A Favourite View

We were lucky enough to spend a few days in the Lake District earlier last week and amongst some very rainy, wet and cold days we were fortunate to enjoy some glorious winter sunshine. We decided to drive up to the Western Lakes and spend some time exploring around Coniston Water.

I say ‘explore’ but it is a favourite area of ours, probably my most favourite spot, so we know it quite well. Whatever time of year we visit, the views are always stunning. When we arrived on this particular day, the views took our breath away though. It was a still morning and the waters were calm, the sky very blue and the bright winter sunshine was reaching through the bare trees casting both light and shadows at tbe same time. The reflections of the mountains and trees in the blue and black pools of water were amazing.

We were the only people there, so very different from the crowds and the heat of summer. During the hot summer, the meadows here were full of families picnicking and the lake was busy with kayacks, canoes and swimmers. The small car park was packed full to the brim with cars. On this day there was nothing but peace. We were able to quietly amble around and soak up the views, Ted ran safely off lead and explored the meadows and splashed in the water.

I couldn’t quite make my mind up, ‘When was this place at its most loveliest?’ When you are swimming or kayaking in the lake, in the heat of summer, the skies blue with large fluffy clouds hovering over the mountain tops or on this peaceful, crisp winter day, which offered nature at its most magnificent and calm?

Autumn’s End

We’ve been so lucky to enjoy such a beautiful autumn this year and during November, I’ve been enjoying and savouring those last sunny days of autumn. There’s been so many glorious displays of colourful leaves both on the trees and on the ground.

The park looks different each day, as more and more leaves have fallen. Some fall gently like confetti on those still and sunny days and some have been blown away harshly on wilder, wet days. The trees are becoming more bare as we slide nearer to winter and the colder, darker months.

The landscape looks so different as the freshly fallen leaves cover the ground, there’s something special about walking in them, kicking them up in the air as you go. The flora in the woodlands has changed colours, now in its last flurry of golden browns and golds before much of it dies back and goes dormant for winter.

The low sunlight filters through the woodlands, illuminating those last snippets of russets, reds and golds. There are few leaves on the trees now as autumn clings on and we’re about to leave November.

Fields are still green, but the growing grass is slowing and the grass is wet and damp with mist and dew. The weather has turned colder and wetter this last few weeks, the skies grey and dull with mist and drizzle. The temperature has dropped and we’ve even had a few frosts. I prefer the cold frosts and a bright crisp day to the fogs and greyness of this late November. If it’s going to be winter very soon with the nights drawing in, hopefully we’ll have more bright, crispy cold days than those days when it doesn’t seem to come properly light somehow.

At least as we reach the end of November, and if there are grey, dull days, there’s the the glitz and sparkle of Christmas beckoning. It’s like a bright warming light in front of us. I already have my Christmas preparations underway. I usually start early having ended up in hospital seven of the last eight Decembers, I feel pressure to be organised ‘just in case’. I’m aiming very hard for a hospital free December this year and having just had a reasonable clinic, I’ve no plans to be back at hospital before January.

I’m established on preventative oral antibiotics and nebulised antibiotics to try and stave away the chronic pneumonia that keeps rearing in my lungs if I pick up an infection and to help with respiratory infections. So far, so good and I’m keeping busy with Christmas preparations and enjoying life while the going is good again. I’m also trying hard to avoid the winter bugs going around.

As we reach the last week in November, our family have already started our traditional run up to Christmas. We enjoyed our Papworth transplant group’s Christmas party on Saturday – the Christmas jumpers were out in force. On Sunday we went on the Santa Express at the Nene Valley Railway with all the family and little Freddie. It won’t be long before we’ll be bringing down the Xmas decorations from the loft and choosing the Christmas tree.

After a stunning autumn and great November, with Christmas looming there’s so much to look forward to as we head into December and winter.

Here’s to November

We start November and I feel that cringe deep inside about those long, cold winter months ahead and those shorter days and longer nights. I also have that fear of more bugs and hospital, which seem to have become a bit of a winter tradition in my life as much as Christmas is. As we move nearer to winter time, I find myself needing some motivation and inspiration to conjure up of all those good things about these darker months.

On the health front, I’ve had my flu jab and I’m on preventative measures to help my lungs over winter. I’m at clinic for checks every few weeks. I’m trying to keep fit, rest, eat well and avoid the bugs where I can. I know I’m as prepared and ready as can be, so it’s just a case of one step at a time and taking each day as it comes and fingers crossed to stay in good health.

As for the rest, the start of November has been such a pleasant surprise. It has been very cold compared to the milder temperatures we’ve had recently, but some of the days have been so glorious and sunny that we’ve wrapped up warm and been out and about in the countryside. We’ve been enjoying all what remains of the stunning autumn scenery – those golden trees and leaves against brilliant blue skies and fluffy, high clouds.

