Please can someone help me, I am crumbling, I had a lumpectomy with flap to reconstruct and sentinel lymph nodes removed to be tested, although clear on ultrasound. The op was 18th March, the day after I had a heamotoma so was back to theatre to stop the bleeding. I was eventually discharged two days after initially going in with antibiotics as a precaution, iron tablets as my iron levels were low and a drain. I am so bruised and everyone who has seen the photos keeps telling me they have never seen anyone bruise so much, even my pubic bone is black right across with bruising. It will have been two weeks since my initial op tomorrow and I still have my drain in which is affected me psychologically so much I haven’t had one good nights sleep yet and the sleep deprivation is making me feel so much less resilient. Today I had my dressing changed for the second time and I was preying the drain would be removed but there was still 40ml draining during the last 24 hours and the hospital staff have told me I can’t have it out until it is only draining 10ml in 24 hours, I am mentally destroyed and keep saying to my husband that people wouldn’t let an animal suffer like I am and that the animal would be put down, this is upsetting my husband and I feel bad for thinking this way but I so done with this journey and I haven’t even had the results back until 2 weeks time, I even told my husband that if I need chemo I will refuse it and take my chances, I probably don’t mean it and its probably the way I am feeling. Sorry for the long rant everyone and well done if you got this far. Please can anyone give me some tips on how to cope emotionally when I feel so tired of being tired. Prior to finding out I had BC I was living my best life exercising 6 days a week and training for my forth marathon, now I am just completely lost in a maze where it feels like there is no way out.
I had a similar spectacular (ie multi haematoma) start and was very anaemic. They made me keep the haematomas until a 2nd surgery. I was pretty cheesed off and angry. Doing a gratitudes list is corny but helped as did getting out for short walks. Getting the iron in was good, too. I had another wobble about something else recently and phoned the MacMillan helpline. I wish id done that the first time. They must be so used to people feeling frustrated and low! You are obviously a sporty person - doing a version of something you’ve always enjoyed might also help. The Penny Brohn Centre is geared towards life style support to help us cope. Lots of online classes. Check it out.
You will get there, though. You will get your mojo back when you feel physically more on top of things and have managed a bit more sleep. X
You are deep in the thick of it. All that you are feeling is valid. You won’t always feel as you do today. The ups and downs are hard to navigate and feeling down is to be expected and normal.
If you were your best friend what would you be telling yourself? How bloody amazing you are that you’ve got to where you are at now. I don’t what you’ve been through to get you to where you are now but I suspect you’ve endured the following:-
- You have been through investigations to get to the diagnosis.
- You’ve had to sit and listen when the ‘bad news’ was given.
- You’ve had to tell those you love in your life your diagnosis and likely had to deal with their reactions.
- You’ve had discussion with the surgeon about your surgical options and you decided what’s best for you.
- You’ve shown up for your surgery and put your trust in the hands of the surgeon, anaesthetist, theatre staff, recovery nurses and then the nurses on the ward.
It takes weeks to recover from the surgery and the anaesthetic then there is the emotional toil to contend with too. The relief that the surgery is over then the wait for the results and the next part of the plan.
Whilst it’s disappointing that the drain wasn’t removed, it’s doing its job. Best that collection of blood works its way into the drain rather than collecting in you. I had a haematoma following MRI guided biopsies. The whole of my breast was bruised for months and I could still feel a lump 6 months later when I went for surgery. Some of us just bruise more than others and take longer to heal.
It is all a lot when you think about what you’ve been through. If you’ve done all of that, then you can get through the next part too. The reality is the alternative isn’t an option when you want to get your life back.
You won’t always feel as you do now. X
Thank you so much for taking the time to reply, it means a lot. I will check out the Penny Brohn Centre, thank you. Also I am sorry that you were made to wait for surgery, I can understand how that must have made you feel and looking back I am grateful that it was dealt with the following day. Sometimes we forget when we are in the thick of it that things can always be worse and others often have similiar or worse experiences, helping me to see things from a different perspective has helped me, thank you x
Thank you for taking the time to reply and giving me some perspective to remind myself of everything I have already been through and my ability to cope with all of that. Sometimes when you are in the thick of each it is easy to forget how far I have come so far. The gentle reminder that I won’t always feel like this is something that I need to etch into my brain. Good days and bad days, somehow we all have a track record of 100% getting through them x
When you’ve been so active and working towards a goal it’s so tough to feel like it’s been taken away, and that’s before you even factor in recovering from surgery and lack of sleep. No wonder you are feeling as you are. You’ve been through a lot.
