Help pls

Hi Netty43

It’s Wayne here from Macmillan’s Online Community team. I saw your post and wanted to offer some support whilst you are waiting for other group members to reply.

I’m so sorry to hear of your son’s diagnosis. I can’t imagine what you and your family are going through. Please know that Macmillan is here to support you every step of the way. Caring for someone who is dying can be an upsetting and emotional time. We have guidance here about what to expect at the end of life, and also information here for emotional support when caring for someone who has is dying.

I would recommend giving our Macmillan Support Line a call. They are there for when you want to talk things through with someone for advice, emotional support and can make sure you are accessing all the support that is available. Our Support Line teams are available 7 days a week, 8am-8pm on freephone 0808 808 00 00. If you would rather speak to them via message, you can also do so on our live webchat.

You can also contact a Macmillan Professional on our Ask an expert forum. Our experienced Cancer Information Nurse Specialists can answer questions about your son’s cancer treatments, side effects and more. Whilst you can also speak to our Information and Support Advisers who are here to answer any questions you might have. They can answer questions about the emotional, practical and financial impacts of cancer. The forum group is open from Monday to Friday. Once you have posted your question, a qualified Macmillan professional will respond within 1 to 3 working days.

I hope the above information is helpful. If you need any assistance using the Online Community or need some additional support, please don’t hesitate to email Community@macmillan.org.uk or send a private message to the moderator account.

Hi Netty43

My heart goes out to you Netty and I cannot begin to imagine how on earth you deal with watching your Son suffering so much.

I wasn't sure if he is in hospital or at home, but my first thoughts are is your Son receiving enough pain relief? I say this after watching my late Partner suffer in hospital in what would be his final week last September. I had an awful time trying to get him the help he needed and for someone to actually listen and understand me. Once the pain relief was increased, my Partner was more at peace and much more comfortable. My Son and I would talk to him, about things we did as a family, places we had been, remembering the happy times. It was so very difficult at the time, but I just wanted to fill his mind with happy memories as a distraction to what he was feeling. We also played his playlist and certain songs he would wake up and be alert just for those few minutes. The important thing is you are there and that he knows you are there, whether that be smell, touch or just talking. 

I have posted on the community forum and found it so helpful. Today was one of my bad days and I went on the forum.. There are so many people out there and I realise I am not alone and neither are you. Please reach out when you need to.

Hi Netty43

I am so sorry about your son. I lost my daughter just over 6 months ago from synovial sarcoma, also aged 23. It is the most awful, heartbreaking thing. It does sound as though your son is not receiving the correct pain relief. My daughter had the help of local hospice nurses who sorted out her pain medication and liaised with her gp to make sure she got it. Is there a hospice local to you that your son could be referred to, they seem to be experts on pain relief. Hope you manage to sort something. Meanwhile just let him know you are there for him.

Affie

He is under hospice and has district nurses come in daily. He has a syringe driver but it lasts a day then needs upping but hes refusing injectable because he doesnt like how it makes him feel. I wish I could say just give them to him so his pain eases but I cant. He's in the final stages now they believe maybe a few days

Thank u for the reply.

His hospice and district nurses are doing all they can as he's wish is to stay home and pass here

Hi nety43. My husband chose to die at home and the hospice were very good. Those final days are hear wrenching especially if they are suffering ( my hubby was beghing to die at the end). Please try to not be alone if this is possible. Just talk, be with him, share memories if he can hear you and tell him how loved he is. That is all you can do. 

We are many here when you need to cry, vent, express yourself and I wish you strength at this awwful time. 

X

Hello Netty43 I will be thinking of you and your Son in my prayers x