moving forward course was a revelation to me, just had afternoon 2 of 2 today. i did drive about 20 miles to it but some people got the train and had taxi cabs due to the train strike today
Thank you everyone for sharing so openly here. I too feel some of your pain. I finished 7 rounds of chemo last Nov. Then had surgery and 10 doses of radiotherapy. I’m still on 3-weekly Phesgo + letrozole tablets Anne Ibandronic acid. It all adds up to still being very fatigued. But the time I finish Phesgo in Sept, it will have been a full 16 mnths in treatment. My hair is growing back quite nicely: short but thick. I am feeling everyone is judging how recovered I am by the extent of my hair regrowth, but there’s so much more to it. I didn’t really take any time off work, just switched from an office desk to working from home, so I’ve not got that hurdle to face for which I am grateful.
Tomorrow I will be attending week 4 of the 6-week Maggie’s moving on course. It’s on emotional wellbeing. I’m really hoping I pick up some tips.!
You totally nailed how I’ve been feeling
When friends say " You must be soooo happy,I bet you’ve been celebrating for weeks" I have to clench my jaw and grin in case I reply oh F*** Off!.
Like some of the previous brilliant comments on this thread,I feel awful if I don’t constantly appreciate how lucky I am getting clear margins following Mastectomy and “just” being on tablets.
Of course I’m bloody so relieved I don’t have to go through further gruelling treatments that others continue to face.
But I know I’m actually still in shock and processing what I’ve been through, I’m not ready to celebrate and seize the day yet. Maybe that will come with time?
I’m scared that the pain won’t go, the cancer may silently come back, and I will never be the same lighthearted friend that everyone looked to bring the “fun” to an occasion!
I can understand why your husband may say you need new friends. It’s a massive adjustment, and we can never go back to being the carefree optimistic person we were, so our friends will have to change with us
I feel the same. I’m 5 weeks post mastectomy and the only time I have been out of the house is to hospital appointments, have only seen 3 close friends and haven’t managed to look in the mirror yet. I can’t bear the thought of people seeing my deformed body.
I just want to be me but know that that me has gone forever and I need to find a new identity. I have had good and bad days during my 10 month journey but have always bounced back but at the moment it’s constant and nothing eases the feelings.
Thank you for sharing your experiences. I feel so vain worrying about my appearance when I have been through a long and bumpy cancer journey and it helps to know others experience the same.
People say that I am the same inside, but anyone who has experienced any cancer is never the same again.
Hopefully, in time, we’ll all be able to look back and wonder what we were worried about and be comfortable in our new skins. Sending a virtual hug to you all.
This so echos my experience. I had a double mastectomy in March and was very lucky in that the sentinel lymph nodes were clear so no radio or chemo needed. Everybody expected me to celebrate- but having lost both my breasts I wasn’t really in the mood for celebrating- although I know I am very lucky. My margin was only 0.5mm as area of DCIS was so large that it went right up to the skin and they couldn’t go any further. That worries me a bit.
The relationship bit is what really strikes a chord with me though. While my husband has also been brilliant at attending all appointments and ferrying me about, he has just been unable to provide emotional support. I don’t even tell him how I feel about it all now as he’d never understand… that’s a very isolating feeling and I’ve been feeling quite depressed which I think is a combination of the trauma of it all and the isolation of no one really ‘getting it’. I have organised going back to work on a phased return to try and kick start my life back, who knows if that is the right decision…
Hang on in there brave ladies! xx
Hello @ziffi
It really is so very difficult for those that have not experienced a diagnosis and treatment to truly understand how you feel.
Please remember that Breast Cancer Now Maggie’s and all other cancer support services are there for you at anytime not just whilst you are undergoing active treatment. I completely underestimated the psychological and emotional impact it had on me and having been someone who found asking for help difficult I realise now quite how much we all need help from time to time: but not all help is equal!
Please feel free to check out a Moving Forward course offered by BCN if you think it would help
Sending you lots of love going forward
AM xxx
I’m having radio this week . Have booked a moving forward in July .
MacMillan offer counselling too .
You are not alone. This forum has provided incredible support for me and I get so much from supporting others. We all know what it is like.
I would love some more local support meeting others for a coffee and a chat but unfortunately there isn’t anything local. Maggies is 30 miles and Penny Brohn is 18 miles away. I go to Maggies occasionally if I have another reason to go to the cancer centre. I have booked a Moving Forward course and hoping that helps as well. It’s 20 miles away but I can hopefully make some contacts with others in the same situation. Penny Brohn do a lot over zoom with is good and I have been to their centre for a well-being day.
My husband has been wonderful but I also withhold some feelings from him. He’s been through a lot watching me have surgery, chemo, radio, injections and tablets. I’m not sure he has really coped with my diagnosis. He doesn’t feel that he needs help.
The forum is here for you when you need it. You can also contact the BCN nurses or sign up for Someone Like Me
- Helpline: 0808 800 6000 (Mon-Fri 9am-4pm; Sat 9am-1pm). Speak to our trained helpline team. No questions are too big or too small.
- Ask Our Nurses: You can message our nurses here on the forum, or confidentially. Whatever you prefer.
- Someone Like Me: Will match you with a trained volunteer who’s had a similar experience to you. They’ll be a phone call or email away to answer your questions, offer support, or simply listen. Call on 0800 138 6551 or contact our email volunteers
Thinking of you
Good luck with the radio. Keep moisturising.
