Time feels like it’s standing still

Hi, this waiting for first Oncology appointment feels like it’s never going to happen, everything seemed so straight forward before I got my results. Lumpectomy and sentinel lymph node removal, radiotherapy and tablets for 5 yrs… now I’ve been told samples have been sent for oncotype test so have to wait to see if chemotherapy may help as cells discovered in one of the lymph nodes. I really want to get back to normality, keep having meltdowns when alone. Everyone keep saying you’re strong, and I want to scream I’m not but instead say yes I know Missing my work and just hate the fact that can’t plan anything  until I know what’s happening. So many good shows on at the moment but can’t book any, or make any holiday plans. Hopefully will hear next  week, then maybe everything will fall into place.
sending you all love and hugs

  • Hi lilacmoon

    Everything you have said in this, is me saying the same 

    It is very much a waiting game, and yes nobody knows the struggle you keep inside. They think your strong because in the past you have dealt with stuff and they see you coping. 

    They don't know that this is the biggest most scariest thing your ever have to deal with. I'm finding it's fine to rant and be selfish. 

    Lean on your family or your close friends. The friends that make life normal not who just talk about cancer or avoid you all together but then send a polite message saying take care keep in touch. 

    I to miss work and planning ahead so my day now consists of daytime TV and  trying not to eat to much because its there and I can. 

    Waiting for telephone or post for appointments 

    I had a ct scan yesterday because I have 2 lymph nodes that were cancer.

    I to thought get the lumpectomy and not expecting axillary clearance but hey this happened. Now I have oncology on the 20th April had letter through yesterday. So just have to wait I'm thinking radiotherapy and hormone therapy I really don't want chemo. But it's waiting for that test. More waiting.....

    It's going to be tough hun but we are all with you

    Keep messaging keep telling us how you feel I know I'm a stranger but I'm listening.

    M

    X

  • Hi M, glad you’ve got you’re appointment, as least you’ll get a treatment plan now.When did you have your surgery. I had mine on 19th March 2022 I’m hoping for no chemo too.  Can’t believe how much my life has changed in 8 weeks

    take care and talk soon x

  • 9th March hun so no long for you now 

    I think it's just a chat with oncology it's still a wait as they then send it off for testing etc then they come up with plan. I've tried to use a site on the NHS called predict. But it's not a conclusive plan it's a suggest this going forward? 

    M

    X

  • I’m not too far behind you, hopefully the results will be back and I’ll hear next week. 
    take care, speak soon xx

  • Hi Lilacmoon, 

    I hear you, I take the dog out and shout into the wind. We had some nasty surprises post my op, so waiting for my game plan on what next with chemo, more surgery etc.

    It is hard and painful and so disruptive. Hard to find normal currently. For me, I’m trying to do something “normal” each day but only plan a day in advance. Grab a cup of coffee somewhere, meet a friend for lunch. hair cut. Really simple things. I’m very fortunate that work have said I can dip in and out as I please. So if I need a day doing something I can. But it all feels a like this is happening to someone else and I’m watching it. 

    Big hugs x

  • Hi Mimsy,

    hope you get your plan soon, it’s this waiting and not knowing that gets to you isn’t it. As others have said on here, they felt much better when they knew what was going to be happening. I’m sure that will be us too. My phone is like it’s glued to me, waiting for it to ping with an appointment or a phone call. I was fine when they said radiotherapy and tablets for 5 yrs, but since they said maybe chemo it’s really got to me. But i will deal with it if needs be. 
    fingers crossed we hear soon

    take care xx

  • It’s really scary. We initially thought surgery, radiotherapy then tablets, but they found the lymph glands were infected too. So potential new plan is chemo, more surgery, then radiotherapy and tablets. But need the oncologist appointment to give me a proper plan. 

    im quite worried about the tablets bit. I’m 39 and what  I’ve read about the side effects, I’m worried. 

    I am hoping we get some clarity soon. Being in limbo or not having the facts does but suit me at all xxx

  • Hi, yes this limbo malarkey does not suit me either, I have always liked to know exactly what’s going on and what I’m doing. The Surgeon told me to wait 7-10 days and contact the BCN’s as they will know what is happening. 10 days is up next Wednesday,  I really hope I hear soon as hate making contacting, feel like a nuisance.
    Take care xx

  • Hi - I have been so similar to you and have exactly the same thoughts. I was on your original path however with cancer in 1 lymph node, now on 8 cycles of chemo. I’d hope to avoid it but it’s manageable and now of opinion let’s fling everything at it now and that’s it hopefully gone forever.I think it’s as Covid lifting and everyone’s lives are getting back to some normality and ours are still in limbo, I just want to plan things to have something to look forward to but are limited at moment whilst on chemo due to risk of infection. It’s so hard when everyone says your the strongest person I know, you got this when ultimately that’s a load of crap, so you can only take 1 day at a time and do what’s right for you xx