It’s scenes like this that have reminded me that the winter months can be just as much fun as those of summer and have me thinking of all the positive things to look forward to.

It’s lovely to dig out those warm winter coats and woollies, those snuggly scarves, hats and gloves in anticipation of cold, crisp walks with our dog, Ted. Those walks on a Sunday while a roast is cooking in the oven. The warm house and delicious smells when you return.

If you don’t want to cook, a country pub with a roaring log fire is hard to beat. I remember walking into a pub high up in the hills on our way back from Christmas shopping in Bowness last year. We were the first to arrive at lunch time and were given a huge welcome and told to sit by the fire – it was a perishing cold day. They piled more logs on the stove for us and we warmed ourselves while we waited for a delicious hot lunch.

Then there’s preparing hearty winter dishes for dinner, cosy dinners by candlelight and cosy nights by the fire with the curtains all drawn. The dog by my feet – or more often than not snuggled up beside me. Soft cosy clothes, socks and slippers. A cold and dark night is a great excuse to wrap up under a blanket in favourite chair and read or indulge in watching a box set or two. Of course, scented candles are a complete ‘must’ and that’s after a long pampering soak in a hot bath.

Then there are the glorious sunrises and sunsets to enjoy – the sunrises are late enough to catch a glimpse of when you wake up on a winter morning and the sun sets nice and early and well before bed time. Then the excitement of waking up to fogs, mists, heavy frost or snow – not so exciting if you have to go to work or travel – but beautiful if you can watch from inside and go about your day without the hazards to worry about.

Then there’s the glamour and glitz of ‘Strictly’ – now a recognised winter staple – the sparkly costumes, the fabulous dancing as we move through Halloween, Bonfire Night and towards Christmas.

Christmas – it’s probably the biggest most excitable thing looming as we step into November. November is the time I usually finish off buying all the presents and start the wrapping in readiness for December. I love a Winter Market or a Christmas Market. We’ve even managed to visit one already last week at Holker Hall and it was such a perfect sunny day – beautiful stalls with an assortment of wonderful goodies, warming pit fires, a live jazz band and delicious hot food and drinks.

I love the build up to Christmas – the anticipation, the preparations and then the actual festivities and day itself. Christmas shopping, Christmas carols, Christmas concerts and Christmas parties.

Well, I think I’ve found enough lovely things to think of for now to inspire and enjoy myself until January at least! What do you enjoy about the winter months?

Happy November everyone!

October Sunshine

October is nearly over – where did it go? It’s been such a glorious and beautiful month with plenty of warm mellow sunshine this year. The clocks have gone back soon and we enjoyed the benefit of an extra hour in bed. I always like it when we gain an extra hour, not so much when it’s the other way and we lose one though.

During this month I’ve still been recovering from a virus and pneumonia and so the beautiful weather has been a real boost. Being ill again has knocked my lung function down once more, so it’s been a case of keeping up the physio by exercising my lungs as much as I can. Hopefully some of my lung function will return and I’m hoping it will be back to the 48% or so I’d managed to get it to during the summer. Breathlessness is a thing I’ve now had to reluctantly accept back in life, as my lungs have deteriorated during the last few years. When my lungs work at around 50% though, I find I can manage and still get out and about for short walks and I’ve counted my blessings knowing from my past experiences and those of friends that things could be much worse.

The lovely sunshine has meant we’ve been able to get out and about with the help of my trusty old wheelchair to take the pressure off my lungs while they recover. I’m trying hard to build up my lung capacity again by walking as much as I can, but I’m still very breathless, so it’s literally one step at a time and the wheelchair in the meantime enables us to be out for longer and explore that much further when it’s a glorious day. I do intend for it to be only a temporary measure though. The weather has been very uplifting and great motivation while I tackle this blip.

I do love this time of year and autumn – Rob laughs at me and says, ‘But you love every time of year!’

I love trying to catch and hang on to those last snippets of summer. This year we keep saying, ‘This must be the last warm sunny day’. Each week, we keep on saying it, as the weather keeps on teasing us with higher than normal temperatures and warm sunshine.

At the same time as hanging on to summer, I’ll be excited about all that October and autumn have to bring.

I love the colours of October – the browns, golds, yellows, oranges, russets and reds and the way the flowers keep on flowering and flowering, pushing against time, as though they’re challenging nature before the first frosts appear. There’s been so much colour in the garden this October and so many gardens we’ve visited recently have looked stunning with banks of colourful dahlias, michaelmas daisies and remaining summer plants like roses, verbenas and salvias, which stubbornly refuse to stop blooming even though winter looms. The late flowers brighten up the garden and can light up the day.

