Fundraising for Maggie’s & Bloodwise

Below are the prizes which have been generously donated by colleagues & friends from across the tourism and hospitality industry and art world. They make up the Grand Christmas Draw which is taking part at Travel Massive Edinburgh’s Christmas event on The Royal Yacht Britannia on 6 December.

Tickets (£5 each) will be on sale at the event and in advance. Contact – @AileenLamb @LesleyJudge @KatyOnTheGo @NatAllera to purchase tickets.

All funds raised will be split equally between @maggiesedinburg and @Bloodwise_Scots

For more information contact aileenlamb1@gmail.com

Overnight stay for 2 in 5 star luxury Hideaway The Hideaway Experience https://www.thehideawayexperience.co.uk/
Framed Print JoLoMo http://www.jolomo.com/
Private after hours tour of Kelvingrove Museum. Kelvingrove & Intermezzo Arts http://www.intermezzo-arts.com/
Luxury sherry prize The Sherry Boutique http://sherryboutique.com/
Watercolour painting Matt Forster http://mjforster.com/
Personal styling voucher Inspire & Style http://www.inspireandstyle.co.uk/
2 x Cut & Blow Dry Dean Jones Hairdressing http://www.deanjoneshair.co.uk/
4 x Rafting tickets Splash Whitewater Rafting www.Rafting.co.uk
Private dorm room for 2 people for 2 nights Morags Lodge Loch Ness http://www.moragslodge.com/
3 day tour of Irleand for 2 people Shamrocker Adventures https://ww2.shamrockeradventures.com/
Overnight for 2 with breakfast Roxburghe Hotel, Edinburgh https://www.theroxburghe.com/
Weekend break for 2 Gartmore House, Trossachs http://gartmorehouse.com/
Boozy Snoozy Lunch for 4 The Bonham, Edinburgh https://www.thebonham.com
Craft beer – 1 crate & 1 mini keg Windswept Brewing http://windsweptbrewing.com/
Tickets & interval drinks for Funny Girl staring Sheridan Smith The Edinburgh Playhouse http://www.atgtickets.com/venues/edinburgh-playhouse/
A nights B&B for 2 Millers64 http://www.millers64.com/
2017 Glasgow’s Music Mile and 2017 Merchant City Music Tours – each for two people Glasgow City Music Tours https://glasgowmusiccitytours.com/
Family pass Camera Obscura and World of Illusions Edinburgh http://www.camera-obscura.co.uk/
Glasgow city tour for 2 @Bairdtravels – Scottish Travel Blogger http://www.greattravelimages.com/index.html
Lunch for 2 in the Century Bar Gleneagles Hotel http://www.gleneagles.com/
The Ultimate Cheeky Chompers Gift Pack Cheeky Chompers http://www.CheekyChompers.com
Weekend self catering break for up to 4 people Pitenweem, Nr St Andrews https://www.tripadvisor.co.uk/VacationRentalReview-g729739-d11799148-Seafront_semidetached_house_sleeps_4_in_East_Neuk_village_near_St_Andrews-Pittenweem_.html
Best Selling Box of a dozen perfect pies Simple Simons Pies
http://www.simplesimonspies.co.uk/menu_pies.htm
A days fly fishing for 2 people (instruction, permits, equipment, lunch, photos) Scotia Golfing http://www.scotiagolfing.com/discover-scotland/golf-and-fishing-tours/
A 2 hour Walking Tour of the Royal Mile for up to 4 adults including entrance to Edinburgh Castle Celebrate Scotland Laura is a Scottish Tourist Guide Association Member from Celebrate Scotland
Fire and Light Show Falkirk Community Trust http://www.falkirkcommunitytrust.org/whats-on/events/event.aspx?eid=4579&did=22386
Kelpie Tour Tickets Falkirk Community Trust http://www.falkirkcommunitytrust.org/whats-on/events/event.aspx?eid=4579&did=22387
Signed copy of Andy Scot’s Kelpie Falkirk Community Trust http://www.falkirkcommunitytrust.org/whats-on/events/event.aspx?eid=4579&did=22388
1 day private driver guide tour of Perthshire including a visit to a whisky distillery for 2-4 people See Scotland
Art Book Matt Forster http://mjforster.com/
£100 voucher towards Julie Galante artwork Julie Galante
Sherry tasting for up to 10 people in your own home The Sherry Boutique http://sherryboutique.com/
2 Spirit of Scotland Travel Passes ScotRail https://www.scotrail.co.uk/offers/travel-passes/spirit-scotland-travelpass
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Moving on.

Its 13 months now since my diagnosis with Acute Meyloid Leukaemia. A big part of ‘moving on’ for me has included looking back and acknowledging how far I’ve come.

