From zero to hero

So it has happened. They are in. I’m now wearing my new stem cells with pride. 

When we got married in 2007, our wonderful best man Ian Robb devised a very ahead of its time movie about Steve and I. The sound track was “Holding Out for a Hero” as that was exactly what Ian knew I was getting with Steve. And what a hero he has been in every way. Ian – I’m glad I passed your test and was permitted to claim your best pal.

Well, I’m now the luckiest girl in the world as I have not just one, but two heroes. My 18 year old donor will forever be my ‘other’ hero and I hope that one day I shall have the opportunity to say thank you in person.

To be honest, thank you hardly cuts it, but as an opening line I hope that it will work? I’m in awe that someone so young would make such a seriously selfless act. Makes me think about my 18 year old self and what I might have done differently.

I’ve now been an inmate at the wonderful Beatson West of Scotland Cancer Centre for 10 days and in SCT (stem cell transplant) ‘speak’ I’m at Day +3. The chemo pre-transplant itself was smooth enough and other than feeling like I could sleep for Scotland at times and then sleep some more, that bit went OK.  Days +1 and +2 however have been pretty rough.

I’ve now experienced the awful nausea and sickness which I’d miraculously avoided throughout my entire treatment. Things were going a wee bit haywire at the other end too. Drugs for both have been liberally applied but currently I’d say a runny tummy wins hands down over the sickness. (At least you can read a book whilst stuck on the loo!!!)

The general view is that the new cells should be grafting onto me somewhere between day +10 and 18.  Whilst this is going on my blood counts have plummeted and the famous neutropenia has moved in. I know that this is only a temporary measure as once these new guys start working I will see my platelets and blood counts rising again. I’ll be prone to infection – hence my isolation cell – and will no doubt be calling on the services of the Scottish Blood donor bank again – thanks in advance!

This has been a ‘wild road’ (a wee colloquialism my Argyll friends will understand) and I’m expecting a bit more excitement before it becomes a scenic Sunday drive. But those who know me can testify that I am a bit of a lady racer and will eat challenges for breakfast.

I’m ready for this.

 

 

T – 2 days till Stem Cell transplant

Check in on Friday 12th February was smooth and painless – except for the wee blip of having to have my trusty Hickman line removed by ‘team Edinburgh’ just before heading to the Beatson. New line is now in place and working well.

The staff are all very welcoming and day one was filled with the usual admin, bloods, sharing my ‘protocol’ for the next Year! It’s really a bit like a project plan – which I’m very familiar with – and lays out what chemo, other drugs and procedures I should expect and when. There are even slots for my childhood immunisations (MMR, polio etc)

This week in the run up to my re-birthday on the 19th is mainly conditioning chemo to obliterate my immune system. I’ve already done 4 days of one hour sessions and then an additional 2 lots of 4 hour sessions – no ill effects thus far.

Today I have a one hour session, followed by a big bundle of preventative drugs then a 12 hour chemo shift which means I will be tied to my room 😦 Same regime tomorrow then it’s the big day. 

My donor is having his stem cells collected today, and I’ve got a crazy vision of them being frozen in dry ice, and rushed into a blacked out James Bond-Esk helicopter and raced to Glasgow.

Been talking to a number of folk around the hospital and it’s amazing how many think a stem cell tranplant is a big, invasive operation. When they hear that actually it’s really just like a blood transfusion for the recipient and a blood donation for the donor they are really surprised.  

To me this presents a big opportunity to communicate and demystify the process – which will hopefully encourage more reqistratoins to donate stem cells. 

And in some wonderful news from across the pond my pal Audrey “rang the bell” a tradition in the Moffitt Centre stem cell transplant ward when a patient grafts and can be discharged as she left yesterday at day 21 after her transplant to get rid of her AML. Still a way to go but that’s a huge mountain climbed my friend.  #goAudrey #inspirational

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

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.

 

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

Passing time.

I made a promise with when I was admitted – minimal day-time TV. And I can honestly report that I’ve fulfilled this promise.

That’s not to say it’s been easy. But given that my chemo might already be giving me ‘chemo brain’ and making me less on the ball, I don’t need to add Jeremy Kyle into the mix and damage my remaining brain cells!

So how to fill the days which stretch endlessly from 9am into the afternoon, and a visitor or two, up to evenings with Steve-doll and trying to find new and interesting stuff to chat over.  During and after round one chemo my saviour has been the current trend of adult colouring books. These come in many guises – intricate Indian inspired patterns; some inspired by horticulture or pop-culture. Friends have been sourcing a wide selection of books. I’ve tested them with pens and pencils – pens are my preferred option. 

It’s easy for me to fill two or three hours simply concentrating on my colouring. The most challenging decision is which colour to use next. Very calming. Very theraputic. Very un-me. But very welcome over the past weeks when I needed calm, relaxation and peace and when initially I couldn’t concentrate on anything else.

‘Chemo-brain’ initially left me unable to read more than a chapter of a book in one sitting. This really bothered me as I’m a voracious reader. I panicked because I love to read and didn’t want to loose this enjoyable passtime. 

Thankfully towards the start of round two the chemo-brain faded and has not come back. Fingers crossed that’s my share of it. Although its actually quite a good ‘excuse’ for me to use when I inadvertently forget a fact, a birthday or a name – who is going to argue that its actually just my rubbish memory;)

Radio has been a saviour too. Radio 2 is my prefered station; podcasts from across the BBC including some fab Desert Island Disks – who knew Jo Malone turned to smell to compensate for her dyslexia. I’ve uncovered some fab new music on Spotify simply because I’ve had time to browse the site properly.

I’ve not got into Suduko; Crosswords or puzzles. You’ll not find my dining table covered in 2,000 piece jigsaws and I’ve not become a movie buff. I’ve watched a wee bit more on Netflix but not overdosed on it.

So,  that’s how I’ve been passing my days. Gone is the calendar chokka bloc with meetings, events and appointments. I no longer moan about folk ‘stealing’ the only remaining hour in my diary for another needless meeting which could actually have been a simple phone call. Now appointments are at Outpatients and meetings replaced with blood tests.

I’m getting used to this (a wee bit) but don’t plan on making this a permanent change!

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.

Slow……slow it right down.

Everyone that knows me knows I detest lateness and people being slow for no good reason. I’ve got a serious challenges with folks who spend a lot of time “procrastinating”…..it drives me up the wall.

Spending so much time as an in and out patient with the NHS I’ve picked up some areas where there is a real waste of staff time – particularly the nurses time. 

A prime example is the  admittance procedure where a staff nurse must take a full written patient history EVERY time you are admitted. The same form is filled in numerous times, when a simple reprint of the original checked for any updates would be three times as quick, and 100times less annoying for the patient and the staff.

Also discharges. It’s agreed between the medical team and the patient at minimum 24 Hours before discharge happens. So why do the medical team wait till discharge day to order the patients medications to take home and prepare their discharge papers. Patients are left having completed treatment but “waiting” in limbo land till the pharmacist or some other layer in the system has time to do their bit of the discharge process. 

New folk are waiting on beds, needing to be admitted, and people who could be away home are simply sitting, clogging up the system because a simple plan wasn’t swung into place 24 hours sooner.

Today is another case in point. I was told to report for blood tests at 10am. The blood was drawn at 10.20. It took till 1pm to be informed that I was then to have a four hour treatment…….that’s a day of my life I won’t get back!

In many ways I don’t want to advocate making the NHS more like a business, however when it comes to processes and freeing up the time of the professionals to do nursing and medical care there is a great deal that our health service could learn from running a company.