Sunday…oops – time for a post!

PlaymatI’ve just realised that it has been a few days since I last posted – just shows that I have been keeping busy! However first things first, and here is a recent picture of Olivia on her playmat! I have also been experimenting with some video, and my first attempt is here. It needs either Windows Media Player or any application that will play .avi files. The feet at the end are NOT Olivia’s!

And the final one of Olivia is this one, with Felicity.Playmat

So what have we been doing for the last four days? Well a lot of it has been to do with Felicity’s new venture, Wedding and Event Planning, and the current project which is organising a wedding fair for our church (on a ‘no fee’ basis) to get some experience and publicity. There have been some links on this blog for a while, but the main web site is here.

Although I am getting more active as each day passes, every so often something happens to remind me that I have a long way to go. I am certainly stronger in mind, and I can do more than I could four weeks ago – such as push round the vacuum cleaner, but every so often, something acts as a reminder that I am still physically quite weak. The obvious sign is my weight and physical appearances. The fact thatot a problem, and we carried it between us off the van. Easy because it was at least 12 1/2 is a bit of a give away, and looking at my arms and legs, it is clear how much muscle wasatge there has been. Then trying to run up stairs is a no no, although I can now walk up reasonably quickly, I know that I have done it! And that shouldn’t really be a surprise given that my haemoglobin was only 9.5 at the last blood count – better than the 7 that I was admitted with at Southampton, but still below the normal range of 12-18. (My haemoglobin always was at the low end of the scale though, in the days when I was a blood donor – I think I am severely overdrawn at the blood bank these days) So gently does it!

GeneratorAnother reminder came on Friday. We live in a rural area and our electricity distribution is via overhead cables. These are prone to failure, particularly in bad weather and we we get about two power cuts a year with the last one during the gales in January. With two freezers and two fridges, it is always a bit tense, and so on Wednesday I ordered a generator to act as a stand-by for the house. It is only a small one, about 4KW, and will run off propane or petrol, and provides enough power to run the fridges and freezers, lights and the central heating pump. I have included the photo for the boys to look at – the girls have Olivia!

Anyway, fantastic service from Edge Technology when I ordered it on Wednesday morning. They beat their advertised price, got it from the manufacturer, did the propane conversion, and got it to me within 48 hours! So it arrived on Friday morning in the back of a white van. Now by coincidence, it weighs almost the same as me, so the driver needed a hand. Not a problem, and we carried it between us off the van. Easy because it was eleveated. But once it had been lowered to the ground, could I pick it a couple of inches to move it? Not at all – I just don’t have the upper arm strength. We did eventually move by placing it on wood skids, but it was a bit scary to have another demonstration of physical weakness.

On Saturday afternoon our friend and vicar, Peter popped round, and then it was generator commissioning time. It works well, and the only bit left to do is sort out how it connects to the various appliances.

The big event of the weekend was Olivia staying with us on Saturday night! We decided that it would give Tom and Vicki a break if we looked after Olivia for a night, so they could catch up on their sleep – so she came round yesterday afternoon. She was as good as gold – she slept for three hours at a time between feeds overnight, and settled well. It brought back some memories, and while it was fun for one night, I wouldn’t like to have to do it every night! Parenting is a young person’s game – why some women want to become mothers at the age of 50 plus beats me – you need stamina – lots of stamina!

Now for a quick rant! (taking a leaf out of John’s Blog! This concerns a drug called Erythropoietin – or EPO. EPO is a hormone manufactured by the kidneys, and encourages red blood cell production – just what is needed to combat anaemia! It can now gbe synthesised in the lab, and if injected into patients, stimulates red blood cell production. “Perfect”, you might think. Unfortunately, the not-so-nice people at NICE don’t gree, and have declined to approve it for treating anaemia in cancer patients. True, it isn’t cheap, and many cancer patients become anaemic as a result of their treatment. But let’s look at the alternative, which is a whole blood transfusion. Blood isn’t cheap either. Quite a lot of blood is imported (usually from the USA) which is an expense in its own right. Once bought, it has to be screened, stored (and whole blood has a limited shelf life) and processed. More significantly, there are some conditions for which whole blood is the only possibility, surgery, acute conditions, trauma, to think of three, and using whole blood in ‘non-emergency’ situations when an alternative is available, seems ludicrous.

