A Day of Ups & Downs

I'm sorry to hear that for both of you and

Did you get some relief on the ascites front Daloni? Glad you can see Dr K so soon. Fingers crossed for options. 

Hoping for great sleep wee blond despite the noisy interruptions. Any nurses loudly telling the ward about their hols at 3am, please swear loudly, I never had the guts but really wanted to. 

Night. 

Oh my they are spoiling you, WB! You won’t know yourself after four whole hours of sleep. 

Sorry you didn’t get home. And sorry about your scan. I feel like a snow globe that’s been shaken. I’ll settle soon. 

Xx

Thanks Clare. No relief for the oedema/ascites. The only drug option is a diuretic and you cannot use them with wonky kidneys.  I’ll ring the lymphoedema nurses tomorrow and see what they say. Ho hum. 

Xx

Hi FOLKS,, I've just caught up with  this post and threads! I'm at the coo's tail (last) as usual!

WB, I'm so sorry you ended up in hospital just as your daughter got home! I do hope she is staying for a while so you will get a chance to catch up! I expect you are all sleeping by now but this is about my usual time to check the Latest Activity in our group! Do you think you will get home for the weekend or maybe before then! Let's hope those markers go down, especially when you are feeling a bit better! Sorry about the results but I'm sure your team will have a plan up and running in no time!

RUTH, It takes a long time to put affairs in order but the hard part of clearing your mum's house is over. Hope everything else goes smoothly. Sorry to hear about your BIL but your sister wouldn't want you to go all that way for fear of you becoming ill on such a long flight, she'll understand! By the way, my oncologist applied originally to the companies making the drug I needed after me failing the stringent tests before I was allowed to start a Combo trial, as one of the drugs in the trial had to be ruled out. The drug companŷ agreed to supply and pay for the other trial drug for me. I think half the battle is having a good oncologist who will fight in your corner! Good luck, you are half way there!

DALONI, Your holiday sounds fantastic and also you well the Belle of the Ball with everyone rallying round! Just as it should be! When we went away before c, I always used to try something I hadn't done before, like white water rafting, parasailing,parra sending, water skiing etc but nowadays, I'm just happy to be there! Changed days all round! I was hoping your swelling was maybe just due to the flights and sorry that's not the case! However you have an excellent oncologist and team who will again, I'm sure, find you some suitable options to consider! Not too long to wait to see them too which is good! Just tell them there's another Team here routing for you, so find you the best option!

I suppose I'd better read for a bit and try to sleep after that. WB four hours in a row is more than I've had in months! Hope you feel the benifit!     

Night night everyone!   Or Good Morning if you have just woken up! LOL!

Hi Alijo62

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

Morning anndanv 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

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

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

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

Hi ruthjp

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