Thursday 2 January 2014

I haven't posted for nearly a year, because in many ways not much has changed - more than 15 months have been eaten up with worrying abut Catherine's stomach disorder. After two gastroscopies, a capsule endoscopy, MRI scan, blood tests, barium test, manometry, a series of diet and drug treatments, she is still having nausea, fullness and acid reflux every day with no clear diagnosis or solution evident. We seem to have tried everything from cider vinegar to acupuncture, antacids and PPIs, exercising and not exercising, chiropractic, cyclizine, motility medicines, going dairy-free... a gluten-free diet helps the coeliac condition but not the stomach. I still think the whole thing was caused and is perpetuated by stress and worry, and she doesn't. Even if I'm right, I don't know how to ease the symptoms; how to break the cycle.

Meanwhile, going to Corrymeela was enlightening in some ways, difficult in others, as she felt so ill and homesick most of the time. Going to Sno-Mo special-needs camp in New Hampshire was "the best thing I've ever done" and as transformative as they say in their promotions. It confirmed her vocation to work with learning-disabled young people; her abilities and confidence blossomed; she finally decided after much agonising to pull out of BA languages altogether, even at Dublin, and reapply for Speech Sciences for 2014. Some of the photos show her unbelievably happy and beautiful, and she made deeper friendships than ever before. But what she called the "cold black lake" of depression was always lapping around her toes ready to pull her under again.  When I think of how she almost didn't go - that bleak night at Manchester airport, dead but for a handful of other passengersr and a display board until the first check-in staff appeared at 4am, and how she set off ill and desolate convinced she was going 3000 miles away from her only source of succour totally unfit to look after children when she couldn't look after herself... but she did go, and came back 12 weeks later shining with life. But still with her stomach problems.

Now it's a waiting time again, while she does several part-time jobs; hopes to hear from universities soon; hopes to be kept on at Waitrose; hopes for regular voluntary work at Peak School and New Mills Volunteer Centre; hopes without expectation for a definite diagnosis and treatment plan from her consultant Dr Koss.

Saturday 9 February 2013: C's ingrowing worry

Catmint has been in abeyance since New Year while we grind on with the cold and the snow, and Dave's latest injury (fell off his workbench and sprained a ligament in his right knee) and most of all with Catherine feeling ill every day - reflux, nausea, griping pains below, feeling painfully full after a couple of mouthfuls. She has endured another difficult procedure - gastroscopy - and must wait another couple of weeks to discuss the results with a doctor. Going back on a gluten-free and also dairy-free diet may well help. Feeling her stomach is blocked, though, is worrying and difficult to cope with, and the more she worries the worse it gets. She has found the label gastroparesis, but I just don't know which came first with her : the name or the symptoms - whether reading about the symptoms is enough to cement them into her brain and therefore body in a case of terminal addiction to medical websites, or whether it stems as she still thinks from injury to her stomach, and in either case how to break out of it. Mrs Harling thinks, and I think I feel it too, that it's the accumulated strain of last year taking it out on her gut. With C so much of a worrier, and very much on her own with no close friend around except me, who knows too much, her whole state of mind is like an ingrowing toenail.

But in the last few days there have been gleams of light - Corrymeela have asked her to go over for 3 weeks or so around 11 March; and meeting up with Natasha yesterday cheered everything up; and Camp America is definitely on for June. Also the decision to go g-f and dairy-free is something more positive to do than just worrying.

Tuesday 1 January 2013 Difficult Christmas

One good thing is the extra few minutes of daylight each day. Another is that M&S are keeping
Catherine on for another eight weeks, one of only four of the temporary Christmas staff to be chosen. This news raised her spirits one degree yesterday, for about two hours..
For the rest, she spends her time in a black and cheerless swamp, where it looks like she's wallowing but probably feels like she's silently drowning. This is because of the continuing acid reflux, which she is convinced she brought on herself by drinking vodka once in September. It started then and hasn't got better, so she is sure she has caused herself irreparable damage. I tell her that even if the vodka triggered it, it's her coeliac condition that perpetuates it, and produce the web pages that support this, but she won't accept this possibility and continues to beat herself up over what happened three months ago. I am sure the constant fretting and recrimination is making it feel a lot worse. It also says online that changing to a gluten-free diet will help cure the reflux, but this can take three months from diagnosis. She has only been gluten free for 10 days and probably hoped for instant improvement, so disappointment makes it feel worse again. Each of us thinks the other is in denial, and today she stopped talking to me so I must have been extra annoying.

