Wednesday, 26 June 2013
Soon will the high Midsummer pomps come on,
Soon will the musk carnations break and swell,
Soon shall we have gold-dusted snapdragon,
Sweet-William with its homely cottage-smell,
And stocks in fragrant blow;
Roses that down the alleys shine afar,
And open, jasmine-muffled lattices,
And groups under the dreaming- garden- trees,
And the full moon, and the white evening-star.
By Matthew Arnold (1822 - 1888)
Friday was the 21st June, the summer solstice, the longest day of the year when the sun rose at 4.52am and set at 9.21pm, depending on where you are in the country; we had daylight for approximately 16 hours, 38 minutes and 2 seconds. As usual our great British summer weather was overcast, cool and wet, so didn't disappoint! This Sunday also saw the evening when the moon looms larger and higher in the sky and is the closest distance to earth for this year while it is in full phase. It is supposed to look 8% larger and 17% higher in the sky. This is known as the 'supermoon' phenomenon, but again in sunny, starry Knebworth it was cloudy and not a glimmer of the moon could be seen. Luckily we got a good view the following evening and captured it on photo, although the moon had begun to wane, it was still shining bright. It is most unusual for the 'supermoon' to occur so near to the summer solstice.
Monday was the 24th of June and traditionally celebrated in European, Latin American and Scandanavian countries as 'Midsummer's Day'; It is also celebrated by Christians as the birthday of John the Baptist. So Midsummer's Day was a very apt day for a wander around Cambridge University Botanical Gardens, a colourful and tranquil oasis on the outskirts of the city. Have a wander through the photos and enjoy the midsummer garden.
You who walk,
Maybe with troubled thoughts,
Come enter here and rest;
And may the sweet serenity of growing things,
And the heavenly peace,
Be mirrored in they soul.
Besides all the natural phenonema going on with solstices, supermoons and midsummer, it just so happened that the 21st day of June coincided with 21 months of waiting for my transplant. Perhaps it is written in the stars ...
If you want to sign up to the organ donor register click on: www.nhsbt.nhs.uk/
Thursday, 20 June 2013
|Three fathers, two grandfathers|
I have always celebrated having my dad, a dad whom I was very close to, whom I could always depend on when things didn't go my way, I was always a real daddy's girl. When I married Rob and moved to Hertfordshire from Lancashire, I was a long way from my own father, but I was lucky enough to gain a father in law through my marriage. I always saw my father in law as father number two, so for a long time in my life, I had two wonderful fathers.
One of the hardest parts of my illness was having to tell my mum and dad about it when they were dealing with so much themselves already. At first we shielded them from the worst and played my illness down a little and then when we had a roller coaster year after my diagnosis, we were forced to explain more as it looked as if I was going downhill fast and we felt they needed to be prepared rather than shocked should I not make it through. After much deliberation, we decided to tell dad when it came to me going on the transplant list purely because we felt he needed to be prepared.
He hadn't really taken on the seriousness of it all until then, probably because we played it down where we could and he was shocked outright when we came to tell him about the transplant and there was no easy way to do it. Selfishly I needed my dad's support more than any other time in my life at that moment, but he was really over and beyond it in his own anguish to be able to cope with it well and I was just sorry I'd had to burden him even more. I was also sorry that I couldn't step in and help and support my dad more during his illness, but the worst part of his illness coincided with mine unfortunately and living over two hundred miles away exacerbated the situation for us all. He couldn't come and see me when I was really ill and at times I couldn't get to him when he was really ill.
It always surprises me how much we come to expect of our parents and how much we need them, whatever the age we are.
