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Life after a breast cancer diagnosis Coping with fear and anxiety
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Hi,

I have breast cancer which spread to lymph nodes which i have had removed, finished 5 out of 6 rounds of chemo and completed 15 rounds of radiotherapy. During my chemo treatment I was hospitalised with sepsis and then hospitalised again end of December with full blown flu group A which was really frightening and I thought that was the end for me I was so ill. Now that the treatment is complete as far as the oncologist is concerned I feel I have been forgotten about, I don’t know what happens now, no one has said if the cancer has fully gone and I feel there is no one I can talk to who can relate to how I’m feeling. I am constantly tired, my legs ache from my hips to my ankles and the pain relief I have isn’t helping. I don’t think I’m helping myself as I don’t leave the house except one day a week with my partner to go shopping as I’m scared but scared of what? I don’t know, is the fear I will get ill again? Is it not wanting to see anyone as the conversation is always about the cancer? I just want to be me again but I don’t know how. Does anyone else have these issues or am I just being melodramstic/stupid and just need to get on with everything somehow.

Also I am having to give up work as my job is working 8 hours a day constantly on your feet, I know my body cannot cope with that anymore. I just feel so alone and that no one seems to understand how I’m feeling as I have always put a brave face on everything so no one could see I was actually weak.

Sorry for going on and on but this is just the tip of the iceberg that I need to get off my chest.

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Hi Mags

I’m so sorry you’re going through all this. So much of what you wrote reminded me of my experience with primary breast cancer. Your use of language was very interesting - wishing not to appear weak, feeling melodramatic or stupid. You are being very hard on yourself. This is a life-changing illness which you’ve now got through but what now? There is an old but excellent article written by an oncology psychologist which I’ll give you the link to. But there are a couple of things you can do so that you can move forward from this.

First, it’s not good enough that you feel you’ve been left high and dry without even being informed that you are cured. At least I was told the treatment had been successful, there was no sign of cancer - but that I was very high risk of secondary bc and to stay alert. How helpful. I would suggest you ring your breast care nurse (who in theory is there for you for the rest of your life) and tell her that you feel uncertain about your future, not knowing if you are clear, what follow-up checks there will be etc. She should be in a position to reassure you or to make an appointment at the breast clinic so you can get your questions answered.

Second, you come across as somewhat depressed. Your hospital should have a support service through which you could have at least 6 sessions of counselling, the chance to articulate your fears and worries. I believe a similar service is offered by Macmillan. Your hospital or a neighbouring hospital may have a Maggie’s Centre, always a good place to visit. You might find just ringing the breast care nurses’ helpline (number top right) reassuring - their service is excellent and they can advise you where to look next. Failing that, you might try your GP.

Another thing to consider is self-help. Yoga, running, meditation, mindfulness - anything tha takes your mind off things for a while. I used YouTube videos by Progressive Hypnosis throughout my treatment and still tune in to a couple of them. They are simple meditations but, with daily practice, they really do help. There are also the NHS-endorsed apps like Calm and Headspace.

Giving up work is a huge step, leaving you with more time with nothing to fill your time than thoughts of cancer. You are registered as disabled under the 2010 Equalities Act and your employer must adapt to your needs, whether it be reducing your hours, finding practical ways to ensure you aren’t on your feet 8 hours a day etc. I would suggest you get in touch with Macmillan. One of their line options is Work and you’ll be put in touch with a local adviser. If you do have to give up work, they will help you with benefits etc.

There are also courses run by charities like Look Good, Feel Better which give you the chance to socialise while experimenting with make up (and getting lots of free goodies), there are online exercise opportunities which can be fun and there should be a course called Moving Forward.

I do hope you manage to get this experience into context and can move on without this huge cloud over you. Wishing you all the best

Jan x

workingwithcancer.co.uk/wp-content/uploads/2013/03/After-the-treatment-finishes-then-what.pdf

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Dear @Mags59 

 I had an easier ride with it than you but while I was recovering from each stage of treatment all I was focussed on was getting to the next one and through that . It wasn’t until it was finished that it all hit me . My GP was querying when I would be fit to go back to work and all I could say was " I’m sorry I’m just not ready " whilst trying not to cry . I did still have a few physical niggles but on the whole I couldn’t explain to him WHY I wasn’t ready and what’s more I felt guilty about it. It took me doing the Moving Forward course to realise that most of the other people on the course were feeling the same way and that it’s perfectly normal because while you’ve got your head down working through the treatment you’ve got neither the time nor the energy to process it all .

