Day +14 (and +13): Selective memory

A memorable photo of tulips outside St George’s, by my father

While browsing a forum for stem cell transplant patients, I was fascinated to read about one woman who has absolutely no memory of her transplant or the days before and after the procedure. She was looking for reassurance that there was nothing untoward in her lack of memory, particularly given the detailed stories being recounted by other transplant patients. It turned out that she wasn’t the only one, though – others seem to have blocked out at least some parts of the experience.

Today I was talking to my uncle, who was fondly reminiscing about the buzz and camaraderie of his high-level legal work in Singapore, having moved back to to the UK and taken on a gentler workload from his new base in Somerset. He was aware, however, that in looking back at that time, his memories tend towards the good moments while ignoring the drawbacks of what was a highly pressurised, time-consuming and often draining role. I believe I’m the same when I recall my previous time in hospital; it’s easy to look at my first battle against leukaemia as quite a fun and interesting adventure, while forgetting the painful moments, difficult procedures and various setbacks.

The human mind, it seems, is often very good at providing a rose-tinted view of the past. Perhaps this is to protect us: to remember the tougher parts of our history would be to relive them, and this is likely to be far from cheering or encouraging. On the other hand – as my uncle said – the grass is always greener on the other side: when going through a low patch, events from our past can seem glorious, even when in reality they were never as perfect as we remember. The passing of time rubs out a lot of the tricky moments that perhaps we do not want to remember, which is perhaps why you sometimes hear people longing for a better, bygone era that never really existed.

And so to the present. I wonder which memories of my stem cell transplant will burn brightest as time goes by. The toughest time so far this time around has probably been during the MARALL trial, but I’m already remembering it more fondly as the treatment that got me into remission. The crucial days immediately after my transplant have provided few defining moments to pin in my mental scrapbook – but of course Day Zero will always burn brightly in the memory.

Days +13 and +14
It’s partly the sheer uneventfulness of Day +13 that explains why for the first day after my transplant, I failed to post on my blog. There really wasn’t much to report on the medical front, and I was feeling a bit too tired to conjure up anything more creative. The only real news was that my neutrophils were down to 0.6, so I had another shot of G-CSF, although that is probably most interesting in relation to today’s news.

SUPER-KAPOW!

For today my neutrophils shot up to a remarkable 6.6 – I don’t remember reaching such heights at any point since they have been recorded. I’ve always been pretty sensitive to G-CSF, but I like to think that such a leap is only partly due to the growth hormone, and partly the result of strengthening production by my flashy new bone marrow. Apparently it’s quite normal that they fluctuate before settling, so I’m sure there’ll be a lot more ups and downs to come.

I also had my ‘chimerism’ tested for the first time today. We won’t get the results until a few days’ time, but when we do we’ll know what percentage of my cells have been produced by the new bone marrow and what percentage come from any of ‘my’ residual bone marrow. However, this, too, is expected to fluctuate a fair bit: apparently the first test usually shows up as 100% donor cells, before dropping to about 80%, only reaching a true figure (hopefully 100%) when it settles later on.

Otherwise, I’ve been a bit more sleepy but still enjoyed a lot of family company today. I’m a bit sniffly still, so I’m not sure how well the Tamiflu has dealt with my influenza, but doctors seem relatively unconcerned. Counts (including liver function, critically) are looking good, so I may get to go home sooner than expected. As always, though, I won’t believe it until it happens, and in the meantime I’m quite comfortable here in Bed 6.

The days are shooting by, though – tomorrow I’ll be halfway towards Day +30: the first milestone!

Relative hair loss with uncle Philip and Fred

Day +12: Charity case

#noivciclosporinselfie

I reluctantly decided not to go ahead with launching a #selfiewithmyplatelets campaign, partly because I’m not sure anyone in the country has any money left after donating generously to various cancer charities as a result of the #nomakeupselfie campaign on Facebook. I expect you’ll have heard of it even if you’ve avoided the social network, but the short of it is that it inspired (or reminded) a lot of people to donate to cancer charities – I think Cancer Research alone received £8 million as a result.

I believe it started out as an effort to raise awareness for breast cancer, but some bright spark realised it would be even more worthwhile to add the fundraising aspect, too, and the breadth of its scope expanded to take in charities covering a far wider range of charities. I’m particularly glad about this, not just because my own cancer wasn’t in my breasts, but also because a lot of other cancers with worse survival rates already suffer from less awareness and research funds. The fact a catch-all charity such as Cancer Research benefited hugely is great.

