Having a wobble

Hi Ladies

I have my appointment on Tuesday to get results of my end of treatment scan. Based on feedback from the surgeons and the medical team I've already been told that I'll be in the best possible position that I could be in (which I assume is no evidence of disease). So I'm expecting good news but am having a major wobble - everyone talks about fighting cancer but I've sat back and let the medical teams get on with what they need to do and all I've had to do is deal with the side effects. It feels quite scary that I will most likely be signed off on Tuesday (subject to 3 monthly checks) and discharged to return to the real world. I know I should be celebrating but I'm feeling quite anxious about leaving this bubble behind, at least for now.

Has anyone felt like this?

Andrea x

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  • Oh Andrea, I so very much understand all that you are feeling. I had the same wobble 1 month ago waiting for scan results of first line..... it was NED, but boy did I get myself in a right state.

    Then I thought, ok so now what?! It's like being cut adrift after the months of surgery and chemo. I think everyone feels this way, it very natural. I think it's about finding a new normal. If you want to pm me please do anytime... I completely understand.

    Marian xx

  • Thanks Marian. Glad to hear you are NED and I hope you're recovering from treatment.

    I do have a "normal list" which I wrote some time around cycle 4 just to remind myself about all of the things I did before treatment, things like going to work (which I enjoy!). It just feels quite scary going back to it all now and leaving this behind when I haven't quite dealt with it.

    I also suffered from depression a few years ago and had to work hard to rebuild my life after that so it feels hard to be going through that again.

    I hope you're finding your new normal:)

    Andrea

  • I was just the same, I was NED so only had appointments monthly then three monthly and now 6 monthly, it's very strange at first but you will get used to it, honest 😊. Good luck with your results and well done on finishing your treatment ❤️Xx Jane

  • Thanks Jane. Good to hear you're NED and by the sound of it still doing well. I hope to feel better when I'm on the other side of my sign off appointment:)

  • Hi Andrea,

    I fully understand how you are feeling, life after the first line of treatment is a daunting prospect as everything has changed from how it was before diagnosis. There are some situations in life over which we have little or no control, so I have tried to work on areas that I can control i.e. my attitude towards my condition, my diet and trying to keep physically as fit as I am able. I have found a local cancer drop in centre, which is great to meet up with people in the same situation. I take full advantage of the complimentary therapies and any help that is offered, e.g advice on finances. We are all very different but try and find out as much as you can about Macmillan or other services/groups in your area. It helps to know that you are not alone. This forum is also a good way of keeping in touch. I hope your meeting goes well with your oncologist, if you have a nurse specialist ask for any information they may have, they should also be available if you have any queries after the treatment period. Allow yourself a wobble, we all need to let out our emotions and deal with our anxieties.

    Sending best wishes Jane.

  • Thanks Jane. On the whole I've managed to stay positive about my situation and have chosen to accept what's happening rather than fight it so I've felt really calm but I have been really lucky that other than a horrible allergy to paclitaxel my treatment has been straightforward.

    I've been using a local support centre but only found this just before my surgery so maybe haven't used it as much as I would have. I've also only just found out that they continue to support afer treatment so I'll have to make sure I make time around work to still use them:)

    I hope your treatment is going well.

  • That's exactly how I felt, esp the day I had my last chemo........this feeling of being adrift, on your own. But we are NOT because we all have each other on here, the very best support ever! Good luck! x

  • Thank you triplets and it's good to hear from all of you that this is normal xx

  • Yes absolutely! I did the Hope course when I finished chemo...it's been designed by Macmillan to support people finishing their treatment..maybe ask locally about it?

    Well done though...don't underestimate what you've been through-there are so many ways we fight- just turning up for treatment takes its toll xxL

  • Thanks Lyndy. I'll have a look for the Hope course and I've heard about Penny Brohn courses but not been able to attend any locally x

  • Hi Andrea

    Very well done on getting though this grueling treatment.

    How you are feeling is entirely normal. Anticlimax after huge life changes is very very common....there is lots of research to show this.

    As for the fighting / positivity analogy , well anybody who has lived with a dog will know how positive they are about life , how they put unhappy stuff behind them the second a treat appears. But dogs get cancer too ! As I'm sure you know ther is evidence that increasing physical activity does improve survival.

    Sorry about the disjointed reply.

    Wishing you the very best xxx

  • Thanks Charlie12. One of the things on my "normal list" is to start walking more and I've got something arranged with a friend.

  • Completely - felt like this after my first time in 2015 and had a wobble every time I went for a check up. I've just finished treatment for a recurrence and haven't had my scan yet. Due to bowel surgery I had to have half way through I know that there was NED but I'm still winding myself up with scenarios of what if it started to grow back again?! The biggest fear is what if it comes back? Mine did and I've coped again now hoping for a longer remission than last time. My nurses are great and I can talk to them between the 3 month check ups if I need to and this site is great for when we are having those wobbles!

    Wishing you all the best.

    Becky

  • Hi Becky

    Sorry to hear you've had a recurrence but I know that's common with this disease. I'm trying not to think about that but it definitely adds to the uncertainty when I think about getting back to normal life. It feels hard to plan or commit but I guess we just have to assume that all will be well don't we.

    Andrea

  • YES !!! It's all so intense that being without is a wrench. A bit like leaving a job you hate but it still takes a while to settle down somewhere else. Take your time. Decide what you want to do and do it.

  • Thanks Lesley. Everyone at my hospital has been amazing and one of the difficult things is saying goodbye. And you're right I know I just need to get on with life but it feels hard to commit to things at work as I'm worried about letting everyone down if I'm off sick again....but hopefully that won't be anytime soon x

  • Nobody can predict when they will be off work sick. You'll have more warning than most. But I know what you mean about letting people down. I had to drop out of several roles and it is hard finding things to replace them. But I guess that was because it was around retirement time for me.

  • YES YES YES! I'm only 6 weeks into this phase and still dealing with some issues, so not fully out of the woods yet. (But clear scans thankfully!) But, know exactly how you feel. I was given an article called "after the treatment- now what". Written by Dr Harvey Cloud. You can google it. It was so helpful to validate the feelings, and map out how to navigate your way through the post treatment stage of recovery. This is when healing can finally start to happen. I also asked my immediate family to read it as well. I hope this helps you as much as it did me.

    I'm also planning to see an oncology therapist, which I understand is also very common. My goal there is to learn how to cope with the fear and anxiety.

    But the article will likely help you understand what your feeling and how to navigate in a way that is slow and comforting.

    And congratulations on making it through!

    Best,

    Anne 🌺🌼🌸

  • Hi Anne - thanks for recommending the "after the treatment" article which explains things in a lot more detail than some of the other leaflets I've picked up. Hope you're doing OK. Andrea x

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