Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Three Good Things

Tinalay
Posted by

That's awesome Daloni, best news ever!

This post has given me such a lift this morning, it's one of my 3 good things  xx

Tinalay 
SussexOvarian
Posted by

I am so pleased you are having the holiday you deserve. I hope your energy and all the good feelings that come with it will continue to improve from now on.

XX

Gobaith
Posted by

Hi all, 

Very encouraged by all your lovely things. jealous about Slovakia though, sounds fantastic. Can we all come and join in

Mine for today:

  •  Had a lovely Sunday lunch out with my family - a fab roast cooked by someone else!
  •  Was introduced to someone new by a friend and they knew nothing about my cancer so I was able to have a whole conversation about being human rather than being a cancer blob. 
  •  My 11 year old has a friend over and all with the world is well again (think she's been missing other 11 year olds... we're all "annoying"). 

Happy Sunday all. 

Clare
daloni
Posted by

Ooh that all sounds wonderfully normal . Just the ticket. 

I had a rest day yesterday and spent a happy morning playing a complicated dice game with my niece and older daughter. We sat in the sunshine drinking mineral water with lemon. So that’s my first thing. 

We did venture down to the river in the afternoon for things  two and three, namely swimming in the river and eating frozen yoghurt. Mmmm delicious. 

daloni
Posted by

Is this maybe the best swimming spot in the world? 

anndanv
Posted by

Hi Daloni, If it's not the best it must be one of them at least! Looks amazing! Are you home? Or when do you get home?

What are you doing awake at this unearthly hour of the morning!

Love Annette x

daloni
Posted by

Thanks, Annette! I’m up with insomnia, woken by a blinding headache which I have immediately self diagnosed as brain mets. Obviously. I’ve just as quickly told myself not to be ridiculous. It’s just a headache. 

I’m still on holiday. We have a day in Ljubljana tomorrow then home on Tuesday then pick up scan results from August 9 on Wednesday. Never a dull moment! 

Xx

Lass
Posted by

I'm impressed with your Slovakian spelling there Daloni! I'm having issues with English just now! Lol

So what's in Liliput to see or do tomorrow? Whatcha gonna be doing?

Sorry, just joining in the 'awake at an ungodly hour' chat. Hope you don't mind!

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

daloni
Posted by

That’s very funny Lass. Lilliput indeed. It’s Ljubljana (say lyubliyana although my brother in law calls it L-double-Jana) and it’s the capital of Slovenia. I lived in the Balkans for a couple of years working for the International Red Cross so have a grasp on the language group here. I was married to a Serb for 18 years and although Serbian and Slovenian are not the same languages, it’s the same family of languages. 

Anyway. Ljubljana is a lovely city. Small and green and perfect for wandering around and sitting in cafes. I’m meeting my ex’s brother and family for dinner; the rest of my crew are doing a room escape. Tomorrow I hand over my youngest to my ex’s brother and she’ll head on to Belgrade to meet her new baby brother. Yup  you read that right. My ex and I were only divorced in March this year. You do the maths. 

I repeat. Never a dull moment. 

Lass
Posted by

Lol. I like L double jana.

It is good when a language is in the same family as one you know, as you can then muddle through most situations. I don't even know what languages I know at this point. Living in Germany and doing it at school, I've quite a good grasp of the rules, but my vocabulary isn't great. Then when I travel, I try to learn some bits and pieces before I go. Finally I worked in the tourist industry in Edinburgh for my teens and early 20s, so picked up all sorts of things. So sometimes I surprise myself with a word I might know or a phrase I hear and understand. It's weird.

That sounds like you're in for a lovely day tomorrow then, I just hope you have the energy for it. What's the baking and cake situation like over there? The closest I think I have any knowledge of would be Polish baking, thanks to a Polish supermarket down the road with an I house bakery. Lol

And yes, I've followed the story of your philandering twat of an ex when you've shared on here. At least you don't need to be anywhere near him, and you've still got a relationship with his family. For the girls sake at least.

My fingers are crossed for good weather for you! 

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

Gobaith
Posted by

Today has been ok!

1. Dr seems to think my sore feet are being caused by hormones (lack of) and fatigue and so my early menopause is now going to be looked at to see if there's anything that may help. Relieved they don't need amputating yet (yes, big drama queen!).  

2. Been planning our holiday to North Wales for next week - never been to Anglesey and very much looking forward to it. 

3. Lots of lovely cuddles with child number three who drew a great picture of me and her dad today as I've been too tired to get out and about. Very precious and reminding myself it's ok to chill out and just be with each other. 

Clare
daloni
Posted by

I do hope something can be done about your feet, Clare. I have my fingers crossed. Planning for Wales sounds good. I feel a connection with the place as my name comes from there - my christian name is  Daloni (pronounced dal-on-ee rather the way most people intuitively read it to rhyme with baloney). It was my godmother’s grandfather’s pet name for his wife and is derived from the Welsh for “my little sweetheart”. They lived in Bangor. My godmother inherited the name and then it was passed to me. There are not many of us around and all of us have some connection with the North Welsh Seth-Hughes Family.  I’ve visited north wales only once though. 

I’m rambling. Sorry. My three good things 

1. I had a lovely morning in Ljubljana, touring the castle, sitting in cafes and eating ice cream 

2. The journey home was entirely uneventful 

3. I’m in my own bed. 

Off to hospital tomorrow morning for a routine check and scan results. I seem to have developed ascites in the last week so I’ll be able to discuss that too. Sigh. 

Maybug
Posted by

We had a holiday in North Wales in June and it was glorious. The scenery there is beautiful and we were blessed with good weather. My granddaughter loved the beaches and I’m sure your children will as well.

I can’t go on. I’ll go on. (Samuel Beckett)
daloni
Posted by

Hi 

a tricky day with scan results (see here if you’re interested https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/f/7cf15f26-3cf9-4436-895a-f7d7ee79310c/186366/a-day-of-ups-downs?Page=0#1374208

1. I met an elderly lady on the way home and we got chatting. She says she’d say a prayer for me at bedtime. It was nice. 

2. Spag Bol for supper. Comfort food. 

3. My best friend came down to London from Norwich today for a family do and we managed to meet up for coffee after my hospital appointment and before her party 

night sll xx 

daloni
Posted by

Goodness I’m tired today! I think I have overdone it rather in the last week or so 

My three good things today 

1. I called the lymphoedema clinic and they had a cancellation so were able to fit me in. I had a great chat with the nurse and got lots of tips on how to manage it better. It was really helpful as I’d been feeling really down about it. 

2. I had some really nice news. There was a post in the new to the community group a little while ago from a guy who wanted to help his terminally ill uncle make one last visit to his wife of over 50 years who’s in a nursing home. I suggested he contact a charity called Ambulance Wish. He did - and posted a message to say the visit happened. The charity had brought a specially adapted ambulance from London to Wales to make the visit happen and the BBC filmed it. I am so happy to have played a small part in this.

3. I picked a bag of cooking apples from a friend’s tree. Mmmmm 

xx