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!

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.

 

The wait begins.

The doc explained that the chemo I’d received would destroy the leukemia but also wipe out the good bits too. I would have almost no immune system for several weeks. This is the main reason that patients being treated for blood cancers must be hyper vigilant and avoid infections at all costs.

In a healthy adult there are plenty of bugs carousing around our systems which are easily fought off and do us no harm. However, in my case being severely neutropenic – really low on infection fighting good white cells – means that I’m at high risk from colds, coughs, shingles and other bugs which could ultimately be very dangerous.

This also causes a challenge around what I can and can’t eat. After talking to the nutritionist I discover I must adopt a ‘pregnancy’ diet. I’m told I must avoid all shellfish, soft and blue cheeses, ‘live’ yoghurt and run a mile from deli and uncovered foods as the potential for contamination is high. Now when someone says no brie…….what do you think the first thing I dream about that night is. A huge, gooey, smelly brie with grapes (also not allowed unless they are peeled;)

The one small positive though is that unlike being pregnant, having chemo does not preclude you from having a gin or a glass of wine – phew! There is certainly a lot to think about before I simply grab something now and eat it.

So I must wait for my body to kick-start again and begin producing neutrophils. Every day at 6.30am we ‘do bloods’ and by 10am the results will be back for the doctor to study. Each day I ask expectantly “have my bloods changed….?” and am told no, nothing yet. We get today 27 since the start of chemo and I’m beginning to lose hope. Maybe my white cells are not going to re-boot? Does that happen? What can the docs do?

On day 28 one of the lovely registrars lets slip that there has been a wee move in my counts. She’s as excited as me. (The size of the move is from 0.000 to 0.01 !) But its a start. The next day there has been a further jump and by day 30 we are starting to see slow and steady progress.

And then the best news, I can go home! 31 days since I started this journey I’m being discharged and can go home for around 10 days.

It would probably make sense to explain the name of my blog just now as much of the inspiration was born out of the boredom of the 21 days I spent simply waiting. I decided to try to create a turban using bright coloured scarves every day. Looking online I found some instructions and realised it’s actually quite easy. So a new turban each day became a wee bit of light relief. Thanks to everyone who’s gifted me some beautiful scarves

pink turban

So now I’m away home to wait, this time to see if the chemo has achieved our next goal which is to get the leukemia into remission. Maybe by the end of this I’ll have learned some patience.

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

We’ve got the same initials!

After a night of little sleep and a trip through the bowels of the hospital at 3.30am for a chest x-ray I’m to be introduced to the ‘joys’ of a bone marrow biopsy. This allows the doctors to determine exactly the type of leukaemia I have, and therefore plan my treatment.

Now for those who’ve not had this procedure, let me bust some myths – there is no drill; there is no general anaesthetic (just a wee local) and the whole procedure takes less than half an hour. It feels more odd than painful and afterwards it feels like you’ve been kicked in the ass by a horse! Note to self – next time I have this done ask for the left hip because I normally sleep on my right side and couldn’t sleep comfortably for more than a week as the bruising developed

By early afternoon on the 17th September my consultant, Dr Johnson was ready to give me his diagnosis. A quick word on the doc – I clicked with him immediately and liked the ‘cut of his jib’. He is 100% honest, shoots from the hip and agreed with me from the minute we met that we’d work together to implement the plan to get me clear of leukaemia. He didn’t promise that I’d definitely be cured, but I believe he will help me have the very best chance possible.

So, my bone marrow and other blood results told the doc that I had Acute Myeloid Leukaemia (AML). There are 4 types of leukaemia – which is cancer of the white blood cells – and I’ve got a rare one! Typical, I always want something unique. Around 2,500 people in the UK are diagnosed with AML each year and its more common in folk over 65. So I’m not a typical AML patient – but actually that’s a good thing – the younger and fitter you are the better you are able to cope with the big chemo regime which is round the corner.

As I tried to process all of this one thing kept elbowing its way to the front of my conciousness – this bloody cancer has the same initials as me! Unlikely I’m ever going to be able to forget its name then!

The doctor outlined his plan for my treatment – 10 days of chemo (more on that shortly) and up to a month in hospital. We planned for the chemo to destroy the leukaemia but in the process it would also wipe out my entire immune system – hence the need for solitary confinement to protect me from all bugs and nasties.

Chemo would start the next day because we’d no time to waste. So, off I trundled to meet my new pals in Ward 8 which was to become my home for the next 31 days

A lot can change in six hours

Wednesday 16th September 2015 began as a pretty ordinary day. If I overlooked the fact that I felt completely rotten – wiped out, harbouring flu-like symptoms, a headache worse than any hangover I’ve ever had and still trying to rid myself of the mother and father of all cold-sores.

My lovely husband Steve drove me to my doctors for blood tests at 2.30pm, which the nurse ‘hoped’ would be turned around quickly so that the doctor could look at the results when I saw him in two days time.

I dragged my sorry ass home and lay on the couch unable to even concentrate on the Great British Bake Off. At around 9pm my house phone rang – no one EVER calls on this number…..it was an out of hours doctor from the Edinburgh Royal Infirmary.

She proceeded to ask me how I felt, and told me that she was looking at my bloods. “They don’t look too good” she advised. She couldn’t confirm it, however she was concerned that the tests were showing a form of leukaemia.

I was told to pack a bag immediately and go directly to the Western General Hospital, Edinburgh, where they were waiting to admit me. I threw random items into an overnight bag. My mind was in saying – “they’ve made a mistake, they’ve definitely made a mistake and I’ll arrive here and be told just to go home”.

Unfortunately there was no mistake. That call propelled me off the edge of a cliff and onto the conveyor belt which began my cancer journey.