Monday, 5 December 2011

2011 5th Dec - Till You Go Walking In My Shoes

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.


Anonymous said...

There are no words. Love you BB.

F xx

Anonymous said...

And I am still planning to visit! Let me know whether 10 or 17 is best for you. I have stopped coughing, finished ze tablets and managed not to pick up anything in the hosptial. A fucking miracle in itself! So I think I am clear for takeoff.

If neither of these is any good, I can take a day's hol and come on either 23 or 19. That way I don't crash into Karys/Phoenix time.

Since I can never think of the right thing to say I will leave you with my joke of the day. (And happily, this one is not about beastiality or genitalia...)

I heard that Suggs was raising money for Amnesty International.
It's madness gone politically correct.


BB love. xx

PS my word verification is "Cacko"!

Tony Songhurst said...

What sort of sense of humour do you have...Mine was always a little warped and I would laugh at non PC jokes although don't want to offend anyone...Since I have become ill my sense of humour has got worse... Let me know and I will see then if I can risk a couple of jokes that I found funny!

By the way, I have tried to walk in your shoes and honestly I cant...

T x

HelĂȘn Thomas said...

Nope, can't imagine walking in your shoes Lisa. I've usually got facebook on in the background if you want a moan....or a page full of spammy 'funny' cat videos. xx

Carole said...

Much luv Lisa xxXxx

Loopy said...

F, either 10or 17 is fine Karys is here till about 5ish Saturday pm so it would be nice for her to meet you too. I am literally unable to anything but the bare minimum but you're kinda used to my laziness :-) Thats really not bad for a BB joke (notoriously B A D) x

Loopy said...

Tony & Helen I'm sometimes found trawling cat videos myself, current fave is Russell Howard's "no no no no no no no" cat. Found techno version a la no limits. I prefer tv or stand up comics to actual jokes though

simmer said...

morning :-) listening to the mighty arsenal on the radio and wondering if you have any champagne in your fridge?? or even in a cupboard . waiting to be veeery chilled .

Tony Songhurst said...


Have you ever heard of Simon's Cat...Hilarious Cartoon! Let me know what you think.

T x

Todays word verification is Colons, if the word verifications are random then that is just weird!

Loopy said...

Erm can't touch alcohol given the opioids, tranquillisers and anti depressants! Experience proves it makes my pain worse. I have half a small glass in toast to my lost friend Bec every few months when the BBs get together, pink was her favourite so that's what we have. Worth any pain to remember such a beautiful woman inside and out.

Loopy said...

Ha ha tony they could have picked any word in the dictionary but hat one. Will look up Simons cat.

Debby said...

If you're looking for a giggle, go to

You are correct. I cannot imagine how it feels to walk in your shoes. Know that I pray for you and your family.

Anonymous said...

OMG I second Simon's Cat!! When I first saw TV Dinner I was convinced "Simon" had somehow installed CCTV in my house! Cat Man Do is also very funny. Oh and the kitten, the KITTEN, bwaaahahaa!

My chest has started dissolving again so 17th is looking more likely than 10th. Hope that's okay with you.