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Picture of Topic  'Today I am feeling' - managing emotions

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Topic 'Today I am feeling' - managing emotions

Share how you are feeling and swap tips for managing stress with other members and the online team

  • 186 conversations

Feeling sorry for myself!

Started by Anonymous on 19 June 2015 at 11:49

Diagnosed with secondary bone cancer a couple of weeks ago. Primary breast cancer 2012. This round began with an unexplained fractured spine so I have been in bed for weeks now. I've had radiotherapy to help shrink the tumours and hopefully reduce pain. But I'm still hobbling around like a 70 year old (I'm 50). I feel like I've become disabled overnight and that if this is as good as it gets, then kill me now! I guess I am in denial. I have 2 boys, 11 and 7 and my heart breaks for them. I'm using my bed as a co coo and as an excuse. Not sure what to do with myself. Want to start living but not sure how to stay motivated. Sue

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  • Picture of Tombenefits
    From Tombenefits  
    23 June 2015 at 14:58
    Edited on: 23 June 2015 at 15:26

    Hello,

    I'm Tom the Online Benefit Adviser - with a few thoughts on things benefits.

    I can imagine the turmoil as everything feels back up in the air and out of control, as you adapt to the news  and its implications. It's a huge crashing of gears as you move from the hopes that saw you through the first round to finding new - and very real if more constrained - hopes as you reach towards a new normal.

    It takes a while for it all to sink in and to accept it, with so much information and emotions rushing through your head.  But even now, your wisdom and sense comes shining through, as you engage in the weird business of maki preparations for what may still be some way off.

    There will be days when you will just want to rail against it or wonder if there is any point, others happier easier days when there can be some burningly intense linings to the clouds. Planning and making arrangements can be a way of regaining a sense of control and acceptance.  

    And just as it will have hit you hard, so your partner and children and you will all be worrying about how each other is coping - so it's great that you keep talking. But just as in time you adapt so will they, once you get over that dancing on eggshells around each other, and you will be sources of strength for each other as well as worry :-) 

    i recognise the qualms about crossing the hospice threshold and all its associations. But we were certainly glad that we did.

    Hospices can be a centre for hope and support in celebrating life too, whether as a day visitor or even for a bit of a respite stay. It may also be where some very useful specialist therapeutic expertise hangs out, such as the pain management, physio and other support. 

    What you don't need is financial hassle in this time.

    I offer some general thoughts here on benefits, but I will message you separately to offer private and confidential advice as and when you may want any. You may already have benefits in place from before, but they may need looking at again.

    Some benefits are related to your health, and in your new circumstances the DWP can be persuaded to lay off their  inexorable drift to complexity, medicalised assessments and conditionality, in either awarding these if you haven't claimed or possibly increasing them if you have

    In particulary this can free up Employment and Support Allowance (ESA) (as a basic income for being too unwell to work) and Personal Independence Payment (PIP) (to help with extra costs of daily living and getting around).

    Big bureaucracies like clear guidelines and the DWP have a rather innacurate (in terms of the law) and unecessarily stark  rule of thumb", as to when they can relax their normal assessment rules. That in turn may constrain medical teams understanding of when they can issue the certificates to get you through.

    For PIP, for example I would focus on the three years such an award will be made for and on then renewing it :-)

    For your partner, Carer's Allowance gives an income without the added stresses of jumping through hoops and over hurdles that are required of say a jobseeker, even when the JobCentre do make allowances for caring commitments.

    And for both of you, there are joint claims to check - on low income grounds - for help with to top up your basic benefits, cover the children and help with other costs such as rent, mortgage interest, council tax and health costs.

    Happy to chat with you around all this in private as and when you would want  to. Or with your partner if you feel like delegating :-).

    And for either of you to message me at any time. Feel free to fire off a nagging worry in the middle of the night and get some sleep, but don't expect an instant answer :-)

    It may be that for now, you have enough to get your heads round, so don't feel pressured to take me up on the offer :-). It's an open one for now and right through the journey ahead.

    Best wishes

    Tom

    Online Centre Benefits Advisor


  • Picture of SusieQ
    From SusieQ  
    22 June 2015 at 10:31
    Edited on: 22 June 2015 at 10:32

    Hello Sue,

    You have dealt maturely and openly with what has been a very frightening time over the last few weeks - and it can feel quite strange having prepared everyone for an event which still may be some time away.

    You may all feel in limbo just now - knowing that you've had to have life changing conversations with the children, family and friends, yet not knowing quite what the future holds, or when...

    This new phase of your life, will take time to restructure - new routines, and patterns will emerge. The boys will probably be feeling unsettled for a while, but as they realise that what you've talked about seems not to be happening 'right now' - then the 'new', may become the 'familiar', and things may settle down. With them fully in the picture, then if and when changes occur, you can keep them included - recognising that they may only be able to deal with so much information, and need security, routine, and a sense of love and normality...

