Before - During - Sinead

We all have full confidence in Marcus' sheep shearing abilities...



He's clearly pleased with the results!!

I presume it was the Sinead O'Connor look you were after sir?

21.12.12.

So, 21.12.12 has pretty much passed and the world hasn't come to an end.....but my hair has given up the chase and started to fall out. That could have been the end of my world if I wasn't such a slap head in the first place!!

Stage Two.....Tick

Another massive tick in the box on Monday, with a very positive outcome to my stem cell collection. All the bone pain over the weekend proved worthwhile as the growth hormone pushed my stem cell production into overdrive......"enough for 10 transplants" to quote the doctor. As the old saying goes "no pain, no gain", and it proved very much to be the case. The effects from my last chemo also joined the party over the weekend....boy was I tired. I just about had the energy to go and watch Marcus play fooball, but that then wiped me out for the rest of the day.

My old man (who's not a dustman and doesn't wear cor blimey trousers ) took me up to Hammersmith and was great company and support during the four hours I was hooked up to the apheresis machine. I must say, four hours lying still wasn't a bundle of fun, especially with my dodgey back aching like a.......er......aching back. Lots of tubes, IV bags, whiring noises and spinning knobs, but the outcome was a bag full of mini me's that looked very much like strawberry milkshake. The nurses were most excited.....it was all very 'celly' apparently!! I play it down, but in all seriousness, I can't emphasize enough  just how important it was to have a successful stem cell harvest. Without it I would at best have had to try another mobilisation drug, at worst, it could have been the end of the road with respect to having a transplant. So...all in all a huge step forward and a fantastic outcome to stage two of my treatment.

So, what now? Well, rest is on the cards for me on the run up to Christmas, trying to recover from the compound effects of chemo, growth hormones and lack of sleep. I'm not due back at Hammersmith hospital now until 2nd Jan, but still have a few visits to Kingston hospital for Zometa injections etc.

Looking forward to a relaxed Christmas with my family, good food and a few (too many) cheeky beverages!!

Kitchen Appliances on Strike

Just when I was looking forward to an uneventful week of growth hormone injections and bone pain, our boiler and fridge freezer decided to get in on the act and stop playing the game.....well, stop working. Oh how we laughed on Tuesday when the boiler went bang, on conveniently the coldest morning of the year so far. To acuse the fridge freezer of not working is a little unfair, it was only the door hinge that decided to break. Anyway, the situation was cooly recovered and both were up and running the following day....so no real need to feel sorry for us...you can if you want though!!

Anyway, I'm now looking forward to the weekend, with two injections a day and supposedly more severe bone pain, in preparation for the stem cell harvest on Monday. Saying that, the pain so far hasn't been an issue, just more of an annoyance at night time. In fact, probably more of an annoyance for Len, keeping her awake with my constant twisting and turning...mixed with the occasional heart wrenching sigh!! What I am looking forward to is hopefully watching Marcus play football on Saturday and Sunday...it'll take my mind off the disappointment of being an Arsenal fan right now!!

Have a great weekend you'all.

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!!

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!!

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!!

Consultant

Biopsy over and all went as expected. I felt pretty sick during the procedure, but managed to keep it all in though.....however, my nurses’ hand did get rather crushed during the process!! The biopsy seemed to go much quicker than last time, only taking about 10 minutes to complete. That said, when I tried to explain what it felt like to Len, all I could think of was the good old days of traditional dentistry, when local anaesthetic for deep fillings was a forgotten art form and the dentist seemed to take great pleasure in ramming the drill straight into a nerve. Not wanting to get too graphic, as the syringe punches through the bone into the marrow, you do experience that raw nerve sensation right down your leg. Still, as I said before, it's was all over very quickly....unlike giving birth (felt obliged to say that!!).

