macmillan support

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Hi I am new to the group and just after some advice. My mum was diagnosed with stage 4 glioblastoma brain tumour on the 22nd October 2021. The prognosis was not the best however beyond all odds she is still with us and doing all she can to stay positive. She has lost the use of her left arm and has mobility issues with her left leg due to having a bad seizure which left her with this disability. She has over the last 3 weeks also had to deal with cellulitis which had really limited her mobility so much so it is a two man job just to transfer her from bed to commode to chair. I have had latest results from last scan and have been told today that the tumour is looking slightly better than the last scan it is still stable but they have found a small anomaly above the original tumour which they wIll keep an eye on. She is doing so well under the circumstances. My main question is how have people been introduced to macmillan services/ support? I have been informed by the cancer nurses that the GP should be dealing with this but as yet We as a family have not spoken to macmillan. The GP did put in a referral to palliative care they rang me but they were no help at all and have removed mum from there records and told me to get back in touch if she is at a stage where they can assist. My best friend has been recently diagnosed with terminal lung cancer and she has been assigned a representative from Macmillan who is assigned to her should she need anything and this is within 2 weeks of her diagnosis. I’m just confused how do I go about speaking with someone who can guide us as a family through this terminal illness. Any advice would be appreciated.

Hi Dawn50 and welcome to the Macmillan Community but so sorry to hear about your mum abd the challenges you are having.

I have no first hand experience in this but from reading many post on the Community most people say that it is up to the patients GP to make the referral for Palliative Care be it with Macmillan or other organisations.

This is such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' support challenges can help a lot.

The Community is actually divided into Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting family and friends you may benefit from joining and posting in our Carers only and Supporting someone with incurable cancer support groups where you will connect with others navigating the exact same support challenges.

To connect with a group click on the “Bold Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)

You can then put up your own post when you’re ready by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post. You can also scroll through other members posts and click “Reply” to get involved.

It’s a challenging time for you so you may want to use the Macmillan Support Line is open 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00. This service provides cancer information, practical information, emotional support, benefits/financial guidance or just a listening ear.

Do get back to me if you need further help navigating the community.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

Dawn50 over 2 years ago in reply to Thehighlander

Thank you so much for the guidance I am so new to this but am hopeful I may get the help and advice I need from people who are going through similar circumstances.

Thehighlander over 2 years ago in reply to Dawn50

It is difficult to navigate. I have been on my incurable cancer journey for over 24 years and even now I am still learning about the cancer journey.

I see you have joined theSupporting someone with incurable cancer Group, you will get great help in the group.

I do know that the availability of care and support not only from Macmillan but other care charities is not guaranteed in every area of the UK…… In the Highlands where I stay….. some areas have no face to face support available…… I wish you all the best with supporting your mum.

Mike (Thehighlander)

It always seems impossible until its done - Nelson Mandela

My cancer story

Dawn50 over 2 years ago in reply to Thehighlander

Already I feel part of a community and I have only joined this group within the last couple of hours. Everyone on here either dealing with having cancer or supporting someone with cancer but you find the time to give guidance and support to others. Thank you so much and good luck with your journey x