Saturday, 21 September 2013

Just An Ordinary September Day

It is Saturday 21st September, just another ordinary day. We are getting ready for some friends who are coming to stay. Rob has gone out last minute food shopping and I am busy preparing food, cooking one of my favourite dishes a lamb tagine. We have been chatting about plans for next weekend too, it's going to be our 23rd wedding anniversary. We've also been making plans for a couple more short trips in October before the clocks go back and the nights get longer and days shorter and darker. I'm wondering if we've time to fit it all in before the frenetic count down to Christmas starts. I am so looking forward to everything, so many activities to juggle and I always get excited about Christmas, I have a romantic picture of Christmas in my mind already: Christmas trees, mulled wine, log fires, present shopping, cosy nights...

I am sat in the kitchen preparing the vegetables and lamb for the dish I'm cooking and all feels quite content and normal, except for the fact that it isn't any ordinary day in some ways for our family, we have just reached another big landmark in my transplant journey this morning. It is exactly two years since I was listed for my transplant and put on the active transplant list. I say 'active', but for us this doesn't really seem to ring very true.

As I am sitting here going about my mundane business of chopping up the vegetables, my mind drifts from ordinary thoughts like Christmas to what I imagine to be the busy world of 'transplants'.

Doctors, nurses and whole teams busying about their patients, saving lives; someone picking up the phone to hear the both exciting and frightening news that a match has been found;  ambulances blue lighting in the dead of night; beeping, busy intensive care units; visiting and waiting relatives; and most of all I can't leave out the thought that somewhere, amidst all this activity, is a devastated family somewhere, making the biggest decision they have probably ever had to face and granting permission to give the gift of life; everyday people's lives being changed forever one way or another. This is going on up and down the country.

I stop still and pause for a moment: 'Will this ever be me?' 'Will a call come to say a match has been found ever happen?' 'When might it happen?' 'Will I feel ready?' Will my family cope?' 'Will it ever happen?' 'What if it doesn't?'

I laugh to myself and think - same old stupid and silly questions that are never answered yet keep popping in my mind, time and time again and have done for two years now - I should really be used to it by now. Somehow though the longer it goes on, the harder it is and you can never get used to it. There is no control over the illness and what it decides it will do and when and there is no control over the events it will take to change things and added to that, there is no control over whether things will be better or worse afterwards. Yet I know for me I would rather continue this wait than just let this illness take its course, as it is only going to go in one direction and accepting the offer of a transplant is the only way I can see to give me some control back and take the only chance there is on offer to get a better quality of life.

I check the tagine and begin to stir in some spices and then I check myself as my thoughts are lost as my mind flashes back to some of those very frank conversations I had with the transplant team two years ago. They are still fresh in my mind as though it happened only yesterday. They were so life changing. They spoke gently of my poor prognosis and offered me a heart and double lung transplant as a way forward to better my prognosis and improve my quality of life. They did tell me that an average wait for a heart and double lung transplant is two years; they did lay it on the line that it may be a long wait; however, the transplant surgeon then told me that given my height, weight, antibodies and blood group, he would confidently say that it would probably only take up to six to nine months to get a match.

I recall Rob literally nearly falling off his chair at this information; we were trying to absorb all they had been telling us and we weren't quite ready for the thought of this happening so soon. We much preferred the thought of it being a long way away, somewhere on a hazy horizon, hovering itself further away from us as long as I could remain stable, but still floating somewhere out there, offering some comfort and peace of mind.  

I am glad we were prepared like this, once you are on the active list, you need to be ready mentally for that call to come out of the blue at every minute of every day, at any time and at any place. We have always been so well prepared from day one, but this in turn has taken its toll and made the wait feel long, there has got to be some limit as to how far you can endure what is this sheer mental anguish of being in a state of constant alert. Still, we have to be prepared.

During all this time I know I have beaten the odds that were against me for now, somehow amongst all those prognosis statistics that are thrown at you during transplant assessment, I've been one of those lucky few who manage to quietly slip through that net of numbers and continue softly chancing my good fortune; however, there is no taking away the fact that Pulmonary Hypertension is a life threatening disease, my own disease is still unchanged and severe and the medication options left are minimal.

My dish is now simmering and cooking on the stove, wafts of cinnamon, paprika, ginger and tumeric mingle with aromas of apricots, lamb and honey and as I soothingly stir the ingredients, my mind meanders to where we are now and just how far we have come.

