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Topic After cancer treatment

Finished treatment? Trying to find a new normal or perhaps feeling a bit lost and anxious - share experiences and practical tips with other members and the online team.

  • 42 conversations

One year on and the 'new normal'

Started by Anonymous on 22 August 2016 at 16:03

I m just writing to offload a bit and try and make sense of the big emotional dip I m finding myself in. It's 1 year this week since I was diagnosed with invasive breast cancer. I was fortunate to avoid chemo but am struggling with tamoxifen side effects and have lympodoema of my chest wall, arm and hand. I guess the hard bit is the realisation this might be my new normal for the ten years I have to take tamoxifen, a life time of lympodoema management and the usual fears about it coming back. It's hard to talk about with those who ve never been there themselves and who just assume life must be back to my old normal by now. So I m just posting to reassure myself I m not on my own and to get tips from about how best to move on

Comments (5)

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Displaying 5 comments

  • From Anonymous
    06 September 2016 at 13:43

    Thanks for all the supportive comments; they ve been really helpful. I seem to be coming out the other side of the 1year anniversary mood dip which is a relief, and have found the book recommended by Sue very useful. I ve had my first session of CBT which I think is going to be very useful, and have enrolled on the next Where Now online course. Unfortunately I don t have a good support group I can access. I live in a very remote, rural area and all the ladies there were significantly older than me so understandably the group was more geared to them.I didn't find it that welcoming unfortunately so won't be going back for now while I prioritise my energy levels! I also have a place booked on a breast cancer care 2 day course for younger women with breast cancer which I m very much looking forward to. So I feel things are looking up a bit, and I m more able to recognise that it's no good expecting my old life to just return like nothing ever happened, and also how to at least take the first steps trying to embrace the new life! Thanks again for the support


  • From Anonymous
    06 September 2016 at 12:20

    Hi Clump, 

    I agree with BellasGirl, you are definitely not alone.

    I finished my treatment 2 years ago and am still struggling to find my 'new normal'. I have reduced my working hours as I was struggling to cope and this has helped a lot but has brought it's own financial issues.

    Cancer changes everything and, unless they have been through it themselves, it's impossible for other people to understand the invisible scars it leaves behind.

    Others don't understand why you can't just work a few more hours (when you can only just cope with what you are doing) or just come out for an hour (when you don't feel up to leaving the house). They want you to be the same person you used to be because in their eyes this means that you are 'better' but they don't realise it's not as simple as that. It's because they care and they want everything to be OK for you but it actually puts extra pressure on you because you feel like you need to 'get better' just to keep them happy.

    I have found that getting support from the right people is so important.

    As well as counselling and CBT I have also received support in lots of other ways. Maggies online is great because, if I am up in the middle of the night and need someone to talk to, I can put all my feelings down in a message to someone (normally Sue draws the short straw!) I know I won't get an instant response but it helps me to get my feelings off my chest and I know I will get a supportive reply the next day.

    In addition I have also used my local Maggies Centre a lot. I know I can just drop in there any time they are open and there will be someone who I can have a chat with about anything.

    I don't know if there are any support groups in your area but, if there are, I would recommend you give them a try. My local breast cancer support group is great and, even though I don't go every month, it's a good place to get to know other people where you can talk about things if you want or just have a cup of tea in a friendly and supportive environment. It's not just for people who are receiving treatment now, some of the ladies have been going to the group for years.

    I would definitely recommend the Maggies 'where now' course. I did one at my local Maggies 2 years ago just after my treatment finished. As well as finding the course really helpful and informative, I got to meet a lovely group of ladies and we have met up a few times since the course too.

    The Macmillan helpline is also really good both for practical advice and for emotional support. In fact I called them yesterday just for some information and ended up in tears on the phone talking about my feelings. After the call I felt so much better to have got things off my chest that I had obviously been bottling up inside.

    The main thing to remember is that you are an individual who has been through an enormous ordeal. Be kind to yourself and don't feel guilty about accepting help or putting yourself first.

    Feel free to message me any time. I can't always reply straight away but will do as soon as I am able.

    Lorna xx

     

     

     


  • Picture of Tombenefits
    From Tombenefits  
    23 August 2016 at 14:34

    Hello,

    Would be great if others can join in with more direct experience.

