I know I should be grateful but I am scared

I have posted this on behalf of new user Dawne

Kind regards
Lucy

I was diagnosed with breast cancer in March 2007, aged 45, I have had a lumpectomy, lymph node clearance, chemotherapy and radiotherapy and I have just had clear results on my first mammogram, so I know I have a lot to be grateful about, however, I do not feel like the same person and I have a feeling of constant dread about it coming back. I had the chemotherapy because although my lymph nodes were clear there was a possibility of vascular invasion as my tumour had formed its own blood supply. most of the time I feel anxiety and I cannot face a lot of people, friends keep telling me I need to get back to “normal”, and I would be better if I went back to work, and that I should be more positive, but at the moment I do not feel positive and I do not know what they mean by “normal”. I do not think they have the faintest idea how I feel and I am hoping that someone out there knows what I am talking about. I do not feel ready to face work, or that I will ever by “normal” again. Sorry to moan on but I am looking for some understanding rather than the usual pull your self together sort of speeches that I seem to be getting at the moment.

dawne

Hi Dawne

I am fairly new to breast cancer so have just started radiotherapy, but I went through a similar thing with my son who had cancer when he was a baby. By far the worst time, was immediately after treatment had finished. It was like a huge anti climax and all I could think about was what happens if it comes back? For the first year, I was dreadful. Any slight alteration in his health, attitude, anything, I would be down to the hospital. He had 3 monthly scans which I dreaded, but was fine for a few days afterwards, knowing that all was clear for the time being. All in all it was a horrible time. I think what you must do is hang on to the positive aspects. You have had a clear mammogram, your lymph nodes were clear. What does your oncologist say? I have found that they are very truthful and if they feel you have a good chance, you should believe them.

As for getting back to normal, is life ever going to be quite the same? You have been to hell and back and now are expected to pick up where you left off. This is not possible, at least not straight away. I couldnt face work after Jonathan finished treatment, infact, I withdrew from most social things because I found people got on my nerves. I was close to cracking and my doctor referred me to a counsellor, who I think saved my sanity. I was apprehensive about seeing her because I thought she would drone on about my past etc. But all she did was help me make sense of what had happened and how to slowly piece my life together. She suggested that I return to work one day a week. I was lucky that I was able to do that and that really helped. One day only meant I could face it knowing that I would be off the rest of the week. It did help to distract me from my constant worrying and gave me a reason to get dressed up etc once a week. I think you must give yourself time to heal mentally and perhaps seeing a counsellor to help you get life into perspective may help? The helplines on this website and also cancer backup are very helpful also.

These forums are a brilliant way of talking to someone without the usual face to face and at least we all are in the same boat.

Talk to you soon

Cathy
xx

Hi Dawne and welcome to the forums.

I am sorry to read that you are feeling so low, you may find Breast Cancer Care’s peer support service of help, our Peer Support telephone service aims to quickly put you in touch with one of our trained peer supporters, who has had a personal experience of breast cancer. Our peer supporters are from diverse backgrounds and ages and have experienced different types of breast cancer and treatments. They are ready to listen, offer skilled emotional support and share their experiences and understanding.

For more information about this and our other support services available to you, please telephone our helpline on 0808 800 6000 (Mon-Fri 9am-5pm and Sat 9am-2pm) or email:

info@breastcancercare.org.uk

Best wishes
Lucy

Hi Dawne

So sorry that you are feeling this way at the moment. That said, I can completely sympathise. You are further on than me. I was diagnosed in Nov last year, aged 46, with a grade 3 tumour, have had mastectomy and full node clearance (5/11 nodes affected), her2+. Have had 4 x fec, 20 rads sessions and currently going through first of 4 x Tax, to be followed by a year of Herceptin. My prognosis was not a wonderful one but I have to believe that all this treatment is doing something - otherwise what’s the point. However, I too live in constant fear of it recurring - I haven’t worked since my initial diagnosis in Nov 07 - and don’t really want to. Decided early on that this was ‘my’ time. However, I am constantly bombarded with good advice like how I ‘need something to occupy my mind’, about how ’ never mind in a few months all this treatment will be finished and you’ll be cured’, and how I’m such a brave person for going through this with such a cheery disposition.

I think your penultimate sentence says it all - they don’t have the faintest idea of how you feel. This isn’t their fault I guess - I’d be the first to admit I was no expert on BC before I was diagnosed, and I have been just as guilty of saying crass, idiotic things to friends in the past. That’s why I like coming on here - it’s the one place where the people DO understand what you mean, and you can say it like it is.If I say to any of my friends and family ’ but I’ll never really be cured (which is how I feel) - they seem to think I’m some manic depressive who needs counselling to get me over the ‘bad times’ - and treat me accordingly.

I hope eventually that I can end up in a place where BC doesn’t dominate my every waking thought, and that I can regain some semblance of my former life - but I also acknowledge that it is never going to be the carefree easy life I had before dx.