    Starting the memory boxes early, means good things can still happen, and be added to the 'box' - photos, letters, drawings, objects which mean alot to them from you - although this can feel painful and poignant to do. Another online member said his wife completed a journal - something like 'Dear Mum, from You to me', which gave her something to focus on for her family.

    Treatment wise, they all sound appropriate without being too intrusive. The steroids I mentioned is sometimes given if the bone problems had been causing problems with the spinal cord - and is given whilst waiting to have the radiotherapy. It sounds as though, in your case, it was the fractures themselves causing the pain and immobility.

    You mentioned your anxieties and reluctance about contacting the hospice. It can all feel very final...but I imagine it's simply the base for the specialist nurses...and hospices provide support from early on in a cancer process, when the cancer isn't going away. The benefits for you could be access to a number of 'out patient' type facilities, for you all as a family.

    The parameters for 'hope' have changed, but you and the family may have some quality time still ahead, and now the focus may be on living, and finding the new 'normal' for you all,

    Please dont hesitate to message me, and we can talk things through some more...

    Warm wishes

    Sue

     


  • From Anonymous
    19 June 2015 at 18:21

    Dear Sue, Thank you for taking the time to reply to my post. I do gave a partner who has been absolutely wonderful during this time and the original breast cancer a couple of years ago. He is not working so can do the school run, cook,etc, but he is running on empty and I'm worried about him. My boys have been told that the cancer is back and that the doctors can't fix it. We told them a couple of weeks ago. They both asked if I was going to die and I said yes eventually, but that it wasn't going to happen immediately. We then had a discussion about nobody really knowing how long they have to live. I'm glad we were honest with them, particularly as Ai work at their school and it would be awful for my colleagues to know and them not. My youngest son has been a bit more clingy and my oldest one a little more distant, but we still have cuddles and hugs and little chats about nothing in particular. They know they can talk to us, the school counsellors, friends, anyone, if they need to. I guess it's a process for them as well as Nik(my partner) and I. As far as treatment goes as far as I'm aware the radiotherapy's finished for now, I'll have bone strengthening infusions on a monthly basis and they've switched tamoxifen for something else. Pain management is paracetamol and morphine. You mentioned possible steroids- which I haven't been prescribed - can I ask what they'd be for? No chemo for now as it has not spread to anywhere else. One big hurdle for me is contacting St Chrisopher's Hospice. I understand that they can help with day to day living but for me - as I am sure must be the case for others- St Christopher's =death. I know there is still part of me in denial and that this is part of a process, but it scares me to death, if you'll pardon the pun. I know that I could live for years, but I can't seem to find the light. I've got a "to do" list that includes memory boxes for the boys, A "me before you" book for them, funeral thing and the like but I can't face getting on with any of it, it's too painful and scary. Sorry this is such a long message- I didn't realise I had so much to say..... Sue


  • Picture of SusieQ
    From SusieQ  
    19 June 2015 at 13:23
    Edited on: 19 June 2015 at 14:31

    Hello Sue (from another Sue),

    You've had a lot of time, with pain and immobility, to be faced with many big questions, and 'what if's'. A diagnosis of secondary cancer, can sometimes feel even more scary than the original...and that may have tipped your world upside down.

    It has been necessary for you to rest, to protect your spine, but I'm imagining now you've had the radiotherapy, the aim will be to get you gradually up and about. The first days and weeks can be demoralising, as you'll have lost muscle strength, with the bed rest, and possibly steroids initially?

    Motivation at this point is understandably hard to dig out - and it's tempting to retreat to your sanctuary (bed), rather than have to face getting back to a new and different sense of 'normal', and living, with this new set of problems.

    It's hard to do alone, and in fairness, you've taken the first virtual step, by acknowledging there's a problem - and asking about solutions. I'm wondering who you have at home for support, as you have the two boys who you are naturally focused on, as a mum.

    We have people online in similar positions, or who have been, so their input and support here would be invaluable. Sometimes just talking with, and getting to know others with similar challenges, can feel less isolating.

    I'm thinking there may be more treatment involved to help with the secondary bone cancer - maybe chemo/hormone therapy/etc.  However, that is only part of the picture, as it is your emotional and psychological recovery which is important too.  Have you a specialist nurse who is visiting you at home - as she or he may have access to support avenues locally.

    Talking through how you feel with your GP, can be helpful too, as whilst what you're feeling sounds entirely normal and acceptable to me, given your circumstances, he or she can ensure you don't slip into depression.

    If you live near one of our Maggie's Centres, and can get someone to bring you in - you'd find considerable individual and group support and encouragement available. Here online, you can talk through anything, via personal message with Robyn or myself - and if there has been a financial 'knock on' effect from your recent diagnosis, you might like a word with Tom (Tombenefits). We also have an online support group for people diagnosed with secondary or recurrent cancer - as well as other groups and courses. (see here for the list of our 'live' groups, and how to join).

    I'll send you a personal message, Sue, to introduce myself properly,

    Warm wishes

    Sue

     


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