Good luck @rachel60. Sending you good vibes♥️ So good to have the results straight away. Less scanxiety…nobody likes the wait. Mine is only in June.
2 Likes
Thanks Guida. Keeping everything crossed for all of us x
3 Likes
So good you get the results the same day. I have to wait until July and not sure how it happens in my health board. I will be hoping for same day to prevent anxiety.
The breast care nurse recently said not to worry if you get a call back scan as they have to navigate scar tissue after surgery and can’t compare with the pre surgery scans. Not going to stop me worrying if they do😌
I’ve gone back to helping at the local Foodbank, I do most weeks on a Wednesday morning. It’s nice to have some sort of normality. Some things I can’t do due to sore chest wall, waiting on a few referrals for menopause, lymphoedema and physio.
Otherwise enjoying the warmer sunny weather, with lots of SPF, long may it continue. 
2 Likes
Hello everyone,
I thought I will peek my head in and say hello and I hope you are all doing well?
I am doing really well - more than half way on my Herceptin now scheduled to finish mid September. Finally had my echocardiogram @naughty_boob and all is well.
I have also arranged myself a DEXA scan for June just to check what state my bones are in post chemo/radio etc.
I am running the CRUK race for life in July!!
My mammo is in November 
@rachel60 good luck with yours.
I am approaching Diagnosis day anniversary May 17th! All still very surreal.
Some days I feel in a limbo and think am I moving on?? Do I know how to?
Am I anxious of recurrence? Then I do a pep talk to myself….
What a journey it has been!!!
Sending you all love, peaceful and healing thoughts - stay well xxxx
2 Likes
Hi @Dhillman
Great news about the Echocardiogram.
I am also approaching diagnosis day 15 May…trying to do something nice to change the narrative of the day. Unfortunately never will forget as it’s my wedding anniversary the following day.
I’ve done 12 out of 18 Herceptin, which is 2/3 done. It’s great to know I have less left than I’ve had.
I have booked for a BCN Moving Forward course early July, only one I could get face to face around Herceptin dates. I’m hoping it will answer some questions. I still feel I’m in treatment due to side effects I’m still having and that limit what I can do. But I’m also so much better than during chemo. So I suppose I’m also in limbo.
Have booked some more counselling as still not sure how I’m dealing with everything and possibly of it coming back.
Hope everyone is well as can be
4 Likes
So good to hear everyone is somehow getting through these bumpy times for us.
I got my mammogram today. It was painless and the person doing it was so lovely. 30 minutes later which seemed like 3 hours, my consultant got the mammogram up on the screen (with the original one a year ago showing a large white cancer area). No cancer seen today.
I felt weirdly numb. Everyone was really excited but I just said oh that’s good. Is that odd? It just seems still such a long way to go.
Anyway, it was good news. I see my surgeon in 6 months for an ultrasound and my next mammogram is in one year. Anything in between which worries me, let them know!
Really now keeping everything crossed for your mammograms coming up.
Xxx
5 Likes
@rachel60 really pleased to hear your very good news. I know what you mean, I would feel the same ‘oh good no cancer, but ….
@naughty_boob what kind of side effects are you still experiencing?
I am glad you have joined the moving forward course and having counselling. I should consider something I suppose just so I don’t feel too much in limbo or projecting for the future.
I have some pins and needles but they are improving, lump from scar on my lumpectomy site is now hard. Very hard to know whether it’s normal (I think it is) or should I be concerned.
The best we can do is keep doing our best at looking after ourselves. This keeps us fit for another fight, should that ever (please no) recur. There are no guarantees.
The feelings of vulnerability is real.
Take care and stay well xx
1 Like
Hi @Dhillman
I’m hoping the course and counselling will help. The breast care nurse called me yesterday and I was in tears again. Saw a Physio today and tears again when having to talk diagnosis and treatment. The Breast care nurse had referred me and would have explained my situation but they still ask you to go over it again.
I have chest wall and armpit pain with swelling of both breasts and under armpit/bra side. I have been doing my post surgery exercises since July, maybe not every day but when I think about it. I tried some light weights, yoga and Pilates and the pain got worse. Holding my arms to the side or stretching above my head is painful.
Physio today agreed there was chest wall and armpit pain and to continue most exercises but with movement and not to hold. She also found out I have a nerve issue on both sides. She held my arm at the elbow and tried to bend the forearm backwards with the wrist bend. It wouldn’t move on both sides. So now I have nerve flossing exercises to do to release them. She thinks the nerve issue is from chemotherapy and the swelling is radiotherapy.
