain is under control, they feel they can sleep better without waking in pain and are able to be get out and about more which improves their quality of life.
For some people a referral to an occupational therapist can be helpful as they can assess how you are able to manage daily activities including sleeping. They can also request practical aids that can be supplied through social services or voluntary services, for example chairs or beds. There are voluntary services, such as the British Red Cross and the Carers Trust who may also provide practical aids in many areas. Your specialist nurse, GP or local cancer centre may be able to tell you about other sources of practical support as well.
Our secondary breast cancer information pack has a list of useful organisations and charities which may also be able to help.
We provide a number of different services for people living with secondary breast cancer aimed at providing both information and support.
Our helpline team are here for anyone diagnosed with secondary breast cancer. They have time to listen to your concerns, talk things through and/or signpost you to more support and/or information.
At times like this, some people find it helpful to talk with others who are going through a similar experience. We have a secondary breast cancer online discussion forum for sharing information and support. There is also a weekly Live chat session which runs on Tuesdays at 8.30-9.30pm.
Both services allow people to talk over their experiences and offer support to each other.
Our face to face Living with Secondary Breast Cancer monthly sessions also give you the chance to meet and share experiences with other people who understand what you’re going through because they’re going through it too.
In a safe and relaxed environment, our regular sessions provide information about all aspects of living with the disease, as well as the chance to meet and talk openly with other people with the same diagnosis. Each support session is led by a qualified therapist with group facilitation skills and relevant counselling experience.
You’ll hear from expert speakers about a range of topics such as pain management, side-effects, fatigue, clinical trials and benefits, and have a chance to ask questions. There’s the opportunity to find out about other available support and services too.
People are welcome to attend as few or as many sessions as they wish. Refreshments (including lunch at longer sessions) are provided. You can search for current locations dates on the above link or you can call 0345 077 1893 for more information.
We often find we can help people more by speaking to them on the phone. Your call will be confidential and the number is free from UK landlines and all mobile networks.
The number is 0808 800 6000 (Text relay prefix 18001).
Our usual opening hours are Monday to Friday 9am to 4pm and 9am to 1pm on Saturday. Out of hours you can leave a message and we will call you back when we next open.
Thank you for contacting us. Please contact us again in the future if you have any further queries.
Breast Cancer Now Nurse
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Thanks for posting your question.
We hope to be able to respond to you tomorrow.
In the meantime our Helpline is open from 9am tomorrow if you would like to talk things through.
If you do phone our Helpline please let us know that you have asked a question on our forum so that we know your query has been answered. Thank you
Sorry we weren't able to respond today.
With best wishes.
Ask Our Nurses Co-ordinator
I have recently been diagnosed with secondary breast cancer, from the skull and all the way down to my right femur bone. As a result I am battling daily pain, largely on the lumbar spine and its very uncomfortable wrapped up in the nerve endings around the abdomen. Luckily, with a strict painkiller routine I am getting there but it often means I am loosing my quality of life as I need to spend large hours of my day lying down to rest the spine.
There seems to be a-lot of help and support out there, for special days out and nice things, but I am struggling to find any support for anything I am desperate for.
I applied for a MacMillan grant and to my relief I was able to get a recliner which enables me to sit downstairs, for some hours of the day, which takes the pressure off my spine.
I am loosing alot of sleep due to pain in the nights, my mattress is awful even though we have a topper. I looked online for a mattress and its an absolute minefield which costs in the hundreds... Is there any charity, or help or anything which would be able to help/advise my situation. I just want to be able to sleep without waking up in pain :(.