As for putting on a brave face - yes lots of us do that , our own feelings are enough to deal with . If we say something that makes someone else feel emotional then we have to rescue them / the situation - I certainly wasn’t up to that . You’ve been through a lot , you may not even feel like yourself yet but you’re still here and you’re the very opposite of weak . 

In your case you have had a truly frightening experience - so it will take time for you to work through that and fully recover , and unfortunately these things things can’t be rushed . However you have been left with unanswered questions and I doubt you will be able to close this chapter until you get your answers so yes reach out to your BCN . I would advise contacting your GP/ Surgery - your Consultant communicates with your surgery who should send copies of all correspondence to you, so make sure that you have received everything that they have received. 

 As regards talking about cancer all the time the day before I went for my radiotherapy scan I went to a former colleague’s funeral . I saw people I had not seen for ages who didn’t know about my cancer so I ended up talking about it . I was worried that with it being a funeral as well I would get upset and embarrass myself but I didn’t. I did grumble to a long standing colleague that I felt really boring as all I had to talk about was cancer and she just laughed and that was the end of it.

For a couple of months after treatment had finished if I bumped into certain people they would always ask about it - as time went on I didn’t want to talk about it so I gently turned the conversation elsewhere and they stopped asking. There are a few insensitive people about - but on the whole people are nice , they’re trying to be considerate and can take a gentle hint . When you do start meeting people again Mags there will soon be other things to talk about believe me .

 In the meantime is there a Breast Care Support group near you ? I benefitted from going to one last year - many of the people there will be having the same issues as you and it would be a safe place for you to talk about your cancer if you need to. It’s a good place to ask for practical help too.

As to work - have you been in touch with them , or they with you ? You are still recovering physically and mentally and this does not sound like the time to make a snap decision .

Prior to having cancer I had another serious condition and thought I might have to stop work , I also had a useless manager who wasn’t following the correct procedures . Despite being a complete mess psychologically I reached out to the OH Dept and Union Rep myself and things were put back on track . I now work at a lower pay grade and fewer hours than I did but it’s less tiring less stressful less responsibility and I enjoy the job more.

If you’re up to it then maybe you and your partner could look at your finances and work out your options .BC has a way of making you reassess your priorities so when you start to feel a little better if you weren’t happy in your work and don’t want to go back to that job permanently then this might be an opportunity for you to look for something else.

I’ve also read Jan’s post and her advice and suggestions of who to contact/ what to do all seem excellent to me .

With very best wishes for your recovery

Joanne  x

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There are a lot of worries here. You had some very traumatic after effects of treatment and your life has been turned upside down. You have much lower energy than you had before. You have lost confidence and you are demoralised. But the only way is up! I found that accepting my life had changed and that I was angry and asking “why me???” was helped when instead I asked “why not me” and “who am I?”. Am I just a sick woman a patient with breast cancer or am I someone who exists beyond breast cancer or any other disease. Do I have a right to enjoy life whether I am energetic or not? Am I just a wage slave? NO I AM NOT. You need to put yourself first, accept you need positive things in your life. Do something you enjoy just for yourself. Look outward. You deserve joy and laughter. 

I have been where you are now. I do go there sometimes. Look on it as a dark wood. Don’t go in it for too long. Keep active. Do the washing up, wear the nicest clothes you can that make you feel good. Go to the hairdresser. Do some swimming or massage. Investigate what allowances may be available. Do you have friends? If not, keep coming here and someone will help.

Seagulls

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Thank you JoanneN for replying to my post.

I have spoken to my employer about being paid off due to incapacity for work (unable to do my job), they have been fantastic trying to see what they could do to help, reduced hours, lighter duties but I personally don’t think this is possible as my legs are really weak and as my employment is in a convience store all the jobs are shop work which means being  constantly on my feet. My employer got OH to contact me and they have given me until November/December to see if there is any improvement and if I could go back part time so will wait and see how I go.

I am in contact with my GP on a regular basis as my mental health is really bad just now and it doesn’t help that I cant/won’t leave the house, I am waiting to receive counselling so fingers crossed.

