Me and my pneumothorax

So, a little more detail on the trials and tribulations of a bloke with a dodgy ticker…..oh yes, and myeloma thrown in for good measure!! As I briefly mentioned yesterday, things have been progressing smoothly since the operation. I ended being kept in hospital for an extra couple of days as unfortunately my surgeon punctured a small hole in my lung during the procedure, which resulted in a pneumothorax. This is where air that leaks from the lung gets trapped between the lung and the chest wall, causing a collapse of the lung. In my case it was relatively minor and actually resolved itself by spending the following week focussing on deep breathing to expand the lungs. Fortunately, no need to put in a drain, which is good news….didn't really fancy that! In my surgeons defence, apparently the procedure was more tricky than usual, as my veins have narrowed considerably due to the chemotherapy I've received and my lungs are quite large, as I'm damn good looking. Not his words…... exactly…..but it sounds plausible!!

After seeing my consultant last Friday for the all clear regarding my pneumothorax, I'm now focused on stretching my chest muscles around the wound and mobilising my shoulder. After initially being a tad paranoid that I'd end up ripping out the ‘jump leads’ attached to my heart, I'm getting more confident to use my left arm normally. As usual, I want things to progress quickly, but as my good lady reminds me, it's only been a week and a half since the operation. Most importantly, having been shaved in various areas prior to the operation (some of which I don't fully understand, but I'm not going to be the one to ask), my hair is starting to re- establish and my mangy stray dog look is rapidly disappearing!!

So, what else is there to tell. Well, I'm planning on getting back behind the wheel this weekend. My consultant has confirmed that as far as he's concerned I'm fit to drive. I've also informed the DVLA and my insurance company, so I'm good to go!! As far as golf is concerned, it's off limits for another four weeks.

These pacemakers are amazing little devices. The one I've had installed is an MRI safe, dual chamber pacemaker, with electrodes placed on my right atrium and right ventricle. It passively monitors the heart and only kicks in when it senses that my heart has missed a beat. When it does trigger, it paces my heart at the same rate it was beating prior to failure, and then switches off when my heart resumes normal operation. Battery life’s a bit more than your average smart phone and should last 8-10 years. Guess where it's made, yep, Sweden. Is there anything they don't do….Spotify, Skype, Bluetooth, Minecraft….taxes!!

That's enough of the technical stuff. As I said at the beginning, physically I'm healing well. I've also now come to terms with having a pacemaker fitted. I wasn't in such a good place when I had the operation, it all felt very sudden and didn't give me any time to get my head around things. I know it had to be done quickly, but I didn't feel I had much control over what was happening. Similar to my myeloma experience, as I return to normality, things become a lot easier and eventually it all becomes part of the routine. My heart condition is now sorted…..so that's one less thing for me to worry about!! Back up to Kingston hospital this afternoon for my monthly Zometa (bone strengthening infusion). Back to life, back to reality!!

 

And the heart keeps ticking!!

A week on from the operation and all is going well, both physically and mentally. More details to follow, but for now I feel more positive and confident that I'm well and truly on that road to recovery. Even went out for a bike ride around Richmond Park this morning, and the heart kept ticking......I think!!

Life is what hits you... part II

 

You could say quite a lot has been going on over the past few months. You could say life is what hits you when you’re busy making plans. I started to put together this post after my last routine consultation back in March, but have never quite got around to publishing. I thought what I might do then is provide chronology of what’s been going on, beginning February half term.

Feb 18th
We decided to take a short family break in Rome over the half term week. Lena and I had been 14 years ago and loved it, so we wanted to show Marcus some of the famous landmarks…educate the lad as it were. I suppose it's a sign of the times. Our apartment was close to Castel Sant’Angelo, and as we drove past it in the taxi, Marcus’ first comment was ‘cool, that’s the castle in Assassins Creed’. That became a bit of a theme throughout our subsequent sightseeing excursions. We all really enjoyed the break, the weather was kind, 18C and clear skies, and Marcus was genuinely interested in a number of the landmarks, as he'd been studying the renaissance at school, and this clearly brought some realism and experience to all the theory. Highlights of the trip; seeing Perry from Diversity in T5 on the way out, walking round the Colosseum, Roman Forum and Pantheon and Marcus getting a selfie with Pope Francis. Ok, I guess that's a slight distortion of the truth, a selfie with a picture of the Pope on the large screen at St Peter’s Square, Vatican during his weekly audience! Low point of the trip; not only seeing Arsenal loose to Bayern Munich in the Champions League in a Irish bar, but at the same time being accused of being a ‘cold individual’ by a drunk American girl because I refused to talk to her….because I was trying to watch Arsenal being taken apart!! Where's the justice in that!!

Marcus Maximus - Gladiator

 

March 26th
I had my regular consultation with my haematologist this morning. My paraprotein level remains stable at nine, which is the most important indicator. My HB remains low, but in general I've been feeling ok in myself, just a noticeable level of tiredness and fatigue on occasions. Neutrophils within the normal range at 2.5, platelets 166.

I mentioned that I'd been having a few spells of dizziness, nothing too alarming, quite random and something I felt I'd had been around for a fair number of years. The spells only last for a split second, but I felt they’d become more frequent and had a concern that my treatment might be linked to this change in some way. My consultant arranged for me to see a neurologist for a brain scan and further diagnostic tests.

April 1st
We'd booked a couple of rounds of golf at Celtic Manor for my parents Christmas present. I've said that I want to experience playing a few more famous golf courses, so Lena and I joined them for the trip. Hotel room was great, with our balconies overlooking the golf course. Golf was a mixture, but overall great fun and an experience to play the 2010 Ryder Cup course.

I have also taken the decision to drop back to part time working for six months. As I mentioned previously, I have been feeling a little jaded at times, and suddenly, by returning to work full time I had the feeling that most of my energy was being spent at work, and life was starting to ‘pass me by’ again. I felt that moving to four days a week would hand me some time to think, but more importantly, free up weekends so I could enjoy more family recreational time rather than trying to catch up on all the other stuff I either didn't have the time or energy to complete during the week. I say that, I've also just rejoined Hampton Court GC, so in reality, less time with the family, more time on the golf course!!.... To be fair though, it's also great to be able to spend a few hours outdoors playing with Marcus, who's also rejoined.

April 11th
My birthday and the holidays just keep on coming. This time five days skiing in Trysil, Norway, with my brother and family. Being April and being fooled by the temperatures in the UK at the time, I was thinking, spring skiing, beers out on the sun terrace, skiing in my string vest and shorts…ok, forget the last one. It was just as well I chose to take my summer canvas shoes, as they came in very handy when we  arrived in the middle of a blizzard. Must say, they didn't perform that well when I was trying to dig our way into the chalet. Still, at least I’d been slightly sensible and taken Marcus’ winter gear, so he at least was prepared for the conditions….and what fantastic skiing conditions it turned out to be. Plenty of good snow and not too warm. Marcus’ skiing came on really well, and under the expert guidance of myself and brother (well, my brother really, he's the qualified ski instructor), we had him carving some parallel turns by the end of the week. Much love to my brother and family for a memorable week!

 

Just a little bit of snow.....

 

This is where my summer shoes came in handy!

 

 

 

April 24th
So, back to these dizzy spells. Following my initial consultation with the neurologist, I had an MRI brain scan, EEG, an Audio Vestibular (AV) assessment and 24 hr ECG. The AV assessment was an interesting one. The instructions said to avoid alcohol the night before the test and I can now fully understand why. One of the tests was a Bithermal Caloric test. It's been around for a while and involves irrigation of warm and cool water (+/- 7C from body temp) into each ear for 30 secs. This temp change causes fluid movement inside your inner ear canal (your balance mechanism), which in turn can lead some people to experience the same ‘my whole world is spinning and I feel sick’ feeling they would an hour after downing 15 pints of Stella. I unfortunately was one of those people, so not something I intend to try again in my lifetime. Anyway, the long and short of it was, MRI scan was fine, no signs of any potential tumour, the EEG showed no signs of epilepsy, and the AV assessment showed only a minor insignificant imbalance between my left and right side. Unfortunately the ECG wasn't so positive.

May 22nd
After a further 48hr ECG confirmed the previous results, the consultants words ‘Patrick, you have a life threatening condition, we need to fit a pacemaker immediately’ were not really what I wanted to hear. Even though I was aware from the previous ECG that this might well be the case, it didn't really register. So, to be told my condition was life threatening came as a real shock. The 48 hr ECG confirmed I had heart block, a condition whereby the heart misses beats due to an ‘electrical’ failure. Effectively my heart was stopping for just over two seconds at least once an hour, and actually missing four beats (about 4.5 seconds) on a number of occasions. I guess the consultant was worried that, at anytime, the heart could decide not to start again. The funny thing was, having kept a log during my ECG, none of my infrequent dizzy spells seemed to line up with my episodes of heart block. Anyway, the operation to fit the pacemaker was scheduled for the following day.

