Happy New Year from Helga!

My dear blog-readers,image

It’s been a very long time since I last wrote a post. What can I say? The dog ate my homework. Today is Day +226 since my transpant, and as it’s the last day of January I think it’s still just about acceptable to wish you all a very happy start to 2015. I’ve missed all the more significant and timely days (Day +100, Christmas, New Year, Day +200, and more recently the one-year anniversary of my blog, ie Helga the Great’s first birthday!) It would be frankly impossible to sum up all the intervening moments, or tell you how I’ll be feeling tomorrow or next week or whenever I next see you. The short version is that I’m well, and I’m generally busy living rather than blog-writing. However, I do realise that people further away may be wondering (and indeed worrying) how I am, so here is a very short post to set your minds at ease. I’m about to head out to see friends and a film (Whiplash) and I’m running characteristically late, so for now I’ll leave it with a few photos.

Firstly, I was very happy to spend the last few days of September walking in Spain, on the annual leg of the ‘pilgrimage’ with the world’s most fun people. I walked about 80km (50 miles) in 4 days. I joined halfway through the week, so I flew into Bilbao (and saw the Guggenheim) and then met the gang in Pamplona. I carried my bag for the first day but after that was very happy that a kind fellow pilgrim took it off my hands. We ended in Logrono, which turned out to be a crazy party city. So, somewhat unbelievably, I spent Day +100 (a milestone for myeloma patients) not only walking 20k but partying till 5am! Somehow we all still made it to the airport bus at 11am. In your face myeloma…

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Leaps and Bounds

Today is Day 68 after my stem cell transplant. I had all sorts of good intentions about writing a blog around Day 40 (Forty Days and Forty Nights)… missed that… then Day 50… missed that… and indeed Day 60. Time flies when you’re having fun – and I have been, I’m glad to report. I’ve come on leaps and bounds since I last wrote – to the extent that in many ways I’m back to normal, and am surprised when other people are surprised by that. So it is well past time to write that blog, and bring the picture up to date a little. Besides, it’s raining in London. The sky is unrelentingly grey. After a glorious few months of record-breaking heat (by British standards at least!) and lovely sunshine, the weather forecast this week looked like this:

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So it’s a good day to stay indoors and write. Except that, I’m rather smug to report, I’ve just been out in the park with my personal trainer, wearing my brand new luridly pink trainers and Team Viking t-shirt and various other new items of sportswear courtesy of the Fit FUNd I wrote about after my birthday. I don’t think any of the exercises I did put me in contention for the next Olympics, but bearing in mind I could barely walk around my flat less than two months ago it’s all pretty seminal in my terms. I also always find that I feel much better afterwards in mood and energy levels. Alongside the garish gear my first major Fit FUNd investment is in a 4-week block of two sessions per week with PK the trainer, along with a commitment on my side to do another cardio session a week, and give up booze, white carbs and sugar. I’m interested to see the end result! And here to brighten up a grey London evening are my new and old trainers: sports footwear seems to have got a lot brighter in the last 8 years…

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If that all sounds a little too Fit and not quite enough FUN, then rest assured that there’s plenty of generously given dosh left for that too. I’m particularly keen on doing some sort of spa break in due course, but will save that till I’m actually allowed to wallow in a jacuzzi again. Swimming is sadly banned for me at the moment by my hospital. I’ve come across other myeloma patients able to swim at this stage post-transplant, so I did try asking twice, in the hope of a different answer. Having got a very clear ‘No, ask us again after three months’ I’ve decided not to disobey orders. The problem seems to be all the nasty bacteria one might find when hanging out in a pool of warm water alongside the Great Unwashed of Clapham Common. I can kind of see their point, when you think about it like that. Although all my full blood count levels are normal, there are more subtle elements of the immune system that aren’t up to speed yet when you start digging around a bit deeper. I don’t have enough lymphocytes. I have no idea what lymphocytes are, but tend to trust my doctors and their vastly superior knowledge which seems to have done pretty well for me so far.

