Breast Cancer Care Forum

Hi Fiona,  just read your post and understand what you mean about feeling guilty.  My surgery didn’t work out how I thought it would as they couldn’t complete the diep. I’m waiting to find out what they may offer next for reconstruction and believed I could only have an implant because that is all that’s been mentioned. I felt I was being selfish to ask about any other options as I should be grateful I’m being offered anything at all, all on the NHS.  I had a chat with the reconstruction nurse last week who told me I’ve every right to consider other options, I have to live with how I look and feel which has had a huge impact on me. I think the longer you have to wait makes the impact worse. So don’t feel guilty, if you’re being offered help do it as it’s about what helps you find your new normal.  Sending you my best wishes xx  ... View more

Hi just wondered how you’re all doing?    Had an appointment to see the plastic surgeon today and discussed the pain I’m in post mastectomy. It’s definitely getting worse and couldn’t understand why. Apparently I should be doing desensitising massage??  which will relieve it. I don’t know why I wasn’t told that at the time and I wouldn’t be in so much pain or have to delay my reconstruction.    I seem to have gone backwards over the last week. I’m so up and down all the time. I’m getting frustrated with myself, I just don’t get why I can’t pick myself up. I wish I could have a break from it all!!  ... View more

Hi Julie,  it does sound as though we’ve had very similar experiences and struggle with the same things, really appreciate you replying   KJ xx ... View more

Hi Julie, that’s the hard bit, putting yourself first as we’re not used to doing that.  I feel selfish doing that and that’s when I get upset with myself for struggling so much now.  Ive always just carried on and got through stuff but this time I don’t seem to be able to.  Knowing that others feel the same makes it less isolating which is a good thing.  Until now I’ve just felt there was something wrong with me and couldn’t understand why I can’t cope.  I did 2 courses about 2 months after treatment as well as the CBT counselling and it was probably too much. My doctor thought I was trying too hard to get back to normal which was having the opposite effect.  I really hope the counselling helps and keep in touch xx  ... View more

Hi Julie,  lovely to hear from you and sorry you’re still struggling with things. Is your treatment ongoing or have you finished?  Sometimes your not ready for things or you don’t bond with the right counsellor so you have to try someone new.  Im on a waiting list for mindfulness which I hope will help. I struggle to focus at times.  I think that’s quite an accurate description about ruling your life, sometimes it’s all I think about.  I like to hear how the counselling goes, hope it works for you xx  ... View more

Hi Philippa,  i can relate to being awake at odd times, I usually struggle to get to sleep in the first place.  I don’t mean it negatively but it’s reassuring that I’m not the only one that still gets upset a lot and having everything on my mind all the time. There has been times that I’ve thought I was going mad, that I was the only one that can’t stop thinking about it. The last few days I’ve cried no end and today feel brighter, I think this is just how things will be for now.  Ive said on numerous occasions to my husband I wish I could just have a day off from this as, like you, I have some discomfort which is worse by the end of the day. That was what set me off last night as I can’t lie in bed comfortably sometimes and I just wish I could.  Theres definitely a gap in the after care as not enough counselling available. Fortunately I had a call from the cancer centre near me to say they have a space starting next week, I really hope it helps. 60 miles is a long round trip if there is anything nearer but I understand what you mean about getting back to normal.  My work have been pretty unsupportive although patient about me being off. Purely by chance I discovered there’s an employee help line I knew nothing about that offer 24 hour support so I’m waiting on a call from them to discuss leaving work. I’m really angry my boss didn’t give me that information tho, I could’ve done with that in March.  Thank you for replying to me, I find it really helpful. I hope you’re not too tired today and look forward to talking again soon KJ xx ... View more

Hi, just seen the reply. I hope the new hormone therapy isn’t too bad so far.  The pain across the mastectomy and under arm is definitely getting worse. I’ve no idea what it is as I can’t remember lifting anything or doing something more strenuous. I did the exercises religiously at the beginning and then lapses but have resumed them in the hope that helps.  My appointment with the plastic surgeon is next week so hopefully he will check it over. I’m hoping to find out what he can offer for reconstruction and an idea of how long I’ll have to wait.  How is your pain? I hope it isn’t too bad  KJ xx  ... View more

Hi Treeze youre right after treatment, they only concentrate on the medical side, I think they just assume you’re ok and off you go. I’ve found that information isn’t very forthcoming either, it’s been talking to other people that has been most helpful. The other thing I did was the Hope course with Macmillan but I know they don’t run very many of them. If you’re still finding things hard try your GP, it’s worth asking. The other thing is the breast Cancer Care someone like me service. I’ve found talking to people in the same situation just as helpful.  I really hope you find some help and that you’re ok xx  ... View more

