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.

A Day of Ups & Downs

daloni
Posted by

Hi

I don’t think we’ve talked before? Welcome and hi! Nice to meet you.

Not being able to sleep is vile and makes me cry too. I don’t think it’s weeping over nothing.  And besides, it’s not a competition to see who can suffer most

xx

daloni
Posted by

Morning  Annette

for once I wasn’t awake in the wee small hours. My Fitbit tells me I slept six and a half hours last night. Woo hoo! That’s the best in a long time. 

Xx

fighting girl
Posted by

Morning all

It to take my most adored dog out for a walk but had to reply 

daloni     I am sad that you are now waiting for another treatment plan from dr k ,but she sounds fab and will have more tricks up her sleeve, your holiday sounds great and thank goodness you made it , your family sound just lovely 

w blonde.     Hope you are out of hospital asap , i hate being there as we all do ,i really hate sharing toilets and showers ,but if you feel that ill there is no choice !  Don t i sound spoilt ? I m not but it is just something that has come as i age , hopefully your daughter is still around to brighten your day 

 hope everyone has the beautiful sunshine and blue sky we have down south 

positive thoughts to all

janet

xxxxx

Wee blonde
Posted by

Greetings from.....the hospital. Still here.

Good news I only got woken twice 4 obs & managed 2 drop back 2 sleep instantly. 

Bad news they can't get blood out of me. Pleb tried 3 times this morn (but I hadn't had anything 2 drink 4 9 hours so it was always gonna b a struggle). Doc says if no blood then it would b 2morrow b4 escape.

Bad news no.2 - I've developed an infected finger. All it needs is the pus squeezed out but seemingly this is classed as a surgical procedure (someone give me a sterile needle & antiseptic). If u understand Scots then its   stooning (aka throbbing).

Janet, no sharing of facilities 4 me as I'm in solitary confinement due 2 infection risk aaagghhhh.

Missing ma girl, my pups & my super comfy bed. My friend has offered 2 grab a getaway car & sister-in-law has offered 2 create a distraction #breakout #naughtygirl #letmeout

Take care everyone

WB xx

Wee blonde

Hard working,  bubbly, positive

ruthjp
Posted by

Hi Annette,

thank you for your reply. It s helpful to know that some patients get success going direct to the drug company. I hope my oncologist is successful for me.

yes there is a lot of waiting again and  I find that tiring even though I am used to having to wait now.

th weather is making me feel better now and I had a good swim yesterday.

instill haven’t heard back from the eye hospital about a brain scan. I am seeing my GP at the end of a month so he can chase things for me  and will have the letters and reports of my scan of my spine.

hope you get some sleep 

love Ruth xxx

Ruth age 66

 acc R submandibular gland wth lung mets

daloni
Posted by

Hi

I also got hold of a whizzy new drug paid for by the company. It kept me going for 15 months from November 2016 to Feb 2018. I don’t think consultants apply for “compassionate use” funding (as it’s called) unless they think you’re in with a chance. It took my consultant three applications to two different companies over six months to secure funding for me. 

Fingers crossed for you 

xx

anndanv
Posted by

WOW!! Daloni, six and a half hours sleep, I'm so jealous but so pleased for you! Keep it up!

Love Annette x

anndanv
Posted by

WB, So sorry you have been kept in a bit longer! Now I am Scottish born and bred but I've never heard that expression! I gather it's extremely sore! I have a 3 strikes and you're out rule with people trying to get blood! If they don't get it the third time, they have to get someone else to do it! Glad to hear at least you are managing to get some sleep! Hope it won't be long until you're home in your own bed! Preferably before the weekend! 

Love Annette x

daloni
Posted by

Hi

So where are you? Home or hospital? I do hope you’re tucked up in your own bed but I suspect you’re still stuck in hospital. 

Love n hugs 

xxx

Tinalay
Posted by

Morning Wee blonde, I's so sorry you're in hospital instead of having a lovely catch up with your daughter. That finger must be painful. Hope you'll be able to make your escape soon, and get back to your comfy bed, family and pups xx

Tinalay 
Wee blonde
Posted by

Morning all. 

Good news! I've escaped! Got out st 5pm last night but was so tired could barely make it 2 the car & then into the house. Was in the land of nod, curled up on the couch just after 7pm.

Need 2 find some energy from somewhere as have 2 get 2 doc 4 12.30pm 2day & also have a planned family meal out 2morrow night (may end up with my face in my soup!)

Official diagnosis was neutropenic- sepsis so I'm lucky the hospital is so switched on.

BCN visited my bedside y'day & said subject 2 my bloods we would go ahead with chemo #2 on Wed - fingers crossed this is a blip & not a sign of wot will happen everytime.

Hope 2 b back at work on Mon as have an easy 2 hours on my feet (she says!), then deskbound 4 rest of day - but this depends on how much spinach I can guzzle over the weekend.

Dear daughter has started some of her post-camp washing so I'm hoping she can continue with the rest even with me being home. Do u know I did the shopping 4 them from my hospital bed - yeah I know "mug" written across my forehead!

Still on antibiotics 4 the nxt few days & suffering from the antibiotics weight loss diet (tmi) but I'll pick up.

Thanks 4 all the kind wishes buds

WB xx

Wee blonde

Hard working,  bubbly, positive

fighting girl
Posted by

So pleased wee blonde that you are home , still you vet had a rotten time ,but good thing the hospital are on the ball

daughter and dogs must be thrilled to have u back where u belong 

xxxxxx

janet 

sheensb
Posted by

Just had to pop on to say what a trooper Wee Blonde!  

Hope you get to do all your plans you’ve made over the coming days.

Sheena
daloni
Posted by

Brilliant news, WB. How wonderful to be home. 

I must say though that I raised my eyebrows at the going back to work bit. Seriously? For a start, will you have the strength? Sepsis doesn’t half take it out of you. Then there’s  the risk of picking up another bug in your immune-compromised state. Ditto going out for a meal. Why not get people round for a take away with strict instructions that guests clear up? That’s what I’ve done in the past when I’ve been home from hospital after a chemo-related infection. I realise you didn’t ask for my advice and probably don’t want it but I repeat, seriously? Nuff said. 

Also, add some actimel and/or kefir to the shopping. It really does help with antibiotic tummy. 

Stop with the advice already! 

Xxx

Tinalay
Posted by

I'm with Daloni here! We all get a lot of unsolicited advice, but I have to admit to a sharp intake of breath when I saw you were going back to work Wee blonde.

Slap bang in the middle of sepsis and another round of chemo, gulp.

It's taken me 8 weeks to go back to very, very part time work after a hospital admission for pneumonia. I was told to take a minimum of 4 weeks off, but developed plantar fasciitis and then tonsillitis which knocked me back further. Have got my spark back but energy levels are only marginally off rock bottom.

Wishing you the very best of luck with it all xx

Tinalay