A few days ago we spent a delightful couple of hours with Mary and Jules from our PHA UK Association. The object was to film seven people and their journey to get diagnosed. When finished this will be used as a teaching tool and for many things ph related. I believe many of us had a struggle living with this disease and not being listened to by our general practitioners. I sincerely hope it helps in some way as I know for myself had I been diagnosed sooner my outcome would have been better. I know I am fortunate that my A Team got on the ball and rescued me just in time but my concern is for those people still not being listened to. I do wonder how many are suffering but not being diagnosed.
The filming went very well and though a little nervous at the beginning I quickly was put at ease and we had a super time. I have been filmed for ph before so really I should not have had any concerns but there it is, I do occasionally get stressed about even small things, Mary and Jules were kind enough to send us some photos that they took of us in our garden. Sorry about the state of my hair but it does seem to have a mind of its own and it was a little windy in our garden.
Catch up with PH family
October 21st should be a fun time as our PH group at Sheffield is having a lunch for up to 100 ph patients and one carer each. This is at no cost to us and I am so looking forward to this as we all miss our conferences we used to have before the dreaded covid. I don’t believe all the tickets have been taken yet so should any ph patient that attend Hallamshire wish to attend please get in touch with Shaun at the PHUK organisation who will be able to issue tickets. Having been a patient there for many years I do know there are plenty of hotels around and about should anyone wish to attend the lunch and wish to stay overnight. Not sure of the range of prices but well worth a look to extend your time in Sheffield. This gathering and lunch will be a super way to reconnect with patients or make new acquaintances. I believe each specialist hospital will be having their own this year so keep a look out for any info that comes your way.
Gardening.
We are at the stage of harvesting our crops. Small though they are it is very rewarding picking our own things. Haul yesterday was another pile of onions, strawberries for breakfast, potatoes, some for the next two meals but some already in potato sack whilst still loads to be harvested. Tomatoes are ready for picking now. Yesterday we picked a pile of plums from our tree and I made plum jam. This was very satisfying indeed. In the morning we had collected blackberries and though we had already picked 2 1/2 pounds from the hedge opposite us we decided to go to our special blackberry picking spot in Copley in our way home from shopping, In 15 minutes we had picked 3 1/2 pounds easily between us, we had enough for our needs so left for others to collect. Once home and plums jam made I then moved on to make Colin his favourite topping for his yogurt. This is a very easy blackberry syrup. Way too sweet for me but I was happy with the result. A beautifully clear syrup. So easy to do and now in four jars ready to see him through most of the year. He only has a little at a time. The spare blackberries will do well in the freezer and are going to be used as a blackberry and apple sponge to have with custard over the Christmas period when we have family over. That is the end of my black picking for this year. Now I just need cooking apples to pick and stew to freeze . I don’t grow these just eating apples and this year they have not done well at all with most of them dropping off the tree whilst still small. I think it is the weather but who knows, our blueberries were poor this year too. Our herbs have done well and the rabbit next door benefits twice a week by eating a little of these. She squeals with pleasure when she smells them.
General News
My ph still appears to be stable though my breathing is not the best. We are trying to get to the bottom of this and many tests are being done or have been done so hoping for news soon. I do have a tilt test and barium meal thingy coming up which is sadly on the day of a dear friends funeral, Richard was a great boon when I began at my local Thespian group and taught me so very much and we had such a laugh too. We are hoping I can get my testing done asap and get to the wake in time to see his partner and lots of other good friends too, I am hoping it goes well at my appointment with no hitches. I don’t want to postpone it as we need to get to the bottom of my issues so we will try to do both.
I am waiting for the full breathing test appointment which again will be at Sheffield and also to be seen about a silly thing on my face. It is just to rule out cancer which I don’t believe it is but my doctor wants to have me seen quickly so Tuesday it is for this one, On the same day I also have an appointment to check my white cell count which is extraordinary low. I do take immunosuppressants which do lower them a great deal but mine is way too low so they test us for all kinds of things, leukaemia being one but again I am confident I don’t have this. Anyway tests being done on Tuesday and then another two weeks later so should be closer to finding out what is going on. My specialist is being very thorough and I am also being checked out for diabetes and my thyroid. I am waiting for an appointment to see a chiropodist due to getting way too many blisters on my feet despite my walking boots being made specifically for me, my specialist is concerned the blisters may lead to sepsis. What a struggle as I try to keep fit by walking yet this may lead to serious consequences to my health, It never ends but I am blessed with the care I receive and leave any worries on their shoulders.
Football
I have been loving watching the Lionesses playing football this year. Today they play Spain in the final so the result will be over by the time you read this but it will be a great March to watch. Colin is out on his bike this morning as I write this but will be back to watch with me as he too has been very interested. One thing that does disappoint me though is to see once again fouls being carried out. I was hoping that as it was women playing they would be more bothered about the game than fouling to try to win but there it is. Let’s hope it does not go the way of the men’s football that to me got too physical it put me off watching, OK I suppose I should accept it is the way it goes but for me I would prefer not to see people being deliberately stood on, pushed or hurt in any way.
Add on. Awwww we lost. Gutted but must admit Spain played a great game though still too many fouls, Well done Spain.
My daughter and husband and two grandchildren are still away on their holiday in Spain. We have missed having them next door but the holiday appears to be going well. Colin has enjoyed looking after the cats as he gets lots of cuddles in. As it is next door it is doable. Nice and easy, just a quick walk through the gardens and into the house. It works. We wouldn’t be doing it if we still lived where we lived before we built next door to them so another plus on our move.
Another add on. As we were watching football we looked up to see a smiling Izzy. She had just arrived home from holiday a day earlier than I had thought but at their scheduled time. We said she had not been home, just came straight round which was nice. I did. not get to see our Harry who was dropped off at his moms house on the way home. Hopefully I shall see him soon.
It is almost time for the children to begin another year at school. We can’t believe Izzy will be starting year 2. From the shy scared little girl she is now confident. She catches busses too and from school and catches busses to meet her friends in town for lunch etc at weekends, Scary to see how quickly she has grown but very necessary for her to be independent as she grows and develops. We have an app on our phones so we can see where she is when we need to.
Right now she is very much into history and requested for her birthday pictures of all Henry V111 wives and also Queen Elizabeth as she was his daughter. Not sure why she has not requested one of Mary his eldest child who though declared illegitimate as a way for him to divorce Catherine of Aragon went on to become Queen Regent. I must ask her on her return. Anyway all pics are now delivered and just been returned from the framers ready for her turning 13 in September, yes a teenager, now the fun begins…………..
Well I must now get on and maybe prep our evening meal, sea bass, our own potatoes, lots of veggies etc. nice and simple. Colin cooks the sea bass and honestly he does such a great job they would approve on master chef. Beautiful crisp skin and lovely and flaky flesh, not dry not raw, but perfect, with brown butter and capers drizzled over it is a delight. He will finish with yogurt and his gorgeous blackberry sauce I made him yesterday, I may make a jelly for me. Sort of gone off sweet things.
I hope you all go well with whatever you are up to right now. Thank you for taking time out to read this.
I send warm love to each and every one of you.
Carole xxx
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