How do you keep going?

HI Gingernut, 

Oh I hear you!  And I can totally empathise with you too.

My husband was diagnosed with a stage 4 brain tumour in Sept 2020 and given 12-15 months at that time. Now two and a half years later, he's still here and until fairly recently had been physically ok. HIs key coping mechanism has been denial. Even the other week on the video call with the oncologist who was talking weeks, a couple of months at best, my husband was still thinking he has 6 months. It's emotional torture watching this unfold.

Someone said to me way back at the beginning of this journey that the person with the diagnosis has it easier than their loved ones. At that time I thought that was quite a cold hearted thing to say but now in hindsight, there is a lot of truth in it. Finding a way to keep going day after day and also to face a future without them isn't always east.

I had written a blog a while back for MacMillan about how we carers cope (here's the link in case you want a wee read at ait “I’m fine”: how do you really cope as a carer? - Macmillan Online Community) There are no hard and fast ways to cope...we just muddle our way through. On the tough days I break the day down into manageable chunks. I do still make the effort to get out in the fresh air every day (some of that has felt very fresh this week with the icy weather we've had). I journal. I write. I practice yoga for half an hour in the morning before anyone else is up. 

I take it all one step at a time...and so far my track record of making it through the dark, bleak days is pretty good.

This online community has been a great source of support to me over the past couple of years. This group and also Carers only forum - Macmillan Online Community have been great. This online community is a safe and supportive space. There's always someone around to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed. You're not alone. We're all here for each other.

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 though I'm sending you a huge virtual hug and lots of positive energy. Stay strong, This is a total emotional rollercoaster ride but you are coping so much better than you give yourself credit for. (You'll just need to trust me on that). We will all get through this.

love n hugs

Wee Me xx

Thank you so much and big hugs to you too. I keep trying to be positive and take a day at a time but it’s not an easy journey. I can’t imagine what he is actually going through and I think he doesn’t want to upset me either. It seems so unfair and undeserved but this group does remind me that we’re not alone and so many others are suffering too. I will keep going because life doesn’t always give you choices and each day is precious.

Hi Gingernut

i too am in the same situation my beloved is coming close to his life expectancy how he is putting up a good fight and I know the day will come when he won’t be able to. He’s in the process of sorting out his affairs which is quite hard helping him to do but in the long run it will make life easier. Trying to be strong during this process is hard and as R does say so long as I’m strong he can be strong and it’s visa versa. It’s mentally draining especially as when seasonal times are upon us your thinking is this the last one for both of us. So I make sure we enjoy those every little moments for both of us. 
Thank you all for taking the time to read this. It’s good to be able to put my thoughts into words rather than it  rolling around in my head. 

Hi it's all just so difficult all round I really don't know how we find the strength to keep going. Yes the seasons are very difficult have we had our last Christmas? will he still be here for Father's Day? You're right it is mentally draining I am still working for my sanity as much as anything else. Happy to read your message it makes me feel slightly less alone in the world even though I am lucky enough to be very well supported. Please pop your thoughts on here I am so nervous about how this all ends and how we carry on so please share.

Take care xx

Hi gingernut and k27,  sending so much love to you ️ it’s a horrible road to be on.. we are on the same track. I wonder how much I can keep going with this rollercoaster and I so want to get off now! Like you I’m so scared as to what’s to come! I want my dad here but want this mental torture to be over for him. I wish it all never happened. We have no control in this which is terrifying.. but doing your best has to be good enough. It’s heartbreaking seeing him deteriorate and having to see him think about sorting his affairs out. It’s hard on my mom too. I’ve done all I can but it doesn’t feel enough. I wish I could do more. 

please try and look after yourself in this (easier said than done I know) I’m sick of my eye bags and redness (from crying) I feel about 90 but I’m 40. I can’t imagine what our loved ones feel. I have no answers but wanted to send you a hug! Take care of you x

Weemee I read your posts and they are so very helpful.. I wish you love. Sending a hug. Thank you for your blogs x

thanks Louise8321. Appreciate that hug. Glad to hear my posts and blogs help.

love n hugs

Wee Me

Hi Louise8321

You are doing enough, I can guess the answer to what I’m going to ask  So far what would you change that you have done. Yep absolutely nothing so in your heart you cant do any more.

It is a rollercoaster journey and all we can do what’s in our ability. For me personally as much as I wish I could do more but we are confined to what they are able to do and cope with. I don’t want to have any regrets when R has gone and if that means just trying out a new recipe and enjoying the moment. We went a couple of weeks ago to pay for Rs funeral and pick his coffin which was a hard thing to get my head around however my thinking is none of us have control of what’s happening and for R he can control his funeral it gives back some sense of power and comforts him that some of the burden is removed. I am very lucky as we are quite open with one another and R does say it’s not all about him it’s me too. 

Be kind to yourself 

Thank you k27, I’m just so sorry we are all going through this ️