More importantly our meeting with the consultant on Monday left both Len and me feeling more upbeat and informed about my reaction to the chemotherapy and the next phase of treatment. He remains very positive about my response to the Velcade (both in my paraprotein levels and the shrinkage in the tumour on my sternum), hence the biopsy, to confirm the actual impact on the myeloma cells in my bone marrow. He re-emphasised that anything over a 50% reduction in paraprotein is considered a good response to the drug, and I'm fortunately in that position. He again confirmed that the plateauing was fully expected and the period of stabilisation that I'm now going through is positive, in that it indicates my body is still receptive to the drug. The plan remains to have an eighth cycle of chemo, though it may well be spread over 4 weeks to take me through to pre-Christmas. The current plan to complete the transplant early next year remains on track, and I'm booked in to see the specialist who heads up the transplant team at Hammersmith Hospital on 6th November. From what I understand, they'll be completing a number of ‘work up’ tests in December to ensure I'm in the right physical condition (read 'man' enough) to go through the high dose chemotherapy and stem cell transplant process.

Finally, last week was not a good week for us, and I just want to say once again how humbled and encouraged we've been by all the texts, chats, e-mails and blog comments that we have received. We can't explain how much it all means, knowing that we have your thoughts, prayers, support and most importantly, friendship. Thank you so much.

 

Biopsy

I knew that straw was looking pretty short before I pulled it out of the bucket yesterday. The lucky looser gets to have a bone marrow biopsy today.......oh the fun of it all!! Just to let you know, if you hear any faint background screaming at around 12:30 today, just block your ears and go about your normal business.

So, I'll give you more of an update following yesterdays consultation when I get back. Need to decide whether a couple of cheeky vodkas down the pub beforehand will help in any way....or whether to just rely on the local anaesthetic!!

Tears

Greeted todays paraprotein count with a few tears. I can't deny I'm disappointed that the count has remain at 11, suggesting I've reached this plateau. What I've got to do is remember that the paraprotein count is just a blood indicator and may not correlate directly with the concentration of myeloma cells in my bone marrow. Most importantly, the count is stable....it's not going back up.

But you know what, for whatever reason, today I don't care. I don't feel so positive, I didn't when I woke up, I don't now. Even writing this is making me feel upset, because I think more about what the future holds, not just over the next 6 months, but the next year, 5 years. What challenges lie ahead, how will myeloma impact me, what will my quality of life be like, more importantly, what will my families quality of life be like. Lots of unknowns...and today, I don't feel good about them.

What I won't allow myself to do is wollow....tomorrow is another day. However I will allow myself to get down about the situation I face sometimes, I need to cry, I need to feel not so damn positive about things all the time. It's a release and to not do so would be false and probably not healthy for me.

So, what can I say. I see my consultant next Monday and get his latest view on the results....but I'm assuming no change to the plan at the moment. Yes I'm disappointed....not to the extent I felt as we drove into Eastbourne earlier this summer...but disappointed all the same!!

Milkybar

We’re at the start of cycle 7 and it’s not just any ordinary chemo day. Today I’m celebrating my 25^th Velcade injection. Bit disappointed the hospital hadn’t taken the time to decorate the room or bake a cake…..anyone would think they’ve got something more important to be doing!! Anyway, putting all that to one side, they’ve taken my blood today and I should get the paraprotein results on Thursday. The last 2 counts have been eleven, so here’s hoping it’s gone down to 10. I also had my monthly dose of Zometa, the bone strengthening drug. I’ve been told I need to take this drug for the next 2 years. I tried to convince them that eating several Milkybars a month would likely have the same effect, but they just wouldn’t listen to my sound logical argument.

My cough/cold still lingers, however I got the results of my chest x-ray today. All clear from an infection perspective, but apparently I have long lungs. Didn’t have the nerve to ask whether this was a good or bad thing…….well Mr Hoban, most people with that kind of length generally end up lapsing into a coma by their 46^th birthday…oh well, we now await Thursday and the next paraprotein count.

I spent the weekend over in Sweden visiting my bruv and family. Also met up with some old friends and it was great to catch up with everyone again, talk about the good old days, whinge about the kids and wonder why they don’t behave quite as perfectly as we did when we were that age. Do they not realise just how lucky they are!! I even got to play golf…well, I say play…. hacking and blundering my way around a soggy field is probably a better description. Some would say a good walk ruined, but I actually had a really good time. Clearly not in the same league as lying next to the pool in the Caribbean, ice cold beer in hand, but you know what I mean. I didn’t even swear or break a club, that’s how much I enjoyed it!!

Finally, following the weekend away I’ve decided I must start to look more ill, especially if I’m ever going to secure a high sympathy vote. Too many comments on how well I'm looking surely can't be healthy for me!!

