No ordinary honeymoon – a gruelling way of fundraising for Myeloma UK

Today and tomorrow two very good friends of mine, James and Helena Smith are taking part in one heck of an adventure race in New Zealand.  This is the Speight’s Coast to Coast multi-sport race.   The Speight’s Coast to Coast traverses the South Island of New Zealand from Kumara Beach on the Tasman Sea to Sumner Beach on the Pacific Ocean.  Between them, as a team of two, they will cycle 140 kms (three stages of 55km, 15 km and 70 km), run 36 km (including a 33 km mountain stage that crosses the Southern Alps) and kayak 67kms of the grade two Waimakariri River through the Grand Canyon of New Zealand, the Waimakariri Gorge.

Speight's Coast to Coast

Other than the obviously gruelling nature of this undertaking, two things stand out for me about James and Helena doing this race.

Firstly, this is (part of) their honeymoon.  Where most people might head for a magical beach on their honeymoon, James and Helena have sort of chosen to do the same, but in their own particular style are doing so by cycling 140km, running across the Southern Alps and kayaking 67km of a pretty serious river.  Perhaps someone could reserve them a place with a pair of towels on the beach when they get there?

The second is that they are using the event to raise funds for Myeloma UK, because, well erm, of me and my diagnosis.  Wow, gosh, thank you so much guys.  There’s a whole bunch of emotions swirling round in my head – I’ve soon learnt that that’s something of a feature of a cancer diagnosis – in response to the news that you’re doing this.  Gratitude, mild embarrassment, love, awkwardness…  News like this is unfamilar territory for me, but it’s great to know that I’ve got such good friends supporting me and willing to go to such lengths to demonstrate it.  Very much looking forward to hearing all about it when you’re back.

JustGiving Home

So, dear readers, if you would like to sponsor James and Helena in support of Myeloma UK, please do so here.  I, and they, would be very grateful.

And if you’d like to follow how they are doing this weekend, I think you can do so here – they are entrants #720.

Pedal, run, paddle!  And then, please, relax a little for the rest of your honeymoon…


Loving the lenalidomide

Last week I had my regular clinic appointment at the end of my second cycle (month) of “consolidation” chemotherapy.  This being “consolidation” to seek to deepen the response already achieved by my hospital treatment earlier this year (high dose melphalan and stem cell transplant).  The particular chemical combination selected, as mentioned in my previous post, is Revlimid (aka lenalidomide) / cyclophosphamide / dexamethasone (“RCD”).

So far I have to say I’m loving the lenalidomide.  Most important of course is the effect it’s having on the disease, and the initial results look quite promising.  It takes a while for the blood test (assay) to be done to measure the level of “free light chains” in my blood, these being one of the key indicators of the disease that the treatment is tackling, and at the end of this second cycle the results from the end of the first cycle were available (from both Southampton and from the NAC in London) and both showed a significant drop in the free light chain level (Southampton of about 850mg/l -> 450mg/l and London of about 1800mg/l -> 600mg/l).  The difference in absolute values between the two shows how lab / assay / calibration dependent the tests are, but the overall message is good.  Hopefully that sharp downward trend can continue.

But the other good thing about the lenalidomide is that I don’t seem to be suffering from any side-effects in taking it.  Best of all is the complete absence of the strong (in the doses I was taking) sedative effect of thalidomide, which manifested itself as a fuggy brain in the mornings (the thalidomide hangover) which tended to hang around for a while in the day too.  I haven’t noticed any peripheral neuropathy (finger or toe numbness) either and I’m watching out for that pretty carefully as the thalidomide treatment has unfortunately left me with a bit of residual numbness in my toes, which is bearable but I wouldn’t want it to get worse.

So in fact far and away the most noticable effect of this RCD treatment is the dexamethasone “boost” (and lack of sleep) that I’ve mentioned several times before.  Mind you, even that isn’t such a pain in this treatment, as my “dex days” have landed on a Thursday and Friday, so just as I’m getting to the end of the working week I get a little pick-me-up which I’ve found quite productivity-enhancing!  I rather surprised one guy I was working with  recently by discussing some material on a Thursday that I had to then turn into a long written document, which was done by Friday morning.  I’d been up half the night doing it of course, but I was awake and my brain was buzzing, so it made sense to just crack on with it!

