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!

 

 

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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?

Digging Deep – you’ve given so generously

 

New York
Lady Liberty (& Gordon Hodge) #kickingcancersass

I received a message this afternoon from Keri @Bloodwise in Edinburgh to tell me that colleagues from work (Scottish Enterprise) have just donated a further £776 to the charity.

Once again I’m blown away by the generosity of my friends, family and colleagues. A quick tally brings us to over £6,000 raised now and shared between Bloodwise, Ward 8 at the Western General, Edinburgh and Macmillan.

IMG_0511
#GoHelen

I’ve tried to pass on my sincere thanks to everyone who has made huge efforts to fund-raise in my name but I know that there will have been lots of you that I’ve not been in touch with yet. Please know that your efforts mean the world to Steve and I and that every £ is going to make a huge difference.

As you can see the fundraising t-shirts co-ordinated by Auntie Barbara and her ‘team’ made it to many corners of the globe (NYC, Melbourne, Granada, Dubai, Belgium, Bali & Edinburgh to name but a few).

These images have made me smile over and over and I never fail to be impressed that so many folk have made so much effort in my name. And here’s what it has all been about. Getting me from this on 19th February 2016

To this on 26 June 2016!Sunnyislay

#KickingCancersAss 

 

 

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!

The importance of blood donations

Since my last post I’ve completed my third round of intensive chemo and spent an unplanned six nights in hospital with an infection which we think was hanging about in my Hickman line.

I’m now in what I call the re-building phase where my body gets back on its feet following the battering of chemo. My blood counts, neutrophils and platelets are all coming back to life and I’m producing my own red & white blood cells and vital blood clotting platelets.

Chemo batters hell out of your body. I’ve been generally extremely lucky in terms of the impacts and side effects. I have however needed the support of blood and platelet donations to help keep my tank topped up when my body was unable to do the job for itself. In just 48 hours from Boxing day I received 5 pints of blood and 2 units of platelets (which came from 8 separate donors). This now takes me over 40 pints of blood since my diagnosis in September.

I am overwhelmed by the generosity of those who regularly give blood. Without your gift I would be unable to do my job and work with my team to fight this leukaemia.

There are additional signs that I’m starting to bounce back after chemo. I’m less tired and I find it easier to deal with post-chemo fatigue. And my hair is coming back! I’ve got about an inch of fluffy ‘baby hair’ which seems to be visibility sprouting more every day. As you can imagine there is lots of leg pulling about the likely colour it will eventually be with several smart arses claiming that its definitely looking red!

To register and donate blood or platelets click www.scotblood.co.uk

 

 

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.

 

Chemo – the other bits.

What’s the image that springs to mind when you think of someone on chemotherapy? A bald, sick, gaunt person? Someone unable to summon up enough energy to get out of bed and do much meaningful stuff? Mine too.

So you can imagine that I went into the first cycle of chemo feeling more than just a wee bit nervous about what was in store for me. I’ll be very honest now and say that I think I’ve been remarkably lucky. I had the infection in my PICC line. For the first 3 days I experienced very spiky temperatures which made me a little bit mad for a few hours (or more mad). My weight went absolutely through the roof – gaining 10kg in about 4 days due to water retention. But really, that was it.

The docs prescribed anti-sickness drugs before chemo kicked off, so I didn’t have any issues with this or even nausea. Now those of you who know me and my appetite will understand how important this was to me. And, given the surprisingly good quality of food at the hospital I was filled with glee that my appetite was maintained.

Hair! Or loss of it. This was pretty likely to happen with the type of chemo I was having. So preempting baldness I asked Lisa my hairdresser to come in and cut my hair short (see picture above) so that when it did start to fall out it would be far less traumatic. In the grand scheme of things (I think at least) that loosing my hair for a while is relatively minor. And on the plus side I’m saving about £20 a week on products and half an hour a day on washing and drying. It was all shaved off about 10 days after chemo finished and I can report I’ve actually got quite an attractive shaped head!

HEnergy was another area that I was worried about however as my visitors will attest I was still able to stay awake through most visits. (and if I did nod off it was because your chat was mince!) I did get what friends in the know have described as ‘chemo brain’. My generally decent levels of concentration fell right down – one chapter in a book, or 30 mins of a film were about as much as I could deal with in one sitting. This from the girl who could previously easily devour a whole book in one sitting!

However, I’m pleased to report that 3 weeks on from the end of my chemo, concentration levels are back and books are once again being devoured with gusto. I think that the process of remembering and writing all this down for my blog has re-sparked my brain too. Which makes me even more inclined to agree with the premise that attitude and approach contribute just as much as medication to positive outcomes.

I’ve believed from day one that I’ve got a role to play in my recovery which is about grabbing my cancer round the throat and looking it square in the eye. I’m not the disease and it’s not me. I am more powerful than it and I will move it right out of my way. It’s simply a ‘bump in my road, an obstacle which I will overcome. And dealing with any of the potential side effects of treatment fall into the same category.

