Maggie's

See what's happening in the Community

You are not logged in.   Log In

Meet the team

As well as sharing experiences with our friendly online community, registered members are able to contact our experienced online team. The Centre is staffed during office hours and the online team aim to reply within 24 hours.

Psychologists and experts from other Maggie's Centres and partner organisations also facilitate some group and individual sessions.

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

Topic

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 alone

Started by Anonymous on 14 May 2015 at 19:30

hi i am new to all this and hope someone can help me understand the feelings i am going through.  Ill give you a little background hubbie was diagnosed with bowel cancer in 2011 been through the surgery radiotherapy and chemo - lost count how many chemos!  was told it was terminal and he had a year 2 years ago he seems to be doing ok at the moment recent scan showed not much change which is good.  He has cancer fatigue currently and periphial neuropathy and spends quite a lot of time in his bed.  We have two children soon to be 11 and 13 one of each the youngest girl never wants to go to school cause she wants to stay with her dad and i think my son is angry at his dad about promising things he doesnt do.  I work 3 days a week 9-3 but also have to do everything else and it gets to me alot i recently had 5 weeks off work and felt so much better sleeping well happy kids seemed less stressed no stupid thoughts, was back maybe 2 weeks and i feel exactly the same as before.  I feel so angry that he lies there unable to do anything, no sock matching, no putting a wash on, help with homework no nothing and im angry really angry i want to quit work and feel like a normal person not someone on antidepressents and anxiety meds who feels like taking every tablet under the sun.  I want to help my kids cause i know they are struggling even though things are as normal as they can be right now.  any advice appreciated.

Comments (3)

latest | oldest

Displaying 3 comments

  • From Anonymous
    19 June 2015 at 19:11

    Hello there, I'm not a carer, but someone who has cancer. I was struck by your frustration and anger and my heart goes out to you- but that's not going to help you, I'm sure. Some of what you have written has really struck a chord with me because it mirrors how (I think) my partner must feel at times. Can you leave your husband on his own? If you can do this then you need to get out with friends, your children, or even on your own on a regular basis. I insist that my partner goes out on a regular basis because even if it's just a few hours away from cancer and everything that goes with it, it seems to help him a little. I know it's a cliche, but how can you look after everyone else if you're not looking after yourself. You MUST focus on your health, both mental and physical because you are having to spin so many plates. Do you have people you can talk to. I mean really talk? Have you considered counselling for yourself - and maybe even the kids? MacMillan might be able to help with that. Maybe I am saying stuff you've heard many times before. If so, I'm sorry. But you CANNOT and should not expect yourself to be Superwoman. I am so sorry you and your family are going through this. I hope that you manage to find some light at the end of the tunnel. Sue


  • Picture of Tombenefits
    From Tombenefits  
    15 May 2015 at 18:24

    Hi,

    I know you really want to hear from fellow carers about the place, so I would really encourage anyone to join in with their shared experiences, tips to share

    It can be so hard juggling everything: your husband, the kids your work, the house. And being strong for everyone else as they go through their own emotional storms, when you'r struggling to keep awake and cope with the huge emotional turmoil. It can tiring, frustrating and lonely.

    We can ask the impossible of ourselves and then feel the guilt of snapping when tiredness and frustration feels overwhelming 

    When I talk to people with cancer about day to day difficulties in relation to their benefit claims, they can often be less obvious than say for a wheelchair user or someone with arthritis restricting their movements. Things work and stuff can be done, but that often means battling the harder to pin down - but still very real - limitations from  chronic fatigue, low mood, lost confidence, addled concentration.

    Meanwhile you are running yourself ragged to try and keep all those plates spinning to keep things normal. But of course it's not really "normal" - or not as it was. More a "new" normal than can feel edgy, jagged and tiring.

    I was struck though by how different things felt for you when you let one of those plates go for those 5 weeks, and just got some space and rest; making you better in yourself and and as a carer and all round saint too :-)

     Might there be scope for either cutting work down a bit or taking time out for a while?

    Now that might feel scary or impractical. You know the importance to the family budget of that take home pay figure looms large. I feel your wan look and patient sigh - get real, Tom :-).

    But ...it may be that in stretching to get those earnings, you could be denying yourself benefits that might cover a large part of that figure on your wage slips. All this talk of raising income tax thresholds, can hide the fact that some people on low incomes are paying an "effective' tax rate of up to 85%, through lost benefits.

