Wednesday, 9 May 2012

A Soggy Spring Break in the Cotswolds April 2012

Cambridge Botanical Gardens
We finished at Addenbrooke's nice and early and after a dull, dismal week of continuous driving rain, the sun was shining, it felt warm and the sky was blue for what felt like the first time in an age. I'd had a bee in my bonnet about visiting Cambridge Botanical Gardens since our last visit to Cambridge in March with the girls. We decided to go and try and park up, get some lunch there and have a look at the gardens. It is a quite a long walk all around the garden and as we had been to hospital beforehand Rob had luckily put my wheelchair in the car. I can walk on the flat for fifteen minutes or so as long as I go very slowly, but in circumstances like this my illness inhibits me getting around properly to see everything, as I cannot walk that far and back again, so a wheelchair means I can do more, stay out longer and see everything there is to see, plus Rob gets some good exercise too!
Bluebells at last!

I was desperate to see some bluebells and I got my wish and more. The gardens were gorgeous, the birds were singing, the sky was blue and best of all some sunshine after all the dismal weather we had been having. This gave me a real lift and boost, after all the hospital visits over the last week and the never ending deluge of rain and grey skies, I had begun to feel rather fed up. Another place I wanted to visit while the apple blossom was out was the Orchard at Grantchester, so we headed there after we had finished at the Botanic Gardens and rounded our day off with an afternoon cream tea sitting in the Orchard. The blossom trees looked beautiful, the whole place is quintessentially very English. It feels good to try and turn around a morning hospital visit into a lovely day out.

Forget me nots at Batsford Arboretum

The day after this we went off to the Cotswolds, a surprise for my birthday, Rob had booked us in a lovely pub hotel for three days at Moreton In Marsh and then a night in Oxford to finish off the trip on the way back. I felt very well and had packed slowly over the weekend to avoid getting exhausted, so we set off quite refreshed after lunch when I had got over all the usual morning problems. The hotel room was lovely and although it had been raining all the way there and we passed lots of flooded fields, we managed an evening walk round the town's main street, which was nice and flat. We had a gorgeous meal and then retired to our room for the evening. Rob had put a lot of thought into what kind of room we needed, we need space to make up the drugs and a sofa to watch TV, both after dinner when I am tired and to relax in the morning while I take my time to come round and get over the side effects of the diuretic drugs. He always picks good quality accommodation because we need to spend longer than an average tourist in it.
Gorgeous wisteria

The day after didn't go as well, after getting up and going down for breakfast quite early - well nine or so, but that is early for me - I took a turn for the worse and felt really sick and unwell and my skin was flushing badly, I ended up back in bed for a few hours. We finally managed to get to Batsford Arboretum for some lunch and a look around. Again, the weather stayed fine, but it was dull and cold, but the plant life was beautiful and again the outing gave me a real lift after feeling so unwell, but it wasn't long before I felt pretty rough again and this time I had some chest pain, although I wasn't exerting myself in any way as Rob was wheeling me around the pathways in my wheelchair. We gave up and went back to our hotel room and I just went to bed for the afternoon to try and recover.

It is times like this when I feel that I've let myself down and let Rob down. He'd hoped for a nice day out, albeit with my restrictions and had had to spend it feeling stressed about me all the time and whether at all we should really even be away from home. As for me, well I have the feeling that I should be able to manage simple things and I simply cannot. I have had everything done for me today, meals have been made, I've been chauffeured about, I've been ferried around in my wheelchair, all I had to do was get up and get dressed and I feel so ill and am really struggling with everything and its worse because we are away from home. It feels as though my body just totally lets me down at times, when my head wants to be getting on with things.
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I come round again by teatime and I suggest to Rob that we could have a drive for half an hour to see some of the pretty villages that are roundabout, just to get out of the room and give him a break if anything. I assure him over and over that I feel a lot better. We managed a short walk around Broadway, the sun had even come out and Rob managed to take some photographs of the striking Cotswold stone buildings, many of them were swathed in late sunshine and wisteria was in full bloom everywhere.

We had a very quick dinner that night, I only really had a little of what I fancied, then we went back to the room to relax , read and watch TV. I went to sleep early in the hope of a better day tomorrow, however I was awake with more chest pain in the night. Chest pain can be a usual symptom of my PH, although I hadn't had it as bad as this for a while, I had had similar before and had had this checked, so although it was in the back of my mind that something might be going on around and in my heart, I reassured myself that I had had this before. I do know that if I had rung up my PH centre or gone to my GP I would be in a casualty department by now. I didn't want to put myself through that, but would if it became worse and I became worried then I wouldn't take any risk or hesitate to get to A & E.