Ask me this again if I’m feeling really rough at some point and I sincerely hope that I will still have the same will to fight. I think that I will.

The demise of my PICC line.

When Claire inserted my PICC line she and Amy her helper were ultra careful to make sure to avoid any chance of infection. However, there are never any guarantees and just 3 days after having it put in my PICC was showing worrying signs of something not being right.  A wee red ring appeared around the entry site of the PICC. The nurses told me to keep a close eye on it over the next few hours.

I kept both eyes fixed on my left arm from then on. As I watched, an ‘alien landing site’ appeared – it looked so odd I was being visited by nurses and docs for about 2 weeks to ‘have a look’ at my arm – because they’d never seen anything quite like it! The wee red circle grew from the size of a 10p very quickly to the size of a bagel on the inside of my arm. It was purple and surrounded by evenly spaced dark purple dots. “Right” the nurses said…..”that’s coming out, NOW”. So my saviour from the needles was being torn away from me. My arm had turned rigid from the elbow upwards. The PICC site was seriously infected and throbbed.

It’s taken 4 weeks for this guddle to rectify itself and there is still a vague blueish tinge to the inside of my arm, but getting the line out and pumping me full of antibiotics did eventually sort out the infection. It sometimes happens apparently and PICCs are more likely than Hickmans to get infected like this. But I was just so sad because it meant that my next 6 days of chemo were going to have to be done via a canula in my hand / arm / wrist.

A canula is probably something that most folk will recognise – think about ER or Casualty and if someone is linked up to a drip for fluids or bloods they are likely to have a canula on the back of their hand. That’s fine if it’s a quick one-off but I needed access for fluids, bloods, antibiotics and chemo to be given to me – sometimes for up to 14 hours a day. And the guys also needed to take blood for testing daily to check progress. Each canula can be used for maximum 48 hours – but some of mine only lasted 2 or 3 before the vein gave up and it had to come out.

I think my most pissed of moment so far was on the second last day of chemo when I had one canula in each hand, both attached to a different bag, and keeping me prisoner attached to ‘Pole’. When one vein gave up and the nurse had to remove the needle she clearly saw how much all of this digging around for veins was getting to me. “No more for today” she promised. “You’ve really had enough of this, haven’t you?” I was very, very grateful to her for taking ownership of that rubbish situation.

One wee light at the end of this tunnel was the news that I’d snagged a surgery slot on Monday 26 September to have my Hickman line inserted. I was slightly trepidatious about having this ‘thing’ inserted into my neck and coming out of my chest, but it was solving the disappearing vein problem and that was huge.

The procedure was ‘different’ and my hand holder during it was mental. We roared with laughter about friends in common and her ex-husband!  We caused a riot in theatre and even got the surgeon involved in a debate about which Islay malt was the ‘best’.

Always good to bring a good dram into the conversation – it certainly took my mind of my surgery 🙂

(Oh and I prefer Ardbeg, and he likes Lagavulin).

You can’t eat a whole elephant.

Not in one sitting. But really it’s just a month’s worth of food, or long-term goal, and as with anything we set our minds to, breaking it down will make the job easier.

When Dr Johnson outlined my treatment plan which could easily be six months long (or more), include weeks in hospital and see me having several rounds of chemo I had to swallow really hard. This was a mammoth undertaking. But my ‘work’ head kicked in. I’m really grateful that I’ve got experience of breaking complex projects down into manageable chunks. I know it might not suit everyone but that’s how I’m approaching my cancer journey.

First – I’ve got the big, long-term goal of being cancer free. That’s stuck to the wall and I look at it and remind myself that all my wee achievements will lead to this eventually. Then I’ve broken the job down into wee tasks and goals I’ll achieve – making it through Chemo round one; getting enough neutrophils to be allowed home for the first time and so on.

And then there are the jobs that I’ve got to let other people do (not easy for me as many of you know I’m a control freak) – so there are the doctors and nurses jobs and what I need to do to support their efforts. The most important thing here is for me to work on my patience – Susan and Paul – I’m sorry but I think you’ll agree that this is still something I struggle with? Perhaps this will help me become less of a “just bloody do it” individual (aye right!!)

So it’s about me and my team and how we all work together to reach my big goal. And my team also includes all the non medical people – you – my family, friends and Steve-doll are even more important because you are supporting me to achieve my mental and emotional goals.

You know me and know that this isn’t a tears and snotters journey. You feed my hunger for laughter and bring black, inappropriate humour into our conversations every day. You bring me wine and gin & tonic chocolate rather than grapes and tissues. You guys rock!

The other reason that I’ve got elephants on my mind is thanks to my pal Moira the Yogi who sent me ‘Ganesh’ the Indian god with the elephant head. He is Lord of Good fortune and the Remover of Obstacles. He’s now a proud member of my team too.

If you want to help me eat my elephant grab a knife and fork and pull up a chair. Bon appetit!

elephant