Its a bit sickening

I am out! Last drip of liquid went in at about 9.30 and I was home in my own bed by 10.15. Gorgeous proper sleep for eight hours, on and off of course.

The sickness hit yesterday morning, for me it wasn't the low or even high level constant nausea I was expecting but a quick unmistakable flutter and then the full monty. The last time was about 3.00pm yesterday so maybe I will be free today, keep getting the odd twinge but so far so good. Stewart was there for the 3.00pm performance and so knows the speed it comes on with etc.

He is no stranger to my vomit of course after 41 years and 352 days of marriage and in fact it probably sealed our fate about 45 years ago. It's hard to believe now but both of us were athletes, he was county champion at hurdles and I was at 100 metres. The first time he took me anywhere, and it was before we were "going out" as such. he offered to give me a lift to the athletics track for training. He wasn't a regular there but was trying to get fit after a lay off and a time of beer swilling late teens over-indulgence. I hadn't warned him about my problem. You see I could run as fast as the wind for 100 metres (well it was yards in those days) but that was my lot and I was inevitably sick after a few sprints. So on our first time out together as he loped over to me after his training stint, I was just at my lowest ebb and whoosh out it all came over his nice green spikes. Not a good start you might think but I clearly made an impression as he asked me out well and truly properly when he dropped me back home. I say well and truly properly I had up to that point been wooed by others in cinema backrows where I had probably paid for my own seat, or from time to time on park benches. This was an invitation out to lunch, proper posh and I seem to remember he brought me flowers.

The downside was his car which didn't have much in the way of brakes and the seats weren't fitted well. As I got in trying to look up to a lunch date (I was very young!). The seat fell backwards and I was left flailing about legs akimbo. How could a man resist such elegance and composure. He used to tell me he loved me for my lack of sophistication, good job really.

Three years later, readers I married him.

Pink pee

After all the bed getting was easy, half an hour in the day room (I may try to go there at night to see if it morphs into anything more exciting) and then my bed was ready. It's in a six bed ward and very different from the rooms I had in Perigueux and Dresden. Most noticeable is that there only seem to be three loos and no shower for the whole ward and that is not just my bit, there are chaps over the corridor and a row of single room sans loo. So I have nipped in quickly this morning and done my at the sink five minutes wonder wash which includes hair at the moment and put on a bit of lippy.

At the moment quite attractively my lips match my pee. It's a very fetching shade of what my friend, Julie, would call granny's pink, which is appropriate. This is as a result of a Tom and Jerry sized joke needle full of very bright pink stuff that was injected into my arm last night, it was the dox bit of the dox/ifos partnership. Ifos going in now and for rest of day and night, along with things to stop me feeling sick, things to protect my bladder as Ifos is not bladder friendly and steroids to help me in my 2012 Olympic ambitions I presume.

So far I feel OK, long way to go I know, worst thing so far is cricking my neck to write this on one of those 'let me relieve you of 10 quid so you can watch crap' media centres that hang threateningly over every bed.

Have just heard the bed manager telling two people they have a bed and three they don't. She went passed the end of the ward and I heard her say how much she hates doing that. There has got to be a better way. I was quite snug in my bed last night having pulled the curtains round me to make my own little cocoon.

So far then experience can be summed up as bedded, pink and potentially smelly, let's see what today brings!

Letter to the Editor and bed news

The Bed Co-ordinator who was of course very nice, even at 7.30 on a Monday morning, just called and I will have a bed. Not straight away, I will have to wait in the day room while they "shunt" things round but sometime today I will get to lay claim to my own piece of furniture. So the warfare begins.

On a similar note, I have dashed off a letter to The Times which I have copied below. Let battle commence!

Sir

Your leader of 6 February called on the main political parties to tackle reform in the NHS. As an erstwhile Senior Manager of an NHS organisation and chair of an NHS Trust, I couldn’t agree with you more. I now have a rare form of cancer which is terminal and have had care here in the UK, by chance in France and by choice in Germany. I now know, therefore, that what, where, when and how our European neighbours receive health services is so superior to what, where, when and how the NHS does it that it should be a shame to us all. The solutions are not simple. A former Secretary of State for Health once described it as trying to turn round a tanker, I wonder now if the tanker needs to be scrapped and a new model brought into play. Two ideas to start with, drawn from my recent experience and observations: firstly we should question very closely what we have gained since the Griffiths Report of the 1980s which introduced a tier of management into the NHS that has grown like Topsy due to more and more Government initiatives and which is unquestionably very expensive. There is no such tier across the channel and we have to ask ourselves what benefits it is delivering to patient care. Are these managers, all in my experience dedicated and hard working people, in fact getting in the way of the quality our neighbours enjoy by soaking up precious resources and spending time and energy in saving money that in fact desperately needs to be spent on front-line services? Secondly as a nation we have to stop thinking that high quality healthcare is some sort of God given right which we only have to pay peanuts for; we need to grow up and dig deeper into our own pockets just as they do in Avignon, Aachen and I presume Amsterdam. In a nutshell we need to pay more bucks and get more bangs, scans and good old fashioned patient care from every single one of them.

