Friday, 29 April 2011

Jam & Jerusalem

What a wonderful day. I was glued to the wedding and then before we knew it the house and garden were full of people all eager for a cream tea. We didn't run out thank goodness and, even better, the rain didn't arrive until the crowd had thinned a little and there was room for everyone back inside. Just watched it all again!

Thursday, 28 April 2011

Bright eyed and bushy tailed

It could have been the steroids that I took in preparation for the chemo that didn't happen or the walk to the neighbouring village yesterday - but whatever the cause I slept incredibly deeply and woke at 6 am this morning so rose early to complete lots of tasks before breakfast. Thanks for the messages of support last night. Much appreciated.

One little bit of excitement last night. My Google alert turned up a secondhand Romahome R30 coming into a Reading dealership soon. I bet it will be too expensive - I want something with scratches on already.

Today's agenda: networking meeting this morning followed by a bit of a tidy up and then scone-making in preparation for tomorrow. I've put up a notice outside saying that we're serving free cream teas on royal wedding day from 2pm until the ingredients run out. All welcome.

Wednesday, 27 April 2011

Small blip

It was a bank holiday so I couldn't have my blood test done on Monday, so instead it had to be yesterday. That meant I couldn't phone to check the results before we got up early and left for the nearby town to reach it in time for an early start on the chemo today.

Unfortunately my neutrophils weren't yet up to scratch so my chemo has been delayed by a week. Hubby had already left to spend a day in the wood so he returned immediately to pick me up. I had to get more folic acid to tide me over, book another blood test for next week, reschedule the PET scan with the consultant's secretary and change the following consultant's appointment with the Macmillan Unit. We have a holiday booked for a week away so it means that appointment is now in the middle of June. My how times flies when you're on chemo!

It's funny how little things bring me down and all that changing of the schedule actually drove me to tears in the chemo ward and I'm still feeling a bit wobbly. I suspect it's because I don't sleep to well the night before the chemo and I was all geared up to it being the last dose. The wonderful health care assistant - who I'm sure really runs the ward - was lovely and so sympathetic. They really are a lovely bunch on the chemo ward.

Anyway, I've picked myself up, dusted myself down and in a minute I'm going to walk to the next village, pick up some clotted cream and cadge a lift back with hubby who is doing a job there for his mum. It's my intention to serve cream teas to anyone who wants them and passes by the house on Friday afternoon. So you'll all invited. If the weather's not too good and I haven't set out my stall, just ring the bell.

Tuesday, 26 April 2011


Several people have asked me where I am in the grand scheme of chemotherapy/treatment - so here's an update.

Following the spectacular (50% reduction) result after the last couple of chemo cycles (normally 21 days apart) I've been given another two - they were going to stop at four. I had blood taken this morning in preparation for the final cycle tomorrow. Three weeks after that it's the (radioactive) PET scan, then a week after that an appointment with the consultant at which point he'll decide what next to do with me.

I'm bronzed, I still have hair (most people don't even noticed it's thinned) and the reaction of those who haven't seen me for a few months is one of complete and utter surprise, as they expect to meet someone who is bald, thin and unrecognisable. I have to admit that my anticipation of six chemo cycles would have come to exactly the same conclusion - however, for me, it is not the case. I guess I've been very lucky.

I have been asked to post photos but I would prefer not to do that here as I am attempting to keep this (as it's globally available) as anonymous as possible - hence the blurred one you can see. Sorry folks.

Monday, 25 April 2011

The dream comes nearer

Well, would you believe it, my ebay search has revealed a van just 10 minutes away, being sold by a couple who have had it for four years and have now fallen in love with south Devon and bough a static caravan. It's not terribly pretty and it's not a Romahome R30. It's a Renault but it does have all the facilities that we were after in the configuration I wanted them.