I’m a dreadful blogger (which is good news in a way)

It has, I realise, been an awfully long time since I posted an update.  Apologies to anyone who’s been wanting an update but perhaps hasn’t wanted to ask more directly.  Double apologies if the radio silence was a cause of concern for anyone.

In fact the reality is that no news has certainly been (almost entirely) good news in this instance.  Since returning to work in August after recovering from my hospital stay (for an autologous stem cell transplant) I rapidly returned to full strength and activity.  This has combined with the double whammy of my particular workload having gone very busy in the last few months, combined with the fact that Andrea (wife) is in the final throes of getting a thesis written, which has upped my share of the parental care of Felix (son, age 3, bouncy).  Non-essentials have slipped off the radar a little of late.

I’ll give a brief overall summary here, but I think I’ll also back-date a few more detailed posts giving in particular more medical details, such that the information is there for the record.  If you only read this blog in its website hosted version, you’ll not really notice (apart from a few unread “previous” posts appearing if you’re a regular reader).  If you read this by email, the ordering might seem a little strange.

So, as I said I went back to work in August.  In fact I went back part-time for a week starting on Monday 29th July (41 days after discharge from hospital), found the part-time-ness frustrating and unnecessary and the following week was full-time.  I still eased myself in pretty gently – I’m fortunate that I have a desk-based job (it must be so tough for more manually employed labourers to go through what I’ve been through) and in particular my work colleagues have been fabulously supportive.

My “100 days since transplant” fell in September, and on the 1st of October (4 months after transplant) I had a review meeting with the consultant.  Just previously I’d has another bone marrow biopsy (BMB) done (in the brand spanking new Haematology Day Care wing of Southampton General) as well as a full bank of blood tests, including the all-important (for me) “free light chain” levels.  In overall summary the results showed that the hospital treatment had had a solid effect on my disease, bringing down both the unwanted bit in the BMB and the free light chain levels.  Nevertheless both were still at levels that warranted some more treatment.

A range of options for further treatment were discussed (see another more detailed post for that), with the decision being to start on a series of cycles of “consolidation” chemo, using the combination Revlimid / cyclophosphamide / dexamethasone (“RCD”).  Revlimid (aka lenalidomide) is a derivative of thalidomide and works in a similar way, but is less likely to cause peripheral neuropathy (numb extremities).  That was one reason to try the Revlimid this time instead of more thalidomide, as I do have some numbness in my toes, which the thalidomide I was taking previously is probably responsible for.

First cycle of RCD started on 31st October, and I’ve just started cycle two on 28th November.  It’s going very well (at least in terms of tolerance – no results are available yet).  The great feature of the Revlimid (lenalidomide) is that it’s not a sedative like the thalidomide, so I’m not getting knocked out cold every evening and waking up with a thalidomide “hangover”.  In fact the only thing I notice from popping the pills is the usual steroid effect, but in my case for these cycles, that has landed on Thursdays and Fridays, which actually is quite a nice little boost towards the end of the week…

So, more news to come when results are available, but for now I’ll keep popping the pills, burning the candle at both ends (especially on a Thursday and Friday) and juggling that with entertaining Felix.  This morning we’re going climbing at a local climbing wall with friends.  His first time ever and my first time back in far too long.  Should be fun!

A long overdue update

It’s been much too long since I posted an update on my blog, but I’m sure you’ve all been off enjoying your summer holidays, so hopefully I’m just in time now that you’re back.

I’m now back at work, having tried a week part-time (mornings only) and then upgraded to full-time.  In fact I found the week of just mornings a bit frustrating, as I would spend the mornings sorting things out, dealing with emails, talking to colleagues and so on, and just as I’d cleared my desk to be able to get into something substantial, it was time to go home.

