Daloni update

1. Hello sweet sweet daloni dont think you got my last message as its when when they was doing this work on the site, I want to say i really wish 

1i had got to know you sooner and am glad you have got your daughters future sorted mut be a relief to you i really appreciate all the support I got from you as I do with all the  family on here, and am very glad you now have pain Relief that is working for you I just want to say one lazing lady and am Hoping you have some more time no matter how long that is and that you seem at ease now hope we here from you again sweet lady  xxxxx

Hi All,

I was convinced that, bearing in mind where Millie recently moved from, that it would be one of the Hawaiian Islands but none seemed to fit.  I guess my "gut instinct" is off, I blame the side effects of my medication.

, I'm getting ready for my exotic holiday in Whitby at the end of the week.  I shall be trying the local delicacies, Whitby smoked kippers, cockles in vinegar, shrimp and then at the gastronomic end of the scale, fish and chips, ice cream and sticks of rock.  I will have a walk on the beach for you, lovely sandy beaches, usually with a sharp wind and often overcast with occasional brilliant glimpses of the sun.  Bram Stoker either got the idea for Drakula or wrote it whilst he was waiting there but I'm not scared of vampires, I have met too many phlebotomists and given too many blood samples to be scared of vampires.  My drugs are also cytotoxic (they kill cells) so anything drinking my blood is ingesting a toxin.  Perhaps I should have a health warning tattooed on my neck?

They have two Goth weekends in town each year, the main one is Halloween weekend but it got so buy that they have had to run another one six months afterwards.  It is a brilliant opportunity to sit and watch the world go by as loads of people turn out in all of their gothic finery. If you want to have a look Google "Whitby Goth Festival photos" and three are some spectacular images.  Whitby also has a big folk festival and it is interesting when you talk to the locals about the two festivals.  They describe the Goths as lovely people who dress weird and the Folkies as people who dress normal but who are a bit weird.

My plants continue to grow and I am becoming more and more convinced that they are pumpkins.  They are staying round, rather than elongated like butternut squash and the largest is now nearly the size of a football.  If they are pumpkins then I will have to battle my son for them.  He wants to carve them whilst I will want to eat the produce I have grown.  I will happily buy him a couple of supermarket pumpkins to carve like I normally do.

I hope that you are well rested and having a pleasant day.

Wishing everyone all the best,

Gragon x

Hi Gragon

I love your Whitby tales. You really bring the area alive. It’s years since I’ve seen Goths gathered in any numbers. Will you be there for the Goth weekend? I’m definitely going to google as you suggest. The local delicacies sound great  I’d be up for any or all of that lot. 

I have had an exciting afternoon. The pain team come into the hospice here once a week to monitor my pain control. Last week we talked about me doing some voice recording to help them with a paper about the hospital pain team working in a hospice. This week we did the recording. It was great - very easy. I just told the story of the horrendous pain I was in while at the hospital and how this is now gone. It’s a miracle. I actively wanted to die, the pain was that bad. Now I am living free from pain. Ok, it’s at a cost but so much better than being in hospital. 

I did the recording with the registrar from the pain team. I’m his first hospice patient. He said listening to me last week he suddenly got it, why it’s important that he work in hospices. He said it wasn’t so much like a penny dropped as a whole sack of gold. I think that’s extraordinary. I’ve changed the way someone looks at their job. Hopefully I’ve helped change things for other end of life patients too. Wow! The power of story telling. 

That’s as much as I can make my poor old brain do for now. I just hope the site doesn’t lose it....

much love 

Daloni xxx

That is incredible. You have done loads in the past to publicise all our difficulties but you could never have thought that you would introduce such a massive game changer. Just extraordinary, I cannot think of enough powerful words to describe it. To potentially help other patients .... I cant say any more. Congratulations. X

Thank you, . That’s a very lovely message. I’m glad I got to know you too. I talked to both my daughters on the phone today and they hope to visit next week. My big girl even asked for petrol money. Well, it’s norwich to London so certainly a substantial sum for a student. She did make me laugh.

Apologies for manic posting but hearing about your big girl is to me, brilliant news. She is treating you like a normal parent and definitely not walking on eggshells. That must be a treat, albeit a slightly expensive one!

thanks . It feels a real privilege. 

Have you had a good day? I hope so. It’s so soggy out there now. One of the day nurses told me he’d come to work in shorts and a tee shirt and forgotten it might rain! He will be running to the train station, he said. 

I have had lots of post. I’m going to look over it all again later. There’s some really lovely hand drawn and sewn cards 

xx Daloni 

Done nothing today Daloni except read whilst waiting for a telephone consultation, was told anytime between 1pm and 6.30, so been frightened even to go to the loo. Just had the call, useful this time, I think I have got used to not waving my arms at the phone.

Raining all day, I quite like watching it. Didn't even have to do any housework, we had estate agents around yesterday and Mrs N did not want to be shown up, so on Monday a proper job had to be done, skirting boards as well, it won't stay like it for long!

I guessed you would have had a shed load of cards, it is nice to open them and get immediate memories from the person signing. 

Xx

Hi Daloni

How is your bubble? Have we solved the volcano yet? Is it Etna, or the one with the long name in Iceland?

X

Hi flowerlady

Funnily enough Mount Vesuvius has just peaked during the midnight jiggle. Who knew my life was going to become obsessed by bodily functions? I guess it happens to the best if us 

Daloni xx