I'm a lifestyle blogger – blogging on health, writing, books, travel, photography, gardening, nature and simple musings on life. I just so happen to be the recipient of a heart and double transplant and an avid campaigner for organ donation.
We’ve just had the summer solstice and the longest day of the year. We’ve been enjoying some beautiful and sunny warm weather this June, which seems to have continued on from spring. It feels like summer has been here for a while now.
The garden is in full bloom, bursting with Roses, honeysuckles and an assortment of beautiful flowering perennials. Colourful annual plants are tumbling out of pots and hanging baskets.
The lovely warm weather has made it a joy to be out in the garden every day either tending and tidying plants or simply relaxing and enjoying the birds and flowers.
Lots of you have been asking about my health and I’ve deliberately kept quiet on this front, as I don’t want to jinx anything, but I’ve been feeling much better now than I have in a very long time. After all the battles with rejection, infections and pneumonias of the last year or so, somehow I’ve pushed through and things seem steadier now and I’m feeling much fitter and stronger.
The weather has certainly been a good motivation for getting out and about and increasing my exercise capacity, pushing those lungs and building back my strength. I’m so grateful for this, it really does make me appreciate life and the chance to enjoy all it offers. I’m hoping things continue like this alongside with this lovely sunshine and the summer days to come.
On a recent stay on the North Norfolk coast, we enjoyed some lovely warm weather. Each day as the tide turned though, it brought in with it rolling mists, which descended over the salt marshes.
It gave a sense of eeriness to the coastline and surrounding countryside, but also some fascination, as the views and scenery transformed dramatically before our eyes. A swift change from feeling warm sunshine to the touch of the damp and moist air.
Here are some pictures that hopefully capture some of those moments, the changing scenes, wildlife and nature.
Before we reach the end of May, the month of bluebells, here’s some more bluebell pictures…
Stepping into what’s known as this secret valley at Rannerdale when the bluebells are in bloom, is like stepping into the Garden of Eden or a Secret Garden. On a sunny day with the bluebells at their fullest, it’s a feast for all the senses – stunning views, heavenly scent and neverending sweeps and swathes of blue across the fells.
It’s a different scene to the one we would normally conjure up when thinking of bluebells – no shady woodlands or trees about to burst into leaf, just acres of English bluebells growing in profusion across the open valley and fells.
The bluebells have a story, according to local folklore, the bluebells are said to have sprung from the spilt blood of slain Norman warriors. The valley was a location where after the Norman invasion of 1066, Britons ambushed and defeated the Norman army at the Battle of Rannerdale. It’s difficult to imagine war raging in such a peaceful, beautiful and tranquil place.
Rannerdale Knotts is a stunning location, with bluebells aside, there are far reaching views over Crummock Water and towards Buttermere and Loweswater.
We’ve had such beautiful and sunny weather so far this May. Gardens are full of colour now and as one plant blooms and fades another starts to spring into life. There’s a continuous flow of vibrant and beautiful flowers, shrubs and trees.
The gorgeous weather has been a great excuse to get out and about with my camera and visit a few special gardens that are local to us. There’s nothing more uplifting than a sunny day, a walk around a beautiful garden and grounds of an historic house and a little photography.
It’s been lovely to see the blossom trees and tulips of early May, followed by one of my favourites, wisteria clambering and flowering up walls together with sweeping carpets of bluebells and fields of cowslips. The new leaves on the trees and shrubs are so fresh and bright green at this time of year too.
Here’s a few pictures taken at Wrest Park and Hatfield House during May…
I can’t go through the month of May without enjoying the beautiful sight and scents of bluebells. I always equate May with bluebells. Our British weather is a topic of discussion and often complaint, but it’s due to our climate that we are blessed with woodlands, hedgerows, heathlands, fells, meadows and such a wide variety of countryside. These can give rise to perfect conditions to nurture sweeping carpets of bluebells.
There’s nothing like a visit to our local woods on a sunny day to experience the sight and scents of bluebells. It’s breathtaking every year, especially as the sunlight can still reach down through the trees adding to the bright blue glow.
I’m trying to build up my strength and exercise after my recent blip, so what better than to visit our local nature reserve, Mardley Heath, and take a walk around the woods and see the bluebells. Very uplifting!
May has arrived and along with it, some beautiful warm and hot weather. The garden has suddenly burst into full bloom and has transformed itself from a bleak winter garden to a garden rapidly filling with colour. There’s that lovely backdrop of fresh green and newly opened leaves on all the trees and shrubs too. Spring is definitely here now and I think we’ve even had a taste of the summer to come with the Bank Holiday heatwave.
