@jenny4 I know right we have to chase appointments and treatments it can be a bit much at times considering all we are dealing with. I’m sorry to hear about your blood test results, hope it get better on Monday, fingers crossed.
What is the moving forward course really about? Is it run by breast cancer now locally?
The course is run by Breast Cancer Now facilitators in various locations-in my case in a local cancer centre every 3 months. It’s a two part course: in part 1 everyone had a chance to outline their experience from diagnosis through treatment and how it has affected them, their relationships and work.
I think it was quite cathartic to have a chance to do that openly without having to sugar coat it. It also enabled us to make connections with women who’d had similar treatment or were dealing with similar challenges etc (those of us on Letrozole definitely had a bond!). There was also time to discuss sources of support for emotional and physical challenges post-treatment.
I can report back after part 2 but think most of that session will be going through the list of questions that we put together for the BC nurse. We’ve also created a WhatsApp group so we can keep in touch. For me just meeting other women who’ve come out the other side and learning how they’re dealing with their feelings and physical side effects post treatment was really helpful and made me feel less alone.
@jenny4 great to hear you’re finding the Moving Forward course helpful. I’d signed up for one last year but was too ill to go so now I’m starting one in April.
@bc0225 the BCN website has a searchable list of courses you can look for by putting in your postcode.
Recovery definitely isn’t linear, and I wish I’d realised that earlier before committing to returning to work in December (I had gone on to half pay so that was a driver but also I wanted to feel “normal” again). I’ve already had two further days off sick due to abemaciclib side effects, and now I’m signed off again with an unrelated condition (tynosinovitis, cant type with my right hand. This message is taking AGES to write with one finger on my left hand 
). And continuing appointments and trying to keep well make returning to work more difficult than I expected. I think we need to continue being kind to ourselves, and not run before we can walk, much as we may wish to.
@jenny4 and @nelly1 funny enough, I had a telephone appointment with my breast nurse today and that was the first thing she mentioned. What a coincidence. I will definitely check it out and attend sessions either virtual or in person. It sounds great and it will help to talk to others who are or have been on this same journey to share ideas and tips. Thanks ladies for sharing the information, much appreciated.
Hope you all have a lovely weekend!
I’ve just had part 2 of the Moving Forward course. We spent the first couple of hours in a Q&A with a breast care nurse from the local hospital. It was really helpful to have that time with her and to get clear answers to questions on a huge variety of topics. The rest of the session focused on ways to support ourselves going forward and how not to let our diagnosis dominate our lives. It was really helpful to hear what’s working for others. I’m so glad I signed up for the course and would highly recommend it.
I finally started Ribo this week after some issues with my neutrophil levels. On Monday (after a 5 delay to let my levels come up) I was told I had no neutrophils at all despite feeling really well. They re-ran the test with the same sample and I passed so I don’t know what happened there. So far I feel fine-does anyone know when side effects show up if you’re going to get them on the ciclibs?
I hope you’re all doing well. Thank goodness spring is on its way. @nelly1, I hope your hand is recovering-that sounds really frustrating,
Hello everyone. @jenny4 glad to hear the Moving Forward course was useful.
Im not sure when the side effects of the ciclibs kick in because I was given conflicting advice. I’m being told any side effects either stabilise within two months and will therefore remain the same for two years OR they tail off within the first two months. I’ve been taking Abemaciclib for three weeks now and my main side effects are diarrhoea with painful stomach cramps (no worse than periods) and tiredness. Loperamide works for the diarrhoea. I’ve had two days off work when I’ve been up all night. My kidney function is low, possibly not drinking enough so I’m increasing intake and have another blood test on Monday. Still can’t use my right hand (unrelated). The dose can be reduced or stopped if my kidney function remains low or the side effects aren’t manageable.
Good thing for today: friends coming over this evening. Not so good: my normally curly hair is growing back even more curly and very grey, and I now look like my own grandmother.
Hi, just checking in to see how you’re all doing. I’m not too bad, really tired today but I’m having more days when I feel I could have worked so that’s good, and I’m back to work next Tuesday on a 6 week phased return.
