I also got the sense they will keep checking in on me as I am a bit ‘borderline’ in terms of whether I need to go in or not. That’s reassuring to feel am on radar
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Good to hear from you @Kara , and sorry you’re having such a hard time. Like you I feel so reassured, though, when the helpline people call back to check on you, and how wonderful to get that lovely nurse offering to bring things round for you. I hope the flucanzole adn mouth wash help your mouth. So far so good with PICC line for me, its more uncomfortable than painful, although the first day it did bleed alot, but been ok (so far!), since it was redressed and flushed the next day. I dont get a distict nurse, I go into the unit for my line care and bloods. Different trusts , different systems!
I’ll try the cold mitts etc when I start docetaxel next month, but not hopeful i’ll manage, what with cold cap as well! Like you, I’m not sure how long they’ll stay cold, but not willing to pay out for a spare set esp when i dont know if ill be able to tolerate it anyways. I’ve bought some compression gloves to wear too, which sounds far more tolerable, and I have some old flight socks that I’ll use for feet, which might or might not help….
I’ve heard that massaging feet/fingers is supposed to help, and exercise ( if possible!!), but also that the neuropathy is usually short term, so hold on to that thought.
Well done for finding a positive in all this, and embracing the rest and ride it out policy.
Wishing you all the best xx
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Thank you.
Yes everywhere is different! being able to go into the unit regularly must have pluses if there’s anything you are worried about.
What compression gloves did you get? Am thinking that may be a more practical option!!
I think above shoulder height is ok if not all the way above the head but def to avoid repetitive movements so no bicep curls etc. & agreed side lying stuff will have to wait for us at the moment, Movement was always my mental health/life affirming thing & it’s so hard without it so I’m trying to accept a slower simpler connection to my body through this phase. Had my mastectomy & cording from full node removal in September & was just staring to feel strength was coming back before starting chemo 9 weeks later. The yoga& the Pilates will be waiting for us in our recovery afterwards & will help us so much then & if like me you have years of hormone stuff ahead I know it’s the home I will continue to return to. This slow time is not forever. My first round was so horrific with a resting heart rate over 100 & terrible headaches & dizziness there wasn’t even any walking but I’ve had a dose reduction so hoping to feel human before day 20 this time to get a bit more movement in! Xx
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I’ve got a couple of compression pairs of gloves I’m happy to pop in the post for you-didn’t realise but I can’t use them due to node removal & picc line so I’m going to try to the Suzzi pads instead. Have a small & a medium. Feel free to message me if you might like them x
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Ah that’s interesting… though I have also had node removal and a PICC line so I may be in same boat! I may have to wait to Ask oncologist I guess. I will let you know, thank you!!
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I’ve been reading everyone’s posts even though I’ve not written myself. Struggled a bit with my hair situation and also been busy with the kids ( boys age 7&9) over Christmas.
I decided to shave it off just before Christmas as although I cold capped for 3 ec sessions I had shed a lot and had some big bald patches. Got my wig but I’m not overly keen. It’s ok with a hat on but not great without, although I’m getting more used to it. At home I just wear a soft cap but if I forget my youngest hates it🥴
Had my first paclitaxel on Monday and oh my - super achy legs/hips today…, hope this won’t be like it all the way through😳 counting down so got 3 more sessions to go.
I’m the same as some of you and couldn’t figure out logistics for the suzzipads , so I’ve gone for compression socks and will see how it goes.
My nails have started to go a bit dark so that’s another thing to worry about… I’ve got the nail workshop next week so that will be helpful I think.
That’s amazing @Kara that the nurse will drop off your medication- I hope you feel better soon.
Hope everyone is doing as well as they can!! X
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I got these
My measurements were a bit borderline between small and medium, and I went for medium which I think may have been a mistake as they don’t feel very tight. But maybe tight enough. Who knows?!! We have to do a lot of guess work for our extra protection,don’t we?
Yes I like going into unit, there are always extra things to ask about/ get reassurance about . I got great advice/ moral support from another patient when I was there yesterday too .