Although it's been good to have Rik and Nicole here, all that seems to have happened over Christmas is worrying about Catherine. She spent most of her birthday in bed with a temperature, not for the first time. The raging industrial Christmas that beset the Merseyway shops, and the cold wet weather, and the dead time between bank holidays (which, from our point of view, puts beyond reach the doctors who might actually explain things properly to Catherine) make us think that the best thing we could do next year is go away somewhere sunny

Friday 14 December 2012

I am appalled to be 60, but have to get on with it now. In many ways I still feel that I am 16 and can't have learnt much in between. Two benefits are a senior railcard and the prospect of about £200 per month local government pension. Disadvantages are many and horrific and to do with sliding faster and faster away from the young people whose lives light up the world. But then it's up to me to stop sliding.

Rik sent a beautiful bunch of roses and lilies in an enormous box. Catherine gave me a lovely long M&S jumper and scarf, and took me Christmas shopping in Buxton. She steered me through several purchases and supplied other ideas, but soon I found I just couldn't cope with all the choices and people and prices and shops; I screwed up with panting breath and hammering heart and had to leave off shopping, and then the train was cancelled... Being screwed up over shopping was just stupid. Later this evening it was her turn to get upset with much better reason over feeling so ill for so long: nothing seems to control the stomach discomfort and the acid reflux that spoils every meal. Five days in, the gluten-free diet hasn't had any result yet, but she has unexpectedly got an appointment for endoscopy on 22 January - a lot earlier than we expected, but it means she must go back to eating gluten until she is tested, which may mean increasing the damage.

One positive development is her application to spend a few weeks at Corrymeela, a place I found inspirational back in 1977. They replied to her enquiry with only 3 - 4 days' delay, and sounded both nice and interested in her; at least, they encouraged her to complete her application, which she has done with care and thoughtfulness as usual.

Saturday 8 December 2012

Catherine has been waiting nearly four weeks for attention since the doctor told her the latest blood test showed positive for coeliac disease and she'd need an endoscopy to confirm it. Meanwhile she is meant to continue eating gluten-containing food so that the reactions they provoke will show up on the tests. But these foods produce the nausea, tummy pains, fatigue, bloating, etc that have been plaguing her for months. And she has just learnt - probably because I spent a good deal of Tuesday going in and out of the surgery and ringing them - that the waiting list is 14 weeks. So we have decided to go gluten free for a while and see if it makes a difference. Reading about it has confused me as to the difference between wheat intolerance and coeliac - some see them as a continuum as the symptoms are very similar, but apparently the causes and mechanisms are quite different. She seems to cope really well with work, considering how poorly she feels, though it's getting insanely busy, and from behind the till it seems that Christmas shopping aggravates everyone's worries and irritations, which get taken out on the sales assistants.But what gets Catherine down, besides feeling unwell, is the lack of definite plans for the months after the M&S job ends. So worries trundle on.

Sunday 19 November 2012

Catherine is well into her job at M&S, learning to work patiently and methodically under pressure from growing Christmas queues, and to withstand the fussy or supercilious shoppers and the one who regularly turns up at 5 to 6 for a full trolley shop and ends up at her till at 6pm while the other staff wait to lock up in a semicircle behind her... But I wish as much as she does that she didn't feel so ill for so much of the time. The M&S job will last till 5 January, but CSV haven't come up with a placement for after that, and though she does have several good ideas there is still the uncertainty, which has been nagging away for six months now and is bound to exacerbate the IBS symptoms. I think I perpetuate it too by joining in with the worrying.

Dave ruined a ramble today by losing his temper at Di when her dog tripped him up in a bog. He swore and refused to walk with her; I rounded on him ; he totally failed to understand that whatever the rights and wrongs of the case, shouting at people ruins everything and toleration holds us together. Though if it had been a child knocked over in the bog, I'd have been angry too. When I told Catherine later, she just laughed and said he probably deserved to fall in the bog.