So two years have passed now and we have reached the place that felt a long time coming when I first went on the active transplant list. Two years, the bench mark. So it is no ordinary September morning, it is a watershed, a pivotal moment amongst what is a routine family day. After all the bumps and bruises; ups and downs; sadness and loss; enjoyment and fun and challenges of illness and waiting on the transplant list, we have reached the destination we have been travelling towards for the last few years. At the same time we know somehow that we haven't managed to get there yet. The boundaries have shifted like sand, to where I don't know yet: another hour; another day; another week; another month; another year... No one knows do they? No- one can tell us, can they? Every time we have moved a few months further on, the future we so desperately need seems to move in parallel with us, staying tantalisingly the same distance away.

I had no idea where I might be and what I might be doing on this day two years ago when I was handed a future of uncertainty, laid out bare as though on a plate, stark and clear. Here I am though, making plans and cooking for my friends. In fact it's probably one of the finest destinations in life that I could have arrived at after all, following what I was told and the poor prognosis I was given. When I stop and really think, it was what I wished for more than anything, just to still be able to be with my family, making plans, meeting up with friends and just doing so many of those ordinary things I once took for granted. Things that I value now more than anything else. I realise that all those ups, downs; bumps and bruises; sadness and loss; enjoyment and fun and daily challenges is called living life and I am blessed I am still able to do so.

So we will carry on doing what we have learned to do best, mixing the very ordinary with the exceptionally extraordinary. Trying hard to live in the moment; making most of every minute; trying hard not to think too much about the future. Transplant is all about prolonging prognosis and improving quality of life: so far I've already achieved the best outcome for now, I've managed to remain stable against all the odds, the longer I stay stable, the longer I may wait, but the longer I am continuing to enjoy life before the next stage arrives. The transplant still hovers on the horizon, just as we wanted it to in those earlier days quietly offering some comfort and another path. One day I hope it may move nearer towards me while I remain stable and not me towards it should my condition deteriorate.

Somehow I know the wind of change will blow when it is good and ready and not a moment before.

I return back to my cooking, casually adding a few more herbs and spices to the lamb tagine, it is nearly cooked and I'm back to the present, where I should be and belong. Rob is back and unpacking all that last minute shopping. It's nearly time for our friends to arrive. Life feels content and good and normal and ordinary. This weekend is going to be another good one...

There is an absolute chronic shortage of  organ donors. Over 96% of  people say they would accept a lifesaving transplant if  they needed one; only 31% of these are prepared to be organ donors. There are over 7000 people waiting for transplants; for many of these patients it is a long game of waiting while time runs out; roughly 3 people a day die while waiting. Family refusal to go ahead with an organ donation is still high; it is important to have the discussion about organ donation with your family.

Patients waiting for more than one organ face the near impossible and it feels like a lottery; more lives can be saved if organs are split up and shared out than if they are given to just one person; the shortage of organ donors impacts greatly on those needing several organs; there are just not enough organ donors.  

Two whole years of waiting; 730 days; 2190 people have sadly lost their lives while I wait

If you want to do something extraordinary today sign up to the organ donor register click on:

Wednesday, 18 September 2013

And so back to Dorset


This weekend has been a very hectic one. It is university time once again and so like many other parents this weekend, it was time to do some serious car packing and drive off to university with everything but a kitchen sink in tow. This time we were a bit more experienced at it, as it's Rose's second year, but this time she is renting a house rather than staying in the university's own accommodation, so we needed to think of packing a few different things than last year. Having just managed to squeeze everything in the car, we set off with some trepidation back to Dorset.

Poole Harbour
Wimborne Minster
I say 'with some trepidation' as a few days beforehand we had been phoned up by the letting agency to say the house owner was in the middle of building an extension and Rose's house wasn't finished, so we were a little worried about what to expect once we got there. 

We managed to get about half way to Dorset, when I suddenly realised in all the whirl that I had forgotten my spare medical pump for my intravenous medication. Now, this I know I cannot manage without, I get serious symptoms should I have to have my medication interrupted for any more than a few minutes now, so it isn't possible to reuse the pump already in use, as it would mean interrupting the flow for too long while it rewinds itself ready to use and to do this for each medication change for the few days we were going to be away is far too risky. So we had to do a u- turn and go back home to get it. Several hours later than planned and cursing myself and my IV drugs we managed to arrive safely in Dorset. 
Kingston Lacy

I haven't ever forgotten my pump before, but there is so much to organise and remember when you are travelling and you need to take a serious amount of medication with you, and it can be even more difficult if you aren't feeling too good, which I hadn't been that morning. In fact I haven't really been at my best for the last week or two and I had been considering whether or not I should even be going, but I felt determined I would whatever. Since I've been ill, doing things and sharing things with my family has become more important than ever and I really wanted to see Rose's new house and be there to help her move in. For me it would be yet another milestone I have managed to achieve, so there was no stopping me really. 