When I posted about the importance of bone marrow donors, I was moved and thrilled that so many people signed up for registries as a result. I’m also overwhelmed by the amount of support we have, and can’t help but feel I should make the most of having so many people’s attention to bring some benefit to the charities I feel have been and will continue to be most important in our fight.

Once I’m in better shape, I’m keen to organise some sort of event or undertake something challenging to raise funds for these charities, in order to give something back. But if my situation has inspired you to make a donation already, these are the charities I would ask you to seriously consider…

The Full Circle Fund
I’ve talked about this before, since when I have enjoyed the relaxation and feelings of wellbeing provided by reflexology and massages. The charity was launched by Suzie, who was working on the Ruth Myles Unit during my first round of fighting leukaemia – at the time we talked a lot about the importance of looking beyond the clinical issues to address the quality of life of patients undergoing treatment for cancer. It’s a small charity, but has grown a lot since then, and I feel a strong personal link. Any extra funds will help them provide wonderful complementary therapies to more patients.

Anthony Nolan
I’ve been extremely lucky to have a fabulous donor (10/10 match, same blood type, etc) for my stem cell transplant. In fact, Anthony Nolan found two other equally good matches, which is amazing. Many others are not so lucky, though, and there are still many people for whom a match cannot be found. Anthony Nolan puts its funds towards getting more people on their register, which enables more patients to undergo life-saving transplants. They recently linked to my blog from their Patients and Family Facebook page, too – hopefully it might help others facing a transplant.

Leukaemia & Lymphoma Research
You may have seen fundraisers running marathons and the suchlike dressed as bananas, which in itself is a great commendation. When Harriet wanted to raise money for a relevant charity the first time I was ill, I suggested LLR on the basis that their research was the most likely to directly help me fight the leukaemia. This time around, having relapsed, I was very grateful for the progress made in leukaemia treatment since then, when the innovative MARALL trial using antibodies got me into remission. As researchers find new treatments and improve current approaches, survival rates will increase.

I would thoroughly approve of contributions to any of these causes!

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Ciclosporin: as welcome as jelly beans

Meanwhile, on Day +12 my ciclosporin dose has now shifted from IV to tablet form – apart from reducing the time I’m attached to a drip, it also means the doctors can check the levels (on Monday, Wednesday, Friday) through my line, rather than having to jab me in the arm. Unfortunately my veins are not what they used to be, so it’s a relief that my arm will no longer resemble a dart board…

Neutrophils are at 1.7, having fallen as expected after I stopped the G-CSF. They may continue to fall, but if they go under 1.0 they’ll give me more G-CSF. I’ll also get a first idea of the chimerism (% donor cells vs my original cells) in a couple of days’ time.

All in all, doctors are pleased, as am I. My energy levels are better than I was expecting, and were it not for the defibrotide I’d probably be going home in the next few days. Even so, I hopefully won’t have long to wait!

 

Day +10: Expectation management

New-trophils?

About a week ago, a clearly excited transplant fellow Dara poked his head around my door and told me, among other things, that the lady in the room three doors down from mine had engrafted on Day +10. A few days later, he told me she was going home.

On the one hand, it was great to hear of such success – it’s encouraging to know that when they talk about engraftment happening at some point between Day +10 and Day +16, the full range is actually possible. After all, you barely dare hope that your own engraftment will occur at the start of that, and doubt that many get there so soon; it’s good to get proof that’s it’s possible. It’s also just lovely to hear that fellow patients are doing well, of course.

On the other hand, the fact someone down the corridor managed to engraft so soon doesn’t really have any bearing on your own situation, and provoke an absurd feeling of competition. Then you might start getting overexcited about the possibility that you’ll be able to match your fellow patient, causing you to focus your attention on Day +10 as the target, rather than an undefined day between then and Day +16 – potentially morale-sapping if your day doesn’t come until nearer the end of the range. Or you might fear that the law of averages will ensure you don’t engraft before Day +16, just to keep in line with the stats.

Fortunately, though, and very excitingly, my engraftment was officially declared today, on Day +10, after I registered neutrophils for two days in a row. They’ll have to find someone else to balance the statistics… After my mouth felt a bit better yesterday and I generally felt fairly well in myself (bar a continuing sore throat), I wasn’t all that surprised to learn I had managed to reach a neutrophil level of 0.3, thanks to the new stem cells. There are good reasons why they don’t declare engraftment until the feat is repeated, though, so I kept quiet and hoped for a good result this morning. And there it was: 1.4!

