Monday, 12 May 2014
More about Paris...
We got back home from France safe and sound and for me relieved that everything went well. This was my first trip abroad since being diagnosed with Pulmonary Hypertension four years ago. On diagnosis of having a heart and lung problem, I was told straight away by the cardiologist that I had to cancel a holiday to Spain we had planned and then on formal diagnosis of Pulmonary Hypertension I was told I wasn't fit to fly anymore. Once on the transplant list, there was no chance of travelling out of the country as I needed to be in the UK at all times in case a match came in. I also really didn't feel well enough to be travelling out of the UK while I was so ill, or that it was a safe or sensible thing to even contemplate given my circumstances.
Rob and I loved travelling and exploring new and interesting places and it was a difficult thing to accept that I may not go abroad ever again, but we decided we would try and make the best of what we could do rather than what we couldn't and we tried to explore and visit new places that were nearer to us. We thoroughly enjoyed doing this - we have always enjoyed holidaying in England too - and we set out to make the most of our circumstances while we waited for my transplant call. Getting out of the house and seeing new places always gave me a lift and helped me to get through that most difficult time of waiting and also gave us some wonderful memories to cherish amongst all the down times we were dealing with.
I think I'd already really accepted that I'd never go abroad ever again. I think it is a way of coping, you won't be disappointed and let down if you lower your expectations of what the future may hold. Over the last year or two we had been given one blow after another as to where my future was going and it became easier almost not to expect too much, you begin to prepare for the worst, then anything you are told that is better than that is good news.
Somewhere deep down though it was a bit of a dream that one day I would be able to travel farther afield once more, although I didn't really ever believe it and we used to talk about visiting places like Hong Kong, New York and South Africa one day. Rob would make lists of where we would go once I got my transplant. He really believed that is what we would do, while I would just humour him really, thinking it would be nice, but I felt the reality of it was slim.
After having my transplant, one of the first things I learned is that as you recover you have to take small steps one at a time towards the goals you aim to achieve. It is the same with everything you do. I had to learn to eat properly again - from sucking on ice cubes, to eating soft food, to more solid plain food, to normal food; I had to learn to walk again, from learning how to move to the side of my bed, to getting out of a chair, to standing up, to taking a few wobbly steps, to walking down a corridor, then walking down steps, then a few hundred metres, then a kilometre and now miles. There doesn't seem to be an easy way, it is just patience, perserverence and then you get there over time.
It has been just the same with travelling. We went back to the Lake District seven weeks after my transplant, I was glad to do it, but had to lower my expectations of what I could manage. Luckily we were in our own home and I had to spend time in bed because I was still unwell and I was glad when I got back home to Hertfordshire and was nearer to Papworth, because I had had some serious symptoms to deal with. Nevertheless I was glad I'd tested myself and glad I'd been back to the Lakes, In those early days I was absolutely terrified of something going wrong with my transplant and then I might not ever see the Lakes again, so at least I had done that.
We didn't try going away again until three months after my transplant, when we stayed in a hotel for the night. We picked one that was only an hour away from home and did room service, as my eating wasn't quite normal and I still had to take nebulisers and heavy medication in the evening, but we had a lovely time and enjoyed the little break from routine. I soon got more confident and medication decreased and I was soon able to manage a couple of nights away and have meals in the dining room and not in the room. Then I got better and better and we visited the Lakes once more, this time I managed to walk a few miles and I could see when I looked back how all those small steps had become a massive leap.
We ventured into London, this time on the train and I managed everything really well, including lots more walking. As we left King's Cross to go come back home, I glanced over to St Pancreas and said to Rob, 'What is there to stop me hopping on a train to Paris?' It's only a few hours away, not even as far as the Lake District. The idea was now in my head, it was only February. When you have transplanted heart and lungs, you are advised that it will probably be at least a year before you can go abroad. At my next clinic visit I asked the consultant the very same question I'd asked Rob and she surprisingly said that as I have been doing really well and it was a sensible country and I was going to go on the train, it would be fine.
So the idea began to grow, but even though I'd been given the go ahead I still couldn't quite get my head around it properly. To be able to go abroad again when I thought I never would felt like another huge leap. In the end I waited a bit longer and decided not to rush it and wait until I felt sure. Then came the talk of more surgery I may need and I realised that perhaps I should try and grasp the moment while I could. It had already been confirmed after tests that I will need to have another operation, they are just deciding now whether it's at my local hospital or at a hospital with closer connections to Papworth. Next month I have to have the impudence test to see if I need the stomach fundo operation. So with all this in mind, we decided to book a trip to Paris for a few days, travelling on the Eurostar.
I deliberately kept the trip quiet, I think I thought if I didn't get excited then I wouldn't tempt fate and end up not being able to go. When the day came, I started having all those last minute anxieties and thinking about all the 'what ifs'. What if I get an infection? What if something goes wrong with my lungs or my heart? I felt determined to go though and although I had got myself anxious, we set off on the train to London.
There was something special for us about going to Paris. It had been the last place we'd visited only a few weeks before I found out I was ill. In some ways I felt it would be yet another milestone to move forward and away from the trauma of the last few years. To be able to go back abroad again and restart our travels overseas where we left off felt the right thing to do.
Our journey went smoothly and all to plan. My anxieties melted away once we were there and we had the most fabulous time. We had three nights there and nearly three days. We managed to retrace our steps one day and discover new places too. I realised I was walking for miles without even thinking about it. One of the days I had walked eight miles or so, I couldn't really believe it, I hadn't given it a second thought while I was doing it. It dawned on me then, just how far all those small and neverending little steps lead you.
I couldn't help but feel emotional at points and thought often of my donor, the wonderful lady who gave me this new chance of life, this new start and this opportunity to do something one more time. I stopped in the flower market and bought a little heart trinket to bring home to remind me of our first trip abroad since my transplant, my donor and what she has done for me. Words will never be enough to say.