I want to restart with new friends and a new job. Even my husband said I need new friends. I’m over treatment soon. No more phone calls or texts. I’m 60 and my life has gotten so small. I want to start fresh. For my husband to make that observation is amazing. He sees how much I’ve changed. He said what the heck, you have had these friends for years! Start anew! Let’s do something different since we will be mobile for at least 20 years. (God Willing).
Maggie’s referred me to one of their psychologists which was really helpful. Helped me to understand my feelings and am having follow-up to help me move forward and come to accept the new me. Please seek support if you need it.
The fatigue was overwhelming for me at times, and really disheartening.
However my energy levels are improving now. Im about 10 weeks post radiotheraphy.
Someoneon here advised me to try taking my meds last thing at night rather than first thing in the morning.
Hello everyone
Everything you have shared here resonates with my experience. I am back at work after surgery (last Autumn) and 2-weeks-RT treatments, now on Tamoxifen for a few years.
Some friends and family say “it is all done, gone now”, but I keep telling them that “the journey is just starting”…I am quite anxious and scared what yet to come. Not sure if I should still work on my career or not, and not sure if it is at all worthed. I just know that I can’t go back to the same pace and way of working and living as before BC. I have booked on the Moving Forward course online. It is good to note your suggestions here…best wishes…x
When you have been focussing on one appointment to the next / one treatment to the next and trying to take a day at a time it becomes difficult to adjust your frame of mind and allow yourself to think that you have a future let alone imagine what that might be . It takes time - the Moving Forwards course will help - it certainly helped me . Before the course I was a mess - bursting into tears , angry ( hormone therapy wasn’t helping ). I had the chance to go away for a long weekend with friends abroad and it sent me into a panic I thought " oh no I can’t possibly do that " . I was still off sick from work and all I could say to my GP was that I was just not ready . After doing the course I was ready and also kicking myself for turning down the chance of a holiday.
I’m sure you will get there but if the course isn’t enough you could consider counselling . Sometimes having cancer makes you re evaluate your life and where it’s going - I think I’m older than you I’m winding down in my career and I knew I wanted to go back to the same job but it may well be different for you . Xx
Me too-heard it is great
I feel like I too was judged by my hair or lack of how much fell out. I was lucky to be blessed with very thick hair; I lost hair from the sides and my crown, but when I put my hair a certain way, you couldn’t tell. My last chemo ended up getting delayed by another 3 weeks as I was unwell. In that timeframe, I noticed the hair I’d lost was beginning to grow back. To me, I can see where I have short hairs and they’re growing back, but to others, I look ‘well’. My eyebrows thinned a lot, I would fill them in when I went out so again got a lot of “you look well”, which I guess was nice, but it almost made me feel like my suffering wasn’t acknowledged. I know I’m being silly for thinking like that. People say I look ‘well’ on the outside but don’t see how I’m still suffering from the fatigue, brain fog, the effects and trauma of chemo etc. Now I have had a mastectomy and I am finding it hard to come to terms with
I had a lumpectomy last month and have just had a mastectomy on Monday, which I was not expecting AT ALL. I know this is silly and I sound very weak, but I am very upset and broken following the mastectomy. I ended up staying the night in hospital, because I couldn’t stop throwing up. Since I’ve been home, I haven’t left the bedroom. My husband keeps encouraging me to come downstairs, but I can’t bring myself to. I keep crying, I feel very upset about having lost my breast, even though I know it’s for the best.
Also o have sought out counselling; I’m just waiting for my first session
be kind to yourself allow yourself time to process everything that’s happened everything seems to happen so quickly after diagnosis, your having to make decisions on things and then facing and having treatments and getting through as best you can while probably trying to protect everyone around you from what’s really going on for you personally going through everything there are no right or wrongs you do what’s right for you in your own time do speak to a nurse on here and also you the someone like me option I think we’ve all grieved for who we were pre breast cancer it’s part of the whole journey that none of us ever expected to find ourselves on but give yourself time, you are still beautiful amazing you, even if you don’t recognise yourself when you look in the mirror right now, you are and she’s waiting to remind you how amazing you are when you are ready for her do consider the bcn moving forward course too this has helped many over the years too be kind to yourself sending Shi xx
I had mastectomy last September, followed by 6 cycles of 3 weekly chemo, then 15 days rads. I just started zolendronic acid this week. Although I am comfortable (certainly not happy) to be at home, or friends’ homes without a foob, I don’t know how comfortable I will be when it’s tshirt weather and I’m not hiding under jumpers and cardigans when out in public.
Having said that I’ve only worn my wig twice in public. I’ve used woolly hats over the winter and switched to a lighter chemo cap with a coloured scarf. I’ve lost my eyebrows and lashes, and finger nails and I’ve accepted that. My head hair is growing nicely. It just needs to thicken up.
I came to the conclusion that we seem to be always under pressure to look perfect at all times. If we look perfect then it is assumed everything is fine. I decided not to hide these things. Even my own Dad couldn’t bear to see my bald head so I always wore a hat seeing him every day. I wonder how many of us hide these things to protect other people.
I see these things as signs of what I have overcome, or at least well on the way. It’s almost a year since I found that 1st lump and this nightmare started. But I can see a chink of light. I packed away all the packets of chemo info, wig, etc. Just a small gesture of moving on. Im looking into the moving forward course next x