Jean Trainor
Deputy Chief Executive, NHS Confederation 1986 -1998
Chair, South Birmingham Mental Health Trust 1998 – 2002
Vice-Chair, South Birmingham Primary Care Trust 2002-2006

Lies, damned lies and statistics

Lot of interesting emails this morning from the American leiomyosarcoma group, who are, in my view, leading the way on getting recognition and meaningful research into this pesky disease, and they are all unpaid and fighting the b*****d thing themselves. There were lots of statistics about survival rates which don't make comfortable reading and are mighty confusing for a person like me who took three goes to get maths O Level and then only got a Grade 6; mind you my teacher was Miss Jacob and believe you me leiomyosarcoma is marginally preferable to a lesson from her.

I think the very best statistical twist I can put on things is that - with my type of leio, ie one of the worst, and the length of gap between primary discovery (even though that was at least 14 months late thanks to very poor doctoring) and secondaries emerging, not good in my case - my chances of surviving for five years are about 2%, not the best odds! I read other articles which suggest that if you have aggressive surgery, which I have, your chances, if you are vaguely like me, go up to 18% but my doctors say otherwise. The chemo I will start tomorrow, if the bed stats are in my favour, will only have about a 20% chance of working and that is not for a cure but for giving me a few more years.

You may all be getting very depressed by now and I am sorry, but Pollyanna here would like to point out that I only had about a 5 in 6.6 billion chance of getting this thing, where I got it, in the first place; aren't I the lucky one! I have a daughter who was conceived while I was on the pill and breast-feeding; and Stewart had a very bad back that month which restricted conceiving opportunities down to one in 30 if you get my drift. Miss Jacob didn't terrify enough skills into me to work out the odds there but they are teeny weeny. Finally the other day in Maumont the weather forecast said we had a 20% chance of snow and we got the worst fall in decades and were snowed in for days; down in the valley they were basking in winter sunshine.

So I know my chances of seeing 2015 and beyond are probably less than winning the lottery, a lot less in my case as I don't buy a ticket. But there are always winners and statistically I could be the one with the big grin and hopefully all my own teeth, saying it won't change my life and you can be pretty sure statistically that I will be lying through self same teeth, false or otherwise.

Don't know if I will have a bed tomorrow and don't know if the bed will have wifi. in fact don't know anything except that I will post news when I can.

Cooking up a storm

I have threatened to write a regular restaurant review marked on opportunities to forget cancer amongst other things and so far have only done one. I could have waxed lyrical about the meal we had on the way back from France because unexpectedly (the hotel doesn't appear in any good food guides) it was fantastic. It was in a posh manor house built by an antiques dealer for his mistress, very acceptable wages of sin in my opinion, as long as he wasn't as antique as his wares. I had scrummy ris de veau (veal sweetbreads)and lovely flaky turbot served with risotto and winter veg all in a champagne sauce, well why not?. I didn't turn down the cheese and ended up with a grand marnier soaked pud as that is the local home brew. We splashed out on a good bottle of red and there were enough other tables occupied to give us plenty of opportunities to speculate and, dare I say it, bitch about our fellow diners, our favourite occupation.

Nothing like the meal we had last night, although fish did feature in it, but I can truthfully say our fellow diners were a scream and I didn't have time to think about chemo or cancer for a second. We had Harry and Danny overnight and Harry was "very exciting" about it. I had promised him his favourite tea so could be observed frying fish fingers, boiling spuds for mash and microwaving peas; oh and mixing Bisto, aah Bisto, for gravy because Harry likes gravy on his fish fingers and Danny couldn't care less what he eats as long as there is lots of it. I had clearly forgotten what it is like to cook for kids who are spreading toys at your feet and demanding to "help" because I was also cooking our slightly superior version of the menu, hake, mash, peas and parsley sauce and I almost lost control of the whole thing. I used to do this every night for us and four kids.. or was that Stewart? He does claim to have done all the cooking. In the middle of it all Jess called to make sure Danny hadn't maimed himself again and there were two calls from recorded voices congratulating me on being chosen for I don't know what as I threw the phone across the kitchen.