I always say to myself, 'what is the worst that can happen?' Well I could end up in bed for the few days whilst we were away or I could end up in A & E; both have happened to me before while we have been away from home and although unpleasant,  I still managed to live to tell the tale! I had had similar happen last week with feeling very unwell before we went into London to watch Rose's marathon, we ended up risking travelling in with me not feeling very well six or seven hours later than planned and I had to tell my girls to travel in without me and we followed later. The weekend turned out well in the end and we had a great time, so inspired by this I felt I really wanted to try and get down to Bournemouth. Sometimes it would be easy just not to bother, but the rewards when you do try and then it all works out are so much higher, you appreciate every little minute you experience and if it doesn't work out, then it doesn't work out and you just have to try again the next time.

Once in Bournemouth we managed to get Rose all moved in and settled. The building works aren't really affecting them too much and the house is spacious, in excellent order and at the moment very clean. Rose is sharing with a few boys as well as one of her best friends and they all helped bring her stuff in, which was good for Rob after his extra long journey. We spent a very wet Sunday shopping in the Range with a big trolley load of bits and pieces she needed and then went back to her house and completed all those finishing touches. Her room looked cosy and just how she had planned it. Her room mates are a great crowd this year and we left one very happy girl, who after having a difficult year last year, was thrilled to be in such lovely digs and with lovely people. 

We enjoyed a days rest on Monday, where we drove around Poole Harbour, visited Wimborne Minster, a lovely market town  and Kingston Lacy, a National Trust house and garden. A few more places on my 'Dorset' list have now been ticked off. We hadn't had room in the car for the wheelchair this time, but luckily being a disabled friendly National Trust place, we were able to borrow a wheelchair at Kingston Lacy so I got to see a lot more of it than I might have, which was great. And there are some bonuses to rising at 6am to make up medication, we were rewarded every day with a gorgeous sunrise over Sandbanks, where we were staying for the weekend. I will add we were just in a small self catering apartment not one of the luxury mansions you see on the television! 

Sunset over Sandbanks
All in all, it all turned out to be another good trip, we popped in to say our goodbyes to Rose and left her as happy as Larry and I left Dorset one very happy mum having achieved another milestone in our family life and knowing she was so happy and settled. Of course I am never going to hear the end of the 'forgetting of my pump incident', but I will just have to live with that one!

Friday, 13 September 2013

What to do with those Tomatoes?

The weekend was lovely, sunny and bright and breezy and after watching Rose in her marathon for the phaUK, we got chance to explore around Greenwich for a while. Greenwich has been on my list of places to visit for a long time, so I was really pleased to get chance for a good look around. We had already been all round the park while watching the marathon and had lunch at the Maritime Museum and I would have liked to visit this, but the weather was so pleasant we decided we didn't want to be stuck inside. Instead we chose to just wander aimlessly, with our cameras in tow, around the grounds, then on through all the ancient buildings and down to the riverside, soaking up and enjoying the busy,vibrant, Sunday afternoon atmosphere.

We headed towards the Cutty Sark, a famous tea clipper, and decided to see if it was wheelchair friendly enough for me to go on board and have a look around. The Cutty Sark was fully renovated a couple of years back and was very wheelchair friendly, with helpul staff directing us where to go, proper wide walkways and lifts to all the various decks. So we enjoyed a good look around and learned about its interesting history, browsed around the shop and enjoyed afternoon tea looking up to the stunning views of the underside of the ship.

As usual for me, I can't quite tick Greenwich off my list yet as there is still much more to see and do including the Maritime Museum and Royal Observatory, so we will have to go back again one day...

After weekend the weather suddenly turned cooler and autumnal with a vengeance and was wet into the bargain and it's beginning to feel well and truly Autumn just like the flick of a switch, summer seems to have disappeared, so we were glad we had spent the afternoon just enjoying the weather on Sunday. 

A few weeks ago after the summer holidays, I started to get into my cooking again and began with making a roast tomato and pepper soup as a starter when all the family were round for dinner. It's a good way to get using up all those tomatoes from the garden that are all ready and ripe at once! 

