We Talk Brain Tumours

FormerMember over 15 years ago

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Hi everyone

I am just trying to navigate myself around the site. Still struggling, but thought I would try and make a temporary place for the WTBT folk as we are all wandering round like lost souls at the moment- don't know if this will work- but worth a shot while Mac try and resurrect the old thread

Love Ali xxx

FormerMember over 13 years ago in reply to FormerMember

I agree 100% with Pam…since my last message here I have been…how do we say…a little more proactive ;o)

I have cried, shouted, screamed, demanded, interrupted, instructed, refused, complained, and finally thanked all that eventually helped me. I now have 4 carers into see Mum daily. I have OCT’s, physios, Dr’s, district Nurses appointments coming out of my hoo-ha and we even have a key contact from the Hospice who I call when I just don’t know what to do. She still annoys the hell out me, when Mums hospital bed was delivered the pump (which needs to be on at all times) on it sounded like an angry vacuum cleaner. When I called the key worker to ask who I contact to get the bed changed or removed (as no conscious human being could sleep with that racket, how they could I just don’t know) she told me to contact a storage company! I went ballistic. She then said she was worried I was depressed; I said “Of course I blooming depressed, my Mum is dying in front of me and NO ONE is helping me make her end of life simple!” Surprisingly since then, things have been a little easier.

I felt awful at first; however the squeaky wheel does indeed get the NHS oil. Such a sad and shitty set up, but my/our reality right now.

Unsurprisingly our Macmillan Nurse hasn’t been in touch once, even though Mum was admitted to hospital and then the hospice for over 2 weeks. Sigh.

Lots of love to you all

Elisa xxxxx

FormerMember over 13 years ago in reply to FormerMember

I don't know if this helps but.....

(it probably isn't relevent to most of you) as I live in an apartment / flat that has a secure gate entry.

I deliberately kept the gate locked ... when we had viistors (NHS and carers) coming to see us... that way they would have to ring me to let them in.

BINGO !!! .... now I had their personal work mobile numbers. Haaa-Haaa-Hhaaaaaa... sneakkkky.

Take care x

FormerMember over 13 years ago in reply to FormerMember

Lynda, you made me laugh. Ive done the same! Ive actually taken the battery out of Mum's doorbell and put a laminated sign on the door asking everyone to call me ;o)

Ta-da!

FormerMember over 13 years ago in reply to FormerMember

Lynda, you evil genius!!

Makes my petty theft of NHS latex gloves seem so small fry in comparison!

Pam

catg over 13 years ago in reply to FormerMember

Pam you make me laugh! I think I will call you "Big Cojones" from now on.

Well done Lynda and Elisat. We have to do whatever it takes.

FormerMember over 13 years ago in reply to catg

Honestly guys... I really am THE most mild mannered person you are likely to meet.

Until my husbands illness, I was never, not even a teeny bit sneaky .... I felt, that as we / he had been treated so poorly .... and no one would return my 'help needed please' phone calls .... I just did what it takes ....

If I thought about it, I'm sure I could pass on more 'sneaky tips' I'm not sure the Mac Team would approve though.

FormerMember over 13 years ago in reply to FormerMember

Oh some rebellion in the ranks I see! Well, you ladies go for it, it's a case of whatever works or mostly who shouts loudest.

I do love a bit of sneakiness, I like to think of us as covert operatives.....yeah I am weird but it passes the time :-)

Much love & strength to all who want or need it xxx

catg over 13 years ago in reply to FormerMember

If my memory serves me I think Pete had a Mutiny Log at one point......

FormerMember over 13 years ago in reply to catg

Hehe.

Yes, that's right. This usually involved ignoring any idea of visiting hours, removing Ali from the ward whenever I wanted to, performing nursing/portering duties when needed, bringing my own food/drink into the ward, using Ali's pillow case from home, and bringing the garden into hospital for Ali to see all of the flowers and leaves that she so loved in our own garden.

I'm sure there were other things as well.

The most mutinous thing was insisting on using manual transfers for most of the time (I managed to continue this until about a month before she passed away, a huge victory). But then, I was only able to do this due to my physical strength.

FormerMember over 13 years ago in reply to FormerMember

Ha ha Pete! Love it!!!

I bet your ring tone is the 'Mission Impossible" theme tune.

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We Talk Brain Tumours