Having said that, I did swim twice in the sea in Cornwall a week ago! (I decided not to ask the doctors about that, in case they said no. Surely the sea is much colder and Cornish people much cleaner? In any case, I survived). Aside from that lovely mini-break, other highlights since my last post have included catching up with extended family at my cousin’s wedding, my uncle’s 70th and (very sadly) my Grandma’s funeral last week. I can’t even begin to do justice to describing the 91 years of Verona the Great and the influence she had on her Viking tribe of 5 children, 12 grand-children, 18 great-grandchildren and counting. Suffice to say that, as with my Grandpa on my mum’s side, she is gone but not forgotten: both are inspirations to me and all of us descendants for dealing with all sorts of situations in life – whether it’s to grit your teeth and get through tough times (like they both had to) or to say ‘Bubbles to that!’ and have a laugh about it all.

On the cultural side of life, I’ve enjoyed a fantastic Prom on Friday and some great films at the open air cinema in front of Battersea Power Station. I’m still fairly hit and miss about evening events (my energy levels are fine at times but there’s still a limit to how much I can do in one day or week and the inevitable slumps in between busier times, all a little unpredictable) but starting with the ones where you’re sitting down seems to be a good call! The Mindless TV: Good Books ratio has also been improving: I think when I last wrote I hadn’t even been able to start reading but have now finished my third book and started my fourth, which again feels like quite a milestone in the context. (The Secret History/ A Confederacy of Dunces/ Capital by John Lanchester/ Stoner – for anyone interested!)

On the medical side, I’m now down to hospital check-in visits every two weeks, and suspect that will be down to four weeks after I go tomorrow as there isn’t really anything to report. Things are returning to the ‘new normal’ of the past two years. In particular, now that my bone marrow is less battered I’ve re-started my Zometa infusion which I have once a month on a 15-minute drip; this is something which helps deal with the bone damage myeloma can cause. Normally your bone is constantly remodelling itself, with osteoblasts building it and osteoclasts destroying it. With myeloma, the balance is messed up so that more bone is being destroyed (hence the bone lesions, fractures etc common in myeloma patients). So, even while in remission, most myeloma patients will be on some sort of bisphosponate (Zometa or Pamidronate or similar) to deal with previous damage or help prevent new damage. There also seems to be evidence that these help extend overall survival, so it’s generally A Good Thing – although annoying of course to have to go to hospital as often as monthly even when you’re otherwise free from treatment. My hospital used to use Pamidronate which took 90 minutes to infuse, plus a flush, which meant a couple of hours every month feeling like a cancer patient: so Zometa is a definite improvement being quicker. While I’m there each month I give blood and urine samples for my ongoing monitoring, and every two months I see my consultant. That’s the routine I’ll be returning to in around 6 weeks or so, after one more bone marrow biopsy and the transplant team handing me back to my usual consultant.

I’ve been signed off as unfit work till October 15th (three months after transplant seems to be the rule of thumb) and although I may go back a week or two earlier, I’m resisting any urge to go back during September – and yes, honestly, there is an urge to resist! In some ways it’s quite hard having no routine and structure, a succession of free days, not very much energy to do all the things you’d like to do and a horrible cancer to think about. So psychologically it’s actually appealing at those times when I’m feeling more myself just to hop back into the rat race with a phased return to work – plus of course the irrational guilty conscience thinking when I’m feeling good: ‘I could probably do some work if I tried right this minute, doesn’t that mean I’m skiving?’. On the other hand, I do realise that although I’m feeling ‘better’ this is very much a relative concept, and work is stressful and tiring in ways that I’m forgetting right now. As with any case of the flu it’s all too easy to go back to work that bit too early and find you’re not as ready as you thought you were – and you’re not doing anyone any favours by showing up and flaking out. Hence my month of focusing on building my strength back up – and the helpfulness of the training sessions also as adding some structure midweek.

So, seen from a certain point of view the (to me slightly hilarious) upshot of all that – and the key point to convey in this blog for those I’m out of touch with – is that I’m no longer in Invalid Mode and for the next 4 weeks am very much in Lady Who Lunches Mode: whiling away my hours with a bit of shopping on the King’s Road in between sessions with my personal trainer, trying to catch perhaps a couple of plays, concerts, exhibitions, actually managing to read my book for book group on time. I guess I should make the most of it while I can! After all, I bloody well deserve it.