Best of all I love the trees and leaves in October. I love how the colours change and how beautiful they look in the autumn sunshine when the sun is lower in the sky and has a deeper, golden hue. I love it when there’s a gentle breeze and the leaves trickle down slowly and then there’s carpets of leaves to wade through and kick beneath your feet.

I enjoy cooking more in autumn – October always seems to kickstart my cooking after the salad days and heat of summer – making hearty warming dishes and cooking up the apples from the garden – there’s a sense of preparing for winter and the colder days.

Of course, October always ends with half term holidays and Halloween. I like to join in the fun of it – Rob will carve out a pumpkin or two and I’ll make the obligatory pumpkin soup in the slow cooker. It’s a fun time for children and families and I love the see the wonderful colouful pumpkin and squash displays when we’re out and about. I like to have sweets in the house in readiness for the trick o’ treaters.

That’s my October. 🎃🎃🎃

Pulmonary Hypertension Awareness Week 2018

This week it’s Pulmonary Hypertension Awareness Week. Pulmonary Hypertension (PH) is the disease I had that resulted in me having to have my heart and double lung transplant. A transplant was the only route left after having had all the end stage specialist medications available for PH.

Having my transplant has always felt like an aternative treatment for my PH – yes a drastic one and not a cure. It’s a treatment that comes with huge risks and swaps one set of medical problems for another, but it’s a treatment that’s enabled a much better quality of life for me and has given me five extra years with my family so far – years I just didn’t have when I was terminally ill and suffering with end stage disease.

PH is high blood pressures in the lungs, which eventually causes damage to both the heart and lungs. It is an incurable, life limiting and terminal disease, which impacts enormously on the quality of life of PH sufferers. It is also a very rare and complicated disease, as there are different types of PH, different causes and differing treatments according to type. Treatment is very specialised and the specialist medication can only be prescribed from one of eight specialist centres in the UK, which includes Great Ormand St childrens’ hospital, as PH affects babies, children and people of all ages.

It’s also one of those ‘invisible diseases’ in many cases – well no-one can actually see your heart and lungs like they can a broken leg can they? As it’s rare and invisible, it can be very isolating for a PH sufferer; it’s often misunderstood, often mistaken for just ‘high blood pressure’ and even most medics don’t understand it or its complex treatments. Hence there’s a great need to raise awareness.

PH can be very difficult to diagnose too, it’s often mistaken for other conditions such as asthma, it often takes a few years for a patient to be diagnosed properly. In my own case it took nearly fifteen years! I’d never even heard of PH, let alone its signs and symptoms. The signs and symptoms are listed on the poster below:

Why would anyone be bothered about understanding more about PH when it’s so rare and only 7000 people on the UK are diagnosed with it? Why would anybody even care?

Well, I wish I’d known all about it and heard of it. If only. It may have prevented me being diagnosed as being in ‘end stage’ disease and being given only a few years to live. I could have perhaps received the specialised treatments earlier. You never know what’s round the next corner and it can happen to anyone.

Also, as it’s an invisible disease, PH can be very isolating. People kept telling me how well I looked, they didn’t quite understand the real impact it was having on my heart and lungs and how severely it was affecting my daily life. Every time I ended up in a general hospital, it was terrifying too, as most medics had never heard of it or if they had, they had no proper understanding of the various types of PH and the specialised medications. Raising awareness, therefore, is so important.

PH will always be a part of my journey in life; a part of my story; a part of where and who I am today. Despite how awful and scary this disease has been, there’s been some positive things to come out of my journey with PH too. I think I’m stronger and richer for it in many ways. It’s given me a real appreciation to be mindful and live in the moment and not dwell on the past or the future, but just to live for today.

Most of all it’s brought me many new and long lasting friendships. It still does. It never stops surprising me, how many people touch my life because of PH. Then there is the kindness and goodwill of so many people that have helped and supported me to overcome so much. They still do. The medical teams that have supported me, both my PH and transplant teams have also become like second families and Royal Papworth, my hospital, is like a second home.

I always say that if raising awareness of PH helps just one person, then all the campaigning and every minute of raising awareness is worth it.

Five Years On…

I relax in the sunshine on a seat looking over the salt marshes and out to sea. I soak in the stunning view, breathe in and out deeply savouring the salty air deep down in my lungs. Those precious lungs – well precious heart and lungs, but lungs more precious and fragile than ever now as they take the brunt of every storm my body weathers since my transplant five years ago. I can feel the gentle sea breeze and mellow sunshine on my face. Birds are gathering for their journeys to warmer climates, but singing and twittering as though it’s high summer. Beautiful September sunshine on this the fifth anniversary of my heart and double lung transplant.

