Since I last posted, there has been a significant date for us. 16 December marked four and a half years since Steve was diagnosed with mesothelioma. I hoped and felt, but never dared expect, that I would be able to say that when I started writing this blog. But it's a very good feeling to pass yet another milestone on this journey!
The last 10 days or so have been dominated by preparations and parties.
Preparations
We have started collecting information to look at and consider carefully before we meet Steve's consultant in January to discuss options now that the mesothelioma has started to grow again.
Andrew Lawson, doctor and fellow meso victim, has already given us some words of wisdom from his perspective as a seven year survivor.
Barts Hospital has come back to us with details of a clinical trial of a new drug called Tremelimumab due to start in January. Looks interesting but we are not sure whether Steve would be eligible as it appears to exclude people with a medical history of autoimmune diseases, including arthritis. Waiting for clarification on that and details of other trials currently recruiting at Barts.
We have asked the Specialist Lung Nurse team at our hospital to ensure that we talk to the consultant in January; told them we would like to know more about the Phase 1 VanSel clinical trail currently recruiting and sent links to the Barts clinical trials, so that we can have an informed discussion when we see Dr T.
Having started that ball rolling, we have at last made progress on Christmas preparations - cards printed, signed and posted; some presents on the way, others on order and due to arrive any time now (I hope!); wreath shining on the front door; the tree came inside and was dressed today, although we have yet to decorate the rooms, hang cards and distribute the ones we deliver by hand ..still, plenty of time to do that!
Parties
Having worked hard on the preparations, we thought we deserved a bit of partying!
The festive season kicked off with Em and Nick's engagement party, dancing until the early hours! That was followed by Helen's "Equator Day" gathering to celebrate that she has now lived in the UK as long as she lived in Zimbabwe!
Christmas proper kicked off on Sunday with mulled wine and mince pies at Tony's house, one of our neighbours just a few doors away, and a chance to chat with other neighbours we don't see that often.
Wride and Company (i.e. me and Steve!) travelled to London yesterday for the "office" Christmas lunch at Ronnie Scott's Jazz Club in Soho - an event which lived up to and indeed, exceeded, expectations! In fact, it was a complete hoot, with good food and wine, prosecco on the house on arrival, party hats, streamers, poppers and balloons AND kazoos for when people had loosened up a bit (which didn't take long). The house band were great, especially the second set where they invited requests for songs to sing in different styles, like a reggae version of Silent Night, and operatic version of Jingle Bells, Good King Wenceslas punk style....you get the picture.....
This will give you a flavour ...it's the last couple of minutes of the show - Steve is the one in the dark clapping like mad!!
With preparations to complete and more parties to look forward to in the coming week, I doubt whether I will post again this side of Christmas. So I will take this opportunity to wish you all well and send love from both of us to you and your families. And very special positive thoughts and hugs to the meso warriors and their carers, and those who find themselves alone this Christmas time, but not by choice.
Linda and Steve xx
The last 10 days or so have been dominated by preparations and parties.
Preparations
We have started collecting information to look at and consider carefully before we meet Steve's consultant in January to discuss options now that the mesothelioma has started to grow again.
Andrew Lawson, doctor and fellow meso victim, has already given us some words of wisdom from his perspective as a seven year survivor.
Barts Hospital has come back to us with details of a clinical trial of a new drug called Tremelimumab due to start in January. Looks interesting but we are not sure whether Steve would be eligible as it appears to exclude people with a medical history of autoimmune diseases, including arthritis. Waiting for clarification on that and details of other trials currently recruiting at Barts.
We have asked the Specialist Lung Nurse team at our hospital to ensure that we talk to the consultant in January; told them we would like to know more about the Phase 1 VanSel clinical trail currently recruiting and sent links to the Barts clinical trials, so that we can have an informed discussion when we see Dr T.
Having started that ball rolling, we have at last made progress on Christmas preparations - cards printed, signed and posted; some presents on the way, others on order and due to arrive any time now (I hope!); wreath shining on the front door; the tree came inside and was dressed today, although we have yet to decorate the rooms, hang cards and distribute the ones we deliver by hand ..still, plenty of time to do that!
Parties
Having worked hard on the preparations, we thought we deserved a bit of partying!
The festive season kicked off with Em and Nick's engagement party, dancing until the early hours! That was followed by Helen's "Equator Day" gathering to celebrate that she has now lived in the UK as long as she lived in Zimbabwe!
Christmas proper kicked off on Sunday with mulled wine and mince pies at Tony's house, one of our neighbours just a few doors away, and a chance to chat with other neighbours we don't see that often.
Wride and Company (i.e. me and Steve!) travelled to London yesterday for the "office" Christmas lunch at Ronnie Scott's Jazz Club in Soho - an event which lived up to and indeed, exceeded, expectations! In fact, it was a complete hoot, with good food and wine, prosecco on the house on arrival, party hats, streamers, poppers and balloons AND kazoos for when people had loosened up a bit (which didn't take long). The house band were great, especially the second set where they invited requests for songs to sing in different styles, like a reggae version of Silent Night, and operatic version of Jingle Bells, Good King Wenceslas punk style....you get the picture.....
This will give you a flavour ...it's the last couple of minutes of the show - Steve is the one in the dark clapping like mad!!
With preparations to complete and more parties to look forward to in the coming week, I doubt whether I will post again this side of Christmas. So I will take this opportunity to wish you all well and send love from both of us to you and your families. And very special positive thoughts and hugs to the meso warriors and their carers, and those who find themselves alone this Christmas time, but not by choice.
Linda and Steve xx
Posts
Happy 41/2 anniversary and have a great Christmas
ReplyDeleteWishing you both all the best
Amanda & Ray
thank you so much Amanda! Good to read that Ray's appetite has returned in time for Christmas. Whatever you have, I'm sure it will be delicious :-)
DeleteLinda and Steve xx