The next step is to stop the G-CSF growth hormone at some point over the next couple of days, to see how successfully my counts hold up without the extra encouragement. Effectively, though, the presence of neutrophils means that the transplant was successful – though of course it needs careful management for quite a while yet. Thank you, donor! I probably won’t be able to go home for at least another 11 days, as I’m due to keep getting the defibrotide four times a day until Day +21, but even that doesn’t seem very far off now that we’ve reached such an important milestone.

So it’s been a very exciting day – topped off by Freddie’s arrival in the UK from Vancouver. I was, of course, secretly hoping that my stem cells would engraft so soon, but I was prepared for it to take longer.

Another chapter opens, but for now we’re going to enjoy the last moments of a wonderful Day +10…

Yep – they’re mine!

Day +2: Chauffeur-driven service

It’s probably my fault for being just too British and hesitant to kick up a fuss, but I often end up being wheeled down to scans etc in a chair, despite my continuing ability and desire to walk using my own two legs. The problem is, once a porter has made the effort to locate first a chair, then the Ruth Myles Unit, and finally my room, I never want him to feel his trip has been wasted, so I hop on and get wheeled down to the ground floor.

Following the scan, it usually takes ages for another (unnecessary) porter to come and wheel me back to my room, so I have in the past suggested to the receptionist that I walk up by myself… Unfortunately, they worry that they will be responsible for anything that may happen to me between their department and my ward – however much I protest that I will be fine. I could, of course, just abandon the chair and walk up anyway, but I wouldn’t want them to be unnecessarily concerned, or the poor porter to turn up to find me gone. Too much fuss.

This happened today when I went down for a chest x-ray – I’ve been coughing a little bit so the doctors were keen to check what might be to blame. Fortunately hospital business seemed quite quiet, so I was seen quickly, the porters were rapid and I didn’t get itchy feet, instead being rolled triumphantly back onto the ward not long after I’d been rolled out.

To my delight, there was a parcel sitting on my bed; to my surprise, I discovered one of the nurses was serious about needing to know what was inside, her concerns partly fuelled by how heavy it was. It made me wonder: what contraband did she consider I might have been trying to smuggle in? I’m on enough drugs already not to be interested in chemically messing with my body any further, and the same goes for alcohol… Perhaps there was a fear I might set up a black market on the ward – tricky when neutropaenic.

I’m still not quite neutropaenic, as it happens, though my numbers are falling again. Tomorrow I’ll be back on the G-CSF, which may keep my blood counts up briefly, but before long they should be down to zero. Naturally, Mariacristina and I made the most of the chance to get out of my room and enjoyed an enormous hot chocolate each at the M&S café.

Not illegal in hospital

The parcel turned out to be a fabulous collection of Firefly Tonics from my cousin Emma-Rose, which will provide a delicious alternative to my current staple of water and M&S juices. It’s always exciting to receive cards, letters and the occasional package while I’m confined to barracks, and my room is becoming more and more colourful: thank you everybody!

Meanwhile I’m feeling a bit more sleepy, although I still don’t know quite how much is due to a restless night and how much to the treatment. The weekend tends to be more relaxed on the ward, so hopefully I’ll get a lie-in or two – of sorts.

Onwards and, well downwards first for the neutrophils, but upwards in spirit!

 

Day +1: Post-transplant-party wanderings

Remnants of a great party

When I mentioned to the doctor this morning that I had been a bit slow in getting out of bed this morning, she said it was no surprise, as the empty bottle of bubbly (elderflower pressé), huge balloon behind my bed, party hats stuck to the wall and party streamers scattered across the room showed we’d had a good party the night before…

And – although it didn’t really continue too far into the evening – what a party it was! Although I felt nothing particular during the infusion, or afterwards, the psychological celebration of reaching such a huge and important milestone made it an incredibly special day. It was even more wonderful to have present not only senior sister Daphne, who was here when I first came in back in 2005, but also of course my father – who has been such an incredible support – and Mariacristina, who is sharing my journey every step of the way with unimaginable strength and love.

Apart from the elderflower bubbly hangover, all has been pretty good today. The G-CSF growth hormone I had last week combined with an expected spike from the infusion of new cells to leave me with a remarkable 3.0 neutrophils, so I made the most of the gaps between my IV drips to stretch my legs on a tour of the hospital, and to enjoy a Costa cappuccino. It might be those neutrophils keeping some of the side-effects at bay for now, but so far generally I’m feeling well.

