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!

 

 

Are you fixed then?

 

September 2015 was Blood Cancer Awareness month. I had no idea. A year ago today I didn’t know I had leukaemia. 24 hours later I had been diagnosed and my life changed forever.

Leukaemia is part of a group of 137 blood cancers which are the fifth most common cancers and the third biggest killer in the UK.

This year I’m acutely aware of Blood Cancer Awareness month. Every media mention, each poster hung, countless online discussions remind me that the campaign is a wee bit about me. It is about raising awareness in order to increase support for the research that Bloodwise does. About demystifying the process of stem cell transplants coordinated by Anthony Nolan.  Encouraging new and lapsed donors to regularly give blood.

I’m glad to be a Bloodwise Ambassador, particularly this month. Helping raise awareness by sharing my story is something real and positive that I can do. Countless others who’ve walked this road before me have contributed to my recovery. Now I’m paying it forward.

And the question in the title? I’m starting to glue myself back together, slowly, piece by piece. Who knows what the final outcome will be. What I do know is I won’t be exactly the same as I was before 15 September 2015. I think I’ll always be a wee bit wonky from now on. But that isn’t necessarily a bad thing – is it?

The importance of ‘getting your game face on’

I returned to Glasgow today to see my consultants and met a lovely couple, Cameron and Michele. Cameron is about +30 days from his transplant.

They’ve been reading my blog and both of them commented on how well I looked, as did Dr Chris who we also caught up with. I’ve not seen Chris since leaving The Beatson so he’d remember me at my most grotty!

Their comments made me think about the importance of making a wee bit of effort each day if you are able to. I know before anyone mutters that sometimes getting out of bed after a transplant is as much effort as they could manage that it’s not always easy. However, I genuinely believe that the psychological benefits of making an effort with yourself do pay dividends. Just look at the testimonials received by the Look Good Feel Better course attendees for confirmation of this.

Whilst undergoing my initial three rounds of chemo I managed to wear some make-up most days. My hair may have disappeared but I was lucky still to have eyebrows and lashes so my little bit of war paint brightened up my face and my day. Dr J was always keen to see which wacky colour of nail varnish I’d have on for his visits and the nurses were guaranteed as supply of remover if they’d mistakenly come to work with painted nails!

The first week or so after my transplant was a make-up free zone simply because I was feeling so rubbish but regaining the impetus to wear some mascara after about 10 days absolutely lifted my spirits and gave me a wee bit of myself back.

I think that the act of taking care of yourself and turning your strongest, most positive face to look your cancer directly in the eye is one of the patients strongest weapons. The docs have their arsenal of drugs and treatments but if this fight really is a team effort, then we patients have a responsibility to engage fully, not just to simply remain a passive bystander. We can do this by focusing on making small gains every day – even if that is only a slash of red lipstick or some perfume.

My ‘game face’ comprises as much positivity as I can deliver; some well applied make-up; my ‘best’ hair and even some wacky purple or blue nails!

Whatever gets you in the right frame of mind to keep taking bold steps forward on your road to recovery must be a good thing. (Not sure if I’d recommend purple nails for the guys reading this! Although Eddie Izzard carries of a red nail extremely well!)

Wishing Cameron all the best as he crunches through the next few weeks. As I said today, in February Day 100 felt like a lifetime away, but look, I’ve made it and so will you!

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.

Preparing for my stem-cell transplant

After the completion of my second round of chemo the doctors took a more in-depth look at my likelihood to stay in remission. There are loads of markers or flags in every patient’s leukaemia make up. These flags help doctors predict how likely each patient is to stay in remission after chemo is complete and whether further intervention is needed.

In my case instead of one flag, I’ve got double flags! Flag number one is an ok one and if it existed on its own the docs would be happy (given previous experience) to chuck me out now and say right, get on with life, the chances of you relapsing are pretty slim. However, my other flag is more of a red one. Its existence gives the docs more cause for concern.

People with this type of flag are more than likely to fall off the remission band-wagon and see their leukaemia return. So the advice from the docs – always reminding me “it’s your choice Aileen – you could take the risk that the red flag wouldn’t cause problems”, but in our view your best option of completely obliterating the leukaemia is a stem-cell transplant.

Coupled with my current age and otherwise good health, a transplant was highly recommended. I could have chosen to take a bet on the chemo keeping the leukaemia in remission, however the conclusion Steve and I came to was that there would always be a huge ‘what if’ hanging over our heads. (And if my betting average following our holiday in Las Vegas was anything to go by I’m not that lucky). We decided that rather than potentially have to undergo the whole chemo regime again and then have a transplant at some time in the future, it was better to bite the bullet now and get it done.