Tuesday 23 October 2012 M&S

Catherine has been at M&S two days now, on induction, and loves it. Everything is planned and orderly; you have defined responsibilities and work within the limits; there are procedures for handling everything from frozen foods to complaints; there are policies on bag re-use, recycling and avoidance of waste; even the black stock-issue trousers are designed with loops for clipping your name-tag to and a pen-sized pocket for carrying your pen. What Dave would see as over-regulation and the death of initiative, Catherine welcomes for its sense of security. The training is full and systematic; everything has been thought of. There is always someone to ask when you  need advice, and they're happy to be asked. They welcomed her as part of the team right from the start; everyone is friendly, whether aged 17 or 70; she likes everything from the security checks to the eco-friendly waste disposal system to being able to get a cup of tea from the breakfast bar on arrival; in other words, she fits in well and gains poise and confidence all the time.

Saturday 20 October 2012 Shapira

The film maker Yoram Sabo, Andrea his agent/facilitator, and his cameraman, another Yoram, arrived from London about 10.30am. I'd been prowling for an hour and a half, straightening pictures, wiping table, sweeping leaves, not to speak of the spring cleaning Catherine and I inflicted on the whole of downstairs yesterday (about time too; the worst was realising that if I were a proper housewife I'd be doing it every week). I tried very hard to pretend the camera wasn't there and concentrate on the conversation, but in many places self-consciousness won, leaving me as incoherent as I feared I would be. I wasn't prepared for the questions to turn to my book and my relationship with my father, nor to The Sacred Mushroom and the Cross, and I didn't defend him nearly as well or clearly as I might.

But on the Shapira issue, it soon became clear that there is lots I - and JMA - didn't know about the man and his story, whereas Yoram is completely hooked on following up the leads, step by tiny step. Trouble is, they lead to more questions, not answers; eg where is he buried, and why don't we know - are his grandson Francois Perrault Harry, or his daughter Myriam Harry, hiding something?

Thursday 11 October 2012 CSV progress

Catherine's been to Birmingham for her CSV interview - at last, after applying in June and spending weeks fretting because she hadn't heard from them, except to be told each time she enquired that they would contact her in due course, ie fobbed off.

And now they say she's unlikely to get a placement until January. Despite this, she came back feeling a lot more positive, because now she can plan what else to do instead. The best idea seems to be to stop fretting over CSV until after Christmas and apply for a full-time short-term paid job, particularly with M&S, who are actually advertising for Christmas staff, and probably Debenham's, WHS or similar as well. Also, for the first time in 3 or 4 weeks she got through most of the day without feeling ill (we have now hit on food intolerance, as a possible cause of her chronic digestive problems, and need to check the idea out with a GP).

To update - she was offered the M&S job on the spot after a demanding interview - 29+ hours a week up to 5 January, which makes everything seem more positive.

Monday 10 September 2012 - a weekend of big walks

Two big walks have kept me outdoors during all daylight hours this weekend - a 26-mile challenge walk on Saturday across the Staffordshire Moorlands, followed by the Edale Skyline with Roy, Jill and Janet on Sunday. This is a classic 18-mile route from Hope, with stupendous views all around of green sweeping valleys and the distant march of hills. Drunk on the sunshiny breeze that moulds the skin; feeling long and lithe after so many hours' walking; feeling at one with the countryside and, for a change, with one's body...

Catherine spent Saturday evening serving 190 fish-and-chip meals at a wedding somewhere glamorous near Ludlow; then all Sunday doing burgers, hot dogs and mountains of chips at a family fun event + dog show in St Helens. "People kept buying sausages just to give their dogs. £2 a sausage - OK by us. One man, who was drunk, insisted he was 6' 5" tall and wanted to buy his height in hot dogs. He kept coming back trying to give us money but we wouldn't or couldn't serve him."

