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 and sometimes seems to not understand why he has a tracheostomy and wants to pull it out.. 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 Amy, It all sounds so awful. I guess your brother isn't well well enough to be discharged into hospice care where he will be more comfortable?
You could approach PALS as well https://www.nhs.uk/nhs-services/hospitals/what-is-pals-patient-advice-and-liaison-service/
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
Hello- thank you- no, he’s not had a cancer nurse as far as I know. I will look into that and into PALS.
wishing you a radiant new year 
I think that having him home, in care of the district and hospice nurses, will be the best.
I really hope he is home soon. Hugs
Dani
Base of tongue cancer. T2N0M0 6 weeks Radiotherapy finished January 2019