I just answered the door to a charity collection person who pissed me off by greeting me with “alright fella”. I’m still in a chemo beanie as I only have about 1cm hair growth, but being confused for a fella was a bit annoying so I said “no I’m not very well and this isn’t a good time” to get rid of him. Bloody fella! Might have to make more of an attempt at my appearance next week at work!
If it makes you feel any better I was once doing my shopping after work so I had my asda uniform on. I had a short hair cut at the time but it was a definite ladies pixie cut not this buzz cut effect I have now. I’d got bright pink nails, lipstick and a handbag hanging on the crook of my arm. This woman says to her child who was about to get in the way of my trolley “oh watch the man’s trolley”. Man?!? I’m 5ft 9 but I’m shaped like a woman. I just looked at her and she apologised 
So it just goes to show people are idiots.
I had my first radiotherapy session today. It was all ok and I’ve been liberal with the moisturiser when I came home.
@runnerjen dont worry. Everyone will soon get used to the new funky hair cut. It’s really hard at first but today was the first day I forgot my beanie and didn’t really care about it. I’ve probably got about a cm also. I’ve even had a hair cut. lol. 
Thanks for that @twinks77 and @moomoo716 we are now laughing about it. I walked to a GP appointment today, and when I got there I felt really hot so took my beanie off, no one batted an eyelid and I think I look good with my buzz cut! I think it’s not far off looking more like a bold, mid-life crisis haircut than a chemo situation! This afternoon I listened to a YouTube video of Dr Liz O’Riordan talking about cancer & work, it was interesting and they really got the message across to take it slow and steady when going back. Tonight at 7pm there’s a zoom thing with the breast cancer now folks on sleep, I might not watch live as my stepdaughter is visiting but I will watch the recording when it comes through because I either sleep ok or absolutely terrible and it’s going to be hard working after nights like that.
Quick question before oncology follow-up appointment this morning. Has anyone been told they will have scans after treatment/during tablet treatment to check whether cancer has returned? I won’t be, and I just wanted to check whether this is a national or just a local thing.
Hi Nelly. Looking good 
. I’m not having any scans other than my annual mammogram which is on Friday. I think it’s probably an individual thing depending on your type of diagnosis.
I don’t know what your hair looked like before but that looks really lovely on you & a beautiful colour x
Hi all. I’m loving the photos of your hair!
@twinks77 I’m glad the radiotherapy started ok, hope the remaining sessions are plain sailing. I remember being fascinated by the machine and just how much easier it was than chemo, I was lucky to not have any side effects.
@nelly1 as far as I know I will just get an annual mammogram on my left (proper) boob. I don’t know when though. I might find out next month when I have a moving forward call from my breast cancer nurse.
Hi all, I’ve not disappeared but been off radar since having the results in Decemeber following the ALND. Unfortunately there was residual cancer in the nodes even after 8 chemos - bit of a blow. Started Letrozole before Christmas, seems to be going well. Coming to the end of 3 weeks radiotherapy. Starting abemaciclib and zometa end Feb. Lovely photos of hair growth. Really found the no eyebrows and no eyelashes phase so hard but all back now. Hair on head is growing nicely too. Fab to hear about the Moving Forward course @jenny4 - I’ve booked onto the online one in March but would be great if I could find a face to face one - closest at the moment is about 60 miles away but I know they did do one in the hospital just after Christmas. Going to take time to strengthen again and adjust to adding abemaciclib and zometa to the mix before thinking of going back to work. I’ve given myself a target to walk 1000 miles this year - 3 miles a day - maybe as a way to mark my 50th birthday - lol! Been lovely catching up and realise how much I’ve missed reading your posts. Take care all x
It’s great to hear how you’re all doing and to see the regrowth pics-you all look fab. It’s such a relief to have eyebrows and lashes again, isn’t it?
@rach49 I’m so sorry that your results weren’t what you’d hoped for. That must have been hard to hear. I hope the belt & braces regime of meds that they’ve lined up for you doesn’t come with too many side effects. I’m two months into Letrozole and nearly through my first cycle of Ribociclib and apart from abysmal sleep I feel pretty good as long as I keep moving.
