On Sunday I headed off to the #bsh2019 conference in Glasgow. It was fantastic to be in the company of so many experts in the field of haematology all working to help people like me. The dedication and professionalism was superb. It was my honour to represent MDS UK and accompany Patient Liaison Sophie and Chris to fly the MDS Flag and promote our patients, carers and supporters and their needs.
We arrived home shortly after 11pm on Weds. I had to be at St Thomas’ the next morning at 10.30am for a linogram. No rest for the wicked eh? I was grumpy thurs morning as I couldn’t eat or drink or take all of my regular medication. After 2.5hours they finally took me into the interventional radiology theatres. The nice vascular surgeon explained that he had discovered a large fibrin sheath had grown over my Hickman Line which is why it wasn’t working so well. He said he could thread a wire up through my groin and into my chest and that it would have like a lasso on the end that could strip the sheath off. I was surprised that he was going to do it then and there. I was a little unprepared for it but I went with it as I was desperate to get the line working again.
It’s such a weird feeling that someone is pushing things into your groin and you get a pain in your shoulder. It also makes your heart beat funny. I could hear as well as feel all the palpitations. It wasn’t awful but it also wasn’t a pleasant experience. I asked the doctor if it would happen again and he said very likely. Let’s hope it’s a long time before it goes again.
After I came out of theatre I had to lie flat for another 2 hours. I finally got discharged at 6pm. I was hungry and tired and in need of a long cold drink by then. Sadly hospitals only seem to offer sandwiches in these circumstances. Hard luck if you don’t eat them. Something I think could be improved on.
The next day I went to Guys for 11am as I had to have 2 small fillings. I met the amazing Stacey who looked after me really well and put me at my ease. It’s very hard keeping my mouth totally clean. The GvHD means I suffer from an incredibly dry mouth. Sometimes my mouth and tongue are stuck together. It’s like peeling sandpaper apart. This means bugs are more likely to thrive. The wonderful team at Guys look after me well and I do my bit to keep my oral hygiene in tip top condition. Biotene mouthwash is very gentle and slightly oily and really helps the dry mouth without causing pain. I’d recommend to anyone else suffering from dry mouth. If you have a sore mouth too then add difflam. Again it’s mild and gentle and an ace pain killer.
After I’d finished at the dentist I went to the cancer centre and had ECP for the first time in a couple of months. Guess what. Only one of the lumens was oils draw. Oh my days. The nurse decided to put some stuff into the tube and we will try again on Monday.
I then received some sad news that a lovely friend of mine who I’ve known since 1977 died. Bert was a smashing fella and the world is definitely better for having had him in it. Very had the privilege of living to the ripe old age of 95. Not everyone is blessed by this. Death always puts things into perspective. I’m Berts case Death is not an extinguishing of the light. It is a putting out of the lamp for the dawn has come.
A busy week with lots of appointments and energy drains. I’m glad I can do it but it’s hard going. On Sat I prepared a baptism service for my great nephew Harry. Sunday brought the extended family to London and we had a beautiful and intimate service in The Lady Chapel at St Saviours. Thanks Nick Russell and the gang for your help and support. It was appreciated by all of us.
So what will this week bring? Monday is more ECP at Guys Cancer Centre and Tues is a day at Kings seeing the nutritional nurse and the Haematologist. And Weds I get to be away with my sisters and families for a bit of R&R and more birthday celebrations.
Let’s hope the sleep I’m used to returns tonight to help me get through yet another busy week.
Whatever you are up to this week I hope you find it has some light and love in it.
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