We usually have so many tomatoes that I don't know what to do with them all, but this year's crop was pretty poor: I don't know whether it was because of the hot summer weather or because I didn't tend them as well as I should. However, tomatoes are in abundance in the shops right now and are cheap and cheerful!

My soup obviously went down well, as yesterday Mr G said he had bought me a present when he came back from shopping, he then proceeded to present me with a big pack of tomatoes, saying I could make some more of that soup seeing it was feeling chilly and cooler. So feeling a dab hand at making this soup now and with the cooler weather and nights drawing in, I thought I'd share the recipe.

Roast tomato and pepper soup with garlic and basil

Pack of tomatoes (about 800g to 1kg)
A yellow pepper or equivalent mixed peppers
Stock (about a litre, adjust to ingredients)
Olive oil
Black pepper
Basil (fresh or dried)
Garlic olive oil or garlic salt
Crusty bread

Chop the tomatoes, pepper and onion and place in a roasting dish, drizzle with olive oil and season with black pepper and basil, roast in the oven for about 3/4 hour. Once roasted transfer to a saucepan and add the stock and bring to boil. Liquidise the ingredients, but save a small portion to one side for later. Reheat the soup. Serve and top with a piece of toasted crusty bread topped with a spoonful of the remaining ingrediedients and drizzled with olive oil. 

Easy, delicious and nutritious! Enjoy! 


Tomatoes are part of the nightshade family and are packed with goodness including vitamins, minerals and antioxidents. They are linked to good heart health and bone health and are known to have anti- cancer benefits. People often cannot decide whether a tomato is a fruit or a vegetable: well it is a fruit and botanically speaking it is a berry, but it is not sweet like most fruits, so it is treated as a vegetable! The French call the tomato, 'a love apple'; Italians call them 'golden apples'. So now you know! 

There is still time to sponsor Rose for her Run to the Beat marathon, so far she has raised £2365 for the phaUK: 

Tuesday, 10 September 2013

Run to the Beat

A calm and beautiful morning on the Thames
On Sunday, 8th September, Rose took place in the Run to the Beat Marathon in London, to raise funds for the phaUK, the charity that has given our family much support over the last three years since I was diagnosed with Pulmonary Hypertension. Her boyfriend, David, was also taking part to raise funds for multiple sclerosis. It is a half marathon, with over 19,000 runners taking part, starting and finishing in London's Greenwich Park. During the marathon, there is music playing to keep the runners' motivation going and help create a fabulous atmosphere.  

It was an early start, Rose and David were up early to eat breakfast before seven, then they would have some fuel for the run. The weather was looking good, it was a beautiful start to the day. By 8.30am they were on their way from Canary Warf, where we all stayed the night before so our journey wouldn't be too onerous the following morning, and they were making their way across to Greenwich where the marathon was to take place. They texted us to let us know they were ready and in their start positions by 9.45am.

The next step of the plan, if I felt well enough to do it, was for us then to start making our way across to Greenwich too and luckily I felt at my best this morning. I had had a very up and down week and just getting into London on the Saturday had been a real strain. We were worried about how we would cope with my wheelchair and how I would cope too amongst all the crowds of people, both on the railway and at the event, so Rob had done a lot of research where it might be best for us to stand and catch a glimpse of Rose without getting too caught up in the crowds. We didn't really know what to expect as no one in our family has competed in a marathon before, but we did anticipate crowds! We also had to try and perfect the timing, so we would be there in time to see Rose, but not so early that it might get too much for me to manage.

So with some precision planning on my husband's part, we found our way easily to Greenwich with me in my wheelchair; the Docklands Light Railway being very wheelchair friendly with lifts at either end of our journey. We had Sarah and Oli with us, so that made things a lot easier too. We managed to find a good position at the 11th mile and knew Rose was still about fifteen minutes away. It felt exciting just to have made it there, the atmosphere was buzzing, music pulsing and crowds cheering the runners on as they got near the end of their journeys. It felt an inspiring and electrifying place to be and I had to pinch myself that I had actually made it into London and then across to Greenwich and was actually there. They managed to get my wheelchair to the front with no problem and I had a 'birds eye' view of everything, I think they were all a little jealous as I got to sit, a bit like being in my very own royal box!

