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!

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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.

 

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.

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

Moving in and meeting ‘Big Red’

Following my diagnosis, Friday 18th September was Day 1 of my chemo regime. The team in Ward 8 threw their arms wide and welcomed me (god knows why as I looked like the wreck of the Hesperus). They’ve become my extended family over the past five weeks – a brilliant bunch.

Providing blood samples, being given various blood products and chemo is part of the daily routine for cancer patients. I naively thought my veins were pretty good – I’ve donated loads of blood very easily over the years. However we quickly discovered that the sight of a nurse with a needle made my veins run for the hills and disappear!

“Don’t worry” said the lovely Claire, “I’ve the very thing for you…..I’ll pop a PICC line into your upper arm and everything can be done through that.” This line was to stay implanted throughout my treatment. Claire used an ultrasound to guide the huge 50cm line through my upper arm and into a big vein in my chest. All felt well and I breathed a sigh of relief. The nurses could help themselves to blood whenever they needed it and my chemo would be fed straight in using this.

My first Friday evening in hospital was spent in the company of ‘Big Red’ (aka Daunorubicin). This is one of the 2 chemo which I was to be given over the next 10 days. Even in the world of chemo this one is VERY serious. It is allied to things used in chemical warfare! It can only be administered manually by a specially trained nurse. The nurse sits with you and feeds 2 big fat syringes into you over twenty minutes watching you like a hawk in case of problems.

The colour, the concentration of the nurses when using it, the potential problems it could cause all rammed home the danger of this stuff.  I just have to trust that this poison was actually going to do me good in the long run. I quickly saw how many variables there are with chemo – my bodies reaction; the drugs that could be administered to counteract side effects and how different every individuals reactions could be. I would also be given Cytarabine as my other chemo. Between them they could cause hair-loss, temperature spikes, sickness or nausea plus a load of other potential nasties. Great!

My nurse during that first night after ‘Big Red’ was Karen. She’s a brilliant, incredibly hard-working wee wuman from West Lothian. And she laughs just as loudly as me! She has become one of my shining stars and I trust her with my life.

As my temperature spiked way over 39 degrees she was on it and managed my delirium instantly. She knew exactly when ice packs should be used and that an ice-pole was what I needed at 4am! She and Steve can now make me giggle about the fight I had with them that night as they tried to wrestle my blanket off me – they were told to f*** off because I thought I was freezing when actually I was boiling up!

Good to meet you ‘Big Red’…..you’d better be worth it!

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