Fishy business on my tour of the hospital

Admittedly this evening I’ve felt a bit more sleepy, but having woken up needing a wee (I’ve been getting a lot of fluids, and diuretics to make sure I get rid of them, too) a couple of times during the night outside of the usual interruptions for obs and IVs starting/finishing, I expect some of my tiredness is just due to needing some more sleep. There was the excitement of yesterday, too, though, and of course it’s quite likely that the treatment itself is starting to have a wearying effect. Naturally I was boosted by sharing supper with Mariacristina…

Doctors expect my neutrophils to be down this weekend, and that I may start feeling the effects of not having much of an immune system (there may be the remnants of mine, but the new cells won’t have engrafted yet) more some time in the middle of next week. Nothing’s for certain, though – so we’ll see what happens and, as ever, take it as it comes.

Roll on Day +2!

Time flies when you’re having… a transplant

Somehow we’ve reached Day -2 in my treatment plan, so my stem cell transplant is taking place very soon indeed. I’ve got through five days of Fludarabine without much to complain about – and was even allowed out to continue my and Mariacristina’s efforts to eat as much good food as possible in the shortest amount of time possible.

Doctor’s orders, of course: it’s good for me to put on weight pre-transplant, as I’m likely to lose a lot of it afterwards, when my appetite will be all over the place. My growing belly hasn’t gone unnoticed by the nurses either, one of whom suggests I now look more like my brother (it would be rude to say which one).

The time out of hospital over the weekend was glorious in itself, but even more so because it was unexpected. Apart from being neutropaenic when I was admitted, I also had to contend with four doses of defibrotide a day, each keeping me tied to the drip stand for two hours, as well as a shorter infusion of Fludarabine. However, a couple of jabs of the growth hormone G-CSF pushed my neutrophils up, while careful management of IV timings left a window on Saturday and Sunday afternoons for me to escape.

I may have only been in hospital a few days, but upon arriving in Streatham (where else would anyone want to go in such a situation?) I was amazed by the smells, the sounds and the colours. I suppose that even before being admitted, I was avoiding busy places and big crowds, but above all I think it was the contrast between the (relative) calm of my hospital room and the vivacity of Streatham High Road. It felt like being in a cartoon – my senses were super-powered and everything I saw or smelt seemed exaggerated. I loved it.

I also loved revisiting our favourite Italian restaurants in London, which by lucky chance both happen to be in Streatham: Bravi Ragazzi and Addommé – it was no doubt our visit to the latter that prompted a visit from the Italian ambassador later that day, eager to tread in the footsteps of such connoisseurs. We also saw our lovely ex-lodgers Matteo and Zuzana for a delightful coffee, and they gave us an umbrella – happy days!

Fortunately I can keep in touch with nephews, niece and siblings by bananaphone

So that was bonus time out of the hospital before facing the big guns today and tomorrow – melphalan and campath – and the infusion of the new stem cells on Wednesday. I’ve just been given a huge bag of saline to flush my system before receiving the melphalan; as a result I’ve been dashing regularly to the loo…

It feels as though now we’re really getting started, after finishing the relatively tolerable Fludarabine and moving onto the hard-hitters. And it’s only two days until the actual transplant – a big moment if ever there was one.

Here we go!

The marvels of medicine (but still no neutrophils)

Today, my doctors inform me that my neutrophils are still 0.0, the infection indicators have reached a ‘normal’ level (but are still apparent), my haemoglobin is 100 (normal is 130-180) and my platelets are 32 (normal is 150-450). White blood cells are at 0.3 (normal is 4-11) and lymphocytes are the only white blood cells to show themselves, at 0.3 (normal is 1-4).

It is astonishing how they know this and are able to make potentially life-or-death decisions on such information. They know when I will need to have a blood transfusion and they’ll be ready to order platelets when that reaches a dangerously low level. In both cases, they know what type blood they need, where to find it and the fact they need to be irradiated. They can spot an infection from several different approaches and throw an effective antibiotic in the right direction. They know at what point my neutrophils are able to fight the fight themselves, and they know at what level of remission I need to be before transplant to give me the best chance.

Medicine is complicated to begin with, and haematology is a particularly complex area. I find it difficult to get my head around just how much we know about my leukaemia and its treatment, and am in awe of the people who over the years and centuries have worked these things out. My doctors may not be able to tell me exactly when my neutrophils are going to come up, but they’ll know what to do once they do. It’s astounding to think that we can even contemplate the possibility of a diagnosis such as leukaemia – even the very diagnosis is amazing.

And then – ALL is just one type of leukaemia; leukaemia is just one type of blood cancer; blood cancers are just one type of cancer; cancer is one of so many diseases to which the body is prone. The sheer weight of medical knowledge is leaving me flabbergasted today, making me feel humble and grateful that I even have a chance of getting through this.