 

Chest infection

This damn chest infection just keeps on hanging around. After finishing the last lot of antibiotics on Thursday of last week, things took a turn for the worse over the weekend, culminating in a visit to haematology day care at Kingston Hospital on Monday for blood tests and a chest x ray to confirm whether my infection had cleared. Anyway to cut a very exciting story short, I'm back on the antibiotics for another two weeks, which will hopefully do the trick. And the perks of having cancer just keep on coming.......I'm now entitled to free prescriptions and the proud owner of an NHS Medical Exemption Certificate. Who’s jealous now then!!

Another eleven

So, the results are in and it's another 11 for Mr Hoban. It hasn't gone down, but at the same time it's not creeping back up either. And you never know, could have been 11.99 last time and 11.01 this time....gotta keep positive. I think the fact that they were flushing out the blood analyser yesterday to clear out the rust probably hasn't helped either!!

The consultation I had with my specialist yesterday also calmed any nerves I had regarding the paraprotein results. He made it very clear that I'd already had a good response to the chemo, with my level below the 50% mark, and that we'd continue with the Velcade for the planned eight cycles to maximize the response. He was confident that I'd be going for the transplant up at Hammersmith hospital early in the new year, with the possibility of going up before Christmas to see Santa and get my stem cells harvested.

So, that's it for this update. Still feeling the effects of the chest infection but hopefully the antibiotics will kick in over the weekend. Another eleven, but everything still looks good and remains on plan.

No results.....

A very quick update from today........no paraprotein results, they've been delayed, but hopefully I'll get something back tomorrow, else next Monday. What I have got however is a chest infection, so I've now been prescribed antibiotics by my consultant and I'm thoroughly looking forward to another night of sucking throat lozengers and keeping everyone else in the house awake with my coughing. More tomorrow....

Off to hospital

Fingers crossed for todays results......

An important cycle

Just returned from the hospital following my first injection of cycle six. We're now just holding our breath, with fingers and everything else crossed, waiting for the paraprotein results due on Thursday.

Unfortunately, I've had a cold for the last few days, which initially took me back to the Quasimodo days of cycle one. For whatever reason, when I pick these things up now and get run down, my eyes tend to puff up. I know what you’re thinking….Len’s clearly had enough of his mood swings and has given him a damn good beating. Not the case, as this week I’ve been on my best behaviour….aided by the fact I’ve been steroid free for 10 days!! Anyway, you'll be pleased to learn that the swelling has now subsided, enabling me to develop more of a 'just woken' Goofy look. That said, the cold remains and the results of todays blood test (for the medics amongst you) show a WBC (White Blood Cell) count of 9.4 and a C-reactive protein of 5mg/l, showing my antibodies are putting up a fight.

So, roll on Thursday, when I get my blood results. As I’ve eluded to in a previous blog, these results will probably determine whether I continue with the Velcade for further cycles, or move to another chemotherapy drug. Let’s pray for the former.

13 years

Celebrated our 13th wedding anniversary on Tuesday night with a meal out at our local tapas bar. Great food, great night! After making a reference to Princess Fiona in my previous post, the subject came up for discussion. Len pointed out that Princess Fiona was actually quite feisty and opinionated, and eventually turned into an ogre herself. At which point Marcus interjected '...so, you're Princess Fiona, Dad's Shrek......does that make me the donkey?' Biggest laugh of the night!

'Family Hoban'

Cycle five

Well, cycle five of my treatment has turned out to be more …what do you say….’challenging’ than previous cycles, both on a physical and mental level. Last weekend proved to be not my finest hour, as my continuing back pain (hangover from the Barcelona trip) compounded the feeling of steroid withdrawal, and made for what one could only describe as….err….a mess. I know the side effects will accumulate and there is clearly a build up, however this felt like a more significant step change. I was probably taken a bit by surprise, which meant I was less able to maintain my more usual levels of control and patience. Some might see this as a positive development when compared to my more typical male trait of total emotional immaturity and detachment, but judging by the tension it caused in the family household…probably not. So, to put it simply, I was moody, angry, and generally a bit of a pain in the arse.

