Summer Time and the Living is Easy...

Well, I've finally decided that it's time for another exciting instalment of 'The Life and Times of Patrick J Hoban'. It's been over two months since my last post and a fair bit's been going on over the summer......we've even had a new roof put on the house....how wild is that!!

I'll start off with the most important stuff, and that's the health update. It's been good news from a physical perspective, with my last two blood tests showing my paraprotein levels stable at 10, give or take. All my other blood counts are now back to pre-shingles levels, with my neutrophils level a respectable 2.4, WBC 4.4 and HB 135. All a bit low for normal folk, but considered good value for us myeloma addicts!!

I continue to work part time, with Wednesdays off to break up the week. From a physical perspective I'm coping well, but still remain wary of what happened at the end of May. As I probably said at the time, things felt perfectly fine one minute and the next I'm back in isolation for a week hooked up to an IV drip. I need that little surprise again like a hole in the head!!

From a psychological/emotional perspective I have to be honest and say that things have taken a bit of a dive over the past few months. I've taken a hit confidence wise, which feels more acute in the work environment. I seem to have this unhealthy habit of comparing my performance now with how I felt prior to having seven months off for my transplant. The funny thing is, there's absolutely no pressure or expectation being set by the company, and I appreciate that so much. This feeling is all self inflicted, but saying that, it's a feeling that's there. I need to accept and understand that I've been through a significant change in my life and it's going to take time for things to settle down and for my confidence to re-establish. I mustn't just push what I've been through to the back of my mind and hope to carry on regardless. Annoyingly I can't even blame this on someone else's DNA.....I had my own cells put back in.....damn!!

In addition to the fall in confidence, my ability to focus has also been blurred by the myriad of thoughts running through my head. These have centred around ensuring my diagnosis and treatment have a positive impact on my outlook and the way I live my life. I suppose it's that classic reassessment of my values. I think I'm just frightened of returning to my pre-diagnosis 'normal' lifestyle. Amazing really. I've been craving a return to normality since my treatment began, but now I just don't want my life, and especially my family life, to gradually drift back to where it was a year last April. That's not to say that things back then were particularly bad, it's just that since then my perspective on life has changed. I don't want to be in a position of relapsing at some point in the future, then looking back and thinking, I'm the same person doing the same things I did before my diagnosis. I'm not talking about wholesale changes, perhaps just little tweaks in my life. It's difficult to explain really. This diagnosis has forced my hand into understanding what's truly important in life....faith, feelings, family, friends, wellbeing and San Miguel!! Other things perhaps just aren't as important any longer.

One thing is for sure. I need to give myself the time to re-adjust, and not be too impatient or hard on myself. I am only eight months out of a stem cell transplant, a fact that seems all too easy for me to forget.

Anyway, moving on to holidays, this summer has been somewhat more fruitful than last. Two family holidays including a trip to France and Sweden, finished off with a boys golfing weekend in Turkey. Oh, and Marcus even managed to squeeze in a weeks motorsport and adventure holiday with a mate of his. All great trips....we even had pretty much continuous sun and warm temperatures in Sweden, a minor miracle in itself.... This time around we rented our own cottage on the coast, just south of Gothenburg. Staying with family is great, but it was relaxing for the three of us to have our own space and be able to invite our respect in laws over to 'our place'. Rather than dribble on, I've included a few pictures of the highlights below.

 

 

The little pad in France

 

See, real sun....in Sweden!!

 

There was no room for Marcus on the boat, so we had to drag him behind!

 

Perfect summer photo apart from the weirdo in the foreground!

 



 

Our attempt at a little YMCA on the pontoon!

 



 

Ahhhhh......San Miguel

 

 

 

 

Our room with a view in Turkey

 

 

Anyway, I know I've been a bit slack on keeping you updated with events over the summer, so I'll try and post a blog at least once a month from now on, I bet that makes you happy ;-)

Race for Life

Well, my on going 'allergy' to suncream has really come into it's own over the last week or so. Basting myself with Clover (even though it is lovingly made with buttermilk) just doesn't appeal, so it's long sleeved shirts and a rimmed hat for me for the time being!!

Saying that, things are all good with family Hoban at the moment. Marcus took part in the Race for Life run by his school a couple of weeks ago. He came 4th in the 5k race (out of just over 100 runners) in an amazing time of 18 mins 45 secs, and in doing so raised some funds for a very worthy cause (as well as beating a teacher in the final sprint finish). Hopefully he also drew some attention with his bright orange MyelomaUK t-shirt. I actually found it quite moving when I saw what he'd written on his race bib.

