Sunday, March 28th 2010

The desert delivery service!

I mentioned recently how some of my carers have been really spoiling me with all sorts of deserts. Well they’re at it again and it’s the usual suspects (Ann, Alli, Debbie). At this rate it won’t be the MND that finishes me off, it will be a calorie overdose! smile_regular Have these people no mercy? If they ever had to do an autopsy on my stomach they’ll get a shock as by now it must be resembling a bakery! I’ve had lemon cakes, chocolate cakes and scones this week alone. No wonder I’ve started to put on some weight. Yes, seriously my weight has started to go up and for me it’s a first as in all the time I’ve had MND I’ve only ever know my weight to either gradually fall or plateau. I suspect there are three reasons why my weight has started to climb. The first is down to the ensure drinks I’m now taking regularly, the second is because my food is being fortified with cream, and the third of course is all these high calorie desserts that my lovely carers keep bringing me.

And all of that was just a lead in to this morning’s visitors. Ann, bless her, had made me a delicious trifle laced with Sherry as well as a home-made jam tart. But Ann herself was busy slaving away in her own kitchen so had left the delivery duties to her husband Roy, and Poppy, their delightful granddaughter who’s been up to the house on a few occasions now and seems to like it here. Poppy is the little girl whose artwork featured here on the blog recently when she drew me a picture of how she was going to ‘save me’! Anyway it was an enjoyable albeit brief visit. Fortunately my brother was on hand, having just delivered my weekly shopping, to take a few pictures of the occasion so you now all know who ‘Hero Poppy’ is.

Thanks for the lovely trifle, Ann. Believe me when I tell you I slept pretty well after all that Sherry although walking was a bit more precarious than usual smile_regular. Oh, and on the subject of sleep, the new bed and mattress has made a significant improvement. I’m not getting any more pain in my lower back and I’m managing to sleep for longer periods of time so that I feel less tired during the day and can concentrate better. However, I am still on the painkillers (Diclofenac) so there is still the question about what contribution they’re having. I hope to find out next week.

Mark’s special visitor!

With Poppy

With Poppy

Poppy and the petrol tanker!



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Thursday, March 25th 2010


What a difference a bed and mattress make. Two days ago I was waking up in the early hours with terrible pain in the lower back, but since having the profiling bed delivered with a foam mattress things have taken a turn for the better. The profiling bed I was given is a high spec one so can be configured in a variety of ways which I’ll probably make use of more as time goes by. But for now all we’ve had to do is elevate the top end so that my chest and head are slightly inclined away from the horizontal. With just this one manoeuvre I was able to start feeling the benefit on my spine straight away as the panel began to elevate. This in combination with a mattress that offered a higher degree of comfort than the pressure relieving mattress helped ensure a much better sleep. In fact even when I woke up in the morning there was still no pain and I felt a lot more refreshed than I had been lately. So based on the evidence so far it certainly looks like the problem was a positional one.

Two nights with a waking nurse

It was more coincidence than anything as we’d not expected the profiling bed to be delivered on Tuesday, but for the past two nights I’ve had the company of Marion, a very pleasant Macmillan trained nurse now working with the Hospice at Home team for St Michael’s Hospice. Lara, my palliative care doctor was becoming concerned about my lack of sleep and wanted to ensure that I got some much needed rest as by this time I was really starting to feel fatigued. So she’d made available a waking nurse who would be on hand to help alleviate any pain or reposition me in the night if required. So on Tuesday night Marion turned up at 10 PM and stayed with me until 7 AM the following morning. Had I still been sleeping on my old bed then I suspect there would have been more for her to do. Nevertheless on that first night I did wake up a couple of times, the first shortly before 4 AM when I was feeling unusually hot and, strangely for me, had a bad chest cough. Marion was on hand to prop me up further in bed and give me some water. I woke up again around 6:30 AM but on both occasions was pleased to note that I was not in any pain. Last night was even less eventful and I managed to sleep all the way through from 11 PM to gone 6 AM. So although I barely tapped into her nursing skills it was comforting and reassuring to know that she was on hand if I ran into difficulties. One thing I would add is that on both nights I had taken a Diclofenac tablet shortly before going to bed so there is still the question of how much impact the slow-release medication is having. For this reason I have asked Marion if she can liaise with her superiors and come back one night soon so that I can try an experiment. I want to come off the medication as I don’t want to spend the rest of my life on painkillers if I can help it but would like the reassurance of knowing that I have someone on hand for the first night just in case I do wake up in pain.