Anyone who wants to join me is more than welcome… Fun stuff at weekends and some evenings is definitely included in that.

Yours, leaping and bounding,

Helga the Great x

 

 

Home Sweet Home

Re-posting as I didn’t get an email version, not sure if anyone else did…

Myeloma, My Arse!

This is a very overdue blog: you’ll be glad to know I am no longer incarcerated in Tooting and have been released back into the wild. I was discharged from hospital on Saturday 5th July, AKA Day +16 in terms of my transplant. Pretty good going, although also fairly typical from what I’ve read of other patients: I think my consultant gives the 4-week figure so that people aren’t disappointed! My escape was initially looking like Friday 4th, but ended up being delayed due to a Resurgence of Puking on the Thursday/Friday. It was then slightly delayed on the Saturday afternoon as I (for the second time only) needed a transfusion of platelets, and the first bag sent up were the Wrong Kind of Platelets (something like they were CMV Random and needed to be CMV negative…). This made me think of British Rail, and the wrong kind of leaves…

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Home Sweet Home

This is a very overdue blog: you’ll be glad to know I am no longer incarcerated in Tooting and have been released back into the wild. I was discharged from hospital on Saturday 5th July, AKA Day +16 in terms of my transplant. Pretty good going, although also fairly typical from what I’ve read of other patients: I think my consultant gives the 4-week figure so that people aren’t disappointed! My escape was initially looking like Friday 4th, but ended up being delayed due to a Resurgence of Puking on the Thursday/Friday. It was then slightly delayed on the Saturday afternoon as I (for the second time only) needed a transfusion of platelets, and the first bag sent up were the Wrong Kind of Platelets (something like they were CMV Random and needed to be CMV negative…). This made me think of British Rail, and the wrong kind of leaves on the line…. So at around about 5pm I was finally in a car and seeing the wider world whizzing by for the first time in in two and a half weeks.

I spent the weekend being fed and looked after in the Viking Homestead chez Harald and Hildegard in Bucks. Then, after going back to Tooting for my Monday hospital check-up, I headed home to Battersea. After the non-stop intrusions of a hospital environment (vital and well-meant as they were), it was bliss to have my own personal space again.

As before, I’m not going to attempt to give a run-down of the medical side of things, side effects and so forth. Luckily there are much more diligent myeloma bloggers out there who have done a thorough job of that. But the overall trend is that I’m getting my energy back and slowly recovering as my immune system rebuilds itself. The first week was pretty tough, but since Saturday I’ve felt a bit more like myself and been able to get out of my flat a bit which helps.

It’s great to have the transplant behind me. I’ve realised recently that lots of people assume I’m still having treatment, so this blog is a good chance to clarify that my hospital stint was the end of it for now (and let’s hope for a good few years): it’s really just one massive blast of chemo (which I had on 18th June) and then about three months of getting over the massive chemical fallout. Think of me a bit like Chernobyl, or Fukushima…. The irony is that (as everyone tells me!) I look well, rather than like some sort of nuclear wasteland. Other than the baldness and a few kilograms of excess weight from the earlier steroids which is still mainly hanging around, I probably look pretty much ‘normal’. If we could see what is going on at cellular level, I guess it would look pretty different: a lot of damage and a lot of energy being expended by various bits of my immune system scurrying around trying to rebuild itself. Currently I take various supportive drugs: two anti-sickness which I’m gradually coming off, and one other which I’ll be able to stop once my platelets are up enough; then three more which I’ll keep taking for a year (antibiotic/ antifungal/ antiviral) which are to help prevent me coming down with anything nasty while my immune system isn’t great.

It’s very frustrating feeling so tired and indescribably ‘urgh’ much of the time. I was a bit sceptical that it could really take three months to recover, but I can see now how it might. I do have Good Days of feeling much more myself and relatively energetic, but they’re often followed by Wipe Out Days of barely feeling awake and unable to do anything at all. I’m also now well enough to be bored, which is, well, boring.

