Struggling with this limbo land

Hi all, 

I know I posted recently but sometimes just getting it all out helps. 

Basically as the title says, this limbo land is a total headscrew with the constant uncertainties. My lovely Mum who's only 56 has stage 4 triple negative breast cancer and stopped treatment at the end of Nov last year as it had stopped working. The oncologist said she'd be lucky to see Christmas so we all panicked and got all the family together and had an early Christmas. We're now on the last day of Feb so 3 months with no treatment and she's still very much here. 

She's under palliative care with a hospice. She's still at home until it all gets unmanageable then she'll be actually in the hospice. Where I'm struggling here and it makes me feel selfish saying it... I don't know how much longer I can keep doing this. Ever since that oncologist said what she said which I'm annoyed at to be honest, I've been mentally preparing for her death. Any time line now I take with a pinch of salt. My Mum said she feels like she has weeks but she said this in early Jan and we're still here. Then yesterday we went to see the nurse at the hospice because my Mum needed her pain meds upping and the nurse was very blasé and said 'ohh she'll be here for a while yet, she's not showing end of live signs'. I'm just like what on earth!?! My Mum's always been a very positive and upbeat person no matter what. During this whole cancer journey she's still always had her get up and go and the nurse I saw yesterday doesn't see what I see sometimes. I see my Mum sleeping a lot more, appetite changing, breathless over the slightest things even just talking on the phone whilst sat. I see my Mum some weeks and truly feel she hasn't got long then other weeks I'm like blooming eck, she's doing well and I feel a fraud for telling everyone including work that she's at the end of life and this is where my head is a mess.

I'm currently off of work with stress but the point is, I live alone, I rely solely on myself to pay the bills. Me being off on sick has to come to an end because I only get full pay for 30 days. I've exhausted all avenues with compassionate paid leave and annual leave but as this is going on much longer than anticipated, work can only accommodate so much. For some people work is a distraction, for me it's a burden because I have a very demanding job. If I had a crystal ball I could plan things better. Maybe take out a loan so that I can go off long term but with zero knowledge of when she might leave this earth, the limbo in the meantime has broken me. I just can't explain it. There's no doubt I'm depressed. Every day is a struggle. I've done everything I can in terms of speaking to work, my GP, doing what I can for my mental health but nothing can help with the stress of money worries and uncertainty with how long this will go on for when I thought at this point she wouldn't be here. I'm past the point of 'just go for a walk', 'jouurnal', 'speak to someone (I see a therapist once a week and she's very helpful in that moment but then I'm on my own again). I'm honestly past that point and have honestly felt suicidal at times. Money is a huge stress in all of this and I just wondered if anyone else has been in a similar boat and how you coped. I'd like to avoid loans and credit cards. If I knew we had say another month I could get by but if this went on for say another 3 months, I could see myself losing my job because I just can't cope with Mum and work at the same time anymore. I can't reduce hours either as I can't afford it. 

Sorry I know that is a huge rant and if no one replies at least I got it off my chest. 

  • Hi I just wanted to say that although I'm not in your position I do understand how tough all of this must be for you ,for you and your man who knows what she's thinking either ,money is such a big worry especially when you are on your own ,you must not know which way to go ,but what I really wanted to say is and you'll know all of this is temporary when you talk about feeling suicidal at times that is permanent and you don't want that ,in a few months from now things will most likely be much better and you'll be able to see things much clearer ,you are bound to be stressed and confused as to what to do for the best ,who wouldn't be ,have you asked for extra help for your mam so maybe you could go back to work for a while as you say at some point she will be going into the hospice which will be good for both of you ,we have a relative in a hospice at the moment she's been there since before Christmas apparently they are lovely places to go to ,so as I say it was just a friendly little chat to let you know you are not alone .this is a lovely site where you can chat to people ,I hope things improve for you as time goes on x

  • Hi Jenny, thankyou so much for taking the time to reply to my post x What you said has definitely helped me especially the reminder that non of this is permanent, that's something that really helps me these days but I have to remember to remind myself sometimes. 

    With work/Mum, it's not even so much that I'm caring for her much. She's still pretty independent on the whole but I struggle because we both live at opposite ends of the city and I don't drive so going to see her is around an hour and a half commute on the bus then train. Then work I can be doing 12 hour shifts. I do need to try and look on the brighter side in that in my job I've not got a busy month this month and I do have a week off coming up towards the end of March. It's just so hard to look at those positives sometimes because every day getting out of bed and doing life is just mentally sucking the life out of me right now. My sick note ends 11th March and I'm going into work for a chat before that about everything (more for my benefit because of my anxieties) and then I've got to think, I'm only back for 3 days work then on days off so if I can just find the will to push through. 

    Thankyou again for your reply, you've really helped and I'm sorry to hear that you have a relative in a hospice. As you say though, they're lovely places as the one my mum is under care with are fantastic and such lovely people x

  • Hi StrawberryBear

    I am so sorry to hear how stressful this is for you 

    Do you have a Mind near you or spoken to a counsellor maybe at the Hospice ( i know every area does things differently) 

    What we have in common is anticipatory grief....when you are expecting a loss....

    Re finances if you havent alreafy contact Macmillian suppirt line they sorted out Carers allowance and pip for hubby this may be helpful

    Every persons cancer progresses in unique ways but it might be worth talking to pallitative care team about what to expect...i plan to do this 

    Most importantly please make a plan for dark days

    .who you will reach out to to keep you safe x

    Biggest hugs