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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.

Hello to the night shift.

Peggy24
Posted by

HI Night shift 

Wide awake again  hoped I would pass the 1am no Sparky.Having a bit of problem with blurry vision 

thought it was glasses not clean but no eyeballs,ha

Lovely weather but a bit hot to sleep use to have no problem but I am too big at the moment and feel the heat.

Own felt like food always have,

Hope you are all ok  and pain free. I’ll try again 40 winks

Keep strong and positive x

daloni
Posted by

Thank you

and @mclkid @georgette

I think I am on the way up now. I’m staying with my niece this weekend so she will look after me. 

Good luck with your chemo Georgette 

xxx

Georgette
Posted by

Thanks Daloni,

Good to hear that you are having a break with your niece,it will do you good. Pleased you are on the way up out of the doldrums.

My chemo went ok ,dealing with steroids now, otherwise ok. I only hope that my bloods will be ok 2nd of July so that I can have the single agent of Gemsar,on the 3rd.

Take care and stay safe. I hope that you get really spoilt, because you deserve it.

Georgette xx

daloni
Posted by

Hi

I am glad to hear your chemo went well.  I know what you mean about dealing with steroids. Ugh. Good luck with the bloods. 

I have been spoiled all weekend and it’s been lovely. We had a lovely day of sunshine which we spent lounging in the garden. My niece has spent her lockdown time giving it a makeover so she was keen to enjoy it. Noodle was hilarious. My niece has a hammock and every time anyone lay down in it she’d jump in too, curl up and go to sleep. Yesterday we went out on my sister’s boat on the Broads. It was very lovely and very relaxing. 

Home today. It will be nice to sleep in my own bed. I’m awake now because I struggle with pain when I lie flat. My own bed is electric so I can prop myself up in the ideal position. 

xxx

Pet1968
Posted by

aww Noodle is a cuddle monster, i love that!!! Glad you're got comfort in your own bed, but hey nothing better then getting spoiled over the weekend!!

Pet

anndanv
Posted by

Hi, I was so pleased to hear your weekend was all you expected it to be and you even managed out on the boat without falling in! Lol! As I was reading your post, I was waiting for the "but" as you have had such a hard time of it recently! I was so pleased when I got to the end and there was no But! It's great you were spoiled and it sounds as if Noodle got into the holiday mood too. I hope you and your daughter had a smooth trip home and are at present, fast asleep in your own comfortable bed. I too have an Adjustomatic bed and it is brilliant! Time to have a pj day if you are tired after your busy weekend!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
Georgette
Posted by

Hi daloni,

You sound as if you had a really fun weekend,which is great. I laughed when I read about Noodle getting in the hammock.

I love the broads.so quite envy you regarding that. I used to live on the edge of Newmarket,so the broads were quite accessible . You were very lucky to have sunshine over the w/e,as here it was mixed with quite a lot of heavy showers.

Totally agree about being in your own bed,& especially if you have an electric one which must be a great help.

Take care,

xx

daloni
Posted by

Hi Annette and Georgette 

thank you  I was indeed tucked up in my own bed and fast asleep. Today I’m having a lovely time slowly making some bunting. It’s very therapeutic 

xx

ownedbystaffies
Posted by

Hi

You have been quiet for several days, so just wanted to send some good thoughts.

xx

daloni
Posted by

Thank you . You are right. I’ve been very quiet. I think I overdid it - it being acting the “professional patient” at a series of events and with follow up media interest. There was the health select committee, then a webinar for Macmillan’s corporate partners. Before that there was Sky News, Radio 4 Today programme, Radio 5 Live. After the select committee there was BBC south east news, then two live interviews on Radio Kent. 

All in all I felt too much of my life was cancer and I needed a break. My chemo last week was postponed (nothing sinister, I just hadn’t seen a doctor before the start of the next cycle. I see her tomorrow and the postponed chemo is scheduled for Thursday). So that was the physical break I needed. I stepped back from the community to give myself the mental break I needed from cancer. 

I think I’m nearly done and I’ve stated to miss my friends here in the community. I’m going to ease myself back in slowly so expect to see me around a bit more. 

