Delay in starting treatment

Sending lots of cyber hugs to cheer you up. It does seem an eternity but the delays are not so long in real terms and after surgery chemo is prevention of the cells returning so the gap is less significant. I hope the reincision for the clear margins goes smoothly.

Karen

Thanks very much for your kind words, Karen

I do know that I should concentrate on the fact that my consultant assured me that all cancer has definitely been removed and I have said all along that all further treatment is 'belt and braces' or insurance for the future. As I have node involvement I know that the chance of there being stray cells somewhere is greatly increased and I think my mind is working overtime on worrying that they are doing their worst whilst going through all this waiting. 

I am also absolutely terrified of chemo and having to manage the additional isolation due to Covid is very worrying, so I think this is all preying on my mind. Finding it difficult to get on with much at the moment.

Hi PatsyP2 I'm just sending you cyber hugs really. It sounds like you have a similar diagnosis to me. I was diagnosed in July 19. I remember also being really anxious about the gap in between surgery and chemo because, like you, I had to go for a second surgery after I got the results of the first operation. I was very conscious about the fact that the start of chemo would then be delayed and I remember worrying like crazy about it. Try not to get overly anxious about it. I was told that they like to give you at least 6 or 7 weeks (minimum) after surgery for the body to recover enough for it then to be hit with the chemotherapy. It helped me to think that my body needed to get strong enough for chemotherapy to start and to continue once started. I focussed on trying to 'enjoy' the gap. This is easier said than done, especially during the pandemic. You could maybe call your BCN to discuss your worries, you never know, sometimes that can prompt them to just look up your details and check that everything is on schedule? I remember doing this and it did reassure me and give me chance to air my concerns, so I felt I was doing everything possible - and the rest, I had to leave to them. Sending strength, hang in there, you can do this. I hope you can re-find your positivity. xx

Hi PictureThis2. Thank you for taking the time to reply and for your good wishes. I do know that many people have been in a similar situation to me and I was assured by my consultant that there was no problem with the timescale I am looking at. I took that on board at first but my worry has increased as time has gone on. 
Like you I was determined to ‘enjoy the gap’ and get on with other things and this worked well initially. Am hopeful that I can recover some of that determination and positivity in the next few days. 
As suggested I probably will have another chat with my BCN. So far she has been very supportive

Thanks again

Hello PatsyP2,  

I am so sorry you are having to go through all this - the waiting is part of the hardest time..... when all along you just want to get on and get it all over with.  We living in some strange times, I am waiting for overdue mammogram - yet am scared to have it - due to risks at going to hospital, etc. 

I wonder, could you be prescribed Letrozole or Tamoxifen whilst you are waiting for your treatment.  

Originally, I was put onto Letrzole whilst waiting for my lumpectomy - whilst waiting it actually shrunk 'it' too.

Just a thought and you may feel more at ease - it's worth asking the question.

Sending gently hugs to you xxx

Hi WhatHappened

Thank you so much for your reply. Yes we definitely do just want to get on with it - my view is however bad the treaty is going to be, the sooner it is started, the sooner it is finished. 
I had wondered about hormone treatment whilst waiting. I have certainly seen that a few people have been treated in this way, especially during the delays of COVID. As I am now only a few days away from my op I probably can’t gain anything right now but I will raise my concerns again with my surgeon and push for at least an urgent oncology appointment. 

Dear PatsyP2,

In my humble opinion,how you are feeling is completely justified. It makes sense that you wouldn't be jumping up and down with positivity. There's such a burden on us to feel positive, and at times this is possible, but it's a sh*tty, long, stressful treatment. Please don't put extra pressure on yourself to feel positive or 'up' if that's just not how you feel. You feel how you feel - this doesn't make you wrong, bad or less, it just makes you human, and a human going through a monumentally stressful time. Take each day as it comes, and if you feel you need to just get through the days, then that's where you're at.

To not be motivated... most people I know are completely de-motivated by the pandemic and they're not going through cancer treatment. Just getting out of bed and showering should be applauded, let alone managing anything else.

Waiting for results is at times more stressful, because while everyone around you can say "you'll be fine", or "I'm sure it will be good news", you're the only one going through it, the only one affected, the only one having to weigh up the what ifs.

So... be 'down' if that's what you need to be. I'm sitting right there with you in that. I salute your vent, and keep venting if that's what you need. Wishing you all the absolute best

Hi FR20

Everything that you say is totally correct. We do have to cut ourselves some slack, go with the flow and get through each day as well and in whatever way we can. Like all of us I have bad and slightly better days but I have got to the point where I am in effect functioning on the most basic level only  This is despite assuring my family that I am 'ok'. And whilst many will say that I should let them know how I am feeling I really don't think I can handle that myself - seeing them more worried and upset would do me no good at all.

I have also realised that I am in effect grieving for the loss of the life that I had and this, like any grief, will take its own time. I have no idea what any future life will look like and am not even thinking about that - just getting through each day of the current nightmare is enough and I certainly know that anything I am lucky enough to have in the future will not be rosy. I am sure that, like everyone, I will eventually come to terms with this but in the meantime I will try to hang on in here and get through this terrible period.

Thank you for your kind words and good wishes and wishing all the best back to you.

Hi PatsyP2,

I feel like I'm reading my own post. Currently going through radiotherapy, final phase of treatment and have reached peak patience. I can't currently tell family/friends I'm ok, because I'm just not right now, meaning I'm avoiding everyone (I live alone) as I don't need the peripheral worry engulfing mine, nor do I need to compound my own worry with theirs. It's difficult, and so if it makes any difference to you, it seems we're navigating similar territory.

What to do about feeling as you do? It's a hard one to answer, but slapping a smile on for me doesn't do it, it just holds off the inevitable. As for what does, for me on those darker days it literally means using up the day / counting the day down. It can be difficult to wake up with 'big' emotions every day, but I hold onto the fact that they do eventually burn themselves out.

If it's useful for you to direct message me, please do (no idea how to)

Hi everyone and thanks again for taking the time to respond to my venting. We all know how difficult this rollercoaster can be and that the waiting and delays are the worst parts and it is really good to have the support of you lovely guys on here when times are tough. I have been feeling more like my normal self today - not 'up and at 'em' but at least able to do more than put one foot in front of the other. I was intending to take your advice PictureThis2 and call my BCN but in the end I called my consultant's secretary, asking her to pass on my concerns about the potential consequences of the delays. As a result the consultant called me and we had a fairly long chat which has helped to put my mind at ease somewhat. He has also confirmed that he will speak to the oncologist and ensure that an appointment can be arranged for immediately after the results. Hopefully this may enable me to get through the next couple of weeks in a calmer frame of mind.

Thanks again and good wishes to all of you.