Paclitaxel is known to cause nerve issues in the form of peripheral neuropathy and it would have been helpful to be given more information to help or prevent, rather than waiting until it happens and then trying to fix it.
Everybody keeps saying it’s unusual to be both sides but its also unusual to have two primary bc at the same time!
I also have lots of aches and pains especially if I sit still for a long time or get up in the morning. Movement helps. Hot flushes are a nightmare, last night I was woken 4 times, one time I couldn’t disperse the heat and was awake for over an hour. It could be the Herceptin or Letrozole. I have 4 months of Herceptin so hopefully will know what is causing it into October. I was offered some anti depressants that help with hot flushes but there are contraindications with other medication I take. I’m not sure I want to pop yet another pill. I am thinking of getting a new bed with natural fibres to replace the memory foam topped bed we have now. I swear it hold the heat. I have cotton bedding as well. I tried bamboo but it retains the heat.
Love to you all
4 Likes
Hello everyone,
One year ago, many of us were just starting chemotherapy, facing an uncertain journey filled with fear and anxiety. Today, we stand together to tell our stories of resilience and hope. This past year has been a testament to our strength and determination. I want to express my deepest gratitude to each and every one of you in this group. Your kind words, wise advice, and unwavering support have been a beacon of light during some of my darkest times. Sharing this journey with all of you has made it more bearable and given me the courage to keep fighting.Thank you for being there, for listening, and for sharing your experiences. You have all played a crucial role in my recovery, and I am forever grateful. God bless you all. 
3 Likes
Hello All,
Hope you are all doing ok?
I am doing good 
@Guida it’s true what you said -everyone on here has helped each other try to recover.
Remembering anniversaries and how different this time of year as compared to last. I am a year older thankfully - won’t complain about birthdays or aging.
I still attend the macmillan support group once a month and find it so useful to help others and learn from others.
@naughty_boob hope you are doing ok ? Let me know how your ‘moving forward’ course goes.
I might try to attend.
Take care all and stay well xx
2 Likes
Oh….
I am also attending the ‘fear of recurrence’ talk at future dreams house and racing for life on the 13th of July for CRUK.
Xx
4 Likes
Hi all
I’ve just read through the last couple of months of this thread, and am very happy to see that most of you are making good progress with your recovery- hard to believe it’s been over a year since I started on the paclitaxol!
I had my last Herceptin injection in June, and saw my oncologist hopefully for the last time last week- she said it would still take some months for various side effects to go, so I definitely don’t feel that it’s all over but I guess I’m on the right path. I’m still feeling very up and down emotionally- due to start some counselling this week so I hope that will help. It’s hard to know what is the cancer effect, what is getting to 67, and what is my usual inclination towards feeling a bit negative about life. I did the Moving Forward course in January and it was helpful to talk to others in the same situation- and we keep in touch occasionally too which is nice.
I guess we just have to find a new ‘normal’ which we can cope with, but it’s definitely been much harder than I expected. Good luck and love to you all xx
5 Likes
Hello everyone - how lovely to read your latest messages. So pleased you are all sounding as positive as possible.
I had a bit of a blip. Because I’m triple negative, I was given immunotherapy and had 18 doses. Had my last one on 30th May and a few days later ended up in ICU for two weeks and high dependency for a week before being transferred to the Marsden for a further week. Yikes. I’m told my reaction was rare so don’t panic. 0.01%. I got meningitis so they really had to fix me up. My poor family!
I was discharged home and slowly getting back on my feet and (for once) I’m resting.
Good news - they had to check for cancer and no sign!!!
So that’s me and pleased to be re-booting and getting back to normal.
Take care of yourselves - we are blooming amazing bunch of strong women and still here for each other.
Xxxxx
4 Likes
You will find your new normal. Xxx
3 Likes
Its been an amazing group very much including everyone. Onwards we march x
4 Likes
Hi all
Hope you are getting on with life and enjoying some well deserved summer sunshine (while it lasts!).
@rachel60 thats sounds horrific, after all you’ve been through with bc. I. So pleased you are on the mend.
@Guida yes I agree this group has been so supportive and we are still continuing to check in with each other. It’s been a fantastic group and I didn’t even start my chemo until September, so I joined that month’s group and met another group of wonderful people.
@Dhillman good news you’ve book for the fear of recurrence talk, I’m going to look into that and see if they do an online version. I hope your race for life went well last week, good on you.