Hi Treeze  The CBT counselling I had through my husband’s health insurance and while it’s been helpful with some things I haven’t talked about what has happened.  My BCN referred me for counselling through the hospital and was told it would be 8-12 weeks. I was offered group therapy which wasn’t very well planned. It got the appointment the day before, it was 10 weeks.  I was doing the moving forward course for 4 weeks of it which I explained, I was going on holiday at the end of it so would’ve only actually had 3 weeks. Also having attended other group things I found it difficult to talk about how I was feeling as I felt embarrassed by it. Finally we have the Helen Rollason cancer centre near by and they offer counselling so I’m on the waiting list. Do you have a Maggies centre near you? I’ve heard they do something similar. Alternatively speak to your GP, they have talking therapies so could try that.  Gosh you really went through a lot, I hope you find some help xx ... View more

Hi Philippa thank you for your reply,  i can relate to the comments on how well you look and being told I'm cancer free now, as if to say why are you still so down??  I spoke to a friend I spoke to a couple of days ago told me to just focus on that and I'll feel better, she was meaning to upset me, I don't suppose she knew what else to say.    I really don't understand why I feel like I do because they're right and I knew I would be ok from the beginning. I got away very lightly as I had a mastectomy in April  (unfortunately the reconstruction failed so I have the diet tummy tuck and reduction on my good boob). I didn't need to have chemo or radio and am now taking a anastrazole which is causing some mild problems.    I held so much in before my surgery and as soon as I had the op the tears started.  The longer it's gone on the harder it has been as really I should be past this now. I feel embarrassed that I haven't coped considering what I've actually had done when others have had to go through so much.    I have been off work since march and have a certificate to the end of August. I don't really want to go back, been there 30 years but am disillusioned with the job and am discussing with my husband  the possibility of leaving which I'd love to do. I think I've made the decision and then think I just need to pull myself together and get back to work.  Ive had some CBT counselling which has been helpful but you don't discuss what's happened only moving forward. I'm waiting on some counselling with a local cancer charity but will be a bit of a wait. I did the moving forward course which I found really helpful but after it ended I was back to square one and no one kept in touch.  I hope you are recovering well and things start to improve for you especially when the counselling starts. Id love to know how you get on  KJ. xx    ... View more

Hi Dee   Thank you for your incredibly honest post today. So many things you’ve said resonate with me. I’m only 4 months post treatment and have questioned why I haven’t just picked  myself up and got back on with life, I even felt like that 2 weeks after my mastectomy, which I’m beginning to understand now is madness. How can anyone go back to who they were?  I’ve had some CBT counselling and talked at length about feeling guilty for being so down, as I was told I’m still in recovery and that’s what I’ve got to remind myself for now.  Friends and family are the hard part tho as the longer time goes on the more difficult it is to talk to people but some how I’ve got to learn to cope with that.  I’m glad you got the help you needed and life has turned around for you. I wish you continued good health and happiness for the future xx  Kelly-Jane  ... View more

Hi  are you taking hormone therapy? Is it down to that? Lots of people suffer with joint pain taking that.   I had a mastectomy in April and still have a lot of pain across my chest and under my arm but hoped it would ease up in time. I’ve got an appointment with the plastic surgeon in a couple of weeks to discuss what reconstruction I could have and will mention it then xx  ... View more

Hi Evie,  thank you for you’re really helpful and supportive reply. It’s so nice to know other people understand especially when I’ve struggled to myself!  I hope you’re well and it’s lovely to chat xx ... View more

Hi Evie,  thank you for taking the time to reply and yes it has been really helpful. The last few months have been really difficult, I really thought I would have my op and if nothing else needed I would be back to normal. I didn't realise the impact a cancer diagnosis has on you.  I did the moving forward course which I found very helpful. Meeting other ladies who have been through the same as me was reassuring but since that has finished I feel as though I'm back on my own. I'm still struggling with anxiety and as I said I'm thinking about it a lot and still find some of it upsetting.  i don't know how you found other people after treatment finished, but I have 3 very close supportive friends and apart from them I feel people don't understand why I'm still struggling with things. I'll get there in the end I'm sure and thank you once again Evie xx    ... View more

Hi just wanted to say, you’ve had a mastectomy which is a big op so yes you have had treatment. You might not have had chemo or radiotherapy but surgery is a huge thing so please don’t underestimate that when planning your return.  Hope you get a return that works for you xx  ... View more

I really didn’t understand the enormity of what I’d been through. I really thought I’d have my operation and just go back to normal life (I didn’t need chemo or radiotherapy). I spent nearly 2 months not understanding why I was stressed and so upset all the time, I still don’t completely. Why can others sail through treatment but I’ve struggled with everything?  ... View more

Hi Ali46   just visited this site after some time and read your post. maybe the time lapse between treatment and your 2nd mammogram has caused you to feel stressed. A year on everything was still very fresh in your mind but 2 years there's more distance and you've probably got some kind of normality back.  I'll be thinking of you tomorrow, try not to worry too much (easier said than done I know!)  💞💞 ... View more