The blossom trees are laden with flowers and the apple blossom tree is the fullest I’ve ever seen it. I don’t know whether it’s because of the weather conditions that it’s so laden with blossom or whether I’m just misleading myself after it’s felt such a long wait to see it after all the harsh weather and winter.
My health has taken a dip over the last month or so, with a chest infection, which then sparked organising pneumonia to flare up in my lungs again, so being on intravenous medication for a few weeks and mostly confined to home, the lovely weather we’ve had on and off has been a huge bonus. It’s been lovely to watch the garden change and come to life and hear the birds singing at their fullest.
Luckily, I managed to avoid staying in hospital and have got myself back on track again now. Attempt number five at the fundoplication operation had to be abandoned due to the pneumonia, so I’m now waiting for a new date to proceed. I just need to build my strength and fitness back up, so onwards and upwards hopefully again now.
It’s been so uplifting to enjoy some sunshine, warm weather and longer days and to be able to potter around outside and enjoy lovely barbeques and eating most meals outdoors. There’s so much blooming in the garden now: poppies, forget-me-nots, peonies, clematis, bridal wreath, phlox to mention a few. It’s hard to keep track as something new keeps appearing each day. May is such a spectacular time in the garden.
It’s still springtime too and there’s still that delicious anticipation of the whole summer stretching out ahead…
After all the snow, heavy rain and misty, murky weather, spring has finally arrived at long last. The garden is finally coming alive with colour and plants are finally blooming.
There’s nothing like a daffodil to brighten up a dismal day and we’ve had many of them up to now. The daffodil is a hardy plant, however, perservering through the snow, frosts and wet of late February and March, shining through with its reassurance that spring and warmer days are definitely on the horizon.
The last few weeks has seen constant rain, low and heavy cloud and a dreary mist never far away, but a garden full of bright yellow daffodils has brought some cheer and sunshine and life to the garden at long, long last.
A few days of brighter, warmer weather and suddenly the garden has been bursting into colour, the buds are opening on the trees and shrubs are beginning to flower, starting with the forsythia with its small delicate flowers making another blaze of yellow amongst the daffodils.
Now the tulips are flowering and after a beautiful day’s sunshine have opened up in full, enjoying the sun’s warmth and glow. I brought these tulips back from a visit to Amsterdam’s flower market. Our holiday to Amsterdam marked the first anniversary of my heart and double lung transplant, so when I see the tulips blooming they remind me of a very special time.
The first year these tulips bloomed, there were just five flowers and each year they’ve multiplied and multiplied. This year, despite the awful weather, they’ve bloomed and bloomed and I’ve counted thirty five flower heads so far. They have thrived, which is very symbolic to me, having planted them to mark my first transplant anniversary.
Other little snippets of colours are appearing too – the bright blue of grape hyacinths are popping up around the borders and the magnolias are full of bud and about to flower.
With a few sunny days, we’ve tidied up the summerhouse after the long winter. It’s been lovely to sit up there again with a good book and enjoy the view of the garden springing into life once more.
Ted has enjoyed playing out and getting up to mischief, while Rob has been busy mowing and tidying up after the winter months. I love the feeling of April when there’s the whole anticipation of the spring, summer and autumn ahead to enjoy life outdoors and the fresh air and beauty of the garden.
I love to have daffodils and tulips around the house too, echoing the outside in and cheering up any dismal days and adding even more colour to those bright sunny days.
Spring is such a beautiful and promising time in the garden and the flowers give much hope and anticipation for the months to come.
The weather forecast this week is promising full sunshine and warm temperatures over the next few days at long last. I think most people are looking forward to enjoying some proper springtime. I know I am.
We enjoyed a lovely time this Easter, savouring some very special moments with family.
I wanted Easter to feel extra special after what’s felt like months of starting, stopping and restarting and stopping again with my health. Feeling so well again and having had a good clinic and now having some respite from the stomach operation, I just wanted to make the most of life and put some of the health related stresses behind us.
Also, casting my mind back to last Easter, when I was just out of hospital and still too unwell to enjoy it properly, it felt especially important to make the most of this Easter, live life to the full and try and become even more healthier.
With this in mind, we treated ourselves to a lovely few days on the North Norfolk coast, renting a house there and Sarah, Oli and baby Freddie joined us, which was lovely. North Norfolk is a favourite place of ours. We enjoy the walking, the spectacular beaches, countryside and wildlife, and in between all the exploring there’s plenty of good pubs and cafes to relax in too.