I have quite sketchy memories of how ill I was when I was admitted to hospital. Being unable to ‘walk the length of myself’ and requiring up to three IV antibiotics at once because of sepsis hammer home the speed and severity of AML striking.

The faint blueish tinge which circled my inner arm following a horribly infected PICC line has at last gone. The 3 scars on my chest and neck which show where my Hickman lines were are fading. I remember how annoyed I was that I even needed one. So 40 odd units of blood and hundreds of vials of blood to be tested later, these lines were simply a life saver.

I remembered the other day how I’d spent late September and early October 2015 waiting for my neutrophils to rise after my first, 10 day long chemo. No matter how often I asked, no matter how much I hoped for the numbers to move up, the docs experience was bang on. He said it would most likely take a month from starting chemo to my being well enough to go home. 31 days later, I escaped! Granted it was short lived and less than 72 hours later I was readmitted due to infection – but I got a wee taste of outside.

When I heard in late November that I was to have a Stem Cell transplant (SCT) I knew virtually nothing about that process. 3 short months later my understanding was deep and often comprised of ‘too much information’. I’d had the ‘this could kill you or cure you’ conversation with the transplant team, they’d narrowed the worldwide search down to an 18 year old UK male who matched me 10/10 and I’d been fed through the SCT sausage machine. Coming out the other end I was more battered and bruised than I let on. But I was still here. I’d jumped the first hurdle.

Stuff anyone who pooh poohs the target of +100 days. It’s bloody important to have positive goals to focus on when you feel like you’ve been to hell and back. I still felt pretty rotten on day 100. But I knew that I was 100 times better than when I’d just been discharged. Any I’m a million times better today.

So many things have changed – in me, in my life, in the world around me. However what’s strangely comforting is how much has remained the same. There is actually something nice about being able to still do things I did pre-diagnosis. Probably  because despite my wholly positive outlook during my treatment there was always a degree of panic about what could go wrong. 

And now that I am feeling a million times better I wanted to tip my hat to those who’ve helped me and kicked my ass along the way. My husband Steve, has had to witness stuff he really shouldn’t have. He’s put up with me having the SCT version of constant ‘morning sickness’ for four months. He held our world together and kept it real for me. He was quite simply my saviour.

My family and friends have rallied round and done crazy big things to fund raise, tiny every day things to keep my spirits up and generally gathered round me to make sure I kept marching ahead every day.

I’ve written before about the amazing care I received from NHS (The Western General & The Beatson). But there is also the care that Maggie’s provided for ‘my head’. They’ve more than fulfilled their founders mission that people with cancer never “lose the joy of living in the fear of dying”. I’m loving living, every single day!

Bloodwise have stood head and shoulders above other cancer charities for me. From the disease specific information they supplied to the chance to interact with others who’d already walked the road I was travelling. They are a young, dynamic and hugely caring team who genuinely believe that together we can beat blood cancer. Their belief in me, and the support they’ve given me to ‘pay it forward’ and help others who are just starting this blood cancer journey as been truly humbling. I hope that I can be a good ambassador for them.

So, its with a positive outlook that I turn and continue my journey on the road to normal (and all the new, different and exciting places I’ve not yet visited). A fellow SCT recipient said to me today, “I feel its time to draw a line under this, and move on”. I agree. We’ve made it to the end of this crappy chapter. Lets turn the page and dive into the rest of the book!

 

 

MISSING

As I twiddle my thumbs waiting for my graft to happen and my counts to wake up – I’ve been thinking about the things I’ve missed most since my diagnosis in September.

Undoubtedly the most significant thing is freedom. Freedom to plan, go outside, travel and even freedom to eat soft poached eggs!

I’ve realised that most of us take our freedom for granted and its withdrawal came, for me at least, as an almighty earthquake. I was living life to the full. At 100 miles an hour – and loving it. Steve and I have travelled to some wonderful places and I relished any opportunity to plan adventures.

We have a very good social life and a week without a night out with friends for food and drink was rare. My work also provided me with lots of freedom. To meet new people, develop exciting projects – basically freedom to dive in and get involved.

The current loss of ‘travel privileges’ is absolutely murder! We were forced to cancel three exciting trips between September and January as a result of my diagnosis. Our month in South Africa for Christmas was to be the highlight of Steve’s ‘big birthday’ year. What a blow. All on hold.

What is sustaining me though are the experiences of others I’ve met who have  beaten AML. Only this week I’ve seen pictures of Scott whose now 2+ years clear on the slopes in Switzerland and heard about some of the holidays Liz has been on in her 10 years since SCT.

I must temper my patience and find a way to content myself with comprehensive planning – even at first if it’s simple a weekend away in Scotland. That will give more pleasure that anyone can imagine.

