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.



  1. Oh my, Jean, what a horrific experience... likening it to a while water rafting trip - pure genius. I still breathe a little raggedy from reading it. Sounds like we nearly lost you altogether; blessings from the Pacific Ocean.

  2. Thank you so much for sharing that story. You continue to amaze me.

  3. Truly gripping reading. You and your family are amazing. Enjoy every minute of life - it's so very precious.

  4. Jean
    I have been thinking about you. What a grim tale...sending you lots of love

  5. In a word - harrowing. Lots of love to you, Stewart and all the gang.
    ps. Jess will make a fabulous 'next Camilla B', though maybe with less colourful headgear!

  6. 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.