For people living with incurable cancer only
This group is aimed only at people who have had an incurable diagnosis themselves, as we have had feedback that they would like a safe space to share their feelings openly among themselves.
If you have a loved one with incurable cancer, you are very welcome on the Online Community as a whole, but we would ask that you respect the wishes of people with incurable cancer and not post in this particular group. Instead, you will find really good support in the Carers group, the relevant cancer type group and the supporting someone with incurable cancer group.
Aaw that's lovely Daloni! I think you played a very big part in making that visit happen! Where did you hear about Ambulance Wish? Was it part of the information when you became a Community Champion or did you hear from elsewhere? Do you happen to know ( as you are a mine of information!) is that an England/Wales charity or do they have something similar in Scotland! Good for you! X
Love Annette x
I heard about them on a TV show and somehow dredged it out of my memory. As to their geographical coverage, I know nothing. This is their website:
What is a community champ?
Yesterday really enjoyed:
Sunshine with a gentle breeze
Fish and chips followed by real dairy honeycomb ice cream
Video clip of youngest granddaughter dancing in a puddle
That sounds like three truly lovely things.
Thank you Daloni. The loveliest thing is that I’m seeing her next week. She’s a total sweetie but lives at the other end of the country. I try to squeeze as much time as possible with my gorgeous girls while I’m feeling reasonably well.
this is the week you see that darling granddaughter. I’m so excited for you!
I’m having a tricky time managing nausea and pain at the moment (and the fear that comes with them). So it’s all the more important for me to focus on the good things
1. My daughter is back from her trip to meet her new brother. She’s come home happy.
2. I took her out for dinner at her favourite restaurant this evening to congratulate her on a great grade in her GCSE English literature. It was the only one she took this year - the rest are next year. She worked hard and got a great result.
3. I have some cooking apples from a friend’s tree. I’ll make apple custard tomorrow. Yum.
So sorry it’s been so long since I posted anything. I’ve been struggling to find joyful things to put down on paper. I’ve enjoyed reading all of your positive responses it’s been a great help.
Scan at the end of July showed further spread to Liver,kidney and Lungs so I’ve been feeling a bit doomed. Also feeling really shabby which is not surprising as when a turned up for 1st Chemo (Caelyx) last week there was a very much touch and go moment as I was anaemic and needed a blood transfusion. Finally they went ahead with chemo but then I was back to the hospital again on Friday for the transfusion. Big week.
Amazingly I felt better after the chemo. Came home hungry having been off my food for about 3 weeks. Bloods gave me some energy but I’m on the slippery slope just now. They tell me day 10-14 are my worst days and I’m only on day 7.......another week to go before I pick up!
However my good things are
Thoroughly enjoying this beautiful weather and having an excuse to just sit about in it eating ice cream
I now have my daughter and wee Ted home until Thursday morning I’ll be making the most of my cuddles. Maternity leave is wonderful when they chose to spend it here.
I’m enjoying making plans for my 60th birthday which is in a few weeks time. I think the fact I’m still here is cause for celebration. I’m hoping to be well enough for a sneaky trip to Mallorca (not sure) and also thought I may as well have a ‘do’. I may as well ‘milk it’
Dear Kircal, it sounds like a tough time and I am glad that you are now feeling more lively and hungry. Hope you manage a trip away and you enjoy your birthday. Love and courage
Hi Polly Kircal
that sounds like a pile of pooh. I’m sorry things are so tough for you. I’ve had Caelyx and have to say it wasn’t as bad as carbo-taxol. I didn’t lose my hair or have the long bone pain or breathlessness. I picked up after about day 7. I hope it won’t be so bad for you as you’ve been led to believe.
Your three good things sound like really good things. Cuddles are the best.
My three good things
1. Cuddling on the sofa with my little one. She’s needed lots of cuddles today.
2. I took my girls on an alpaca trek. Not so much a trek as a very gentle walk, holding alpacas on leads while they ate grass and dandelions. I couldn’t honestly say the girls led the alpacas. More the other way round. I got a hilarious video of one of them taking off across the field with my little one running along behind.