Len tried in vain to maintain a Princess Fiona demeanour, as compared to my more Shrek like approach. I must say, on the positive side, with Marcus out dragon boat racing for the day, it did enable me and Len to get some concerns and feelings off our chests that had clearly been bubbling up for a period of time. As always, on his return, a few carefully selected words from Marcus seemed to diffuse the situation…….'Dad, you really are just a getting a bit old and manky'!! Getting old and manky...that ship sailed a while ago mate!!

Anyway, change of subject. I’ve written several times commenting on the amazing support and encouragement I’ve received from everyone, and what a real eye opener it's been for me over the last few months. It’s re-confirmed just how important close friends and family are, especially when thrown this kind of challenge. It’s also given me a bit of a kick start, to put more effort into meeting up with friends, where previously there just didn’t seem to be the time. You know, for whatever reason …life just seems to get in the way…..ok, let’s blame it on the kids...it’s all their fault!! Anyway, had a fantastic time meeting up again with two of my oldest ‘bruvs’ the other day, chance to reminisce, take the piss and have some wholesome, totally un PC conversations.  

Finally, picking up on a number of ‘deeply personal’ comments following my last blog entry, I thought it was worth clearing the air….and my sexual orientation, by including the following ‘full context’ photo of my T shirt. Hope this restores some faith in my manhood (probably not)……and for the avoidance of doubt, it was a San Miguel top, not shandy….that’s how hard I am!!

 

Looking at it, 'Sugar Puff's really isn't that much better!!

Eleven

Got my full blood results today. My paraprotein, IgG  level had reduced by one  to 11 g/L at the end of cycle four….I’m sounding  like a city trader!! Based on the brief conversation I had with my consultant over the phone and his continued positive comments on my response to the treatment, I should probably be happier than I’m actually feeling. However, thoughts of this ‘plateauing’ have started to creep into my head….niggling doubts and the uncertainty of what next if levels stay the same. The treatment plan remains the same; continue with the same drugs to maximise the response as a lead into the high-dose therapy and autologous stem cell transplant. The results from the next two cycles will no doubt go a long way towards determining timings; providing my paraprotein levels continue to fall, I’ll continue with eight cycles of Velcade. If the level remains the same, I’ll be into a probable bone marrow biopsy to determine the actual concentration of plasma cells in my bone marrow prior to any decisions being made.

I’ve also been thinking more about the tumour on my sternum.…yes, it has clearly decreased in size. But, having only had a clinical examination, there’s no exact measures to quantify what the reduction has been…..spot the engineer kicking in!! I can still feel a lump, so next time I talk to my consultant I’ll be raising the subject of future scans.

A large part of my recent feelings of anxiousness stem from the stage I’ve now reached in my treatment plan. Today, the decisions that will soon have to be made are hanging over me. I know, focus on the now and don’t run ahead of yourself.  Easier on some days, difficult on others….and now is one of those more testing periods. Today has been a day of thoughts and tears. Tomorrow will hopefully be more positive.

Eleven.

 

Barcelona

Back again. Just returned from a short break in Barcelona, great to get away again for a few days during my rest week. Managed to step it up a bit from the beach volleyball of the Olympics and give Marcus his first experience of ‘topless beach volleyball’ on the beaches of Barcelona. Daddy was obviously horrified….could even say traumatised by it all. Clearly I chose not to look, instead concentrating on enjoying a cold San Miguel at the bar. Must say though, body surfing with your son in the Med (pre San Miguel)….can’t beat it!!

 

We took a tour around the Nou Camp…or is it Camp Nou, still don’t bloody know. Interesting to get access to some of those places you wouldn’t normally get to see, press office, changing rooms and access to the pitch. Surprised the changing rooms were so basic….secondary school wooden benches and I’d like to see 11 players fit into that Jacuzzi.  

 

 

Couldn’t believe this one….a chapel connected to the tunnel the players use to walk out onto the pitch. Kept looking at it thinking…..wouldn’t get that a Stamford Bridge…..maybe a lap dancing bar or kebab stall, but not a chapel!!

