DCIS pre op isolation loneliness-not sure what to expect

I was diagnosed with DCIS in right breast in Nov, surgery delayed but now given date 02/02. 
In non Covid times my friends and family would've visited and kept me busy but that can't happen.
I now can't even go out for a walk as am in pre op isolation for 14 days and post op for 3 days. I can't believe how much I'm struggling with it all.

My pre op assessment on 14/01 felt chaotic. The nurse was lovely but was understandably clearly stressed in these difficult times and just poured out all her troubles to me. The doctor wasn't available as they had Covid and no other doctor could see me so no chance to have the procedure explained or for me to ask questions about what will happen before, during and after or what sort of scarring I will have. I understand that is just how things are now and no one is to blame but it has oddly unnerved me.

I'm unsure if I need a Covid test before the op as I had Covid in Dec (it's been a tricky few months!). The nurse said it may lead to a false positive and she would have to find out. I also don't know when the wire will be put in. It maybe 01/02 or 02/02 but they couldn't tell me. They said they would ring me but they haven't and I don't want to ring them and be a nuisance.

My usually lovely husband couldn't attend any of the appointments because of Covid restrictions, seems very detached and is now camped out in in a separate room due to me isolating. 

I feel guilty for posting as I know it could be worse and my prognosis should be good but I'm just thinking about it and worrying all the time. I don't want to bother friends and family as they will worry especially as they can't visit so I just brightly tell them "I'm good" and change the subject if they message.

I'm not usually like this and take everything in my stride. I'm not sure if having Covid had left me a more anxious person at the moment. It's like my brain is struggling to function properly! 

is there anyone here who could tell me what to expect for dcis surgery, what happens after, how long will I need off work, will I be able to do things after op or is it rest and if so, how long before feel ok again, what will the scarring be like, is there anything I should avoid doing or anything I should do before/after, how long does the op take, does it hurt, any hints and tips?

 I know everyone here is going through worse but I feel like I'm going under or maybe I just need a hug x

Parents
  • [@JulesW]‍ 

    Welcome to the site no one wants to join. I only joined recently and everyone is very friendly.

    I was diagnosed with breast cancer in December after a mammogram. I had left breast ductal cancer. Grade 2. 5mm lump. Ostrogen and progesterone both positive. Her2 negative. I had a wide local excision and sentinel node biopsy. Went in 29th December at 7am home at 3pm. I have 2 scars, one on my boob and the other is under my armpit both are about 4inches long. On coming out I had 2 dressings which I took off after 6 days with advice from my breast care nurse. Started my excercises the next day gently at first. I found under the armpit the most uncomfortable, I used a soft sock tucked underneath trapped by my bra straps. You will be given stockings to wear for 2 weeks after the operation. Take any painkillers that you need. I was very tired and weepy for a few days after my operation. 

    The magaseed was put in the week before. Bloods were taken on Christmas Eve and I had a covid test on Boxing Day. 

    Unfortunately when I was given the results my lump was actually 15mm, removed 2 lymph nodes. Now I am having another operation on Tuesday 26th January this is to scrape all the pre cancerous cells and remove more lymph nodes. (DSIC) I had a covid test yesterday.

    Everyone is different in how they deal with cancer, I'm the type of person who has told nearly everyone. My husband is my rock. Fortunately he has isolated with me. That was hard when he couldn't come to most appointments but was able to come in for the results.

    I have cried and moaned a lot over the past few weeks, but also laughed with others.

    You don't have to be strong, you can have wobbles. 

    Phone your Breast care nurse for more information as that's what they are there for.

    Good luck with your operation.

    Litchielou x

  • [@Litchielou]‍ 


    Thank you for replying and for all the information.

    It's good to have an idea what to expect and to hear there are exercises to do afterwards.
    I have a lot to learn and felt I had no one to ask. I didn't want to call the breast nurses as could see how busy and stressed they are. I know they need their time to help people in much worse situations. 
    We have a lovely but energetic dog so been told my husband can't isolate with me as has to go out to walk the dog. Also two sons so trying to be "brave" for them. Very strange times when this leaves us in separate rooms. I guess I'm usually very busy, now have too much time to think and am missing them all.
    I'm surprised how lonely I feel and know it's my own fault because I have told my friends and family what is happening and they are all amazed how positive and unphased I am! It seems I'm very good at hiding how I feel.

    It sounds like you are really going through it. Thank you for sharing details about your journey with me. It's very kind of you and has really helped.

    Best wishes for your op tomorrow and for recovery afterwards.
    Thank you so much for replying

    Jules x
     

  • [@JulesW]‍ 

    At first I put on a brave face but now with certain people I have let them know how scared I am. I've also started to write down everything I'm going through. As something's I'm forgetting.

    The information can overwhelme me occasionally. Also write down any questions you might have for the team that's looking after you. Have you had your pre op yet. I was able to ask a few questions there.

    Another little bit of information wear a front fastening top on the day of op and loose trousers. Not like me I wore tight jeggings and the nurse had difficulty helping me put them on because of the stockings.

    Come back anytime and chat if you want. Please phone your nurse that's not your fault they are busy. You are just as important as anyone else.

    Take care

    Litchielou x

  • [@Litchielou]‍ 

    Thanks for the advice. I had my pre op assessment on 14/01. The nurse was very stressed and offloaded her difficulties and the doctor not available as he had Covid so I came out with more questions than answers. I understand things are very stressed and stretched for them all especially at the moment so didn't want to bother them but took your advice and called the nurse today.
    Thank you, of course the nurse was lovely. Feel daft for not doing it earlier! She said no Covid test before op as I've had Covid within last 90 days. (Thankfully recovered as it was horrible). She also said both procedures will be done on 2nd instead of over two days which is a relief.
    I also had a (distanced) chat with my husband. He'd realised I was struggling but was at a loss at what he could do. I guess it's tricky for them too. 

    Thank you so much for your replies. You have helped me more than you will ever know.

    Good luck with your op tomorrow. Hope all goes well. If you think of it and get a chance, let me know how you get on. I'll be thinking of you x

Reply
  • [@Litchielou]‍ 

    Thanks for the advice. I had my pre op assessment on 14/01. The nurse was very stressed and offloaded her difficulties and the doctor not available as he had Covid so I came out with more questions than answers. I understand things are very stressed and stretched for them all especially at the moment so didn't want to bother them but took your advice and called the nurse today.
    Thank you, of course the nurse was lovely. Feel daft for not doing it earlier! She said no Covid test before op as I've had Covid within last 90 days. (Thankfully recovered as it was horrible). She also said both procedures will be done on 2nd instead of over two days which is a relief.
    I also had a (distanced) chat with my husband. He'd realised I was struggling but was at a loss at what he could do. I guess it's tricky for them too. 

    Thank you so much for your replies. You have helped me more than you will ever know.

    Good luck with your op tomorrow. Hope all goes well. If you think of it and get a chance, let me know how you get on. I'll be thinking of you x

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