"I was expecting a much bigger needle..."

Marcus came with us to the hospital today....thought we'd show him where Daddy gets tortured!! He seemed a little disillusioned and let down by the whole experience.....'I was expecting a much bigger needle'. No screaming or blood splattering on the walls...what kind of show are they running here!! Our good parenting techniques have clearly worked well, with copious amounts  of compassion and empathy on full display.

You know what.....he was great!! Important to recognise that this is the same boy who came up and put his arm around my shoulder the other day, coz he could see that I was a bit down...That meant alot....that meant an incredible amount!

That said, after coming to terms with the lack of gore, he did proceed to entertain himself trying to make Dad as uncomfortable as possible, experimenting on the potential for breaking human bones using only a firm mattress and electrical bed motors.


My consultant was very positive about my paraprotein levels. Having come in to see me, (and following the now customary golf lesson) he confirmed that progress was ahead of schedule and was very happy that I'm continuing to react well to treatment, not only in the reduced paraprotein levels, but with my vital blood counts holding up and manageable side effects. One more injection on Thursday, then thats cycle four ticked off!!

Sverige

It's been a while since my last post, so thought the least I could do was inform you that I'm still alive and kicking!

Having had a break from the chemo last week, we took the opportunity to spend a few days over with ‘me bruv’ and family in Sweden. So, with invalid travel insurance in my back pocket, we flew out to Gothenburg on Tuesday. It was great to see them all again, and we spent the week experiencing that perfect blend of relaxation, mixed with table tennis, sailing, fishing, baby crab massacring and Liseberg.

To add the final touches to an already fantastic week, family Hoban were very fortunate to get hold of tickets to the Olympic handball final, Sweden v France, on Sunday. What a superb day, and such a surprise and boost to be up in the Olympic Park on the last day of the Olympics. Having spent four years in Sweden following RIK (the Gothenburg handball team), I could even pretend to understood the rules!

Though it lacked the bikinis and shocking flesh exposure of the beach volleyball, it made up for it with excitement, drama, sweat (mine) and tears (Lens), the Swedish team narrowly missing out on gold by one goal...21-22.

                                   Spotted this famous couple in their baby grows!


In keeping with the Olympic theme, having got back home and turned on the TV to see the closing ceremony, there was Mo Farah appearing in an old episode of ' The Cube' (important to point out at this stage that I'm not a fan of the programme). Deciding to waste 20 minutes of my life watching how he got on, I now know that Mo Farah was the first person to 'beat the cube'. Sod the two Olympic gold medals he's just won, beating the cube is clearly the true measure of dedication and perseverance!!

Anyway, back on the chemo and steroids this week, and a return to my "menopausal" state, with the associated sleepless nights, hot flushes, weight gain etc. Still, with the continued support of my wife (she called me ‘Brownie’ last night, the name of Marcus’ hamster, I presume in honour of my gradual development of hamster cheeks), I know this treatment won’t result in any deep rooted psychological problems!!

And finally, hot off the press, I’ve just been given my paraprotein levels off the back of cycle three. Fab news, the level continues to fall and is now down to 12, exactly half the level I had at the start of all this. There is clearly a gradual ‘plateauing’ of my paraprotein level, but this is considered a normal reaction to induction treatment. Real positive news at the end of two great weeks!!

Rubbish Night

Well, what a rubbish night that was!! Struggled to sleep, so at 4:00am thought I'd put on the 'Olympics Tonight' programme recorded earlier....what a mistake!! Now, call me old fashioned, but I thought the whole idea of a highlights programme was to actually see the days highlights.....oh how wrong I was....soppy traditionalist clearly. 80% of the programme was spent in the studio with Gaby Logan having random chats with ex olympians (not that I mind our Gabs), the other 20% covered various slow motion, close up, randomly sequenced, reverse angle, fish bowl, sepia shots of the actual events. To top it all, every highlight was preceeded with our Gabs commenting 'we join the race in the later stages'.....yeh, when the result was already clear!! Just tell us the result next time and don't bother with any highlights....much quicker. Programme turned off at 4:30, eventually calmed down around 5:30am.

Oh well.....composure recovered, I'm now looking forward to 'joining the race in the later stages' of the mens 100 meters in tonights highlights programme!!

Beach Volleyball

Had my final injection of cycle 3 yesterday and now looking forward to ten days off treatment. My consultant popped in for a brief review and continues to be happy with the progress being made, with all my vital blood counts holding up well to the treatment. Next major milestone will be the paraprotein count at the start of cycle 4. We're hoping for a figure around 12 or below at that stage, representing half my level at the start of the chemotherapy. That would provide a positive indicator that the Velcade is continuing to reduce the myeloma cells, so figures crossed on that one.

