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!!

Sweden v England

Myeloma definitely takes second place in the Hoban household tonight. Mrs H on one side of the settee, me on the other, and Marcus in the middle wondering who to support. Forever the diplomat!!

Mixed emotions

It's been a mixed couple of days emotionally speaking. I went into work on Tuesday as I was feeling fine with the side effects from my first chemo injection. I think the level of support and genuine concern I received from not only the team, but from other people I've worked with was almost overwhelming. Don't get me wrong, this encouragement will carry me along way towards beating this thing, but I was honestly stunned by everyones engagement. When I got home I started to think whether my situation had really sunk in yet...whether I'd almost been taking this disease too light heartedly. But I know that's not the case, it's just the way I've decided to deal with it. Positive thinking, visualisation and just not taking things too damn seriously is what works for me and I will try my hardest to maintain this attitude during the difficult times and decisions that I will face over the coming months and years.

Yesterday was a more stable day emotionally. I'd been told that I could expect a bit of the low as it was the first day off the steriods. I noticed that my 100 meter times had dropped off quite significantly, but other than that, there was no real noticeable difference during the day. Still got a way to go to meet that Olympic qualification standard, but I've worked out that I'm still due 14 more doses of steriods before the opening ceremony, so there's time. Me and Dwaine.....team GB!!

Last night was the first time I really felt any sustained side effect from the treatment. I woke up around 1 o'clock and spent several hours shivering under the duvet, with Len having to re-heat the bean bag to try and keep me warm. Eventually dozed off in the early hours but woke up quite dizzy and drowsy. This gradually wore off during the morning, so by the time we arrived at hospital I felt much better.

So, that brings us to today, the second injection of chemo. It generally takes around three hours to complete the process, taking a blood sample to check platelet counts etc., get the results back from the lab, then administer the anti nausea drug and Velcade. The actual injection of chemo only takes a minute, so I consider myself fortunate when compared to some other chemotherapy regimes. It's then a 10 minute wait before they take blood pressure and pulse, then kick me out. Apparently the Velcade is 'made up' in north London, then couriered down on the day, it's got a short shelf life. I'm sorry, but I just can't get this image out of my mind, of a couple of 'northside' brothers mixing this stuff up in their terraced house in east Hackney, before bottling it up and sending it out on a pizza delivery moped....still, I'm sure it will do the trick!! Back at home now and having had a couple of hours of rest, I'm actually feeling ok.

Regarding a previous comment about how this will effect my golf swing. Well, when I last met the consultant it turned into half medical review, half golf lesson. He's convinced I can still play, but the consultant at Hammersmith is not so sure. So, we spent a good 10 minutes discussing the technicalities of the golf swing and doing air shots in the consulting room.......however, still no decisions made. Maybe I should get in touch with my insurance company to make sure I'm covered for golf tuition!!

Spot the difference



Mum knows best!

First round

Just back home from the first round of chemo, with my rucksack full of various performance enhancing drugs. Thanks once again for the many texts I received. All went well and I'm currently feeling fine, after having both the Velcade (chemo) and the Zometa (bone strenghtening). Is it a good omen when you meet the hospital chaplain in the lifts on the way up to the ward, and he gives you a cheeky grin??

Anyway, so far so good and I've even been given an A&E Fast Track card. It sounds a bit like Chessington World of Adventures, where you pay a bit extra (or in this case get a disease) and you get to go to the front of the queue. Next session planned for Thursday so lets see how things go over the next couple of days.

Note to self, must shave lower arm as the most painful part of the day was having my hairs ripped off with the plaster......what a wuss!!

Here we go

Here we go....off to Kingston Hospital for the first round. K.O. 10:00am.

I've reached the starting line...

Congratulations Mr Hoban, you've reached the starting line. All kicks off tomorrow with my first cycle of chemotherapy. I actually haven't been overly concerned today as I've been really trying to stay focused in the now and not think too much about tomorrow. Sometimes it seems easy, sometimes much harder, but I'll keep practicing because I know this approach will keep me less anxious, more positive and more in control over what's ahead.

I know during my last post I spoke about being in stage IIIA, but to balance that, it's important to note that my vital stats are currently looking healthy. The full skeletal survey and PET scans revealed no additional tumours or other sites of active desease (external to my bone marrow). My liver and kidney function are normal, calcium levels normal and my heart 'unremarkable' (the story of my life!)......don't know what all the fuss is about really.

A massive thank you to you all for your cards, e-mails, texts and thoughtful words offering support and encouragement, it's made a massive difference to my outlook and approach to all of this. Without you folk, this would be a lot tougher and I'll take all that positive energy with me tomorrow.

So, tomorrow it is, the start of the medical part of my fight back. Not sure how I'll react, but that's for tomorrow. Might even be good news if it knocks me out for 24 hours, saves watching England being slaughtered by the French in the Euro's......now that's postive thinking for you!!

Difficult morning

Difficult morning today. Had to copy the doctors letters for the health services department at work. Decided to read the detail in one of the latest letters regarding my diagnosis.....yep I know, why hadn't I done that already? Being scared and putting myself into unnecessary worry overdrive is the only answer I've got. Anyway, the words 'consistent with multiple myeloma stage IIIA' hit me hard. I've been thinking up until today that my symptoms are consistent with stage I. I apologies if that sounds really naive, but I genuinely thought that was the case. Reading details on the internet can be a real disaster area (the 'myeloma equals death' site was a real boost to my confidence, and one I shall cherish during my low moments), so I tend not to.