Still, it’s definitely worth it, and I just have to put up with it. As a family friend who is a doctor said to me when I was first diagnosed: there is a reason why patients are called patient. There is a lot of sitting around waiting: currently in my twice-weekly hospital check-ups, waiting for my bloods to be taken and for my doctorly chat; waiting for those to go down to once weekly and then once every two weeks; waiting for my hair to start growing back; waiting to be able to engage in normal life like a normal person doing normal things rather than missing out on it all while I scroll through daytime TV in a vain search for anything remotely tolerable; waiting to have the energy to read a book, which would be much more satisfying.

But each day down is another day closer: today is Day +27. Day +100 is a good benchmark for when I might be feeling pretty well over the worst of it. July is going to be relatively a write-off, but hopefully during August I’ll be able to enjoy some nice summer things (I’m especially looking forward to massive family get-togethers on both sides of my Viking clan, for a 60th, a 70th and a wedding) and September even more so. Then it’ll be time to wake up my brain with a return to work, and presumably invest in some nice dresses as I’m lucky enough to have been invited to three weddings and two hen dos in October! Definitely an incentive to be back on full form.

So there you have it! I’m not sure how much I’ll be blogging, as at this point when I do have any ‘oomph’ I’m more inclined to spend it doing other things; and as I mentioned I’m finding it all very boring, which doesn’t make for fascinating reading. I’ve long meant to write one about exercise, which even has a title, and will probably be quite motivating for me to write, so watch out in due course for ‘The Battle of the Bulge’!

Meanwhile, company definitely helps: particularly the rare breed of people who can be free during the day mid-week and hang out with me. Early evenings are sometimes feasible. I find it really tiring answering questions still, and am utterly bored of my own life and especially all things and thoughts medical, so as before my top tip is to avoid the traditional opening gambit of ‘How are you?’ and all the related questions about how I’m feeling, whether I’m tired and what that feels like, how often I go to hospital, what’s happening medically, when my hair will grow back, what I’ve done for the past few days etc. Ideally come and witter away at me about your own life. I know it’s normally polite to make things a bit more two-way, but honestly you can bin that rule for now. As another blogger has pointed out, the bar for entertainment is pretty low: you only have to be more interesting than (in my case) Homes Under the Hammer…! On a good day let’s combine it with a walk around the park, as I’m keen to get more active little by little. Short notice is also good: other than hospital appointments, I probably won’t plan things much more than a week at a time, but take it little by little.

Finally, thanks so much to everyone who wrote and texted and emailed, sent cards or magazines or anything else: every single contact really helped (and helps) to cheer me up, however big or small. I’m sorry that the aforementioned lack of ‘oomph’ means I can’t always acknowledge that directly, but hopefully a blanket blog ‘thank you’ goes a little way to making up for that. And as I haven’t updated you of my location, rest assured that things sent to Tooting and Beaconsfield do still wing their way to me!

Yours, (im)patiently recuperating,

H x

 

0.2

Well, honestly. You wait weeks for a blog post, and then two come along at once! Isn’t that always the way?

I thought I’d write again to share today’s edition of Neutrophil News: they have reached 0.2! As Harald the Ruthless pointed out, this either means they are going up 0.1 a day or they are doubling. Let’s hope it’s the latter! To put the digits in some context: according to the Medical Dictionary of Wikipedia, normal range is 2.5 to 7.5. Below 1.0 is neutropenic and below 0.5 is severely neutropenic. So I’m not out of the woods yet, and all the fancy isolation stuff is not just for show at this point.

In terms of going home, the magic number is 1.0 although there’s a bit of leeway on that. It also needs to be accompanied by things like being able to eat, drink and what doctors call ‘mobilising’ (i.e getting out of bed and moving around a bit). I’d also need not to be on daily supportive hospital-based treatments like this lovely bag of platelets which I had to have today:

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With better lighting, you’d see that platelets look a bit like a pale orange juice. If you’re already a blood donor, you can also become a platelet donor: do look into it! If you’re not sure what platelets are, I can’t really help you much, other than to say that they are important in blood clotting: when you have low platelets, you bleed more easily. 

