Glad you escaped to the seaside and forgot about all this for a minute 
there will be many more minutes like that when your through treatment look forward to those 
Shi xx
Hi ladies, it’s good to hear that you’re all progressing with your treatments, and @naughty_boob that you are home and slowly improving. You seem to have been very unlucky with the side effects you have had, I hope the rest of the Paclitaxol goes smoothly. I’m having mixed feelings reading all your comments, as I’m pleased to hear of your progress but it also reminds me of the whole chemo experience and makes me worry that if I have a recurrence at any point it could be so much worse. I think everyone thinks I’m almost back to normal now, as my energy is improving and my hair is starting to grow again, but it’s not that simple is it? I’ve been feeling quite down for the last week, not sure if it’s just the winter blues that I get anyway, or the Letrozole having an effect, or a sort of anticlimax and realisation that this is it now- I’m supposed to be grabbing life with both hands and really making the most of it but somehow I don’t seem able to do that. I’ve just signed up to a Moving Forward course in January, so perhaps that will help. I always find Christmas a bit depressing somehow, ( too many years working in retail) so I’ll focus on getting through that one day at a time. Hugs to you all xx
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Hi @Artylady
So nice to hear from you. After everything I’ve just had 9/12 Paclitaxel. I will be even more careful of food, hand hygiene and masking from now. I need to get the last 3 done and not catch any more infections, hopefully the 10% reduction will help as well. I had 8 weeks that were hard but manageable, hospital admissions were not fun and will do everything in my power to prevent going back in. As far as more treatment I will deal with that when I can come that but I will consider my age (54 now) and quality of life. I’ve seen so many really frail elderly people who are obviously struggling with others issues as well as the cancer and receiving chemotherapy
heard so many people say that your treatment is done so you should be back to normal, obviously they’ve never had cancer. It’s OK to feel the way you feel. We all deal with things differently. Reading from many charities like breast cancer now, moving forward, macmillian, and Penny Brohn I’m not sure we will ever be the same as before. Yes we can live our lives but cancer will still be there for many years, annual checks and worry of return or secondary. If I have learnt anything just tell them you’re not Ok and may never be.
I had a call from the breast care nurse at my local hospital that did all tests and surgery to see how I was. It’s nice they check in on me, there isn’t a nominated nurse for oncology.
I hope the Moving Forward course helps. It might be worth talking to Breast cancer now Nurse before your course starts. I’ve called only once and the nurse I spoke to took the time to go through everything with me without any distractions.
Keep in touch. 
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Thanks @naughty_boob - it’s so nice to have kind words from someone who understands!! Much appreciated x
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I agree with you @Guida being more fatigued than expected after the chemo. Fortunately the oncologist I spoke to was reassuring as I was worrying and getting upset that even a short walk was really tiring.
Slowly I am starting to feel better now though. Started Tamoxifen which I may be taking for 7-10 years, but have an appointment with the hormone therapy team next month. The night sweats I’ve developed (probably as a side effect) are stopping me sleeping well which is probably the worse thing for me now. It does seem like there’s constantly something to be thinking about.
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I hear you I feel the same. A bit lost.
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Hi @Guida
How are you doing? Have you finished all your treatment?
I have 3 more chemotherapy infusions and like you had lumpectomy before so only have to hope it’s worked. Radiotherapy due 10 January for 5 days, Letrozole or Anastrozole after that but not sure when I start that. The team haven’t really mentioned it. I have to continue with Herceptin until September 2024 but at my last clinic appointment it looks like I don’t get much follow up with that. I will have MUGA scan for my heart in January then every 4 months. It seems once the chemotherapy has finished that’s it pretty much for follow up.
I not sure when the best time is to join the Moving Forward course as I’ve still got a lot of treatment, I may give a breast cancer now nurse a call and discuss. So many people seem to be lost when the clinics and checks stop.
So many in the June chemo starters have now finished but if you want to chat there is a private message chat ( click on the person’s name/icon and click message)
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Hello. Thanks for the check in. Been feeling a bit lost and down in the dumps since chemo ended. Weird I know. I thought I’d be thrilled! Ph and dreadful acid reflux since my final EC… yuck
All scheduled for lumpectomy on 2nd January and great surgeon which is reassuring.
How are you? Recovered? Sounded like you really went through it.
Xxx
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Hi Jess - just to say a late thanks for the steroid tip. It helped my final EC!
Hope you are doing ok. X
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Naughty_boob do check with bcn about moving forward course there are face to face and online, you can attend then if day 1 doesn’t feel like quite the right time, you can always book on again bcn’s here for you, now and always Shi xx
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Hi
Glad your last EC went ok. Funny how some side effects don’t resolve once chemotherapy has finished. Hopefully the acid reflux will clear up soon.
I’m much better now, had chemo last week but the centre in Cardiff have called today to try and change my Thursday appointment to an outreach clinic. Last time I went there I had a bad reaction and waited an hour and half for treatment to resolve it as there were no doctors on site for chemo. Staff even went off the main hospital site to get any doctor to authorise medication and couldn’t find anyone. As you can imagine this is causing anxiety and flash backs of what happens.