Fortunately during the last year of his illness, I managed to become a bit more stable in my illness and I managed to get back to Lancashire to visit when I was able and well enough. The last time I saw my dad, he pressed a little box into my hand. It contained a silver cross and disc on a silver chain. The disc is engraved with The Lord's Prayer and and the Soldier's Doxology. My dad explained it had belonged to my grandfather, who had worn it all through his time in the army and during the Battle of the Somme, which he managed to survive. My grandfather, although not a deeply religious man had worn it in faith to keep him safe and see him through the war. My dad was not a religious man at all, but wanted me to have it, both because of its sentimental value and in the hope if I keep it with me, it may keep me safe too.
I have packed the cross and its prayer and all the hope that comes with it into my transplant bag, the bag that I have to have ready and waiting should I get my transplant call; I reckon if it got my grandfather through the Battle of the Somme, then it will be a good thing to have with me when I have to go through transplant.
The Soldier's Doxology
Praise God from who all blessings flow,
Praise him and all creatures here below,
Praise him above ye heavenaly hosts,
Praise Father, Son and Holy Ghost.
(First sung by starving, union blue soldiers during the American Civil war when help at last arrived at their prison in Richmond, Virginia))
Friday, 7 June 2013
'This is the month of June,
The month of leaves and roses,
When pleasant sights salute the eyes
And pleasant scents the noses.'
Nathaniel Parker Willis
Another week has rolled by and June has arrived bringing with it, wall to wall and beautiful, warm sunshine. At long last. It has been a lovely week to get the garden sorted and tidied and cleaned up and all set for summer and a lovely week to spend just enjoying it. Rob has been busy blasting clean the patios and planting all the summer pots and baskets for me and because of the surge of warm weather everything is now bursting into life. We have planted a new herb garden and I've sown lots of wildflower seeds this year, so we will see what happens...
It has been a bit like 'Springwatch' in our garden as great tits and blue tits have been frantically flying to and fro to feed their chicks, which have hatched out in each of the nesting boxes. It feels quite a responsibility when you can hear them all squawking and then the naturally curious cat from next door is on the prowl: we don't wish to scare off either the cat or the birds, so we have been trying to carefully distract the cat. If the adult tits get scared they will abandon their nests. I was hoping to see the fledglings fly the nest, but the blue tits cheekily disappeared in the early hours of the morning one morning, long before I got out of bed and hopefully they are safe and healthy and now flying around the vicinity. The great tits are still hard at it, so I'm keeping an eye out for some action!
We had good news about the next round of genes testing I had had done at Addenbrookes Hospital and the Genetic Consultant has confirmed that I do not carry the other main inheritable gene for PH, gene ALK1, so as a family I think we can rest easy now that the girls will be safe from Pulmonary Hypertension because of family history. There was only a very small risk I may carry this gene, but if it was confirmed I carry it, then the girls would have been at some risk. So that is the genetics testing all finished for now and the common causes for developing familial PH have been ruled out, unless they come up with something new or have a major breakthrough.
This week's wheelchair adventure was to Hatfield House to their annual garden fair. It was a lovely sunny Sunday and perfect for a picnic and a browse around the beautiful grounds and fair. Enjoy this week's photo show, the picture of the house is Hatfield House by the way, not mine just in case you were wondering!
The fountain murmuring sleep,
A drowsy tune;
The flickering green leaves that keep
The light of June;
Peace, through a slumbering afternoon,
The peace of June.
A waiting ghost in the blue sky,
The white curved moon;
June, hushed and breathless, waits, and I
Wait too, with June.
It's now come round to June again, two years since I was referred for transplant assessment and I have been waiting 628 days for my heart and double lung transplant. The situation is beginning to feel beyond hopeless and we desperately need more organ donors and for organ donation to be part of our culture. Three people a day are still dying while they wait for a transplant and so far I have been one of the lucky ones being well enough to remain on the transplant list and keep on waiting the long wait, although tragically 1884 people will have lost their lives while I've been waiting. Still only 31% of the population have signed up to be organ donors and yet over 90% would accept an organ from someone if they thought they were dying.
If you want to help and sign up to the organ donor register click on: www.nhsbt.nhs.uk/