When a loved one has incurable cancer, it is natural to feel a range of emotions and need some additional support. Our Supporting someone with incurable cancer forum is a safe space for you to talk about the practical and emotional needs you have, alongside connecting with others in a similar situation. If you are looking for some additional support, or want to catch up with the recent activity in the group, this blog will be a helpful source of information.
An incurable prognosis can come as a shock and take time to process. During this difficult time, members post about the mixed emotions they feel when coming to terms with their loved one’s diagnosis. You’re not alone if you are struggling, there’s a friendly support network of people coming together to offer a listening ear and guidance from their own experiences.
“I hate that anyone is going through this but thanking you for reaching out because it feels so lonely sometimes, and when I speak to others who absolutely get it and get how I feel and think, I feel a little less alone.”
Community member, Supporting someone with incurable cancer forum
Recent posts in the Supporting someone with incurable cancer forum.
Recently there’s been conversations in the Supporting someone with incurable cancer forum on topics like finding practical and emotional support, to coping with anticipatory grief, making last memories, and handling difficult conversations about the future. Below are some of the recent posts and conversations where members talk about their personal experiences, ask questions and offer support to others. Click the discussion links to read the full conversation.
Anticipatory grief
It’s not uncommon to start grieving for your loved ones and the life you anticipated together, before their passing. Our Coping with anticipatory grief when you’re supporting someone living with cancer blog explores the personal experiences of anticipatory grief. Click the blog title to read more.
“I’m grieving for someone who is still here. I so want to get out of this nightmare. I’m so sorry. Thinking of you x”
‘I’m not ready’ discussion thread, Supporting someone with incurable cancer forum
“I’m not ready to lose my Dad. I’d always imagined that he would be around to walk me down the aisle or to be a grandad to my future children one day. It breaks my heart to think that he won’t be here for those experiences. I’m trying so hard to be strong for him and to support my Mum, who is understandably totally devastated. I have no idea what to expect as we journey into this next stage. I’m trying to prepare myself as much as possible so that I can provide the best support to him and my Mum.”
‘Anticipatory Grief - Not ready to lose my Dad’ discussion thread, Supporting someone with incurable cancer forum
Making lasting memories
A few months ago we published a guest blog ‘coping with the last celebrations with your loved one’ which may provide some comfort and reassurance. If you are feeling worried about making memories and celebrating what could be the last celebrations and milestones, you are not alone.
“My partner is end of life care at home now and I know my birthday next week will be our last together. We have done everything together for the last 18 years just need support, please. I'm grieving already and finding it hard to cope.”
Last birthday I’m just not coping discussion thread, Supporting someone with incurable cancer forum
“My advice would be to not dwell on it being your 'last' if at all possible, and just make it as happy as you can be - do what you want, don't do what you don't want. Make the most of the time together and when you look back, you will do so with fond memories.”
Last birthday I’m just not coping discussion thread, Supporting someone with incurable cancer forum
Accessing financial and practical support
If you have questions about accessing practical and financial help alongside arranging care at home, the Macmillan Support Line teams can help. These members had questions about how much caring support at home would cost so if you are in a similar situation, please do call 0808 808 00 00 for free. The helpline is open from 8am to 8pm every day and there's also an option to send an email or use live webchat during the opening hours.
“My husband has been given just weeks. Lots of support has started and today adult social care got in touch. They are going to come and help twice a day, especially with his stoma. Anyway, the lady said she hoped to get funding for it as it is medical, not social, but we may have to pay. He is only 51. Whilst I will find the money, I have no idea how much. What sort of costs is having a cater twice a day to do personal care and change the stoma etc likely to cost?”
Community member, ‘Carer’s helping’ discussion thread, Supporting someone with incurable cancer forum
“My mum is receiving palliative care at home. MacMillan sorted out something called attendance allowance which she is receiving weekly I believe, and all other care so far has been free due to it being medically required and not socially. We have a central contact number in our county for care, which is then managed by different people, but includes equipment, palliative / community nurses, occupational health nurse and carers.”
‘Carer’s helping’ discussion thread, Supporting someone with incurable cancer forum
A place for difficult conversations
Posting about how difficult conversations are impacting you in the Supporting someone with incurable cancer forum is something we often see. A member recently shared how stressful this conversation is whenever the palliative care team visits.
“One thing that we’re finding particularly stressful is whenever the palliative care team visit (usually once a fortnight), they insist on talking about my dad’s ’wishes for the future’.”
‘Being pressured to discuss ‘the end’ discussion thread, Supporting someone with incurable cancer forum
When a loved one has incurable cancer, healthcare professionals may start to have difficult conversations about what your loved one’s personal wishes are. This could be for resuscitation and other interventions. As important as these conversations are, they can be difficult to hear and be a part of.
Having these discussions early means that when the time comes, the palliative care team and other health professionals know how to support you and your loved one. To avoid repeating these conversations, you may wish to use the ‘Things that are important to me’ guide which you can fill in and share with any new or different health care providers.
Additional support resources
We hope the above information can be useful and that you'll consider posting in the Supporting someone with incurable cancer forum when you need some peer support. If you'd like to provide some advice or guidance which has helped you in the comment box below, I am sure those who read this blog will find it helpful.
