Hi @anim4l glad to hear from you. Hopefully you will improve in the short term, your body is still recovering from the infection xx
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Hi @cathie2 hope your pacli was ok this week. Mine is on wed this week for some reason. Thanks for the mri info - I’m hoping my oncologist might have the results on Fri but otherwise the mdt is the following Thurs.
Mum is out of theatre now and seems stable in intensive care - op went well they say. So sorry to hear you’re still wiped out after the infection @anim4l but so glad you were able to have the pacli. I second @cathie2 @annabananna these ladies are fab and we can get through the shitshow together!
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Thanks so much x
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Thanks so much Cathie. I cried on some poor random woman on my dog walk today!! But it has since meant I have got a lot more support around me. I’m still feeling exhausted and anxious, but not as overwhelmed. I’m a problem solver and very independent normally, so I find the brain fog really stressful. Hopefully it won’t last 
I hope you’re getting through ok
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Damn it - I spiked a temp today which has totally gone and they’re delaying tomorrow’s chemo sigh sigh sigh. I think they may just drop it. I’m absolutely bloody fine but had to get checked out
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Hi @annabananna i can’t add much to what @cathie2 said beautifully, you’re so welcome here and we all share our highs and lows. It’s terrifying when it’s all new. I finished my 12 weeks of paclitaxel last week and I swear when I started I had so many moments of thinking I couldn’t do it. It was as if sometimes my brain rejected the very idea of having cancer and needing this brutal treatment but I live by the mantra “tomorrow is a new day, one step at a time”. Yes some days are really bad but they don’t last and the care teams have solutions for every eventuality. I did read (I need to understand everything so I research constantly like a loon) that vit B12 is good for nerve repair so I’m eating a tsp of marmite daily, it’s disgusting. 
I also take barley malt and cod liver oil. I bought a cream called Mira Organics for hands and feet too xxx ask any questions you need anytime xx
@anim4l so glad to have you back, no wonder you’re knackered!!! You need to recover! Amazing you had your pax, hope you don’t feel added crap on top, how’s your daughter doing?
@cathie2 they said it’s classic pax rash- itchy bumps and red patches. I think pembro complications would involve joint pain and swelling. I’ve had my Red Devil and had a lovely pink wee! Jeez, this is the shittest Christmas present ever (tops even the 50p I used to get from Auntie Nelly when I was 10). Snuggled up on sofa ready for a snooze now x
@emsd2025 oh ffs! But the main thing is you’re ok and them being cautious is a good thing but I know how disappointed you’ll be!!! Is your temp still stable? Were you very hot? I’m getting more flushes now for sure but not something to warrant a temp check. Don’t beat yourself up you did the right thing xxx
@cridders how are you feeling day4? I’ve got my usual pelfilgrastim to stab myself with tomorrow, well, Mike will do it. Oh the joy, added to which I now feel like an umpah lumpah as I waddle. I don’t know what’s worse the rash or the new gut, expecting steroid trip later…
Love and big hugs to all xxx
Rachel
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Oh gosh @story1 how was EC? So they’ve changed their mind and I can have it now as I’m fine. Is everyone checking their temps daily? It’s been drummed Into me from the pre chemo appt, I knew I was fine (well thought so) but you never know…honestly I’m desperate for some smoked salmon now! It’s weird I didn’t want to not have it of course but when the doc said I couldn’t I was disappointed and a bit relieved!
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It’s a great idea to pop onto another monthly chemo as those ahead of you have a wealth of experience. I joined one in June and September due to having surgery first not chemo but kept up with both groups.
If you don’t feel something is right, please phone your helpline or mention at your next appointment. Also BCN nurses can be very helpful 0808 800 6000 Mon-Fri 9-4 Sat 9-1.
I had 12 weekly Paclitaxel and had some tingling and numbness that came and went so my team weren’t too bothered. I was told if permanent they can just the dose.
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Thank you so much. I don’t know what I’d do without this community. I’m in a rural area and quite young and none of my friends have been through anything similar. I’ve since connected with a breast care nurse and also getting some mental health support. First time ever I’ve wished I was a man 
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Have you heard of BCN younger women’s together? You may find it helpful.
- Younger Women Together: For people 45 and under. You can choose the support that suits you: online, one day or 2 day residential events. Find an event.
Glad you have a good breast care nurse and getting some mental health help. I’m in Wales and the nearest breast cancer support group was 30 miles away which is not sustainable. Living near the border I was able to find one in England 15 miles away. Meeting others has helped me so much. During treatment it was mostly online but face to face has been so important.
Take care
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Hi all. (Long post warning)
Well. Have had a bad week after week 8 double whammy paclitaxel and herceptin last week. With no ice packs because treatment was so delayed and also no blood results.
Neuropathy worse, easing in hands towards end of week, feet less improvement. Think massage is key.
So distressed by blood result refusal that I only had one decent night’s sleep all week. Very angry with tendency to turn anger inwards, plus tiredness so most self care went out the window.