It’s a very dog friendly place, so we always bring Ted and Alfie with us and get lots of enjoyment from trying out different walks with them. Many of the pubs and cafes allow dogs inside too, so we can keep them with us when we want to eat out or go for coffee, which all adds to the fun.
We enjoyed some beautiful sunshine and explored both new places and favourite places we’d visited before. I especially enjoyed being out and about again with my camera in such stunning places and I found being by the seaside and in the countryside very uplifting and motivating with all fresh air and extra walking – all adding to improving my health hopefully.
One very special moment was seeing Freddie toddling on the beach for the first time at Brancaster in his first pair of tiny wellingtons. He loved it and both the dogs loved running free alongside him. We had a lovely Sunday lunch afterwards with the dogs sleeping at our feet and Freddie in his high chair tucking hungrily into his food. Simple pleasures, but very special ones.
Thornham village where we stayed had a good dog friendly pub – The Orange Tree – they even had a menu board especially for dogs. It also had a great deli with a dog friendly cafe, so on some days we found ourselves just enjoying some local coastal walks around the salt marshes and then either popping into the pub or deli for meals or drinks on our way round. Again, simple pleasures, but all very relaxing.
Following our lovely and relaxing Norfolk trip, it was time to enjoy Easter weekend. We weren’t so lucky with the weather, but that didn’t really matter so much, as we had a full house on Easter Sunday and Monday, with everyone stopping round. On Easter Saturday, we had a lovely day cooking and preparing food and we enjoyed a lovely family meal and Easter egg hunt on Easter Sunday and a very relaxing and lazy Easter Monday.
Now we’ve reached April, I’m really hoping for some WARM and sunny weather and getting back out in the garden again.
Last week we had the spring equinox on the 20th March, marking the astronomical start of spring and the days becoming longer than the nights from now on. The signs of spring are all around us with new buds, blossoms and shoots on the trees and all around the garden. The daffodils are beginning to bloom, which usually signals that springtime has definitely arrived.
The weather seems to be confusing us though, giving us the odd day of warm sunshine and a promise of spring in the air, only to knock our hopes back with strong Siberian winds, cold and snow.
I’ve been trying to do plenty of enjoyable things since the stress of the last few weeks with the cancelled operations. We’ve enjoyed a few meals out and I’ve enjoyed cooking lots of my favourite recipes. Eating and drinking at the moment is giving me lots of pleasure for a few reasons.
For months and months up until recently I’ve been battling infections and having to have various concoctions of antibiotics and drugs, and this combined with a few bouts of norovirus had resulted in me losing my appetite and only being able to tolerate very plain and simple foods. With all this I’ve also lost so much weight, my clothes have actually started falling off me and I’ve had to start altering many of them to fit me.
Recently, I’ve been feeling so much better, managing to exercise more and with big reductions in my immunosuppression drugs and a good few weeks now of no infections, my appetite has come back and I suddenly seem to be able to tolerate eating normally again. That feels wonderful after months of eating so frugally.
Obviously, if my stomach fundoplication operation had gone ahead, it would have affected my diet for a while again and at this point I would probably still only be able to eat pureed and semi-solid food. At the moment something as simple as eating and drinking feels pretty special and with it comes the guilty pleasure of having been given some respite from the liquid and pureed diet that I hadn’t been looking forward to very much.
We’ve also enjoyed a few visits to the theatre and days out when the sun has been shining. On a visit to one of our favourite places, Wrest Park, we actually managed to have lunch sitting outside, it was so mild and spring like.
I had a full clinic review at Papworth last week too and had the great news that my lung function has improved. It’s the best it has been for eighteen months. I was absolutely delighted about this and it’s inspired me to keep on pushing my exercise regime and strive to improve my lungs even more.
I’ve a new date for my surgery now and UCLH have been taking my complaint very seriously and have spoken to me on several occasions to both apologise for the mistakes that have been made and to assure me that procedures are in place to avoid the same happening to other patients in future.
I’ve had hospital every week for the last six weeks, but now have some respite until May when my surgery is planned to take place. It feels like a more relaxed time now. Time to enjoy Easter and special time with family and friends and generally make the most of a good run of health. I now have a good few weeks to try and build on becoming even fitter and fitter in readiness for the surgery.
Hopefully better weather will be on its way too, enabling us all to venture out more and enjoy this special time of year.
Have a happy Easter everyone!
In the meantime here’s a few spring photographs (some from Wrest Park) to enjoy…
I thought I’d be in hospital again this last weekend, as I was rescheduled to have my stomach fundoplication operation last Friday. This was following it being cancelled the previous week at the last minute just before I went down to theatre. The whole incident had felt very stressful, especially with the added stress of struggling on public transport to get to London and back in the heavy blizzards, snow and freezing temperatures. The whole incident had taken some ‘coming down’ from.
