Not getting much info....

Hi all,

Mum is 91 and has had a lot happen over the last few months/weeks. She had breast cancer 17 years ago. It came back about 3 years back, and broke through her skin, so she has lived with a cancerous, slow growing ulcer which is now about the size of a tennis ball, and is bandaged to stop it bleeding etc.In Aug 16, she got a lump on her neck, just under her jaw bone. This was confirmed as secondary cancer, and seems VERY agressive. In 4 months it has grown to the size of a golf ball, and has also become an open ulcer wound which weeps and bleeds slightly. Due to her frailty and dementia, treatment was not really an option, so she has been getting palative care. Over Nov/Dec things got really bad. She kept forgetting why the district nurses were putting bandages on her neck and breast, so would remove them, and then they bled, causeing a number of rushes up to A&E to sort things. This all came to a head just before Christmas, when she was fast tracked by the NHS into a nursing home. The neck had been causing her real pain, and the local hospice is now involved with her care/pain relief, in conjunction with the nursing staff.

I appreciate that due to her remarkable age and illness that she probably doesn't have long left, but no one is really being straight with me. The NHS will do a review in a couple of months time, to see if she still requires the CHC Funding and nursing care. I am sure that will be the case, but no one will commit to saying that. A hospice member told me she will probably 'not be in a good place' in 3 months time, but again, no one has directly told me this is terminal, and given an extimate of how long she might have left.

I could really do with just being given some straight answers, as I feel that will help me cope with this terrible feeling waiting for the enevitable..... 

  • Hi

    I am very sorry to,hear this about your dear mother, my heart goes out to her and yourself. Bless her she must be wandering what is going on. 

    Is your mother under a oncologist ? Or a medical team within the home/hospice as you have a right to ask for a meeting with the care team and ask for more information and planned care.you can also ask to,be the main contact person for any medical update.

    My thoughts are with your mum and yourself during this time.

    stay strong and please update

     take care

  • Thanks for your reply and kind words Duchie,

    She isn't under the hospital as it was all just too traumatic for her what with the dementia as well. I am now however in contact with a lovel nurse from the hospice, who is visiting the nursing home she is in each week, and advising the nurses there on treatment etc. She has given me an update; although to be honest even though I knew this was bad, it has hit me a bit more than I expected. The ulcerous wound on her neck is now very large, and the hospice nurse says it is the worst she has ever come across. It is starting to eat into the jaw bone and nerves and the creator it has left you could fit an apple in. Sorry to be so graphic, but I actually gasped when I saw her on Saturday as it was uncovered, and it looked so awful. They have put her on 4 hourly liquid morphine to try and keep the pain under control more. I cannot beleive that she is still managing to get up and dressed and move about the home with all this. I have been told it will be a 'few short months' at most, and at some point the amount of morphine they are giving will hit her, and she won't be as mobile as she is now.

    I thought I was coping with it all; starting to sort her house and dealing with the authorities about her pension and benefits etc,  but I am beginning to struggle to hold it all together at home now. Being 120 miles away means I can only get up every other weekend. I cannot stop work to stay for longer, as my husband has been unemployed for 6 months, so I am the only one earning at the moment. And my daughter is in her final year at school, taking her A Levels in the summer!!

    Is it awful that I just hope my mum doesn't wake up one morning soon, so she doesn't have to endure any more pain.....?