As I continue to wait, there may be some positive signs that my neutrophils will come up soon. My platelets haven’t plummeted since my last transfusion, which is what they would usually do, and my haemoglobin seems to be staying up relatively well. Meanwhile, the occasional painful niggle I’ve had seems to be healing rapidly, so there must be something in my body willing to fight infection – the markers for which have almost vanished.

Until those neutrophils come up, though, it’s a case of sitting back and wondering at the marvels of medicine.

Wipeout

Squeeeeeeze…

Well, that was quick. A mere three days ago, I wasn’t even neutropaenic. Now I have 0.0 neutrophils (neutropaenic is below 1.0), and a lack of white blood cells to match (0.1, compared to a normal range of 4-11). Platelets are way down, too, at 12 (normal is 150-450). All to be expected if you pump your blood full of super-aggressive chemicals!

What surprised me is that my haemoglobin (Hb) count is at 90 (normal 130 to 180); I’m feeling very weary today and assumed it would be lower – although of course 90 is already more than enough to have ruled out my swinging from the bedside lamp like a jungle VIP. There’s not much jungle, either: my physical world has now shrunk to the limits of my room, although as a special treat I sometimes go on a trip to the bathroom.

Just in case the heavy-duty ultra-intensity super-chemo is not enough, I also had the power of the bumps – Harriet’s and Lucy’s growing babies – to try to squeeze out as many lymphoblasts yesterday… That’s probably the real reason why my counts are low. Lucy was here with her sister (and of course my fellow cousin) Rosie, and it was delightful to see them both.

I’m pleased I’ve managed to keep my brain awake long enough for this post, but my luxury four-poster continues to beckon and I reckon it might be time for another nap… Hell, why not – it’s the weekend!

Blood count: the slide begins

The count: a career in blood analysis beckons

Who better to introduce a post about blood counts than everybody’s favourite counting count, Count von Count? Unfortunately we might end up having to leave him behind, though, as I’m not sure he ever got as far as decimals…

As you probably already know, the good news is that I’ve now finished this protocol and the chemo involved with it – for someone whose previous experience of chemo was dragged out over long periods, it seems a little strange to come to the end so soon. Not that I’m complaining.

Now, however, the slide in my blood counts (which had already started) will begin to take me into the charmingly named but generally not-very-charming world of neutropaenia.

Neutrophils
This is where my neutrophils (which usually make up most of the white blood cell count and are a vital part of the natural immune system) are below 1.0 (x10 to the power of 9, or something big like that, per litre) – normal levels are between 2.0 and 7.5. Currently they’re at 1.1, so although I’m not neutropaenic yet, I will be soon.

In fact, part of the reason Dr Willis thought something might be up before bringing me in was that my neutrophils were around 1.8/1.9. This may well have been because of the lymphoblasts (the baddies: immature white cells released into the bloodstream before they can be useful for anything; a bit like Cambridge graduates) taking the place of the neutrophils in my blood.

White blood cells
The general white blood cell count is another level we look at, because when there are lots of lymphoblasts filling up my blood it goes up, and when there aren’t so many it goes down (and when they’re only halfway up, it is neither up nor down?). The neutrophil count is of course closely linked to the white cell count. I’m not sure what mine is at the moment, but the G-CSF will have been pushing it up while the chemo will have been pushing it down.

Haemoglobin
I mentioned this in reference to getting a blood transfusion, and energy; apparently today it is around 93g per litre (some say 9.3g per 100ml). Normal levels for a man are 130-180, so you can see why I’m not necessarily bouncing off the walls. Haemoglobin carries oxygen around the body, so as this falls, I expect I’ll be having a few more blood transfusions…

Platelets
The other number the doctors will be paying particular attention to is the platelets level; platelets help clot the blood, so when their level is low, bleeding and bruising can be very dangerous. Again I’m not sure what level I’m at on this front (thank God I’m not a journalist – I’d be hopeless).

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So it’s great that the chemo has finished, but as it continues to spread its chemical payload, lowering my blood counts further, my day-to-day health and wellbeing will be hit (I say day-to-day, as that’s the best way to deal with these things). Out of the frying pan (mmmmm, bacon) and into the fire! Of course, lowering my white cell count is the natural consequence of the chemo as it aims to knock out the nasty little lymphoblasts filling up my blood. It doesn’t make it any nicer, though.

Meanwhile, Harriet has become the second of the original Norton clan to arrive after Tom came in on Sunday; she flew over from Malaysia with twins in her belly so she’ll have enough time to spend with me and get back to KL in time to give birth! Her next trip will be with two very little ones… Mariacristina’s time with me has been restricted by a sniffly nose, but I feel her with me all the time anyway and the wonders of technology mean nobody’s ever that far away.