I’m sure there will be many others along with words of wisdom to help you to make sense of it all - and I hope you manage to get yourself to a place you are at least comfortable with.

Please take care

Margaret x

Dear Dawne

I was diagnosed with breast cancer last November and sound pretty similar to you - like you clear nodes, but some lympho vascular invasion. Had surgery and actually had my last chemo today, so just radiotherapy and then hormones (I’m 48). I have yet to reach the “after treatment” stage so can really only try to imagine what it is like. There is a psychologist who has written a wonderful paper on the emotions and changes that people often experience after breast cancer and although I don’t have the link I know that someone else (Jane RA?) will post it up for you. I can only imagine Dawne that life is never going to be “normal” again. What I mean is that it would be impossible for any one of us to go through this life changing experience - a threat to our lives, an assault on our body imagine, and challenging and exhausting treatment, and to come out on the other side feeling the same way as when we started. Quite apart from that everything happens so very quickly that I am sure that it is only afterwards that it really “sinks in” what we have been through and you really do need to have a period of many months to allow yourself to gather your strength, and restructure your life and just generally recover.

So rather than trying to put life back as it was before or think that that is what you should be striving for perhaps this is time for you, either alone, or with the help of a counsellor, to really look forwards and decide how you really want to spend the coming years. That might include the work you did before, or it might be entirely different. Going to work again after all this is inevitably going to be very challenging, and you might need to ease yourself in very gently when the time comes. Is there an occupational therapist you could talk to?

As to the constant dread of cancer coming back, I guess that is something, to one degree or another, that all of us has to learn to live with, and there are no easy answers here. I can only tell you how I think I am going to approach it. I know that the MOST likely scenario for me, and I guess for you, is that we will NOT have to face cancer again. Statistically that is probably what will happen. I plan to live my life feeling well and healthy and with this experience behind me. If ever I do have a recurrence or secondaries then I will deal with it, however I am NOT going to waste healthy time thinking about being unhealthy. Now I know that all this theory may go out the window, but that’s the plan! It is certainly not a matter of “pull yourself together”, but your life is too precious by far for you to be spending your days feeling miserable. If feelings of anxiety and constant dread are part of your everyday experience perhaps it would help you to ask your GP for some counselling - a niggling voice may be part of life, but a nightmare drumming in your head needs to be put in it’s place! The very best of luck and I am sure you will get lots of other ansers from people who are where you are now. Love and a hug. Sarah x

This is the link Seabird mentioned:

cancercounselling.org.uk/northsouth/extra4.nsf/WebResClient/1761049276601BD68025735B00604834/FILE/article3.pdf?openElement

You cannot get back to the ‘normal’ you had before, but you will reach a ‘new normal’. I am very similar to you - dx Feb 07 aged 44. I was with a friend yesterday who was dx at 45 nearly eight years ago. She was saying how she can now go several days without even thinking of it.

Do you have anyone you can talk to who has been through this already? I know several, and it makes a huge difference. I went out for a meal recently with three other ladies at various stages in their BC journeys. It was really lovely to spend the evening with friends who know what it is all like.

Hi

The article is very good and helped me a lot, I dont really know anyone in my area who has had BC to have meals etc with (if there is anyone in North Kent??) but I can chat to a couple of close friends.

Normal is a strange word and I think we need to change our thinking, I had BC 14 years ago and the a recurrance last year, have just finished chemo but as triple neg thats it but I still want to be normal.

I also think because we have had BC, and we see people like Kylie etc enjoying or seem to be coming to terms with it we seem to beat ourselfs up.

Just getting over this disease and carrying on or doing what we can is great, we are still here but saying that on low days etc we shouldnt feel bad about shouting screaming etc

Like Magz I get comments from so called friends like “perhaps if you come back to work you will feel normal!!!”
You look great you must be feeling well!!! I have one boob (waiting for recon) my hair is growing but i wear a wig out, pile on the makeup and try to look the best I can for others that in its self is very hard work!!!

All I can say is thank God for this forum so we can vent out our probs, feelings etc and a big pat on the back and hug to all of us who have gone through or going through treatment no one really knows what its like until they have unfortunatley been down the same path.

I would like to thank everyone for their comments they have really helped me. I was refered by my doctor to a counsellor who specialises in oncology patients, unfortunately I have been told that she can now only see palliative care patients and noone else is seeing oncology patients because there is no funding for such a person. I feel this would have really benefited me so now I am looking for alternatives.

best wishes
Dawne

Hi dawne,
don’t worry too much about not being to see a counsellor who specialises in oncology patients. All counsellors accessed via the NHS will be fully competent to help you with the issues you are facing. I saw the counsellor attached to my gp surgery who was very helpful. Maybe ask your gp if there is another counsellor he/she can refer you to or you can refer yourself to, the local macmillan nurses may be able to help with suggestions for counselling as well. best of luck in getting it sorted,
rivergirl.