I was contacted the day afterwards though, with many apologies and a promise of now being a ‘top priority’ and that I would be scheduled to be ‘first on’ for my next appointment. I therefore agreed to a new date of Friday for the operation to go ahead again and all the papers were sent out to me confirming it. In some ways I had reservations, as I needed to start the mental and emotional build up all over again, so soon after the big ‘come down’. It’s an operation I know I need, but don’t particularly feel very enthusiastic about.
After all the years of procedures and operations on my heart and lungs, I do feel reluctant about having other parts of me operated on. I worry it will cause more things to be monitored, more clinics and doctors to be under, more things to possibly go wrong.
It might seem that I’m ungrateful to feel like this, but I’ve had a difficult run over the last eighteen months with my lungs and I’m voluntarily going to put myself out of action for a while yet again when I’ve only just got back on my feet.
There also comes some high risks with this whole procedure being an immunosuppressed patient, a heart and lung transplant patient and a patient with poorly functioning lungs, so I’m actually quite frightened about this and quite scared of ending up in a worse state than before.
A risk of chest infection is high due to ventilation during the process. The thought of going through something like the pneumonia again, that I experienced last spring and that damaged my lungs is terrifying. There aren’t any guarantees, but the plan is that I will be looked after in intensive care and all the risks will be of high consideration throughout.
So why am I putting myself through all this? My lungs are struggling to work properly now, they have less than 50% capacity. There are several problems including damage from rejection, pseudonomas, damage from infection and damage from stomach acid. Lung transplant patients often suffer from the stomach problem due to the actual transplant operation and new organs displacing the stomach and the continual use of necessary steroid medication damaging the sphincter muscle. If the problem is left uncorrected then in time the lungs will continue to be damaged and reject.
All three of my transplant consultants are in agreement that the operation will help prevent this happening and basically if I don’t have it done then my lungs will continue to decline in function and reject again. This operation is therefore a needs must despite all my reservations.
So off we went back to London for the fourth attempt at this operation, it had had to be cancelled a couple of times previously due to my ill health too. The weather was mild and dry so we had no extra stress and hazards with the travelling like last week. We travelled down the day before the planned operation, as it was the usual 7am and ‘nil by mouth’ start on the Friday morning.
It was Mother’s Day weekend coming up and knowing I was going to be in hospital and unwell on Mother’s Day, we met up with Rose and David and had a nice dinner to celebrate early. This felt extra special, despite the impending operation the following morning, as I’d spent Mother’s Day in hospital last year. At least this year we’d had chance to organise and celebrate. We’d had to put off any celebrations with Sarah, Oli and Freddie though, because they’d all had bad colds and viruses and I hadn’t been able to see them for nearly a month or so because of the risks being immunosuppressed.
7am on Friday morning and I turned up ‘nil by mouth’ for my surgery only to find out that I wasn’t even on the surgical list for that day. I was asked to sit and wait in case the surgery might be going ahead. We waited, waited, waited, waited…
Basically no-one did anything about it, there was no-one available to see us and no-one to explain what was happening or what had happened. After we kept on chasing the receptionist, who did her best to contact the relevant people, hours later I was eventually phoned by someone from the admissions department and advised it was all my own fault and I shouldn’t have ever turned up for the appointment as it still needed to be confirmed. I think I saw red at this point, as I was sitting there holding on to all the ‘confirmation’ paperwork!
Rob took the phone and eventually the person admitted they had copies of the ‘confirming’ letters on screen and that it had all been a mistake that they’d been sent out to me. So that was that, another cancellation, another load of stress and expense of hotels and travel for nothing and to add to it all not even an apology or any proper explanation from anyone! We were advised to speak to the hospital PALS office, which we did on leaving. We have formally complained as the whole incident, compounded with the cancelled operation the week before has left us stressed, angry and upset. We shall see what the outcome is and how they can explain what happened.
In the meantime, I have received a new date for yet another attempt at the surgery – attempt number five. Watch this space…
As the saying goes though, ‘every cloud has a silver lining’ and I was able to enjoy a lovely Mother’s Day weekend after all, spending loads of time with Sarah and Freddie and still being able to eat and drink normally and feeling well. A huge improvement on last year’s Mother’s Day when I was poorly in hospital and much more than I had expected for last weekend. Now I’ve time to take stock, enjoy and make the most of life for a few weeks before we try yet again.