Stuck in limbo

Hi Lesley20 

While my dad did not have cancer we lost him bit by bit to a series of seizures. We supported him as best we could until the point he needed more care 24/7 than we could provide and this was punctuated by quite a few hospital stays.

My wife's cancer has been different though our adventure did not totally start there. However when I look at Your feelings when someone has cancer I recognize quite a lot of the emotions I have gone through - and at probably more than one point broke me.

I finally decided to reach our for help at my local Maggies centre, then I joined our happy family on here. It can really be surprising how typing at a complete stranger on here can help but our experience is even that tiny human touch makes us feel more connected.

The feeling of being exhausted is very common, something I know I had to learn was how to look after myself and recently I saw a great analogy on here  - fit your own oxygen mask first. Our GP is great and that is very helpful. He has on my records that if I ring and say "I need an appointment" he will move heaven and earth to make sure I get seen -  he has faith in me not to misuse this and just knowing this is in place is often a big step in being able to be OK.

Hope that helps, hope you find our family on here at least an element in the support we all need because together I think we make a great team.

<<hugs>>

Steve

Hi Lesley20

I hear you. I commented to a friend recently to a friend that my life is still being lived largely in lockdown- like conditions.

I've been supporting my husband through his stage 4 brain tumour journey since Sept 2020. Although he remains physically active, he was  moved from the oncologist to palliative care about 7 weeks ago. At that point we were told to get the "just in case" drugs asap and be prepared for the worst to happen if his tumour moved into the brain stem. When we asked about the prognosis we were told "a few weeks maybe 2-3 months" Since then limbo has continued but there's also the added weight of this "sword" about to fall.

Like Steve, I feel I've gone through all the emotions listed in the link he included. This is an emotionally, mentally and ultimately physically exhausting rollercoaster ride. But as carers we keep going...we really don't have any other choice at the end of the day. Some days are much harder than others.

I wrote a community blog for MacMillan last year that might help a little here “I’m fine”: how do you really cope as a carer? - Macmillan Online Community.

What really tears at my heart a year further down the line from that blog is that my son and daughter have also had to put their lives on hold.. They are now 23 and 25 and should be living a young carefree life but this "limbo" existence is quashing that. Seeing them start to struggle with this whole situation is beyond hard . They have been absolute superstars throughout but they shouldn't have had to watch this. 

Like you I want my life back- I want them to have their lives back-  but I no longer know what that life is. 

This is a safe and supportive space so please reach out here anytime. We get it. We're all there for each other. Its a great community to be part of.

Please also take care of yourself. It took me a while to realise it but taking "me time" isn't selfish. It's essential to help you recharge your wee batteries,

Sending you a huge virtual hug and lots of positive energy. Hang in there there.

love n hugs

Wee Me xx

My wife was diagnosed with lung cancer nearly two years ago.  She has good days and bad days. Due to her condition and where we live, I feel totally isolated. I can't go out with friends,  my wife sleeps a lot, going out we need to park inches from our target location due to her need for oxygen. I am 69, I only carry on with work so that I can escape for a few hours.  That will stop soon as I worry the whole time I am away. I am certain the stress is getting to me. Simple answer to your question, no you definitely are not alone. 

So much of what you say I could have written. My husband is at a 'last ditch treatment' - 'palliative care' junction just now. I inwardly oscillate between wanting him to hang in there and delay the cancer, and wanting him to accept an end point, manage the pain and live his fullest to that point, knowing that it is me wanting the certainty this will all end, because the idea of staggering onwards living this 'cancer lockdown' life for 5 - 10 - 15 years would be simultaneously wonderful and unbearable for me.