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Hope you’re feeling a bit better after dose reduction? Have you been able to get out and walk at all? I find that so mentally healing apart from anything else, although the ice was a bit scary today!!!
Are you not allowed to use compression 
if you have a picc line then? Or only if you had nodes removed?
I’m on blood thinners now due to blood clot from my picc so being cautious about any compression but I think it’s worth checking with the nurse. Full node removal I think also worth asking. I just don’t want any unnecessary complications beyond the ones I already have!
Not saying it out loud as only day 3 but seems better so far 
managed 5 minutes wandering round the garden today whereas I couldn’t even stand up last time with the headache & dizziness. One day at a time isn’t it?! Yes be careful in the ice! Was quite mild here today!
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I wondered about getting these for my painful hands and wearing compression socks on feet (which have been fine, it’s my fingers that have gone berserk, and am thinking pain relief as well as prevention) NEWGO Hand Ice Pack Glove, 2Pack Hot Cold Therapy Full Coverage Ice Cryotherapy Gloves, Soft Gel Cold Gloves for Arthritis, Carpal Tunnel, Chemotherapy, Swelling -Blue : Amazon.co.uk: Health & Personal Care
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Dragged self downstairs so can answer door as and when nurse drops in. Feel utter sh*te… just want to be in bed lol but I guess good for her to see how I am 
I assume she is still coming, not heard otherwise
I’m sure she’ll come! Take care, and keep talking to advice line if thigns keep being this bad xx
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interesting , not seen these before. so many things available , but so hard to know if they are worth it. Maybe worth a try if finances allow, and they are not as expensive as some things ive seen.
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Good, good! And I am also touching wood for you as i type….
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Hello from hospital!
Yes had temperature yesterday morning (of all days the day it snowed) so was called in to hospital. Had to get Uber, thank fully such a kind driver who put his mask on, aired out the car from previous passenger by opening windows, was happy for me to keep window open a crack to ease nausea (more from exertion than a side effect as was definitely feeling rough). Thankfully the roads were actually okay. (My partner is an hour in other direction, so he left work, went home, charged car , picked up a couple of essentials I had forgotten - eye mask and ear plugs, which I definitely needed! and then joined me mid afternoon and stayed with me until I finally got my proper bed in the evening).
I was called into OHAU (Oncology haematology assessment unit), I don’t think all hospitals have these, without it I would have gone to A&E so I was immensely grateful that I had this option. I was still nearly 9 hours in the assessment room, though thankfully the chairs were comfortable and I managed to transfer to a trolley bed for the last 4 while I waited for my actual bed - bloods showed elevated CRP so they were quite firm about me staying in. I was so desperate for a bed though, especially when my temp was spiking!
I have been on a bay on the unit last night (it’s still early but had bloods taken at 6am), on a drip with fluids till midnight. potentially here tonight, after that you get moved to the chemo ward if necessary. Depends how my infection responds to the antibiotics they are giving me. The detailed blood cultures take a little longer to come back and may give more insight into what I need.
The rash on my hands they twigged immediately, and photographed etc, they are looking to prescribe some cream. There’s a possibility the infection is related as there’s inflammation in the skin connecting my thumb and forefinger and the registrar when I eventually saw her was frowning over that. She was really nice and clear and thorough, which is reassuring.
They just took my temperature it’s gone right down now thank goodness! So that’s hopeful.
So a bit of drama but although it’s never ideal to stay in hospital at least you can just ask things and not be at home worrying about symptoms!!
Hope you are all okay.
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Wishing you a speedy release from hospital and recovery @Kara. Big bravo to NHS, Uber man and of course your lovely hubster x
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Ok no @Kara sorry to hear you are in hospital. Hope you feel better soon, the infection goes and you get home asap. Like you say the only advantage is asking them all the questions instead of second guessing yourself!!
I was in a lot of pain in my joints and leg muscles after my first paclitaxel on Monday and I ended up ringing the ward, the nurse wasn’t that helpful🙄 but I went for my picc line flush and she was great. Said it was the combination of chemo/injections, saw the nurse practitioner and she gave me a prescription for codeine- second day of taking them today and it’s feeling better. I could barely walk!
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