@runnerjen I’ll definitely look up the BCN episode on sleep as I’ll try anything to get a better night’s rest. I hope your return to work goes well. I’m enjoying the balance and have benefited from a really gentle phased return. I am so grateful I changed from a very stressful job to this one before getting diagnosed though as there’s no way I’d have been able to go back to my former role.
@nelly1 i know this is too late for your appointment but I have been permitted biannual ultrasounds to check for recurrence (I’m flat so there’s nothing to mammogram). I had one a couple of weeks ago as I was in meltdown about some changes which turned out to be benign and radiotherapy related. I wish there was better routine surveillance for peace of mind and early detection. It sounds like in the future liquid biopsies might help with this but we’re not there yet.
Is it just me or does chemo seem long time ago now? Last week I met up with a colleague who was diagnosed just after my last infusion and who is now on her 7th cycle. talking to her reminded me of how shitty it was at the time and how focused I was on getting to the end. It made me count my blessings that I got through it and now largely look and feel like myself again though with a greater appreciation of life and the people in my life who were there for my family.
It does seem to be getting further behind me now too @jenny4. I still struggle to get cancer out of my thoughts for long, but I am getting better at forgetting about it and I think returning to work will help with that. I even occasionally put it out of my mind so well that when I remember it I am almost in disbelief that it happened.
Tomorrow is my last day off sick then back to work Tuesday for part time hours for a 6 week phased return. I’m mostly looking forward to it, returning to a more normal routine. I’ve got loads of holiday to use as well, as they are letting me keep all last years unused leave. So anytime I feel I need a break I can book some days off to recharge. Have a good week everyone x
Hi everyone @jenny4 I agree, chemo seems so long ago (as does radiotherapy) I very rarely think about it. And the surgeries are a distant memory! I’m not sure I feel back to normal yet because I’m still very tired due to the ongoing treatment I think, still falling asleep in the day every day, and I have a lot less energy than I used to. I do things but I used to do a lot more. Because I was close to retiring anyway, I’m now off sick again with an unrelated health issue and I was moved to a new project when I returned, I’ve not really got back into the swing of work. I know that would have helped.
I think I will ask again about ongoing scans/monitoring. It makes sense to me, given I’ll be having preventative treatment for the next ten years.
@runnerjen good luck for tomorrow. @rach49 I’m in awe of your 1,000 mile target, having failed to complete 62 miles walking in January.
Grateful for: the fact we’ve now started looking at houses (a pre-diagnosis plan, along with retiring) and that’s helping me to focus on the future and the fun of making a new place our own. And I’m visiting my daughter in Kent this weekend, travelling first class on the train whoop whoop, and we have a whole programme of events planned.
Well folks it’s day two of being back at work and goodness me I’m amazed at how tired I am. Why am I so surprised by this? Surely by now the penny should have dropped with me that cancer fatigue is real, big and here for the long term? Why does it always seem a shock how knackered I can get?
My first half day yesterday ended up a whole day as I couldn’t gain access to the online systems I need and also needed a new site pass / ID card, which ended up needing two trips to the relevant office and hence I ended up there all day. Thought I was fine but after dinner I was so exhausted I went to bed at 7pm.
Today I did just do a morning and still not properly online so I haven’t done any actual work yet. I’m now exhausted again. Granted I’m up at approx 5.45 for work in the office, tomorrow I’m working from home so can stay in bed a bit longer.
I suppose I thought that as I’ve been fine lately at home, enough energy for housework, running and starting going out a bit more that I really should be ok going back to work. I ran / walked 10 miles on Saturday and was fine, so I thought work would be easy. I’m not even doing any work yet and I’m knackered! How can I be doing so well with running then get so tired sitting in my office?
Anyway, here I am just being bewildered and furious at cancer fatigue. My most senior boss apparently wanted to do a guard of honour thing for my return yesterday with colleagues lining the corridor!!! Thankfully my supervisor told him not to, I would have been so embarrassed but I did tell him today it was a kind thought nonetheless! Everyone has been lovely. It is so warm in the building I haven’t been wearing my beanie hat, I have felt pretty confident with my buzz cut look, and people have been thoughtful and kind. I do feel lucky to be so well supported. Just livid about the energy deficit!!! I hope you are all doing well and at least getting by on the energy reserves you have. X
