Feeling blue

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Hey lovely people,  hope everyone is keeping well! I'm almost completing 2 years post mastectomy following a grade 3 DCIS diagnosis. I've had what specialists call the really treatable cancer, caught at a very early stage, with very good prognosis. Radio was considered after surgery , but surgery alone was sufficient to remove the cancer. I guess I should be happy right? Cancer free,  recovered well after surgery, I've got a promotion at work, really supportive working colleagues, loving partner and family, but still feeling really low. I find it hard to keep smiling when on the inside I'm crumbling. Unfortunately I've developed cording after 10 linphonodes have been removed when I had the mastectomy. Still struggling with aches. My body image has been affected massively, as I haven't had immediate reconstruction. Been referred to the hospital pain management for the aches I've been experiencing . But I'm still  not feeling ok, not feeling understood, feeling inadequate, feeling sad quite a lot of the times. Is anyone here experiencing similar things? Xxx 

  • Hi Miramar

    Just reaching out to you as your post really struck a chord with me.  Also had early stage cancer, surgery, radiotherapy that all went well and now on letrozole.  I don't work or have childcare responsibilities and just have to keep an eye on the in laws from time to time. I have a great husband too who is really supportive.  And yet, like you, two years on, I feel tired all the time, headaches, irritable, low, aches and pains in joints and where I had surgery and I go round and round in my head trying to work out if this is normal. It's exhausting! When you describe how you feel, well you could have been talking about me.  I don't have any solutions, other than I think cancer just knocks the stuffing out of you whatever the diagnosis and the effort it takes to deal with the fallout is misunderstood and different for all of us.  I'm never going to be the 'climb up a mountain, run a marathon , raise lots of money' type as I'm struggling just to get through the day most of the time and while it's great some people can do that and lots of other things, it does make me feel inadequate too.  I hope you have some success with the pain clinic - I find that reaching out for 'formal' help can be a huge effort too - so well done for pursuing it.  Maybe knowing you're not alone might be some help as well - I know reading your post helped me, so thank you. 

  • Hi Marimar,

    I’m totally understanding where you’re coming from, I have just had breast conserving surgery and awaiting results. I have really good days but have a total meltdown on occasions.

    Please don’t hide your emotions, I did this a few years ago and was very good at hiding behind a smile until I actually couldn’t keep it in anymore and the relief of telling my family exactly how I was feeling was so good as they made me see my GP and get the help I needed. Have you told anyone about how you’re feeling or seen a doctor?

    Please speak to somebody. I went through these awful feelings that your describing but please be assured that the right support is out there for you. 

    sending you hugs xxx

  • Hi Marimar, 

    I had a lumpectomy in April,  lymph nodes removed and have just finished my radiotherapy. The emotions and what you are going through is perfectly normal, being diagnosed with cancer is one hell of a journey and you will have your happy days and bloody awful days.

    if you haven’t already, please ring Macmillan, also do visit your nearest Macmillan centre, a list is on here, or ring them on 0808 808 0000, they are superbly helpful and give you lots of great info, do walks, talks, help with benefits, bills, open 10-4 Mon-Fri for coffee and chat and lots more. You may also find ‘People Like Me’ very helpful, they buddy you up with someone similar to you whose been through the same thing and this person rings you and you chat one to one about your problems. I am doing this now and I find it really beneficial, you can have as many or as few calls as you like and it’s all in complete confidence - 0800 138 6551.

    I also go for a short walk every day (British weather permitting) and do a daily diary, this is mega helpful, as it gets everything off your chest and out of your system. It is important during the day to keep yourself occupied, hobbies, interests etc., it stops you from dwelling on what is going on. You may also find it beneficial to listen to a meditation podcast, they really help you to relax especially when you are trying to get to sleep. I use one called ‘Go Gently’ by Christine Elizabeth Smith, it does a lot for me. 

    I know it’s hard sometimes, but try and keep as positive as you possibly can, have positive people around you and dump the negativity, above all, be kind to yourself - I promise you, you will get through this. You are never alone and can always come and chat to us shower in here.

    Keeping fingers and everything crossed for you.

    Take care and big hugs.xxx

  • Hi Miramar, may I ask if you are taking Tamoxifen or an Aromatase inhibitor as these can cause low mood, anxiety, bone / joint pains. It did this to me after being on Exemestane for 8 months. I described it as “ having the joy sucked out of my life”. I’m on a break right now whilst I evaluate whether to recommence it or not. I do feel a little lighter in mood but  feel I have a way to go. Even if you don’t take any medications, the stress & uncertainty of cancer can have a profound effect. I’d advise you to speak to your breast team or GP. Also, do you have a Maggies centre near you. They can offer support with your feelings. 

  • Hi, I just wanted to jump in here and say I too had issues with Exemestane - my consultant swapped me over to Tamoxifen and my body aches disappeared almost immediately. I do have higher anxiety than I used to but now I'm not aching so much I am back exercising which for me is the best thing for my mental health. If you are able to swap I would really recommend just to try it for 3 months.

  • Thanks for replying. Tamoxifen has been mentioned. Also Anastrozole but I’m wary about that as it is also an AI. Letrozole gave me an intense headache. I’m 2 weeks into an 8 week break so I do have time to reset & work my options out but good to know you are feeling better. 

  • How are you finding the break? 

  • In reality, a bit up & down. At the same appointment at breast unit I also told them that I had a sore area along the scar line & I was referred for a nuclear whole body scan as a precaution. I’m awaiting the results now & feeling apprehensive, although I’m sure they would have let me know by now if it is suspicious (1 week). When I went for the scan, I twisted my knee getting out of the car & the pain is stopping my daily walks- which like you, help clear my head. Apart from that, the heavy feeling in my bones has dissipated, the carpal tunnel syndrome has completely disappeared and although I’m still experiencing some low mood, it’s not as bad as the (almost) depression that I felt I could easily have slipped in to. I’m hoping it gets even better as time goes on.