Mine were low, hence the bag of juice. It turns out that my neutrophils, measly as they sound, are artificially enhanced. They are boosted by the injections I’m given every day of GCSF, generally known as ‘growth factor’ (clearly one of the reasons I’ve been feeling like some kind of dystopian battery-farmed human!) The growth factor kicks the immune system a bit, hence the neutrophils being assisted – but some of the unassisted things like platelets are still too low and hence the transfusion.  

The other point of this photo is to demonstrate the sad fact that the room I’m in doesn’t have a view: those awful Venetian blinds are fixed inside the windows and there is seemingly no way of moving them. So I can’t even really tell what the weather is, let alone see anything interesting. Thanks so much for the offers of wide open green spaces – that’s exactly what I’ve been craving, not surprisingly. My ‘outdoorophils’ must be severely depleted: I’d estimate around -1000. I watched a great episode of Countryfile (no judgement, please!) sometime in the blur of the last week or so, all about the Tour de France coming to Yorkshire. As a result, I’m also specifically craving Yorkshire. So willing companions on Yorkshire mini-breaks in the next couple of months step forward! (But other places too, and beyond that timeline! I’m game.)

Yours, looking forward to a Brave New World,

Helga the Great

So Far, So Bad?

Greetings, blog-readers! It’s been a while. 

Today is Day +11 after my stem cell transplant. It’s getting close to a fortnight since I’ve been incarcerated in one room, with two slight exceptions: I had a room ‘upgrade’ after two days, and I went for an X-ray once.

Short of trying to describe everything (which I’m not going to), it’s a bit hard to know what to say. I arrived Tuesday 19th to the world’s tiniest room, and realised I wasn’t going to be taking up cat-swinging during my stay (hence the move as soon as a bigger one was free – not prompted by me but very welcome!) Wednesday consisted of a couple of lovely visits from friends and then the evening saw the  Commencement of Puking. From then on, it’s really all about puking. I also had some bright red newly-defrosted stem cells injected back into me, while puking, on Thursday. If I’d been feeling more with it, I’d have photographic evidence for you all, but as I don’t you could perhaps get (harrowing?) first-hand witness accounts from my parents. 

Fast-forward the next week or so to today, and I think finally I’m on an upward trend. My neutrophils (type of white blood cell) have been down at the magic 0 (i.e. immune system utterly wiped out) but yesterday morning they were 0.1, so hopefully this morning they were higher. The pain in my throat/gullet where skin cells have been wiped out by chemo (‘mucositis’) seems to be getting a bit better. I haven’t been sick for nearly three days now. I also haven’t (touch wood) had any fever spikes due to infection etc, which is one of the big risks when your immune system is down. So, although I was unlucky with the nausea/vomiting side of things, by now I think I could just about say ‘So far, so good’.

At times I feel a little bit like some sort of strange sci-fi cattle: every morning at 6am someone comes and bleeds me via the tubes dangling out of my chest, collecting multiple tubes to give the sort of numbers I mentioned above. I’m also weighed twice a day. Every four hours it’s ‘obs’ which I think is short for observations: blood pressure, temperature, oxygen saturation, pulse. The 10pm/ 2am/ 6am instances of those can be annoying, although by and large I just remain in a stupor. Several times a day someone brings in a pot of pills for me to guzzle down. The doctor visits once a day, with a ward round of massed consultants on Mondays and Fridays. Beyond the visits focused on me, there are a whole set of people on a rota who come in to change the jug of water, clean the bathroom and the room, change the bins, change my bedsheets, ask what I want to eat and deliver said meals (although eating hasn’t really featured much for me in the last fortnight), and so on. So despite being in one room, and doing nothing, it’s strangely busy.