The blame cannot be laid totally at NICE’s door though, as their remit does not include “Quality of life” issues, and while the administration of EPO would considerably improve the quality of life of anaemic cancer patients, NICE cannot take this into account – hence their verdict of “Not clinically cost effective”.

There are several cancer charities – including LeukaemiaCare – actively campaigning for this to be changed. You could help by supporting them. Here is a link with a little more information about EPO and fatigue in cancer patients.

FlowersRight – rant over! I was out in the conservatory this morning, and I spotted this. A tub of spring flowers that has burst into life, and a welcome reminder that spring is round the corner! So on that note, Onwards and Upwards!

17 Responses to “Sunday…oops – time for a post!”

  1. Richard on 11 Feb 2007 at 4:34 pm #

    Hey Peter…….boy’s toys 🙂 The best way I have found to connect a genny is either to have a double ended wire with a plug on both ends and remember to turn off the National Grid connection or the little machine will struggle to power the whole neigbourhood…….or…….a proper change over switch which will not allow both supplies to be on at the same time. If you do this ensure that you have a light on the mains side so that you can see when power is restored. 4kva is not small for a standby domestic generator but remember that the demand from, in particular freezers, when starting is much higher than the apparent rating.
    As an example as we too have overhead lines and are at the end of a run apart from cuts we had recently a voltage drop. I measued it at about 140 volts and although some things, like the radio and some lights, worked the fridge freezer (USA style) just hummed with the compressor jammed. A real risk of over heating.
    Microwaves are good too.
    At least it will not be a crank start, I asume.

    Onwards and round and round etc

    Richard

  2. Peter on 11 Feb 2007 at 4:43 pm #

    Richard – just finishes making the connecting lead! It uses those 16A blue connectors, and the lead now has a big isolating switch that can be padlocked off to avoid any incidents. I did look at a changeover switch, but no room at the consumer unit. (Lead also has an RCCD in it)

    Genny is 4KW (5KVa) so it should be good enough for the essentials. Yes it is hand start (the engine is a Honda) with a recoil starter, but it starts pretty easily – about 3 or 4 pulls – which is about as much as I can manage!

  3. Richard on 11 Feb 2007 at 5:19 pm #

    Not diesel then. Nothing like a good pull.

    In ’87 I tried to power the grid with a little diesel gen, it really slowed down. 🙂

  4. Richard on 11 Feb 2007 at 5:24 pm #

    PS those ‘ground shots’ are so, so easy to do………….I know there are lots in our unedited files.

  5. Peter on 11 Feb 2007 at 5:49 pm #

    Its not the powering the grid that bothers me (should just trip), it’s if it tries to synchronise itself (unsuccessfully!) with the grid! I did look at diesel, but they are heavier etc, and propane gives a reasonable running time (13Kg cylinder shoul last 10 hours at full load – not as cheap as red diesel, but more convenient!)

  6. John on 12 Feb 2007 at 10:38 am #

    Good to see you keeping busy Peter. Speilberg better look out as you are hot on his tails with that Vid Clip.

    Theres nothing that winds me up more, well maybe one or two or three other thinds than NICE not being able to see the Long Term issues when making their descition. The cost implications can run into Thousands often for things such as hospital stays and further drug therapies etc because they refuse to allow a slightly more but much needed medication onto the market.

    We are so far behind in this country Medically which does come as some suprise considering we have some of the best Teaching Hospitals in the world and as you will know students come from all over the world to Train to become Doctors etc here as we are seen to be the best in the world. Shame NICE is constantly trying to undermine this this.

    I really must stop this ranting, it’s no good for the old Blood Pressure.

    Olivia looks her usual Radiant self, and the jenny looks quite nice too in a weird sort of electrical/mechanical way!! I’d better stop there before this hole i’m digging gets any bigger!!

    See Ya!!