Catching up

So what else has been happening over the past couple of days? Quite a lot actually. On Wednesday morning I had a visit from Marion, my OT, and Stuart from Liftech, who’d been brought round to do a quote on some ceiling tracks for the top and bottom of the stairs. These are really something of a stopgap solution as it is still the intention of course to build an extension on the house but that is woefully behind schedule. The short run ceiling tracks will make it easy for my carers to get me downstairs and out of the house, something I’ve not been able to do since the start of the year. Whilst she was here, Marion took down some details from the profiling bed so that she can contact Possum to see how easy it will be to interface their environmental control systems with the bed’s electronics. We’re hoping that it will give me some independent control of the bed’s profiling abilities so if I do become a bit uncomfortable in the night I may be able to raise or lower parts of the bed myself.

In addition to a house visit from my GP late Wednesday morning I’ve also had my first telephone consultation with my neurologist. I was due to see him next Monday at the hospital but getting there at the moment is rather difficult and as there are no tests to conduct it seems pointless having all the hassle of trying to arrange transport just so I can end up sitting in a waiting room for 30 minutes or more (despite being on time) and then spending roughly the same time chatting in a consultation room before leaving. So I contacted his secretary recently and asked if I could switch it to a telephone conversation. So today, completely out of the blue, he phoned me up and we discussed everything that had been happening over the past four months since I had last spoken to him in November. We’ve agreed (because I still want to maintain the link with my neurologist) that in future all I need do is contact his secretary and request a phone consultation and he will get back to me within a day or two.

This morning I had a visit from Mark, the Building Control Manager with the local council. He’d called round to do a feasibility study on whether it would be possible to relocate the drain inspection cover in the back garden. At the moment it would be slap bang in the middle of the proposed extension (assuming we have no choice but to build at the back of the house) and I certainly don’t want to spend my remaining days in a room with a sewer inspection cover close by!


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Tuesday, March 23rd 2010

The drugs don’t work!

Over the past week we’ve been experimenting with Diclofenac in combination with Paracetamol and the pressure relieving mattress to try and find something that would give me a good night’s rest. Unfortunately they have all failed and I continually wake up in the early hours of the morning, typically around 3:30 AM by which time I’ve been lying in the same position for about 5 1/2 hours. No sooner am I awake and I become aware of discomfort in my lower back which is sufficiently uncomfortable to continuously impinge on my consciousness thus preventing me from getting back to sleep. So until 8 AM in the morning I am fully conscious but with my eyes closed. Now these drugs that I’m taking are supposed to be slow release and in theory should carry me through the night but to be honest they are either totally ineffective or past their best by the time I wake up. Consequently after weeks of partial sleep I am really starting to feel fatigued and I definitely don’t feel my best during the day.

It’s also been a frustrating week in terms of trying to obtain a profiling bed, and it hasn’t been for want of trying either. I’ve had district nurses, GPs and the care agency all breathing down the necks of the folks over at Joint Equipment Services. Finally at lunchtime today one was delivered and two very pleasant chaps soon had it assembled. I can now also start using the new foam mattress that had been delivered last week. Because it is actually thinner than the pressure relieving mattress it would actually be too low to the ground for me to be able to stand up even with the assistance of a carer. But the new all-singing all-dancing profiling bed can be raised or lowered so it should be a lot easier for me.

I’m really looking forward to tonight and seeing what this bed is capable of. Hopefully we can configure it in such a way that it will take the loading of my spine although it may turn out of course that being left in any position for too many hours will start to cause problems. But for the next two nights we can monitor the situation quite closely as I am taking advantage of the Hospice at Home service. Starting tonight I shall be having a Macmillan trained waking nurse stay with me from 10 PM through to 7 AM. So if I should wake up in the night and find myself in pain I will have somebody close at hand to either reposition me or administer some pain relief medication.

Fingers crossed for a long and peaceful sleep!


