So sorry to hear you’ve had a bad week and been in A&E, the worst place for all of us. Maybe contact your team about a PICC line. I have one and had no more pricks apart from Covid and flu vaccines.
I hope you feel better soon. Remember you are strong, this chemotherapy is not easy but you’re doing it.
@milly156 glad you better and your bloods are all ok ready for your next chemo. What did your team say about your A&E experience? Were they able to offer a safer alternative if you need it again?
That’s so true, I think that’s what upset me such a lot. So important to have trust and good communication. So glad you’re doing better now. How is hubby doing too xx
Thank you Frazzle. I’ve had the same experience with nurses, some amazing and some who shouldn’t really be in the job…yes the consultant was reassuring thankfully.
Frazzle, that sounds very tough. Really hoping that’s your extra tough time out of the way and that things improve for you from hereon in. Must be horrid going to A and E when you’re already feeling vulnerable. Big hugs xxxx
Sorry to hear you had a bad experience, it’s definitely not what you want. I have bothered the nurses and pharmacy so much.
Am on cycle 1 of Pembrolizumab, Paclitaxel and carboplatin. Very achy yesterday after gcsf injection.
I also take steroids on 3 days post 24h Chemo in morning and Lunch time but it seems that’s it for that , also acts as anti sickness the dexamethasone.then I have metoclopramide 3 times a day for anti sickness but I struggle w sickness and nausea in evening and at night/during sleep so will be calling them back again today !!
Hi Pinklili
Good on you for being on it.
I’m guessing that from the sounds of your regime, you have TNBC too? Great you have immunotherapy, I couldn’t have that unfortunately, as they only discovered it in my lymph node post surgery and I understand immuni has to be given prior to surgery.
Are you having the steroids weekly or once every three weeks?
Xx
Hi Daffodil1
I have triple negative BC yes. Stage 1 grade 3. Lump in breast no allegedly in nodes but nodes are large (could be because of I had a hand operation in August)
I’ve had the steroid in IV on day 1, then for 3 days post chemo AM and PM.
New week next week, I can tell you when I go I suppose ll have them again but it’s different drug, EC I think but not sure xxx
Thanks for all that info, naughtyboob. Really glad to hear you are a third of the way through. I’ve had 5 so far out of 15 so the same I guess! Though timing wise I am only 4 weeks into 21 weeks …
Good you have feedback about the nurse too. I think some of them can’t be bothered and are in the wrong job, whereas others are very kind indeed.
My son’s feeling really poorly, has strep throat and a very high temp, so back off to give him a masked cuddle…
Metochlopramide didn’t work for me they swapped to Cyclizine and that’s much better. I also had diarrhoea and got given Buscopan for the cramps and you can’t take that with metochlopramide listed as contraindication in the leaflet.
a good book that helped me is surviving triple negative breast cancer by Patricia prijatel it’s not for everyone but it helped me and All to Live for by Emma Hannigan which also helped me Shi xx
Yes naughty boob! Horrible cramps for me and I’ve been swapped over Cyclizine and tonight I already feel better and was actually looking forward to my food and a few sweet treats but god I desire to eat everything bathed in salt! Makes me feel better I am not the only one about! Metochlo… and I may sleep tonight!!! I can tell the cyclize is working as I noticed I so over salted my food!! Constipation is there and diarrhea not come yet. I am lactose and gluten intolerant but treated myself to a frozen chocolate mousse, that might take care of the constipation naturally A kind friend sent a care package of Cooked food The motivol kinda makes me feel a bit sick to the taste. Was recommended prune juice to try.
I agree with the salty food, I’m normally a sweet person. But with the change in my mouth the salt seems to satisfy more. I even bought a cheese with chives for a sandwich to eat before my chemo as the oncologist said not to eat something you really like when you get nauseous it can put you off it permanently.
The extra dexamethasone seems to have prevented the worst of the diarrhoea.
Great the Cyclizine working well.