May 23rd
Good to know I've got the love and support of my family today..….just been sent a link to the Olly Murs song ‘My Heart Skips a Beat’!!

Anyway, here I am, cannula at the ready, disposable pants on (there's a first time for everything), lying in yet another hospital bed waiting for my pacemaker to be fitted. I'm still in shock, this has all been so fast. The month of May has not been kind to me over the last years, my sister-in-law’s funeral in 2011, diagnosed with myeloma in 2012, back in hospital with shingles in 2013, and now, 2014 diagnosed with heart block! We're not yet sure whether it's as a result of my myeloma, the high dose chemotherapy I've received, or that I've just been very unlucky for a second time. The fact that my myeloma was diagnosed early and this heart condition has been discovered before anything serious happened is, in a weird kind of way, good news! Trouble is,  I just don't see it that way right now. I'm pissed off. Why has it always got to be me? I've had my fair share of shit over the last few years….it's someone else's turn!! I spent most of yesterday on an emotional roller coaster. Yes, great that it's been discovered, but you know what, it's just not bloody fair!! I'm told, once the pacemaker’s fitted, everything will be fine. Well, you know what, it won't, I've got myeloma to deal with as well. Things will never be right and this is just a bloody distraction. I'm scared and pretty fed up with things at the moment. It's taken me back to when I was first diagnosed with myeloma. Too many unknowns, too many tears. I know given time I'll come to terms with this…..but right now I'm just thinking, what the hell am I doing in this hospital bed….again. This isn't the way it's meant to be.

In the words of John Legend (All of Me)….’I’m so dizzy,  don't know what hit me, but I'll be alright. My head’s underwater but I'm breathing fine…..’

Happy Birthday Stem Cells

That was then...
 (£10 prize if you can spot the stem cells)



and this is now...

Funny, that first picture made me cry tonight. Don't know why.....reality check, memories, thankful for being where I am now....who knows.

Champagne and tears.......a winning combination!!

Looking back

I’m back at Hammersmith tomorrow for my one year post transplant check-up. Yep, one year….almost! Lena and I have spent a fair bit of time over the last few weeks looking back at where we were this time last year, reminiscing about the great unknowns that stood before us at that time.

At the beginning of December 2012 I spent my first few days in one of the isolation rooms up at Hammersmith, bringing home to me just how vulnerable I was going to be during my transplant. I had my Hickman line inserted and started the whole process of mobilising my stem cells ready for collection. Then it was the 10 days of self-administered growth hormones, injecting myself for the first time. Never been one to watch the needle go in, so that came with its own set of challenges.

Tomorrow marks precisely one year since my stem cell collection. As I said at the time, that turned out to be a massive tick in the box, making all the associated bone pain well worthwhile. Since that day, my cells have been cryogenically frozen in liquid nitrogen, warmed up in a nice bath and then fed back into the poor sod that gave them away in the first place. Most importantly, as of 31^st January 2013, they started growing healthy bone marrow and producing new blood cells.

How life moves on. From a difficult beginning I’m now back at work pretty much full time and cycling around Richmond Park in the evenings….I say cycling, Marcus does that, I just huff and puff, whinging about my lack of breath and general fitness! As a family we’ve done more things in the second part of this year, rather than saying we should. It all culminated a few weeks ago in a dining experience up at Heston Blumenthal’s ‘Dinner’ restaurant at the Mandarin Oriental Hotel in London. Admittedly, a delayed Christmas present from last year, but what an experience it proved to be. Fortunately, one of our good friends happened to know the GM up there very well, and was willing to put in a good word for the Hoban’s. I’m sure it would have been a fantastic evening anyway, but Paul went out of his way to make the occasion truly unforgettable. We even got to sample Heston’s liquid nitrogen ice cream trolley….no stem cells this time, just natural yogurt, cream, eggs, gloves, goggles and …errr…liquid nitrogen!!

 

 

From a health perspective, everything is stable, which is what we like. I had my last set of blood results a couple of weeks ago and my paraprotein level remained at 9. I’m still having my monthly Zometa infusion, and I’ll continue with that until at least the middle of next year. Next paraprotein level check is due mid-January, when I’m expecting my consultant to give me the good news that a one year post transplant bone marrow biopsy is needed…..something to look forward to early in the New Year.

As for Christmas, well, this year is going to be a more social affair, now I’m allowed to mix with the great unwashed…well…family. Last year was great with just the three of us, actually quite relaxing…the calm before the storm. This year it’s going to be fantastic to spend Christmas with all the family, but with a two year old nephew and four year old niece on the scene, I’m expecting a storm…..at approx. 5am Christmas morning. Joy!!

 

 

 

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!!

Sunscreen

Well, after nearly two months as the proud owner of a third nipple, it was finally removed yesterday. If the truth be known, the Spider Sisters never did get back to me reference my offer to join them, so things weren't looking particularly good for a new career on the stage anyway!!

It turned out to be another positive NHS experience,  in all its administrative glory. Arrived at Hammersmith for the minor operation at 07:30 (the procedure was planned for 08:00), the cuff (aka third nipple) was eventually taken out at 16:30. Eight hours of waiting around in a hospital full of sick people when you've got a weakened immune sysytem....just what the doctor ordered!!

Anyway, it's out now, so I'm really just waiting for the bone marrow biopsy, which will probably take place at the end of next week or beginning of the following. This aligns with 'day 100', which is typically when my paraprotein level will be at its lowest post transplant, so should give a true picture of how successful the transplant has been. The results generally take around a week, so I should know the score around the beginning of May, at which point my consultants will be making a decision on future treatment.

As an aside, I've made an interesting discovery over the past weeks. Having been invited around to some good friends a few weekends ago (my first 'post transplant' social), we decided to have a drink out on their terrace,  taking in the first evening sun of the year. I hadn't put any sunscreen on, but after half an hour, decided to slap a bit on knowing my post chemo skin would be very sensitive. The following morning my face was completely red, itchy and puffed up around my eyes. I assumed I'd got burnt during my brief exposure to the 'fierce' early April sun the previous night. However, last weekend I went to watch Marcus play football, and seeing as it was partly sunny out, put on some factor 50 and wore a hat to further protect my face. I was only outside for a little while but sure enough the following morning my face was a mess....yep....even more than usual!! Anyway, to cut a long story short, after several 'experiments' it appears my skin is far more sensitive to sunscreen than it is to the sun! Could make life interesting later in the year, though hopefully by then I'll have hardened up a bit.

Other than that, my blood results remain fairly stable, I'm getting stronger and fitter as the weeks pass and my hair continues to grow....though apparently not at the rate required to avoid the 'wig cap' that Len and Marcus kindly purchased for my 46th birthday last week. How thoughtful!!

 

Moisturising

Well, it's been just over two weeks since my last update.....doesn't time fly when you're having fun!! I was up at Hammersmith last Tuesday for blood tests and a review with my consultant. Bloods are heading in the right direction and in some cases, though still low, are within the 'normal' range:

WBC 5.9 (normal range 4.2 to 11.2)
RBC 3.4 (4.2 to 5.3)
Neutrophils 3 (2 to 7.1)
Platelets 206 (130 to 370)
Hb 11.7 (13 to 16.8)

In fact my consultant is no longer 'concerned' about my blood counts and is now focusing on my paraprotein level. As I've previously said, the real success of the transplant won't be known until I get the results of my next bone marrow biopsy, three months post transplant....so around mid April. That's getting closer and my mind is definitely starting to shift its focus from 'post transplant recovery mode' to 'how successful has this transplant really been mode'...and unfortunately this does at times bring negative thoughts to the surface. I do try and keep positive, but inevitably the shield does slip sometimes.

So, what else is new? Well, still on the medicals, I've started my new course of antibiotics. No allergic reaction, which is good news as I'll be on these for the rest of my life. They're supposed to slow down the spread of any infection, should I get one, as apparently the spleen is damaged during the transplant, and part of the spleens normal function is to help fight infection. The itchy skin continues and boy am I getting fed up with having to moisturise my entire body twice a day. According to my consultant, this is likely to continue for a while as the high dose chemotherapy attacked the skin as well as my bone marrow.

On the plus side, my hair has started to grow back over the past few weeks, though it's weird seeing dark Professor Robert Winston like eyebrows sprouting, since I'm used to being blond. Unfortunately the new body hair hasn't aided the moisturising process either!!

My taste has pretty much returned to normal now (I can finally savour a beer) and despite the fact I'm still not allowed takeaways, I've put on more weight....not back to my full fighting weight, but getting there. My energy levels and overall fitness are also improving as my red blood cell count picks up. All good stuff, but the consultant has advised me to steer clear of pubs, restaurants, public transport.... in fact anywhere where I'd mix with lots of people, until at least three months post transplant.

Marcus and I have also been busying ourselves building a radio controlled off road car over the past few weeks. We took it out for its maiden voyage yesterday down at the park... great fun...pretty damn quick as its got a fairly powerful fuel engine.

Anyway, I'll leave it at that for now. As you've probably noticed, I've started to reduce the number of blogs I write. Whilst things are stable I'll probably only update it every few weeks, but I promise, should anything interesting happen, like I get pregnant, my third nipple gets removed or get some significant news on my progress, I'll keep you all updated!

Another week

Another week slips by and though my skin remains sensitive and itchy, things have really improved over the past few days. The itching is more of an occasional annoyance now, like having flees, rather than torture! My face has fully returned to its former glory and I'm sleeping at night, be it still with the aid of sleeping tablets.

My blood results on Wednesday were pretty much unchanged from the previous weeks, but in myself I'm feeling much stronger. I've even been out on my bike in Richmond park, which considering where I was just a few weeks ago, feels like a huge step forward. I've also now moved to fortnightly reviews with my consultant, so I'm not due back at Hammersmith until 12th March.

So, everything is still moving in the right direction. I even had my first foreign bodies (visitors) in the house this weekend...my parents popped in together with my brother, who came over from Sweden for a flying visit....great to see them all....no adverse health reactions so far!!

An itchy few weeks....

Apologies for the lack of an update recently, but to be honest it's been the last thing on my mind for the last 12 days. In fact the past few weeks have been one painful, itchy, sleepless blur. A couple of weeks agoe put on a specific antibiotic to try and get rid of the abscess under my arm. Unfortunately I had an allergic reaction to this antibiotic, resulting in a rash which quickly covered my face and neck. It felt like severe sunburn and looked as though I'd spent way too much time under a high intensity sunbed. After a few days my face then started to swell up and my eyes closed as a result....a very handsome young man indeed!! In addition to the face I also started to get small blisters on my upper torso....not so painful, but extremely itchy. All this meant no sleep, which of course just added to the frustration. The swelling continued to get worse last weekend, so I was advised to go to A&E. Three hours later we returned home with more anti histamine tablets, but nothing else. A&E didn't want to prescribe any steriod based creams due to the effect it could have on my immune system, so all the time my breathing was unaffected, I'd basically just have to man up and grin and bear it....just what I wanted to hear!! Relief finally arrived last Wednesday when my consultant did prescribe some steriod based creams for both body and face. Having used them for the last two days, my face has calmed significantly, however my body (which they think is folliculitis) remains quite spotty and still very itchy. I've also been prescribed sleeping tablets, so I've finally been able to get some shut eye. After a nightmarish two weeks, I'm finally starting to feel normal again.

I've also been back to Hammersmith twice since my last update for more immunoglobulin (antibodies) and my pentamidine nebulizer (for pneumonia). Most importantly for now, my blood counts are improving, so for the medics and vampires amongst you, here are the readings:

14th Feb; WBC 4.6, neutrophils 2.0, Hb 9.8, platelets 176
20th Feb; WBC 6.1, neutrophils 2.2, Hb 11.4, platelets 232

As I think I've previously mentioned, the improving blood counts are great news, it indicates that my stem cells are growing well. What it doesn't show however is the impact the transplant has had on my cancer. I'll only know this in two months time, when I have a bone marrow biopsy.

Fortunately my platelet count of 176 on 14th Feb meant that I could have my Hickman line removed. I would describe it as a painless, but fairly brutal process. My image of a doctor putting two feet on the side of the bed and tugging with all his might was actually not far from the truth. There was none of this 'we'll give a gentle pull and if the line doesn't come loose we'll need to cut the cuff out first'. The cuff by the way is a kevlar disc just under the skin onto which your skin grows to hold the line in place. This 'baby' was coming out whatever....even if it meant half my internal organs coming out with it. Two hard tugs later and the line was out....unfortunately minus the cuff. This decided to stay inside my body, which now makes me the proud owner of a third nipple!!! Though this does potentially open up a whole new career, to be honest I'm not a great fan of having bits just left in my body, so my consultant has promised to cut it out once my skin condition is under control.

So, all in all, the past two weeks have not been the most pleasant experience...very tiring and very frustrating to say the least. Still, I have come out of it all with a third nipple, and there's not too many people in the world that can say that!!!

Hickman line

Well, much as I thought, the last few days have been a series of ups and downs. Some days I feel that my energy is gradually returning and I can exercise or go for a short walk, the next I need to sleep most of the time. The abscess under my arm is improving with the antibiotics and my mouth ulcers have gone, so all is heading in the right direction. My appetite is even starting to return, though I think in the end my hatred of hospital food was more a mental block (having been encouraged to eat it immediately after the chemo, even when I was feeling very nauseous).

I had my first follow up visit to Hammersmith on Wednesday and for the medics amongst you, my blood counts were; WBC 2.2, Neutrophils 1.2, Hb 9.5, Platelets 46. My white blood cell and neutrophil counts have dropped since leaving hospital, but again that was fully expected as the growth hormones I was taking were a stimulant and raise these counts to artificial levels, which aren't sustainable in the short term. The expectation is that all my blood counts will improve from now on....next follow up visit is this Thursday,  so all will be revealed then.

They also decided to leave my Hickman line in for another week, as my platelet (blood clotting cells) count was too low. Annoying, but I guess they didn't want to have to make that embarrassing phone call; "well Mrs Hoban, the good news is your husband was in remission from his cancer.....the bad news, he bled to death when we removed his Hickman line". Anyway, my hope is that my platelet count will be high enough this Thursday for them to remove the line.....it's been a great friend for over two months, but I'm getting a little bored with it now.

So, things are moving forward gradually, but patience will be the name of the game over the next few months!!

Settling in

Day two of being home and I'm starting to settle back into family life. The final leg of my journey back to recovery has began and even over the last few days it's become much more real just how long this recuperation period will take. Yesterday I was probably working off adrenalin....today the reality check. I went for a 20 minute walk outside to get some 'fresh' air, as I did yesterday, but felt absolutely drained when I returned home. I've been for a lie down for a couple of hours, but even now feel very lethargic and tired. It's funny how the isolation room almost disguises just what a lack of energy you actually have. I did do some exercise whilst in the room, but you invariably spend most of your time sitting or laying in bed. At home I'm up and about, only really pottering (like the old man I am), but even that wears you out quite quickly. Even the background sickly feeling has returned, so I'm back on the anti nausea tablets to ensure it's kept under control. It's all going to take time, l knew that...three to six months is typical, to get back to somewhere near my pre-transplant condition levels. Saying that, I've got 86 episodes of The Sopranos to get through....that should take me into April!!

Anyway, being back home is just wonderful...not only familiar surroundings, but also the fact that the medical part of the transplant is over, and at least up until now, has been a real success. I'm back at Hammersmith tomorrow for blood tests and to see my consultant.  We're not really going to know just how successful my treatment has been until my next bone marrow biopsy,  which is likely to be in three months time. Until that time the hope is that my blood counts continue to rise and that I don't pick up any infections or viruses. I'm also having the Hickman line out tomorrow.  I'm a little apprehensive just to experience what was meant by "we just give it a little tug and hopefully it will come free". I'm hoping the pictures I have in my mind of me bracing myself and the doctor giving a mighty heave with both feet against the side of the bed do not become a reality. I'm sure it's going to be slightly more clinical than that.

So, I'm back home and settling in....and I have my lovely family back for support.

Home sweet home.....

We have lift off

The FANTASTIC news we've been waiting for, my stem cells have successfully engraft, and my neutrophil count is up to 0.5. It's very likely the count will continue to rise, and I'll soon be out of isolation....yippppie!! How great does that feel...Len and I both had tears in our eyes!!

.........and just when I thought I'd seen it all, along comes synthetic saliva...in an aerosol can. I've still got a dry mouth due to the chemo, and this has been offered to me as the solution to all my woes. You spray it directly into your mouth. It is literally like having someone spit on your tongue!! I've got natural flavour (whatever that means), but it does apparently come in 'bronchitis' and 'pneumonia' flavours for a special treat!!

You know what, who cares, MY STEM CELLS HAVE ENGRAFT!!!!!!!