Hi all

Really just after a bit of support/offload i suppose after a whirlwind 11/12 weeks.

My 53 year old sibling has stage 4, poorly differentiated tonsil cancer, and surrounding soft tissue, which also has spread to a lymph node in neck, resulting in a large tumour there This is wrapped around the main artery in neck. Its inoperable and also radiotherapy not advised, as cancer extensive. She may have had the cancer a while internally but never complained of pain. 

My sister has a form of schitzophrenia, living in supported, (but not care) housing for quite a long time, with our close family support also..getting the diagnosis and cancer care right  been a difficult/delicate process, as her condition now she is older,  almost presents as learning difficulties in some ways and concentration can be poor. I think professionals have found it difficult also in terms of her capacity. Consultant was gentle with her and he told us seperately she had short months to live. 

We only noticed  something wrong initially, when an egg size lump in neck seemed to suddenly appear, which grew and changed rapidly and from then on weight loss has been very rapid. It took about 8 weeks from finding the lump to get to full diagnosis stage and about a week after this she moved to hospice, as she was deteriorating by then and not eating, so her home wasnt right place for her anymore. She has been in the hospice under 3 weeks.The hospice/staff are amazing..im so thankful for the fantastic care and she seems comfortable and to feel safe 

The consultant in hospice has told us now she may be around in a months time, however he presented as thinking this unlikely and has told us to 'prepare' ourselves saying she is frail and things can change quickly.  

I find it hard and sad as she is not asking questions, about end of life and although the consultant  have told her she wont get better, she doesnt seem to know, or maybe acknowledge she is dying. 

I have 2 children and a busy job but over the last 2 weeks i have been slowly coming to a full stop and struggling as I have been heavily involved in process Her care has been a combination of persuasion at times for best interests and acknowleding and following her wishes. Although it was myself and parents who were asked about resusitation and not my sister if main artery ruptured.  She has refused a syringe driver but now has pain and anti sickness patches on which is a relief. She still needs mental health drug, but has had some sickness and missed doses at times.

She continues to lose weight. Has days eating nothing and fluids are very low. Urine output low. Eyes are dull. Last half of this week she has been lying in bed, rather than sitting on her couch and had some naps but at other times presenting as asleep but she is actualy awake. She seemed in low mood today and sad and is very distracted. Unsure if mood or mental health deteriorating. She doesnt always say if she is in pain.

Im finding it hard not knowing how long she will be with us days,weeks. suppose im asking does it sound as if she is failing fast? If you are told to prepare is there a chance it may be very soon?, i know you cant answer this 

Ive taken a few days special leave from work and boss has been great.. but am thinking of getting a sick note after this, as i have a very responsible job, but im totally distracted and making mistakes, not sleeping well and want to visit all time, as im anxious something will happen and im not there. As im never off work unless physically ill, im struggling to not feeling guilty if i do this this also!!. But im realising i need time off.

Sorry for long post. Its been a tough 11/12 weeks and since the hospice consultant gave some sort of timescale, think ive finally let myself slow down and acknowledge what will happen soon and i have been feeling very sad last few days. I knew before diagnosis she had cancer..it wasnt a surprise ...just i probably  havent accepted she is going to die soon  

Thanks for reading/listening.