Third trip to Velindre this week had a red rash under the dressing and just to the side, they believe the district nurse ripped off the dressing and took off top layer of skin. They took the dressing off and put some barrier cream underneath and redressed. They gave some barrier cream to give to district nurse and asked me to remind them about how the dressing should be removed. It was a different nurse this week and she was so much quicker and a bit indifferent to my latex allergy she bought to pairs neither were sterile which should be worn to apply new dressing to prevent Sepsis. The nurse who put the PICC line in said it’s my PICC and I need to take responsibility for its care with all healthcare professionals. The nurse today knew exactly who she was and said she was just about the say the same. They did say if the district nurse does it again they would prefer me to go to them but it’s over 70 mile round trip, so this week we’ve done over 210 miles. Could have been another 70 miles if the doctor who called on Thursday had not got the GP to sort some pre chemo drugs.
I have a latex allergy too and seem to have developed a plaster/glue allergy. They did put a plaster on after the Port fitted which I didn’t have a reaction with. I’ll try to find the spare dressing and name. It might help.
It’s annoying you’re so far from the hospital but good job you had nice nurse and she knew the signs so you could get it sorted Asap. I am local to the hospital I fought to have one near me. They also wanted to send me an hour away from me in Esltrre but am near Windsor and Slough and lots of hospital can do .chemo it delayed my treatment for a week but am glad I did that cause so far I’ve been at hospital omev every day for medecines changes or gcsf injection which I won’t be able to do myself!
Hope your skin settles. Someone said to butter yourself up when your shower before and after. -(when you can shower ) That’s a good tip!
Bad night of insomnia decided to follow @annemanc and sign up for the Macmillan 100 miles in October. I’ve linked my Fitbit that tracks 24/7 so even going to the toilet is included!
I’ve had a few people who have offered the ‘ill be there for you, whatever you need, just say’ but if your anything like me you won’t ask. Found this great article on cancer care parcel
It says that need to come to terms with own emotions but not to burden you and also don’t offer help if you don’t follow through.
I’ve sent my charity link via text to everyone including those not engaging. Considering sending the article as well. What are your thoughts?
Thanks for sharing as I feel I’ve become"needy" but I feel it’s normal it’s just hard to verbalise it and partner and I don’t live together so having to have those conservations to ask him to be there to help, we need to physically sit down and plan when he could take day off to help. I am near Heathrow and he’s east London working in Essex, has to be there physically as works in a lab, not easy.
Suffering a bit from gscsf injection today. Pain in body like flu body pain. Will have a nap and hopefully better later. Nauseas and constipation is the hand I’ve been dealing with week! Hopefully it settles further down the line !!!
Love the article thanks for sharing. Have the best weekend too as best as it can be
Don’t ever feel bad for being needy, you are having chemotherapy and the emotional aspects of just having and dealing with breast cancer. Maybe share the article with your boyfriend, it may help him. If you’re a normally self sufficient person it’s not in your nature to be needy or even ask for help. That’s me, I’ll try anything myself first.
I feel sad and let down by others who have appeared to have dropped me especially one that I know supported another friend through bowel cancer, who unfortunately didn’t survive. This could be on her mind but my prognosis is treatable/curable with no lymph node envolement. Although we all know we’ll never say ever again, there is always a risk and we have to live with that for the rest of our lives.
That’s very kind and I may tactically share the article! Feel a bit better after nap but stomach is still not happy for some reason. More laxatives needed I think.
Yes I am like you very self sufficient lady needing temporary assistance
@pinklilli3s I hope you feel better soon. Tummy issues have so far been the worse side effect. I think we are all struggling to express what we need and ask for help but needs must. You will undoubtedly return the help given in time.
@naughty_boob sorry you are feeling a bit let down by some of your friends. The ones who have stepped up for you will be friends for life and others…well you can just see how you feel about them when you come out the other side. Perhaps they will have been replaced by some better ones and you won’t look back.
a good book that helped me is surviving triple negative breast cancer by Patricia prijatel 
I can tell the cyclize is working as I noticed I so over salted my food!! Constipation is there and diarrhea not come yet. I am lactose and gluten intolerant but treated myself to a frozen chocolate mousse, that might take care of the constipation naturally 
A kind friend sent a care package of Cooked food 