It wasn't long before Rose and David came running up, still looking fresh and full of energy and they managed to see us all as we cheered them along. Caught up in all the euphoria, Sarah and Oli decided to try and get to the finish line and see them finish, so off they went on ahead. Lingering behind in my wheelchair, but feeling really good, I was game to try too, although lots of people were doing the same and the crowds were getting busier.  Rob managed to weave in and out of the crowds with me in tow, sometimes doing a little sprint himself until I thought my wheelchair might actually break! He raced me up Greenwich Hill and we managed to stop and glimpse Rose and David flying past yet again and then another glimpse of them going up the hill, which was a bit of a hike on the last part of their journey. Sarah and Oli then saw them reach the finish line and cheered them through. We managed to get there just afterwards, which was no mean feat with a wheelchair, the crowd and a hill!

We then got caught up in the crowds a bit, but Rob did a good job of manoeuvring me around and we eventually found Rose, who was miraculously standing a few seconds away from us in the crowd unbeknown to us! Then it was all downhill back down to Greenwich Village. We followed a snake of turquoise green T shirts weaving their way down the hill, just as we had chased a sea of turquoise green  going all the way up it.  Here we all met up again eventually and had a rest and drinks at the Maritime Museum; David's parents and sister joined us too and I don't think Rose and David could quite believe they had completed the marathon and got their medals after all that hard work and training throughout the summer. We were one very proud pair of families!

Outside the Maritime Museum

Views from Greenwich Park


Greenwich Hill
Rose completed the marathon in two hours twenty eight minutes and has managed to raise £2,275 so far for the phaUK and we all had a fantastic day out into the bargain too! A big thank you to all the many people who kindly sponsored Rose. We have been overwhelmed by your kindness and generosity.   

There is still time to sponsor Rose through her Just Giving page below: 

Wednesday, 4 September 2013

September and Late Summer Sunshine

apples feast at Levens Hall


Memories still linger flagrantly to summer
Winter calls, but seems far away; distant on the horizon
A cool nip in the air, but the sun still shines
Rising in its warm, mellow, hazy mist
Cooler in the shadow of autumn's glare. 

New starts, new beginnings, new hope
New promise with the fresh breeze
Time for leaves to turn colour
Time to turn over a new leaf
September, signal for new expectation.

Colours awash and ablaze
Deep burnished golds, coppers and russets
Muted with soft heather tones
Bees and butterflies grasping summer's end
Startled spider's webs dripping droplets of dew.

Orchards fit to burst
Seasoned bounties of apples and pears
The windfall feast for a blackbird 
Month of tomatoes and berries
A month ripe with opening and change.

September promise.

butterfly on the verbena in the garden

We seem to have stumbled into September after a busy and relaxing summer. They are saying in the news that this summer was the hottest one for the last seven years. Well it's been a good one for us and we have really enjoyed and tried to make most of all the sunshine and enjoy our summer memories.

All sky and sea at Silecroft, Cumbria
A bit blowy at Frinton on Sea, Essex

Waiting patiently on the beach

September is another favourite month of mine, it always hails a new and fresh start for me; I don't know whether that's because of years in school, the new school year starting in September or whether it's just that September follows summer. Summer, which is usually more carefree and laid back, because of the longer days and now the nights are starting to draw in again, so it feels like time to start gearing up a pace and get busy again.

Lilies in the pond at Sizergh Castle, Cumbria

Ducks in flight at Sandside, Cumbria

So for us it's time to try and get back some routine so Rob is back at work and we are busy getting things ready for Rose going back to university. This week we've been busy getting the garden into some order ready for autumn after such a lovely summer and we've put in some new plants and tidied up - well Rob has, I did the pointing and a little bit of planting up some new plants!  We both suddenly got the urge to get cooking at weekend, I don't know whether this is because of Masterchef and the Great British Bake Off that we have been avidly watching or just renewed September enthusiasm.

An entertaining sunset at Arnside, Cumbria

I'm still hoping that my transplant will happen soon, my hope has been rapidly depleting as all this time has gone on since I was listed, but now we've got to September, well for me what a perfect time for change and a brand new start! Then again they are debating in the news now whether we are going to have an indian summer or not. I am relishing the thought of that too, that maybe summer isn't quite at an end and maybe there is just a little more to look forward to and enjoy and maybe I don't want to miss all the fun just yet. We will have to wait and see ...

Rose is running in the 'Run to the Beat' marathon on Sunday to raise awareness of Pulmonary Hypertension and funds for the phaUK, an organisation that is helping and supporting our family through this illness. I want to say a massive thanks to all of you who have sponsored her, it really means a lot to us and we are so grateful for your support. 

You can sponsor Rose through her Just Giving page below: