Why I am upset this weekend.

I used to post on here ALL the time, and by that I literally mean ALL the time. Every thread, any topic. But since my active treatment ended last Autumn I have gradually posted less, though I still pop in and read what’s going on quite a lot, but I am not so obsessive now.

However, today I am breaking the status quo and posting as I need to bulb and it’s hard to do it in the real world. I just need to talk and don’t want to upset my family, so please bear with me. I’m going to say the lot and hopefully will feel better by the end of it.

I was diagnosed spring 2010 with a stage 1 (hopefully), grade 3, weakly ER positive, her2 negative ductal cancer and I had a WLE, Chemotherapy, radiotherapy and am on tamoxifen. My diagnosis came totally out of the blue. I had just turned 36 and was married with two boys aged 4 and 2. We were trying for a baby when I was diagnosed but fortunately had not caught pregnant yet.

I was in total shock when I was diagnosed. I couldn’t eat, I lost a stone within a few weeks. Chemotherapy hit me hard, but I was lucky that I had no major illnesses through it. I found FEC really rough, it knocked my hormones for six, which nobody had warned me about, and I felt sick all the time. Even looking at the bruises where the cannula had gone in made me feel like throwing up. I couldnt eat anything red or drink anything red or orange. I went through every food possible to find something i would eat, and searched the supermarket aisles for drinks i could stomach. Even water made me feel sick, especially after i read that chemicals can leak from plastic bottls into the water and cause cancer. Before then i’d been buying the little bottles of water so i could sip it through the day and keep track of my water intake. After that, all i could imagine i couldtaste was chemicals in all water.

I lost more weight as I just couldn’t eat. I was crying a lot and still in a state of disbelief. I hated the cold cap,
decided it hadn’t worked and shaved my hair off. I hated not being able to look after my boys properly. Then I had taxotere. I had an allergic reaction to the first one, the room was full of doctors and nurses within about ten seconds of my nurse pressing the big red he’ll has broken loose button on the wall. One of those oncologists was my best friend. Irony of ironies but my best friend is a breast cancer oncologist. A huge dose of steroids, piriton and a very very slow drip got the taxotere down me, and the subsequent treatments, but I cannot describe the terror I felt returning for tax 2, I had quietly said goodbye to my family and my boys before I went in for the infusion as I was convinced it might kill me off this time. However I begged my consultant to keep me on tax. He said it was his decision and he had to make sure he didn’t kill me with the preventative treatment. My view was that if he thouht I needed it at the outset then I obviously did need it and wanted my best chance at being well. Anyway, the infusions went smoothly but the taxotere side effects hit me in a different way. Every nerve and cell in my body seemed to jangle and vibrate, I didn’t feel sick though and could eat again, though it didn’t taste right!

After chemo I had radiotherapy which was ok. In a weird way I quite liked going as the staff were lovely and looked after me. I also started my tamoxifen. My periods had stuttered and faltered on fec and totally packed in after my first taxotere. I’d been having hot flushes since fec and they were quite bad still whilst having radiotherapy, but not anywhere near as bad as some ladies recount.

After active treatment, I tried to come back into the world. some friends had disappeared off the face of the earth. Othre friends/associates didn’t know what had happened to me at all as I went into a kind of retreat during dx and treatment. I posted all the photos of me through dx, treatment and after on my fb page and announced to the world really that I had had breast cancer and chemo. That was a really massive step forward for me as I stopped feeling embarrassed about “failing” by letting myself get cancer. Christmas was good, I threw myself not it, and new year was accompanied by an urge to accept that 2010 had been about my getting breast cancer but that 2011 would be about raising awareness in young women, raising a bit of cash for bc research and reclaiming my life.

I generally feel ok now. I am naturally a positive-ish person but when I get a low I seem to sink very deep. This year I have done quite a lot of raising awareness, various talks to organisations, media coverage etc. I find these scary but enjoy them. It helps rebuild my self esteem to do these things and gives me a sense of achievement. I feel physically well, though do get tired. My periods never came back though, although I do still feel an underlying hormonal cycle.