Same as you I was living my best life and getting ready to do my first half when diagnosed. I hated feeling that loss as training becomes such a huge part of your wellbeing, identity and often social connections. So, my tip for coping would be to start making your plan for getting back to what you love. Not right now, once you’re feeling stronger and had some rest, but start putting the wheels in motion mentally. Decide what your first step will be when you feel well enough. It could be something tiny, it doesn’t matter, but make that decision. It will feel strange when you’ve been used to achievements like running marathons (well done!) but having a gentle plan with realistic small steps genuinely helps to look forward and feel more positive, at least it did for me.
I decided once I could drive again I would go to the gym and walk on the treadmill. Only for a few minutes, slowly, nothing strenuous or bouncy, but to take those first steps back towards my usual routine. Next time I walked a few minutes longer. Then built to a gradual incline. Then gentle jogging. And so on. Like a mini training plan but one that’s flexible and kind and the only things that dictate how you progress is you and how you are feeling.
When you’re in the thick of it these things can seem unimaginable, but hopefully when you’ve managed to get some proper rest and recovering you will feel more ready to start getting back what you love. x
Thank you for your reply, yes I agree having a practical plan in place, however small, will help me feel that I have a little agency over what I can do to help myself feel so much better. I feel like I have been robbed of the wonderful active life I had, I know I will gradually get this back but right now it feels a long way off. In my naivety I never imagined that I would feel this low. Despite having to cancel the Manchester Marathon next month I did get into the Chicago Marathon via the ballot in October, so I am praying that I will be able to do this, I am not a fast runner anyway so jeffing the Marathon won’t bother me so long as I can get to do it, fingers crossed x
Chicago is your new goal xx
I just wanted to pop on and say that I’m sorry you have had such a bad experience with the haematoma . Something similar happened to someone I work with after lumpectomy and it was very frightening and traumatic for her also but she has fully recovered from it and you will too . It does feel unnatural to have a drain in place but try to think of it as your helper that is allowing you body to rid itself of this unwanted fluid .
It’s been awful for you but please have faith and remind yourself that this will pass - everyone replying to you here is a walking talking writing survival story and if you stay on the forum in a few months or a year you may be the one sending a message of support and encouragement to someone else . I know it’s hard to believe right now but it’s true .
I hope that just expressing how you feel might have helped you - sometimes it does help to just get it out there and be heard.
Right now you’re overwhelmed - everyone hits a point or more than one where they feel that their life has been stolen/ turned upside down and they’ve been caterpulted into a horrible alternate dimension and not having control over your life or your body is one of the hardest things to deal with - especially when you are used to being so fit .
It seems to me that lack of sleep is your worst problem right now and it’s driving your emotions so I ‘m going to offer some practical advice and please forgive me if you have tried these things already .
A lot of people especially those who are normally side sleepers have found benefit from sleeping with a large V shaped pillow . Do you have one of the little heart shaped pillows ? Sometimes they are given out for free otherwise can be bought very inexpensively online and would give your bad arm / shoulder some support as well as space for your drain .
Some people have little bags for their drains with carrying straps and it may be possible to use the straps with a bit of tape ( to your clothing not your skin ) to keep the drain in a position where it won’t move about too much.
If you’re worried about leakage from your drain then puppy pads are useful and inexpensive.
Bamboo or other viscose sheets and silky fabrics make moving in bed easy - I have found this has helped me a lot through several upper back injuries over the years.
I would also recommend ear pods and an audio book or music .
Cut your caffeine intake particularly coffee - you may be having more in the day to stay alert because you’re tired but it will drive your anxiety and don’t have any after 6.30 pm.
If you are struggling with pain make sure that you’re taking your pain relief regularly throughout the day as well as before bed to make sure that there’s a constant level of it in your body .