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Tuesday, March 16th 2010

Another sleepless night

So much for the pressure relieving mattress! I woke up at some time before 4 AM with discomfort in my lower back. It steadily worsened until every movement of my legs and even my regular breathing was aggravating it dashing all hopes of ever getting back to sleep. And it really was the longest night where the minutes seemed like hours and daylight would never arrive. To try and alleviate the pain in my lower back I repeatedly tried raising it up from the mattress a few inches by folding my legs and pushing down. But this repeated action eventually caused the duvet to slip off the side of the bed shortly before 6 AM so for the remaining two hours before Ann arrived I was not only in pain but also cold. I don’t think I’ve ever been so glad to see someone and although it was very painful getting me to sit upright I did compensate by having a luxurious soak in a foam bath. For the rest of the morning I was too shattered to do anything and just sat in my office chair trying to doze off.

I’ve chased up the district nurse to find out what was happening with regards the profiling bed as clearly the pressure relieving mattress was not effective in curing my back problems. Unfortunately I was told that there are none available so my name has been placed on the waiting list but at this stage I have no idea how long that will be.

In response to a priority call from my care agency, Lara, my palliative care doctor from the hospice phoned to discuss the problems I was having sleeping and the pain that was preventing it. She’s prescribed something called Diclofenac which is an anti-inflammatory drug that can be used to reduce pain. She’s only prescribed a one-week supply of these tablets as prolonged use can have a negative impact on the stomach lining so people who take these tablets long-term also need to take something else to counteract the side-effects of Diclofenac. Lara has also made me aware of the Hospice at Home scheme which is part of our local St Michael’s Hospice that could be called upon if the tablets don’t work. Basically what it means is that I would be given a waking nurse for a few nights who would be in the house with me ready to assist if I woke up in pain.

As the evening wore on I became very apprehensive about going to bed for fear of another night like the last one. Until recently I’ve only had to deal with MND and its effects during my waking hours and took consolation in the fact that at the end of the day I could sleep all my troubles away. But now this horrible disease is chasing me into my sleep and depriving me of the sanctuary of oblivion.


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Monday, March 15th 2010

Still in pain!

Lower back pain continued to plague me all weekend. Every morning I’m waking up in the early hours with discomfort in my lower spine and surrounding area that steadily builds in intensity preventing me from getting back to sleep. Trying to move my legs or indeed even the simple act of breathing aggravates it. By the time my carers arrive at 8 AM I’m about ready to start climbing the walls. Even lifting me into an upright sitting position is terribly painful.

Not sure if coming off the Tramadol tablets so abruptly was the cause but I was terribly ill over the weekend with pale skin, little appetite and at one point physically sick. Not my best weekend and it left me feeling completely drained and of course extremely tired no thanks to all the sleep I’ve lost lately.

On Monday morning I had an emergency visit by Heather, the district nurse, as by this time it was becoming obvious that the pain in my back was not going to go away by itself and only seemed to be getting worse. My care agency were becoming concerned about my lack of sleep and general health and put a call in first thing this morning. Fortunately the district nurses were aware of the problem as they’d also received a fax from my GP asking them to look into pressure relieving mattresses and possibly even a hospital bed.

As a first step I decided to settle on just having a pressure relieving mattress and this was ordered up in the morning and amazingly was delivered just after 4 PM in the afternoon. To be honest we’re lucky here in Basingstoke because Adult Services’ Integrated Community Equipment Store for the whole of Hampshire is based within the town so obtaining equipment, provided that it is in stock, has never been a problem. The district nurse returned shortly afterwards and set it up ensuring that it was correctly inflated for my bodyweight. Apart from the mattress itself the only other piece of equipment is the pump and controlling electronics and this runs almost silently. Once inflated the mattress is about 8 inches thick so cannot be placed on top of my existing 9 inch thick pocket spring mattress. This has meant trying to find a home for a mattress where space is at a premium as the house is starting to fill up with the clutter of all this equipment I now need. For now it’s keeping me company in the study standing vertically up against the wall but will not be able to stay there as it will restrict the movement of my mobile hoist when it comes time to use it. We solve one problem and create another!