So, back at the hospital again for the start of cycle five. They’ll be taking blood for my paraprotein readings today, so will get the results on Thursday. Must say, having time away really takes your mind off things, however it does mean you hit the ground with a bit of a bump when treatment day returns. It starts to feel a little like you’re living a double life. On the one side there’s my ten days rest, when a sense of normality and routine returns, on the other there’s IV drips, injections and pill popping. I’m not complaining, just telling you what I feel. It’s the stark contrast that probably further emphasises the situation….staring out at the Mediterranean Sea, drinking an ice cold beer whilst listening to ‘Sunday’ by  ‘Hurts’ on a Saturday  and, well, staring out of the window in Kingston hospital, looking at the A&E building at Kingston hospital on the Monday.

 

Saying that, I’ll be staring at the A&E building with the good memories from our Barcelona break, picturing John Terry and Ashley Cole kneeling at the altar, crucifix in hand, praying prior to taking to the pitch at their next Premier League fixture!!

 

"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!!

Bike ride

Our baby has all grown up.......final day for Marcus at primary school. He had a fun last day following his body popping dance routine on centre stage at yesterdays year 6 leavers disco. Secondary school and teens next.......not long and he'll stop talking to us all together!!

A positive visit to the consultant this afternoon. He's happy with the progress made so far and the way I have reacted to the chemo. He even made the comment 'so where's the tumour then....everything looks normal'.

And the icing on the cake, finally an evening without rain. Just returned from a bike ride around Richmond Park. Really nice to get out.

Tongue

It was good fun to have some relatives over for the weekend. They're so easy going, so I could just relax and chill without having to think of things to do. Seemed like we spent most of the time trying to work out whether we're first cousin once removed, or second cousins or whether something else was meant to be removed. Maybe that's why I was numb.....nothing to do with the drugs!! Parents also popped over on the Sunday before flying out to Sweden to stay with my brother.

It turned out to be a low energy weekend, with the post steriod drop off feeling of numbness and fatigue really taking over from Saturday evening. It's difficult to describe the numbness, but it's a sensation of being 'detached' or just out of focus.  It's also clear that with tiredness comes emotion and it appears from seemingly nowhere. I started to cry when the Velcade was going in last Thursday....I don't know what triggered it, I wasn't worked up beforehand, I wasn't feeling particularly sad or thoughtful.....it just happened. I had very little sleep the night before, and I suppose things just all add up on occasions. You start to question the situation a bit more, the prognosis and what lies ahead. The same happened on a few occasions over the weekend. The lack of sleep certainly catches up with you. Len and I are starting to really appreciate our regular 3:30am rendezvous......that sounds quite exciting and way too raunchy.......I mean a cup of tea and a read! You know you're in trouble when you've read two articles on how the banks set Libor and you're still not feeling drowsy!!

I've also decided to withdraw my application from the '2012 Beautiful Tongue Awards'. Having become aware that all drinks had started to taste like seawater, I thought I'd do a brief tongue inspection. You'll be please to know that the white shagpile rug I found that had replaced my tongue is now under control (with the aid of some prescribed medicine) and things are returning to normal.......and there I was thinking that steriods gave you a hairy back!! Very naive.

I've got an appointment with my consultant tomorrow afternoon. Not expecting anything other than a routine check up, but will probably ask a bit more about future bone marrow biopsies.

Olympic Flame

The nearest I'll get to Olympic glory this year......
or any other year for that matter!! 

Myeloma UK

Here's a link to an interesting article featured today in The Times, discussing rare cancers and some of the challenges associated with them. It highlights the topic of drug access and the campaign work of Myeloma UK, which is now obviously a subject close to my heart:

http://resources.myeloma.org.uk/pdfs/Times%20Article%20-%20July%2010%202012.pdf

Paraprotein

I’m sitting here, hooked up to my second dose of Zometa (the bone strengthening drug which I will take every four weeks for the next two years) thinking ‘it’s been six days since my last post’. Why…well, in truth, I really haven’t felt like writing anything over the last few days. Funny really, because the results I got last Thursday were a real cause for celebration. The blood tests taken just before the start of my second cycle of chemo showed that my paraprotein level had dropped from 21 g/l to 17 g/l. This is another strong indication that the treatment is working!!

