I just had a call from Dean, my designated driver when I am on a study or research. He takes and fetches me back from all appointments. He just told me is is collecting me to take me to Hallamshire next Wednesday. I had no idea, nobody told me so it is a good idea we can clear the diary. I asked Dean when I was coming home as they wanted me for a couple of days but he has no idea. Shame I have to ring him, or in this case my taxi driver to find out what is happening. I just rang my research co-ordinator to see if she can give me a heads up on this but she is away today. Nobody else knows what is happening, they have my name in the diary with a question mark opposite. Just seems a bit weird that nobody bothers to tell me and that appointments have been made and taxi booked without my having any knowledge.
I received a call last week from another department at my local hospital asking me to go in on the Thursday but all was explained, I knew just what was happening but strange one this time. Anyway I am told she will ring me tomorrow first thing. I hope she does. I love all my team at the Hallamshire it just made me wince a little that my taxi driver knows more about my appointments than I do!
Fortunately Colin has nothing on other than a Thursday walk which will still go ahead weather permitting so my not being here IF they need me to stay will not be affected. It is a super walk going around a reservoir in a beautiful part of the country so hoping for good weather. Colin has now got his new lenses for the camera so no doubt will be talking lenses to a friend of ours from the group Martin who used to be a professional photographer, happy days for them both. Colin is never happier than talking cameras or shots so he won't miss me next Thursday IF I have to stay in.
Update on this. My research co-ordinator was furious when she heard that I had been contacted by my taxi driver. Apparently she needed to get all into place BEFORE she rang me, Dean just jumped the gun. This is because he has to rearrange some of his lifts to accommodate me so I totally understood why he rang. The upshot is that I am to begin my study on Wednesday. They have booked me a room at the Rutland hotel opposite the hospital for one maybe two nights depending on how I take to the infusion. I have been infused with iron before but this may contain something a little different, I just don't know so lots of tests ahead again, MRI RHC etc so we shall see if or how much I have deteriorated.
The reason why I will not be staying in the hospital is that the studies and researches done in this hospital are paid for by the pharmaceutical companies and NOT the NHS so we do not use up the NHS money on any of these, taxis, hotels etc. This is very fair as the NHS is overloaded as it is.
I now have a study buddy too as Mandy Leonard will be beginning to trial in April. She is going in for her induction this week and infusion in April. Never sure whether it is good or bad to have somebody to compare notes with but for me after the horrific time with my last trial drug I am looking forward to being able to talk to each other. We neither of us will know if we are on the real stuff or the placebo but it will still be interesting to compare notes.
Laura Parker is sill on ward M2 so I shall get to the hotel first, check in my bag (if the room is ready they say I can use it even though very early) over to the hospital for some breakfast as a long day ahead. I shall then get to talk to Laura and send her all your well wishes. It is always nice thinking your ph family have got your backs.
Talk about a cock up.
We had talked about going away for the weekend prior to Colin taking Izzy away in the motor home during part of the Easter holiday. When I told my friend we were having trouble booking in anywhere suitable she offered their apartment in Grange over Sands. We were so pleased then to be headed off to this part of the country, one I have never explored despite my love of the lakes and all the time spent up there. On arrival we were greeted by a lovely guy who lives in one of the apartments. He told us that one of our friends sons was in the apartment with his girlfriend! We rang our friend who was shocked that we were up there at that time as they assumed that we needed it for the Easter weekend. Just a mistake by all of us really. Anyway we decided we were not going home we would find somewhere else to stay. We talked to three local ladies, one who knew the hotels around and about and we rang them all, none were available. There were some Bed and Breakfasts but Colin hates these. So with no accommodation in this place we headed on to a place called Ulverstone where we found a lovely hotel right on the side of the beach. Fishermen were waving their rods around and walkers were in the hotel having coffee or a drink.
Fortunately they had a room spare for us and so we were sorted. Evening meal was really nice, everything home made and food cooked to perfection. Only down side was the butter, it was so awful, I mean really awful. We left it once we realised that it was the butter that made our so gorgeous rolls taste bad. After quite a bad night for me, breathing very laboured and no air in the room Colin went out to take pictures of the sun coming up. Unfortunately the clouds did not allow him the view he needed so he was quite disappointed on his return. Off we went down to breakfast and what an amazing menu and spread. All the jams and preserves were home made, all really lovely except for the lemon curd, we could taste the horrible butter that had gone into making it. I must have had the most generous piece of smoked haddock ever given in a hotel it was large and beautifully cooked with my poached egg on top. Colin had kippers which were fresh, not the packaged variety. This is certainly a place to return to when hopefully I feel better and able to enjoy the vista and walking all around me..
What a to (hair) do.
I really went for it at my hairdressers. She put me three colours in my hair , none of then drastic so not too noticeable but in nevertheless. When it came to the cutting we decided drastic action was needed so I said she could go quite mad getting rid of all the curls I now have, though I know they will just grow back again It was rather scary seeing quite how much was cut off. We then talked about adding a conditioner that leaves hair soft and shiny for weeks. At this stage I didn't care about the cost or anything I just said to go ahead. When it came to the blow dry I said I needed something different and different I got with my hair all flicked out front and back. How I HATED it, I could not wait to get home to get rid of it. Colin however really liked it and said it was nice to see me with something different. The following morning I was straight in the shower and washing my hair to rid it of said flicks. Colin looked at me in amazement when I finished drying my hair and exclaimed it was now no different than before. Well it is for me, it has much less curl, it is much less weighted down and much easier to manage. I for one am happy, I fear Colin never will be as no matter what I always revert back to the hairstyle I know, albeit sometimes a little shorter.
Gem Cousins
Gem wrote a couple of weeks back that her engagement was over. The strain of what lay ahead proved too much and sadly the wedding was not to be. For sure it is hard for anybody who has a partner with ph. The future is unknown and life as it was is curbed for various reasons. People outside looking in see a person who appears to be just the same, they have no idea of the struggle going on every minute in our lives. The ones closest to us however do have an inkling. They know of the pain we suffer, of the engagements we cannot keep, of the days spent in bed, hospital visits constant blood tests to try to catch the damage caused to our bodies by the very drugs we take for our condition. These drugs are very toxic and they themselves can damage our bodies so badly. It is easy then to see how relationships can end, how the strain can just get too much.
Gem is a survivor, she has taken her broken engagement on the chin and is setting off for three months in Australia! Oh well done Gem, just the thought of such a long flight stuck with the oxygen would be too much for me. I hope the visit is all that you want it to be and that you return to your homeland feeling fit as you can be and with strong hopes for a future. Oh and well done for the size 8 skinny shorts, how I wish I could post that about myself on here!!!!
I must begin my day. I have ceramics this afternoon and also a board meeting to try to get back for. We are having Izzy again overnight. She will arrive bathed and ready for bed and have a short playtime with grandad before I do the reading and story business with her. Up tomorrow for breakfast again with grandad and then school . I will try to get all sorted for my early start on Wednesday morning. I just hope this study gives me back some of my energy that has sadly left me right now.
I bought her a new "old fashioned" swimming costume, she loves it. She said she wants to wear it every day!!!!
Spring is in the air, I wish you all an amazing Easter, don't eat too many eggs! I don't know about your kids but ours get too much chocolate at this time. As we are always very careful about not letting Izzy have much sugar we don't give an egg, we give each of the grandchildren £10 to spend as they wish. Once all the eggs are eaten I hope they find something of more value to spend their money on, oh I am a cruel grandma!!!!!
Much love to you all and I hope your health improves. One day we will take a tablet and all will be well with us I know.
Carole xxxx
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