Onwards and Upwards: Staying stale in the teacup of life

[biscuitsandbandages]

This is my 3rd thread as I go from a shock diagnosis of leukaemia towards what will hopefully be a cure.

Life is shit but I am strong and there will be happy times again.

Thank you everyone for your ongoing suppport x

DashingRedhead, thank you for posting. Its good to know that mummy is still needed when we get out of here. I will pm you when im feeling a lottle better if you dont mind. Would be good to talk.

Great idea to save the thread somehow and keep it as a diary. I need to get internet access again somehow other than just my phone! On the upside the nurse coordinator from the transplant team called today and they have free wifi on the transplant ward so I can Skype witj my kids evwryday!

I hope they understand one day. I hope im here to explain so its all worthwhile.

DashingRedhead, thank you for posting. Its good to know that mummy is still needed when we get out of here. I will pm you when im feeling a lottle better if you dont mind. Would be good to talk.

Great idea to save the thread somehow and keep it as a diary. I need to get internet access again somehow other than just my phone! On the upside the nurse coordinator from the transplant team called today and they have free wifi on the transplant ward so I can Skype witj my kids evwryday!

I hope they understand one day. I hope im here to explain so its all worthwhile.

So glad to have found you - another day closer to you getting home!

Hi biscuits. A lurker here, willing you on to recovery. I sincerely hope you are home with your DCs soon.

Just popping in to say hi. Hope you are having a nice sleep.

Brief hello here too wishing you a good day and more surprise cuddles?

Hi :-)

Bit down today.
There is a big family wedding which of course I wont be going to and hoped I could. I still have no neutrophils. Still trapped in my box.

Oh biscuits that's pants, on the plus side if the chemo has blasted your neutrophils so badly then it must have done the same to the damn leukaemic cells too.

I'm frantically trying to think up indoor party games for my DD today, our planned pool party looks unlikely as it's currently raining and windy. Typical timing after such a lovely July.

Oh no! Thats so annoying!
Hope she still has a great time x

Bah how annoying about the wedding! I hope the neutrophils rise soon. Sorry your down. Are the wee crumbs going to the wedding? Would a wedding Skype be nice? Or too jealous making for words?

Oh dear - would someone be able to link you via Skype on a tablet? Or is hospital signal not good enough?

We have once got the IT department to allow someone to link to the hospital internet to Skype family in Australia - IT loved doing it as it was a much more rewarding job than the usual 'I've forgotten my password'.

Cant use the hospital wifi and my hotspot is down so I just have my phone.

My lovely uncle has just put photos on facebook fpr me to see. The kids look so smart!

Glad you could see the photos. Onwards!

Seeing those photos must be very bitter/sweet.

Come on neutrophils! Biscuits needs to get out of her box!!!!

Very bittersweet indeed.
Feeling randomly tearful but will have a full tin this afternoon as all the kids are coming for a visit :-)

Have a lovely afternoon with your babies, Biscuits!

Enjoy the afternoon biscuits - hope you're feeling OK. No doubt you'll get to hear all about the wedding from your little ones.

Oh yes over and over again :-)

How do I learn to eat again? Im living on biscuits toast and the occasional banana. Everything else, even the thought, turns my stomach. Im losing weight and ive never had this problem with my other chemo admissions. Im fairly sure if I was home and dh served me whatever he had cooked I would be able to eat at least some of it. Neutropenic diet limitations (no fresh fruit or veg) combined with hospital stodge and changed tastes is not a good way forward.

Oh and after 3months of a half hearted effort my hair has finally decided this is the chemo cycle that broke the camels back.

My pillow looks like a catsbed.

Afternoon Biscuits. Glad to hear you have a full tin on its way.

Is your hair long or short? Would having it cut make you feel you better about it? Sort of taking control a bit?

I had it cut very short during my first cycle. Im bot sure there will be any this time next week. I qonder what I will look like without hair? I will look like a cancer patient and wont be able to pretend its not happening.

Toast is I'm sure highly nutritious. Some chemo absolutely wrecks your tastebuds along with the nausea but toast always seems to be tasty. God knows the 'nutritional supplements' aren't.

Toaster is always the most common request when you ask patients what they want in a unit - I'm sure wifi would be a close second. I think an enormous amount of cancer fighting is powered by toast alone.

Im almost looking forward to going to the transplant unit in a month or so. They have wifi and access to a toaster a kettle and a microwave without having to ask the nurses all the time. All the patients are neutropenic so the well ones get a little freedom.

Its a good job I have no access to clippers kr I might just shave the lot off!

I did! Honestly, about two thirds of mine came out in one go after my first round and I looked awful so shaved it off. My husband bought me some very funky headgear from suburban turban that was actually very flattering. Several peole said I just looked like I'd decided turbans were cool... It was actually quite a relief for me. But we all react to these things different ways and I know what you mean about pretending it isn't happening.

I am sending you such MASSIVE sympathy about the food, I really am. My mum used to bring me in a meal once a week at least. My best friend used to bring me picnics. My husband kept up a deluge of snacks. But it's never enough! And for anyone used to remotely good food, it's a kind of torture. You will recover. I could have done with losing some weight to be honest, but I didn't! Almost everything involving vegetables in our hospital was covered in cheese sauce. I never want to see cheese sauce again.

How are the neutrophils? Are you having GCSF injections to get them going?

Does your hospital really not have patient wifi? That's a bit rubbish. Mine did it and it was only 13.50 for the month so I signed up the first day of each round and it was really quite a good connection. How did people manage without technology? I think I would have pined away without Facebook, Facetime and so on...