Monday, February 28, 2011

A man in every port

I am back in hospital! A great big, well about 3cm, hole opened up by the fancy portacath I had inserted just above my right boob. It was put in about four weeks ago to simplify the administration of Yondelis, the highly expensive sea squirt. I have decided not to have the chemo so it is pretty redundant and in fact not very pretty as said boob is bruised black and blue even after four weeks. The hole oozes vile caramel stuff, like yucky coloured gloss paint. You can see the actual tubing below the surface of the wound once it has been cleaned up.

This afternoon I went down to Dr McCafferty's world again, Ambulatory Care, to have the port taken out. He wasn't aware it was infected so called one of his colleagues to come and see me. Didn't catch his surname but his first name was Garth. Now McCafferty is not a bad catch himself, quite easy on the eye, very funny and a great conversationalist but dearie me, Garth! I can't remember if the cartoon hero of the 50s and 60s was a hunk but this one, my goodness me. He put that other famous doctor, George Clooney, in the shade, more real looking somehow. He examined me, pressed my boob and looked down into my eyes. The monitor that was measuring my blood pressure immediately shot up. He gave his advice, the wound would need a corrugated drain, not very romantic I know. He flashed me a smile and modestly went on his way.

McCafferty set about his task with Marvin Gaye singing in the background. He whipped the port out through the wound, painlessly, flushed it out, then applied the corrugated drain. It was just like a corrugated roof tile, or do you remember those cheap penny sweets, spearmint, pink, we had, again in the 60s? McCafferty had never done a corrugated drain before and was bemused by the safety pin that came with it. It was in a sterile pack and the penny sweet needed securing with something so he assumed that it had to be pinned through my skin. On reflection it could have been put there by whoever it is that is keeping a voodoo doll of me and using every opportunity to pierce and stab me. McCafferty asked if I need a local anaesthetic but as he was standing with the pin ready to go in, I rather unwisely said let's give it a go without. Well I tried to squeal softly but if you are ever in need of a pin shoved through your boob then say yes to the needle. He gave me a jab straight after and all was well.

We jabbered on through the whole procedure about people we knew in the NHS, the new hospital and the comparison between the French and the UK health systems. He also talked about my infections and he said that the speed that the urinary tract infection had come on and the severity of it, it was likely that I had had septaecemia. It now seems I will be in for a few days while I am on oral antibiotics. It's not just the wound, I also have a chest infection that can render me speechless (a great relief to some no doubt) and wheezy for hours. He said all these infections were probably a hang over from the aforesaid septaecemia.

When I do get home I will be crossing every digit I can, in fact I can easily cross all four fingers on each hand, and I will be calling on all the gods to ensure that we will have a longer stretch where we can adjust ourselves better to the new me.

Thursday, February 24, 2011

That time of year again

I can change my profile again, today is our 43rd wedding anniversary. I have got through another milestone and beaten the odds again. 43 may be a prime number and you all know I have a thing about primes. On Tuesday next week it will be my third son, Luke's, 31st birthday, another prime number but I have enough problems without developing a full blown prime number phobia. I blame our old friend, Rudy, who used to teach me telephone numbers by breaking them down into primes.

As I type the two most gorgeous twin boys in the whole wide world are grizzling in the background. They arrived for a visit from France yesterday and they are miraculously beautiful. This is their first time abroad, they are two months old and they are meeting a lot of their relations for the first time.

Two sets of lovely friends have just left after making me laugh all afternoon, and we have booked to go out to lunch with one set, Sue and Mick, a month from today, at a posh restaurant in Oxfordshire.

On Saturday we plan a big birthday celebration for Luke, when the whole family is together now, we add up to 16. So our feast will have to be eaten on laps (we have taken away our stretchy dining table to house my electric super comfortable hospital type bed). I will make a trifle; starters will be spring rolls, nems and some spicy skewered prawns made by the birthday boy; main course Beef Rendang made by Jess and Tom. Julie and Sam have bought wine and lovely smelly french cheese.

Now the babies are quietening down and there is a lovely golden twilight outside. I have a house full of flowers sent from friends.

I am a very happy long-married woman

Friday, February 18, 2011

White water rafting!

This is the full technicolour version of the last blog, so hold onto your hats.

