How am I doing?
8th November 2016 - as I type this on this very cold and crisp autumn morning I can't help but feel incredibly lucky to be doing so over five years after I was first diagnosed. At the same time I feel deeply sad for the friends I've made and who have lost their fight to this dreadful disease. Yesterday the Edinburgh Evening News published an article supporting my campaign to raise the funds to extend the Maggie's building at the Western General. It has been a lengthy process for the team at Maggie's getting to the stage when we can finally say "this is going to happen" & I am more determined than ever to see that building erected. My fight continues to be a hard one - I don't recognise the person who I was before or the life I had. I laugh and tell people I lead a very boring life and thats true but is at the same time it is a wonderful life. My heavily compromised immune system continues to be a major challenge and this year I've almost lost my sight due to a rare and complex virus. As always Dr Johnson pulled me back from the brink and I started under the care of the incredible Professor Bal Dhillon at the Eye Pavillion. As winter starts the fear of pneumonia looms large and I certainly resemble the Mitchelin Man when I go out wrapped against the elements. I am also concerned about my lack of protection against child illnesses such as measles. This week we will celebrate Maggie's 20th Birthday in the Edinburgh Centre and next week on the 20th we will host our legendary Glitteratea. As always support has been overwhelming.
19th December 2014 - As you've gathered I don't post lots of updates as to me it's pretty boring talking about myself and it is a roller coaster which does vary daily. I was at the Royal Marsden yesterday where I got the OK for Cycle 30 of the Trial Drug I am on - we are all amazed at this and while the side effects are at times brutal I am here and that is just the best christmas gift. I am incredibly grateful to my consultant and the nurses at the Western General and my consultant and his team at the Royal Marsden. I often laugh that I live the life of an old lady - but I just love having time with my children Ellie and Joe who make me so proud and are my inspiration in fighting this disease, my great parents who are simply incredible, my husband Peter who is terrific and our amazing friends particularly my girlfriends who keep me going every day especially when I want to just hide under the duvet. And of course Andy Anderson and all at Maggie's - they are my rock.
In what I refer to as my "prior life" in the Corporate World, before I went into tough meetings or to make presentations I would always have a squirt of my trademark perfume and apply my lipstick and take a deep breath - I then knew I was ready. That is how I now try and face every day, when I'm at home, in hospital and there have been days when I have been very ill and I've had my mum, Arran or Hazel put my lippy on or paint my nails and of course ensure my wig was straight.
On the topic of hair - my has now come back thanks to the superb care of Leanne at Cheynes in Drumsheugh - I love going to the salon where they all look after me so well and have been amazing in looking after my wigs and in nurturing my hair back - I think I may be starting to loose some again but that will just mean more fab wigs!
14th May 2014 - Its been some come considerable time since I posted an update on my personal health, mainly because its has been such a roller-coaster. Regreatbly the transplant did not do the trick and after a few worrying months I met with the incredible Professor Gareth Morgan at the Royal Marsden Hospital. He enrolled me on a clinical trial for a new drug and almost two years down the line I am still on it and remain indebted to both Gareth's team and my consultant Peter Johnson and the Haematology Team at the Western General.
The last couple of years have not been without drama, quite the opposite infact - I've had pneumonia twice, pleurisy, cellulitis, septisemia and numerous virus and infections. Everytime DrJohnson works his magic, calls it right and gets me back on my feet. The nurses in Ward 1 and Ward 8 are incredible and have become such a great support and friends - I joke with them that I check in like some people go to the spa or for a mini break!
Andrew Anderson and his team at Maggie's continue to be a massive inspiration for me and I remain bowled over by the support of everyone with our Challenge. Over the next few weeks we will be launching a build campaign - we've been working towards this for some time now and have the green light to go ahead from all the powers that be! This will enable the Edinburgh Centre to be extended providing crucial space and also therapies & treatments.
I continue to meet incredible people on this journey - people who like me are living with this disease, those who are newly diagnosed, those who have lost loved ones. Everyone has a story and the courage and determination shown by many is awesome.
Thanks as always to my amazing girlfriends, my mum & dad who have changed their lives completely to be here for me, my husband Peter who is there 24/7 for me and gets the rough side of my treatment, and my amazing children who keep me going every day - Ellie and Joe.
So, the last couple of months have certainly been a challenging journey! I am now into week 5 post my stem cell transplant and it has been so good to be at home in my own bed. The time in Ward 8 at the Western General was extremely tough, however the care received from the whole team there was fantastic and I am immensely grateful for their care, support and for getting me through those very hard weeks.
My focus now is to stay well and build up my strength again. It is really hard thinking that my immunity has been wiped out and I'm not relishing having all my immunisations again... still it beats chemo!
I continue to sleep lots and am now eating more and have moved onto a neutropenic diet with the support of the fabulous Kellie Anderson at Maggie's. I encourage anyone to check out some of Kellie's fabulous recipes on her blog at www.foodtoglow.co.uk - the Stephenson household are all converts!
