Help and support

Hi Dawn50 

I'm sorry to hear about your mum's diagnosis and subsequent physical disabilities. It is difficult for me to know what kind of support you require therefore it may be best for me to tell you of my experiences and some background knowledge I have gained. I should point out though that there can be regional differences in healthcare.

I was diagnosed with cancer in January 2022. I was assigned a Macmillan Specialist Nurse, known as CNS (clinical nurse specialist). When I was staged at stage 4 she referred me to a Macmillan welfare rights officer and she applied for benefits for me as well as I mobility blue badge. Does your mum have a CNS? They are based in a hospital. If you are unsure, could it be worth ringing your mum's Consultants Secretary for advice, their number will be on any hospital letters that you have.

Are you looking for help in caring for your mum? Do you need carers going into her home? Do you need a wheelchair to take her out? These services are usually arranged by her GP or district nurses. It may be an idea to arrange for a GP home visit so that you can discuss what you need as a family.

If I have not met expectation with these suggestions it may be an idea to ring the Macmillan helpline to ask for advice, this is the link to contact https://www.macmillan.org.uk/about-us/contact-us

I hope that you find the support you need in looking after your mum. Best regards

A x

Hi Dawn50

so sorry to hear about all that is going on with your mum.

I am supporting my husband through his Glioblastoma journey, He was first diagnosed in Sept 2020 and we moved into the palliative care phase at the end of Feb this year. The oncologist did a warm handover to our GP who put us in touch with the local community nurses and the local hospice. I'm sure if I had asked, he would have put us in touch with MacMillan too. Since the start of March the community nurses have called once a week to check if we need them and the nurse from the Hospice has called every couple of weeks and popped out every 4 weeks. That was all the support we needed until a couple of weeks ago when things started to deteriorate.

What has stood us in good stead over the past week in particular was that the relationship was already there with G and they could see the changes/decline. 

I would advise reaching out to your mum's GP again and trying to get something set up so that the support network is there for you, including the support of the MacMillan nurses. if that fails as sistermoon says, reach out to MacMIllan direct for some guidance, The Helpline number is below

Please also remember that you can reach out here anytime. This is  safe and supportive space. You're not alone. We're here for you.

For now though I'm sending you a huge virtual hug and lots of positive energy. Stay strong,

love n hugs

Wee Me xx

Thank you so much for the information provided. When mum was first diagnosed we did receive a call from a lady who did sort out her claiming attendance allowance and sorted out her blue badge. I genuinely don’t know if it was a nurse or not everything was a massive blur at the time and I was an emotional wreck. Adult social services have been a tremendous help but I just felt mum could do with some support from someone who truly understands what she is going through. We as a family are there for her and will do what we can but sometimes she is just so angry that us who are closest get verbally attacked and that is so hard to deal with when we are all trying so hard to make her as happy and comfortable as she can be under the circs. The GP did put a referral in to a local palliative care team. I have to be honest when they called me I was genuinely shocked with the ladies attitude. She basically said we have received your referral about your mum. The GP states the main thing for her at the moment is emotional support. I stated yes that is part of it her reaction we don’t provide emotional support we will deal with the treatment side of things, so she then informed me she was closing down mums referral and if I needed help In Relation to treatment to call back. Let’s just say I won’t bother them again her attitude was awful. X

Thank you so much for your kind words. I have only been in this forum a very short time but the support from others going through similar has been absolutely amazing, informative and the genuine care from people has given me hope when I’ve felt so alone. I never realised the impact that something like this has on a family. It’s hard mentally, physically but yet we all somehow manage to push through it.    I wish I could fix this but I know I can’t but knowing I have others to chat with and ask for guidance is massive for me. I just want to wish you all well on your own individual journeys and thank you for all been so supportive to others whilst dealing  with your own situations. I will make a call to the Macmillan help line. X