Palliative Care update pg 7

[Princess Ariel]

I’m not sure if anyone can help me. As many of you will know my mum was diagnosed with stage 4 advanced vaginal cancer 2 days before Xmas. The cancer had already spread to her bladder, urethra and ≈≈≈≈ passage and her lymph nodes. All her oncologist would say is that she had ‘up to two years’ to live. She managed one course of chemo but couldn’t face anymore. She has currently been in hospital for the last 9 days, she has what they highly suspect is an ulcerated tumour in her genital area now. They have fitted her with a catheter as she has been unable to pass urine due to the pain. She has signed a respect form to state she only wants pain relief and to be kept comfortable.
I spoke to the palliative care nurse today who was lovely and helpful, she stated that mum is currently prescribed 45mg of Long acting Oxycodone twice a day and 50mg pregabalin twice a day for her pain, this is still not holding her and she is requiring more oxycodone during the day. (She has an allergy to morphine)
I asked about a realistic prognosis, all she would say is that we are looking at the ‘shorter side’ and that she is concerned about Mum’s deterioration and that the fact it is taking so long for her to respond to pain management is a ‘red flag’. She said Mum is weak and frail.
They are considering hospice care but as Mum has been adamant she wants to die at home the nurse is discussing this at length with her and suggested we discuss this as a family to see if we can support this.
I have taken all of this to mean the end is probably near and we are looking at weeks at best…... however my dad still seems convinced mum has about 6 months left?!
Does anyone have any experience of this? It’s so hard, we don’t live close by and are trying our best to support her and Dad but we are so unfamiliar with all of this.

[Bootrip2]

Nothing to say that might help, just sending you hugs. Xxxx

[Ciano]

Am of no help but just wanted to send a big hug. Am thinking of you x

[sully301]

If they feel that she has a short time then they can apply for fast track funding for her. This will pay for care. They can also give an out of hours contact in case of any problems. Sometimes teams caring for people find it difficult to talk honestly about prognosis for fear of upsetting someone. Does she just have the district nurses or are Macmillan or St Barnabas involved?

[Mary A]

Do you have hospice at home in you mum's area?

[DFussy]

Have they talked about what kind of outside support they could help your family with if your mum stayed at home. My mum is a member so she may see your post and reply with more detail but i will pm you an outline of our experience.

Best wishes to you and your family at this terrible time. D

[Princess Ariel]

Originally Posted by sully301

If they feel that she has a short time then they can apply for fast track funding for her. This will pay for care. They can also give an out of hours contact in case of any problems. Sometimes teams caring for people find it difficult to talk honestly about prognosis for fear of upsetting someone. Does she just have the district nurses or are Macmillan or St Barnabas involved?

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She has had the DN and Dougie Mac (Macmillan hospice where they live) involved for a while now. Since she was admitted to hospital last week the palliative nurse specialist at the hospital has been looking after her and sorting her pain meds. My dad and sister are meeting with her and mum tomorrow so hopefully we will have some more information then.
I totally understand that discussing prognosis is upsetting, however because me and my sister aren’t local to mum and dad it’s been made really challenging to know when to increase our involvement and have time off work to go and stay there to support them etc.
Mum and dad have been in denial about her prognosis from the start really.

[Princess Ariel]

Originally Posted by DFussy

Have they talked about what kind of outside support they could help your family with if your mum stayed at home. My mum is a member so she may see your post and reply with more detail but i will pm you an outline of our experience.

Best wishes to you and your family at this terrible time. D

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Thank you so so much, my dad and sister are meeting with the palliative care nurse and my mum tomorrow so I think all of this will be discussed in more depth then. I have said that there is no way my dad can manage her meds without help as he will become totally overwhelmed by it all (he’s 78 and just could not get his head around everything she is prescribed and all the doses etc).

[fletchie148]

So sorry to read this, my thoughts are with you xx

[Princess Ariel]

Originally Posted by Mary A

Do you have hospice at home in you mum's area?

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I think so, I’m not sure how much involvement they would be able to have, dougie mac have been trying to support mum for the last few months but she refuses visits and says she’s fine when she’s not (she’s admitted she’s had this extra growth for about 2 months but hasn’t told anyone until the pain became unbearable)
Hopefully this is something that can be discussed in more detail tomorrow, as long as we know a support system will be in place we can work together so that she can go home