Thank you for thinking of me. I hope you’re well. Tell me you’re well? 

Lots of love 

xxx

anndanv
Posted by

Hi & Everyone,  Daloni I hope you have recovered from your busy spell and I know how much work you do to raise cancer awareness and McMillan Cancer, however it's time to look after yourself and take it easy! Oh I know, I hate it too when others tell me to slow down but sometimes it is necessary! I've not been on the site for a bit myself. I was in a lot of pain for a while there but hopefully my new meds are starting to work now. Although I'm still not sleeping,and you will see by the time! Also when I've been TRYING to log in recently, as I knew you were ment to have treatment last week, it's been telling me to "create an account" and a form appears asking name email password etc, then when I clicked Continue it said "I'm sorry, there is already an account with these details and I'd be shouting at my iPad saying "yes, I know, it's ME!" But it wouldn't let me go any further! I decided to persevere and try again this morning and lo & behold, I got through!

I hope everyone is doing alright, sorry to hear you are in hospital Peggy, hope you are on the mend and home soon!

TAKE  CARE EVERYONE, especially those who are in places where the Lockdown has been eased! Here in Scotland, we are not at that stage yet as our First Minister is taking advise from the medics and doing things a bit slower! not sure what's happening in NI, are you still screening in isolation! There's not been much gardening here the last week due to the rain and wind!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
tvman
Posted by

Hir , Annette  and everyone

Good to see you back with us Daloni, I had guessed you weren't well because that's the only thing that keeps you from here but I would never have guessed that your busy media schedule was the cause as you would normally handle that admirably. However, there were quite a few individual interviews that I wasn't aware of and it's not just physical activity that lays us low. I hope your chemo goes well on Thursday.

Annette, I had guessed your pains were keeping you away although I knew that understandably your frustrations with connectivity were leading to annoyance and you were taking a break. I was also having trouble with the site and was in contact with Steph from admin a few times. My troubles were resolved though and Steph had reassured me that things were running fine.

Your list of problems with the site is even longer than Daloni's media schedule which is quite an achievement but not one you would desire. To hear that you were being denied access, then when you went through with registration only to be told that there was already someone with those details caused me to smile a little, only because it is so laughably not funny if you know what I mean. I'd have been shouting just as loudly if not louder. It reminds me of a few times when I've been logging in to my bank and being asked to answer yes or no to a question. Now even with my Northern Ireland accent which frequently causes issues, yes or no cannot possibly be misinterpreted or misunderstood, you wo I can't count the number of times the lady replies that she can't understand my reply so that makes me to raise my voice ask her why it is that she doesn't understand yes! Of course that's the point at which she immediately cuts me off without reason. So infuriating!

Not quite the weather for gardening although try telling the weeds that. At least I'm not digging so much, I'm catching up with a few diy jobs, one of which was repairing yet another drawer broken by my wife shoving too much into it! Annette, I'll be shielding until 31st July but I wouldn't be surprised if it's extended when I see and hear reports of mass ignoring of social distancing. That gets my back up. I'm not sure if I'll be rushing out willy nilly in August, more like dipping my toe in gently.

Sorry for such a long post, friends, take care and stay safe everyone.

Tvman xx

Love life and family.
Peggy24
Posted by

Hi Daloni

Glad you are ok. I think it’s good to have a break sometimes and talk about other things.

All the best for your next treatment and hope you stay pain free.x

Keep strong and positive x

Peggy24
Posted by

Hi Anndav 

Hope you got on top of you pain nothing worse and hopefully the sleeping will come back.

I am going home today my blood count has improved still on antibiotics but home I go.Daughters pleased we can start to plan Saturday 

my Birthday,.    Take care xx

Keep strong and positive x

Georgette
Posted by

Hi Daloni,

I am pleased that you are ok,but fully understand why you have not been on here,you definitely do need a break from thinking about cancer. I actually have felt a bit that way myself plus the fact that I have felt very tired & have joint pain in my hips,which I am finding frustrating. Hey ho, it is obviously a side effect of the chemo. I try to think along the lines that if the chemo works then the pain will be worth it.

Take care,I hope the chemo goes well for Thursday.

Georgette xx