Hi,
Please just walk with me through the past few days. As I have already said my daughter and her partner have just bought a new house and as parents we all want to help. Colin along with Joy, the mom of Chris decided to redecorate the lounge. This is no mean feat as it is a really large space. Stripping and relining was done by Chris and his mom, three walls were lined in readiness for painting and the front wall was to be a feature one. I wanted to help, of course I did and so began my week of ginger biscuit days. { read my blog That's the way the cookie crumbles}
I was the gofer, the one to collect things, pick up Izzy from school as my days were pretty good etc and I was pleased that I could help. Even stairs, and there are many at this house I managed, albeit with sometimes a push up from behind but also by using my arms on the hand rails to give the extra surge needed to climb them all. Adrenalin plays a big part sometimes in what I can manage to do. I was useful, I was needed, such a joy. I even managed to paste a few lengths of the lining paper for the front wall!!!
In-between helping I was seriously looking into the denervation that had been talked about by two of my specialist team. I at first dismissed this as it seemed to be too new, too novel and though I have trialled drugs many times and taken part in many studies this seemed a step too far. I never really discussed it at length with my family and friends, it was too "off the wall" to take seriously, though I knew my meds were no longer working efficiently for me. So it was that the first time I really discussed it properly was with my good friend Rhonda whilst I was on holiday in Spain. The day was lovely, sitting under the naya and discussing anything and everything that popped into our heads, such a lovely friend it was so easy to move onto this subject. I told her of my fears, the research I had done, the hopeful benefits versus the negatives, it all came out in a rush. Rhonda listened and then said "well you are strong, you can do this and if the meds are not working efficiently what do you have to lose" Of course she was right and so I returned to the UK with a resolve to take this suggestion by my doctors further but still not totally convinced.
Barbara Cherry was really good in giving me feed back to my questions. Being the first to have this operation she obviously is a font on knowledge on the subject and then when later I saw a Facebook message from my friend Jo Smith saying she was going ahead that was it, mind made up, well almost. After all I was doing OK, I had gone into my ginger biscuit days, the wafer ones were gone it seemed.
Sadly the ginger biscuit days came to an end and I struggled more and more to even stay in the room with Colin as he decorated, I kept having to go and sit down. The act of climbing the stairs became so hard, it was as if I was making my way to base camp at Everest. Each step was incredibly difficult to climb as my oxygen starved body found it difficult to send the much needed oxygen rich blood to my legs. They felt soooo heavy, and I actually had to help to lift each leg with my arms up each step when I decided I needed to go home. Still I did have that last crumb, that little bit of deliciousness left after the biscuit had been dunked and eaten too many times. I feel I had made a difference, albeit a small one.
On returning home I decided I wanted a lovely warm bath, just to soak and relax. Not a bad idea but in truth the effort it took was huge. The bath water was drawn, pyjamas and dressing gown at the ready and then it hit me, How could I get in, the bath sides looked huge and my legs were not co-operating. After a few attempts, and making sure I had unlocked the door in case I needed to shout for help {not something I would have been happy to do though as my body is not that of a 17 year old any more) I settled down to enjoy a soak. I relaxed and enjoyed the feeling of warmth and the lovely scent of the bath oil used, stupid me!!!!! After giving my face and body a lovely exfoliating scrub I decided to get out. Oh no, the oil had obviously made the bath slippy and the sides that had seem huge to climb into had grown even higher I am sure. How could my legs get over the side of Ben Nevis!!!! I tried and tried even to stand up, draining the water "just in case". I tried to get on my knees first, no could do, tried to stand up by pulling myself up with the handles, no joy with that one either. Just as I thought I would be in the bath for at least an hour until Colin arrived home one last huge effort had me standing up!!!!! Yeah, but then it hit me, I still had to climb over the bath sides. If Ben Nevis seemed hard then Kilimanjaro was a thousand fold. I had already left the towel and dressing gown etc on the floor of the bath so decided that if I fell at least my landing would be a soft one. It took time and effort but I managed to get out. I laid on the bed to dress myself, no energy to stand, I was done.
Colin arrived home and made our evening meal, he is getting to be pretty good at cooking and his knife skills are now amazing when chopping. Jamie Oliver had a hand in this with his lessons! Meal eaten and we watched a little tv and then I decided it was time for my bed. I just could NOT get myself out of the chair. Colin pulled me up and helped me to bed and there I lay but it was then that I decided for definite that IF my screening goes well I want to go forward with this denervation. I need to give it a chance, I need to push back some of the pressures in my lungs, to help them to help my heart.
Then came the call from my research specialist who asked me if I had read all the paperwork I had had sent and did I want to go ahead. Without reservation, though some trepidation my reply was a resounding YES so I have been told that in the next couple of weeks all arrangements will be made for my screening, hotel booked and she was going to talk to Alex, who will be carrying out the procedure, of his availability. My daughter is a little upset, she wants me to wait until more have been done but I feel I cant wait, this is my time. Maybe the actual procedure will not take place until after Christmas, I really do not know but I do know it can't come soon enough for me.
Jo Smith had the op a couple of days ago and though there were a few issues she is now home and told me it will be fine, Barbara is still on hand for me to ask any questions and now I just await the date. I believe I will be the 8th person worldwide to have this procedure. Jo tells me there will be many people in the room but as I say I always did like an audience, flash back to my Thespian days.
Of course I will be nervous but there is nothing wrong with a few nerves. When I used to parachute I was always told that if I did not have nerves before jumping I should not be doing it. We need the nerves and the adrenalin, our bodies need it to cope wth what lies ahead. I was always nervous before a jump wondering if I would be quick enough if my chute malfunctioned, roman candled, to cut away that chute before employing my reserve. If I did not have the presence of mind then the two would tangle, it is right to be nervous. right to have nerves before going on stage at a theatre, will you remember your lines, will you deliver them correctly. right to be nervous when stage managing productions, BUT once the show begins or the jump is under way the nerves dispel and all thoughts are on the process unfolding. So it will be for me IF I meet all the criteria for this procedure, and there is still a chance that I will not, the criteria is very high and the screening very thorough. We shall see.
Elle
Christmas is coming, lots of you have children, grandchildren, brothers and sisters. Please please read this story. Sorry about all the rubbish posted on the right but concentrate on Elle. Aged 10 she is dying, she needs a transplant. She thanks her team for the care they have done for her but her time is running out. I pray NONE of you are in a position to have to sign the forms donating the organs of a loved one BUT please, please if you have not done so then sign the register for donation on your own behalf. She could be your child, you would be hoping that somebody would have the generosity of spirit to have signed the register and that you would get your wish, an organ that can save your child instead of it being thrown away, destroyed. If you have not signed the way to do it is easy, go online to organ donation and there is a form, sign it and become part of the organisation that SAVES peoples lives. A few minutes is all it will take you, please please, I am not scared of begging when it comes to such a huge thing, to save a life. There can't be a bigger gift.
Rich tea day
A new day has begun, a rich tea day I think. I know I am capable of getting up and dressed as that is done. Now all I am doing is getting this blog out and attending the funeral of a friend of mine who sadly died last week. I shall then rest and hope tomorrow is a ginger biscuit day as we are having Izzy and I would love to be able to do something with her, even in a small way as spending time with her is so precious.
So I love you and leave you all with once again a huge thank you for reading my blog, for the likes and the shares that mean so much to me. the comments are read and re read I can assure you too.
Warm love
Carole xxx
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