Two Eventful Days

Back at home now after two eventful days in hospital. I say two, in fact one eventful day and one lounging in bed trying to get some sleep. I actually ended up staying in one of the isolation rooms that will be my home for a month, come January. It proved to be a real reality check....but a positive one and definitely something that I feel will better prepare me for what's to come. It really brought home the position I'm in, and just how vulnerable I'm going to be during the transplant process.



How much is that doggie in the window? The one with the balding head!!
 

But that's then, for now it was rise 'n' shine at 06:00 on day one with observations, followed by a trip to the imaging department for the insertion of my Hickman line. I guess surgeons have to explain to patients what could go wrong with any operation before you sign on the dotted line, but I must admit, it does somewhat destroy the romance of those 'pre op' moments!! Anyway, things went well, in fact the most distressing part of the whole procedure was having to listen to the crap 1970's jazz the surgeon insisted on blasting out the whole time.....well that and the foam slippers I had to wear!! So, the Hickman line is now in and it will be used for the administration of all IV drugs and taking blood until my transplant is complete.

Wifey was there to welcome me back to my room, and it was great to have her around for the rest of the day. Treatment continued with hydration through a saline drip for 3 hours in preparation for the etoposide chemotherapy. For all those die hard Harry Potter fans out there, an interesting fact. Etoposide is made from the mandrake plant. It's no longer used to cure those who have been petrified, but is used in the treatment of many different types of cancer by stopping the cancer cells from dividing. I didn't even get to hear it scream before it was mass processed and shoved in a syringe!! Anyway, the etoposide took ten hours to administer, finishing around 2 o' clock Thursday morning. I was once again very fortunate with regard to the immediate side effects, only really feeling nauseous towards the very end of the treatment. Well, some call it fortunate....others (ma east side bruvers) would say well hard....innit!! After that I was carefully monitored (read kept awake) through till around 8ish....hence day 2 trying to get some sleep.

With all my blood counts, electrolytes and vital stats stable, I was let out for good behaviour at round ten last night. So, back home now and I even managed to administer my growth hormone injection this morning. For someone who never used to like needles, life has moved on....however, still a little disappointed that Len didn't give me a brave sticker...or lolly pop. I've been very tired today and at times feeling quite sick, but the drugs I've been given have kept things under control. I'm also very concious and wary of my Hickman line, but I've now got some time at home to get used to caring for it.

Just to finish this blog entry, one thing has really impressed me over the last few days. I know it shouldn't surprise, but the friendliness, attentiveness, knowledge and over all professionalism of the ward staff was second to none. After my experience at Hammersmith last Wednesday, this was massively reassuring. Feeling sick again now, so back to bed for me....how's that for a wild Friday night!!

The Great Unknown

Here it goes, let round two commence. Off to Hammersmith now for a night on the ward, so I can be bright eyed and bushy tailed for tomorrows fun packed central line (Hickman line) installation and 10 hours worth of Etoposide infusion. Current plan is to be out on Thursday, else Friday depending on my blood counts and reaction to the chemo.

My worries still centre around the great unknown....everything remains so variable and 'individual'. It appears that side effects and how I react could range from absolutely nothing to near death, and all that lies in between. Just doesn't sit well with your average 'black and white' engineering type. That's medicine for you, and something I'm getting used to. As my consultant has said, this disease and the medicine used to treat it does not read the books!

Warning Graphic Content

Had my final velcade injection on Monday, great in many respects, but a little strange knowing that's it for my regular Monday and Thursday visits to Coombe ward. They've become part of my weekly routine over the last 6 month.....and old folk like their routines!!

                                    If the needle doesn't make you squeamish, the hairy arm will!

                                             The staff really enjoyed my handcrafted cake.
                                                      New career in cake decorating?


The rest of this week's been a mixed bag of blood tests, viral tests, heart scans and urine samples. All preparation for the start of my stem cell mobilisation next week, which kicks off with the installation of a central line and chemo on next Wednesday.

Must admit, I was more than a little dissappointed with Wednesdays visit to Hammersmith. Having supposedly arranged everything the previous friday, no one seemed to know who I was or what I was doing at the hospital when I arrived. The complete lack of co-ordination continued for the whole of the time I was there. The whole experience did little to inspire me with confidence and actually left me feeling really low....yesterday was not a good day as a result....I'm actually worried enough as it is thanks.

