We understand that people with cancer are worried about coronavirus. Here is the latest guidance. We will update it regularly.

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.

Out of limbo

ruthjp
Posted by

Thanks for the redeploy yes I felt better and relieved to have the will done . It did seem to upset my husband and children when I told them I had done it. But we have to accept the future and plan for it.

i understand you wanting to do things you know your husband wouldn’t do.

i worry sometimes how he will cope and whether he will do the things I normally do. But he will have to manage and I can’t worry about these things all the time. The house is fairly up together and Roge rheas been paining the lounge and sorting the garden and doing all the odd jobs.

i do the baking cleaning and food ordering he is not good on the computer so I have given him my old I pad and am getting him to google things for himself and write to his brother as I always do it all 

love xxx

Ruth 

Tinalay
Posted by

After so many highs and lows throughout various trials it must feel a bit like Groundhog Day

It's reassuring that this course of treatment is being led by your awesome Consultant and I hope you'll still be more than a little in love with her as it gets underway. Daunting, scary and a good feeling, so familiar. I hope it'll do all that it's meant to as kindly as possible, I like the idea of your Consultant pulling another magic bunny out of the hat and have everything crossed for you.

I saw my Consultant last week and am restarting chemo tomorrow. I was tolerating weekly paclitaxel and was booked in for a Hickman line but have been switched to nab paclitaxel 3 weekly. Apparently it's very expensive and the NHS wouldn't fund it prior to Covid 19 so I'm lucky, no central line, fewer hospital visits, shorter visits......and a lot stronger, gulp.

A glorious sunny day here with a high of 26 degrees, looking forward to a spell in the garden this afternoon. 

xx

Tinalay 
Deb1E
Posted by

Hi Daloni et al

Daloni

Good news and good luck for the 1st June. 

I had my second chemo last Thursday and the clinic was far busier than my first one.  Although the nurses were on the go the whole time they said they were pleased to see it so hopefully a sign that things are starting to get back to some semblance of normality and treatment for everybody.

Another hot sunny day today so hopefully the same wherever you all are.

Have a good day

xx

Deb1E
tvman
Posted by

Hi Tinalay

Good luck with your new chemo tomorrow, I have a blood cancer and don't get chemo so all those names I've seen before but it's gobbledegook to me.

Send some sunshine over here please, there's a ribbon of cloud hanging over the coasts of County Antrim and Down so we have 17°C just 

Tvman xx

Love life and family.
daloni
Posted by

Hi

wasn’t it a glorious sunny day yesterday? Actually it was far too hot for me, especially in my compression stockings, so I stayed inside during the heat and ventured out for a walk at 6 pm with the dog. The poor dog was far too hot as well. My girls wrapped her in a wet tea towel and she slept quite happily like that for quite awhile. She keeps looking at me as if to say please make this stop. But my goodness the light as the sun went down. The sky  was the colour of  a just ripe peach for a short while.

I do hope your chemotherapy goes well today. I hope they find a vein immediately, and bring you lots of nice cups of tea and biscuits and send you home quickly  

lots of love xxx

Peggy24
Posted by

Hi Daloni

Glad you have your treatment is  sorted although it’s a daunting thought but we have to make a choice.

I still haven’t heard anything but I’m keeping busy painting and enjoying the sun.

             Take care xx

Keep strong and positive x

Deb1E
Posted by

Hi Daloni 

Not been online for a few days so a bit out of touch w posts but hope that today is going ahead.  x

Deb1E
daloni
Posted by

Hi and indeed all my chums

I signed on the dotted line for more chemo today, with the aim of controlling the cancer. It will be cisplatin, so I won't lose my hair, but it will be weekly up in London. and will take all day. Do I go on the train? In some ways it is the simplest solution but I can hear the chorus of shouts against the idea from here. I will need to organise a rota of friends. 

It was a weird visit with everyone in full masks and gloves. I met a very nice CNS who was struggling with a visor that kept steaming up. Being a very expressive person, she kept bashing the mask as she waved her hands around so that made me laugh. 

I've just been out to walk the dog around the local cricket pitch. I am losing my strength and mobility by the day now so I think this chemo can't come a moment too soon. 

I hope everyone is able to enjoy this lovely day today 

xx

anndanv
Posted by

Hi Daloni, so that's the signing all done! What date is your first chemo? It is a pity they can't do it closer to home but if you stick to the correct distance between yourself and anyone else on the train, wear a mask and throw away gloves, I'm sure you will be fine! I'm so pleased it's actually going to happen, you have been a long time in Limbo! Is there an alternative way to travel for treatment?

I laughed out loud when you said about the CNS struggling with her shield steaming up and her bashing it with her hands! That's what happened to my husband when they started wearing visors in work! He works overnight in the local hospital's Out of Hours service and he wears glasses, so not only did the visor steam up but the glasses did too! He kept bumping the visor with his hands! He has the same problem with a fabric mask! The water runs down from his glasses, down his cheeks and makes the mask wet, especially during this weather!

I hope you had a very restful night Daloni after your busy day! It is so strange here, it is 22.45 and there is still a bit of light in the sky! I have just come in from watering the garden, the temperature was perfect! I hope your chemo starts ASAP!

Love Annette x

Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
Dance in the rain
Posted by

So pleased you are going ahead with the chemo Daloni.  And yes get that rota organised you know if the tables were turned you’d want to help in any way you could.  
I hope it very quickly allows you better mobility and strength so you can enjoy dog walking.  I went out for a walk for the first time in 10 weeks this evening.  I went with my two sons and Jack our dog it was blissful! 
Take care everybody 

anndanv
Posted by

Hi, I was wondering how your chemo was going! I hope you are managing with little or no side effects! Take Care 

Love Annette x

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

Hi

There is a few of us going through chemo right now and I am losing track who’s started, who’s finished and who’s in the thick of it. I do hope you’re faring ok. 

I will start my chemo tomorrow. I managed to put the update in someone else’s thread. In case anyone else is also losing track, it’s here

https://community.macmillan.org.uk/cancer_experiences/living_with_incurable_cancer/f/7cf15f26-3cf9-4436-895a-f7d7ee79310c/201253/treatment?Page=1#1466520

xx