Can you put yourself in my shoes for five minutes?
Five days a week I spend 24 hours alone, in pain every time I get up to get a drink.
I lie on my sofa, I cannot sit, the pain is worse sitting up and lying on my left or flat. I watch TV, because what the hell else can you do confined to bed/sofa? I play some games too but for company, the TV is on. Yes I watch shit I would hate to admit to a couple of years ago, don't criticise me for it, it's my way of coping with the quiet.
I have no appetite so force a yoghurt, piece of toast and maybe a ready meal down, sometimes not even that much a day, it's too painful to get up.
So I lie on the sofa, then go to bed, woken a few times by pain if I roll from my right side.
No visitors - other than district nurse monthly.
Just sit and imagine how that would be for you, alone for five whole days in a row nearly every week for months on end, how isolated and lonely and miserable might you feel with nobody to help, get you a drink or make you a meal, make you comfortable when you're rolling about in agony unable to get comfortable. How would that feel, would you feel happy?
My right shoulder hurts from never being in a different position. Thats my life. My existence.
Yet most days I somehow manage to put all of this away and still be happy. I get odd texts from the BBs, emails from my daughter in the evenings.
Luckily my one friend (BBs and long distance excluded) calls sometimes daily to chat about anything and everything. If I'm feeling shit I might mention it, or I might not to distract myself for that half hour of escapism and contact with a human being. Sometimes I fall asleep around the time he calls but he still calls. It's just enough to manage, if I had lots of people ringing daily I'd go mad but nobody did until he started.
Oh apart from my mother with this list of questions/interrogations making me think once more about how crap my life is:
How are you eating (same as last two years, I have NO appetite)
How is the pain (I was trying to block it out but now you ask, fucking shit)
How are you sleeping (in my bed/on sofa, woken by pain same as EVER)
How is your mood (since I knew you'd ask all these questions I'm pretty angry/distressed now)
Have you seen the children (yes every sodding weekend like I keep saying)
I finally told her to stop, she said she thought I'd prefer to talk about myself than hear anything she had to say? WHAT? I'm so sick of myself and my weekday existence if it weren't for the weekends I'd give up now. What I suspect she means is she needs to update her online "friends" so she sounds like she is a proper involved mother. Unlucky. After her husband wrote a very personal, detailed, incorrect article about me without permission saying I MUST have chemo asap after surgery I won't give her personal updates any more for fear of what else he will twist. Nobody tells me to have chemo, nobody. The chemo does NOT make my tumours disappear only to reappear again, it never has, it slowed growth in my lungs and shrunk a bit of the liver tumours, all of which have increased again, possibly a lot. His article was a load of rubbish and after taking it down he wrote a carefully worded apology which didn't really feel like one.
After finally confessing I cannot cope with their forced week long visits every few months (every afternoon they sit here talking about nothing, I feel old in their presence, if I want to do anything I can't for a whole week because they insist on coming every day) my mother has refused to visit without her husband so I shan't see her again, this is where we were 3 years ago when I was having chemo. She chose him over her sick daughter, she's done it again. No visits unless he comes, attached to her like a limpet. That's love for you.
When my kids are here at the weekends I won't cry like I do at night or during the day when I am so lonely and miserable. This weekend Karys got upset and it breaks my heart that I'm hurting her and can't stop it. We had cross words about a misunderstanding and she was mostly upset that she got cross with me because we have so little time left. We had a cuddle on the aptly named cuddle sofa and I told her I'm just trying to give her all the advice I need to before I go to help her cope with life without me there. I told her we can still disagree on things, that I can still be wrong.
I'm going to have to talk to my son soon to see what he's keeping inside.
The Mac nurse (new one) has increased one drug by a third, it's no where near enough. Now I've had my scan I hope she can get me a hospice bed to sort this out. My quality of life is the reason I stopped chemo but still it's eluding me.
I'm trying to prepare for the end of my life, sorting my mortgage, my will, letters to people, my funeral, what to do with my belongings, making sure my paperwork is filed and easy to find, making memory boxes for my children. Oh and I'm still trying to survive day to day in all this pain.
Please don't ask me to tell you how to deal with my illness, how to communicate with me, what to say and when. Your day goes on as normal, perhaps tinged with sadness some days or the odd tears, fears for yourself or your children. You can still work, play, go out, have friends who don't abandon you because your illness is "too much" for them to cope with. You may have your own troubles with money, work, relationships or health but unless you've walked in my shoes you don't know how hard this is, alone.