And I look to my friend Ann and her lovely husband Ian who has been a warrior, continuing to beat his cancer diagnosis. “Get planning” she told me. “It’s the fuel that inspires you to keep going through rough days”.

I couldn’t agree more. My notebook is filling up with ideas.

Look out world I’m coming to get you.

Achieving remission – that’s one elephant leg devoured 

There are two distinct phases to the treatment of AML. These are induction chemo which is used first to get rid of at least 95% of the leukemia in your bone marrow and blood. Followed by consolodation which is used to lower the chance of leukemia coming back.

My first two cycles of chemo are induction therapy, and a simple bone marrow biopsy at the end of cycle one confirms that I’ve been able to achieve my goal and am in remission. This is brilliant news and really bosts me as I get ready to go back into hospital for my next chemo -another eight days of induction.

The remission means that the leukemia cells have been banished and my own body is now able to once again produce the good white cells I need – so I’ve proven that I can ‘work’ again properly. Unfortunately only 50-70% of patients achieve remission with induction chemo, so I’m delighted with whats been achieved.

My next chemo is 8 days back in solitary – receiving the same two drugs as I’ve had before. This means we know what my triggers and side effects are and will be ‘all over’ them before they give me any problems.

The doc has explained that next steps will be consolodation therapy. This consists of 2 more 5 day cycles of chemo and possibly a stem cell transplant. This is needed to make sure that the leukemia does not come back – and of course is just as important – if not more so than the induction phase.

We don’t yet know if I will need a stem cell (what used to be know as a bone marrow) transplant. As I get to the end of induction, and once more data is available Doc J will make a call on this. Liz, the transplant co-ordinator is already out scouring the ‘high street’ for a good match for me in case we need to do one. 

In the UK we are lucky enough to be part of a wider European network of donors so I could just as easily end up being gifted stem cells from Spain or Germany as Stornaway or Glasgow.

There are always more people required on the stem cell register. In the UK this is run by Anthony Nolan. They’ve told me that they recruit most from the young male population (under 30) as this group are most likely to have the quality and ‘strength’ of stem cells which achieve most positive outcomes. So all my young, male friends please do think about joining – its a simple blood test which could lead to the gift of life for someone like me.

Achieving remission has been a big and important goal and represents at least one elephant leg. 

I’ve learned so much in the past few weeks. About myself – and my capicity to deal with stuff. About leukaemia and stuff I’d prefer never to have had to learn about to be honest. And about the big safety net which is my friends and family. 

This grows bigger and stronger by the day. I will never forget how much comfort it gives me, knowing that if I fall off this rollercoaster there are so many folk underneath, hands joined and ready to catch me.

Thanks and love to you all. x

Being at home – the world outside.

After 31 days in hospital the simple act of walking outside and into fresh air gives me so much elation. And a fair degree of trepidation.

I’ve been cosseted in a world of infection minimisation. There have been professionals on hand 24/7 to respond to every random question or worry I’ve wanted to discuss about my condition, symptoms or side effects. Now I’m responsible for myself. Armed with loads of sensible and practical advice I still feel a bit like a new parent when they are handed baby……oh shit…..what if I break it!

I go for coffee and out for dinner…..I need to make the call on what’s safe to eat and drink and how busy, is too busy, in a cafe. I turn into Mrs “hand-gel” which makes me think I must have been a manky thing before. I am washing my hands more in a day now than I ever did in a week! And I’m having to avoid the easy way into town on the number 23 bus…….because buses are UNCLEAN!!!!

However despite all of these new wee elements that I’m having to work into my routine, it is wonderful to be out. Free. At home. I can eat and drink when I want. Lie in if I want to. Mooch about to my hearts content. Potter in my lovely new kitchen which was only finished a couple of weeks before all this merrygoround began. 

I’m enjoying the wee stuff. A walk in the Meadows. Going out alone and doing exactly what I want to do. A quick look around Harvey Nics. Normal stuff. Stuff that I took for granted. Until my life got interrupted.

Until something catastrophic occurs in your life I doubt that any of us would have the capacity to get our heads around just the level of interruption that is caused. We are happily on our wee treadmills of going to to work, going out and enjoying our life with our friends. We set our schedules. Make our own choices about what we do and when.

Since my diagnosis, despite my will to hang onto ownership of the bits I can control, I’m finding it a challenge to let the NHS machine take over so much of my every day life. It’s helping to fix me, but as I’ve said before, there are plenty of bits of the NHS that need a good fixing. Perhaps if I felt that the ‘system’ was more fit for purpose, I’d be more relaxed about letting go.

Until I do feel that way, I will be holding onto the control I’ve got and won’t be shy about voicing my opinion if I feel that some element of my care could be working better. 

I’ve never been able to bite my tongue – having leukaemia isn’t going to change that.