  7. Liz on 12 Feb 2007 at 8:24 pm #

    Great photos of Olivia, Felicity and the flowers! Can’t say that the generator did so much for me – other than remind me of the Falklands and still needing a candle after 11pm!

    As for NICE or not so nice, maybe you should talk to my brother – then maybe not,as you’d both end up more frustrated than you are. Commonsense never seems to come intoit, does it?

    Anyway, you certainly keep busy and good luck with the wedding fair.

    Keep listening to your body and take care!

    Lots of love,
    Liz

  8. Brian Pancott on 12 Feb 2007 at 10:19 pm #

    Peter

    I have been folllowing your news via your blog and other friends. I admire your courage and you wilingness to share your experience with all your readers. I was in touch with Adrian M recently and sent him your Blog link.

    Thanks for the photo of the generator. I am sure it will behave better than a Rover gas turbine!

    Could you let me have Felicity’s e-mail address please as I have some wedding fair news for her. You will know that we already have a link on the church website http://www.stbarnabas.org.uk and I have added a note in the diary pages too (which I now maintain).

    I am keen to visit you or to take you out sometime.

    Janet sends love. Every Blessing, Brian

  9. Gillian on 13 Feb 2007 at 12:50 pm #

    aahhh…… the roar of an engine, the smell of diesel fumes – I suppose it beats the smell of dirty nappy 🙂

    Glad to see you’re happy tinkering again Peter

    L&H

    xxxx Gillian xxxx

  10. Richard on 13 Feb 2007 at 10:34 pm #

    We want more video……….come on………she is nearly a week older now. Is she speaking? Walking? Taking the Oxbridge entrance exam?

    Richard

  11. John on 16 Feb 2007 at 1:19 am #

    Hello, Anyone There??? C’mon Peter you worry me when you don’t post anything.

    Hope all is well,

    See Ya!!

  12. Neil G on 16 Feb 2007 at 9:36 am #

    I echo Richard and John’s comments.

    I hope that the reason we have not heard from you is that you’re having too good a time getting the generator to power the video camera to short the video of Olivia graduating and being a stand in bridesmaid at the Hampshire Wedding Fair!!!!!!!!

    Come on we’re waiting…….

    O&U
    Neil

  13. Richard on 16 Feb 2007 at 9:45 am #

    Neil I though we wanted a long clip not a ‘short’ one 🙂

    PETER……………….COOO EEEEE WHERE ARE YOOOOOOU?

  14. Peter on 16 Feb 2007 at 10:12 am #

    All well – post coming later today (Friday!)

    Peter

  15. Richard on 16 Feb 2007 at 12:39 pm #

    I thought our post came late but it is usually here by 10.00. Very nice people by the way, friendly always give a card at Christmas…………………er………I suppose that could be a hint but as there are about 4 in the team it gets expensive. Bah humbug pass the Winter Pimm’s.

    Sing tunelessly as Peter did …….Why are we waiting…………

  16. Neil G on 16 Feb 2007 at 4:03 pm #

    Richard, We do want a long clip but if Peter shorts the generator who knows what’ll happen and how long it’ll be.

    As the crowd chant ……………Why are we waiting!!!!!!!!!!! other begin to chant “Oh when the saints……………………………………………………………………………………………………………………………………………………………………………………………………………………………..

    Sorry, went to sleep

  17. Denise Lord on 20 Feb 2007 at 5:52 pm #

    Well Peter! We are humbled, amazed, impressed by your blog. First blog we have entered I think. Funny how we have been alongside you , always wished you the very best with your treatments but never communicated in this way before. Of course Derek identifies with your uphill struggle especially and was very moved by what you have written.
    He has been battling for a similar time against the dreaded Parkinson’s Disease which is now seriously affecting our lives.
    We too have been blessed with grandchildren and know the joy you experience to cuddle those little bundles – when they are not screaming that is. We are very happy for you and Felicity to share this miracle of life. To know that whatever the future holds, a little part of you lives on in Olivia. A very special little girl indeed.
    Our love and our very best wishes to you both.

    Denise and Derek Lord

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