Like everyone, I love holidays. However, life is never simple, especially with an illness, and our intended vacations this year haven’t really gone to plan! So far we’ve planned four week-long trips away.. and have had to cancel all four at the last minute. 2016 has been a crazy year, with more than my fair share of hospital appointments! These are often booked last minute, especially when you’re in the midst of a rapid decline. Consequently each of our planned holidays ended up clashing with a last minute hospital appointment that couldn’t be rearranged! Yep all of them! Luckily I love planning holidays- so just got on with arranging the next trip! And fortunately Phil’s work allowed him to postpone his holiday allowance each time, so we have our fingers crossed that we might manage a week long vacation at some point! However we’re now getting paranoid that the hospital have access to our holiday calendar… and have started joking that I’m going to get the call for my transplant when we’re due to be away for our next planned holiday! 😉 Unfortunately the most recent of those cancelled trips was supposed to be spent visiting Phil’s family on the Isle of Man.
My husband Phil is from the Isle of Man, a beautiful island that we love to visit. Famous for having no speed limits, street motorbike racing, and the glorious TT race. We’ve only ever been able to visit this event once, as it is normally on in term time so wasn’t practical when I was a teacher. However last year we joined the race to buy ferry tickets, and were lucky enough to book some to allow us to go over to visit for ten days. Unfortunately though, the trip coincided with my second longer transplant assessment at Harefield, which couldn’t really be postponed as I was being fitted in as a priority. Luckily my lovely GP wrote me a medical note which enabled us to get a full refund. However we then couldn’t rearrange the trip for a later date, as since being on the transplant list I have to stay within a few hours drive of Harefield hospital. The Isle of Man is a full day’s travel away! And to be completely honest, after being so ill over there at Christmas, I was rather reluctant to go over to somewhere out of our medical environment when I’m so poorly.
Sadly, this meant that we were not going to be able to spend the fortnight with Phil’s family as planned. We normally try to visit the island once or twice a year. Since I’ve been ill, his parents have been regular visitors to the UK, visiting every few months. However his brother and sister-in-law rarely venture over, as they still work, so it is a lot trickier for them, as a visit can’t easily be done in a weekend. To make matters more complicated, Debbie, my sister-in-law is six months pregnant and so not too keen to leave the island. She didn’t want to leave her medical environment, and I didn’t want to leave mine! It was beginning to look like I couldn’t get to them and they couldn’t get to us! We wouldn’t get to see our little niece this year! However in the end, Debbie kindly offered to fly over for a quick trip, if we could do it the next weekend! So plans were changed, and we managed to arrange a couple of quick weekends together so we could spend time with our beautiful niece and the rest of the family.
The first weekend at the end of June, was spent in a smart hotel in Wiltshire. It was wonderful to spend time with little Mei-Yan, who was almost one. Amazingly, despite not seeing us for six months, she was immediately content to hang out with us. She was a complete bundle of happiness, constantly laughing, and trying to get up to mischief! She loved Lottie, and kept trying to crawl after her. Thankfully Lottie is great with children and let her stroke her… if she could sniff her first! Having spent June having a mad month and being told I had passed the transplant assessment the day before, my body was exhausted. I was so tired that my body just needed to do nothing: I was ill for the whole weekend! Consequently I spent the time in my hotel bed, venturing out only for meals in the restaurant. The others had a fun Saturday visiting the Averbury Stones, but instead I bought newspapers and spent the day reading them and sleeping. We did manage to have a mini birthday celebration for Mei-Yan, which was lovely, but even the half an hour of eating birthday cake and opening present left me exhausted and I needed to sleep afterwards. It was a short and tiring visit, but was great to have a catch up with the Manx family.
Then last weekend we managed another quick weekend together. By now Debbie was too pregnant to leave the island. But Phil’s parents were able to fly over as well, which was a great help for Andrew who was bringing little Mei-Yan on his own! This time we stayed in a fabulous hotel near Coventry, so it was only a very short drive for them from the airport. The weather was glorious, beautiful blue skies and warming sun. The hotel had some picturesque grounds, which we enjoyed chilling together in; Lottie running around sniffing the flowers, and Mei-Yan trying to eat the leaves! Happily I felt a lot stronger on this trip, and was therefore able to join in nearly all of the activities. We ate far too much tasty food in the restaurant (M-Y sampling everyone’s dishes!), drank drinks in the wooden lined bar and took Lottie on dog walks. Mei-Yan was her usual happy and adventurous self. In the six weeks since last seeing her, she has now mastered the crawl and the climb, and enjoyed showing off her tricks, scaring us as she clambered down from the high bed! Both mornings, Phil awoke early, waiting to hear his niece’s cries in the next room, so he could sneak in, and bring her back to our room to play with for an hour. It was great that I actually had the energy to play with her this time, and she didn’t leave me exhausted like before. On the Saturday we had a walk around Coombe Abbey Country park. It was a perfect route for a hot day; the woods sheltered us from the strongest rays and we finished with a well needed ice cream! Afterwards the others took Mei-Yan to her favourite place- an indoor play centre- but Lottie and I escaped the madness and instead had an afternoon nap back at the hotel and watched some of the Olympics! It was fabulous to spend time with our Manx family, especially when I’m not sure when I’ll see the littlest one again. Due to the distance of the Isle of Man from Harefield hospital, I’m not going to be able to visit again whilst I’m on the transplant waiting list. However I’m looking forward to visiting with new lungs… and looking forward to being able to run around on the beach with my little niece, and the newest addition due later in the year.
When illness strikes it does’t just affect the person who has the disease. There are knock on consequences for the immediate family and close friends. Plans are always being cancelled, postponed or changed. Allowances are always being asked for. Demands are always sadly been required of others. However another good that has come out of my illness, is that it has shown how wonderful our family and close friends are. Our Manx family happily and kindly changed their plans, and came to us when we suddenly couldn’t come to them. And this same kindness and consideration and been shown to us repeatedly with our UK family and our closest friends. Unfortunately when you get a illness, everyone around you suddenly has to get used to adapting and carrying on.
I’m hoping my hospital clash trend is not set to continue, as I’ve daringly just booked a couple of lovely weeks away in a cottage for later this summer. But if the call for transplant does come when I’m about to go away, then that is a holiday clash I’ll be very happy to change my plans for!