11 January 2011
Dr Lort, my GP, kindly telephoned this afternoon to give me the results of the four recent blood tests that Clare, the district nurse, carried out. The PSA was practically zero, which is good news confirming that the prostate cancer has not returned or spread. Two of the other test were to do with bone which apparently were equally satisfactory. Just one test was slightly above normal, and inflammatory test, which Dr Lort will repeat in a couple of weeks to ensure there is no problem in that direction.
Also, this afternoon a very sweet nurse, called Lucy, came from Papworth Hospital with a new respiratory mask. She fitted it and it felt slightly more comfortable than the earlier version. She also adjusted the head harness which had not previously been specifically fitted for my funny shaped head and I believe that now there will be less air leaking into my eyes. Lucy was also very helpful over a number of other issues, for example, she explained that a lot of people on respirators can suffer from wind in their stomach which could explain the distension which has puzzled us for some time. As I have been taking peppermint oil pills and Mebeverine daily, with a view to reducing this flatulence, it seems that I can probably give up this additional medication with no ill effect.
Lucy also explained that stiffness and discomfort in bed was quite normal with MND patients. This is the first time anyone has suggested that this could be the cause of the pain or joint discomfort at night, which in some ways is comforting, particularly with the negative results from the blood tests. However, I still consider one consultation with an orthopaedic specialist will finally Â put my mind at rest on this issue. We did discuss the painkillers I am currently taking and Lucy said, of course, I could take something stronger although these would probably be codeine-based and a side-effect could be constipation, something I certainly want to avoid at all costs as it would involve more hoist work in the loo, which would be a great pity as we seem to have achieved a satisfactory rhythm in that area.
We finally discussed with Lucy the problems I’m having turning over in bed and she thought that the silk nightshirt might well be a solution. She explained that they have special sliding sheets at the hospital that they use to turn patients but she did not think we could put those on this bed as it could make it too slippery and I could actually fall out. So the hunt for a silk nightshirt proceeds.
I think I have finally cracked how to embed pictures into the diary text. (See entries for New Year’s Eve and 19th December). However, most of the pictures I get are from overseas and may run into 30 or 40 different views about a particular topic and are far too many to include in the body of the diary, so I still have to work out, with Charlie, how to put these into the Photo or Video Section and access them through a Click in the diary.
If you get chilly in your silk nightshirt then put something underneath it (thin smooth winter underwear is good)- couldn’t be simpler. You realize you are going to look very “fetching” on retiring to bed!!!
This is a test. 🙂
Can you see a picture of a teeny tiny dressage horse, when you go to this link? Poeme is a genius among equines. If she were a warmblood, she would be worth a lot of money. She’s a tricky little gal. Most riders are afraid of her.
She looks an absolute beauty. I cannot understand why anyone should be frightened of her
. Best wishes
Thanks Christine, for the tip about a nightware. I have no doubt I will sorted out in due course.
Please don’t worry, I WON’T send you photos; I was just testing one of those on-line photograph gallery that can be created for free. I was thinking you could, perhaps, create a gallery to make it easy to share photos with your readers. We would love to see some, and you did mention you had some to share!
There is already a Photo Section to the blog. In addition I recently embedded a photograph of myself in the diary as well as the photograph at the beginning. I’m sure readers do not want lots of photographs of me.
I must have a browser problem because I don’t find photos in the photo link or embedded in the text… I’m sorry for the bother.
Please look at Wendylett sheets from Romedic. These have been very useful for some of my MND clients with difficulties in turning. They consist of a fitted bottom sheet with a satin centre panel which is covered by a cotton oversheet lined with satin. They can be locked by tucking under thus reducing the risk of sliding too far.
ages so much for putting me on to the Wendylett sheets. They sound exactly what I’ve been looking for. I will certainly follow up the suggestion.
Just been reading you blog and totally agree with you re the leaflet for newly diagnosed patients. I have a plethora of information which would be extremely useful for people and tried to sort out a link/website for MNDA but they just incorporated some info into their site and it is lost in there. Would be pleased to collaborate with you
Thank you so much for your comment concerning information for newly diagnosed patients. I did raise this with the MND Association and was told this information was available but never got very much further with it. You could try yourself contacting the chief executive, Denise Knox, and see if you get any joy there. If not I suppose the best way we could collaborate is for you to compile a little brochure which I would then happily include, say, under the Anecdotes section of my blog.