I got home on Tuesday 11 February, unfortunately it was at about 5.45 in the evening by the time the transport got me back. So after all the local services had shut down for the day. We failed, therefore to make the vital link up with the local services, they had been round that afternoon but, of course I was caught in transit. A lovely evening was had as Jess, Tom , Harry and Danny came round. Harry and Danny dived into a new bag of dressing up clothes and other toy delights donated by their beloved Aunty Pat and Stewart hoisted them around on our splendid new hoist. We had our dinner, a lovely spicy lamb concoction and then set about sorting out the medication I needed only to find that we had the wrong dose of the injection I have to take for blood thinning and we did not know how much insulin I should be taking as that had got lost in the loop (I became temporarily diabetic due to the massive dose of steroids I was taking, all gone now thank goodness. I failed to test my blood for sugars as the machine I had was useless and felt a bit dumped by the services. We improvised.

We decided to try to get me from chair to hoist to bed, and succeeded second time around. Stewart washed me, and I will spare you the details of that.

Then at 4pm I burst into tears, it suddenly hit me that I was paralysed, would never be able to move my own legs again, I was doubly incontinent. I could never go upstairs in my own house again. We would never be able to go to our house in France again, far too many stairs, and you all know how much we love that house.

The care I had received on Bournville ward in the cancer centre was second to none, they all became my friends and the treatment was excellent in every way but one (in fact it gave me great comfort that if the worst came to the worst and I had to die in the hospital rather than at home or in the hospice - sorry can't help but think a la Henry Higgns and Eliza Doolittle: in hospital, home and hospice, hurricanes hardly happen. The one exception to the excellence and I didn't particularly expect the nurses to do it, no-one ever talked to me about the paralysis and what it meant for me and my life hereafter.

Stewart came over and I wept and wept and wept. Once I could talk again and was calmer, I said to him: we have been dealing with this dreadful blow and we have coped magnificently in our different ways. He had been brave and then set about investigating every disability aid available, buying us our sooper- dooper new frog shaped, wheelchair friendly car and staying up till the early hours moving the furniture. I had been brave and then bizarrely and perfectly happily started planning my funeral (all done now in my head) and checking my will.

So we set about what needed to be done now about all the medication and tying into the local services. I found that all this cathartic crying has stripped me of something. I had to write everything down step by step. Have breakfast, the next step is test blood sugar and I know my machine is useless, so ask Penny over the road goes down. Stewart pops over the road and she comes like an angel in disguise, gives me the test and the lovely simple reading. I probably look a bit red-eyed but she doesn't mention it. Later I find typing a simple email difficult, very very slow. The carers are coming in at 8pm, they arrive exactly on time and do a beautiful job and I know that is all going to be well in that department. I am out in my wheelchair. Luckily the District Nurse has called and will come round at 11pm. That goes well but again I have to be very precise about what she is saying and write everything down rather manically. We have lunch and Stewart decides to pop down the shops. He is out for about 15 minutes, the GP calls and I discuss the medication I need and book a visit for the next day, as the nurse had advised me. Our friend Mick phones we discuss a visit, Stewart phones to check I am OK.

Then all hell breaks loose. A urinary infection I apparently had been harbouring sends me into a completely confused and delirious spin. What a day to choose to have one of those. I have heard about these things but never imagined it could be as bad as this. Basically I moved into a state where I was sinking into my last breath and dying through all sorts of terrifying images, including turning into a skeleton with my skull whizzing around. Then I was granted one more breath and rose painfully back to life. I was clearly also having panic attacks and hyperventilating, Jess tells me I turned blue at one point.

Stewart came home shortly to find a mad woman who told him that she had died and come back to life. Jess rushed over as she had called the house to check how I was, they called all the frontline services and finally 999. Stewart tells me that it was like watching someone have contractions, and he should know.

The district nurse and the on-call doctor both told me I probably had a urinary tract infection, I thought they were mad, no I was dying and living, dying and living. Stewart tried to get me to have a dextrose tablet thinking I might be hypo and to take the antibiotics that the Dr had prescribed but I flatly refused and thought they would help to kill me. Every time Stewart or Jess tried to stop me flayling about or even tried to hug me, I would wrestle them away. Anyway I get shunted off to A and E. In a moment of lucidity I asked what is best to control a panic attack and I insist they take me to Bournville Ward, although they are not allowed it has to be A and E. I ask if I can have a sedative, they say not untill I have been assesed.

