Hi everyone. I was diagnosed with breast cancer in Jan 2020 after my 1st mammogram. I had a mastectomy followed by a lymphectomy as cancer was found in the sentinel node. All nodes then removed were clear This was followed by radiotherapy, and I’m taking zoladex and exemestane. This May after my 2nd mammogram I had a 2nd mastectomy as they found DCIS. I have just started on a phased return to work and am really struggling with energy levels, and also with certain family members who think I should be mentally and physically back to normal now.
Just wondering how long others have experienced high levels of fatigue for, and if you have any tips for getting over to people what fatigue is like? I feel guilty for not doing more, especially to help my brother with looking after my mum who isn’t too well, but I really feel that I can’t take on any more at the moment!
There’s fatigue linked to your hormone therapy, there’s fatigue brought on by chemo and emotional fatigue. Your world is turned upside down, your sense of safety reduced, your certainties no longer certainties… wouldn’t you feel someone was quite justified in feeling they’re struggling? We all react to treatment in different ways, we all struggle with unfamiliar emotions and, let’s face it, hospitals focus on the physical and may well overlook the emotional, which is outsourced to charities which had to close in the pandemic. So you’ve also been deprived of a lot of support you might have had. You’ve had a raw deal in fact, on top of traumatising surgery. You could maybe start by ringing the nurses at the number above. They’ll have advice about dealing with fatigue. I wasn’t happy with the advice a nurse gave - keep walking further than you think you can and you’ll get through it. Great. I could barely walk with joint pain.
Do you know that your employer was obliged to register you as disabled once you had your cancer diagnosis. This means they must make adjustments to your work environment, phased return to work, reduced hours, whatever is specified in the Equalities Act 2010 and its updates. So if you are finding work difficult owing to fatigue, your employer must support you by law. Macmillan is very good at advising on your employment rights (see their helpline). Maybe you could contact them in case you need to reduce your hours or take leave again.
As for family and friends, there isn’t much I can suggest, Neither of my brothers has ever asked after my health, despite knowing I have secondary cancer. One has health anxiety, the other is too busy the other side of the world. Cancer can feel quite isolating and it’s hurtful when people say how well we are doing, how glad we must feel that life is back to normal - you can only educate them by not accepting their comments but, if you have fatigue, you won’t have the energy to bother. Ignore it if you can. I imagine your brother’s expectations are influenced by his not wishing to accept responsibility for caring for your mother. You can’t change that so ignore the digs if you can - you have to be your top priority or you will never regain your health.
There’s an excellent article about life after cancer that may have something that helps:
I had completed radiotherapy last week and feel absolutely exhausted. Cant walk much, eating drinking is an issue. I am so alone as i have no family friends around. I feel isolated.
Oh you poor love - I’m so sorry that you have to go through this alone and hopefully we can lend a little psychological support. I also had fatigue and felt sick at times. I struggled to eat but found the act of eating seemed to make me feel a bit better. The important thing is to keep up your fluid intake as radiotherapy can make you dehydrated which adds to the fatigue . I found any food or drink with ginger in it was helpful and I also ate mints . Cola is also good for nausea of all kinds and may give you a bit of energy . Try to have some water and a little snack or two - don’t worry about eating healthily if there’s something that you fancy then have it. I also found it helpful to listen to Headspace when I wasn’t able to do anything else .
Make sure you keep up with moisturising your breast and the post- op arm exercises to help keep the tissues supple . Think of me as that bossy Nurse that when you’re in Hospital makes you get up and walk round your bed and have a drink of water and a bite to eat ( even if you don’t want to ) . If you aren’t feeling any better on Monday you could ring the helpline and speak to the Nurses who might have a bit more advice for you on 0808 800 6000 . For me it started to lift after just over a week though you may find it hard some days are better than others for quite a while. Take care of yourself , feel free to message back though hopefully it will have helped a little just to tell someone how you are feeling . Xx
Thank you Joanne. I am from the uk working abroad since the last nearly 2 years. Hence all my family in the uk. The problem is that no one in the uk wants to give support when they hear that but where i am currently , i am just left to my own devices.
I am going through hysterectomy in a few days due to my cancer bring estrogen positive. I did not tolerate Tamoxefin hence the only option i waa told i have. Its that loneliness that hits hard.
I cant sip water , dont like the flavour still forcing myself but its hard. Juices have high amount of sugar. Food and drink here is so different so missing my food from back home.
Ah that’s hard and a lot to go through especially alone. Hope you are feeling a little better - if you don’t like water then maybe try some kind of tea - mint , chamomile . I’m ending hugs . Xx
This was followed by radiotherapy, and I’m taking zoladex and exemestane. This May after my 2nd mammogram I had a 2nd mastectomy as they found DCIS. I have just started on a phased return to work and am really struggling with energy levels, and also with certain family members who think I should be mentally and physically back to normal now.