Anyway, as the supportive parent I am, I couldn't hang around to watch Marcus sweat it out on the recreation fields of Teddington school...left that to Len!! I had a boys weekend relaxing on the canals of Warwickshire with my brother and friends planned. We hadn't all met up for a number of years, so it was great to catch up with the guys....all still looking so young...as if they'd just left university....unbelievable!! Well, it was certainly a relaxing weekend, plenty of experienced long boat captains on hand to confidently guide us through the myriad of locks, which seemed to pop up all too frequently. Guess that goes hand in hand with building a canal on a hill....who's bloody stupid idea was that!! I had a fantastic couple of days and even managed to recover from the trauma of having all the locals (including the barmaid) laugh at me for ordering a pint of lager shandy at the first pub we stopped in. My follow up order of half a lager shandy was even less well received....real ale country up in those parts!!

So, what else is new. Well, I'm settling into work more now. It's taken a bit of time to get used to the whole idea, having had seven months off post transplant. My body is starting to adapt and I'm less tired now when I get back from work than I was for the first few weeks. I must say, both British Airways and my work colleagues have been really supportive and patient the whole time. It's made my treatment a lot easier to deal with and enabled me to focus on my health rather than worrying about other issues. For that I am eternally grateful!!

Health wise I'm now back at Kingston hospital for on going blood tests and monitoring. I'm feeling well and certainly starting to sleep better and feel more 'normal' in myself. The skin itchiness has almost gone as well, so life is far more comfortable. With my increasing strength has come an improving social life, and it's been great to get out more and meet up with friends and family. It all helps to bring back some much needed normality to family life.....that's if you can classify our friends and family as normal!! I'm not saying a word.

Took this shot when some deer invaded the green

 whilst I was attempting some much needed chipping practice.

More than makes up for the dodgy golf!!

Back to Work

Time to bring you up to date with 'wotz been happnin' over the past few weeks, since I received my biopsy results.Well, I had my 'final' consultation up at Hammersmith a couple of weeks ago. I say final, but I still ultimately remain under their supervision and will be back up there for my one year post transplant review in January. Until then all ongoing blood tests etc will be done under the care of my haematologist at Kingston hospital.

As for the consultation, we discussed the biopsy and PET scan results and the options available to me moving forward. There were only really two, either to start with a 'maintenance' therapy or to follow a more passive watch and wait policy. Given my current blood results and the fact that I have a good quality of life (even though I haven't won the lottery yet) Len, myself and the consultant all agreed that a more passive stance would better suit my current situation.

Maintenance therapy has its own side effects, which would definitely have a negative impact, whether large or small, on my lifestyle. It would mean taking a low dosage of either Thalidomide or Revlimid, the only two remaining drugs (I've already had a course of Velcade) currently approved in the UK for the treatment of multiple myeloma. Using them as a maintenance drug would potentially mean they could not be used when (yes, when) I relapse....unfortunately your body eventually becomes somewhat immune to the effects of each of these drugs. Another consideration is that there is currently no scientific evidence to confirm whether taking a maintenance drug prelongs remission.

Anyway, decision made, I'm taking the monitor route for the time being. I'll continue to have monthly blood tests for a period of time until I eventually move to needles every three months, a necessity to ensure my blood counts remain stable and most importantly, to keep a close eye on my paraprotein levels, the indicator of how active my disease is.

So, what else is new? Well, yesterday was my first day back at work since the end of November. Weird....like your first day back at school after summer holidays....not that I've done that for a while!! It was strange to meet up with colleagues that I'd only had contact with via Skype for such a long time....even walking into the building felt a tad surreal.  Tiring as well. I was only in for half a day, but still needed to rest in bed for a couple of hours when I got back home.....maybe that's just an age thing!! Anyway, as my consultant has said, I need to take things easy to begin with....he doesn't want to see me back in hospital with shingles again. It's funny, my head is telling me I'm fine, but it's going to take a good year before my body catches up with the idea.

Anyway, just to finish with, I have been thinking a lot recently about the amount of love and positive vibes I've received from all my close friends, relatives and family since my diagnosis this time last year. I'm amazed by the support you've all shown and the patience and understanding my wife and son have given me. Even now as I write this I'm starting to cry and I really can't put into words just how much you've all meant to me and helped me through this difficult time....even though you never clubbed together to buy me that one million pound Koenigsegg...you're forgiven!!

3-4%

I'm going to make it brief. I've just received some fantastic news.....my 100 day post transplant bone marrow biopsy showed only 3-4% plasma cells (malignancy). As a quick reminder, that's down from 25% at diagnosis and 10% pre transplant. Lots of tears (of joy and relief) and you can be assured that Len and I will be cracking open the Champagne tonight!!

Back Home Again

Back at home again, after five days in the big H. The blisters on my back had started to heal, so I was sent packing on Thursday evening. I'm still on high dose anti viral tablets for the next week, by which time hopefully the blisters will have fully scabbed over (hope you're not eating whilst reading this!!). The right side of my torso is still very sensitive and a little painful at times, but there have been no new outbursts of blisters and the doctors have said I was lucky to catch it early and start treatment so soon.

As far as my biopsy results are concerned, still no news from the pathologists lab...will hopefully hear something next week. I'm starting to get impatient,  it's been over three weeks since the biopsy and I usually get the results after a week and a half. Anyway, for the time being I will live off the positive results from my PET scan. It showed no new tumour sites and confirmed the plasmacytoma on my sternum has dramatically reduced...some great news!!

So, getting back to the shingles...as I said previously,  I'll take it as a 'gentle reminder' from my body that I am still only four months out from a stem cell transplant. Out I go to cut the grass then!!

The Return of the Chicken Pox

Well, just when I thought there was nothing of interest to tell you, other than my new crop of 'baby down' soft hair, and me becoming the family lap dog of choice as a result, it all kicks off.

I popped into town with Marcus yesterday morning to buy him a new pair of astro turfs from everyones favourite shop, Sports Direct, and all seemed fine. Got back home and asked Len to look at what I thought might be a scratch or a bit of post teenage acne on my back. She found a clump of blisters, which obviously set alarm bells ringing, so after a chat with the on-call haematologist at Hammersmith, she decided I needed to get to A&E. So, after spending what felt like seven hours (oh, hang on, it was seven hours) at Hammersmith A&E yesterday, I was admitted to hospital with shingles. I'm now back in the same isolation ward where I had my transplant, and on an antiviral IV. They're obviously very keen to get on top of it quickly, as I'm still very much immune deficient only being four months post transplant. I'm in good hands and could be here for a week or so, depending on how well I respond to the drugs. Hopefully we've caught it fairly early, which helps alot with the treatment of shingles. What triggered it.....who knows....just pushing things a little too hard at this stage perhaps. It's frustrating, my head's telling me I'm fine and can return to a normal lifestyle.....maybe this is my body just telling me to calm it a little. As a good mate said, make like the rabbit in the Cadburys caramel advert... just take it easy!

Anyway, just to top off what was a thoroughly shite day, what more could one wish for other than a parking ticket......I am living that dream baby.....well, living the dream minus £50 anyway!!

Last Thursday

Last Thursday....not a day that sneaks its way into my top 10 days of all time. I had my three months post transplant bone marrow biopsy in the afternoon. Obviously, if I could share that experience with you I would.....I'm thoughtful like that!! I've got an appointment with my consultant on Tuesday 14th May, so will get the results and be told whether I require any follow up 'maintenance' treatment at that time.

As I said earlier, not the best of days last Thursday. I received my paraprotein results in the morning from my last set of blood tests taken on 23rd April. The paraprotein is a good indicator of the level of disease, and mine has gone from 13 pre transplant to 9. I was expecting a bigger drop....not based on any facts, just the hope that the paraprotein would have reduced by at least 50%. I was really upset and worked up.....I've gone through all this...for what? I don't know....maybe I'm too positive at times and I just set myself up for a big fall. I don't know.

What proved to be good in the end (just as Len had told me) was the fact that I could talk to my haematologist about the blood results prior to my biopsy. He's a very positive and approachable guy and really helped put my mind at ease. As he said, the key with this disease is stability, not absolute values. Having a stable plateau moving forward is what we need, even if that level is 9. My calcium levels are fine, kidney function good and my sole plasmacytoma (tumour) has significantly reduced....all positive signs that need to be taken into account. So, not the best blood results, but lets wait and see what the bone marrow results are like, and as my consultant says, I just need to get back to living a more normal life. San Miguel and a few rounds of golf it is then!!