    I certainly get that impression that it is very common to have that real sense of loss for the "old you" and quite some time to accept, adjust and find positives within the "new normal". At the same time, the impact of just what you've been through since diagnosis is finally having a chance to come out, in quieter times now the hurly burly and frequent medical contact of earlier times has quietened down. 

    Ongoing "late effects" from past treatments are still around while tamoxifen brings its side effects. It may be nothing like as as intense as during chemo but they are still limiting your daily life. Friends and family can find it harder to understand; it's can feel that as well as thankfully becoming a little less pale, you may at the same time  become a little less interesting :-)

    Meanwhile you may being too hard on yourself, for feeling as you do. After says your "pull yourself together" voice, you have come through times which felt in many ways much worse. But that doesn't help you to allow yourself to accept that you could do with support, let alone go and seek it out, adding to a lonely sense of just having to put up with it :-(

    But you are not alone! And hard though it can be, it's great that you have reached out here, and I hope many others will join in this conversation or come together in support groups within this and other Centres. This too is a hard and difficult time on the journey; and this too will pass.

    And it's a bit like that with benefits. In people's Plan As, these were handy when you needed them - in that hard treatment year, - but "back to normal" included wishing them a fond farewell as you returned to past lives, which may have included back to work.

    But regardless of whether you are now off work, easing back into it in part time or even have made it back to full time work, there are still benefits that can help with the extra costs and difficulties you now face.

    So, for example, wherever you stand in relation to work now - including having retired from it - the "disability benefits" - such as Personal Independence Payment (PIP) or Attendance Allowance can still apply. The DWP gave a case study of someone 5 years after diagnosis who while getting to grips with her new normal, still qualified for PIP. 

    Sue wrote an excellent blog around some of those long term effects, available here . I followed this up with some blogs around the benefits aspects availabe here.

    Benefits of course wont make a diddley squat of difference to the physical and emotional impacts of which you write . However, they can help open up more options and choices as you develop that new normal, and so can play their part in the support you need.

    If you - or any other gentle readers - would like to have a chat around benefits, then  do feel free to message me at any time :-). But I would also encourage others who have actually been on this journey - and so who know whereof they speak - to join this conversation too :-)

    Best wishes,

    Tom :-)


  • Picture of SusieQ
    From SusieQ  
    23 August 2016 at 10:41
    Edited on: 23 August 2016 at 11:28

    Hello,

    You've raised a good point here - which many family and friends don't realise - that cancer changes our sense of 'normal'. Whilst everyone around, may be leaping with joy that your treatment is finished, it's just at the point where you may have had a reality check.

    It's well recognised that there may be a psychological dip during the first weeks and months post treatment - and another dip often occurs around the anniversary of diagnosis and treatment starting ( a reminder of what you've been through over the last year).

    It's logical in a way - you've been through a life changing experience, where your body and mind have been hit with cancer treatments, hospital appointments, serious conversations, and hormonal challenges. Added to that, living with the long term effects of treatment, such a lymphoedema, serves as a reminder of what you've been through.

    As Bellasgirl says, you need time to grieve for the old 'you'. You then may need to find ways to manage uncertainty, and perhaps you've had a temporary loss of confidence and self esteem. Maggie's Centres recognise this is a key stage of recovery, and run a course 'Where now?' to help address the issues and take control back. Here online, we will be running a version of this in the Autumn (for details of all our groups and work shops, simply click here).

    There's a good book which is worth a read - The Cancer Survivor's Companion (2013) by Lucy Atkins and Frances Goodhart, which covers everything you raised in your conversation post - and may help you feel less alone in all this...

    You're also very welcome to message Robyn or myself to talk anything through...

    Warm wishes

    Sue

     


  • From Anonymous
    22 August 2016 at 16:37

    Hi Clump, not sure I can offer you too much advice. But can definitely tell you, you are not on your own. I too was left with Lymphoedema and HATED every second I was on Tamoxifen. Although I found one brand suited me more than others! I took it for 18months! I too was surrounded by friends and family who assumed I was back to my normal self, and it took me months to realise the reason I was feeling so low. I was grieving my old life. The life where I didn't have health concerns, the life where I could do what I wanted, plan ahead, just not worry about things. The Breast Cancer changed that, and no one around me understood how I was feeling. Nobody can understand the ups and downs of all this, unless they have been through it. Just give yourself time, allow yourself to grieve the old you. You'll find the new you and you'll get used to the new you, it just takes time! In the meantime I hope you can at least feel, YOU ARE NOT ALONE! Xxx


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