Thursday 30 August - an offer from Dublin

Catherine had an email from the CAO this morning saying they could offer her a place on French/Russian at Trinity College after all in the second round of selection.
For 12 hours she didn't know what to do. With my head in a tizz over things like CSV, Sheffield, deferment, etc., I had to go a walk before realising that yes of course she should go to Dublin either this year or next - it was the one place she really liked and to pass up the opportunity might be something she'd always regret. Dave felt the same.
But Catherine remained inexplicably, or stubbornly, non-communicative. She wouldn't phone TCD, wouldn't let me phone, wouldn't discuss, repeated only 'I haven't decided anything yet.' Only when we were driving to Rangers did it come out: 'I'm thinking to decline their offer.'
'WHY?'
'I don't know that I want to do that course any more. French and Russian - it doesn't lead anywhere, does it?'
I said it most definitely did - excellent preparation for teaching/speech therapy/anything communicative, etc; whereas a vocational degree such as Speech Pathology would have narrowed her choices too much too early. 'Oh. You've confused me again. Thanks a lot.'
I went back for her at 9pm prepared for more battles. But fortunately Sue, the leader, had delivered a good dose of common sense, and said exactly what Dave and I had said with the big advantage of not being her parent. C had let herself be sorted out after all and has now written to request a deferment, but is prepared to go this year if they don't grant it.

Sunday 19 August 2012 Mudburgers

After three days of silence from Skipton, where KK Catering are doing the Beacons Festival, there was an anguished text message at 3pm: 'I'm alive  but I want to come home so badly, likely to be late on Monday, as will be working until 2 or 3am again and hopefully leave cleaning till tomorrow.'

My reaction: (1) Oh no! When can I go and get her? To Skipton if necessary...
(2) Wash, food and drink to make you feel better, though sleep is what you mainly want...
(3) Surviving this means you can survive anything life throws at you.

Dave's reaction: 'Stop worrying. It won't do her any harm.' And a text to CA: 'Chin up. Mud doesn't harm you; it strengthens you.' She replied: 'Lol. Too true.'

Saturday 4 August - trying to wind up the PNFS business

D did write offering his services in any work that needed doing around Taylor House but forbore to point out that the computer system was unsecured, the ink and stationery supplies depleted, the membership list incomplete, the newsletter irregular, the Volunteers Handbook not yet updated... He was not surprised when Rogerson replied sweetly that, as they were in the fortunate position of having appointed two new Vice Chairmen, all the jobs at Taylor House were being well taken care of and, in view of past difficulties, it would be better not to take Dave up on his offer. Dave said 'There! That proves that all he has done to obstruct me was personal. They have broken the agreement made at the AGM that as I am a fit and proper person to be an officer I can continue being one.'
I said 'Then walk away. PNFS does not deserve you. Find something else to worry about.'
He said 'But I want to be membership secretary when Bill resigns next year. I'd be good at that.'
'No! Nobody will want you stirring things up again. You only want to get back at Rogerson.'
If only we could think of one stinging retort, he might leave it at that. Short of telling all the officers 'That's what comes of calling the chairman a liar,' which might cause a lawsuit, I haven't thought of anything suitable yet.
D spent all of next day as well chewing it over, with suggestions ranging from applying anonymously to be a volunteer at Taylor House, to slipping in there one evening and leaving a virus on the computer. I tell him that by letting Rogerson's wiliness get under his skin he is letting him win. Why can't he just write and tell him 'I have no wish to be associated with an organisation run on lines of deceit, vindictiveness and mismanagement. The key is available for collection by arrangement' and leave it at that?
Pride, that's why.

Saturday 28 July 2012 - PNFS again

We're off again. A letter from the trustees this morning informed Dave that as the LPC and officers meetings were to be combined, there was no longer a role for him on the LPC, therefore please return the keys. This peremptory demand was dressed up with compliments about the amount of work he had done for them, patronising till it dripped. The anger this engendered in Dave powered him for 12 miles non-stop over Bleaklow at a pace I could hardly keep up with. But now, turning to poison by feeding on itself, and by half a bottle of wine, the fury is turning against me for what he perceives as negativity. 'So you want me to hand back the keys, say nothing, roll over and let them kick me in the stomach?' I point out that walking away might be the most fitting and dignified way to treat an organisation he says he holds in such contempt. Whereas answering back would be likely to give Rogerson further reasons to present him as a troublemaker; none of the officers would support Dave as they would not want a return to the disputes of the winter; and he would end up doubly humiliated. D wants to provoke Rogerson into admitting he wants rid of him for purely personal reasons. I say that is obvious and he would gain nothing. On the other hand, D isn't the sort to walk away, and may not have much to lose by writing to the trustees offering his services in other capacities. Or, as I suggested, enquiring coldly and curtly whether they would have the courtesy to explain to him the reasons for the changes.