The docs were first of all keen to see if I could have a sibling transplant – however my sister wasn’t a match for me (only 25% of siblings do match). This then resulted in a search, through Anthony Nolan and other stem cell registers, to find me a good match.

What the docs are looking for is a tissue type match and to find one which is as close to 10/10 as possible. There are three registers in the UK plus a large number in Europe and North America which are also scanned for possible matches.

I am delighted to report that more than one matching donor (a MUD – matched unrelated donor) was found for me. Initially my stem-cells were going to come from a German donor, however on closer inspection an 18 year old UK donor has been found who is an even better match for me. I’m over the moon with the fact that the team have found me not only such a good match in terms of donor, but also the fact that I’ll to be 18 again!!!!!!!

So next steps. I’ve had a battery of tests on my lungs, heart and kidneys to make sure my major organs are up to the job of having the transplant as its a pretty big deal. The donor has now been officially asked to donate stem cells for me, and we have three dates in the diary where a bed is available in the stem cell transplant unit within The Beatson in Glasgow. The transplant itself is a simple procedure – really just like having a blood transfusion and takes between one and 2 hours. The stem cells are harvested from the donor in a process a bit like giving blood and then there is a 72 hour window to get the cells into me.

I’m spending my time over the next couple of weeks enjoying the freedom of only having to visit the hospital once a week for care of my Hickman line. I’m feeling well and getting stronger daily. I know that once I begin the conditioning treatment (my last chemo) in advance of the transplant, and then the period following the transplant itself I will potentially have some big hills to climb but I’m confident that this is worth it in order to be able to take back my life and turn the page to the next chapter.

If you could do one thing for me after reading this post it would be to register as a stem cell donor, and encourage others you know – particularly young folk – to do so too. You can register with Anthony Nolan with the NHS or with The British Bone Marrow Registry 

You’ve all played a huge part in my journey to date, and I’m sure many of you will have questions about the transplant, the gubbins of how it all works and what you might be able to do to help me and Steve over the next few months. The good guys at Anthony Nolan have thought of everything an recently published a Friends Guide which you can download and which will answer many of your questions. Have a read and I hope it will help you understand the journey we’re on. x

Unplanned admission

When I was discharged on Guy Fawkes night my plan was to remain at home for three or four weeks until my neutrophils recovered from the chemo I’d had. That plan didn’t work out!

Three days later I woke up with a streaming cold and a sore throat. Just a wee cold I thought. In normal circumstances it would have been. However, as the day progressed I began to feel more and more rotten. The afternoon was spent cuddling a hot water bottle. I was cold – and not just the normal post-chemo cold that I now often feel, but bone chilling cold.

The deal is that in order to be allowed home is that I must keep a really close eye on my temperature and measure it at least 4 times a day. Temperature going over 38 degrees is the most accurate way of letting a neutropenic patient know that there is a problem and an infection is building. Suffice to say, by mid evening my temp was 38.1. A quick call to Ward 8 confirmed that I was to get myself down to the Western where I was going to be admitted into Ward 11 (no availability in the luxury penthouses in Ward 8!).

I arrived in an unfamiliar part of the hospital (which it transpires is +100 old – and it bloody looks it too!). I was directed to a bed in an enormous ward with 3 other patients and told to get settled. But I’m supposed to be isolated I told the nurse, I’m at high risk of more infection . I should be in isolation. The response was pretty much – its a bed, get in and be grateful!

By the time all the paperwork had been completed and my first IV antibiotic had been hung up it was about 1am. This from a 9pm admission. They were cutting it fine as standard protocol for AML patients with neutropenia and likely infection is that IV antibiotics must be administered within four hours max. I’m now much more informed about other elements of this protocol and know that several elements were not followed properly on this ward.

Armed with more facts from my favourite haematology nurse I will have no hesitation in future demanding to see the haematology registrar on call if I don’t think that the doc who is dealing with me is properly across my care. I’m not having the work we’ve all done so far compromised by other doctors or nurses missing something due to them not knowing enough about AML.

I’m not saying they didn’t care, however the places I was admitted to was an oncology ward and many of the nurses had no haematology experience. I had to insist on bloods being taken every morning – because I knew that my consultancy team would need them to try and work out how to treat my infection. I should have had a complete screen for infection upon admission – this didn’t happen until I was finally shifted to Ward 8 after three days.

I pushed each day I was in ward 11 to be moved to the haematology ward mainly because I didn’t feel that my health was safe where I was. This old ward had 4 shared loos between 27 patients and 3 shared showers. There were 3 other patients and all their visitors in the ward with me…….the amount of potential for bugs was huge!