If the difficulty sleeping persists contact your GP - even if you only take something for a short time it may help you get into a routine . If your pain relief isn’t helping they might be able to look at giving you something else that would help with pain as well as sleep in the short term . You could also contact MacMillan for support or the Breast Care Nurses on the helpline on this site - they have heard it all believe me .
I’m hoping that you will be asleep by now and not reading this but if you are reading this I’m sending you a big virtual hug xx
Thank you @JoanneN this is super helpful, yes it is my emotions that were sparked by having had a diagnosis of general anxiety disorder a while back, ADHD and lack of sleep. Ordinary I am very positive and resilient, attributes that enable me to run marathons but the shock of this diagnosis has sent me into a spiral and it is the lack of sleep that is affecting my coping mechanisms. I do have a v shaped pillow, only have one cup of caffeinated tea a day but mostly my fears come from my GAD, I can try and sleep more in the day I think that this will help me. Your tips are really helpful and thank you for your kind comment at a time when I felt very low but much better today x
If you haven’t had any bloods taken since your emergency surgery it might be a good idea to ask your surgery to do some as you might be a bit anaemic as well . Glad you are feeling a bit better xx
I can see that there have been lovely, supportive and wise responses to your understandable feelings and thoughts. A wonderful circle of women.
It is so deeply upsetting and you are at the worst stage; exhausted from lack of sleep, drain still in with the mental, physical and emotional impact this has and an unclear diagnosis without a known roadmap as yet. And, on top of that, you have gone from athelete to feeling overwhelmed and many other emotions.
To put it bluntly, its a bit like hitting a brick wall. We all have, in our own different ways and various journeys. Some can be jumped over, some need a ladder and some tower over us, looming with darkness.
But. You will get through this. It will be one step at a time, being kind and gentle with yourself. The drain will come out, your sleep will improve, you will have a full diagnosis and a treatment road map. It is a tough journey but it does get easier.
You have shown real courage and strength asking for support x
Thank you for your kind words I do feel much better, today I was told that the earliest the drain will be out is next Tuesday because the breast care nurses aren’t there tomorrow and Monday and I have felt differently this time, although it’s not ideal it is there with good reason. I had set myself up for it to come out and when it didn’t it hit hard, like you said hit a brick wall, this is unknown territory and I am more settled now and learning to ride the waves. Thank you for taking the time to comment I appreciate the support x
I hear you and that makes perfect sense.
The drains are hard going in many ways. Well done for getting through it and roll on Tuesday for you. You’ve got this 
I found that giving myself little challenges, treats or things to look forward to helped me through after my surgery. It can be a long lonely time. I did little things like ; tomorrow I will… walk round the garden, make myself some lunch unaided, paint my nails, invite someone round for a cuppa etc. Just a little something each day to help to keep me focused and challenged. I got fed up of relying on people to help me to do things. Don’t shut people out though, if they offer to help you then let them. It is a difficult journey but you need to make it ‘your’ journey. Don’t compare it to others and don’t compare recovery times either. My recovery has been longer than I had expected (and had read) but the consultants have said that everything is normal.
I really hope that you’re doing ok. I see it like climbing the spiral stairs to a super high slide. I’m still climbing, at my pace, but everyone will definitely know when I’m ready to slide 
down, they’ll certainly hear me and those that supported me on my journey will be at the bottom to catch me! Take care 
Thank you and all the best to you on this journey, the one that no-one wanted to be on but the one that we can manage one day or as you say one step at a time. I managed a walk outside today for the first time two weeks after surgery, today has been the first day where I have felt somewhere near how I felt before the surgery, aside from the discomfort, bruising and drain, onwards and upwards xx
Hey! Totally relate to this as I had something very similar. I had 7 biopsies done in one day - both breasts, MRI, vacuum and core and was bruised black and blue for weeks! (I have a low platelet count, giant platelets and bruise easily). There was a lot of internal hematoma so they had to perform a wide excision Lumpectomy with flap (cause the tissues near the tumour collapsed due to internal hematomas). The other breast had no tumour but due to extensive internal hematoma, they had to aspirate (I’m still waiting for some of it to be liquified - there are large painful clots that prevent me from sleeping on either side the cut ran to my back so sleeping on my back was painful too. 