Monday 23 July 2012

Catherine has heard at last from Sheffield University, with an email saying they would be offering her a place after all. Family and friends all reacted wuth relief and congratulations, but Catherine seems underwhelmed. She absolutely does not want to go straight on to more studying and the prospect of more screwed-up social life, with its fevered campus expectations, in September, and is determined to spend 8 months with CSV, hopefully as teaching assistant or similar, where she is more likely to make a positive practical contribution to real people's lives. She is also talking of a year as au pair in America as well, but i think (and hope) that she will want to get on with something a bit more directional, ie degree/professional training, by next summer. Once the formal offer comes via UCAS, she will need to write to Sheffield about deferment. I haven't lost hope of TCD, though she seems to, and everything may yet change again.

Wednesday 11 July 2012

C has had to contend with blow after blow. First she was unexpectedly called in for her hernia operation on
Thursday 5 July, due to a cancellation. The op[ was quick and she was sent home at 2pm, feeling rather peculiar but with very little nausea. When the anaesthetic wore off the pains returned, in different parts of her belly and also down her leg, but so did her colour, appetite and argumentative attitude.

Then on Friday the IB results came out. She was nervy, but expectant. What nobody expected was that although she got 36 overall, an excellent mark, she only got 5 in each of her Highers. Disappointment floored her - that after two years' consistent hard work and high grades, and after beating her brains out since April to learn everything and after lasering all her learning and intellect into the exams themselves; not to speak of needing 6 in French for Sheffield and lord knows what else for Dublin, none of this effort or ability was reflected in the results. At least, that's how it felt - compared to most people's marks her 36 was a great result and it seemed peevish to be dismayed by it. She did feel better after talking to Geoff and Gillian on Monday - Gillian showed her the breakdown of marks, which showed she had only missed a 6 in both French and English by 3 or 4 marks; and Geoff said Sheffield were very likely to offer a place anyway, especially with the help of a letter from him pointing out her other achievements, and the standard of the IB compared to A-levels (36 would be translated as A* A* A A according to KWC). Whether they do or not, we are thinking about whether to apply for re-marks, in the hope of pushing up to a 6. It would be good to have her ability and hard work recognised, and maybe increase the chances of TCD after all, but sometimes C thinks it would be better to try and accept she got what she got and isn't as clever as she hoped she was; and I want to be sure I'm not pushing for a re-mark  out of vanity or wounded pride.

This body-blow came on top of the tiredness and aches and pains and general unwellness that have dogged her for weeks and the effect was to completely knock her out - a wall of fatigue falling on her each day. I didn't think this very surprising, but C just felt rotten and being told her blood count was clear and everything was down to stress only made things worse.

Saturday 30 June 2012

Catherine's on her second weekend away with KK Catering and blitzed by travelling, chips and chapattis - constantly in demand, fetching, carrying, serving, cleaning; new people, new customers, new places, cash, hot oil, hot water, salt'n'vinegar. Today they've been serving crepes and chapattis at Aston University, tomorrow it's fish and chips at Brighton; goodness knows when they'll get back or if she'll last the pace. I'd be less worried if she hadn't been feeling so ill this morning when I took her to Hazel Grove for a 6.30am start. But she likes the money and it isn't IB brainwork.

Our ladies choir concert at WB Uniting Church went really well for a change - helped along by a good turnout of friendly faces, and some compliments from Macclesfield MVC, and also because for all but one piece we felt confident enough to manage without copies. For me, I discovered that the top As and A flats were no trouble at all once I'd left off worrying about them. Also, when Dorian said at the interval, 'Judy, can I have a word?' I thought he was going to ask me not to attempt top soprano any more, but he said he was planning to compose a choral piece to celebrate the choir's 40th anniversary, and would I write the words?

Saturday 16 June 2012 - back from Ireland

C and I loved Ireland, but the weather made our 4-day trip hard work. She's been sleeping it off most of today. 

