My husband is in a bad way. He has NHL as a result of a kidney transplant earlier this year and it's not looking good for him. Our hospital ceased chemo in August saying there was nothing further they could do, but (after a few weeks) he has recently been accepted on a clinical trial so is getting active treatment once more. I don't think it's going well though. Medically he's getting plenty of attention, but at home I'm struggling with watching him get ever skinnier, eat less and less each day (now pretty much only those "meal" shakes - his cancer is in his throat, so it hurts to eat), and sleep more and more. It's incredibly hard to watch, but at the same time keep things on a level for our 13 year old son. Our son knows his dad's sick - there's no hiding that - but I don't want cancer to consume his life too so try hard to keep things "normal" for him.
I'm finding it increasingly hard to keep all the plates spinning - caring for my husband who I'm scared is dying and keeping things normal for our boy - plus staying on top of drugs, hospital appointments, general house stuff etc (thankfully my work have been amazing and I have some time off there). I can't be what I need to be for everyone and sometimes just can't cope with everything - but there's no escape from this. I also am starting to really worry that nothing can happen to me - if I'm the only one left I need to be around as long as I can.
I know I'm not unique in going through this - and these thoughts, and I know nobody can take it away - but you'll understand, and that'll help in itself.
We'll find out if the trial is working next Thursday but I just can't imagine it is.
Hi Kitlou
Sadly so many of us can relate only too well to what you're going through. You are coping so incredibly well ..but I guess you'll just have to trust me on that.
I hope you get positive news on Thursday. We speak to the oncologist on 21st for results of my husband's latest MRI and to be honest, we're bracing ourselves for bad news. The last scan showed a second tumour so this latest scan should give us an idea of how fast its progressing.
I'm supporting my husband through a stage 4 brain tumour journey. We know its not going to have a happy ending- we've known that right from the start when he was first diagnosed in Sept 2020. Our kids are older - 22 and 24- but like you I feel I have to keep going and not let anything happen to me. I guess that's just the natural carer coming out in us both. My kids have never lost anyone close to them and I am concerned about how they will cope. When the time comes, once I know they're ok, then I will pick up the pieces of myself.
It is the strongest, most resilient people who show their emotions. It's ok to have off days. We're human beings and we run on emotions and that can be both exhausting and overwhelming.
Over the past two years I've drawn a lot of support from this group. It's a safe supportive space and there's always someone around who gets it, someone to listen, someone to hold your hand and offer that virtual hug when we need it. You're not alone.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now, I'm sending you a huge virtual hug. Stay strong. Stay positive. I'll be thinking positive thoughts for you on Thursday.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Thank you for your kind and wise words Wee Me. I'm only six months into the cancer part of this journey so your two years feels like such a long time (and I know lots of people will have been on this far longer too). I know none of us can do anything to make all this go away but it's amazing how much the right words can give you a boost.
You see cancer stuff literally everywhere on the news but I was feeling quite on my own trying to make our lives feel "normal" when they're not. It's so good to have access to a group who are in the same boat - I wish none of us were in that boat at all but at least we're not alone - and that helps a lot.
Thank you for your positive thoughts - I'll put them to good use and send lots back to you too - you need them as well. And once my boy's back at school tomorrow I'll call the support services line too.
xxx