Harry loved every mouthful and kept showing me the gravy on his fish fingers with great relish; so it was all worthwhile and I managed to retain enough post-op, pre-chemo energy to build his train set, give him an illegal bath and read the next chapter of Alice in Wonderland before getting him into bed, having in between, straightjacketed Danny into his sleeping suit and tapped his back till he went to sleep.

Of course I could not help but reflect that next weekend I am not likely to be able to be such a proactive Nan and Harry did bring it all back to mind when he asked me why my hair was going to fall out - his Mom is preparing him and anyway he had been giving me marks out of 10 for my headwrapping skills; we voted the purple one best, so expect to see that on parade very shortly. Harry clearly thinks I am clueless when it comes to medicines as he has had lots of medicine and he has a lovely head of hair. I said mine was very, very special and anyway what does he know - he like gravy with fish fingers!

Bedtime or not?

OK I know I am beginning to be boring about the health service and its failings. Let me just say that in my house, when I was being brought up, devotion to the NHS was the only religion we had. If I count back I think I was probably conceived the day it came into being as I was born about 40 weeks after. My Dad probably felt like celebrating although I am not sure Mom was so keen to put the new service to to the test. I brought my kids up to worship the NHS too and let's face it apart from giving them free care whenever they were ill, free hearing and eye tests etc, it also gave me a good living and helped them through University, first houses, weddings etc.

But, and there is always bound to be a but, I have already written about how I think that the NHS has failed me in terms of diagnosing my cancer, how I am saddened and ashamed of how it treats vulnerable people eg keeping them waiting for four and a half hours to get a bed; but now the letter I have come home to gives me further cause for shame and frustration. It is the letter telling me that I have a provisional date for chemotherapy treatment, 8 February. It tells me shortly that I will be telephoned before 8.00am that morning to say whether a bed is available for me. It goes on to say that there are times when beds are not available on the day planned but that I should be assured that every effort will be made to admit me on the next suitable day. However for some types of treatment they have a very high demand for beds so it may not be the following day. I am asked very particularly to be near a phone that morning (from when they do not say, 7.00 maybe or earlier?).

There is nothing in the letter that tells me what to expect from chemotherapy, where to go if I am lucky enough to have a bed and what to bring with me. It does tell me that on the day my treatment is completed I should wait in the patient day room to be collected, ie get out of my provisional bed as quickly as possible.

So why am I upset by this? Well it just seems insensitive in the extreme, it shows no recognition of the trauma and uncertainty of being in my position and readying myself for some very unpleasant treatment; it makes me feel like an inconvenience, a bed user not a person. It gives me no information and offers me no help. It is also appallingly badly written it tells me that I will be admitted it she is able to confirm a bed is available not if one is. It also says you not your telephone number is ... and fails to cross out the option which says they don't have my telephone number so ends up being confusing.

It is sent from someone called a bed/patient co-ordinator and I wonder how much she is paid and wouldn't the money be better spent on more beds. And yes I know enough about the NHS to understand it's not a question of a piece of furniture and a pillow and some sheets but all the staff and infrastructure that goes with it but still I wonder and I am certain that even if this person is worth what we pay her, she should be trained in how to write to terminally ill people in a more sensitive and caring way and to proof read.

It will be interesting to see, if I am allowed a bed, if it will be ready for me when I get there; if not expect more ire.

Going back

We are preparing to go back to the UK again, packing up the clothes we never wore but leaving the books that we have read (Me- The Children's Book by A S Byatt: interesting idea, very literary, started slowly, got very gripping in the middle and then slowed down again towards the end, generally I enjoyed it; A change in altitude by Anita Shreve: enjoyable, ripped through it and was absorbed, but I know I will forget what it was about very quickly; Noah's Compass by Anne Tyler; bit the same really, love both Shreve and Tyler and always read their new books but would struggle to tell you what any were about after about 6 weeks; that's probably more down to my psyche than their skill however. We are now filling this house with books and running out of space just as we have in home no 1.

I always hate to leave, it's something about the peace here that we can't reproduce in Birmingham, even if we leave the telly locked away upstairs and sally forth into the countryside as often as we can. Of course this time, as we did last time, we are packing our elephant to travel with us and wondering when next we will return.

I plan to attempt a return between chemo refills but am not sure if I will feel up to the journey. In Spring the wild flowers come out including the orchids, that we now know how to identify as an orchid expert came to stay in the hamlet a couple of years ago, so we will definitely try to make it over in April if not before.

But taking each day at a time, yesterday we had wild boar with notre famille francais, hunted on their own land but not by them, fantastic it was, as was the gooey cheese and the melt-in-the mouth lemon tart (two slices!). Tomorrow night we stop off just south of Paris in a chateau and have our last pre-chemo treat. It's a good life and one I am anxious not to leave before I am good and ready.