Tuesday we spent in Dublin mostly, looking round Trinity College and the city. The College looks very solid and eminent; maybe less desperately elitist than Oxbridge colleges though very hard to get into. Or maybe the postgraduate students showing us round were so friendly and down to earth that they made the whole place seem more welcoming. I can see why C dreams of going there, but she's not at all sure what to expect of last month's exams and knows Trinity may well remain a dream. As cities go, we liked Dublin too - there were crowds of other tourists of course, like us - or rather, not like us: mostly American - but it still seemed more spacious, less hurried and of a more manageable size than places like London or Manchester. We walked on the waterside paths, didn't do the Guinness tour, and took the bus to Wicklow.

Wicklow suited us just fine. It's a little town with a working harbour, a pebble beach, a golf course and some industry; unpretentious and not touristy; rather like Peel without the kippers and trippers. The main street is lined with small shops, making you think small-scale enterprise is coming back after all, back to the 1960s. But we were told it's a facade - the shopkeepers had agreed to keep their window displays going, rather than boarding them up, even though the doors were locked and the shelves empty, so as not to deter people from coming to the place altogether; the Irish economy is as dire as the media says it is. No wonder it felt so quiet and the people had plenty of time for us clumsy English visitors - the qualities we so liked about the place weren't altogether a blessing for it. 

We did some walking in the hills and by the sea, and would have liked to do a lot more, but we weren't equipped for the weather, got soaked to the skin both days, and never really dried out properly, as the hostel we were staying in was warm and cosy but didn't have enough space or radiators to cope - that's what made the trip rather hard work.

On Friday it was still raining, so we decided to go back to Dublin to find indoor things to do before catching our plane back to Manchester that evening. This amounted mainly to McDonald's, the Natural History Museum (old-fashioned; full of fossils and endearing but moth-eaten stuffed animals, and the information texts hadn't changed much since the 1950s either) and window shopping. Fortunately the rain eased off. 

We got back to find a hole in the lounge ceiling. A leak from the shower or bath had worked its way through the plaster board to stain the ceiling. Dave had prodded it with a screwdriver, and down it came. Again. 

And it's still raining. 

Monday 4 June 2012: Jubilee concert

Chapel-en-le-Frith Town Band, Male Voice Choir and Ladies Choir staged a concert in Chapel Memorial Park for the Queen's Diamond Jubilee. Cold, windy and nearly 3 hours long. We sang like mad, but people could only hear snatches, depending on the wind and where the (single) mike was pointing. The band improved over the course of the afternoon. At least they were audible, and looked the part. A surprising number of people stayed to listen, in their overcoats with thermos flasks and union jack flags - being stalwart and stoic and not letting the side down after seeing the thousands who lined the banks of the Thames yesterday in driving rain to watch the Royal Pageant. Catherine stayed all afternoon too, reading the Kindle and waiting for it to be over.  She said it would have been better to skip each choir's own inaudible items and stick to the joint items with the band, such as Rule Britannia and Jerusalem, which were really all the audience wanted to hear and wave their flags to. We liked the hot tea and Victoria sponge in the interval and tried hard to feel British but were just too cold - or perhaps that was part of it.

Friday 1 June 2012

The week in Majorca turned out to be a wonderful holiday and just what they needed after exams. It was sunny and hot but not too hot; busy enough to be cheerful but not too brash; cheap but not trashy; plenty to do but nothing they felt coerced into doing. The apartment was clean and simple; the transport arrangements worked without a hitch. The four stayed friends throughout, sometimes going round in twos, mostly going round together. They had a couple of beach days, hired a pedalo and swam in clear calm water; a boat trip to an island of lizards; a day at a water park and half a day in Palma. A revelation for Catherine: they went to a club for a foam party, made friends with "some really nice people who were Irish and students but not even drunk", and she surprised herself by enjoying it. It's a treat to see photos of the four girls, even Erika and Catherine, looking happy and relaxed. A week was just enough: less wouldn't have done the trick, but they were ready for home and tired by the travelling.
With unfortunate timing, the washing machine broke down and one of the guinea pigs keeled over dead this morning, but C intends to sleep rather than let either of those things worry her.