As it was we were only an hour and a half away from home, we had deliberately picked the Cotswolds because of this and Rob was in two minds whether we should get ourselves home first thing in the morning. Morning came and I was feeling fairly good again, but it was torrential rain outside and we were still thinking of cutting our losses and going home.

Feeling a bit soggy at Hidcote Manor Gardens
Garden view
We decided to stay as I felt well again, but see how the day went and review later if we needed to. We had a lovely day at Hidcote Manor Gardens, a wonderful National Trust garden, which was nearby. We had lunch first sheltering from the rain, we got drenched just getting from the car park to the entrance, because I can't make a dash for it as everyone else does, but we soon dried off and got warm in the cafe and then luckily the rain stopped when we had finished lunch and we were able to get round the gardens. They weren't wheelchair friendly, but were fairly flat, so I managed to amble round. Everything looked colourful and the plants had an added beauty with the raindrops that had been left behind on them and the birdsong was in full chorus. It was a garden full of hidden treasures and we didn't know what we were going to find next.
Steps at Hidcote manor

Cottages at Lower Slaughter
When we got back, I was still feeling quite well, so we decided to stay on as planned, we were always safe in the knowledge that we could be packed and back home within less than two hours if we felt it necessary. We enjoyed a lovely dinner and the rest of our stay in Moreton in Marsh. The following day we went for a drive, heading towards Oxford, via several of the picturesque Cotswolds villages, stopping for a browse at The Slaughters, having coffee in Bourton on the Water and lunch in Burford. I had wanted to go on to Bibury and visit Arlington Row, before we went onto Oxford, but was tired out after lunch, so we went straight to Oxford. All in all, I felt a lot better and encouraged again that I can do and manage simple things and its not everyday that is bad all day.

We had a good time in Oxford too. After a sleep and rest we had a lovely dinner in the hotel's lively restaurant. The hotel was something in itself, it was a converted prison with a lot of history. The day after we spent a morning ambling at a snail's pace around Oxford. I decided to try and walk, as narrow city streets busy with people dashing around are not so wheelchair friendly. We managed a wander and visited a college or two. I had to stop and rest at times and by the time we made it to Christ Church College, I was flagging and knew I couldn't really go much further. I was hoping there would be a bench to sit on in the grounds so I could rest my legs again and get my breath, but no it is still in the sixteenth century when it comes to being disabled!

I found refuge in the cathedral, where I sat while Rob took some photographs. We were just sitting quietly together while I got my breath and rested when we were accosted by the cathedral guide, half an hour or so later and very well rested we managed to escape........... I just didn't have the heart to tell her we weren't cathedral fanatics, that we were interested in having a look, but mainly I was sitting because I couldn't even stand, let alone go and investigate one of her beloved stained glass windows.

We decided it was time to get back to the car and collect our things from the hotel and get home, but as usual my body wanted to play games and do something else as soon as we left the cathedral. While I had been resting the nausea had begun to set in and I was flushing badly and having tummy cramps. So off to the cathedral loos and just in time before an entire congregation of graduates and their parents descended on the two ladies toilets available, a minute later and I would have been in big trouble! I recalled the Windermere Ferry experience and thought I can't keep putting myself through this, it really was time to go home now.

We headed for the car nearby which we had left the night before as the hotel had messed up the car park booking. I was feeling pretty exhausted by now and just to make matters worse we could not find the parking bay, which Rob had noted when he parked. I was really struggling to carry on by this point and Rob was getting very anxious for me. Eventually, much to our relief we managed to find the bay and I think I literally fell into the car, I really did need to get myself home now!

All in all, I enjoyed getting away from it all and Rob and I have had some more memorable experiences together, which I will be storing for the time when things get even tougher. It has brought it home to me again, that I am unwell, but at the same time, I must not let that stop us from trying to have a good time. We just have to take the good days with the bad. It is lovely to be home again and it feels safe.

I love the colour of wisteria against the mellow Cotswold stone

We have decided it would be easier to stay in a holiday cottage next time if we are to stay over longer than one night. In a cottage, I could keep to our home routine more and this will make it easier, I wouldn't be tied to getting up for breakfast early or having to get ready and go out to dinner and there would be more facilities to make ourselves at home. We want to go to Norfolk again in early summer and we have decided we will try a holiday cottage next time. I accept now there will be days when we do this, that will not go so well, but I will always keep trying to live life to the full when I can. 

Oops no benches to sit and rest on!  