3. I made frozen yoghurt with honey and raspberries. Delicious.
Thanks for your message. The chemo unit had/have painted a very grim picture of Caelyx but so far it’s not been quite as bad as I expected. If I can keep my hair I’ll be chuffed. Used the Cool Scalp as before but it just about finished me off this time. I think the Cool Scalp combined with the ‘here we go again moment’ was just about too much for me. Anyway I’m on day 8 now and this morning I actually did feel a bit more normal again. Sorry everyone for the complete misery guts message the other day. I wanted to delete it after re reading.
Good things today
Daughter was driving all the way to London with wee Ted in the car so I travelled as far as Harrogate in the back of the car playing with him. Heaven
Managed to buy some Betty’s treats for home
Time to have a quick bite in Bettys which I love before getting the train home to Berwick.
All great except now I’m stuck on the Harrogate to York train which is stationary. Missed my connection. Complete bumber!
Oh I am glad to hear you’re picking up physically and emotionally. Don’t worry about the moan. Everyone I’d entitled to their funny five minutes.
I wonder why the chemo unit painted such a grim picture of Caelyx? I thought the whole point was that the poison, sorry, chemo is wrapped in a fat molecule so it’s released slower thus reducing side effects? That’s the way it was explained to me. Sometimes I wish someone would educate health professionals on the importance of hope.
Betty’s and a grandchild. Now there are some treats. The train not so much. I once left my bag on the York to Harrogate train en route to a conference.
I am currently at the cancer centre waiting to see my oncologist to talk about what’s next. Too early for my good things today....
Hope you can take something good from the rest of your day.
I caught my train so I’m feeling very pleased with myself.
Even had to run a bit.
Chemo unit have no previous experience of Caelyx so they are taking the info from the book as it were.
I’m getting mine every 4 weeks. Were you the same?
Fingers crossed it works. So glad to have an appetite. I think I’m addicted to steroids. I want more. They make me hungry and happy
Good luck today
Hi polly & daloni, caelyx is my next option if my trial is a damp squib, so thank you for the insights.
Polly, I am pleased you are picking up and happy and hungry, and made it home to berwick, I always think it looks lovely as the train pulls in to it (I’m edinburgh so have often got the east coast train).
daloni, I am wishing you all the very best for your appointment today, may they have something good to tell you, I have everything crossed.
ive not done 3 good things before so here are mine for this week
i think I got on to my trial -first treatment to start on Monday, wish me luck.
last night a friend from work took me out for seafood and wine and whisky, we sat in a wonderful restaurant and looked at the sunset over leith and talked about life and I had a wonderful time. He said “I can’t do anything to help so I am taking you for dinner”. What a wonderful help he was!
on Sunday early morning I drove up to see my mum in Aberdeenshire, as I drove over the hills, the colours were fantastic, it was a wonderful sight to see.
and a good week last week for the cricket, thank you to Ben stokes and the England cricket team for reminding me miracles do happen!
wishing everyone a lovely evening, Heather xxxx
Ah thanks Heather - and here’s to friends who take us to dinner.
1. My oncologist does have a couple of options but wants to give me four weeks off treatment before doing anything. I could so do with a break.
2. I had delicious lentil burgers for supper.
3. I finished a pair of shorts and trousers for my niece. Fabulous African print in teal, yellow and purple.
Heather that is a friend indeed. Such a simple thing to do but so effective at lifting your spirits. Good luck with the trial on Monday.
Berwick is a wonderful sight as you head up the East Coast line. Quite a spectacular homecoming every time.
Daloni I’m so pleased your team have something else up their sleeves. However enjoy the next few weeks getting some strength up before the next treatment begins. Can’t believe you’ve been sewing as well. You have so much energy.
3 great things
Made it home
Nice meal prepared by husband
Flopped into my bed. Bliss
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