Friday 30 November 2012

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!!

Friday 23 November 2012

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!!

Monday 19 November 2012

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!!

Monday 12 November 2012

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.

Thursday 8 November 2012

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!!

Tuesday 6 November 2012

Chapter Two Begins

Another brief update before we go and meet the transplant team up at Hammersmith hospital this afternoon. Yesterday, following my 1st injection of cycle 8, we had confirmation of the biopsy results from my consultant. The residual myeloma cell count is currently 10%, down from the 25% I had following diagnosis. He again re-emphasised that this was a good response,  and importantly proved that my myeloma is chemo sensitive. The plan remains to have one injection of Velcade per week, which will take me to the end of November, at which point I will be handed over to Hammersmith for the work up tests, stem cell harvesting and transplant. I assume we will be given more details for each of these three phases this afternoon.

Talking high-dose therapy and autologous stem cell transplantation, I read through the infoguide provided by MyelomaUK yesterday. I've been putting it off because, a) I wanted to focus on the current phase of my treatment rather than rushing ahead, and b) quite frankly I knew I'd find the whole transplant process quite daunting. Yes, I am very worried.....not so much from a physical side effects perspective, but more due to a fear of the unknown....how will I react, how mobile will I be, what if things don't go to plan etc. Reading through the booklet was of course necessary, but it did make me quite upset. Thinking about the two new chemotherapy treatments that form part of the transplant process and the effects of the high-dose therapy was one thing, but the booklet also provide an overview of the enormous physical and emotional strain that we can expect, the recovery period at home and the long-term effects of this treatment, such as organ damage and secondary cancers.

But as I've said before, I can handle all of this, I will continue to fight the fight and I have complete trust and confidence in the medical team that are looking after me. I'll give you further details on the transplant process and plan sometime over the next few days (when my heart beat has dropped below 150ppm).

Just to wrap up, the side effects from the Velcade continue to build up. I've noticed more definite bone pain, increased overall numbness and fatigue as well as signs of peripheral neuropathy in my fingers and toes. I've also noted that my previous, almost non-existent, muscle tone has become non-existent, and as a result I've started to do more daily strengthening exercises (as clearly just lifting pint glasses is not working for me). Please note, for anyone thinking of taking advantage of this weakened physical state to bully me, I ask you to consider my current emotional condition before doing so. Thinking about it, that would probably just encourage you!!

Thursday 1 November 2012

Happy days

Just got off the phone to my consultant (yes....he called at 6:30pm) and he had good news from the biopsy last week. In his words 'only residual myeloma cells remained in the marrow, so the Velcade is doing its job'. He was very encouraged by the results. All remains on plan and cycle eight will now be spread over four weeks (one injection per week), starting next Monday, with the aim of keeping my paraprotein count stable until the stem cell transplant.

So, it's a happy family Hoban tonight. Still a long way to go, but tonight.....it's time for a celebratory beer!!