Hi - mum with SCLC in honeymoon phase

ngd051111 6 years ago

2 replies

Hello, My mum was diagnosed with SCLC September last year and was immediately put onto Platinum chemo, which gave her two heart attacks. She then moved on to another chemo to protect her heart which gave her a stroke. Her prognosis went from two years, to one year to less than six months very quickly.

Her cancer is now chemo resistant, she has had a small amount of radiotherapy to stop the tumour pressing on the superior vena cava which takes the deoxygenated blood from the top half of your body and passes it back through the heart to be recycled.

Currently in the 'honeymoon' phase she is up and about, going for lunch and visiting places with her friends, feeling great and looking fantastic. Long may this last. Therefore however she is reluctant to be involved in palliative care, as she feels she is not at that stage yet. For me it would be good for her to meet people, form relationships with them so that when she has a crisis and starts to get unwell its not a stranger coming into the house or looking after her. They would know her idiosyncrasies, and how to take care of her the way she should be. I would also like to meet people as at that point I would be with her most if not all of the time, so its important to me too.

I love her dearly as does my brother (lives in Australia - poor thing) and the rest of the family and her friends. She has a great support network and would not need to go into the hospice as a resident until the very end I hope, but we just don't know.

I am going to suggest she visits and looks at some of the complimentary therapies available as day treatments and hope that we can make an introduction that way and she can attend when she wants to. Her life is still her own and she is fiercely protective of it just now.

Support 6 years ago

Hello ngd051111,

I am sorry to read about your Mum’s condition. It is pleasing for us to hear that she is continuing to do things that she enjoys and is feeling well in herself.

It’s also lovely to read that your Mum has a good support network around her, and I’m sure this is reassuring for you too, however it is understandable that you would like to forward plan her care needs so she can begin to become familiar with meeting the people that may become involved.

Any care Mum needs (practical help and possibly our nursing services) will only normally be allocated at the time when she needs it, therefore, it would be unlikely that she would be able to meet some of the Healthcare Professionals at this stage. However, her GP, District Nurse, and Specialist Nurses which she is already aware of, would be involved in her palliative care, so I hope that this is a little reassurance for you. Normally, a referral for any Hospice would be made via a District Nurse or GP. You can find further information about palliative care on our website. I have attached a link to this:  https://www.mariecurie.org.uk/help/support/diagnosed/recent-diagnosis/palliative-care-end-of-life-care

Your suggestion of visiting a hospice to see what treatments they have to offer sounds like a lovely idea. Hospice services have evolved over the years, and it can be good to have an insight into what they can provide. I have attached a link to an organisation called Hospice UK where you can search for local Hospice Services on their website here: https://www.hospiceuk.org/about-hospice-care/find-a-hospice   

Our Freephone Support Line is available Monday to Friday between 8am and 6pm, and Saturday between 11am and 5pm, we provide information, emotional support and a listening ear, so if you, Mum, or any other members of the family feel that we can help, please do give us a call, or you can use or webchat facility. If your brother in Australia would also like some support, he can ring us on +441204 449285

Best Wishes

Nikki

Marie Curie Support Line Team

ngd051111 6 years ago

Thank you so much for your response and your links. Mum is adamant that she is not ready and I am not going to push it. I am grateful for you and your services - an amazing job by amazing people.