So, if drugs and positive attitude can't get me below that level, the Russian ladies beach volleyball team stand a very good chance of doing the trick. I was very fortunate to be given two tickets for the beach volleyball from some good friends of mine (so, so appreciated), who thought a bit of bikini therapy might just tip the balance, and who was I to disagree with such logical, insightful thinking. What a great night it was, fantastic atmosphere, Benny Hill theme tune blasting out over the loud speakers (you wouldn't get that at the Velodrome), with the London skyline providing the perfect backdrop.

Now clearly I'm not going the lower the tone of this blog by including some cheap photos of exposed athletic flesh.......so here it goes:

.....but only the one......oh, and this one, on full zoom in case the above missed clarity (I was obviously trying to work out who the No.1 Russian player was...nothing more sinister).

....and to save the day and redress the balance, the USA mens team complete with goaties.

 and thigh!!

To add the final touches to my Olympic experience, I decided not to sit in traffic for 8 hours in an attempt to get to work and, having taken a days leave, took a walk into into Kingston to watch the mens time trails. Great atmosphere again, loads of people out in support, got to see Wiggo and Froome, no Benny Hill theme tunes, nor exposure of thigh, but many prominant veins on riders forearms was noted. Clearly they'd been doing a bit of preparation on the treadmill for this competition!!

Finally, I like to think this blog can also offer a bit of worldly advise. So, having just phoned some companies to get travel insurance quotes, here's a wise word from your Uncle Patrick. If you're thinking of going on holiday, do so before you decide to pick up a incurable cancer.....the premiums are a shock to the system and appear to cover the full list price of the aircraft, not just the flight!!

Eastbourne

Just returned from.....wait for it....wait for it....a night out in Eastbourne (you don't have to feel bad for me). Dropped Marcus and a friend off at at nearby multi activity centre for a week of canoeing, raft building, climbing, BMXing and everything else you could imagine, then stayed on in Eastbourne to 'mix it up' with the old folk and enjoy a bit Frank Sinatra.

Had an enjoyable Italian meal out last night, then went for a walk along the sea front. Len took this great mood picture from the beach.....pity the lanky twat in the brown trousers got in the way...oh yeh, that's me!!

After a night of listening to seagulls and a full English breakfast thrown in for goo measure, we played the tourists and experienced the delights of the pier (how that thing's still standing I do not know), then drove up to Beachy Head. Weather held up well, knees a little swollen, but now back home watching the Olympics and ready for tomorrow.

Kyprolis

Good news on the paraprotein front today. The count at the end of cycle two was 14 g/l, down from the previous level of 17 g/l at the end of cycle one, so all positive and heading in the right direction.

Len receives e-mails from Myeloma UK, and whilst we were up at the hospital she received one regarding a new drug, Carfilzomib (Kyprolis - you just couldn't make these names up!!), which has just been granted licensing and marketing approval by the US Food and Drug Administration (FDA) for the treatment of relapsed and refractory myeloma patients. Results from Phase II clinical studies indicated that Carfilzomib is more effective than Velcade, and associated with less severe side-effects, especially peripheral neuropathy.

It's really encouraging to see that, even for these rare forms of cancer, research continues and new treatments are becoming available. No doubt there is still some way to go before its approval for use in the UK, but we're not talking about ten years from now and I'm sure there will be significant developments with not only this drug, but others, over the next few years. What's most important however, is that this postive news gives me just another helping hand along my journey.

With all this ongoing research and new treatments becoming available, I've got to keep believing that the future looks bright and who knows, maybe one day, myeloma will be seen more as a chronic disease. Maybe....but it's good enough for me!!

....and with a night like this, it felt almost rude not to pop down for a quick shandy by the river. Just been out with a close friend for a good catch up on all that's been happening in both of our lives.....really good night! Now back at home and looking forward to a good nights sleep...until 2:30am when I'll probably be tapping Len on the shoulder and asking nurse for a cup of tea. Now would I do that??

http://www.myeloma.org.uk/about-muk/news/myeloma-news/carfilzomib-kyprolis-approved-by-fda-for-use-in-the-united-state/#.UBEN4K_Okmw.facebook

San Miguel

Never has a pint of San Miguel tasted so good. It’s been a stable end to my rest week, and with Marcus at a sleep over on Saturday night, we decided to go out for a meal. Remembering having read in a medical journal somewhere that vodka enhances the effect of the chemo (bit like the steroids), we indulged in a cheeky vanilla vodka, ‘Absolut’ of course, as an hors d’oeuvre. Noting that the restaurant served San Miguel on tap as we walked in, surely it would have been considered rude not to place an order before we ate. Food was a lot better than expected and it was fantastic for the two of us just get out, chill, and have a good chat about non cancer stuff.

Up at the hospital now for the start of cycle 3 and having had a few good sleep nights, I feel rested and as prepared as I can be. They’ve taken my blood, which they do prior to every Velcade injection, but this time they’ll also be checking my paraprotein level again. Will get the results on Thursday…….I’m sure you can’t wait!!