Then the illusions got worse and worse. Prior to this as I died I had to keep shouting out I love you, I love you, I love you, over and over again. As I descended to my last breaths I composed my features into a smile so I would die looking happy. I muttered about the funeral arrangements I had started to make. On the way back up to life, I started by shouting out breathe, breathe, swallow over and over again and then as I came back I shouted my name hundreds of times, Stewart's name, all the kids and grandkids, then things in the room. All so I could check my brain was back in full working order. When I was seeing myself as a skeleton I was whizzing my head around and grinding my teeth.

As it worsened in A and E, the whole dying and coming back to life became a perpetual nightmare. I strangely thought that I would rot in my wheelchair and that then the wheelchair would rot and then the whole world would have to rot. This lead me to believe that I had to get everyone to breathe at the same time, so I was bellowing to everyone in A and E that they must breathe now. I refused to answer the doctor's questions: what day is it? Who is the prime minister? I had accused her of being a nurse, well she was wearing dark blue, Jess told me I was undoing decades of good work fighting against gender stereotyping.

At this point I decided I had to go through the whole of my life again, presumably to reach some sort of end. Unfortunately I missed out my childhood and moved straight to my relationship with Stewart, I was shouting loudly all sorts of sexy invitations to him until he wisely got me off the subject.

I then decide I would go along with all they were doing because they hadn't got a clue, I think I became quieter and more co-operative.

Jess had been contacting Bournville Ward and insisting to the Emergency Doctor that I be taken there, they also managed to get a sedative shot into me.

I ended up eventually on Bournville sans hallucinations but very, very groggy. Luckily they had a sidebay free, which meant Stewart could stay with me all night. Jess came back the next day to relieve him and we had a lovely time talking about the family, her ambitions: she wants to become Camilla Batmangelidh (sp?).

When Stewart got back I got him to tell me what had happened from his point of view, and gradually pieced it all together into some sort of reality. I gradually started to feel less whoozy.

I was moved back to the main ward and surprised the patients and staff that I had returned so quickly. The doctor came, luckily the lovely one. I asked if what had happened was symptommatic of a urinary tract infection and she said absolutely. I asked could I have a brain scan as I was worried it might have gone to my brain.

That happened the next day, dead simple CT scan. They found no sign of mets but a small, fresh brain bleed caused by all the thrashing about. As I was taking blood thinning medication they had to be doubly careful.

I stayed in for 5 days, a further scan on the 5th day showed shrinkage of the bleed and they were less worried. I still nearly didn't make it out and had to discharge myself as inflammatory markers in my blood were high and had grown quite dramatically. All they wanted to do was watch me for one more night - I had heard that before - and give me a course of the same antibiotics. I said we would do that better at home as Stewart would be watching me like a hawk.

So home I went, ready to enjoy the rest of my life. Yesterday we had a fantastic day with Jess and Stewart- he went off and did his own shopping. Lunch at Wagamama's, shopping till Jess dropped in John Lewis and Marks and Spencers. Today was Waitrose, a very practical meeting with Physios and OTs, I am going to do upper body strength exercises and they will get me referred to the lymphoedema service. Denise, our good friend came round for a chat and we have just had pork belly for dinner. So on with the rest of my life and no more white water rafting please.


Monday, February 14, 2011

Keep watching

Sorry folks won't be able to update the blog until Wednesday at the earliest now. Quick resume so you know the jist.

Went home last Wednesday, all fine
Thursday developed dreadful urinary infection, delirium, total madness
Back in hospital
Friday whoozy but better
Had ct scan on brain, no mets but showed recent bleed caused by urinary madness
They need to observe for 5 days
If I become confused they operate- very simple bit of black and deckering (drilling)

All a bit dramatic and it's a good job I have a good book on the go: Sophie"s Choice. Not a cheery tale I know but I am loving every minute of it

Last night we had a party on the ward for our friend Chris and so I am making the best of a bad job as ever.

Friday, February 11, 2011

Watch this space

Have promised a blog update. Bear with me it will be posted by Monday.

I am fine

Watch this space

Have promised a blog update. Bear with me it will be posted by Monday.

I am fine

Monday, February 7, 2011

I nearly had my skirt on and was out the door

Washed, packed up, all in place then they found some blood in my poo. Poo indeed.

Seems I've had too much laxative and too much blood thinner and so I have to stay, hopefully only till tomorrow.

We will get there

Sunday, February 6, 2011

I used to...