A few people have asked about paraprotein levels (for the Swedes amongst you, that’s ‘M-komponenten’), so here’s a simple explanation from the Myeloma UK website. Myeloma is a type of cancer arising from plasma cells which are found in the bone marrow. These plasma cells form part of your immune system. Normal plasma cells produce antibodies that help fight infection. In myeloma, malignant plasma cells in the bone marrow produce large amounts of an abnormal antibody known as paraprotein. Unlike normal antibodies, paraprotein lacks the capacity to fight infection and has no useful function (apart from giving you the looks of Quasimodo!!). It is often through the measurement of this paraprotein that myeloma is diagnosed and monitored.

From what I currently understand, the ideal is for this count to reduce to zero, at which point you’d to be considered to be in complete remission. Again, myeloma is such an individual disease, so there’s nothing exact about these values, and as far as I know you can have a paraprotein count of 2 to 3, and still be considered in remission. That’s something I will understand more about in the future, but for the time being, I’m responding to the treatment and things are heading in the right direction. I’m counting my blessings.

Anyway, back to why I haven’t been in the mood to post a blog for the last few days. I’ve had a real lack of energy, partly due to an on-going cold, and certainly not helped by my broken sleep. It’s turned into a bit of a running battle for me. My brain on the one side, trying to convince me that I’m OK to carry on with my normal routines, and my body on the other, telling me to stop and listen. I’m frustrated by this standoff at the moment, but as everyone says, I need to listen to what my body is saying. I need to make that adjustment, to accept that this treatment will weaken me. It’s difficult, because I just want everything back to normal, back to the way it was. The feeling of numbness that I’ve previously experienced really took over, and in hindsight I probably wasted energy trying to fight it. No one said this was going to be easy, and hopefully this weekend has been a lesson for me……just listen to your body! Either that or stop complaining and just get out there a cut the bloody lawn!!

Len and I often talk about these kinds of issues. We learn a lot from each other (though mainly her off me obviously!!), but when it comes to these more ‘behavioural’ issues and techniques, Len takes the lead and is clearly the more informed member of our family. She re-emphasised that, if myeloma is what we’ve got to deal with, how grateful we should be that the tumour on my sternum exposed this disease so early. How fortunate I was to have the trauma in the summer of 2010 (sounds more convincing than ‘mishap on a water slide’…) that seemingly weakened the bone and allowed this otherwise hidden disease to surface. Most people are not so lucky, and many do not even discover they are sick until their kidneys are no longer functioning. As I’ve said before, considering I have multiple myeloma, and how it could have continued to attack my body and destroy my plasma cells for many more years, I’m in a good place.

Eye Update

Having had this snap shot taken as I left A&E on Sunday, you'll be pleased to know that my left eye has returned to pretty much normal!

I've also been thinking. Following my trip to Goodwood on Saturday, if I can get myself another 999,943 followers for the blog, push out a few more sob, sob stories, then convince everyone to contribute £1 each towards my suffering, I could treat myself to a Koenigsegg Agera R at the end of all this. Not that I'm materialistic, obviously good health is far more important.....it does look good though!!

Just a brief update on the side effects at the start of cycle 2. I've already noticed a repeat of cycle 1, with my sleep pattern broken up due to the steriods and my gastric reflux kicking off again. If it remains aligned to cycle 1, both should improve over the next few days. I still remain aware of the peripheral neuropathy, but so far so good.

From Goodwood to A&E

Well, that was an eventful weekend, from the highs of Goodwood Festival of Speed on Saturday, to the lows of A&E on Sunday morning.

So, first the good. My brother was over from Sweden for the weekend and had booked some tickets for Goodwood. We’d decided to head off at 06:30 (whose crazy idea was that?) to avoid the queues, a strategy that paid off, as we were wondering around the Formula 1 paddock by 08:30. We had a superb day trying to decide what supercar to buy……well, at least a cheap plastic model in the merchandise shop!  We got to see the Chris Evans Famous Seven Ferrari collection, a far more impressive set of vehicles than Patrick Hoban’s shagged out 13 year old Subaru Impreza and 125cc Suzuki scooter….err….collection. Clearly my career in engineering has not been quite as financially rewarding!!

Marcus joined us with a friend of his, and neither could contain their excitement at actually touching a Bugatti Veyron Grand Sport. ‘No, Daddy won’t be buying you one of those for 1.5 million pounds, when there’s a perfectly good Subaru that could be yours if you play your cards right when you turn 18!! The place was awash with Ferraris, Lamborghinis, Lotus’, even a Koenigsegg Agera R for our Swedish contingent. Highlight of the day must be watching Jenson Button having a ‘play’ with his McLaren F1 on the track, and pretty much burning through one set of tyres during the first half mile of the hill climb. Not good for the environment, but great entertainment!