As for contacting my BCN I have no idea who they are or how to contact them or I definitely would have.

But onwards and upwards as they say, one step/day at a time and im sure I will get there.

Thanks again for your reply.

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Hi,

I just wanted to say I can relate to a lot of your worries & concerns.

It is just over 4 months since I had the mammogram that kicked off my cancer journey, and in that time I’ve had biopsies, cancer diagnosis, lumpectomy & lymph node surgery, surgical results, oncology consultation & radiotherapy. That out-of-control feeling of being on an escalator to another medical appointment has just finished but now it’s time to process what has just happened.

If you call the hospital where you had your surgery, they will put you through to the breast care nurses. Ask them all your questions, about your treatment plan & outcomes, for information on counselling, holistic therapies & treatments, for support you can access from home. Also contact the Breast Cancer Now nurses by phone or email.

Are you on any meds for your MH right now? Maybe they need a tweak following the changes in your health? Ask your GP for referrals to counselling, support and ask for their advice about your job. It should not be up to you to decide if you have to leave, work, your GP & Occy Health all have a part in making an informed decision about that.

Thinking of you x

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Hi again 

If you’re in contact with your surgery is your GP able to clear up any of your unanswered questions ? I’m sure they could refer you back to the Breast Clinic if you wanted . Also if you ring the helpline here and go through with them what you do know they might be able to support you and help you to know how to proceed to get some answers and maybe help with some of the other things as well .

 I know what it’s like when you’re up against a time frame - it can cause extra pressure . I’m hoping that the counselling helps you - when I had the other condition I referred to it did help me to accept the changes it had caused . You have got some recovery time though and if you don’t feel like going out maybe you could look into applying for the Moving Forward course online ( I did mine online ) and join in with your group as much or little as you like but the resources were what I found most helpful . 

 Like Jan I recommend mindfulness ( when you get your counselling your Counsellor will be able to guide you if you’re unsure ) . My  Surgery has a Physiotherapist one session a week - I’ve had upper back and shoulder injuries and had one appointment face to face and one over the phone with an exercise program sent by email . If your Surgery has the same they might be able to help you build up your strength . 

You’ve been through an awful lot and yes it’s one step at a time. 

Joanne x

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Hi Flossie64,

Thank you for your reply, I have made contacted regarding counselling so will hear next week which is great. I am on medication for my MH but will speak to my doctor regarding needing the dosage increased.

It was me that said I didn’t think I could continue in my workplace, my employers have been fantastic offering shorter hours, days etc. but I think because of how I’m feeling I felt I couldn’t do anything, so my employers next step was OH, who have not said I can’t work but just not at the moment and will review in 4 months to see if i feel any different regarding my job which I hope I will be but definitely short hours.

I managed to go out for a short walk today with my grandson for support, it was scary as the buildings, trees etc. Looked as though they were coming in to me to kind of enclose me, but I just focused on talking to my grandson and I am proud to say I achieved my first attempt at leaving the house.

Thank you for your support.

Take care, thinking of you.

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Hi Seagulls,

Thank your for your advice, your right I have to accept yes my life has changed but I am still ME, not the same me and I need to put my needs, ambitions etc into practise and I need to realise this will all take time even though I am a person who likes to get up and do things but with not having the energy felt as if my life as I knew it was over and I wasn’t able to move on to start my life over as I was so low, tired all the time and painful legs limiting my mobility but I now realise I can and will do this and I am prepared to deal with this  no matter how long it takes. I also hope this positivity I am feeling today lasts.

Thank you again for taking the time to message me I appreciate it very much. 

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Well done for getting out.

The first time is the hardest. Keep stepping out.

Seagulls

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I think you need a good laugh and to let go of that horrible anxiety that makes us feel so miserable. It won’t help to imagine what can happen as we cannot predict anything. It would be bad if we could. We are not little Gods but we need a break. Let everything go hang and concentrate on making you and your nearest as happy as you can. Look at cancer and shout at it GO AWAY!!! 

There’s nothing to be gained thinking the worst. Keep an open mind and remember you have dealt with some horrible things. You may not think you did very well, but you got through it, one step at a time, however awful it was. Well done you.

Seagulls

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