Before that the time spent at home after I came out of hospital was a little frustrating, though not unpleasant.  I think I hadn’t really prepared myself for how much recovery time at home there might be after I was discharged.  At first after I came out I was sleeping quite a lot – it was quite common to have a couple of hours sleep in the afternoon.  Later though, once I didn’t really need the naps anymore, but still didn’t have the usual energy and drive, it was quite frustrating to be at home surrounded by things that I could in principle be getting on with, but didn’t.

On Tuesday last week I had another clinic appointment at Southampton General.  I was pleased with this one for a couple of reasons.  Firstly, my neutrophil count has leapt up, now being 4.1(!) which is properly back into the “normal” range.  The consultant was happy now to leave my next appointment until early October.  This will be after my “100 days” assessment – the outcome of the high dose treatment and stem cell rescue is assessed 100 days after I got my stem cells back.  That will be another bone marrow biopsy and a bunch of blood tests in late September.

So it’s 9 weeks today since I was discharged after my “high dose” chemo.  The first six of those were spent at home, and as I mentioned I’ve now been back at work for three weeks.  I generally feel fairly normal again now.  I couple of weeks ago my beard starting properly growing again, and it looks like the hair on my head is starting to grow again (at the moment, I’ve got a full, but very very short head of hair).  And yesterday I went for my first run since before I went into hospital (i.e. since mid May).  I was pleased to be able to do 5km in just over 30 minutes.  My legs ache like nobody’s business now though…

Good to be home (and Wimbledon’s on the TV)

I’ve been a little tardy in updating the blog since I was discharged from Southampton General Hospital a week last Tuesday afternoon (18th June).  I’ve generally had a very laid back time since then, resting most of the time and having a lot of naps.

The discharge from hospital took a few steps, including having another infusion of platelets to bring my count up, and having had my central line removed. Although it was great to have the central line fitted whilst I was an in-patient (no needles required to take blood samples or administer drugs), it’s nice to be free of it now.

Immediately after discharge I was first at my parents’ house for a few days (because there had been a slight tummy bug at home and I was advised to leave it a couple of days) before coming home on Saturday.  Just getting home was great in itself, but the best part of all was seeing Felix, my nearly-3-yr old son again, whom I haven’t seen since I went into hospital.  He played his part beautifully – I was aware of the possibility for him to barely bat an eyelid when he saw me – but instead I got a massive hug which was so tight it squeezed a few tears out of me.

I also had my first follow-up appointment at the hospital this Tuesday (25th June).  Generally all good, although amongst the blood counts the neutrophil count is still hanging quite low (at 0.6), so I need to be careful about infection for a while longer.  Next clinic appointment is in two weeks – hopefully it’ll have picked up significantly by then.

So for now just having a quiet time at home.  My energy levels seem to fluctuate quite a bit – I’ve had some days where I’ve had naps in both the morning and the afternoon, whilst on other days I’ve not felt the need to sleep at all.  Slow and steady I guess, and in the meantime there’s always Wimbledon on the TV…

OK now they’re just messing with me – I can go home today!

So as far as I can understand what happened, the consultant (Le Grand Fromage) overruled the Registrar and has said that I can go home today after all!  The blood counts are still a little low today (neutrophils 0.6 and platelets 34), but the plan is to give me another infusion of platelets and another of the bone marrow boosting GCSF injections to boost the counts a bit.  Apparently they are then confident enough that I’ll be up in, and stay in, the safe region.

Should be having the platelets in and my central line taken out this afternoon, and then I’m good to go!  Apologies for the yes, no, yes roll-out of announcements –  I’m just delighted to be going home today after all!

Not quite home yet – small delay

In the event it turns out that I’m not going to be going home today unfortunately.  Yesterday my neutrophil count had dropped back to a level at which they wouldn’t be happy to discharge me (0.6).  In fact a drop in the count was expected to some degree, because all last week I was having the bone-marrow boosting GCSF injections, but Friday was the last one.  So now we’re seeing the unaided performance of my bone marrow.  The blood counts should start coming up quite soon, but until they do I can’t be discharged.  So perhaps Thursday to go home?  Starting to get a hint of cabin fever stuck in this room now, but it’s bearable for a few more days yet…