So that was the good, now for the bad and the ugly. On Friday evening I’d noticed that my left eyelid was looking a little red and by Saturday morning it had started to swell up more noticeably. Normally, I wouldn’t have worried about it, but during the chemotherapy my resistance to infection is lower, and an infection is something they’d need to treat immediately, before continuing with the chemotherapy. I spoke to my consultant whilst I was down at Goodwood, and he advised that I should go to casualty.

Having decided that Saturday evening in A&E probably wouldn’t be a pile of laughs, I waited until Sunday morning to go up. The fast track card worked its magic and I was  quickly taken through to an isolation room to see a doctor. Having taken my blood, I was put on an IV of antibiotics as a precaution, just in case the blood results showed that I had an infection. Fortunately, the results were good, including a normal white blood cell count that indicated no signs of infection, so after three hours I was let out early for good behaviour!

So that was my Sunday morning, not the best way to spend it, but at the same time, I really appreciated the speed and manner in which the medical team in A&E dealt with me. Probably not the last time I’m up there, but we will deal with each situation as and when it comes along.

Little word of advice and a safety tip for you all....don’t go cycling before 10:00am on a Sunday morning!  When I arrived in A&E there were already two lycra clad cyclists with various parts of their face padded up and bleeding, to be rapidly joined by a young lady cyclist who’d clearly decided to have a go at ploughing the road with her forehead. You’ve been warned!

So, that was my weekend, eventful, but overall I’d say a good one.  Other than my eye, it was fantastic to see my brother again and a fun ending to a really good ‘rest’ week for me. 

So, how am I feeling now? Well, having just returned from my first injection of cycle 2, I’m on a high…..and no, that’s not just because of the steroids!

I’ll take the negative news when it comes, but I also need to be happy with good news, so let me quote you from the letter I’ve just been copied in to from my consultant to my GP. ‘Most importantly, his plasmacytoma has decreased in size and feels much softer compared to that at diagnosis. This suggests an excellent response to his chemotherapy’. 

I’ll take that one!!

Rest week

Thought it was worth sending out an update now we're heading towards the end of my 'rest week' from the chemo. I'd already made the assumption that physically and emotionally, I wouldn't have the ups and downs of the previous two weeks. I knew this was a recovery period, and having been very fortunate with the side effects so far, I expected things to be stable and more settled. They have been. In truth, it's been the return to some form of normality in my daily life that has been the surprise winner this week. Just that feeling that things have reached some kind of equilibrium, following the turmoil of the previous weeks, has meant so much. It's also knowing that I head into the second cycle of chemotherapy being slightly more sure and familiar with things. Most importantly, it's been a non-prune week, and things are still moving down there.....result!!

Reference my previous post on 'laughing in the face of the law'....well, having an adult conversation with the parking warden over my ticket, here's a picture that my Swedish friend found and posted on Len's Facebook page. Winding up traffic wardens.....just how low do you think I can stoop!!

A rough translation from Swedish: 'Well...just start looking! You damn bloodsuckers! Hugs, David'

Moving on, I'd just like to thank you all again for your cards, txts, comments, words of support and positive vibes. I can't tell you how much I appreciate it and what a difference it has already made to my outlook and general well being. A massive thank you to you all!

I'm off to watch the Germany v Italy match now. Enjoyed the Spain v Portugal game yesterday. Clearly the likes of Ronaldo and Xavi don't prescribe to the pre-match donar kebab and chips that our English boys enjoy as part of their pre-match build up.

Parking

I've been in work today and feeling much 'clearer' in my head than what I've felt over the weekend. Having struggled a little with sleep during the nights (which I was told could be the case), I'm hoping that things will level out over the next few days. All work and no sleep makes dad a slightly more miserable old git than the highs he usually manages to achieve in a good week...