Spoke to one of the nurses on unit by phone yesterday- she is 100% percent with me and agreed to act as my advocate on this with the team. Felt a bit better and slept a bit better last night. She also said she would make thorough notes of our conversation .
Today treatment number 9. Treatment not authorised because of worsening neuropathy- spoke to two nurses about how week had been on all fronts and how I was upset at suffering two avoidable harms last week - neuropathy and mental wellbeing. I told them that I actually felt bullied because I need info and want to be active in my care. They listened carefully and genuinely empathised and began advocating for me too. They also went rebellious and gave me my results for this week.
Feel so much better for being heard. They also worked hard to enable me to use ice packs with my treatment.
Of interest- they could find no record of the refusal - that will be interesting when the complaint goes in! They are required to document any refusal to share information with a patient with detailed reasons why. 
. I’d rather not complain- but think it’s important to raise for the sake of patients who follow behind me.
Treatment went ok. Now I’ve got the info I need I can up the self care again and take a bit of control back. Expect to sleep better this week too.
Thank you all for your messages of support on this, it really helped me stand up for myself in a good way xx
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So you did get treatment? Well done, ffs if we can’t advocate our own care who the hell can? Were you on your own too? You should be bloody proud of yourself! Really hope you sleep tonight xxx
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@story1 yes. They needed to talk to me some more about the neuropathy before they would authorise.
Again they listened to me - I was willing to risk it because a) it has been diminishing a bit after each vitamin d dose, b) I was confident they would get treatment started promptly, so ice packs would do their thing and c) now infection etc. are resolved I have more energy for self care (right nutrition, fluids and massage). Plus the neuropathy is sensory - not motor I.e I can still do up buttons ok etc.
Thank you, I was on my own. Thankfully, I’m not backwards in coming forward. I’m a bit notorious for speaking plain truths to power at work! Now I’m feeling physically stronger, I’ve got more energy to make my points clearly.
Am feeling so much more positive now.
Xx
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Brilliant. When it’s our bodies/lives and we do our research, it’s powerful @buggeringon not surprised you feel more settled now xxx
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@buggeringon how much vit D do you take and in what form? X
@story1 GP blood test showed me as deficient so they’ve put me on 50,000 iu once a week for 6 weeks, then they’ll prescribe a maintenance dose - don’t know what level.
A cautionary note - not all shop bought supplements are equal, quality is a significant issue. Vitamin supplements can be dangerous if taken when not actually needed and particularly whilst undergoing chemotherapy as they can interact with some drugs - whether chemo itself or drugs you’re taking for side effects. I would strongly recommend you go via gp if you think you may be in need. I did a boots home test first and shared the result with gp in order to get them to order the test.
Xx
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@buggeringon So sorry to hear about your week but huge well done to you for standing your ground and getting your bloods and having support of some of the nurses is really good. Hope you have a more calmer week where you can focus on you and treatment recovery and not all the stuff that really should not even be on the radar. So glad you are feeling positive.
@annabananna so glad to hear you have connected with some support and you are now connected with us also. Hope you havea a good week and your treatment goes well.
@cridders how are you managing after the new treatment . Hope all going well @story 1 have you had your first EC good luck with it. I think my rash is paclitaxel related. I have been reading up on it since you mentioned it. It has all settled down within 24 hours again, followed exactly the same pattern as last week. Glad I only have one more week left 
@emsd2025 thats really good news you were able to have your treatment in the end. I do not check my temperature daily. I have not been told to, except if I have any side effects to check but that is all.
Good luck to all on treatment this week. 
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Hi @cathie2 yes I had my first Red Devil yesterday and I was whacked all day, very weak. I had a good night and feel much better today just had my pegfilgrastim. My rash is slowly subsiding and my bloat has gone down, so glad you’ve only got 1 more paclitaxel left! What day is that? I’ve been up and about this morning but that could be the steroids, I’ll have a rest now and see how I am later. I did get a huge wave of nausea last night but I took a metoclopramide and it took it away xxx
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@story1 @cathie2 @emsd2025 thanks for the good vibes… sorry for the slow reply but unfortunately I was knocked sideways by EC.
Day 4 and 5 were absolutely brutal - fatigue beyond anything I have had so far so much so that I was totally spaced, hardly awake and didn’t leave my bed. I managed to make it to the sofa today and parents came to visit. But by lunch I still felt rubbish so called the 24hr line for peace of mind. They wanted me in asap so went in for bloods, full check over and ECG. Everything is borderline so no intervention just monitor. They gave me a choice to stay in and be monitored or go home and report back if still no improvement tomorrow.
I’m glad I got some reassurance but worried that this is just going to be how I feel on EC which feels like another draining blow. I know it’s naive but was hoping for an easier ride. And I look like a potato….
Am sure I’ll feel brighter tomorrow but for now I’m gonna be all up in my grumpy feelings… and eating some beans on toast.
Sending you all symptom free vibes xxx
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Hope you feel better soon @cridders xx
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