The fundraising and support from so many friends, colleagues and family is absolutely amazing. To think we are not even into May and we have achieved 72% of our target - a huge testimony to the fantastic work Maggie's do - if you've not been into one of the Centre's I'd really encourage you to pop in, you'll certainly receive a very warm welcome.
Update as of 15th June 2012
I was warned by the transplant co-ordinator that my mind would recover more quickly than my body and I think those close to me will stand testimony to that as I have become increasingly impatient at my continued need to take things easy and not tackle everything at a million miles an hour which has always been my style!
Needless to say, despite the words of caution from the medics I've tried to push myself and faced the consequences resulting in a bout of para-flu and more recently shingles, which resulted in a brief stay in ward 6 at the Western - thank you to all the nurses who looked after me so well.
On the whole, I do feel as though I am making progress, my bloods seem to be behaving and with the benefit of fortnightly top ups of red cells my energy levels are improving - I've told Lesley (Ward 1 Sister) that it is only because I miss their chat that I continue to make these regular visits!
As ever, Andy and the team at Maggie's continue to be my "rock", there are dark days and on those I take myself down to the Centre and within walking through the door feel the grey mist starting to lift. I've already made such good friends at the centre and never cease to be inspired by the stories I hear or reminded just how fortunate I am. A hug from Jim, one of the long time volunteers, when I am feeling down is like being wrapped in a warm duvet and the smell of Guthrie's home-baking on a Friday is enough to make anyone smile.
May was an amazing month on the fundraising front and saw us smash through our £50,000 target. The Indulge Afternoon Tea at the Sheraton brought together more than 300 ladies and was a great opportunity for Karen Murray to showcase some of her dresses from Worn Once - check out her website if you have an event coming up. We had 28 "Lisa's Challenge" participants in Maggie's Monster Bike and Hike and they raised £17,000 not to mention the sore limbs and blistered feet - awesome. Then the glamour girls took to the air and travelled to Copenhagen for the Marathon, with Olwen and Hazel pounding the streets, whilst Lisa and Julia (aka the Doras) cheered them on the money flowed in with them raising over £2,500.
The sight of over 30 Stew Mels Lions boys including my son Joe, all in their rugby kit running in the Junior Event at the Edinburgh Marathon Festival brought several tears to my eyes and raised over £3,000.Then the wonderful sight on my girl Ellie, running with the Olympic Torch on the 13th June was just amazing - described by Ellie as the best day of her life, it was terrific to see so many friends out supporting on that day and the sun even came out. Massive thanks to my colleagues at LBG.
We are now looking forward to the innaugural golf day on Thursday 21st June which Sam Linton has pulled together, it is going to be a great event and I'll be doing a pixie dance all this coming week to ensure the sun comes out to play too:-)
21st August 2012
The weeks and months continue to roll by and with time my hair is now coming back - although I don't like how grey it is :-) I must confess to being rather fond of my various wigs and it has certainly cut down the time it takes me to get ready!
I have just been accepted on a new clinical trial run through the Royal Marsden - the team there under Prof Gareth Morgan have been fantastic and I know I am very fortunate to have been selected for the trial of this drug which is called Pomolidamide. The team at the EWestern in Edinburgh continue to be amazing and are providing all the wrap-around and support care and we are now 1 week into things. Already I can sense my body groaning at the thought of more poison and trying its best to reject the drugs - yet what were once unknown symptoms are now familiar side effects and hey it means the medication is doing what it needs to do.
I have to go to the Marsden each week so am getting to know the route between Edinburgh and there well. I continue to receive frequent blood transfusions (around every 10 days) and am doing my utmost to avoid catching any bugs etc.
The fundraising for my "challenge for Maggie's" continues at a pace - and we are almost at £100k, more if you add back the gift aid. I continue to be in awe of my friends, family and colleagues who provide such amazing support and have got behind this campaign with a vengence. I can't thank everyone enough.
UPDATE AS OF 8th FEBRUARY 2013
Since August I have been under the dual care of the Royal Marsden Hospital and the fantstaic Professor Gareth Morgan & his team and the Western General Hospital here in Edinburgh. Through the RM I am receiving a new trial treatment regime and have just started cycle 7. Chronic fatigue and the need for frequent blood transfusions are perhaps the most invasive side effects; I have also been trying to dodge the winter bugs without much success though.
I was delighted and honoured to receive a Great Scot Award last year courtesy of the Sunday Mail and to have been one of 6 finalists in the Scotswoman of the Year Awards on the 7th February. I find these events incredibly humbling and am just delighted that through the Challenge we are able to raise both awareness and funds for Maggie's. To have broken the £250k barrier is simply incredible and I cannot thanks supporters enough.
21st July 2013 - well this year has certainly been a bumpy one but thanks to my marvellous clinicians both here at the Western General and also at the Royal Marsden I am continuing to make progress and recover from some rather nasty setbacks. I continue to get amazing support from my fabulous girlfriends who keep me sane and prop me up on a regular basis. They also are ready to roll their sleevs up and help with the various Challenges as we undertake them.
No updates yet, check back soon!