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.
It’s nearing the end of autumn as we head towards December. Although we’ve had some rainy and dull days here and there, I think it’s been a truly glorious autumn. We had a very dry spring, followed by quite a wet summer, which helped the thirsty trees play catch up. With that has followed some stunning tree displays, which have continued on through October and into November.
There’s been some glorious sunrises too, and Rob and I were recently in Cumbria and took the opportunity to watch the sun come up over the Dallham Estate on a very cold and frosty morning.
A simple pleasure, but a priceless one. There’s nothing more beautiful than seeing the breathtaking sight of a brand new day dawning. It gives the sense of empowerment to start afresh and put yesterday’s stresses and worries away and into the past.
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.
‘February brings the snow and makes our feet and fingers glow’
February ended with a bang as the ‘Beast from the East’, as it’s now been coined, took the country in its icy grip and we experienced a week of heavy snow and freezing temperatures. I thought I’d escaped those days of snow disruption now I don’t work any more and shouldn’t need to go out in it, but no I seem to keep getting caught out with snow and hospitals lately.
Back in December I found myself caught up in heavy snow when I was blue lighted to hospital with a respiratory infection and this week I found myself asking again, ‘What is it with me and snow and hospitals?’
I had a planned hospital stay for a stomach fundoplication operation, which is a preventative operation to help stop my lungs being damaged and going into more rejection. The operation has been cancelled twice already, because I was deemed too unfit to go ahead with it during the autumn. Suddenly, though, after a quick referral recently it was all back on and happening again.
Having serious surgery with a general anaesetic is always a stress for the healthiest of people. Although I was thoroughly committed to this all going ahead whilst I was reasonably healthy, I still had worries and concerns about all the risks that had been explained to me, especially the extra concerns with my poor functioning lungs and the fact they are transplanted together with my heart.
The surgeon and anaesthetist were all prepared though and provision had been made for me to be looked after in intensive care due to the high risks involved. I was comfortable with this – well as comfortable as I could ever be. There were extra factors to consider too: UCLH hospital is situtated in central London and has no car park. It’s a bit of a hassle with my breathing difficulties commuting in and out by train, so we decided to book an overnight stay in a hotel nearby the hospital so I could manage the process in stages with the 7am start required. We were unsure how long I’d be in hospital, but planned we’d have to get a cab to get me home, as I would be contending with not only the breathing difficulties, but the after effects of having surgery and consequences of this particular surgery.
Then came the news of the ‘Beast from the East’ and this started to stress me more than the surgery and its risks. The forecast looked dire for the end of the week and early weekend – when I should have been being discharged from hospital and probably in a very fragile state. Because of my lungs, I’m already labelled as one of those ‘high risk’ patients in severe weather. All I could think of was being stranded in snow. We’d had to put Ted in kennels too and although he’s used to kennels, I wasn’t entirely happy about this with the freezing temperatures.
I still felt I needed to go ahead with it though, so because of the weather we set off into London a little earlier than planned and made it to the hotel with no problems. The following morning all went to plan and we arrived at the hospital in good time at 7am. I was ‘nil by mouth’ from midnight and it had snowed overnight again and it felt perishing cold.
Not being able to have anything warm to eat or drink, made it feel even colder and the hospital has huge glass windows everywhere, so it was freezing in the waiting room and draughty corridors too. Everyone was sat with their big coats and snow gear on. It began to blizzard with snow outside and continued all morning as we all watched from the window and waited to be called.
I saw the various medical staff that needed to see me and was all prepped ready for the operation, which was planned for midday. Early on in the morning though, my surgeon had advised that my operation would only be able to go ahead if there was an intensive care bed available.
I knew when I’d been told this and actually sitting there watching the severe weather, that there was a strong possibility this would happen. Time went on though and all the signs seemed to indicate that things would go ahead.
Then my name was called and I stood up expectantly, all ready to go down to theatre, but soon realised from the expression on the surgeon’s face that it was all going to be cancelled. They weren’t prepared to undertake it without an intensive care bed being available and there had been too many emergencies already that morning and no bed was available.
In some ways I was disappointed, as it had been a big effort and expense to manage to get there in the artic conditions, but somehow inside me I felt this huge relief too, as I could just get home to safety and comfort hopefully before the worst of the weather set in for the week.
I realised how much the weather had been stressing and troubling me. Not difficult when I was probably already stressed about having an operation I didn’t particular want to have, but is a needs must and with the dire weather news and forecasts being broadcast on TV continually.
So with some very mixed feelings after such a huge build up and still heavy snow falling, we decided to try and head back home while the traffic was still moving and trains still running. That wasn’t before warming up, after being ‘nil by mouth’ for a long time, with some hot food and drinks just in case the going got tough en route home.
Now I’m home again, I’m just pleased to be safe and warm. I don’t feel annoyed or distressed about the operation being cancelled. These things happen and someone in greater need than me has been helped. I know that when I had my transplant operation, which went on for over 10 hours during the day time, that numerous routine operations might have been cancelled while my life was being saved.
My operation has now been rearranged already. In a way I’ve had a dry run and know more what to expect and I will be able to focus on the operation itself now, rather than worrying about issues like the weather.
One thing stood out very starkly during our London visit and that was the plight of the homeless. The weather conditions were extreme and we saw many homeless people taking refuge in the corridors and restaurant of the hospital. It made me count my blessings and humbled me.
Whatever the situation there’s always so much to be thankful for – a bit of snow and a cancelled operation when you have a home to go to and a supportive and loving family to take refuge with, isn’t anything at all compared to what the homeless face in this freezing cold weather.
So operation attempt number four will be happening soon; we’ll see what happens; whatever will be, will be; it will all be sorted somehow with snow or no snow.
In the meantime goodbye to a very snowy freezing February and watch this space for the ongoing hospital saga…