A Busy Week of Hospitals April 2012

A host of golden daffodils!
Easter and my birthday have come and gone and all building work finished on the house. We have managed to get back to the Lake District, but were delayed a few days as my sickness returned with a vengeance. Once it felt safe to travel, we did, but drug side effects took their toll again, while we were out and about. I can tell you, it is not funny being caught short in a forty minute queue for the Windemere Ferry, unfortunately this was the nearest place with a loo, when the terrible nausea started. Two ferries later and a lot of funny looks by waiting passengers, I got Rob to reverse out of the queue and get me to Hawkshead quickly, where there are more good public loos, but not in front of a bored audience looking for excitement while they sit in a ferry queue!
Newby Bridge, Nr Windermere

Forty minutes later, we decided to make a run for it and try and get back to the cottage. Safely back at the cottage and I still don't  feel that good. We start humming and aahhing about whether we should head home, I have had some bleeding with all of this too. My INR had tested high at my last warfarin clinic and a small alarm bell was going off in the back of my head. We decided to sleep on it and in the morning and after a good sleep everything was much better, no more sickness and more importantly no more bleeding. We had an easy day and didn't venture very far and only somewhere that has good toilet facilities! Planning a day out around toilets isn't unusual, I remember our little break in Norfolk recently and because of my diuretics, we went everywhere via Cromer as our first stop, where we had found a little car park with loos! The trouble with all of this is that it can make you anxious and lose confidence to go out. We had a few more restful and uneventful days and then returned home.

View from the Windermere Ferry
A week of hospital visits were looming, first stop a review at Papworth by the transplant team and then a series of visits to Addenbrookes for patch testing at the Dermatology Clinic to try and get to the bottom of the ongoing 'dressing allergy saga' as I was now calling it. In the middle of this I had another warfarin clinic to check my INR range.

The visit to the Transplant team went smoothly, weighing, measuring, blood tests, CT scan and then an update with a doctor. The CT scan was part of the team's routine check to get accurate measurements of my chest. The 'Domino Transplant' wasn't mentioned, so I asked about it again and whether it may have been discussed. The co- ordinator managed to check with the consultant, who informed us that it would not be a way forward for me. I was disappointed at this news, but at the end of the day, the thing I should be most concerned about is that I get a donor and that my own transplant goes well. I reasoned it was probably being a bit greedy to think I might get to save someone else's life in the process, but it would have been a remarkable thing.......I would have liked to do something remarkable amongst all of this if I could. The doctor also thoroughly checked my stomach, because of all the tummy upsets I was having and because I had gained a few pounds and she needed to check it wasn't fluid retention. She felt all was well, so that gave me some peace of mind.  

The following day, I had my INR checked and it was stable again and back in range, again more peace of mind  after recent events.

During this period, we had the sad news of two members of the PH community losing their battle to PH. One lady, I had never met, but I had spoken to her on the PHA forum during those first few months of my diagnosis and she had been helpful and encouraging towards me. The other lady, I had met through the Papworth PH Matters support group and she had sat with Rob and I and made us welcome on our first visit there. She was younger than me and seemed lively and bubbly and appeared quite well. I do not know the circumstances of her PH, but it was shocking to hear of her death and how sudden it had been. It really brought it home to me once more how this disease is relentless and cruel and can strike in different ways.

Life is fragile for everyone, but with PH it sometimes feels like you are walking round with a bomb, which can go off with a blast when it feels like it or it may go ever so slowly, fizzing and then stopping, fizzing and then stopping until one day it just stops. It can be very scary and in black moments I wonder if it will be a 'blast' or a 'fizz and then stop' when it gets me and I hope against all hope that it wont be either and my transplant will come and save the day. In the meantime life has to be enjoyed to its fullest and the only way forward is to think positive.

The series of visits to Addenbrooke's went very well, I was seen fairly promptly with not too much waiting around, which I had been dreading.  I was even seen ten minutes early on one visit. They found several things that I'm allergic to - some substances used in making perfume, nickel, a substance used in battery making and used as a preservative in various products and more importantly a substance used in rubber production, which may be contained in the adhesives in various dressings. They reassured me that there was no major reaction happening to any of them, which may put me in danger, they are just lower grade contact allergies.

The Viaduct at Arnside  
It still does not really sort out the problem of which dressings are safe to use on an ongoing basis to cover my Hickman Line puncture site, as I doubt that a whole breakdown of products used in making the dressings can be obtained. The doctor also agreed with my common sense view that it is not really a natural thing to have a dressing permanently stuck on your chest and that it is no surprise that the skin underneath may become sensitive, especially as I am sensitive to various products. I will just have to hope and pray that the dressing I am using now continues to behave itself until I can get my transplant.