Thankfully, my lovely wife and her best Swedish mate got to work on some more trusted sites, and quickly got back to me with some facts and reassurance. I won't go into details here, but I luv um both for setting me back on the right course this morning. So, the moral of that story......well, I can't think of one....but at least I've got more than 8 hours to live, which is a bonus!!

As another close friend has said,' don't focus on the prognosis, it is ultimately the mind that heals the body'. This is hopefully another lesson learnt through experience......I no doubt have a lot of lessons to learn during this journey. A fight is there to be won so role on Monday and the start of my chemotherapy.

Oh yes, a number of people have asked about difficulty in posting comments (see, I knew it wasn't just the fact that I've got no mates). Only thing you need to do is go into the Google homepage, select 'Sign In', which allows you to 'Sign Up'. Use your own e-mail address, put in a password and this will allow you to create an account and post a comment. If this doesn't work, text me or perhaps I'll set up a Facebook page...

Have a good weekend!

Dentist

Final prep for next week...a visit to the dentist just to add to the excitement. Needed to confirm the teeth were in good working order prior to my first bone strengthening injection on Monday.

Woke up this morning feeling low....a little of the 'why me' syndrome creeping back in. Things have changed quite significantly for the better in my mindset over the last week or so, following my visit to Hammersmith Hospital (when life expectancy was put on a plate for me), but I recognise that I'm still going to have my ups and downs for some time to come. Maybe it was mixed with some post Jubilee blues.....

Comment of the day from a colleague at work. 'So, being on 'cycles' of treatment is going to make you a bit like a woman...we'll only be able to talk to you on the Wednesday and Thursday of the third week'. Publisher Lena has ok'ed that comment, so any complaints, deal with her......or call Google....

Jubilee weekend

Good Jubilee weekend, out for a barbee on Saturday night with good friends up the road. Great food, few cheeky beverages, but most importantly, managed to beat their 14 year old son at table football. See, I've still got it......that ugly competitve streak that you should maturely put to one side when you're playing sport with children. Does table football actually count as a sport?

Anyway, street party yesterday and we got lucky with the weather. Thanks to the organisers for a great afternoon of good laughs, food and drink, really enjoyed by fam Hoban. For those late night revellers, don't feel guilty about keeping me awake until one in the morning with the music, I'll have plenty of time to catch up on sleep in the coming months... 

On a more serious note, I had a good chat today with a good friend of mine who's in the medical profession. She'd spoken to a colleague of hers who's a myeloma expert. Reassurring to know that the doctor overseeing my treatment is well respected in the 'myeloma' world. We spoke a little more about one of the potential side effects of the 'Velcade', the chemotherapy drug I'll be taking, called peripheral neuropathy. It's felt as a numbness, tingling or burning sensation of the skin, or pain in your hands or feet. Hopefully one I'll avoid, as it could result in a change to the treatment, but will need to remain very aware of it.

Hope you all had a great Jubilee weekend and enjoyed the British summer at its finest..

Gift from mum

Subtle hint on what one of the side effects of the chemo is likely to be. Bless her!!

So, what brings me here?

Well, you know what they say, ‘Life is what hits you when you’re busy making other plans’. There I was wondering whether an honest builder still existed in the UK when, wham!!....’your MRI scan (for what I thought was a ligament problem) has revealed a lump on your sternum, and need you to come in for further tests’.


That was on 2^nd May 2012. One CT scan, PET scan, skeletal x-ray, multiple blood tests, and two biopsies later (of which the bone marrow biopsy comes highly recommended), I was diagnosed with Multiple Myeloma on 26^th May 2012. The words ‘Plasmacytoma’ and ‘Myeloma’ have become familiar to me over the last few weeks. If you’d have asked me what they were in April, I wouldn’t have known. For me, the process of building up knowledge on this diagnosis has been a gradual and scary journey, but with my wife acting as a filter, that knowledge is starting to build. I have started to take on board some of the hard facts about this disease and its treatment. I knew they would be difficult to take, but I’m getting there.  

My treatment starts on Monday 11^th June, with the first cycle of induction treatment, a form of chemotherapy. Each ‘cycle’ consists of two injections of the drug ‘Velcade’ week 1 and week 2, with week 3 off. The current plan is to have 6 – 8 cycles of induction treatment at Kingston Hospital, with the aim of reducing the concentration of myeloma cells in my bone marrow. This will be followed by the next phase of treatment, high dose therapy and a stem cell transplant at Hammersmith Imperial Hospital. As I understand more about this treatment, I’ll let you know.

So, what brings me here? Well, I hope this blog will form an honest record of my journey through this treatment, and the inevitable highs and lows that it will bring…. that and the fact that I haven’t got enough inclusive minutes on my phone package to call everyone. I’m in a good place at the moment due to the total love and support that has already been shown by both family and friends. I’m realistic. It’s going to be a tough, tough journey over the next year, but I’ll get there with you all by my side……..now I’m starting to cry, so I’m off to ‘get a grip’. Speak soon.