Hello everyone - hope you are all doing well and had a good holiday weekend.
I had a great holiday and have now left my job. Having a bit of a break before I look at what’s next. I just feel I’ve changed and I can’t find my feet if I’m constantly dragged back and to be frank my employer wasn’t the greatest through my treatment. So I’m feeling quite liberated.
I start on chemo tablets 18th April as I had a bit of residual but its an insurance policy and i figure best to take what’s on offer. I take that for 6 months. Lets hope I tolerate it but I’m told its nothing like the chemo we have all had.
So for now a few more mini breaks before I get stuck into the tablets.
Big hugs to you all and hope things are settling for you all. What a strange experience that brought us together but thank goodness for the support here
I have a date for my redundancy 31 August 2024 end of school term but am signed off until them. In my head I feel that I’ve already left. I am like you trying to arrange days out or a week away in a few weeks in between treatments. I bet you feel so much better knowing it’s now finished. You can take time to convalesce and decide what is for you in the future.
Good for you! Its a brave decision but i think we have to do what feels right and I haven’t regretted it after everything I’ve experienced over the past year,
Hello all. I thought is just check in and am pleased to see familiar names still here. I’m glad you are all progressing with your treatments. I’ve just re read the Peter Harvey article which I think is the best assessment of the experience that I have seen- I think all breast care people should read it!
I’m still here, aches and pain’s from Herceptin I think, so hoping they will ease after my last one in June. Still have problems with neuropathy but have an online meeting with The Marsden on Monday about it so I’m hoping they might be able to suggest something else to try, maybe acupuncture?
I’m definitely feeling that apprehension about life that the article talks about, the emotional after effect of everything seems to be hanging on for a long time. I’ve never had a floodgates open moment, and haven’t really cried at all, maybe I need to. I feel like I’m a bit stuck really, not moving forwards, when everything is improving and people expect me to be back to normal… I’m just going one day at a time, I guess that’s the best way.
So nice to hear from you. So pleased you have nearly finished the Herceptin and hope that you have the help you need for the neuropathy.
Like you I’m on Herceptin and I’m also experiencing lots of aches and pains, aswell as hot flushes. I’ve been taking Letrozole for nearly 3 months so it could be that as well.
I agree the article that @rachel60 shared is great and I have read it several times. I don’t feel like I’ve finished treatment until the Herceptin has finished although it’s better than chemo. The key word was convalescence and I need to concentrate on me.
I seem to cry at the drop of a hat now especially if I talk about the cancer and treatment. I’ve had 5 sessions of counselling from work but it didn’t help. I’m hoping to have some more with Penny Brohn cancer charity and hope that is better. I think whatever works for you is best, one day at a time or planning for the future. As far as being back to normal, will we ever be what we were before?, don’t think so. I think we are forever changed and we will at some point find a new normal at some point.
I’ve had a few so called friends let me down and it’s getting me down. I know I need to put it behind me but it has really hurt they weren’t there for me when I needed them most. I’m hoping the new counsellor can help with that.
Hi naughty_boob, sorry it’s taken me a while to reply to you. It definitely is a strange new world we are in now- I hope the thought of retiring gives you hope at least you will be able to concentrate on getting better and having the convalescent time you need. I’m thinking of trying to get some counselling and looked up the Penny Brohn website that you mentioned - their headquarters is in Ham Green where my brother lives! Perhaps I’ll think about doing one of their recovery retreat days and stay with him. I just don’t seem to be able to shake off a sort of apprehension and anxiety even though I’m doing nice things and life has definitely improved from last year in many ways. I’ve got a real feeling of ‘what’s it all for?’. I hope you are feeling a little better now. Xx
Don’t apologise for not replying sooner. You do when you can.
I visited Penny Brohn for their Menopause Well-being Day which I enjoyed and allowed me to meet with others in a similar situation. I would highly recommend their services. I live just across the River Severn and the nearest support services is in Cardiff so Penny Brohn is nearer for me.
I did feel so much better that I have the redundancy/retirement. Over the past week some strange phrases have come out of my mouth and I didn’t realise until I saw my husband’s laughing face. There is no way I can teach if I have no control of what I’m saying!
Hi lovely, so sweet of you to reach out, thank you.
I’m doing ok, I think, it’s a journey… I finished radio back in Feb and currently on 3-weekly injections. Started Tamoxifen in Jan too. My yearly MRI is in the beginning of May which is absolutely wild…
I’m (very) slowly finding my feet again and navigating survivorship. I’m in counselling and also doing this 4-week group course all about life after treatment. Overall, it’s very up and down- one day I’m absolutely fine, the next I’m an anxious mess.
I’m still ok with my decision not to have reconstruction, got my prosthesis the other day which I wore to a wedding yesterday. I felt fine, but then I’ve never been known for my cleavage haha So we shall see, I’m hoping I’ll continue being ok with it.
It’ll be a year since my diagnosis on the 27th and my one turns 2 shortly after so I’m looking forward to hopefully having a more positive spring this year compared to last.
I did well with the cold cap so mostly avoided loosing my hair, but the bits I did loose are coming back now so I’m forever battling these random hairs sticking out of the most random places on my head haha My nails and lashes are still recovering too, I’d say.