My drain was in place for almost 20 days. So totally get your frustration.
What helped me was normalising the whole experience. We can trick our mind into believing that it’s all fine, treat this as another adventure, stay positive, keep smiling, do things that make you happy. I would shove my drain into a backpack and go to cafes and restaurants. Also, don’t dwell on what’s happening. Stay focused on recovery, make plans for the future. This is just a bump in the road and this too will pass. Don’t think too much about it, take it in your stride with a smile and a shrug - you’ve got this! Surround yourself with positive people and stay away from negative energies or from people who make you feel bad about your situation. Show them that you are not beaten and it’s not gotten the better of you and that you are still in charge of your life. Cause you are!! I am also in the midst of my journey and currently going through radiation therapy followed by 10 years of endocrine therapy. Smile, it’s all good. You’ve got this, girl! Hugs xx
Arrhh thank you for the reply and for sharing your experience, it’s a wild adventure that’s for sure. I have a cross body bag for my drain I may try a small backpack that’s a great idea thank you. Yes I hear you on the sleep deficit it’s a real challenge trying to get comfortable enough to sleep, fortunately and thankfully I can sleep in the day. Like you I am on hormone blockers for the next 5-7 years they have said. I get my results back in two weeks so preying for the best outcome possibly but in the meantime learning to ride the waves of this chapter. Good luck with your treatment xx
I’m sorry you’re going through this, it really is crap - thank goodness for the support here. I wanted to say I too had a haematoma after my surgery and it took longer to heal than normal. I got quite down about it but my favourite nurse told me it would heal in time and this period would fade into my history. She was right. It stopped me returning to running when I wanted to (another marathon runner here) but patience paid off, that and protein at every meal! Prioritise protein like it’s your job!
I finished treatment in November (I had chemo & radio after my mastectomy & DIEP flap surgery) and I am training for London Marathon which I had to defer from last April due to my diagnosis and surgery. Back then I watched it on TV as I practiced walking around the house. One year on, and 5 months after finishing treatment and I did 16 miles today. It was very hard as I lost so much fitness, and not least because it’s flipping windy today! But I did it. And I plan to start the marathon and see how it goes. I know that I might not finish it but I’m excited to try.
What I want you to know is that I felt similar to you back then, goodness me I wouldn’t wish this on anyone and I’m so sorry you have to walk this path. But there is life on the other side with possibilities to do fun things (like jeffing 16 miles in stupid wind) or whatever takes your fancy. Marathon runners are determined, stubborn, used to discomfort, and excellent at long term projects - use those skills now. We can do hard things. Much love x
Thank you so much for your reply. `It is reassuring from your post that there is hope for me, of course we all know this but as you said you got quite down about it, this is where I am now but good to know this period in this chapter will soon become history. `I am trying to prioritise protein at every meal but in between I am eating a lot of chocolate, crisps and sweets, an attempt to give me some comfort, I am a comfort eater and this is causing me more stress because I am putting weight on, any tips on how to tackle this? I am sorry that you had to defer London, that must have been difficult for you at the time but so glad that you are able to run or Jeff it this year. I have read lots of people getting PB’s using the Galloway Method and avoiding injuries too, this is the approach I am going to take when I do start running again. Good luck in the London marathon I’ll be thinking about you, I am hoping to do this one next year. Also well done on doing 16 miles that must have felt like a huge win, especially in the wind, it never seems to blow behind me when I’m running always against me lol, one of life’s mysteries i guess. One of the skills I use when running Marathons is to smile even through the discomfort my hubby reminded me of this recently so I have been trying to do this, it convinces the brain that everything is okay. So the two questions I have for you as a fellow marathon runner if you get chance to reply, how to deal with comfort eating and the weight gain and when were you able to start exercising again, I would like to start with light weights in the gym and gentle jogging when I am able to, the surgeon said no exercise for 6 weeks I’m just over 2 weeks out so 4 more to go so I am trusting him on this one, I had a lumpectomy, a chest wall perforator flap which is what led to the haematoma and sentinel lymph nodes removed for checking even though these were clear on ultrasound. Thank you in advance xx