Oh how I wish we had come to the day we did not ever have to write such things as this in our blogs or on our Facebook pages. Sadly we are not at that point so it was that yesterday I posted on my Facebook page the very sad news that we had lost Laura to PH.
This news leaves us here in the UK reeling as it seems only yesterday we also lost another very popular, very well known ph fighter, Karen Farminer. To any new ones reading this blog you will never get to "virtually" meet either of these two amazing people but I can tell you now how very badly they are missed.
Laura was so lovely, so bright, so full of fun. I only met her through the dreaded ph but still it was always a pleasure to meet up with her when I went for my hospital visits. She spent a lot of time as a resident of M2 Royal Hallamshire which was my specialist hospital. She talked about her husband Stephen and her son Jack. Her pain on having ph was obvious and her worries were for her husband Stephen and her beloved son Jack, aged 7. She told me that Stephen was a great dad so she knew when she had to leave this earth he would be fine with his dad but as a mom she wanted to be with him in every step of his young life. She wrote him birthday cards, christmas cards, cards for when/ if he got married, had a baby etc. Such was her need for him to never forget her, that she would always be a part of his life.
I do not believe Jack could ever forget his mom. He is surrounded by people who loved Laura deeply, people who will alway be telling him about his mom, showing pictures of the happy times they all shared with Laura. His dad, whom I had the pleasure of meeting will be reminding him of his mom as he grows out of childhood and into adulthood. I also know that Stephen is very capable of taking care of Jack. He has needed to do this for many many months as the toll the ph took on Laura's health grew and grew. It was Stephen who did the school runs with Jack, who made sure he did his homework (although I know Laura as a school teacher worried about if he was made to do enough!)!, it was Stephen who carried on the daily life of living whilst he carried the unbearable pain of knowing he would shortly be losing his lovely wife. How my heart goes out to all of her family right now, to her parents who were with her when the decision was made for her to go home to die, to Stephen for the ache he will now be feeling, the pain of losing his life partner and to Jack who now has to live a life without a much loved mom.
Death when living with ph is with us at all times, we know ph is progressive, we know without the medications most of us would not even be here right now. What we also know is that on these sites are people who have lived many many years with ph and are still phighting today. We also know we need to remain strong, even when reeling under the blow of losing Laura, we need to keep believing that daily the cure comes ever near. We must never lose sight of that. Sadly the cure was not to be in Laura's lifetime, her body just had too many complications to fight it all but believe me it will come, just keep believing.
Laura you are not forgotten, you live on in the memories of the many people that loved you, just look at the pictures posted on your timeline, you see all the pain at your passing you see all the pictures of the happy life you had as a very popular girl, a real party animal until the ph took over. You live on in so many peoples memories.
and away they go ..........
Colin is taking Izzy away for a few days in the motor home, how excited is she. I am not allowed to go she tells me, this is just her and grandads time together! The van is here, food is ready to be loaded and plenty of toys "just in case" the weather is not being kind to them. Plenty wet weather gear is going to be loaded along with her bike and scooter. I shall of course keep in touch daily with them but I know they will have a great time together. They are only going to be just over an hour away from home in case Colin is needed here with me. Fortunately I have family and friends close by I can call on should the need arise but I am hoping that need does not occur and that they have a truly super time together. They are heading off to York.
York is an amazing city with so much history all around and so much more to be discovered over time as underground there are still excavations going on. As we try to teach Izzy history where and when we can we know she loves this place, walking down the shambles, learning about why the houses were so close to each other, hearing about the lack of sewers etc. We have ruled out her going into the York Minster as I believe she is too small to take in the magnificence of the place, anyway as I have said before the cost of this place being built in the times when money was so tight for the poor still gets to me.
The site of the park they are staying on is truly superb. People book for many months ahead to ensure themselves of a place here. It is right on the side of the river and nestling side by side with a magnificent park to ride her bike on they could not be going to a better place.
Up and down
Since being infused with the ferinject a week ago I have not been too well. I truly do not believe it to be the infusion as I have been infused before with this, though not on a study, and I did fine. The first couple of days I was fine then I spent three days in bed unable to even get a bath. Now I find my mornings are ok, I get out and about and do what is needed to be done. By midday I begin to go off as I call it. My legs begin to buckle and I feel myself going faint so tend to spend my time sitting in a chair with my feet up. I am so afraid of fainting as this could mean an end to my cruise, the insurance company would surely take a dim view of my leaving the country with the fear of this happening in foreign climes. Colin was going to cancel his trip with Izzy but I have assured him that all will be well. With ready meals in the fridge and nothing to worry about he can go about his small holiday knowing I am not going to be headed too far away.
I hope not!
I was playing online scrabble the other day Izzy came over to see what I was doing and said it looked very interesting. I told her that when she could read a little better she too could play it.She looked at me matter of factly and said "yes but you will be dead", when I looked at her quizzically she also quickly said that probably her mommy would be too. Just how old does she think it will be before she can read anything and everything. She is doing very well now, the teachers are very pleased with her progress. I think I shall buy a scrabble game board for children. I am determined to play this game with my grandchild before I die!!!!!
My daughter Danielle has a collapsed drain at her house. This means all the drive being dug up, excavating down to the problem to a depth of one and a half metres, quite a big task. The insurance company have been informed but as is usual the claim just gets more and more complex. They wanted a dvd of the collapsed drain, easily done with the cameras they have nowadays and they wanted to know depth of said drain etc. Now all this is done they want a full breakdown of costs so whilst all this is going on it is not good to be in her house using the drain. She is very fortunate that she can spend time over at her boyfriends house. I wish that the insurance company would be quicker with the go ahead for the said works to be carried out, surely it is a question of health and safety, not good to have broken drains.
We are very fortunate that we have a nice man Chris in the life of Danielle, he takes over with all the things that Colin used to do. This was getting to be quite a strain on Colin. He not only has me to take care of and of course we are fortunate enough to look after Izzy too but as Danielle was a single parent and a very hard working one at that it seemed to be down to Colin to sort out anything else going wrong in their lives. Chris seems to be a very able guy and he has taken on the mantle of dealing with these things. I believe Danielle will be helping him out too such as in the decorating of his new home. This relationship seems to be working well and I pray that it lasts. It has certainly taken away a lot of the stress on Colin and so consequently me.
Gem Cousins and the problems of travelling with ph.
I opened my Facebook page today and had to smile, sorry Gem. The picture is of Gem who is headed off to Australia for three months. It shows the amount of medication needed for such a length of time. I only ever had two months supply at any one time when travelling as I never went away as long as Gem is doing. I wanted to post this just to show anyone reading this blog who does not have ph just how much suff we go through over a three month period, quite bazar to see it all together like this, bet the airline looked rather shocked!
I remember when I was on infused iloprost and all the stuff needed, thank goodness Gem is not on this or she would almost need a whole airline to herself to get all the tackle in the hold. I know we were told we needed to take all my vials of iloprost into the cabin with us as it would be too cold in the hold. We had many many boxes of the stuff! The stewardesses were very obliging as they found places for all these along with gloves, lines and sterilising equipment etc as I needed to change my pump en route. It made for a lot of wandering up and down the aisles as people were nosing and them telling their friends that something weird was happening!
Have a truly great time Gem, what an amazing holiday, I am so looking forward to seeing how you are getting on with this adventure.
Right, time to go, breakfast to be had and then to make sure all the food in the freezer is transferred to the motor home. We have a very excited like girl bouncing up and down right now!
Go well everyone, I send each and every one of you warm love