The staff in bookings were quite rude, to,d me to think of the 15 people who still don’t have an appointment and that the clinical team should not be saying I need to be at the main site. If the clinical team can’t make that decision, who can? I still have an issue with my blood results for my liver but the booking team wouldn’t listen. Told me if I’ve not heard by 11am tomorrow I need to call them. I need to take premeds at noon. So annoying I don’t get many good days and now I’ll be waiting for the phone to ring! They don’t seem to care that I need to arrange with my husband his work arrangements and the dog needs to be organised. They tried to say I didn’t have an appointment for Thursday, it’s written in my card, and the. Said they find out which nurse gave me the time and date!
I’m going to look to see if there is a patient liaison team and may call them in the morning. Having chemotherapy and this is stress I don’t need and the way I was spoken to makes me feel I was in the wrong.
Sorry for the rant but I feel so anxious, I’m hoping it doesn’t pray on my mind and I sleep tonight as come Wednesday the steroids will start and affect my sleep for 2/3 nights!
Hope you enjoy your time before your surgery. Do you have any plans?
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Poor you. I remember the problems you had last time and with no doctor around. Chemo is tough enough without flashbacks and fear. Hope patient liaison can do something. Sad but we have to be our best patient advocate but tough when not feeling well and the stress of what you’re going through.
I’m going to try to enjoy the holiday and doing more exercise to rebuild my strength. Realising it will take awhile! family gathering from various parts of the world which will be fun - and noisy!
Keep us posted. We’re still here for each other
Xxx
Naughty_boob, you absolutely take that further, they have duty of care to you and that in my opinion is unacceptable to be spoken to like that. You need compassion, care, understanding and their help not to be spoken at like a naughty toddler. Sorry to read that. I’d go to the head of the department rather than to pals office. The head of department needs to hear how patients are being spoken to. Not acceptable at all in my opinion Shi xx
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Thanks @Shi . My husband suggested I talk to the consultant’s secretary. I wasn’t the first to have an issue with them. She escalated to her managers and head of booking team.
My consultant was ill and no responding to emails, so she emailed another member of the team, who called at lunch time today. Unfortunately I have to go to the outreach clinic tomorrow or no chemo. I’m only just over 1 week out of hospital and only had 1 chemo since so should have been at the main site. My bloods have improved so she reassured me it would be ok at the outreach. I stilll have concerns considering wha5 happened last time, but I don’t have a choice!
Hopefully this escalation will prevent others being treated in this way.
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Naughty_boob sending you positive for tomorrow and hopefully you have a better experience and usually the consultants pa’s are an amazing resource of help and experience and will assist you with kindness and compassion you raising will hopefully ensure you and others are treated with more compassion and respect Shi xx
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Hi @naughty_boob ,
So sorry I’ve not been in contact. Where are you up to with your treatment now? Did the raised lump on your PICC line site go down? I hope you’ve been able to spend some good time with your family. Sending you loads of love xxx
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Hi @Geo23
I’ve just had 10/12 Paclitaxel, I had a couple of weeks off as I had a temperature that wouldn’t go away. I’ve found that I have 3 bad days and 2 good days and then I’m back in the chair. I shall be so glad when it’s all finished, 2 more to go. Radiotherapy planned and booked for 10 January so hopefully have a good recovery time and nice Christmas.
Thanks for asking. How are you?
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So I’ve had 10/12 Paclitaxel today at out reach site and it went well. But overheard nurse saying they’d had several people have their app change by booking team. I called one of them over who was on the ward last week and explained what had hall to me, she said she saw on the notes. I advised her that the booking team were saying g the nurse shouldn’t have given me the appointment last week, she said she’d stick up for the nurse( I named her to the nurse) as I feel they need to know what the booking team are saying.
I the got given next weeks appointment in a hospital 40miles from home which could take 3/4 hours in the car, never been there before so need to find parking and ward. I was 6 hours today as there was a delay starting and some issues with timings of arrivals etc. I tried to phone booking when travelling home for over 20 minutes and it just said they weren’t available. The nurse I spoke to on the ward had advised there was a concern/complaint dept I could contact as they need to know what is going on.
I phoned and they said somebody would call back. They called back 3:30 and agreed to should be travelling that far and past two other cancer centres to get there. I said I was considering stopping treatment as this is so much hassle and shouldn’t have to deal with this. He assured me that he would get my next 2 appointments so I could finish my treatment.
He said that the management of the booking was moving to him from tomorrow and was aware there were issues especially relating to geographical locations. I feel better for speaking to him, I admitted I am a worrier and will wake up and ponder the situation which is not good when I need to sleep. He said he called tomorrow or Monday with appointments. I shall try and put to the back of my head and be ready for the weekly side effects.
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Really hoping and keeping fingers crossed you get those next treatments booked. Hope side effects are not too bad. Keep us posted.
Xxxx
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