With the mattress removed there is only the base unit of my bed left and it was at this point that common sense finally kicked in and I asked the district nurse to order me a profiling bed just in case the pressure relief mattress is not effective on its own. Like everything else associated with this disease I’d resisted the offer of having a hospital bed, or community bed as they are sometimes called, for some months now. I was quite prepared to accept having one in the extension when it gets built but didn’t like the idea of giving up my lovely bed and rearranging the upstairs bedrooms. I guess subconsciously it was another futile attempt at trying to maintain the life I used to lead, and accepting a hospital bed was like giving in. I know that might sound crazy because ultimately MND will march along at its own merry rate regardless of what I want or how stubborn I am. But sometimes I just like to preserve the illusion of normality for just a little bit longer. Anyway let’s hope that tonight I can enjoy a decent night’s rest, fingers crossed.


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Friday, March 12th 2010

Painful mornings

I’ve been having a terrible time this past week with pain in my lower spine and the consequences of taking medication to alleviate it. In my previous post I mentioned I was about to try something called Tramadol, a slow release painkiller that would hopefully bring some relief in the early hours of the morning and until my carer arrived. Unfortunately it does not appear to have brought any benefit as I still wake up around 5 AM with pain in and around my lower spine and can do nothing but lie there patiently for the next three hours until I’m ‘rescued’. We tried varying the dosage starting initially with one tablet and progressing up to three tablets just before going to bed but there doesn’t appear to be any discernible difference no matter what quantity I take. So I may not be reaping any of the benefits from these tablets but I am most certainly suffering from a couple of their side effects. I’ve been waking up every day with a very dry mouth and it seems to persist through most of the day despite drinking lots of fluids. But far more uncomfortable has been the terrible constipation that has plagued me all week. These tablets just seem to slow everything down to the point where it is difficult to pass anything, a most uncomfortable feeling. So today I made the decision to stop using Tramadol as it only seemed to be bringing new problems and not curing old ones. I had a telephone consultation with my GP today to see if there was any other painkiller but she was reluctant to prescribe any opiates as they would only make the constipation worse. Instead she is going to chase up the district nurses and I guess the OT people to see what can be done about getting a pressure relieving mattress for my bed.

Sad day

I suppose the writing has been on the wall for some time but I just didn’t want to believe it. (Selfishly) I kept hoping that things would change and everything would be back the way it used to be. But unfortunately it was not to be. Francesca has pulled out of my care package because of the escalating workload she has with her main job. For some time now Francesca has been performing a bit of juggling act trying to keep everyone happy, but the scope and responsibilities of her main weekday job have in recent months began to encroach on the weekends which of course is when I depend on her part-time care skills. This weekend was to be Francesca’s time with me but the demands of her full-time job currently have her working in Europe. Clearly with a care package like mine that is becoming ever more complex it is absolutely imperative that we have a team of carers that are reliable, flexible and willing to cover for each other. Francesca feels that with her current level of work she would not be able to commit to my care on a regular basis. Of course I was very upset to hear the news as Francesca was my longest serving carer and (perhaps naïvely) it had been my hope that she would be looking after me for the remainder of my journey. It’s also particularly frustrating that it should happen now when my needs are increasing by the month. Not only that of course but we had become good friends and I always look forward to the weekends and my time with her. But of course everyone has their lives to lead and Francesca certainly seems to be doing well in her full-time job so in that I wish her continued success. I would also like to thank Francesca for everything that she has done for me in the time that we have known each other. Although it was not her choice as a main career there was no doubt that she was a naturally gifted carer. I will miss having her around. However we shall continue to be friends and keep in contact so I daresay that she will continue to pop up on the blog from time to time.

Ann now becomes my longest serving carer and the last member of my original team.


Here’s a bit of blog trivia. Today’s post is the 100th unique post. That’s 100 separate updates to my blog in just over two years. I would have reached this figure a long time ago if last year’s daily events were posted individually (like they are now) instead of being grouped together several times a month. Anyway here’s to the next 100!


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Thursday, March 4th 2010

The longest night

It’s no exaggeration when I say that I’ve just had the worst night of my life! I got no sleep at all and lay awake all night unable to get comfortable because of the terrible pain in my lower spine. The problem started at the beginning of this week when I was being woken up at around 5 AM with back pain and not able to get back to sleep. As the week has progressed it has steadily got worse. But the constant unrelenting pain all through the early hours of this morning was far worse than it had previously been and when you can’t get to sleep and can do nothing but grit your teeth the minutes seem like hours.