Interestingly, my lack of patience was on full display last week when I managed to pick up a parking ticket outside my house. My hospital parking permit had slipped and covered the '2' on the 'valid to 30/9/2012' date on my residents permit. Marcus spotted the traffic warden issuing the penalty notice. I shouldn't be surprised, but it's so obvious how limited our (mine and Lens) tolerance is for any more of 'lifes little challenges' at the moment. Our bucket is full and our patience thin. Needless to say, I was very mature in the way I confronted the traffic warden.....your average 16 year old would have been so proud of my performance!

Fatigue

Well, that's the first cycle of chemotherapy complete, so I've now got a rest period for 10 days until cycle two begins Monday week. I consider myself to be very fortunate to be looked after by the same medical nurse every time I go up for my therapy. She is very knowledgeable on the disease, its treatment and the potential side effects, and this familiarity and routine can only help us to build a strong and more personal understanding over the coming months.

Last night (Wednesday) proved to be a strange one. I felt fine in the morning, so went to work during the day, and then decided to go on a bike ride with Marcus along the river path when I got back. I'm already aware there is a noticeable dip in my mood and energy levels when I come off the steroids, so perhaps it was not the best night for me to then meet up with a few friends for a quick drink in the local pub in the evening. That said, I really enjoyed the chat, it gave me a lift. I just need to be more conscious and respectful of fatigue and the impact it has on my physical and mental limits.

Unfortunately, even though I felt tired I just couldn't get to sleep, and in a moment of complete madness, decided to take on the subject of 'what triggered my myeloma?' It's amazing what your mind can run away with....and it's never positive. Put it this way, I wasn't lying there thinking, you know what, this must of happened as a result of that flight over the Grand Canyon, when we were in Vegas last summer....funny that!! Intellectually, I know this has not been the result of a physical trauma or stressful experience, it is entirely random and unfortunate. Whether we like it or not, that's life. So, my conclusion...well, this seems to rule out any possibility of suing my builder for my illness...case closed!!

So, last night ended in me watching highlights of the final round of the US Open golf at 4 o'clock , followed by highlights of the second one day test match between England and the West Indies, with Len supportive as always, awake next to me, probably wondering why I didn't just stick to the 'what triggered my myeloma' debate, with the lights off...

It's going to be interesting to see how the 'rest' week goes. I'm expecting a dip over the weekend, but then I'm sure things will pick up as my body recovers over subsequent days. I'll keep you updated with the highs and lows, whether driven by physical condition or sporting achievements (not mine).

Big smiles

We were really encouraged today after meeting my consultant. Having examined my tumour on my sternum, he was really satisfied to see that it has already started to decrease in size and has noticeably softened since I started the therapy. Guess who had big smiles on their faces as they walked out of the hospital this afternoon!

Energy levels

Patrick Hoban, reporting live from his hospital bed, awaiting the third injection of Velcade, blood pressure 135/70, pulse 68, face slightly sun burnt.

Well, week 1 can be ticked off and so far, so good. I’m starting to notice a real drop off in my energy levels and general feeling of wellbeing the day after I come off the steroids. I’d been made aware that this was likely to be the case, but yesterday was the first time I experienced a real sense of numbness (apart from Friday night, when the Sweden v England game was on). From the first day of this treatment, there’s been one side effect that I’m desperate to avoid, peripheral neuropathy. I’ve spoken about this in a previous post, not because of its physical affect, but because of the potential impact it could have on my on going treatment. Yesterday felt like a small scale battle between the one side of me that was thinking ‘my fingers feel numb, this could be the start of neuropathy’ and the other, perhaps more rational side of me that was saying ‘this is chemotherapy, you will feel tired and less alert’. I know I’ve got to learn to control and steer my thoughts, especially when I can see myself becoming almost paranoid and over analysing every little pain or strange sensation in my body. As I go through my chemotherapy cycles, I’ll  develop a better understanding of how my body reacts to the treatment, it won’t be so alien or unknown. I know this will also help to moderate my more outlandish thoughts

So let’s go back to Friday night. I’ve now got a new goal in my life. After witnessing 90 minutes of ‘the beautiful game’ I now genuinely believe that I’ve got the necessary footballing skills to play for England. Maybe not this time around (especially if we’re drawn to play on a non-steriod day), but the 2014 World Cup could be a realistic option. I’ve even been told that post chemotherapy your hair can grow back stronger and more curly. Me and Rooney could even be sporting the same haircut!!