    So in some situations a carer moving mountains to take home £200 could be actually working for £30

    It need not necessarily mean giving up work altogether - perhaps there is a balance ito be struck between freeing up time and the retaining a positive focus of some life outside the home . It could then be seeing if there is a happier work klife balance to be had from less hours to none?

    Obviously it will depend on your employer and flexibility. But it may be easier for them to plan around a longer term reduction/time out than the unpredictability of absence when the wheels slip off the wagon, despite your best efforts.  

    Financially, benefits can help: 

    1.  Carers Allowance can be paid at a flat rate non-means tested  even if you are working, as long as  earnings are less than £110 a week. 

    2.  If you are getting tax credits already then you can look to getting these adjusted for reduced income. And if not you could see what a claim might bring in

    3. If you have rent to pay, Housing Benefit can help in or out of work. Amounts can rise as your income falls - at a steep rate of 65%

    4. Council tax support can add another 20% or be paid on it's own if you are owner occupiers

    5. Mortgage interest could be helped via Income Support, which can also top up Carers Allowance if you cut back on work substantially

    6. And it may well be worth looking at the often underated health impacts on you that caring can have, whether through "sickness benefits" and/or Personal Independence Payment

    It all depends on your particular household circumstances and what other income is coming in, but I can certainly do some sums with you. At least then you can see what reducing hours or stopping work would do financially.  

    I will message you and we can do some sums in private if that would help. I'm not guaranteeing it could match your earnings, but it might at least open up / inform some options for you. 

    But it's far from just about the money and I know you would welcome comments and ideas from other carers, rather than my geeky ramblings :-). So please, o gentle carers about the place, do please join in.

    Best wishes

    Tom

    Online Centre Benefits Advisor


  • Picture of SusieQ
    From SusieQ  
    15 May 2015 at 12:06

    Hello,

    How tired you will have been with all this going on for so long...

    The craving to have your old life back, and not to have such a lot of daily stress, is natural. I find that people don't always realise the huge emotional toll cancer has on the whole family. Your husband has had lots of treatment, and been living with the cloud of a 'poor prognosis' for some time - and he may be physically exhausted, and perhaps have some depression?

    The focus of all the health professionals involved in his care, may be mainly on him and his treatment - whilst you, as his wife, are carrying an equal emotional and physical burden. You're keeping the house running, working, looking after and supporting the children, who are both in early adolescence with all the accompanying challenges that can sometimes bring. I'm not surprised you're exhausted and would like a sense of normality to return.

    It's good that you've admitted the frustrations of coming home to yet more work, when your husband is at home. He perhaps hasn't the energy to do it, or not seeing the issue, and it may be that you both end up being cross with each other about the day to day niggles. Your anger is likely not to be totally about the household chores not being doen...but with the whole cancer experience, and what is has done for you all as a family unit.

    I think you've identified part of the difficulty yourself...you can't be superwoman, and yet you've had to be. When you were able to have some rest, things felt more in balance, but it may be that you have to work too? (I'll ask Tombenefits to add his view here, as there may be financial options, benefits wise, that may help?)

    The children have had several years of uncertainty and worry about their dad, and the relationship he has with them, is affected by his lack of energy, and possible low mood. it sounds like your daughter feels anxious that something might happen whilst she's away at school. Your son meanwhile, may be feeling resentful that he hasn't got a dad who can do the stuff other dad's too. He may feel angry too at the situation in general, and find it hard to put into words.

    They may find the website 'riprap' helpful, which is a website for teenagers of a parent who has cancer (your daughter can access it too). There are stories, forums, and advice sections, where they may realise that what they are feeling isn't unusual.

    In the meantime, there is support for you on here...we have an online 'Family, partners and friends' support group for eaxmple, where you could text chat online with a group of other people in a similar position...(just follow the link here for information on our online support groups).

    Other online members may have ideas to help and support you too.

    Meanwhile, I hope you'll get in touch with Robyn or myself to talk things through, and feel less alone...

    Warm wishes

    Sue

     


Displaying 3 comments


Registered Office: Maggie's, The Stables, Western General Hospital, Crewe Road, Edinburgh EH4 2XU   Registered Charity Number: SC024414
The Maggie Keswick Jencks Cancer Caring Centres Trust is a company limited by guarantee   Company Number: SC162451