We went to take a look this morning. It's got four belted seats, fridge, ring and grill, shower and basin area and a loo. There's some rust here and there, particularly around some of the windows, but pretty is not what I'm worried about. The engine sounds good, it's got four new tyres, new batteries and no underbody rust that hubby could see. The only real reservation is the miles per gallon (about 24!) and the likelihood of the rust advancing, given that we want to store it in quite a damp atmosphere. So while we've decided to bid we'll put a low limit on the bid.

Someone's already put a bid on and exceeded the reserve. It's just a case of scheduling it into my intinerary and remembering to be online, ready, with finger poised at the right moment. And if I don't get it, then so be it - something else will turn up and it will probably be an even better bargain.

Postscript: decided over a delicious supper in the summer sunshine that it's a bit too old and we would like something more reliable.

Friday, 22 April 2011

Fruit sugars

Just when you think you've got the diet finely balanced, along comes another query: fruit sugars. So I Google it and find a wealth of conflicting advice. As a result I've now cut out eating large amounts of fruit in one go and am sticking to the odd piece here and there. One of the bits of advice I've been given is berries and apple if I must eat fruit. So, like the rest of my diet, I'm more or less adhering to it.

In preparation for St George's day tomorrow and the royal wedding next week, I'm flying a flag of St George and the Union flag as well as the red, white and blue bunting that I made at the time of the birth of our first child, on the Queen's official Jubilee Day. It's all looking very festive.

Wednesday, 20 April 2011

Sunshine and window cills

Went to see the consultant yesterday - I asked for the main man, and got him. He's scheduling the PET scan for the week commencing 23 May, leaving three weeks after the next chemo so that the body gets a chance to start whatever it's up to again. Then I'll see him again the day after the late May Bank Holiday when he'll decide what's next which will depend upon what's glowing during the PET.

Meanwhile we made an early raid on B&Q this morning (hubby gets a discount on a Wednesday due to his advanced years) so that I have the means to finish the decorating. I thought as the sun's going to be around all day again that window frames would be a wise choice. The kitchen window hasn't been painted since 1983!

Sunday, 17 April 2011

The R30

Friends suggested we visit the motorhomes exhibition at Peterborough this weekend. So in lovely sunshine and excellent company we toured acres of campervans; from the one-man right up to enormous homes complete with plush sofas, ensuite bathrooms and showers and bits of living space that cantilever out at the sides.

I found my ideal van - it's a Romahome R30 or Dimension - which is a short vehicle, a Citroen, but which has the four travelling seats as well as all the usual kit, including loo and shower room. The only problem is that they are obscenely expensive new and it appears quite rare. There are absolutely none on the market second hand apart from one which is overpriced and with a dealer. So I think it's definitely canvas in May and maybe July too - but at least I now know what I'm looking for.

Friday, 15 April 2011

Timing is everything

Yesterday I had a call from the PET scan people - that's the scan where they inject you with a radioisotope and ask you lie still for 20 minutes while you move in and out of a tunnel. Consultant 1 wanted me to have an appointment for a scan next week. The appointments clerk was slightly puzzled why I might be given a scan while I was still on a chemo regime - and so was I. I explained that these last two cycles had been added to the plan and that the copy of the registrar's letter detailing what had happened at our meeting two weeks ago had only reached me a couple of days previously. It was possible that Consultant 1 hadn't seen it when this appointment instruction was given. The appointments clerk - from the private company that operates the PET scan - agreed with me and went away to check with Consultant 1.

Sure enough today she rang back and said they wouldn't do the scan until I'd finished the chemo. Could it be that this is just the sort of confusion that wastes NHS money? If the clerk hadn't been on the ball and raised doubt and I hadn't jumped to the right conclusion, they'd have wasted the cost of a procedure purchased from a private provider and I would have received another dose of radioactivity to no purpose whatsoever. You really have to keep your wits about you when navigating the NHS jungle.

Thursday, 14 April 2011

Just tooooooooo big

We went to view the van this morning and it was fab, absolutely fab. But it was just too big and too low on the ground for the place we'd be storing it. It had only been used once so everything was brand spanking new as well. Well we've seen the ultimate - now we'll try to find something more sensible but I have a sneaky suspicion that it'll be canvas again this summer.

Tuesday, 12 April 2011


I'd always had it in my head that before my hubby got really tired of wet canvas and damp, we'd buy a campervan. I love tents; I love putting them up; I love the smell of canvas and crushed grass. But we are getting older and it's the crawling in and out of the place that he doesn't like, and I must say it gets more and more difficult as the years go by.

A temporary fix to this problem has been an innovation which means that we pump up 4 vinyl air beds, tie them together with two purpose-made straps and concoct a slightly-higher-than-ground-level-bed when we go camping these days. I always make sure it's extra-special comfy with a duvet under us, followed by a fitted sheet and then as many duvets as we need to keep us warm. In recent years we have been warm as toast most of the time, despite the fact that our latest tent has a rather inferior grade of innner tent fabric - hence heat escapes more readily.

I must explain that we had to buy a new one - completely at the expense of the Council's insurers - after a dog waste bin collector for the Council chose to drive over our previous tent as it lay in the road airing after a particularly wet weekend.

I'd said to my nearest and dearest, "Don't put the tent on the road, someone will drive over it."

To which he'd replied, "Don't be silly, no-one would drive over that."

The dog waste bin man drove up to the tent - which wasn't necessarily a tent but a large amount of fabric lying in a pile in the road. We're talking about what is sold as a 5-berth frame tent (which as any camper knows will be just right for two!) He looked left and right and obviously couldn't see anyone and proceeded to drive over it. I was watching him through the kitchen window and just didn't have time to stop him. We live in a cul de sac so unfortunately for him, when he came back there were two very angry people standing in the road with yards of thick canvas in their hands and, shall we say, his progress was gravely impeded. A verbal - and nearly physical - altercation ensued the result of which was the purchase for us of a new tent.

I've digressed - sorry - but I thought you'd be interested. So we are at this point in our lives when we're not going to stop camping, in fact we're probably going to spend more time away now that I've retired. A campervan seemed like the obvious choice and I've been somewhat half-heartedly looking at ads. In the back of my mind I've had this dream that we might buy the right vehicle and have it converted to our own tastes. That would mean without the flat screen TV but with a shower, loo and a wood burning stove. But it's all been a daydream because I never do anything about it and you can't just decide one day and do it the next - it needs months of planning.

Well, bless my soul, if a converted van with a wood burning stove hasn't just turned up. It's within my price bracket but it's rather big - a converted transit - and I just can't see me driving that somehow. It has everything we would want as it was designed for winter camping. We may well view it as it's just a few miles north of the neighbouring town where I have my chemo. The danger is that we both fall heavily in love with it, woodburner and all. It's all very tempting.

Monday, 11 April 2011

Spoke too soon

Heavy rain clouds approaching - oh well, it was almost too hot this morning to sit out at the front, but I did. My Reiki practitioner confirms that my energy levels are extremely high and everything was flowing well such that she really only needed to give me a quick service today. I can't explain Reiki but then there's lots of things I don't understand. But it sure does seem to work.

Sunday, 10 April 2011

Can it really be April?

Hard to believe isn't it - that it's only just into the second week of April and here I am with a bronzed demeanour finding that for the most part the sun is just too hot to be within its rays for very long. Whether it's the weather or the glorious spring, I don't know, but I'm definitely not feeling half as grotty as I would normally do at this stage of the cycle. In fact in the last two days I've embarked upon a job which I'd had saved up ready for retirement - repair of the double quilt.

I made the quilt in the lead up to the birth of our third daughter and it is even embroidered with my name and the date. It has been used on our bed on and off for the 27 years since I completed it and in certain places has actually worn away. So the task is to patch the patchwork quilt and then create around it a much wider margin so that in future it's not the actual patchwork that gets worn but a border.

I'm quite proud of the quilt - if you visit do ask and I'll show it to you - because the pattern is entirely mine and meant to capture the wide variety of colours and shades found in leaded windows. So it has nine diamonds in each panel interspersed with a dark lattice. As soon as I finish updating you here I'll be back outside in a shady nook with my pins and needles to finish the patching job. Later in the week I hope to get materials for the border. Once that's all done then it'll be time to do the last quarter of the dinining room decoration. No rest for the wicked eh?

Friday, 8 April 2011


Superstition isn't something I pay a lot of attention to but when you're in my position you start looking at all the things you can do in your life to better your chances. So it was that I decided to look around for some amethyst stones on Ebay. Amethyst is purported to have all sorts of healing properties, particularly for the lungs and respiratory system and amethyst is usually purple, a violet incarnation of quartz. This of course goes well with The Journey purple zone which is the colour of my source, my ultimate peace, and my favourite colour. So now I have hung round my next, with my silver pendant, five lumps of amethyst.

Whether or not these make any difference to anything, who knows. What I can tell you is that today I should been feeling pretty grotty and not wanting to do much. However I've already hung out the washing, done some ironing and altered a nice velvet top which I recently bought - and it's not yet 10 am. I had a good night - unlike the one before where I lay awake for a couple of hours before sleep grabbed me. Maybe it's the sunshine, maybe it's our magnificent pear tree in full blossom, or the two early flowing clematis which are resplendent with pendulous blooms, but I am feeling remarkably better at day three than I normally do.

Thursday, 7 April 2011


So the coalition is going to pause and listen or maybe even admend its current National Health Service reforms. Some don't like them but I suspect the real problem is that most of the public don't understand them. Unfortunately I count myself amongst those. From what I've seen there is little true accountability visible from where the patient currently sits. I really don't understand who or which authority is ultimately responsible for my treatment. Here's a list of the people and places I've encountered as I've passed along my cancer treatment journey.

I started with the my GP, and then had Xrays and scans at the local hospital. A chest consultant then took over. I had two biopsy procedures - one on my thyroid, one on my lung - at my local hospital; let's call that Hospital 1. Both biopsy procedures were "inconclusive" so I was packed off to see a thoracic surgeon at a hospital in another health authority and some distance away; let's call that Hospital 2. With a firm diagnosis I returned to a consultation conducted at Hospital 1, but with an oncologist from Hospital 3 which is situated in a neighbouring town but another different health authority. This is where I now receive my chemotherapy and will undergo radiotherapy.

All these consultants write letters to my GP and I'm sent a copy. But who ultimately is in charge of my care? I don't actually know. I have a little booklet outlining my care and how all these different centres, surgeons and consultants relate to me and how I (in theory) have a link nurse who will solve all my problems. The link nurse system doesn't appear to work properly. From experience I know I have to sort out my own difficulties.

So who is in charge of me - who is accountable? Is it my own local health authority? Is it my GP? Is it Hospital 1 or Hospital 3? I'm inclined to think that I'd be much happier if it was my GP, because at least I know where to find him and it's relatively easy to get to see him face-to-face. But do I know enough about it all even to hold an opinion?

I'm going to copy this blog to my MP and see what he has to say about it.

Wednesday, 6 April 2011


I've just had my 'obs' done - blood pressue, temperature, oxygen - and to my amazement my blood oxygen level was 99% and moved up to 100%. It's never been higher than 95% since all this started. I asked about it early on at the clinic and a nurse said that no-one who had ever smoked got 100%. So once again I'm bucking the trend.

Endorphin delay

I'm just jotting this down quickly - I'll be on my way for more chemo in half an hour - while I remember it. Getting out of bed this morning half asleep and with eyes barely open, I hit my little toe on a piece of furniture. Ouch! You're feeling my pain, yes?

Well I've got a very high pain threshold - or probably to put it more accurately - my endorphins are incredibly effective. Such an injury would normally have stopped me in my tracks for no more than about five seconds, the endorphins would have kicked in and then I'd have carried on my normal business. It would only be when that side of my foot had swollen later in the evening and stayed swollen for the next couple of days that I'd have noticed the injury again. Sometimes I bump a shin or an arm and barely notice and cannot remember why I have a bruise or swelling in the first place.

