Another trip on the roller coaster

I hope your PICC arm becomes comfortable soon.  I seem to remember it took two or three days to settle down.  

I had FLAG-Ida (without the G) plus Mylotarg for my first round of chemo, on the AML19 trial. Don't remember having too many side effects from it.  A little bit nauseus, but I didn't lose my hair, had no pain and was otherwise fine. 

It was very effective stuff for me, in line with its observations in clinical trials, generally!  Got me into complete remission with no residual disease detectable from 95% blasts at diagnosis. 

I hope you also have an equally positive experience of it.   

Are you back on C6? I swear, if I ever win the lottery, I shall employ a full-time chef to provide custom meals for patients on that unit. I used to have to get the nurses to nip down to M&S and buy me sandwiches I could eat and hot bacon rolls!  

Thinking of you constantly and wishing you well. 

Sheri xx

Hi Tessa, after a few days I was using my PICC arm just about as normal but no weight lifting.

Roll of cling film for wrapping it for taking a shower.

((hugs))

Picc arm was bleeding, two layers of bandage now ok. They have to leave initial dressing in place for 24 hours. Feels ok if i dont bend it. Fortunately long sighted so i can hold phone etc at arms length to read or type. Had shower with a plastic apron wound around arm. Once they have standard dressing on they say I just need to cover the bung ends.

Yes c6 one of the larger rooms. Had The Talk and signed my life away for the second time.

 Just had third meal in a row that tasted quite nice but lukewarm and small portions. But in a few days i'll be glad not to have much on my plate, always feel worse if the plate looks too challenging. Think they finally understand that. Big slice of chocolate pudding though.

Southampton is starting CAR-T next year and there will be no upper age limit. So if my cells had waited a few more months it might have been a completely different regime.

Tessa

Fabulous news about CAR-T in Southampton!  Let's hope the current regime works for you and you don't need it - but how great to know that there is now a positive answer to Mike's universal question: "What's next?"   

Staff are sweet at microwaving food, if it's lukewarm, I found, if you just ask.  The woman whose name I have forgotten, but who supervises the distribution of meals is always happy to help.  She used to sneak me packs of Alpro soya yogurts, when I couldn't eat much else.  They are 'supposed' to only give one at a time, but when there's not much else you fancy...

The other thing I discovered was the Asian vegetarian menu!  That tended to be tastier than the normal menus and I could taste the spiciness, when I couldn't enjoy much else.

Do you have something like a tablet and Netflix subscription, so you can watch films and series to pass the time? 

Sheri 

Thanks for advice about meals. I have HD tv in room better than mine at home and DVD player. I'm not a great film watcher or novel reader at the best of times.  I've some books on gardens and poetry and exercise books to write in. I am bereft if I dont have pen and paper. My gardening magazine laid on the bed has already made connections with two of the staff who have same obsession. Twitter is also a nice lightweight time passer. I have blocked all the political stuff and just get photos of trees and butterflies and art and nature things and interesting words. A gallivaster is a big brash boasting man. See i would never have known that.

Just this week I was told you can get audiobooks on a Kindle and was going to buy one but didnt get the chance. Need access to a PC to load them though so not viable at the moment. 

Better try to get a few hours sleep now before they wake me for 2 am obs.

Tessa

Thinking of you Tessa. You have a lot of support here and we are all rooting for you. xx

Thinking of you Tessa, hope the hints help! If you’re on an iPhone, kindle works on there, but not sure about audiobooks.....there are free audiobooks you can download on iPhones too. 
hugs xxx

Kindle works on an Android phone or tablet too and so does the alternative, Kobo. 

I have both, but one advantage of Kobo is that you can borrow books / audiobooks electronically from the library at no cost.  You can download them temporarily and keep them for a set period before they 'disappear' again - just like borrowing a hard copy!  

I don't have any audiobooks on mine, but I have lots of historial novels and crime fiction.  You would be very welcome to 'share' if you would like to.  

Big hugs xxx

6th day nearly finished chemo but temperature yo-yo though I feel ok. Now all the tests to find mystery infection.

Tessa

....... and if you are anything like me they can never find the source of some of the infections.