Although I can’t turn my head enough anymore to see the bedside clock there are certain events that occur that tell me exactly what time it is. So for example I always know when it’s 6 AM because I hear the central heating system fire up. But this morning that seemed a lifetime away and even when I did hear it start-up I groaned inwardly at the thought that I was still two hours away from my carer arriving. The next hour crawled along at a snail’s pace until eventually the bedside radio sprang to life signifying that 7 AM had arrived. With music and the persistent chitchat of the DJ to engage the mind the final hour passed slightly quicker although nowhere near as quick as I was praying it would. It was also colder as my constant attempts to bring my knees up to try and alleviate the pain had caused the duvet to slide off the bed. On top of this my eyes had started watering again and were stinging badly causing me to screw my eyelids up tight. I breathed a huge sigh of relief when I heard the front door open. But even getting off the bed this morning was a very painful experience. First the act of lifting me into an upright position on the edge of the bed caused my back to protest even more, and secondly by stretching my legs over the edge of the bed set off painful cramp in my right calf and in both sets of toes, not the best way to start the day. But once I was up and soaking in a Radox bath my back pain gradually began to dissipate and within the hour it had gone.

These days I can barely move anything above the waist when lying horizontally so if a pain develops in my lower spine I am powerless to reposition myself, and lying in the same position for 10 hours is not doing me any good. All the time I was getting up in the night for bathroom visits I never had a problem. But now that I have grown weaker and am unable to get off the bed unassisted I am starting to hit problems brought about by lack of mobility. We’ve been experimenting with various types of pillow lately such as bolster, V shaped, and memory foam, to see if any of them improve my comfort and help get a better night’s rest. Unfortunately nothing so far has done the trick.

This latest episode was the last straw as by this time I had been running for almost 3 days on hardly any sleep and was therefore feeling absolutely shattered. The care agency made arrangements to have a GP make a house visit and after explaining the situation I was prescribed a slow release painkiller called Tramadol which is supplied in 50 mg capsules. Ann, bless her did all the running around picking up the prescription and collecting the capsules. So tonight I shall be taking 2 Paracetamol tablets followed by 1 Tramadol capsule (for starters but may need to tweak the dosage) and keeping my fingers firmly crossed in the hope that I get some much-needed pain-free sleep.

Birthday girl

In complete contrast to the above something nice rounded off the day – a visit from my brother and lovely sister-in-law who dropped in for a few hours before heading off into town to celebrate Chery’s birthday at one of the local restaurants. Happy birthday, Chery! It was really lovely seeing you again and I’m glad you liked the present. Thank you for the delicious home-made brownies. They went down a treat! Oh, and thank you Ali for helping out with the photos. It’s not often I have the opportunity of having a picture taken with both Jason and Chery in the same frame and you’ve captured a nice one.

Here she is, the birthday girl! 🙂

With my lovely sister-in-law, Chery




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Tuesday, March 2nd 2010

Letter from across the pond!

I had a big surprise this morning when I went to check my messages – an e-mail from Ruth! Those of you who have been following the blog may recall that Ruth was my very pleasant Association Visitor and point of contact with the MND Association until last summer when she and her family left good old Blighty to make a home across the pond in the US of A. We’ve not exchanged e-mails since last September so it was a real treat to see one sitting in my inbox today. But the title ‘A very sad story’ had me perplexed. Almost simultaneously two thoughts flashed through my mind: had something tragic happened… Or was I being sent a joke! With some trepidation I began to read…

A very sad story!

Once upon a time there was a young lady (use your imagination here) who was introduced to a gentleman who had just had some rather bad news about his neurones. She wanted to be his friend and he kindly invited her into his home and, over a period of time, they started to get to know each other; for example, he learnt that she was a very bad time keeper, and she learnt to look very knowledgeable when he talked about computers 😉 The man had been told that he had a serious illness but, despite the fact that he faced many challenges as his body stopped doing what it should, he was always cheerful and made the lady laugh.

Then, one day, the lady told the gentleman that she would be going to live in another country but she promised that she would keep in touch regularly. She lied.