I remember a time I’d been here in Norfolk before, over seven years ago now. Rob pushing me in my wheelchair along board walks to the beach when I took the call to say I’d been placed on the active transplant list. We were on holiday at the time trying to make the most of life or what I might have had left of it. We were trying to make sense of a situation where I’d found myself terminally ill and been given only two years to live if I was lucky. At the same time, I’d been told I needed a heart and double lung transplant and that on average the wait for this operation takes two years. Three people a day were dying while waiting for a transplant. The odds felt against me and I had to prepare myself both ways – preparing to die and preparing to live. A confusing situation but survival was my only focus.

Then my mind flits to four years ago when we came back here again. It was the first anniversary of my heart and double lung transplant. No wheelchair this time, my health restored. I could walk for miles by now, my strength recovered. It had been an incredible first year since my transplant. Suddenly I could do all those things that everyone takes for granted – simple things like showering, pushing a trolley around the supermarket, driving and even ironing and housework. Just simple things and I would even pinch myself that it was all actually real; that ‘yes’ I had my health back and I’d been given the best gift of all – the gift of life.

Five years on now and I’m back in Norfolk with my family to celebrate this incredible milestone. As I sit here, I think of all the incredible things I’ve been able to achieve because of my donor. From first simple steps like taking a shower to living my dreams and being able to travel abroad again. I’ve visited New York and many cities across Europe, plus been on a mediterranean cruise and travelled on the Orient Express.

I’ve seen Sarah and Rose both graduate, establish their careers, then Sarah marrying and then, the best of all, the birth of my first grandchild, Freddie and now we have another grandchild on the way. This is so exciting for me, life always brings so much to look forward to. Every extra day I’ve been given is special in its own unique way.

Our plans this holiday have come unstuck a little as I’m actually struggling with parainfluenza virus and alongside that pseudonoma pneumonia that always flares and inflames my lungs when I’m fighting any illness or rejection of my new organs. With the support and help of my transplant team though, we’ve managed to make it here. I’m on intravenous anti-biotics and allowed to do them from home or where home happens to be this week, rather than being hospitalised – it’s not new to me, I’ve done this often now over these years post transplant.

Being immunosuppressed can bring its challenges. I’ve already been back to Papworth again since we’ve been here, because my longline stopped working, my veins are poor now, but they sorted things out and got me back on track to continue our special celebrations with family. I have the Transplant Team there to thank for getting me through thick and thin and being able to reach this five years post transplant mark.

While we’ve been here, we’ve already celebrated Rob’s 60th birthday and our 28th Wedding anniversary – more milestones to add to many. Every single one is special. Five years post heart and lung transplant feels a very special milestone in more ways than one. Only 50% of lung transplant patients survive five years and beyond – it’s always been my long term goal to achieve this and it feels a huge achievement given the struggles with my lungs over the last few years.

I stare out to the sea and know that I’ve been fortunate, not only to have received my transplant in the first place, but to be given all this extra time with my family and a second chance to experience so many new opportunities and challenges that life brings. The horizon spreads wide in front of me and it fills me with hope for so much more to come. Well there’s a new baby to look forward to next spring, that’s going to be amazing for a start…

There isn’t a day goes by where I don’t thank my donor and their family for my gift of life.

September

It’s difficult to have a favourite month, as every month of the year has something special to offer. There’s always something unique to anticipate as each month looms on the horizon: from the festive month of December and all the hectic preparations for Christmas, to the peace, tranquility and perhaps even snow of January; from the anticipation of lighter evenings and warmer days during those spring months and the sunshine, heat and holidays of the summer.

September has always felt special to me though. I suppose it starts back from school days and the start of the school and academic year being September. September always feels like the time for a fresh start, new learning and new beginnings even more so than January when we’re supposed to reflect on the past year and think about new resolutions for the year ahead.

September was the month when Rob and I chose to get married and the month when I received my life saving transplant, so it’s a month that culminates in celebrations for our family. If I could have chosen which month to have received my transplant, it would have been September. For me, it truly is a month of new beginnings; a month to celebrate life and all it has to offer.

I always look forward to the weather in September, it’s usually cooler after the heat of summer, but still mild enough to be out and about enjoying the sunshine and fresh air. We’re usually lucky during this month as we often have plenty of sunshine and it’s calmer and quieter after the busyness of the school holidays.

We’ve just passed the Autumn Equinox, where the astrological year is marked by the sun crossing the earth’s equator from north to south. This marks the beginning of Autumn, nights drawing in and cooler weather. The meterological year marks the beginning of September as the start of autumn. Whichever way the start of autumn is defined, September is definitely the month where summer somehow manages to gradually ease into autumn. The garden defines this: we still have plenty of summer flowers – annuals still happily flowering along until the first frosts hit, but then many flowers have turned to fruits and berries, ripe for picking and preparing for winter.

For me, September is the month that leads us to crispy autumn walks, cosy warm evenings by the fire, enjoying the last of the warmer weather and then digging out those warmer winter jumpers and clothes. The beginning of a whole new season to embrace.