That’s the background, which leads me to the reason for this post. It’s that I am feeling rotten this last week or so. I know why, I know it’s normal, I know it will pass buti also know it’s bl**** awful when I feel like this. The first reason is that people I know with bc now seem to be getting secondaries, or even dying. I know this is normal, it’s why we are all terrified of the disease at dx, but you get to a point when your contemporaries in treatment are being lost and it’s bl**** hard. It feels like a sniper is picking us off at random, one by one, or that we’re all shipwrecked at sea and the sharks are randomly biting our legs and pulling us under and suddenly, plop, another ones been got and will it be me next? I get scared to invest too much in bc friends on one hand, whilst desperately needing to talk with people with bc who understand me on the other.

On the other end of the scale is the baby thing. I am devastated I seem to have lost the chance of another baby and it’s not the future and the family I had planned. I feel very lucky (whilst being still scared of course) to have hopefully found my cancer early and have a decent prognosis, and it feels churlish even to myself to feel so upset. I have two boys who are wonderful and I know I should be content, but I feel robbed. It’s come to a head this weekend, as I new it would, as my best friend the oncologist has just had her third baby. We went through our other two pregnancies together and our families are meshed together. It’s like a gaping hole in my heart this weekend. I am pleased for her, I really am, but part of me wishes she hadn’t chosen to have another baby as the isn’t another person on earth whose third baby would have affected me quite as deeply. She is lovely and knows how hard it is for me and trying to be sensitive, I am trying to make this a happy even which is about her and her baby, not about me and my breast cancer. But I am weeping inside all the time. I want to help her, she needs help, she’s had a section and has no family nearby. She has helped me immensely over the last two years and I want to help her. I’m going to meet the baby this afternoon but I’m a bit all over the place. The last week or so has been an emotional nightmare for me.

Baby wise, I have no periods so that kind of puts a damper on my ability to have another baby. I also have two little boys I am grateful for and have to put them first, not myself. I can’t put myself at risk for my own wishes, I need to do my utmost to be there for them. Thirdly, even if I was able to get pregnant, I would not come off tamoxifen earlynwhich would take me to 41 and my husband to 45. He’d be 60 with a 15 year old child, I’d be 56. , or possibly dead. It’s not fair to the child. So in my heart of hearts I know there’s no more babies for me but I am gutted. And I know it’s not as bad as for girls with no children, and for those suffering recurrences, but for me it’s still devastating.

I just want to wipe out the last two years and for it to be me lying with a new baby next to me in the maternity ward. I hate breast cancer and what it has done.

So that is where I am up to now. I know this acute period will pass. I know I will get through it and I have faced worse. But it’s still cr@p having these blips.

Love to all going through similar and worse


These are the weekends i’m dreading as I come to the end of active treatment this month.
No idea what I can help you with, but a smile and a hug can sometimes help. xx

Oh tors I do feel for you. I had depression a long time ago in the past so I know that often nothing anyone says manages to lift you out of the hole. You will know that others are worse off but that only makes you feel more guilty for feeling down so don’t even go there. Where you are is what counts just now because whatever it is that is making you feel as you do is real and is hard to bear at this time.

You won’t stay down for ever just as you never get to stay in the really good times. I really hope that having written it all down has given you some kind of relief.

Hang on in there. The next step is up.

your not alone with these feeling and in fact i also felt a bit rough this morning and reading your post made me realise its all normal in our world. Thank you for sharing because i feel better now. I hope you feel better soon.

Hope writing it all down made you feel better.

You know where I am Dx

Vickie, I think to an extent we all put up a front for those around us. Hopefully, the support here will make you feel it’s ok to be angry, upset and as I think in the main, we are expected to be cheerful & happy because it’s “only” breast cancer we keep a lot of the fears to ourselves & when our friends die or get a stage4 dx we are reminded how cruel this disease really is. I hope you will be able to keep your friendship but if it is too painful, you may have to put yourself first, a real friend will understand! xx

Hi tors

I’d noticed that you hadn’t been posting as often.

Your post made me feel very sad and very angry because of what this awful disease does to us. Only those who have been there know that it affects every aspect of our lives.

Sometimes we need help coming to terms with the changes and getting out heads around them. We become different people because of our experiences.

You obviously appreciate what you have but you sound as though you are grieving for what you have lost and what you can no longer achieve.

Hsve you considered counselling? May be it’s something to think about. If you have a cancer centre near to you they could help or your BCN or your GP.

The other thing is that the treatments and medication affect the production of serotonin which affects our moods and can make us depressed. Your GP can prescribe something for you if this is the case.

Yes you will get through as we all do in one way or another but sometimes we need a little help.

Sending you my love and huge hugs. I hope you soon feel better and the baby visit wasn’t too traumatic.

Jan xxx

Dear tors

So sorry to read that you are having such a hard time, if you want to talk please don’t forgot about the helpline, it may help to speak to someone, the lines are open again in the morning at 9 on 0808 800 6000.

Take care

Hi Tors
I didn’t have chemo just radiotherapy and I was well past babies so tamoxifen didn’t seem to be such a big deal. I went into the deep dark pit just before my five year all clear. No idea what the trigger was but it was a very bad time.
I had a great GP who did very little and work were good at the stage when I needed to take it easy going back.
The key to getting well though for me was the Haven in Leeds. The support they provided didn’t happen in the olden days (five years ago). I often think we fight so hard for basic survival at first that our mental health is sidelined but eventually it can catch us up.
I now regard my time in the black pit as part of the recovery from BC in just the same way as recovery from the surgery.My advice would be the same now for both. Give yourself time, be kind to yourself expect to have not so good days and take the appropriate medication if you need it.
Love and hugs
from Chinook

Hi Tors,

I’m so glad you posted. You’re not being self indulgent or churlish. Please don’t punish yourself because you feel how you feel.

Just wanted to say I’m so sorry that all this is getting you so down. Sounds like you’ve been busy and supportive and family orientated and badly need a little ‘me’ time. You’re only human.

I hope that using the forum again has helped. Sometimes we just have to share.

Take care, sending hugs.

C x

Oh Vickie…hugs Maria xxx

This weekend has to be the worst since being diagnosed with early breast cancer in August 2008 as I am convinced that the cancer has returned and that I have now entered the secondary stage of this disease. Prognosis was good at the time, small tumour less than 1cm grade 2 no lymph or vascular invasion, however it was triple negative. Treatment wle and radiotherapy. Chemo was considered to be overtreatment by my onc. In March this year I had low back pain which did settle after a few weeks, nevertheless onc arranged a ct scan of pelvic area. Results were clear. However, since june this year a new pain occured on the right side of sacro- joint near my bum, it hurts when I am walking and very painful on movement. I have an apppointment tomorrow with onc and I am fairly certain he will arrange tests etc., If the cancer has returned then this will be a blow for sure, but I can’t help feeling angry at my onc as he new it was tnbc but did not treat it systemically. I am fully aware that breast cancer is very unpredictable, but I believe he should have given me the best possible chance to achieve a longer disease free period. I cannot stop crying and absolutely dread the outcome of any tests that are carried out. I have discussed this over the weekend with my husband and I have decided that I do not want any treatment that will keep me alive, I only want pain relief. I do not want cancer to end my life, I just wish there was another way out.

Vickie so sorry that you are feeling so low this weekend. What you are feeling is quite understandable. We all mourn for what this horrible dx has stolen from us.
Sending you hugs.
Pam x

Hi Vickie,

Am so sorry to hear you are feeling down at the moment. I think during treatment although we know the implications about fertility, during that time it feels like it’s mostly about getting your head down and getting through active treatment. For me it’s afterwards that the enormity of everything has really hit, which it sounds like you are going through too. However that’s also when non-bc friends think that “it’s all over” so it feels very lonely. So I’m glad you posted and hope writing it may have helped a bit - you’re definitely not alone.

I can relate to how you feel about friends having babies - I am really happy for them, but at the same time have a completely gut-renching sadness too. It is absolutely gutting to know you will not have children, or any more children when that is what you have hoped for. You said it’s not as bad as for those who haven’t had children, but I don’t think that’s the case. As you know I don’t have children which I am devastated about, so I’m saying this from that position. As you said, you are very grateful for your 2 lovely boys but I believe that it does not make it any less sad or unfair that you can’t have the third child you had hoped and planned for. Breast cancer has robbed you in the same way. Unfortunately I have no answers but just wanted to let you know that I am thinking of you.

I also understand the bit about knowing we are lucky, in that hopefully we found it early. However breast cancer is breast cancer, and the reality and aftermath is just completely rubbish. I remember actually saying that to my oncologist - I was feeling bad for being upset/scared and said I knew that I was “lucky” (as ironically I had met him before when he had looked after my friend who had died of breast cancer 16 months before, aged 33) in that things could be worse, however his answer was that if was lucky then I wouldn’t be sitting there at all. So I guess what he was saying and I’m trying to say is that while it’s good to be grateful for a relatively good prognosis, it’s also ok to be sad/angry/gutted to have been diagnosed at all and all the implications. I’m absolutely not in any way comparing with those who have unfortunately been diagnosed with recurrences and secondaries and everything they are dealing with (I wish no-one had to deal with breast cancer at all), but saying as my oncologist said, that it’s ok to be upset to have been diagnosed at all if that makes sense.

Your analagy of the sniper really struck a chord with me, that’s exactly how it feels knowing ladies - both here on bcc, and a family member and friend, who have sadly died from this disease, some of whom had relatively good prognosis. On bad days that scares the hell out of me, but I just have to keep reminding myself that many many are ok.

You sound like me in that you said you are generally a positive person, but the bad times are bl**** horrible. As you said and know, this time will pass but in the meantime hang in there and be very kind to yourself. Talk to those who understand, and don’t bottle things up. I hope that you managed your visit to your friend and her baby as well as possible today.

Thinking of you and sending hugs,

Siobhan xx

Hi Yellow

I’m sorry to read that you are having a pretty rought time at the moment. It might help to talk things through with a trained member of staff on the BCC helpline. Here you can share your thoughts and feelings with someone who can offer you emotional support and pratical information. The lines are open Monday to Friday 9 to 5 and Saturday 9 to 2pm and the number is 0808 800 6000.

Best wishes Sam, BCC Facilitator

Hi everybody

Thank you all SO much for replying to me. First though, I want to send a huge hug out to Yellow who is also having an awful time this weekend. Yellow, I hope you and your husband can get through this horrible waiting time together. It’s so hard isn’t it? big hugs to you, and all the very very best xxxxxx

I feel so much better tonight. Thank you everybody for taking the time to reply. I felt so wretched this morning, mostly to do with the baby thing. I have tried counselling but didn’t get on with it, and I’ve seen a great psychiatrist too a number of times. Usually I am pretty sorted with working my feelings out but this was a biggie for me and I’ve been buildingup the dread of waiting for this baby to be born for 9 months. However, I am delighted to report that I psyched up my courage and visited today, and he is an absolute joy. I felt comfortable, I enjoyed cuddling him, I loved being the one who could actually help my friend for once rather than vice versa, and I could enjoy that this event was about my friend and her little baby, not about me and my breast cancer. I am so very relieved that the fear seems , as usual, to be worse than the reality.

This episode has made me think a bit though and I think I have a lot of grief about my lost chance at another baby which I still need to deal with. I thought it would come out when my youngest started school this September as I had always expected to still have his little brother or sister at home with me when he went to school. But I sailed through that with only the usual level of upset when your little one starts school. I think it might well be a good idea to chat my feelings out. It’s helped writing them down today and getting feedback from people who really properly do understand. Siobhan, you’re right about friends thinking you’re better. It upset me today that my other friends (outside of bc) didn’t even think to send me a hug or kind word on what has been a weekend I have been dreading for months, and which I have told them about. It’s hard to talk to my husband and mum as they really don’t need to see me so upset, and they really really do not need to hear about the other young women my age with breast cancer who are dying all around me.

