F A O Sqad

[nailit]

Further to my Mums terminal bone cancer diagnosis earlier on this year...
She's recently had more tests (scans, x-rays and bloods). Had a phone call today off my sister who was at oncology with her. Cancer has now spread into her spine. Was told that she would begin to lose the use of her arms and legs. My sister asked the oncologist how long she had left to live and was told a few months at most.

1) If told by a professional ''a few months'' does that actually translate into a few weeks?
Ive had a few family members and acquaintances die with various cancers who have been told ''a few months'' when in reality it has been a few weeks (or even days). I appreciate that timing cant be exact.

2) My mum dreads the thought of going into a hospice (or hospital even) and...like my dad...wishes to end her life at home. If (when) her limbs give out, what care package (if any) could be put into place to ensure her dying wish?

If its anything to do with McMillan, forget it! They have been less than useless in THIS case.
More concerned initially whether she had been the toilet that day and then dismissed her.
Thanks.

[pixie374]

Hi,sorry to hear that (I am not sqad...). They will have given you the best estimate they can. It is never exact, but they won't deliberately mislead you x
She can certainly stay at home,if she prefers...you will need to arrange carers (and possibly district nurses) depending on what she needs.

[Sqad]

I am sorry about your mum Nailit.

in my experience "a few months" means less than a year.......I cannot be more specific than that.

There is no such thing as a "care package" each patient is an individual and is treated as such........pain control, urinary control and paralysis of limbs can all be managed by a combination of your GP and district nurses.
I can quite understand why she wants to die at home.....I would bw the same.

[woofgang]

I really wish that people would say something like days to weeks or weeks to months because I think that would give relatives a better feeling for how long it might be. The truth is that although they can know from experience what is likely, no one really knows. How to arrange care will depend a bit on how things are organised locally. If your Mum is at home now then its the GP to approach and or local social services therough the council, if she is in hosptal then it will be the discharge team. Sooner rather than later because she will need specialist equipment as well as people and it all takes time to arrange. McMillan don't have a monopoly on uselessness, the hospice that has the local contract (and it IS a contract whatever McMillan portray is as) was worse than useless when my husband was dying, all but the consultant and her sidekick who did their best. It should be possible for her to die at home as she wishes but it may take some firm persistence on the part of the family.

[Bobbisox1]

So sorry Nailit

[nailit]

Thanks Pix,
her carers were stopped a few months ago (funding, money, austerity or whatever) My sister was left to wash and dress her whenever she could.

[nailit]

Thanks for quick reply Sqad,
The urinary control was of a concern (as is bowel control) between my sister and myself,
Thanks again.

[Mamyalynne]

Sorry to hear Mum has reached this stage Nailit.

I agree with all the above, once my Husband got the terminal diagnosis and made his wishes known then I liaised with the GP and District Nurses - as time progressed,more and different equipment was needed and largely things went well.

He got his wish - I send you all the strength and love you'll need.

[nailit]

Thanks woofgang.
So sorry about your husbands experience.

[Rockrose]

Very sorry nailit, we were told 9 months and got 3 although slightly different circumstances dad had a fast growing brain tumour.
The palative team stepped in and arranged the carers as it was obvious they would be handling dad in the near future.
That team was brilliant the carers were not! I won’t give the horror story of what my darling dad endured.
My advice get a cheap camera that you can log in to from a phone.
Regards to your mum x

[nailit]

Thank you Bobbie and Mamy, appreciate it.

All a bit head battering at the mo.

[Peter Pedant]

the doctors are the first to say they dont know ( how long)

but it can be a surprising long time
https://www.healthline.com/health/cancer-spread-to-bones-life-expectancy#next-steps

I wd say 16 w but in view of the above I take that back

2) in terms of the care package - some one in your family should be agreed to be in charge, and then THEY do it - - go thro the GP and discuss the options. You or they easily have enough time. then the rest of the family stand back

Sorry to hear this - MacMillan were very good for my mother and less good for me, I thinkk it depends on the staff.

[nailit]

Thank RR, appreciate it.
//That team was brilliant the carers were not!//
My mums oncology team are the best but the home care (carers) have been useless. Know what you mean.

[Purist]

My dad initially was given about a year and for the first few weeks after that diagnosis he seemed okay and not in pain, then he went downhill extremely quickly and the year ended up being about 3 months. Cherish the time you have left and I am so sorry to hear of your mums diagnosis x

[nailit]

//Sorry to hear this - MacMillan were very good for my mother and less good for me, I thinkk it depends on the staff//
Thanks PP,
Have to agree, depends on the staff!
My mums McMillan nurses were the pits.
Ive known others who were angels...

[nailit]

//Cherish the time you have left and I am so sorry to hear of your mums diagnosis x//
Thank you purest and I DO cherish the time left
(just don't know if its a few weeks or half a year) either way, its a sharp reminder to show love to those we cherish...

[nailit]

Sorry Sqad (my heads up my arris at the mo) but does loss off limbs (arms and legs) equate to loss of urinary/bowel movements as well?

[pixie374]

No, nailit x

[nailit]

Thanks Pix...

[Cloverjo]

Very sorry to read about your mum’s diagnosis, Nailit. For my mum we were told she had “months” despite us not actually asking how long she had. Felt like a kick in the guts. She died 3 months later.

I agree with you about Macmillan nurses. I’m sure there must be nice ones but we had a horror too.

[horseshoes]

So sorry Nailit. On the practical side, I don't know about England, but certainly in Wales, once there's a diagnosis of cancer, care is free. Check it out. Also do you have a Hospice at Home service?