Finally after 3 days Dr J told me that there was a room for me in Ward 8. Despite being made to wait till 11pm for my move I was very, very grateful to be back where I knew everyone was totally on top of my care and condition.

It took an agonising 9 more days and 3 more antibiotics to treat my infection. We don’t actually know what the infection was – and two thirds of the time the doctors never know.  The test for success is to maintain a non spiking temperature range (below 38 degrees) for 48 consecutive hours. This shows that the antibiotics are working and I could go home. I managed to make it to about 40 hours three times, only to be bounced back to the beginning when I had a spike and the shivers!

We had a real giggle when the doc prescribed my final antibiotics as he directed the junior doctor to change my medication and said….”well that’s my budget blown for the year. These antibiotics are as expensive as it gets”!! I immediately took the opportunity to pull his leg and could instantly see he regretted saying anything……when I asked if I wasn’t worth it? “Of course you are, of course”……he stumbled and backed out the door!

Anyhow, I finally made it home and have spent the last two and a half weeks feeling really well and enjoying normality.

Oh – and I went to Glasgow. And I was told I’ve got a 100% stem cell match. I’m having a transplant in January!

 

 

 

 

Ding, ding – round two!

Wednesday 28 October, as planned I’m back into ward 8 for round two of my chemo. This is a much less stressful experience given that I know the drill – nurses are like old pals; the routine in the ward is familiar and even the 2 chemo drugs being administered are the same as last time so we know how to manage any potential side effects in advance.

The 8 day cycle begins late on the Wednesday evening (I’m even moved from a wee four bed ward into an isolation room at 10pm that night to allow me to kick off my treatment in good time). This pisses of one of my ward mates who does not understand why I’m getting the comfy single en-suite room whilst she has to keep company with a couple of pensioners….sorry love but my neutropenia makes my need greater than yours.

There isn’t much to say about this cycle. I get the H&P before my chemo (hydro-cortisone & Piriton) which stops my temperature spiking and is fab for helping me get a good nights sleep after my 10pm bag of poisonous stuff. There are honestly no bumps in the road during my 8 days. The doctors are visiting daily and are visibly bored with me – in a good way. Every day is the same – “I feel fine. No symptoms to report”. I feel like a bit of a fraud.

By Thursday lunchtime, 5th November, I’ve convinced Dr J that I’m good to go home and Steve-doll is here to collect me. Another ‘administrative’ delay means we sit about for 3 hours ‘waiting’ for someone to write my discharge letter and two people to count the number of pills I’m taking home.

They’ve known I was being discharged today sine Tuesday. Someone else is waiting to be admitted to my room to begin their treatment. But they haven’t done any of the admin in advance which would allow me to leave promptly. My project planning head is screaming “FFS does anyone think through the process and walk the customer journey in the NHS?”

The plan is that I will go home and spend my time quietly over the next couple of weeks till my counts recover and I’ve got over my neutropenic period. The district nurse pops in on Friday to give me a shot of a drug which will help speed up my white blood count recovery. I’ve to attend oncology outpatients for standard blood tests on Saturday and then from Monday its to be back to to the familiar routine of the haematology day unit three times a week.

Well that was the plan. However, the best laid plans as they say……

I spend 8 hours hanging about outpatients on Saturday. The place is going like a fair and the doctor (whom I’ve still not actually laid eyes on) is being a complete arse! I’ve had intermittent nose bleeds since Friday evening. This is due to needing a top up of platelets. No biggie. My nurse (who I know well from Ward 8) immediately recommends to the doc that she could order a bag of platelets and get me sorted in 1/2 an hour (which is how it works on the ward). He tells her in no uncertain terms to “get back in her box – he’s the doctor!”

The outcome is that I’m made to wait from 10am till 5pm for a half hour bag of platelets, whilst he insists on me also getting a four hour infusion of potassium. He won’t even allow that 2 to run at once. So tell me what’s the point of having a Hickman line with two ports – it’s so exactly this type of activity can take place at the same time. But here is an example of a non-haematology doctor not being up to speed with how this specialism operates.

This waste of time is infuriating. Even more so as I now know that he could just have easily sent me home with potassium tablets and I could have been out the door and away from all the bugs and germs in a couple of hours. Well, that’s another valuable lesson learned – I am now more informed and will be more demanding when solutions are being prescribed – the doc is not always going to have the final say!

And the impact of that long day – well it certainly contributed my next experience as an in-patient. More about that hair curling experience (if I had any!) in my next post.

 

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.