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spouse, carer, cholangiocarcinoma, terminal
Hi All, My brain feels like scrambled eggs. Hmmm... scrambled eggs sounds good actually. I haven’t eaten today yet. I am writing this blog because I am sitting down at the moment, I am so tired and I don’t have anyone I can talk to. I’ve tried to have a cup of tea but it has gone cold and been in the microwave three times now it is probably radioactive. I give up. Everybody says you need to look after yourself too. You won’t be able to look after anyone else if you’re ill too. Well, I will look after myself when I get the time or the energy. I am exhausted in every way and our journey ain’t over yet and I know there are going to be tougher days ahead for me, the family and especially for my precious husband. He has put up such a tough fight and he is a stubborn man. It has been really hard for him to lose control to this illness. They told us he had 3-9 months over three years ago now. Honestly, the stress alone of those scans every three months, the sleepless nights and wondering if this scan is going to be the one that says it’s the tumour is growing and it’s spreading is soul destroying. The relief and gratitude you have when they’d say “there is no significant change” doesn’t take all of those emotions and fear or the effects of it away and make it all OK. It never does.Well, we have had that dreaded scan about five months ago. Oh…be back in a minute…I’m back. Just went to make hubby’s lunch. A bit of sliced roast chicken, cheddar, buttered bread and I threw a bit of salad on the plate just to get some green on it. He probably won’t eat it though. He finds it really hard to eat much of anything. The tumour is causing a blockage/partial blockage in his stomach. I try making him things he really likes even if he can manage only a bite or two. Yesterday he had pie and custard for lunch. He has fortisips (chocolate only) to supplement. He has always been a really picky eater and now that he feels so ill he is: picky x 10 = I am watching him waste away. Oh… gotta go he’s calling me. I got him one of those hotel reception bells so he could ding me if I am out of earshot.Thanks for letting me have a moan. More scrambled brain moaning to follow.
I do hope you manage to get some sleep.HUGS xx
Beckenator -
How brave and amazing you are. Has anyone ever told you that? It must be so very very hard to keep going with all those emotions having to be put aside as you look after your poorly husband. How can we ever explain all this to people outside? They just wouldn't get it, wouldn't have an iota of understanding what it's like. I'm so glad you find a tiny bit of time to write down what you feel like here.
In Macland, you will find so much support from people who know. That is my experience - being able to say anything and everything and people know what it is you are having to face every single day.
You talk about the utterly exhausting business of having to get through each day with little sleep, living with fear and then relief but stil the fear is there. Be kind to yourself. You are doing an amazing job. I guess we just have to try and live each day as it comes. It is all anyone can do. Do you talk to your doctor about this? Have you tried ringing any of the Mac counsellors - phone number on the site - because they are excellent.
I am not much help, but wish you all the strength you need. And am sending you a huge hug.
Little Jen X
Thank you so much for your replies. So sorry it's taken me so long to get back to you. Thank you for your support, kind words and hugs. :-)Beckyx
Hi Becky, I have only just read your blog as I have only come back onto Mac after about 3 years when my husband had postate cancer. I came back on here as he was diagnosed with leukaemia on 1st June and what you wrote in many ways sums up the way I am feeling. I think you are amazing and knowing what you are going through has made me realise I am not alone, in the way I feel, at this moment. As you said they say we must look after ourselves but it isn't that easy when you are so exhausted and it's hard to explain to anyone that hasn't been through it how exhausting and stressful it can be. People say to me it's worse for my husband as he is the one that is having all the chemo, they don't realise how hard it can be for the person caring for them. Even though my husband is in hospital at the moment, in isolation, having his 3rd chemo, going to the hospital every day, to help him get through the day, is so exhausting. Then the the days he is out, between his treatments, he can't do anything for himself, he is just so weak. So my heart really goes out to you and I hope that you also, like me, find the strength to get through what you are going through. Take care, and lots of hugs, Dianex (Glasheen)