Hello,
I’m new here. My brother was diagnosed with laryngeal cancer in August. He was not far into treatment when scans showed that the tumours, which were limiting his speech, were not responding to chemo and causing blockage in his airways. In late October, he needed an emergency tracheostomy. He’s not able to speak at all now and it appears that his hearing is also affected. Communication is really challenging. The doctors decided not to continue chemotherapy , but instead gave him one radiotherapy treatment and released him into palliative care. After a few weeks at home without any health visitors, he had to go back to hospital due to breathing problems. They detected an infection and started antibiotics. Over Christmas, care in the hospital was very stretched. His basic needs seemed to be overlooked abd he got further dehydrated- is still in hospital- now with sepsis, UTI and AKI. He is very disoriented- not making much sense (we communicate a bit through writing) and generally distressed and depressed. His wife is the first point of contact, but seems to get very inconsistent information- neither of us fully understand what is going on and my brother seems totally in the dark- confused and agitated much if the time. I am doing my best to support them both but live 4 hours away and can’t be there all the time. But it feels awful to leave them to come home- I feel so sad and helpless. I feel like we aren’t accessing the information we need, or navigating the system effectively. We know that the nurses are stretched but basic care seems to be overlooked.
thanks for listening.
Hi Amy1234 and welcome to the Online Community but so sorry to hear about your brothers diagnosis.
A cancer diagnosis like this in the family can be such a challenging and stressful time but I do hope you will find the Community a safe place to get support and to ask your questions.
The Community is divided into support groups (discussion rooms) and I do see you have already joined our supportive Head and neck cancer support group. This is a safe place to talk to others who may have a similar diagnosis and treatment experience, to ask questions and get support from family members who are navigating the same journey.
If you'd like to connect in with a group click on the (Bold) Group link I have created above then once the group page opens you can then introduce yourself by putting up a ‘new post’ by clicking in the box near the top right with + New or + (Depending on the device you are using) and you are ready to go. You could copy and paste the text from this post into your new post
When it comes to the practical and emotional challenges of supporting family you may also benefit from joining our general Carers only and Supporting someone with incurable cancer support groups where you will connect with others navigating the same support challenges.
The Macmillan Support Line is open from 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00 where you can talk with someone about specific cancer and practical information, get emotional support, benefits/financial guidance or just connect with a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and aim to give support to all the family.
Please do get back to me if you need further help.
