Friday, January 28, 2011

Bedside manners


Jess: how you going to wash your hair Mom?
Me: in a bowl you just splash a load of water on and give it a good rubbing. It's all ever did when I was a girl
Luke: is that before you used to spread the beef dripping on?

Me sitting on a bed pan at visiting time nothing happening: is that me or Danny?

Me to social worker: my husband has been endeavouring to meet my personal needs for 42 years why change the habits of a lifetime?

So the legs are worse, no feeling at all from top of thighs down. Doubly incontinent too and that's a breeze in the main. I can wash and brush half way, including the hair scrubbing and beef dripping application and then the nurses take over. They do it tenderly, with humour and it's really rather nice.

Yesterday I went to the gym and managed to shuffle from a slidy banana, ooh er missus, onto a wheelchair. So that was progress.

Social worker and OT have started the discharge process and so beds will be arriving and carers lined up. I have to prove I am a medical case to get funding but that should not be hard.

To say it has all been disturbing is an under- statement. To have totally senseless stumps sticking out of you and not being able to twitch a toe puts a very different perspective on life and knowing that this is your life now no going back. But I am coping friends I am the cheeriest on the ward. As I said yesterday I am still me, I can write a symphony, I might just try and publish this blog and become a strange, quirky, commentating superstar for a while. Who needs legs?

Wednesday, January 26, 2011

A good woman

So where are we? Well I am probably in exactly the same spot that I was in yesterday as I can't move off it. It is very disturbing to not be able to move your foot or lower leg when you feel you might appreciate an exciting change of scene. The physio says to send the signals down as the muscles need to remember the twitch but I get no twitch. I really need to be able to shift my bum but those close to me know that was always the case. It is a priority though and I will let the physios try to help me today.

I am eternally grateful for being a brummie at the moment. It wont mean much to you if you are not one but the nurses and porters with their quips and normalness are keeping me going. I quip back and I am me again. And we have a broad Dublin night sister who Is amazing, she is super efficient and puts the doctors right and she will gossip and exclaim and ask us about ourselves. She keeps proclaiming that we are good women and she may have something there. We have our whitterer who keeps sloping off to blow her hair and a couple who could do with cracking their faces but generally we endure with grace. Last night we had a spiritual moment. Those of you who read my blog will know I don't go in for such stuff but the lady in the corner who had had a really bad day had about 18 of her family around, they had her in stitches most of the night and stayed on after closing time. Then this lovely song drifted across the ward, all in perfect gospel harmony. Ok god did get a mention but it was all about being together in love. It hit the spot albeit a bit weepily.

And now I am the proud bearer of a portacath, inserted yesterday afternoon after a whole day of nil by mouth. A trip to the new hospital over the link and then to another gaggle of people ready for a laugh and to treat me like me. Scots this time so further back into my history. Apparently they sliced and inserted but I was off with the fairies and didn't feel a thing. Itsbecoming the story of my life.

Saturday, January 22, 2011

Keeping me on my toes

Well I don't suppose you could call it a boring couple of days. Thursday after a visit from the lovely hospice nurse who sanctioned wine with relish we went off to lunch at our favourite Birmingham eatery, Simpson's. This was the venue for our memorable anniversary meal last February. This time we were testing for wheelchair compatability alongside all my other criteria. It fared quite well, you have to park in a special place and take a back entrance but it's little hardship and they were all lovely and as subtle as possible. Set lunch for £35 including wine and all sorts of bits and pieces was great value and absolutely delicious. I drank the lion's share of the wine and I put the slightly wobblier legs on return down to that. Visitors completed the rest of a lovely afternoon including Harry who wanted to check on every change we had made to the house and all about me not being able to walk, how did I go to bed , the loo etc. Good questions as it happened as by the time they had all gone I couldn't. Legs just went completely.

We somehow managed that evening but it was all very perilous and on Friday it got to crisis point. I had appointments to go to but couldn't get up off the chair at all. Couldn't get to the loo, couldn't do diddly squat that entailed standing up. So 999 call and back in hospital, bed ridden at the moment. Will have MRI scan today, yes a Saturday! And we will take it from there. Still hoping it's not permanent but they are delicate old nerves down there.

So it's all keeping me on my toes if only metaphorically.

Tuesday, January 18, 2011

Our house in the middle of our street

I love our house. It's just about Victorian, it is long and thin and goes up quite a way. When we bought it we couldn't afford it and jumped from paying about £30 a month, (I know those were the days!) to about £300 and then that nice Osborne forerunner Nigel Lawson I think it was, put interest rates up to 16%. We had three kids, one job and Jess was on her unbidden way. We lived on lentils.

We have knocked bits down and added bits on over the last 30 years. When we started our business and ran it almost alone we bought original art and pottery. Two years ago we changed style and painted the walls Vert de Terre or some such Farrow and Ballness, Stewart adapted Ikea Billy shelves into posh looking display vehicles for our books and all the new pots and old stuff from my Mom's.

So this is my world now and I am grateful for it. I sit and just soak in the colours and the mix of bits and pieces, the lovely mysterious paintings. The photos of Pete my dog from about 50 years ago, the lovely cracked art nouveau vase my Mom gave me filled with fresias when Jess was born. The monk in the rain. I can do no other. It could be worse.

Sunday, January 16, 2011

Where from here?