@Artylady I’m so pleased you’ve finished your Herceptin, I have 3 more to go and it does feel like it’s not over but am grateful there is an end in sight, as some don’t ever get that. I hope your counselling goes well. I had one counsellor I didn’t gel with but have been referred to one locally I spoke to years ago and it’s been great, on,y had 2 session so far but I feel more progress than in the 5 sessions before.
I have just come back from the 2nd Moving Forward course and met a lovely bunch of ladies. All different stories and treatment but we all knew how everyone was feeling. Our session had a facilitator and a volunteer and it flowed really well, with lots of input from the ladies rather than being’talked’ to. Had a breast care nurse visit to answer our questions that we prepared from the previous session. You can imagine we asked about menopausal symptoms, recurrence, how to tell difference from lumpy post surgery boobs to a possible recurrence. For anyone who hasn’t attended this course I would highly recommend it. The ladies running the course commented on how quiet we were last week coming in from the cheery hello’s this morning. We all walked in happy and smiling. We’ve also set up a WhatsApp group and for me there were 4 other ladies within my local town or just outside. It’s the first time I’ve met someone with bc locally. Suffice to say we plan to meet for coffee soon.
I think I’m wishing that September will come and I have my last Herceptin. I really want my treatment to finish.
I had my leavers assembly at my school and received some lovely flowers, gift voucher and cards. I sat in the assembly and thought I’ve missed the children, it’s been over a year since I’ve worked. But they’ve just had a terrible bout of slapped cheek, not to mention measles a few months ago and I realised I don’t want to catch all the bugs I used to anymore. I want to be well and free of side effects of my treatment. I get my redundancy in August and as I’m 55 I get my pension as well, it’s not much as I’ve only worked part time but it helps and it’s not reduced as I’m 12 years below retirement age.
Talking of side effects, I went to see a menopause specialist privately, I’d waited over 4 months on the NHS but needed help with symptoms as I hadn’t slept properly since coming of HRT over a year ago. I got prescribed Fezolinetant (Veoza) to stop hot flushes and it works! It reduced the number of times and when I do get them they are not as bad. Downside is it’s not on the NHS yet, so I’ve paid privately. I’m also having vaginal oestrogen (imvaggis) which is a really low dose and ok on Letrozole. I’ve seem improvements within 10 days. I want to live my life and not feel so tired, sore and achy. The aches and pains are still there but I find moving and exercise helps.
Love to you all lovely people 
1 Like
Hi all, I’ve really enjoyed reading all of your updates and I’m glad to hear of many of the positives since chemo finished for you, to me it feels like such a long time ago - but feel I’m maybe struggling to process it, so I will look into the moving forward course you have recommended. Very sorry to hear of your experience @rachel60 but so glad you are out of hosp and on the mend! I recently had my first mammogram since finishing chemo and radio, all clear. I then had a breast MRI (because of my age) which showed a new lump in the same breast as my lumpectomy, it was a very stressful time and brought all of the feelings rushing back from the initial diagnosis. But I was very relieved when the biopsy showed it was a fibroadenoma and no further treatment was needed. It was a big shock to the system, so I’m currently still feeling quite fragile. I’m on the hormone meds and dealing with them okay, except some hot flushes and joint pain, managing it with exercise and diet. I’d like to know if you have any experience with zoledronic acid infusions, I’ll be starting these next month and abit nervous (just feels like so many treatments, my body is at its limit). How have you found them? And any tips for me? Thanks for your support x
Hi @Jess_1
So nice to hear from you and that your first mammogram was clear, albeit with a little drama which you could do without.
I had the zoelendronic infusion in April, I was advised to take some paracetamol half an hour before as it can cause some ‘more’ aches and pains, so I did. I had flu like symptoms for 2/3 days so just rested and took paracetamol. I was pleased I wasn’t going into the chemo day units for this but a separate ward, but little did I realise that I’d be sitting in a blue chemo chair, all other spaces were beds, and the tears came streaming down. It felt like chemo all over again and I’d gone on my own with my big girl pants on! The nurse came up to me asked as what was wrong, when I told her she only said well it’s not like chemo. It was quite quick about 30 minutes for the infusion with obviously blood pressure etc to check before. They lost gave me D3 calichew tablets to help my bones.
Take care
2 Likes
Thanks Jess and bounced back! I’m “very rare” so don’t worry
Totally understand its such a tough up and down process. I’ve certainly changed in my ways but sometimes resent not being me. Not loving the French poodle that has landed on my head either 
Haven’t had injections but will soon. So we can compare notes.
Take care of yourself and how amazing you are
Xxxx
1 Like