After she had been living in the new country for quite a while, she began to feel guilty that she hadn’t kept her promise. Of course, she told herself, I’ve been very busy making friends, helping out at school, having visitors over Christmas and going to the Smoky Mountains, playing Freecell on the computer, but she knew that this wasn’t a good enough reason to abandon her friend. So she decided to write to the gentleman, but wasn’t sure how to start. She thought she would begin by reading his blog and when she did, she realised how lucky she was living in a country that knows how to deal with snow (tee hee), and how many changes she had missed in her friend’s life, and she felt bad. Then she plucked up her courage and put pen to paper (come on, keep using that imagination). She asked him if he had seen their friend Esther at all, or been to any MND meetings; whether the bulbs were beginning to come up yet because, where she lived, it was still a long way from Spring (and she’s getting a bit fed up with winter); and if he could please stop mentioning cooked breakfasts in his blog because she was really missing English bacon (also proper chocolate, crackling on roast pork, fish and chips, curries……….).

Finally, she popped her letter in the post (imagination, remember), included some photos of her family, and crossed her fingers that he would forgive her and write back.

The End

Hello Ruth. I hope you didn’t mind me posting your e-mail. I just thought it was such an original way to reconnect that I wanted to share it smile_regular. Really lovely to hear from you again and thank you for the lovely photos. Honestly, there is nothing to forgive. I am just grateful that you remembered me and still find the time to visit the blog. I’ll be writing a more personal e-mail to you very shortly. Miss you! 

Ruth, my very cheerful former MNDA visitor


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Sunday, February 28th 2010

Fun with the camera

In contrast to the rest of the week I’ve had a much better and well rested weekend and feel all the better for it. Francesca was in at the weekend to lift my spirits and as you can see from the photos below we had some fun with Mr Gingerbread Man, yet another recent treat from Ann, bless her. In addition Francesca became my hands and helped me get some documents scanned into my computer and my digital photo frame updated with a new batch of photos. So all in all it was all things visual this weekend. Thanks for taking some nice photos once again, Francesca. They brought a smile to my face when I was resizing/tweaking them for the blog.

My new friend!

Attack of the gingerbread men!

Happy! 🙂

Go on Francesca, bite his head off!

A kiss for Mr Gingerbread Man

The gingerbread family. . . with Junior 🙂

A thirsty gingerbread man!

My carers are spoiling me

You know, I have to say that all my main carers really are spoiling me lately. Ali for instance surprised me one lunchtime with a big bar of dark chocolate a few weeks ago after we were talking about things that I enjoy but have not had for a while. On Shrove Tuesday she turned up with all the ingredients for making delicious pancakes and which amazingly I managed to consume five without any swallowing problems – so much for a reduced appetite, ha ha. And then a week ago just before she took a week’s holiday she arrived with a couple of lemon cheesecake slices, how kind was that?

And as for Ann, well she seems to have a standing order with the bakery! Apart from the aforementioned gingerbread man, there’s been a steady stream of cream horns, apple pastries, and chocolate éclairs. And when she’s not visiting the bakery she’s making me jelly and blancmange! Can’t she see I’m trying to lose weight! smile_regular

And now Debbie has fallen into their bad habits! I’ve had to eat my way through various chocolate and lemon desserts over the past couple of weeks. A few days ago we were talking about the different types of cheese that we liked and I just happened to mention Wensleydale cheese as one I would like to try, this being of course a firm favourite with Wallace and Gromit. And guess what turned up in my cheese omelette last weekend? I just couldn’t resist saying ‘cracking piece of Wensleydale, Gromit’! But this weekend she outdid herself and made a delicious cheese sauce to go with some white fish. I’ve been struggling lately to eat cod fish because of its texture and tendency to stick at the back of the throat but the sauce helped it slide down easily. And for dessert? A delicious raspberry Eton mess that simply melted in the mouth. After that little lot I was stuffed to the gills! Nice one, Debbie!

How sweet is this?

And finally before I sign off today I just wanted to show you this picture that Ann’s delightful little granddaughter, Poppy, drew for me. I’ve had the pleasure of meeting Poppy on several occasions now and she really is a little darling and brings a great big smile to my face with the things that she says. As you can see from the words in the picture this is Poppy’s way of curing me. I was deeply touched when Ann brought it round to show me and very nearly ended up with a tear in my eye. Oh for the innocence of youth!

Dear Poppy, thank you so much for the lovely drawing that you made for me. Because it is so important I have given it a home here on my blog so that (fingers crossed) even when you have grown up you will be able to come back and see it and understand how much it brought a smile to my face by someone who I hardly know.

Hero Poppy to save me!


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