So this morning was a bit of a nuisance as I was in pain for at least 30 minutes before, suddenly, I felt the endorphins kick in and remove much of the sharp pain. I can only conclude this is a side effect of the chemotherapy which I know is only just wearing off, even though it's five weeks since my last dose. The over watering eyes problem has at last abated but I guess I'd still a way to go before it was all clear of my system.

Hey ho - off I go for some more. No, don't feel too sorry for me. It's really no big deal. True I'll feel grotty for three days - today and tomorow I'll be fine - Friday, Saturday and Sunday I won't be terribly sociable. That's all. Anyway it could be the warmest day of the year today and what could be nicer than supper on the decking watching one of our incredibly spectacular sunsets. I shall raise a glass of pure aqua and toast all you lovely people who are being so supportive. Cheers!

Tuesday, 5 April 2011

Postman's knock

Is it just possible that I could be addicted to handing parcels to the postman each day in exchange for ones that I can undo? Maybe. Such is the activity on Ebay that's what it amounts to. It is very exciting receiving parcels on a regular basis I have to admit and I'm just beginning to think that I may have a problem. I've got friends who've battled with Facebook but somehow I've never had any difficulty with that. Perhaps it's because I've never fancied having a virtual farm!

Anyway yesterday I received a very nice pair of grey jeans which fitted perfectly and a maroon velvet top (M&S you know). Today it was a black sleeveless blouse (also M&S). In exchange I gave the postman a parcel containing a blouse and a jacket together, bought by the same person, and also sent off a Cotton Traders blouse purchased for about £2.50 which I'm sure I bought for no more than £1. The balance over the last 31 days of my expenditure and income is about £10 on the buying side but I have had some curtain tie-backs and cedar wood moth repellant disks, so it hasn't all been clothes.

Yes, we had moth in the wardrobe and an old pure wool (M&S again) charity shop-sourced bright red blazer seems to have proved a meal for the little blighters. I haven't worn it for years but was holding onto it just in case I ever needed to dress up as a red-coat. Yea, I know it's unlikely but such speculation fuels much of the storage currently taking place in this house. Actually I can't believe I ever wore it for any serious occasion but the unpalatable truth is I did once!

Monday, 4 April 2011

John Lee Hooker

Strange title, you're thinking. Well it's not that strange given that back in the 1960s - probably 1967 - our three girl harmony group, The Cedarfolk (named after the grammar school we all attended), were given the support slot for the great man himself at, I think, High Wycombe college. I remember distinctly feeling that we were the wrong group in the wrong place that night. But Hooker and his band were wonderfully reassuring when we met backstage and I don't remember anyone throwing anything.

We sang a mixture of English and American "folk" songs - the sorts of things that Joan Baez had only recently made famous. I accompanied these on a nylon-strong guitar. Our fame up to that point had spread only as far as the Kenco Coffee Bar in Dunstable so being the supporting group to a US-based blues singer was certainly a step in the right direction.

I'm mentioning this today because the Cedarfolk are once again meeting for a chin-wag. One of our number lives abroad so we don't get together often. I'm not even sure I've got any recordings of us; mum thinks there are some tracks hidden deep in her collection of cassettes.

I'd often recounted the John Lee Hooker story; so often in fact that I began to wonder if it really was true. A few years back however one of our number brought the poster along when we met and now I at least have a photo of that to prove that I'm not as senile as all that.

Saturday, 2 April 2011

Overhanging shadow

I hadn't realised quite how much the spectre of impending chemo therapy affected me until now. Having thought that I'd left all that behind there's been a lightness in my step and I've been relishing the freedom - freedom from dietary constraints, hygiene obsession, intravenous needles - that sort of thing. However now that I know another cycle is fast approaching it does rather hang like a cloud over me. I will however embrace it. I could have refused - I was actually asked what I'd like to do and I did opt for more poisoning so I've only myself to blame.

Out to dinner tonight and I've put on nail varnish and paid particular attention to my makeup. I'm really looking forward to it - specially as it's an Indian meal to which I'm quite partial.