I try to keep this blog entertaining, real but with a smattering of irony, a glance to the past, a smile or a tear. I enjoy making the patterns in the writing, the dom - de - dom. It is about me having cancer however and a particular bastard to boot. It's been tough of course getting the diagnosis, reading the stats, telling the kids, having the surgery, the radio and the chemo but I have kept to my own "let's keep cheery " brief.

But let's be honest I am struggling now to be very cheery about the fact I can hardly pick my legs up and that last night I had more pain than four labours rolled together - even if mine were famously easy. Ok today the pain is easier so that is good, in fact I am not in pain as we speak. Last night was a flare up from the radiotherapy on my equine vestige, of course it was, why should I ever have such pain again? Oh yes there is the cancer. Readers will also have picked up that I am a celebratory slob. I like nothing better than doing nothing but read and do the odd crossword but even I am jacked off that I can't straighten my innumerable cushions the way I like them or put my book away where I think it should go. I also find that I don't like telling people what to do or asking for help with simple things, I have only one abiding religious creed - don't wake people up when they are asleep ( will have to convert the twins) so I lie around worrying about asking for things in the middle of the night or when I want a swig of morphine .

I quite like the wheelchair we bought yesterday to get me round the shops, I liked being at eye level to the stuff and not having to make any effort and I have been reminded that love is about looking after as well as looking at and I thank my lucky stars that me and Stewart know and love each other and have no modesty whatsoever.

Tuesday, January 11, 2011

Horse's tail

Doctor's entourage just been, apparently my spinal column is just fine, well as fine as someone with lung mets etc can be. But and there is always a but, the cluster of nerves at the base of my spine, commonly called the Horse's tail has cancer deposits and that is what's causing the problems, so same difference really. Treatment will be 5 doses of radiotherapy to the place where my tail would be if I was a horse. Then I will start the sea squid aka yondelis so the fun begins. The physios will have a go at me tomorrow to get me on my feet again. It is hoped the radiotherapy will at least halt the paralysis in it's tracks and best case scenario turn me back to normal, if such I ever was. With a fair wind I should be out tomorrow or day after.

Noises off

Managed to sleep, or more accurately not sleep, lying down last night. That is good news as the pelvic pain is much better and maybe reacting to the steroids. Also I am getting a bit more feeling in bits that were going numb, even managed a hasty pelvic floor squeeze, not at the banana peeling stage but whenever was I? before Sam perhaps but I never tried it.

Lack of sleep due to aforementioned steroids but also to whoever was shovelling coal or similar in the night and doing the heavy duty polishing. Some bloke was sounding off very loudly at about 4 o'clock and it was a toss up whether I shot him or joined him on a rooftop protest. The noises have continued this morning in the MRI scan machine but considering my scary back and my claustrophobia it wasn't too bad. Let's hope the results are the same but until then bed rest and lots of reading.

Monday, January 10, 2011

Hospital again

Legs collapsed this morning and I fell quite elegantly onto our front garden. I was on the way to the scan so now they know what is wrong and have me back in hospital. I await enlightenment and some sort of hope that they can get my legs back. Till then it's lots of close holding up by Stewart and Joe and warm hugs and kisses. I can feel those at least. Will keep updating with news.

Friday, January 7, 2011

Hippy, hippy shake

Here we go, new year, new symptoms. Not good I fear. For the last few days I have been tossing and turning in bed and staggering about during the day. No this is not due to the one night break at Ynyshyr Hall in Wales we enjoyed on Wednesday/Thursday. We couldn't afford the full two day jobby but enjoyed our one day of hedonistic heaven in one of the most beautiful spots on earth, imbibed the complementary sherry and the de rigeur aperitif, various wines with the Michelin starred utterly delicious dinner etc. But no my staggering is not due to the booze or my tossing and turning to the four poster, sinkingly soft bed. I have horrible aching pains across my pelvis and hips and down into my thighs and my legs have gone all shaky and sort of numb. Not good signs, in fact classic signs of spinal compression and impending no useful legs or rude, toilet bits doom.

I am due a scan on Monday which will look at me very closely and I have told my doctor what is happening so I suspect next week may see, not a visit to the new twins as planned but another week or so of visits to my best friend the radiation machine. That and the dreaded sea squid; thank goodness I got the pressed fois gras with beetroot mousse in, in Wales, before the cancer menu recommences. It was perhaps the best starter I have ever tasted, and I have had a few in my time. It's the endings I find I am not so good at.

Saturday, January 1, 2011

Prime time

2011 is a prime number and I don't like them, somebody has made up a name for such irrationality: Perittosarithmosphobia, and I have a mild case of it, nowhere near as strong as my arachnophobia which is firing up at the moment as our Christmas tree is doing that curling downwards thing that they do after a couple of weeks in the corner by the radiator, looks for all the world like a large collection of tarantulas. It will have to go.

I checked whether 2011 was a prime and discovered that I was born in a prime year too but that none of my children or their children were. Must be some significance there for a perittosarithmosphobic. The whole Happy New Year thing is weird for me anyway but we had a lovely evening doing absolutely nothing and having met Max and Charlie now there is a great potential for happiness in 2011, added to Harry's wide eyed look and Danny's cheeky, grinning shrugs. They are a handful though, literally so we will be going back very soon to lend our old hands and keep our mouths firmly shut about funny French ways (don't take them out for a month..sacre bleu!).

As for resolutions just two for me: stay alive and don't buy anymore cushions. Happy 2011 everyone and may it be a prime time for you all.