We are halfway through our holiday around Cornwall and Devon in our motor home. We were blessed with amazing weather for the first week but as I am typing this it is a wet and miserable day outside, though I am toasty and warm in my very comfortable bed. We are just planning where to go today as we will be leaving our family who live here in Poole to begin our slow, steady way home, stopping when and where we please.
Our first stop on this journey was in Bristol where we went onboard the amazing SS Great Britain for a look around. This was the first ship of its kind to have a metal hull. What an experience this was. We were taken on a journey back through time and saw how the people travelling on this ship heading for a new life in Australia had to cope. It shocked me how even the wealthy lived in such tiny cabins, not much bigger than the poor ones. The life on board though was then very different in that the food was so poor for the ones in steerage and quite good for the higher echelons of society, it shocked me to see how many live animals were on board at the beginning of the journey, though those in steerage saw none of this meat
If babies were born on board and died they were just thrown overboard. The rich could go on the top deck to take the air but the steerage were not allowed this privilege. There was also a room set aside on this ship for just the ladies too!
One day the crew were shocked to wake and find the captain had committed suicide. He had locked himself in his cabin, moved the lamp that hung near the porthole, also removed the screws to said porthole and let himself drop into the water below! So many stories to be read aboard this ship. If anyone is interested I am sure you can google it. We loved this experience immensely.
Well we didn't expect that!
Whilst we were heading to Salisbury on our motorhome journey the phone rang. I saw it was an unknown number and expected it to be from Health Care @ Home so was surprised to hear it was my trial co-ordinator. She had been asked by my specialist David Kiely if I could go the the hospital immediately for a right heart catheter as he wanted to bring my trial date forward by a month. I was shocked but pleased to be told it would be earlier than the expected date but there was no way I could get back as we were too far away. Anyway the upshot is that I am now going in on Tuesday for a couple of days for all the tests needed to be done before I begin the trial medicine to take place. When I asked today why they have brought it forward I was told the date for the trial is closing. So I shall head off in my taxi and hope that when I return home it is with a bottle of the trial tablets. Then, of course, I hope it helps with my condition.
I heard we lost another two patients to this terrible disease. One is called Sarah who I don't know but one is Kim Pierce, a really lovely lady who helped others with ph often. This is why I trial. I am fortunate to still be here five years after diagnosis but I am aware that the disease is progressive. Some do well with the medicines to stave off clinical worsening but others do not fare so well and lose their fight for life. Others still live a life but with oxygen and wheelchairs being part of every day life. All any of us want is the life we should have had if we had not been stricken with this disease. If I can be part of helping to get the cure for us by trialling then it is worth all the hassle that comes with it.
Old Sarum
Also we stopped to look at the ruins of Old Sarum, a castle built by William the Conqueror. King John lived here and indeed Henry 1 and Henry 11 all used the castle at periods in time. Sadly it was allowed to fall into disrepair and stones were taken and used to build other fortresses and homes over time, still there is quite a lot to see and we could get a flavour of the size of the place and in such beautiful surroundings. I can't be alone in touching the stones and wondering who placed this one here, where did he live, what was his home life like and so forth. When looking at ruins I always think of the people that built the castles, not the people that lived in them, that is reserved for when I look around castles that still stand and are furnished.
When I look around castles such as Warwick Castle I see a different picture. I see the wealthy family living within these walls and the lives they led, so different to the servants that cared for them. The furnishings are often lavish and the paintings alone would have cost a pretty penny. On looking around these places I also like to look into the kitchen and the laundry rooms. So much we take for granted these days and I must admit I am so pleased we do have all mod cons. Just looking at the apparatus used for the crimping and the ironing of the tiny pleats so often found on ladies blouses makes me so relieved I live in modern times. Though I do starch my linens the job is nothing like as arduous as the servants had it then. I do like to see a little history on holiday. We are so fortunate that in Great Britain we have so many wonderful places preserved for us to enjoy. We are both members of the National Trust who do such a wonderful job in restoring and taking care of these amazing places for us, as indeed do English Heritage and all the other associations we have to help us keep these places going for all to enjoy.
Oh but the SMELL!
When we are away we try to catch buses where we can, it's so nice to travel on all the country roads without giving a thought as to where we will park in the towns. On visiting Salisbury we did the same and enjoyed our walk around the town. On going back to our motor home though it was not the enjoyable experience we had when going into the town.
A man got on the bus and sat opposite us. It was apparent immediately that he was very scruffy, maybe he was homeless, who knows but the stench emanating from him was sooo horrific. It actually made us both gag and we had no escape, the rest of the bus was full. I know there was nothing maybe he could do if he was homeless. Where do they wash their clothes or have baths. I haven't really given it much thought but it must have been dreadful for him too, or maybe he couldn't smell himself. Now I am fortunate to live in a decent place with enough money to stay clean as indeed most of us do. It did make me reflect on what happens to these people who are homeless. Is it through choice, through drinking or being on drugs. I can't know the answer to why this man was as bad as he was and though he made me gag I must confess I also felt sorry for him. Life on the streets must be very hard, it's not something I would wish to do so I try to be tolerant of these people. Who knows, maybe it could have been me had I be born into different circumstances. It's a sad world.
Exercise and ph.
All of us read all the time in the papers how absolutely essential it is for us all to exercise more, now I know it's not so easy for us with ph, we can't just jump on a bike and ride up hill and down dales, unless we have mild ph. For some of us it is exercise enough just to get dressed or washed each day. However we do know the importance of exercising if we possibly can. Even ten minutes a day is better than none. I know I get encouraged by our own David Stott, a ph patient who regularly runs and indeed, he smashes the six minute walk test! We saw how on the death of Hazel Roberts last year he wrote her name on his vest whilst running to raise money and awareness for ph. I have a ph friend in America called Katty Perazza who runs at least four miles daily, despite having suffered no less than three heart attacks before she was discovered to have ipah. She was determined not to let ph rule her and indeed it seems she is doing a good job of being the boss in her fight for a stable life whilst living with this cruel disease. Both of these ph friends inspired me to take up walking eighteen months ago, despite being scared of maybe making my heart worse. I managed a year of doing really well before a deterioration in my condition forced me to curb my activities. Maybe, just maybe the trial might bring me back to the health I need to succeed in walking again.
Right enough of my ramblings, I will get this latest blog out and hope I haven't bored you all.
Keep well and will speak later once my trial has begun.
Carole
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