How are you doing? How are you finding this post-treatment life? Xxx
Hey @naughty_boob thanks for checking in with us! I finished radiotherapy at the end of Jan - found it okay, much better than chemo. I’ve been on exemestane and Zoladex since Jan and am navigating the achey joints/hot flushes, but finding that exercise really helps both. I went on holiday to Croatia and then Slovenia two weeks ago and it was a well needed break that made me remember how big the world is again. I haven’t heard when my next scan will be (I have been told I’ll be having yearly breast MRIs for 5 years due to my age/dense breasts). I may chase this up, now you’ve mentioned it. I really enjoy hearing how you are all getting on, so please stay in touch xx
Yes it’s definitely journey and like you the 3 weekly Herceptin knock you back a bit for a few days. Again like you one day I’m fine the next day I’m really down. I find I’m crying whenever I mention my diagnosis or treatment.
Even this week a lovely nurse came to my home (NHS outsourced to private company, apparently it’s cheaper!) to give me my 11th Herceptin and we were talking about bruising, bleeding and fracture risk after the dog ran into my leg and ended up at minor injuries. He said ‘well you’re cancer free so your risk is not different to anyone else’. This comment knocked me, I know the cancer was removed during my surgery in July and chemo, radio etc is adjuvant (preventative) treatment. But it doesn’t feel ‘cancer free’. Maybe because I’ve just gone past a year of finding the lump and approaching a year since diagnosis next month.
I had some counselling but didn’t really gel with the lady and she mainly signposted me to things I already knew. We did resolve an issue I had with an absent friend during treatment and encouraged me to contact her, unfortunately the response was the so called friend was to blame me for not keeping in contact with her! I’m now waiting for some counselling with www.pennybrohn.org.uk
What is the 4 week course you mentioned? I have applied for the Moving Forward course in July in my local area, it was quite hard to find a date around continuing treatment.
Lovely to hear from you. Croatia and Slovenia sound lovely. The hot flushes and achy joints must be so hard with you being so young compared to me. I’m 55 and was already menopausal before BC.
Did you manage to arrange something special for your belated 30th birthday?
I hope you hear about your scan soon. Dr Liz O’Riordan has a YouTube and Podcast and talks about ‘scanxiety’. It’s nice to know we will be checked but when the scan comes around I’m sure all the old feelings will resurface until we get the all clear.
I’m waiting for genetics to come back, fingers crossed it will be negative. My daughter is 26 and she will already receive mammograms from 40 not 50 because of my bilateral diagnosis and if genetics is positive it will be MRI from 30 and mammogram from 35.
So lovely to hear from our group. We are all coming up to that year milestone. @Jess_1@Florence_87
I often wonder how you are all doing and so pleased to hear of holidays, parties etc. a bit of normal life.
I think we have all discovered that life is uncertain and some of us (not me!!) far too young to be in this position. The fact we’ve all come through some tough treatments is incredible. Last week I went into the Marsden for bloods and realised that I no longer felt I belonged there as I did through my treatment. My world was outside their door. So maybe that is the start of a mindset shift.
A long way to go but small steps are amazing so we must never forget the progress we’ve made. Thanks to science - and our group!
Thank you @naughty_boob for checking on us. My mammogram is booked for June. I’ve been working full time since January and it seems I don’t have time for much more as I still get fatigued. After 8 PM that’s it Treatment ended in October but I continue with Tamoxifen. I had a bit of a scare as I had ongoing rib and hip pain but my bone scan came clear. Maybe it’s the Tamoxifen, age or hormones…To be honest I’m a bit stressed about this mammogram because my tumour was only seen after ultrasound, not in the mammogram. I wanted to have a scan or MRI but I hate to have to ask…I really need to push myself to advocate for own health and I hate it. On a positive note I started weight lifting and jogging and I feel stronger. I hope all the ladies here are doing well and thriving
I’ve got the same issue with my hair… I managed to keep most of it but now I’ve got these new, really curly ones sticking out on the top of my head and sideburns (I guess on the places the cap didn’t touch)
Good to hear from you @rachel60. I felt the same way when I went to the Royal Marsden for my bone scan. Sad to see it was full…so many people at different stages of this journey
So lovely to hear from you. I can imagine the upcoming mammogram is scary. I’m going to feel the same come July😌 My second tumour was only found with MRI, so at a recent chat with the breast care nurse I asked if I would have an MRI as well as mammogram in future checks. She said no and tried to justify it by saying the radiographers would have looked back at the ‘clear’ mammogram and compared to the MRI to look for the tumour and why it was missed. I’m not totally convinced but at least I’m having checks annually.
You are doing great back working, don’t forget your employer should make reasonable adjustments for you, if required, as you are classed as disabled under the Equality Act 2010. It can mean starting or finishing earlier or having more breaks etc. it may help with the fatigue.
Glad you had a check from your pain and it was all clear .
I finished radio back in Feb and currently on 3-weekly injections. Started Tamoxifen in Jan too. My yearly MRI is in the beginning of May which is absolutely wild…
same boat
Treatment ended in October but I continue with Tamoxifen. I had a bit of a scare as I had ongoing rib and hip pain but my bone scan came clear. Maybe it’s the Tamoxifen, age or hormones…To be honest I’m a bit stressed about this mammogram because my tumour was only seen after ultrasound, not in the mammogram. I wanted to have a scan or MRI but I hate to have to ask…I really need to push myself to advocate for own health and I hate it. On a positive note I started weight lifting and jogging and I feel stronger. I hope all the ladies here are doing well and thriving 
.