Vanelliope 
you should have been given a rapid response card by your team if you are in the Uk. You should show this if you are sent to A&E sorry you were treated like tgat by your A&E dept. Please get a rapid response card from your team to show if you end up in this situation again well done being vigilant on your temperature and ringing ???
Shi xx
@Vanelliope I am so glad you are ok and at home now x. I think it’s scary enough you really should not have to explain the situation to hospital staff, that is just upsetting.
I’m wondering how often this happens as I went for a blood check on Mon to a and E and showed my card and the woman booking me it looked at it blankly, asked what I wanted (blood test to check is it magnesium? Brain fog) and told me to wait in the very busy waiting room. Had to explain to her again and she told me to wait for triage nurse by the door ??
Be as gentle with yourself as you can, meet people when you feel comfortable, or maybe outside? And wishing you a smoother path from here on in x
Thank you @Shi and @emjs for your kind words. .
I have posted pictures on Facebook and people keep saying how brave and strong I am, I just see that I’m dealing with it as I and all of the other chemo kings and Queens on here are, we have no choice but we do have choices . I would sooner inspire people and if my pictures help anyone to see that OK we can’t stop hair loss but we can take control of it . I laughed with my best friend during the cutting and had no tears which was a shock.
Next is to work out how to tie scarves .I am doing things with humour as that’s how I deal with it .
I did read up on hair trimming before the cut and read a few times to use no.2 on trimmer as if you go any shorter something about hair could get stuck and that’s when you get the red bumpy look …also now use baby shampoo and bodywash.
One of my free gift boxes from Little lifts is turning up today , will let you know what it’s like
Hi again everyone just back from hospital and had one of the free gift boxes delivered. This one is from Little Lifts . This is the Chemo one they also do a radiotherapy one.
Iincludes a bag, oils to help sleep,toothbrush and toothpaste,tea,cordial,mints,oils for food,cards with lolly recipes herbs,chocolate,wheat bag ,moisturiser and wildflower seeds that you plant at beginning of treatment and then should have flowers by end of treatment…nice idea just suppose it depends how long treat
ment is.
What a great surprise, @Kneezee . I got something similar from my “chemo class” at my oncologist. You needed a pick me up! I’m glad you got one.
My niece buzzed my hair down yesterday, and a woman at our farmer’s market knitted me a beautiful hat. I requested one with cotton, and she said she’d make it in the colors i wanted. When I went to pick it up, she insisted on giving it to me. Her brother had gone through treatment, and she said being able to give them away was the reason she made and sold the others. It was very kind. And my head is a bit chilly this morning! So a hat is welcome!
So I ended up in A&E early Tuesday morning and been in hospital since, very low blood counts, severe diarrhoea, everything I did manage to eat came straight out.
they said I have an infection and pumping antiobiotics in every few hours day and night via a drip
they say prob be here into next week.
my chemo oncologist came to see me earlier and said will lower my next dose which is a week Tuesday.
so not been a good few days for my mind or body …it’s shot away!
but silver lining I have a nice side room with own bathroom…?
Paulapops67, sorry to hear you are in casa nhs but glad you got your team to check you over and getting antibiotics into you if it’s in your cycle when you are nadir too they will be keeping close eye on your neutrophils too try pretending it’s a premier inn room that’s what I did when I had a 6 day casa nhs stay on my first chemo we’re all here for you keep us posted ??Shi xx
@Paulypops67 , I’m sorry you have ended up in hospital but I’m happy you are being taken care of now. I really hope you are well enough to go home soon
xxx
So sorry you ended up in hospital too @Paulypops67 , it’s not nice.
You are in the right place though, and glad they are looking after you well. I really tried to treat my stay like a mini break (Netflix binge on iPad, en suite room, room service tea and toast, I even had a window!)
Rest up and feel better soon - my top tip is to get someone to bring you in an eye mask as it never gets dark in hospitals so this really helped me to get a bit of sleep.
Thanks
and good idea re mask
Has anyone else had neuropathy in their hands or feet? I keep waking up at 4am with tingling or numb hands and feet. I know this can happen, wondering how common it’s is or if anyone has thought about wearing cooling gloves and socks during chemo. I’ve ordered some from Amazon but I don’t know how effective they would be.
Emsj please let your team know about this before your next infusion ??Shi xx
@emsj , I have the same numbness and tingling, mostly in my toes and ball of my feet. My feet feel cold, especiallyat bedtime. My fingers only sometimes tingle at the tips by my nailbeds. I reported it to the team right away and will bring it up again with the doctor before my treatment tomorrow. I know they can reduce the dose, which is a gamble. But the neuropathy doesn’t always go away after treatment, which is a gamble. I’ll see what the doctor says. She said before we started that there are medications for nerve pain, but they only help with pain, which I don’t have. They don’t improve the neuropathy. And I really don’t want to take more drugs at this point, especially if she doesn’t think they’ll help.
I asked the oncologist, the naturopathic doctor, and the nurse navigator about icing. None of them were convinced it would help much if at all. However, the idea is the same as the cold caps, and many have luck with those. Please keep us posted on how it works and if it helps. With TCHP taking so long for all 4 drugs, will you ice the whole time as well as before and after, like with cold caps, or just for the TC?
I go to an acupuncturist and scheduled a massage (in a month, first open appointment), and I do massage myself before bed. I roll a spiky ball under my feet, too. I figure those might help, plus they feel good. ?
Secon session yesterday 1/4 of way through now. All good at minute , bit woozy headed but nothing a paracetamol can help. Same as last time looking back at journal. I seem to get a cold twinge in nose when having the clear part of EC like brain freeze tingle … was told its because its cold as in refrigerated . I’m hoping to get a bit of crafting done today .making some bits with a friend for Xmas fairs .gonks,baubles and anything my imagination comes up with…
OK big thing at weekend .my youngest grand daughter christening so first outing with no hair . Wigs first outing . Below is 2 pictures one with white blouse is my wig £26 from amazon trimmed by friend and straightened . Other is my hair… think I pulled it off well
Hi Lucy,
finally was let home from hospital last night feeling so much better.
everything settled so now hoping for a good ish week before my next cycle on Tuesday.
thanks for asking.x
@Kneezee you look great! I love the scarf too its a lovely colour. Also love your plans for the day, making things is good to lose yourself in. And well done for 2nd treatment, mine is next week it will be good to count it off and I know more what to expect now.
I haven’t had tingling in my toes and fingers but I am a it colder than usual though its not that hot outside (I have to say quite glad about that).
How are you doing @Paulypops67 ? Are you feeling any better?
Onwards and upwards everyone, last week seemed to fly by.
Oh I booked a zoom make up session! I don’t wear much make up at the best of times but it might be fun.
X
@Kneezee …they let me out of hospital last night …was so nice to have a proper shower, cuppa, meal and my glorious bed I missed so much, all my levels had got to an ok stage and the diarrhoea has sorted itself out…so all good for now, I have a week of hopefully feeling human before my second coke next Tuesday.
thanks for asking.xx