So I think I will give the Haven a ring to tomorrow and see what they can do for me, I’m not too far from Leeds and I also think a change of Location and venue may help to sort of Accept this as a different healing stage than my active treatment. I can’t recall who wrote that, but it really hit home as a good idea. I don’t feel depressed, I just react to events and fall into a pit, but I think that is understandable and healthy, rather than bottling it up. I have always felt feelings deeply and been very happy to share them in their rawest state on here, as long standing community members will no doubt confirm! However, I can and do bring myself out of the holes and get back to enjoying my life and my little boys.

Thank you so very much for all your support, I have truly made some fabulous friends here.


Vickie just want to send you a big hug… I too wanted another baby when I was diagnosed… But finding out I had brca gene and a relative dying from ov ca made me make the decision to have an oophorectomy… When I went to go back to working as a midwife I was so upset walking on the ward that I have decided now not to do that any more.

I try and put it out my head otherwise I do still mourn for the loss of having more of a family… But like you when friends and family have babies it can be really hard so I do try to avoid them.

Glad you are feeling a but better this evening x

Yellow also want to send you a big hug too and sending positive vibes to you.

Yellow, I have just seen your post - I think we were posting at the same time so have just seen it now. Am so sorry to hear of what you are going through at the moment. Just wanted to send you a huge hug, and say I am thinking of you, and am hoping that things don’t turn out to be as you are fearing. The waiting is awful, so I really feel for you. xx

Vickie, am so glad you are feeling better this evening and that your visit went well with your friend. The Haven sounds like a good plan - have heard loads of good things about them. That’s how I feel about family too - I’m reluctant to talk to mine too as I don’t want them to see me upset, or worry anymore than they already do. So the Haven sounds like a good idea, and chat to your friends on here! Non-bc friends do mean well, but I think it’s difficult for them to really understand what it’s really like at times.
Take care, and sending hugs. xx

Spoke to you on the other three word thread.
Hope you can find it.

I’m glad the fear was worse than the reality and that you’ve gained greater insight into the depth and width of how this issue affects you. It may help you in the future but with such emotional pain it is difficult to remember any learnt steps from previous encounters.
I speak as someone who has tried repeatedly to conquer bouts of depression and learn from them and am so disappointed in myself that the knowledge I had previously gained has drifted somewhere into the ether…
We do learn from emotional pain and take tiny steps forward every time but we also constantly beat ourselves up for not being logical and remember adequately.
The next time will be painful and it can hit you sideways from a completely different angle but don’t expect to be in control again.
I’m not putting this very well but each and every time we disintegrate we learn a little but it still feels sooooooooooo very very awful and so isolating…

To Yellow, your pain and fear is so very evident to read and of course I cannot do anything to help you except that I can try and understand and accept your feelings are so real.
I and so many others want this weekend of pain to ease for you and hope the subsequent tests prove to be less hostile than you currently believe.
Tight hugs to you and to Vickie for such an awful time of seering emotional pain and to everyone who is losing hope…
I wish I could help more.
I identified with your suffering very greatly.

Welsh girl xxx

Thank you so much ladies for your support, it means a great deal to me. When I read my post back after sending it I felt as though I was just thinking of me…me…me when there are so many of us on this thread who have gone through so much just living with bc… Feel a bit better today. Seen my onc this aftenoon, he stressed that the pain I described in my lower back was definately not cancer related, but I must say I am losing confidence in him. To cut a long story short, he sent me for a ct scan in April on my upper body despite me teling him the pain is in my lower back. Still have the pain but only when I am up and about and especially after walking. The pain appears to be in my sacro-joint, which I understand is where bc does go to. Anyway, I have decided to wait until after xmas (if I am still hear) and I am going to make the most of it, I will then ask my gp for a referral to another oncologist, I will go private if necessary. My very best wishes and hugs to you all. xx