The individual level of dex is a personal thing…and ought to be reviewed for everyone. Being high as a kite means you have too much available for your body to need it all.
It’ll be interesting to see if I crash days 3-5 through exhaustion due to what I think now was dex overload. My iron levels were fine then…and are still the lower level of normal. Now as I had severe anaemia last winter I know the brain and body SEs of that as my doc was against transfusions so went on a big diet and iron liquid binge for three months to pull it up.
Some of chemo brain is I reckon due to the hammering of red blood cells…this “eat anything” without getting advice for helping the amount of iron in diet is nuts :(.
As my sense of taste is great this time…and for anyone who missed me saying it and Queen Pinkie JBT agreeing…get them to SLOW your cyclopropramide “C” syringe!!..I’m going back on rusty water sachets today so that it’s available to my body when production resumes. Off to jab my pro-neutrophil stuff in a mo.
And you will note from my rambles today that at 9 1/2 stone and 5ft6 even 4mg of dex is powerful stuff!!
@DG…there is stuff online about B6 supplementation and neuropathy in various disorders and it’s worth discussing. In a day or two when my brain stops gyrating I’m going to pull some papers together and see what regime seems sensible…and tweak it with onc next Tues. For now it’s knee jerk but can’t hurt (except laxative…but had anti-sickness so may balance!).
I don’t have to have tax…onc’s prog gives a bigger jump in survival than the NHS one and he only mentioned it for psychological reasons (five kids…divorced older father nbg living four and a half hours away). I asked if it was due to tumour size so he sort of added a yes to that as I’d mentioned it but no nodes. But having neuropathy with FEC (unusual) presumably increases my susceptibility to permanent troubles…my beekeeping, crafts, playing of musical instruments, kayaking and walking could all be severely affected. So vital to me to weigh things up.
It’s worth researching what can be done to reduce chances/severity of the bone pain and neuropathies for tax. A 3/4 weekly regime seems preferable to once every three weeks. Also asking oncs why so many French patients in particular have permanent hair loss with it…may be strength or number of treatments so don’t panic but it is something like 6.5% permanent hair loss).
I thought the ice/frozen peas on fingers/toes was to keep your nails. Nails should be painted with dark nail varnish which helps I think…though more so in summer with higher UV my nurse says.
@ Sophie…it’s the only thing my head can get round…I knitted four rows “in the round” (yeah, hands still raised) before I noticed I’d gone the wrong way and made a hole!! And I’m not using med terms…well only drug names and SEs…
…going to do nothing now: except write supermarket list in strict isle order :SSSS for OH
Hi girls a muga scan is sometimes given during chemo to asses the moving heart function as it shows images of it beating and if the ventricles are working poperly as some chemo can have a toxic effect on the heart muscle and can cause heart failure in extreme cases so they sometimes monitor it .Having said that my oncologist doesnt do any scan routinely unless their is symptoms or a problem so havent had one myself . Hope you all feeling better ive been xmas shopping today and bought another hair dye ha ha my usual ammonia and parabens included ha ha xx Julie
HI sarah i know you can get a HC 11 form from the post office and you can try and claim the money back from them or a contribution towards it it covers for wigs and supports so if you buy one send in the reciept etc and i would just try they can only say no .sometimes someplaces also give you them VAT free if its due to chemotherapy so ask aswell , xx Julie
Hi Sarah
I was thinking about going to the younger forum and pinkrose is already booked on it, so there will be a few people.
I’m private and didn’t get the wig voucher but did get the VAT taken off as it was for medical reasons.
Kimmie - are you watching come dine…cougar is scary!
I had a MUGA scan (multiple gated acqisition scan) as routine prior to commencing chemo. I have absolutely no medical history of note, and am/WAS fit and well. I’ve been told it’s routine every 6 to 12 weeks throughout chemo and herceptin to monitor effects on the ventricular walls, as they can become thinner during chemo resulting in heart failure. The volume of blood pumped from the ventricles is measured precisely. Chemo can be altered at an early stage to prevent further damage. In view of my problem during last night it’s as well I’m having them - but weird no-one else is.
Feeling loads better, ta everyone. xx
Sarah, my chemo’s private through OH work but got an NHS prescription for the hair people who visit the NHS hospital. Will know what it costs next week :S. Still shedding nicely as a grade 1 alopecia with the cold cap so hope won’t need it…but caps defo colder yesterday. Must have had thicker hair than I thought!
And yes, you can get VAT off any that it’s on elsewhere as well…self certified form.
deb - my first dose is Fri & I think that’s Sophie’s too. Have the famed nativity tomorrow - hope I don’t cry toomuch (more than is seemly anyway!) - am sure it will get to me esp as have OH, mum, sister & niece going too. We now have to decide on which baby doll would suit the part of jesus - I think it should be the proper tiny tears one cos the cheapie supermarket one doesn’t quite cut the mustard in my book!!! - as sophie is choosing she’ll probably want one of her barbies instead!!!
Xjo XXXXXXX
My eldest, Daisy, was the angel Gabriel in one school production when she was five, the only one I’ve been to that’s actually been held in a largeish church. She had a streaming cold, but wanted to do it, and when Gabriel was telling Mary she had been chosen by God to have a baby… Daisy sneezed so hard her halo flew off - not sure I remember that happening in the Gospels…
Are you allowed to take pics? We can at the littlies school, always think it is such a shame when schools get over-precious about photos - and Sophie Millykins as Mary is a must-have one for the album. I thoroughly agree that she should use a Barbie for Jesus - nothing like putting your personal stamp on a starring role.
Pack lots of tissues… I did for my girls’ nativity last night, but didn’t need any cos it was really a bit dull. Only the reception class do the dressing up bit, so mine were just ‘chorus’ and it was all new weird music that I didn’t recognise, so I was saved from getting over emotional. Now, if they’d sung ‘little donkey’ I’d have been in bits…
I had a cry today… my eldest son said he went into the chapel today at school and wrote a prayer for me. I don’t know whether i was crying as i was happy to think he’s thinking of me and how kind of him to do that, or sad because i thought he’s way to young to be worrying about all of this, and shouldn’t have a care in the world and be playing in the playround with the rest of his friends…
Jo photos are essential. What a treat her being mary but like sophie says tissues essential. Had my eldests show today and went armed with tissues even tho he was only percussion but emotions and all that. Instead of tears he had me in stitches whilst playing the coconuts…i’ll leave it to your imagination as to what he was doing with said coconuts.