The final news item is ‘Hair Today, Gone….’ not quite sure when. It’s falling out pretty rapidly now so within a week I expect I’ll be coot-like. By which I mean bald, although thinking about it coots aren’t bald, they just have white foreheads. And pretty feet. Here is a picture for you all of a slightly demented-looking coot:

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This coot is doing a runner. This will also be me, before too long. Who knows, it could also be within a week! Webbed toes crossed…

Yours, emerging from the fog,

Helga the Great 

The Countdown and the Lowdown

The Countdown

Only one full day to go before I go into hospital for my ‘mini-break’ on Tuesday. Strangely, although it’s a pretty horrible thing coming up, I’ve been happy to see that number of days get lower and lower. One feels much better than fifteen did. It’s a bit like counting down till exams: I’m looking forward to being out the other side. Waiting for such a big event is a bit stressful, and even though I’ve managed to do a few fun things in the last fortnight, it’s not like I can forget about the huge monster looming in front of me. There is also a lot to get ready, and not enough time to do everything, a bit like before going on holiday. Even though the destination isn’t glamorous (sorry Tooting!), there is also the pre-holidayesque activity of shopping and packing: which, unusually for me, I’ve started a couple of days in advance, rather than leaving it until the middle of the night before, and frantically trying to dry clothes in the morning while trying not to miss my flight…

Check-in time is 1230 on Tuesday. I don’t need a passport, and that isn’t the time when I can put my luggage onto a conveyor belt, but rather the time when someone will insert a plastic tube into my neck. Ugh.  Worse than Ryanair.

The Lowdown

I’ve had the full briefing now, and although I’ll spare you all the gory details (for now, at least), I know people are keen to know some of the more practical aspects, so here goes:

– Average stay is 4 weeks, but it could be a week more or less than that.  So 17th June until early/ mid-July.

– I’ll be in my own room, which is an isolation room with various fancy things to minimise infection risk, like extra filters in the air  vents in the ceiling and slightly higher air pressure so that it blows out at the doors and repels foul things from the outside world!

– Visitors are allowed: it’s not a big room, so not more than two at a time.  Mealtimes are protected  i.e. no visitors:  1230-1 and 5-6pm(!)  Essentially, I think afternoons will be best, and early evenings  when I’m up to it.

– No flowers, fruit or veg, or pretty much any food really.  I’ve got books but I guess newspapers or non-trashy magazines or nice-smelling  lotions and potions would be the kind of thing to put a smile on my face!

– No kids, sorry. No coming to visit if you’ve been around children with chicken pox, etc.

– Absolutely don’t come if you’re ill, or have anything catching, or even feeling a bit under the weather and might be coming down with something.

In practice, I may not want visitors for much of the time, but equally I might be feeling very bored and, well, isolated. At a rough guess I’ll feel more like having visitors in the first week and then towards the end of my stay.  But  who knows, it could be the opposite.

As it’s hard to predict I’ve decided it’s easier just to pencil people in on a sort of ‘visitor rota’ in advance and then cancel if I’m not feeling up to it. So let me know if you’re free and want to come, especially if you have the flexibility to do midweek daytimes.

Of course there is also the option of communicating with me via phone, Skype, texting, emailing, or the good old postal service! Irrespective of whether I’m well enough to indulge in any of the interactive versions of those, one-way communication from the outside world will always be welcome! Last time around I had a cork board in my room, and as you can imagine it was very cheering to end up looking at this:

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The hospital address is available online – I’ll be in the R*** M**** ward and if you use the A-Z ‘service finder’ for ‘haematological cancer’ on the hospital website you can find that name in full! Sorry to be cryptic but I’m more comfortable writing freely on here without feeling like this blog will come up if someone googles that ward! Email me if you can’t figure it out, or call the hospital!

What else? Tomorrow I’m going in for some blood tests and to get a month’s worth of one particular antibiotic via a nebuliser. On Tuesday I get the line and lots more antibiotics. Wednesday is Day -1 or High-Dose Melphalan Day i.e. a ginormous dose of chemo, which is the treatment, with lots of fluids. Thursday is Day 0 or Stem Cell Transplant Day, which is the ‘rescue’ from the chemo. Thereafter, it will be mainly a case of watching the World Cup and Wimbledon and enduring various nasty physical side effects (of the chemo, not the fact that I’ll be uncharacteristically watching lots of sport).

Yours, eagerly counting down to Zero,

Hx