I finished treatment 15 months ago after a mastectomy, my recon failed due to previous surgery but no chemo/rads. Things have been very difficult as it’s taken a long time to realise exactly what had happened to me. I thought I’d have my op, get rid of the cancer and move on. Unfortunately it hasn’t been like that and I’ve just started counselling again which is difficult but I think is helping. I’ve really struggled post treatment and it’s brought up a lot of other things which has resulted in depression.
Today I’m fed. I’m on Letrozole which causes debilitating headaches, hot flushes which are increasing, I ache so badly and it’s getting worse, my hands and feet feel numb. I’m trying to exercise more but it isn’t helping and my whole body hurts. I’ve got post mastectomy pain going through my chest, my arm, back and ribs. All follow up appointments have been cancelled so no reassurance a year on everything is ok or chance to discuss how I’m feeling. I’ve no idea when I’ll be able to have the recon in the hope that I’ll start to put this behind me. I suffered with anxiety through treatment which was really bad with lots of physical effects and in the last few days they’ve returned but I’ve no idea why as nothing has changed.
While dealing with all of this and feeling as bad as I do, to everyone else I’m supposed to be over it and back to normal!!! I don’t say anything about how I’m feeling as no one really understands why I still feel like i do. It would be nice if just once someone didn’t give me a dozen things I need to do to that would help and just say, it’s rubbish isn’t it! Sorry I just needed to offload how I’m feeling xx
Lucy51 It’s F**king Crap and you are most definitely allowed to say that here! We ALL get it and most of us if not all of us have felt that way, at some point in our Cancer ‘journey’!
I coasted through the Cancer ‘treatment’ fairly well, it was after it was over that I realised what had happened and how I really felt. So it’s not unusual to go through a lot of emotion after the Cancer is dealt with! Well let’s face it it’s never really dealt with! We are left with a different looking body or side effects from treatment plus our fears for the future! It’s all very surreal and not what we ever expected to be happening to us! Add to that people around us assuming life is back to normal and we are left feeling scared, confused and alone!
Although I can’t make you feel better I can reassure you that while on here you are NEVER alone. There will always be someone around to listen to you and support you but most importantly understand you!
You are allowed to shout, scream, moan whatever you need to do to help you feel heard! We all do the “I’m fine” when people ask how we are! Let’s face it most people wouldn’t understand if we told them the truth! But we do understand and we will be here to help and support while you work through these feelings! It takes time, but eventually you will start to feel better about things and less confused and although life will never be the same again, it can be ‘fun’ again, it can be ‘happy’ again, you will be YOU again. Just be patient, you will get through this!
For now it sounds like you need some support from your medical team. Do you have a Breast Care Nurse that you can contact? See if they can organise an appt for you? Even if it’s a video call? Sounds like you are feeling let down by your team! I know Covid has affected things, but that’s no excuse for people to feel abandoned! Sometimes you have to make a bit of noise to be heard!! So pick up that phone and call your BCN and talk to her, that’s what she’s there for! If you have one!! Otherwise contact your hospital and talk to someone and find out what’s happening!
I hope this helps a little. Take care Hun. Always here to listen. Sal xxxxxx
Hi Lucy51
I think reading your first paragraph sums up probably part of the reason that you're 'not over it' yet. Your counselling has brought up a lot of other things you've said. It sounds rotten, but that's often the case with counselling before you get in a better mental health state you have to face up to the demons of your past and learn how to deal with them and it is a case of things get worse before they get better. But, on a positive note, when you have learned to deal with the other issues and faced them, you will 'just' be dealing with the cancer diagnosis. This does however explain why, that although you say nothing has changed, you're suffering anxiety again.
Do you have just one other person you could confide in? Although you do have your counsellor to talk to, perhaps you could use one other person who you know you could trust 100% who will support you through it all?
The letrozole also is reducing your oestrogen which is the happy hormone, so that also isn't helping - let alone you having side effects too! If you are able to do any exercise, I personally find this helps (I'm on Anastrozole) as exercise releases endorphins which could help counteract the letrozole effects a tiny bit.
I've just seen Londonlass post up whilst typing, so I'll not add any more as she says it better than me 
Hi Lucy51
Yes, I'm not surprised you are brought down by aching, it must feel awful! I've been very lucky on my Anastrozole, that I've very little in the way of side effects. Have you tried different brands of Letrozole as the coatings can cause these side effects (aching joints etc) I was given a brand once that - wow!! I couldn't believe what it did to me. I tested them twice and within 2 days they had the same effect. I use Teva brand now and also was fine on Accord (Accord no longer available). But worth trying to get different brands to see if any are better for you?
Also, I am a great advocate of drinking lots! I've always felt that fluid can help with so much. During radio, a couple of ladies who barely drank had terrible fatigue... I had more energy than usual - random!!! It could be worth upping your fluids to see if it makes any difference if you don't drink huge amounts? I have my tablet in the morning with a pint of squash and a mug of cofffee straight after. Then during a normal day, I'll have 8 mugs of tea (green and black) and another 3 or 4 mugs of coffee (caffeine and decaf) and glass squash or similar in the evenings.
Yes, I can totally understand why your friend doesn't understand how you're feeling as tbh, the only people who can really get it, are those that have been diagnosed with cancer. Don't hesitate to keep posting her for support as that's what we're her for
Lesley x