I used to run like the wind, I can still feel the spiky grass between my toes, the rush to the tape

I used to go like a train, dance like a demon

I have shopped till I dropped, I've mopped, plopped and slopped

The books, the laughs, the winces, the wit, the love, the lust, the politics, the dreams

They happen in my head and heart not my legs. They still do.

Escape still looks god for tomorrow.

Wednesday, February 2, 2011

Getting out

Today we have a meeting: me, Stewart, Jo the OT manager, Monica the discharge manager and Maureen, the social worker. All on first name terms here. I am no stranger to meetings. I have asked for criteria, I think I have my head round it, and if I don' t god help any other poor bugger struggling with this.

It is an assessment of what I need. A plan will emerge and budgets will be discussed. Trouble is they have to manage me and I have set them a deadline of Friday to be out, they pale, they twitch, so they should.

Not only that they have my political standpoint to reckon with and I have never been good at compromising that, nor will I be. It comes down to whether you are covered by the social or the health. Social you pay, health you don't. I get Disabled Living Allowance now so I am happy to give them that. Beyond that I am not happy.

You see I believe that even Georgie boy Osborne, or dodgy David Cameron ( god you'd never go out with them would you?) with all of their millions should not have to pay for care when they become immobile and doubly incontinent. As long as we have screwed them for every penny of tax on exactly the same terms that we pay, no fancy accountants, no respectable fiddles. Not going to happen I know but we can dream.

So what do I need, simple really, I want Stewart to become the fastest hoister in the west, I don't want to have to wait for some other bugger to turn up if I want to go on the bed or into a chair. I want a daily health check on my vitals and my pipes. Frankly I think we could do the rest but I may give into a personal comfort visit a day just so Stewart doesn't end up doing all their jobs for them. Apart from that we may get a cleaner but that was always the case and then there's the asses milk and good food guides. We will cover those. Don't think the rest will break the bank and if they haven't got it sorted by Friday, I will, it's what I do. To get out we will get a car with ramp and winch, oh how sexy.

And to help matters I find I am quite whizzo in a wheelchair. I was tazzing round the ward yesterday and my famed lack of ability to do a three point turn is a myth engendered by others.

Tuesday, February 1, 2011

Taste the difference

I am carving my own gastronomic fate here in Bourneville ward where there is no chocolate. You will have gathered that food plays a big part in my life as I have eulogised over the best gastronomy of France, Italy, Wales even. When I got the death sentence I took it on myself to make every meal, a meal to remember; quite a challenge for those around me. I have planned trips, scoured guides. Thank goodness the chemo didn't alter my taste buds and thank goodness my nearest and dearest like to eat too. And we are catholic in our tastes so Dad's Lane fish and chips and the pensioners' egg and chip special up the co-op feature in my drooling.

Being in hospital does not suit these foodie passions one little bit so I am on hunger strike from their slop. I have tried to down it, tried to make the best of a bad job, but it's no good, it's not worth the candle. I don't have a massive appetite as I am hardly using up loads of calories so my needs are small in size but huge in expectations.

I eat their breakfast, a few oranges and a weetabix. Then whoever is visiting at two is tasked with bringing me the loveliest, freshest, fullest flavour bursting sandwich they can find from Pret or Philpotts. Ok I will do with M and S at a push. Trouble is they all have busy lives and Stewart just doesn' t have a sandwich instinct unless its ham or cheese with none of that filthy mayo. I adore filthy mayo mixed with any other fancy filth you can throw at it. Luke is my best bet if he can get his act together.

Then for dinner I want more small explosions of flavour. Last night I ordered two perfect lamb chops, just on the turn re bloodiness and with foccacio bread. This was from Stewart and he managed to pull it off with magnificence. I am sure I would have overcooked them in his place but these were superb, drool, drool. I was grunting orgasmically all the way through.

I have read about this capsule eating they go in for in New York, Paris etc when for a ridiculous amount of rich persons money they can order perfect little meals that arrive by courier at exactly the right moment. Yes this is what we want. Why can't I pick up a menu from one of my favourite eateries, choose a bit here and a bit there and have it delivered to Bournville ward. An opening here for someone although I am not sure the Market is huge.

So my taste buds are working in anticipation of that sarnie and for tonight I have asked Stewart to rustle up more foccacio, half to mop up a small tomato salad and the other half slathered in the muit-cuit fois gras entiere that we just happen to have in the fridge, followed by raspberry jelly, low sugar of course. Bon appetit.