Ok, that's enough hospital bashing for now. Needless to say, I will be calling my consultant today to make him aware of my first impressions, with the expectation....er....hope that it won't be repeated on my next visit. Not in a threatening way, but in a 'people deserve to be treated better' way. After all, this isn't some minor procedure I'm going to be put through and I am really worried about what lies ahead.

Off to Kingston hospital now to hand in my 24 hr urine sample.....lucky them!! If I was taking it back to Hammersmith, I would have eaten asparagus last night, just to spite them!!

Last day

Last day at work for a while......felt strange, but lots of words of support and well wishes from my colleagues. My focus is now on treatment, family, recovery and a return to work.

PS. Marcus has just started to sing "What doesn't kill you makes you stronger"....timely!!

Nesting

My penultimate Velcade today and the consultant popped in to give me the results from last weeks CT scan....or not as the case was. He'd had a verbal update from the radiologist confirming that the tumour had shrunk as a result of the chemo, but didn't have the scan to confirm exact details/dimensions etc. We'll get that next Monday. So, one more Velcade left, then we move on to the stem cell collection......the clock's ticking.

Far more importantly, Len has accused me of 'nesting' recently. Not literally building a nest, but doing those odd jobs around the house....getting things ready....like when you're pregnant. Maybe it's not just a fat gut......maybe I'm expecting. Wonderful stuff that Velcade, though for the money you'd expect something quite impressive!!

Hammersmith Harvest

Well, I did promised to write a post Hammersmith update, so here it is.....better late than never.

We had a good meeting last Tuesday with the consultant who's going to be looking after me during my time up at the Hammersmith transplant unit. He's a little more black and white than my consultant at Kingston, a matter-of-fact and percentages person, but still very friendly and extremely well respected in the Haematology world. He ran through the potential outcomes of the treatment, but made it clear that this disease is different for everyone, and how an individual responds to the high dose therapy and transplant does not necessary translate to how long someone remains in remission. Despite the potential for an excellent response, like all other myeloma treatment, this process is not a cure and relapse almost always occurs. My job however is to keep focused, take one step at a time and remain as positive as I can throughout this next stage of the treatment.

So, what does the next stage of treatment look like. Well, my current and last cycle of Velcade takes me through until the end of November. Straight after my final injection I'll be up at Hammersmith for virology tests and heart scan to confirm I'm in a healthy position to start the stem cell mobilisation and collection process. Provided the results of these tests are positive, I'll be admitted to Hammersmith early December, so they can put in a central line (a catheter inserted into a large vein in your chest that I'll have in throughout the transplant process) and administer another chemotheraphy drug required to stimulate the production of stem cells. I'll be kept in overnight and hopefully check out the following day, with a bag full of G-CSF growth factor, for daily injections over the following 7 to 10 days. Once that course of injections is complete, the hope is that I will not only have understood what it's like being a teenager again, going through a growth spurt, but more importantly my stem cell production will have gone into overdrive. This being the case, the cells should start to 'spill' out into the bloodstream, and presuming the count is high enough, stem cell collection will start mid December. To do this I'll be hooked up to a apheresis machine, which effectively takes your blood, separates out the various cell components, draws off the stem cells, then returns what's left. The collection takes about four hours and will be repeated over a number of days until they've harvested enough cells for the transplant.

So that's the schedule for the stem cell collection, which takes us pretty much up to Christmas. I then get to spend Christmas and New Year recuperating, having my feverous brow regularly mopped by my good lady and getting to play with my numerous, very expensive Christmas presents....er....socks. We haven't yet been given the detailed plan for the actual transplant, but roughly speaking it looks like I'll be having the work up tests early in the new year, followed by the transplant mid January.

Anyway, hopefully that provides a bit more of an oversight into the whole high dose therapy and transplant process.Two more different chemotherapy treatments to go through, which at the moment is really quite a daunting prospect. That said, we're nearly at the end of the first stage of treatment, I've responded well, and I'm now one stage closer to remission.

Tomorrow

I did say I'd provide an update following my meeting with the consultant at Hammersmith......I lied!! Everything is fine, it's just that I'm really not feeling up to writing much now.....tomorrow however, is another day. Where's my steriods when I need them!!